An update & some changes

On Thursday night, I was able to get on my Advent Health portal and see some of the lab results requested by the liver dr. . The liver fibrosis came back as being a 3 (out of 4 stages/not really sure what to call it. ).  Then on  Friday, I saw my oncologist again.  Shr had not seen the any of the test results b/c the wasn't the ordering dr, & had not heard from Dr. the liver Dr yet.    She thankfully could go in and download the results from the AdventHealth site & is going to call the liver dr for me to find out what he is thinking/planning in regards to further testing, etc.  The liver fibrosis test appears toindicate that there is some liver disease beyond the cancer in the liver.  We don't know if he'll still want to do a liver biopsy to get more information or not.  On the liver disease, my oncologist  said the liver can regenerate some especially if caused by a drug when you get off the drug though it may take a while..   She said it is hard to know what caused it as I've heavily treated with chemo, it was full of cancer back in 2012, and there has also been radiation on it twice.  All of that decreased the cancer and has given me time so I think the best decisions were made that we could make.  There may be a med that could help slow it, but the only treatment that would stop it completely would be a liver transplant which they would never do on me b/c of the cancer

I am still having major swelling both as edema under the skin & in my abdomen.  When you are carrying 20-30 lbs of extra fluid, it is crazy how much that can make your back, etc. hurt as well.  My oncologist  has upped both of my diuretics.  This new dose does seem to be working better. She  is also putting a standing paracentesis order in  so that I can just call and schedule it when things get really bad.  She did tell me to wait until I’m super uncomfortable b/c it probably is just going to come back until the liver situation gets better. Unfortunately, the paracentesis only gets rid of the fluid in the abdominal cavity but not the fluid under the skin.

 My oncologist thinks the gemzar is what really did this, but since the halaven took counts so low, etc. and b/c of the liver damage, she thinks switching to Abraxane is a better option.  There are apparently different dosing levels for people with liver disease.  I started the Abraxane on Friday  at a low dose, and she said we could always go up if needed. 

Abraxane is in the taxol family (Haleven was as well).  Hair loss is a defiinite on this drug; so, I will be continuing to wear my hats.  This chemo is infused 2 weeks on  then off 1 week.   My oncologist doesn’t expect the counts to go as low on this chemo.  It can cause nausea, stomach stuff, neuropathy & all the typical chemo side effects, but she said typically it is tolerated pretty well.   So far, the only side effects I've had are related to the fluid not the chemo.  

Sorry this was a bit long, but I wanted to ask for specific prayers related to what is going on.   I"m hoping that everyone has a wonderful weekend and a Happy Mother's Day!

An update

Things have been interesting & busy the last 2 weeks or so.   After the paracentesis in mid-April, I was put on 2 types of diuretics to hopefully remove the edema that I was dealing wit in legs, etc. Meanwhile the prednisone that I'd previously been given caused my blood sugar to go crazy high.    So, those were stopped, and thankfully, my blood sugar is just about back to normal. We've had to up the dose of diuretics several times but any changes in the swelling have been very slow going.  

The liver specialist that my oncologist wanted me to see was not seeing any patients until August or September.   Thankfully, my oncologist decided to call herself and work some magic getting me at least a telehealth appointment.   She also had me get several tests to check out possible causes of the ascites/ swelling so that the liver dr would have those by the appointment.  To check out the heart, I had  an  ECG which came back good & actually the same as prior to first chemo back in 2012.  That was a relief since that original chemo can cause damage.   I also had an MRI of the abdomen.  It showed that the lungs were good which is always nice to hear especially with COVID going around.  The MRI showed that there was no additional cancer outside of what we knew about in the liver.  There also weren't any blockages or things of that nature.  That is good as I don't want to have to deal with that or have a surgery, etc. at this time, but it leaves us with more questions than answers.

I had the telehealth appt with the liver dr this past Tuesday. He was incredibly nice and caring, but  so far there is not an "easy" answer for whats going on.  My spleen is slightly enlarged which he says does point to a liver issue. I was also getting very uncomfortable with swelling in the abdomen again.  So, I had another paracentesis this past Friday.  They removed 4300 ml ( or about 9.5 lbs) from my abdomen again with this procedure.  No wonder I was feeling so uncomfortable especially with still having the edema as well.   Some of the lab tests will take about a week to get back.  I'll then do an appt with the liver dr again, and he will decide if he wants to do a biopsy of the non-cancerous parts of the liver.  He seems to be leaning towards some form of liver disease, but will know a bit more after this set of tests.   With all the chemos and radiation I've been on,, he stated that it wouldn't be that unusual  the liver was damaged or lead to liver disease.

Saw my oncologist on Friday before the paracentesis.  I haven't been on chemo in several weeks.  There is a feeling of wanting to get this figured out before having more chemo but also you don't want to wait too long.   Depending on some of these results & what the liver dr is planning, she may have me restart the Halaven on the  lowest dose possible  this coming Friday.  

Not sure how I feel about this.  So, I'd appreciate thoughts and prayers that we do whatever is best for me in relation to all of this, and that things will straighten out with the current issues.    Hope everyone has had a good weekend, and that you are staying safe and well!

A whirlwind couple weeks

The last time I posted, I commented about having to switch to a new chemo due to their being some progression on my scan at the end of March.   Those first couple of days went well on the new chemo, but  I was warned to expect fatigue on day 3.  When that Friday / day 3 hit, I definitely had fatigue, and they had me com in for some fluids as this new chemo can dehydrate you making the fatigue worse.   While getting the fluids, a couple of nurses became concerned that my eyes looked jaundiced and glassier than normal.   Everything was checked out, and they were going to follow it closely on the next Tuesday when I came in for treatment.

Tuesday 4/7-   They get my normal blood draws, and I'm ready for treatment only to be told that my counts were way too low.  My white blood cells and ANC were both at critical lows. They also started thinking I looked flushed and I had begun running a low grade fever.   I was told that they would give me a shot to help boost the counts but then I had 2 options 1- to come in every day that week for another count boosting shot and iv antibiotics or 2 - get put into the hospital.   The come to the cancer center was also only an option if they had the iv antibiotics on site.  Thankfully they did b/c I did not want to have to be checked into the hospital with all the virus craziness.
Wed 4/8 -- I was also having a scratchy or hurting whenever I swallowed anything; so, I got sent to an ENT that afternoon who confirmed that I had pharyngitis and gave me liquid prednisone and amoxicillin to take. (I had memories that liquid amoxicillin wasn't that bad -- my memories were wrong! way too chalky and grow but it did th job.

Thursday 4/9-- During my appt on 3/31 when we found out there were some ascites in my abdomen, I asked some questions b/c I kept feeling like I was swelling.  On Thurs 4/9, it became much more noticeable &  the nurses commented on it.  as well.  We were in a bit of a quandary b/c on the one hand the new chemo was dehydrating me  (my hands feel like crepe paper and keep cracking/ making sores (it seriously reminds me of when I would have to shred cheese on our old metal shredder  - did anyone else have one of those?)  Yet, my insides were continuing to swell more and more with fluid.  Options for how to best hand this were being looked into, and I was communicating with my oncologist over the weekend.  Unfortunately, it became unbearably painful where I could not even put on pants that I had worn a week ago.  I understand many have added the Covid 15, but I wasn't even wanting to eat at all.

Friday 4/10 -- This chemo isn't supposed to cause total hair loss, but to add insult to injury for this weekend, it started coming out on Friday morning.  By Sunday morning it was basically gone and just really wispy strands; so, Dad came over & used the clippers and shaver to get the rest.   I don't know if it was just a perfect storm or what with all my body had been through in that week or so, but I figured if it going to come back, it might as well start from all the same length.   So, caps and things are my friend right now.

During the weekend, the swelling kept getting worse and I had to call the oncologist group.  At this point, it was really impeding my ability to do things.  They gave me the if this starts happening go to the hospital now but otherwise probably better at home, which I agreed with

Monday 4/13 - My doctor got  me on some diuretics to see if that would help before having to take the route of a paracentesis.
Tuesday 4/14 -- Saw my oncologist, and she agreed that it was just continuing to get worse.  She added some prednisone to my meds but also sent in for a stat paracentesis to drain as much from the abdomen as possible.   She has also referred me to a liver specialist to try to determine what the cause is of the flood to begin with.  Fluid taken from the test will also be checked for cancer in the fluid and other types of things.
Wed 4/15 -- Got the call at 9 AM to  make a 11:30 parancentisis .  For this procedure, after finding the best pathways for the fluid by an ultrasound they put a needle of lidocaine in you, insert a catheter or tube of some type and connect the tubing to basically large jugs that were at the foot of the bed; so, I was just looking at all of this fluid coming out of me.  They pulled about 10 pounds of fluid from my abdomen. Apparently, I also have fluid under or between the skin (I don't understand this part really); so, there is still a good amount of swelling and we will have to keep working with the meds to  get rid of that as well, but at least I have some relief.  

I'll talk with my oncologist again on Monday and we will figure out the plan going forward.  For right now, we need to get out of this perfect storm of craziness/side effects and then make decisions  re starting the chemo, etc.

Besides all of this crazy medical stuff, there is also the virus craziness and trying to wrap up the spring semester of classes. Hope you and yours are handling everything as well as possible & staying safe.

Time for a change

The petscan that I had on Friday has shown some progression in the liver and a couple of  lymph nodes. It is a fairly minor progression with none of the 3 areas being over the size of a quarter, but my oncologist has decided that it is time to move on treatment-wise.  She is fairly aggressive with changing quickly to avoid large amounts of growth or things getting out of control.   I am good with this approach, but it is still hard to have a treatment only last for 7-8 months.     The scan also showed some fluid around the liver and around the spleen that she thinks occurred as a side effect of the previous chemo, Gemzar.  Hopefully, changing treatments will help that resolve as well.

I am being switched to a chemo called Halaven.  This chemo is given 2 weeks on / 1 week off with checking labs on the off week.  It can lower counts, but hopefully will not impact them as much as the previous one did.  If they do, it is possible to lower the dose.   While there are a variety of side effects, the biggest one I've been warned about is fatigue.  Stomach issues are possible but not as common as with some others.  Hair may thin, but is unlikely to come out completely.

 The hardest thing right now is just the unknown.  I'd finally gotten to a good place with the previous treatment where I knew how I'd feel when and how to manage all of it.  Now I have to start that process all over again.   Changing chemos in the midst of all this virus craziness adds an extra bit of anxiety since I have no idea what my counts will do, but I"ll just take it a day at a time & makes quarantine myself even more important.  

I'd appreciate prayers that this new treatment will work as well as possible.  I hope you have a good week!

A cancer update & why you shouldn't cook with a cold

Cancer Update - With switching the chemo to every other week infusions, my white blood cells and ANC have stayed higher than before.  My platelets still go low but not so low that we have to skip a treatment day like was happening on the 2 week on/ 1 week off cycle.   I just have to take some bleeding precautions.   This month, I had what is hopefully my last bone building infusion.  I've officially met the 5 year point on those every 6 months.  I will be having a bone density scan over spring break to see where things are, and then the official decision whether to stop or go a little longer will be made when I see my oncologist on 3/31.   Please pray that bone density will be good, and that I can stop those infusions.

My last pet scan was in December; so, it is time to have another one to see where things stand.  I will be having that on 3/27, and getting the results on 3/31 as well.  My tumor markers have gone back and forth a bit the last few months, but my oncologist is considering them generally stable and still in the normal range.  I would greatly appreciate prayers that the pet scan will be stable or show regression.  

I feel pretty good, and am functioning well on this chemo now that we've found the right combination of medicine and time.   In general, I think my life is pretty well put together considering everything, and then there is an afternoon like this one (or really just the last hour or so) that makes me feel like a complete train wreck.   I am staying in today b/c of some cold symptoms, and decided that this afternoon would be a perfect time to brown some ground beef and make some spaghetti w/ meat sauce and taco meat to freeze for lunches or dinners later.  I typically cook in larger quantities and then freeze for later rather than buying frozen meals. I had also hoped to do some sloppy joe meat, but you'll see why that didn't happen.  

So, everything is going well, the beef is almost browned and the spaghetti sauce is ready for me to add the ground beef.  Then I realize that the sloppy joe mix calls for tomato paste which I don't have.  No problem I'll just improvise with some of the spaghetti sauce.  So, I have a little cup with some sauce on it to the side.  I start transferring meat into the sauce and then I hit the skillet causing the handle to hit the cup spilling it down the counter.....as I'm trying to pick it up to minimize the damage, my arm  hit a hot portion of the skillet and sent ground beef flying in the air to the floor.  ( I still don't know how I managed to do that).  With the amount of meat & probably poor substitution sauce  no longer available, I scratched the sloppy joes and cleaned up the counter & floor. The water is now boiling, and I'm trying to add angel hair to get the pasta cooking. I managed to then hit that hot pot with my arm, the box of pasta when flying and angel hair was now all over my floor.   I  wanted to throw the towel in at this point, but I was not going to let this simple meal defeat me.   Found a new box of angel hair and finally got to eat my spaghetti after cleaning the floor for the 2nd time in less than an hour.  

I'm not someone who really enjoys cooking to begin with, and I typically just do pretty easy meals, but even I don't normally make this big of a mess out of them. I think I'm going to blame the cold for all of it.  So, lesson learned - never cook with a cold! Lol!

Regression is my favorite Christmas present

Had a pet scan on Friday December 6th and got the good news that the cancer in the lymph nodes appears to be gone and the undefined area in the liver is not lighting up as much anymore.  Still there in the liver but better.  So, the most recent SBRT and new chemo regimen seem to be working!   Who could ask for a better Christmas present than that?!?!?!

We will keep going with this chemo and scan again in about 3 months.   The stomach issues on this med continue to be a "fun" time; so, we are trying a few different options to see if we can get those side effects better under control.  Hoping that this 2nd cycle of 1000mg will start to see the counts staying a bit higher.  Would appreciate prayers for that as well!  

My previous post when I was discussing side effects was definitely written before I got the chemo med, and it is interesting how you can "forget" in just a week how it affects you.   For about 24-48 or 72 hours I have that sick headache like you were dealing with a cold or flu, but thankfully, it is only really the headache not all of the other cold/flu symptoms.   Even with that, though, I could be dealing with much worse so am thankful for how it is all going.  It definitely helps in dealing with any of the side effects to know that the chemo is working!

I appreciate your prayers that regression will continue and that the side effects will be as minimal as possible.   Hope that you have a happy holiday season!

Another chemo cycle, another dose reduction

I'm sitting in the infusion room and currently getting hydration before my 4th cycle of Gemzar begins.  This chemo is given in a 3 week cycle (Week 1 - labs, see the dr, get infusion; Week 2 - labs & infusion, Week 3 - just labs/off week for chemo), and even though I will be on this chemo until my cancer grows (not a set number of cycles) , I still pay attention to the cycle number so that I know how long I get on the treatment.  Every new cycle is a little victory :)

My initial dose was over 2000 mg, but as mentioned in the last post, we had to reduce it in week 2 due to how low my counts went.  We stayed on the 1580 dose through cycle 2, but due to my low counts, we reduced it on cycle 3 to 1350 mg.    While we expected my counts to get better with the lowered dose last cycle, they actually went even lower than before.    So, my oncologist is doing another reduction to 1060 ml to hopefully help with the counts.   We of course need my treatment to be livable, but it does make me a little nervous that we have basically cut the dose in half.   So, really hoping that it will still work for me at this amount.  Balancing life and treatment is always a bit of a tricky thing. 

This chemo affects many counts but white blood cells, red blood cells,  hemoglobin,  platelets, and neutrophils have been the major ones that have tanked for me.   This causes me to be anemic and experience more fatigue than I've had in the past.  I'm still able to work without a problem, but I am having to make some changes and adjust extra activities to ensure that I have the energy to do what I need to do.   While I have some stomach issues, generally, it is pretty well controlled; so, the fatigue is the worst physical side effect that I deal with.     

I can't really tell physically when the platelets, white blood cells &/or  neutrophils (or ANC, it is how much your body is able to fight off infection) are lowered, but they are the ones that I have to be most careful about.  Gemzar is apparently a platelet killer, and it has definitely been that for me. The lowered platelets create a bleeding risk, and then I have to be super careful to avoid cuts, avoid meds like NSAIDS, etc.   The ANC has been going into mild & moderate neutropenia each cycle.  Since your body can't fight infections when neutropenic you have to be really careful to avoid germs and getting sick.   This makes me have to wear a mask, be careful of being in large crowds and even quarantine myself. The 2nd weekend tends to be the worst, &  I've  had to basically quarantine myself to avoid coming in contact with any germs during that part of each cycle.  Because I don't feel bad during those times, it makes it harder to stick to being stuck in my house, but I know that the risk is too great to play around with it.   My oncologist actually just walked by and said that at this new dose there is a chance that we can avoid going neutropenic.  (Which of course I heard in the "so, you're telling me there's a chance" voice) I really hope that will be the case.   I feel super self-conscious when having to wear a mask,  but my students have been really good with rolling with it.  I've even got a box of masks in the classroom I use most often, and they have been helpful by putting a mask on if they are feeling a little under the weather, etc.     Wearing a mask and the dose reductions that have been done have helped me to be able to teach all of my classes and not have the chemo interrupt my work which I am so thankful for.  

I will be having a PETscan on Friday 12/6, but won't get the results until a couple of weeks later.   Its a longer than normal wait, but I am getting to take the trip to Israel with my parents that we had planned before I started this treatment.   I'll have my week 3 off week  for this cycle, and we will take a 1 week break and then restart treatment once I return.   I am so thankful that my oncologist believes in her patients being able to truly LIVE their lives and make the most out of all of their time.   This will be the first scan since the August radiation as well; so, we will be seeing how all of this has worked.   

Please send prayers and/or good thoughts that this chemo & the previous radiation are working to keep things stable; a reduction would be  even better, but in stage IV world stable is still a really good thing. If you could add in that the counts will keep me out of the most dangerous zones & avoid being neutropenic, I would greatly appreciate that as well.    I'm so thankful to have a team that works with me and helps me have the best quality of life possible while dealing with the treatments.    

Gemzar so far...

Cycle 1 of Gemzar was interesting as we began to learn how my body is going to react to it. In week 2, my bloodwork showed that my counts  - white blood cells, ANC (which is how neutropenic or susceptible to infection you are), red blood cells, hemoglobin, etc.  all went way down.  There was some concern about whether they were too low to do the 2nd treatment, but the decision was made to reduce the dose by 25% and go ahead with it which was a blessing b/c of the recitals the following week.   I was put on a mini-quarantine and had to avoid people as much as possible.  I was still able to teach wearing a mask, doing online activities, and/or using microsoft teams to give "live" lectures online.  My bloodwork on Monday in week 3 showed that the counts had gotten lower but the lowered dose had kept them from a huge drop.  My liver enzymes had shot up 4-5x what they normally run for me though.    Thankfully, more labs on Friday showed that those had come back down by about half and my other counts had started to go up a bit.   I started cycle 2 yesterday, and it will be a bit of a wait & see game as to whether the counts do the same thing this time or if it changes due to being further away from radiation.

Side-effect wise outside of counts, I've had a little bit of a skin reaction. I have super sensitive skin so it wasn't a huge surprise, and thankfully benadryl before treatment has seemed to help that.    There has been quite a bit of nausea, but my doctor has added a stronger anti-nausea pre-med to hopefully help with that as well.    Since we started chemo the day after radiation finished, the side effects may have been worse, but we don't know that for sure.  I've definitely battled some fatigue, but that isn't horribly surprising with chemo starting right after radiation either since both are known to cause fatigue issues.   With the recitals last week & everything else the past month, I also had to push through things a bit more; so, I have been instructed to get more rest this cycle and not push as hard.  Resting is always a hard thing for me, but I'm going to try as I know I need it, lol.   

 I was told that on Gemzar, some people's hair thins but most don't have hair loss.   I was expecting a little more shedding than normal, but my body likes to be "special" in these things too I guess.   On Friday night, hair was coming out every time I ran my hands through it, and within an hour, I had lost a pretty large "toupee" worth of hair .  Thankfully, I have a ton of hair (probably enough for 4 or 5 people, it used to take 2 hours just to roll it in the old "perm" days).  I tried to avoid running my hands through it, but I knew that wouldn't really help  since I had that "hair loss" feeling of my hair being tightly cinched even though there was nothing in it.    On Thursday night for my recital, it took 2 clips to hold back the right side of my hair.

By Saturday morning,  it only took one for the same hairstyle.  

  I continued to lose quite a bit the next 3 days as well; so, I went ahead and got it cut shorter yesterday after chemo so that it isn't as hard if more comes out .and that if some sections are thinner it won't be as obvious.   I know that people may look at these pictures and think - you  still have lots of hair (which I know, but some sections are much thinner than normal) Being a little proactive helps me to not worry as much about it as well.  My doctor said I probably would need to avoid coloring it as that could cause more to come out....so shorter will make that process a little easier as well.

I am really happy that I was able to do both recitals last week.  It was so much fun, and I'm very grateful to have a team that will work with me to ensure that I can still do some things like that.   Here's hoping that this cycle will go well and maybe level off count wise so that we have a better idea what to expect in the cycles to come.  Appreciate prayers always, and hope everyone has a good week!

Month of Insanity

The title pretty much says it all.  The last month has been insane!

So here is a little timeline:
Friday 8/16 - Found out previous cancer gone but new grew - so more SBRT & new chemo coming
Monday 8/19 - Went to radiation oncologist for 3 month check up & to start new SBRT process
Tuesday 8/20 --  The "MRI that wasn't" due to insurance complications
Wednesday 8/21 - MRI at 7 am that only happened b/c of a caring person at check-in that fought to get the right paperwork there;   Came home in afternoon to find that there was water damage to my laminate floors due to an AC issue
Thursday 8/22 -  FC classes start / SBRT simulation appointment
Friday 8/23 -- Insurance adjuster comes regarding floors
Saturday 8/24 -  Get 3 estimates on floors
Sunday 8/25 - Water mitigation company comes & tells me that they will begin tearing out my floors the next day. Wonderful friends from church help me get everything boxed & moved as needed.  (10 people got it done in an hour -  it would have taken me all night - so, so appreciative!)
Monday 8/26  - Floor tear out & chaos begins;  Find out that there was a complication with my SBRT  sim & have to go back to do it again
Tuesday 8/27 -  SBRT sim take 2 & hiring/signing paperwork for flooring company
Thursday 8/29 -  SBRT treatment 1
Friday 8/30 -- Thanks to a wonderful friend, I ended up at the Florida Georgia Line/ Dan & Shay concert which was such fun & a welcome reprieve

Tuesday 9/3 -  Move to my parents because flooring begins ; SBRT treatment 2
Thursday 9/5 - SBRT 3
Monday 9/9 - Flooring/ baseboards get done
Tuesday 9/10 - SBRT 4 has complications and has to be rescheduled; a wonderful friend begins the process of painting needed due to new baseboard and portions of wall being removed
Wednesday 9/11 - SBRT 4 actually takes place
Friday 9/13 - painting ends/  start process of getting house together
Saturday 9/14 - Move back to my house
Monday 9/16 - Final SBRT
Tuesday 9/17 -  Begin new chemo  - whew!

Besides all of the cancer and house stuff, there was also teaching all of my classes at FC and online  &  trying to rehearse a couple hours every day for my recital that is coming up.  My main goal was to be back in my house by the time I started the new chemo, and I am so thankful that it worked out. There are still lots of boxes and things in the wrong place, but I'm home and that is because of the wonderful support of family & friends over the last month.   Thanks for indulging my whining about the craziness, lol!  Plus, I love my new floors and wall color!

The new chemo  (Gemcitabine or Gemzar) has an infusion once a week for 2 weeks and then a week off where I will get labs done.   There have been some side effects such as nausea, fatigue, & headaches that I'm figuring out how to manage.  I also had a skin reaction for the first 3 days that required Benadryl / watching.   I was still able to do all of my teaching, rehearse/ practice, etc.; so, I am very thankful that it seems like the side effects will be manageable.  And let's be real, after the month I've had....who wouldn't be a bit fatigued, lol.   Once this first 3 week cycle is done, hopefully, I will have an idea how to best manage the side effects for the future.

I've had people ask how long I will be on the chemo, and when we will scan next.   This chemo will be my treatment for as long as it works.  I will always be on some type of treatment for the rest of my life, and we hope that this chemo will work a long time.   After SBRT, they wait 3 months to scan due to inflammation, etc. being possible for that long.  So, sometime in December will probably be my next scan.   We are doing tumor markers regularly.  After radiation, I expected that my tumor markers would rise as the protein being measured can be from both live & dead cancer cells.   I was pleasantly surprised that the markers went down some so that seems really promising to me!

It was a crazy month, but thankfully, the month got topped off in a great way by a visit from one of my closest friends and the FC leadership dinner that I was able to attend due to the generosity of another friend.    It was a great experience to get to  spend time with both of them and get to hear and meet Steve Forbes.

 I'll have chemo again this Tuesday and then my week off. My oncologist & radiation oncologist helped plan the SBRT and beginning of chemo  so that my off week would correspond with my recital.  I'm so thankful for this as I've been planning and working on this recital for quite some time.    I will get to perform at FC on Tuesday 10/1 and then again at HCC on Thursday 10/3 at their Ybor Campus.   Friendly faces in the audience always make a performance better if you are local and could come out for either one!

I would really appreciate prayers that this chemo will work and keep any cancer from growing with as mild of side effects as possible.   A little less stressful next few weeks or months would be wonderful as well, but it will be what it will be!    Thanks for reading, and I hope that you have a wonderful week!

Radiation worked but chemo didn't

I had my pet scan this past Monday and got the results of that today.  The good news is that the radiation worked.  The lime sized liver tumor and the cancerous lymph nodes near the liver that lighted up in April are no longer there or lighting up.  The bad news is that the higher dose of chemo did not keep new growth from occurring.   There is a new problem area in a different section of the liver and at least 3 retroperitoneal left aortic lymph nodes lighting up.   I had received my tumor markers on Tuesday, and they had gone up slightly (after 2 months of going down) which had me worried about something like this.

My oncologist had already spoken to the radiation oncologist that worked with me in April/ May.  That dr  believes that we can do the SBRT on the new spots, and thankfully, I already had a follow-up appointment scheduled with him for this Monday.   Hopefully, we will be able to get going on the SBRT soon.

I have stopped the previous oral chemo, and that has to clear from my system.  I will have to wait a week or two after the new radiation is finished, and then I will start a more traditional, iv chemo called gemcitabine.   It comes with lowered white blood cells and some traditional chemo side effects, though not as much hair loss as some others,  but it is generally well tolerated if needed to be on it for a length of time (which is what we are hoping for).

I'm a bit nervous to go without any treatment even for a short time since the new spots grew on the previous chemo, but taking the new one with the radiation is not possible due to toxicity.  A "cancer friend" has compared this to playing "whack-a-mole", and I thought that was a good description. Its a bit of a crazy feeling.   I would really appreciate prayers that we are able to get on to the treatment quickly and that it works as well as possible!  

7 year cancerversary

Today marks 7 years since I got the call confirming that it was cancer, and honestly once we knew it was metastatic/terminal, I never expected to get to 5 years let alone 7.  Making it even more wonderful is that I am at 7 years and while I've dealt with progressions, I am doing better than I could ever have imagined at this point.    So, so thankful!

I've primarily been posting elsewhere this year and not updating here; so, if you've seen it on Facebook, you can skip this paragraph.... In August, we had to switch to an oral chemo option called Xeloda due to some progression.  This is the last of the "easier" drugs as iv chemo will be what follows when this one fails.  It seemed to work for about 7 months, but in early April, a scan confirmed that both the liver & lymph node areas had grown.  Luckily, my oncologist was able to confirm with a radiation oncologist that a very targeted radiation called SBRT could be an option.  I did 5 SBRT treatments at the end of April/ 1st 2 weeks of May.  Once the radiation was done, we increased the amount of Xeloda per day (taken 1 week on / 1 week off).  Tumor markers have been done twice since the SBRT, and both times they have come down.  I have a petscan on Aug 12th & will find out results on Aug 16th.  I'd appreciate your thoughts & prayers that the scan will show that there has been regression.  

  I get asked a lot about whether or not I'm on treatment and why, and even if there is regression or I get to No Evidence of Disease again, I will always be on active treatment.  It is not preventative but rather to keep things in check as cancer is not always detectable on scans and/or can go dormant for a while but wake back up with a vengeance.   Once you are stage 4 /metastatic breast cancer, they will never consider that you are cancer free.  Most recently, the liver tumor was 6 cm, and there were 2 lymph nodes with cancer.  Hopefully, the next scan will show reductions in both, but either way I will continue with treatment.

 People also comment quite often on how much I travel (which I know is a crazy amount) and ask questions about why I do that.   My best explanation is always that my chance to travel  is now before I go on a treatment with bad side effects or even just have treatment requirements that make it impossible such as a weekly infusion.  Once you hear that "terminal/ treatable but not curable" statement, it puts things in a different perspective as you know you can't wait for retirement or that "better time" that so many wait for.  I have had several friends that were metastatic and have passed in the last 7 years that had severe side effects that kept them from doing many things.  My side effects are very livable right now, but just being on the chemo has put some obstacles in my path for some types of things that I used to enjoy doing when we'd go to North Carolina such as hiking, being in rivers/lakes, etc.  My time for travel is now as I never know what tomorrow may bring. (I know that is true for everyone, but a little more pressing in my type of situation) The more I travel and see all of the amazing things around the world, though;  the more places that are being added to my living list.

I've thought a lot the last few days about all the things that have changed over the last 7 years, and there have been so many blessings. Two of those are my work & health insurance situations especially as relates to my desire & ability to travel.    When first diagnosed, I was adjunct teaching a few classes for FC,  1-2 classes online for St Leo , and a class online for Strayer per semester.   I was paying for insurance that had an incredibly high deductible & out of pocket and not making consistent money as adjunct teaching can be very unpredictable.   Six years ago, HCC Southshore hired me as an adjunct to teach a music lit class on campus with the goal of getting the class put online.  I now teach multiple sections of the class online for them year round.  Five years ago,  I was hired full-time at Florida College, and I love the variety of classes that I teach with them from music lit to helping our future music educators.  This was also a great blessing with my health insurance.   I stopped teaching for Strayer, but about 2 years ago, I was asked to help create & teach a music and culture class for USF online.  I've now taught that class for 5 semesters.  While one job opportunity ended, I've been very blessed with all of the others.   I really enjoy the on-campus teaching at FC during the school year, but also all of the online teaching.  I didn't set out to do all of this,  but it has been a blessing for me.  It does mean that I am teaching year round and on many different school schedules, but the wonderful thing about teaching online is that I can do it from Venice, Italy or Tampa, FL just as easily.  These opportunities have allowed me to pursue my travel & living list more than I could ever have thought possible 7 years ago.

There are so many other things that have changed, but I have to mention that the past 7 years have added 2 nephews and a niece that I dearly love, and keep me on my toes!   I've been able to see my oldest nephew graduate high school and now work with him as a music education student at FC.  My second nephew will be a junior in high school this coming year, and I fully expect to see him graduate in 2 years as well.   I'm so thankful that I have been able to be here to see them grow and change, and I love them dearly too!

This date is always hard for me as there are so many ways that cancer has changed my life that could be considered negative,  but I have so many blessings to count as well! I am thankful for every day that I have with my family and friends, and while I hope no one else has to go through cancer, I realize that it has given me a different perspective on life and so many things that I can now appreciate as well!
 Happy 7 year Cancerversary!

Brighter is not always better

The past few months have been very busy with work, traveling, and getting to see family and friends. This February, we celebrated our 25th reunion from Florida College.  That does not seem possible as we are still SO YOUNG (at least at heart).  It was wonderful to see those that could make it.  As so often happens during lecture week, though, I caught a pretty nasty virus.  It made me have to stop my chemo & delay it for a week or so.  

Over spring break, I had an amazing trip to the Galapagos.  It was fascinating to see the animals that are only found there and enjoy walking on and snorkeling around the islands.   If you have any desire to do this trip, I strongly encourage you to make it happen.  It is definitely worth it!  I say that even after I came back with the Ecuadorian bug to beat all bugs.   I was horribly sick to my stomach for over a week, and chemo again had to be stopped and delayed.  

These delays had me pretty nervous because my February tumor markers had risen a little bit.   A Petscan & my bloodwork were done this past Friday, and I met with my oncologist to get the results today.   The good news is that there are no new tumors.  The bad news is that the 3 that are there (1 in liver & 2 lymph nodes) each got bigger & are shining brighter.    The radiation that you are injected with for the petscan makes cancer glow & the brighter it glows, the more active the cancer is being.   My CA27-29 tumor markers raised another 10 points proving that they are still a good indicator of what is going on inside.

We are in a bit of a conundrum.  My oncologist is looking into whether there are any clinical trials that  would be a good fit.   There also is concern that the difference may be the breaks. So, barring a great clinical trial option, we are going to give Xeloda another month.  Currently, I've been on 2500 mg a day (1 week on / 1 wk off).  We are going to try to raise that a bit by alternating 2500 & 3000 mg every other day to see if that would work.  After 2 more cycles, we will run the tumor markers again. If the revised dosage can keep me stable or have regression, we will try to stay on it for as long as we can.   When we need to change, either next month or later,  it will be to a more traditional IV chemo as what I'm on currently is the only true pill chemo option.

Cancer is a tricky beast and for lack of a better description, learns how to work around the medicines that you throw at it.  Eventually, each treatment will stop working....you just never know when that point will be. Since mine became active again, I have been going through basically a treatment every 10 months to a year.  I did express my concern about this because I have a relatively small amount of cancer compared to many metastatic patients.   Some oncologists wait to change medications until the patient has side effects.....I didn't have any liver side effects even when my liver was covered in tumors.  My oncologist believes in being a bit more aggressive and changing when it is obvious that the drug isn't able to at a minimum keep things stable.   Her goal is to keep as small of a tumor load as possible & possibly get that treatment that will fight it all the way back for a little while or at least give best quality of life for the longest possible time.  This strategy fits with my personality and how I want to address things, but it can be a bit scary to watch the available treatments get checked off the list.      There are still several options available, don't get me wrong, but watching the list get shorter is still difficult.  

I am currently in my off week, but will start the slightly higher schedule on Monday.  I would appreciate your good thoughts & prayers that the higher dose will be effective if possible, but if it is not the right drug/amount for this time, that we will know and be able to get me to a medicine that will be more effective.    I am so very thankful to have the oncologist that I do and to have so many people who are praying & thinking of me.   Even in news that could have been better, I know that I am blessed.

Forward is forward or in my case regression is regression

I have been on my new oral chemo, Xeloda for about 3 months now, and I had a scan last week. The last 2 tumor marker blood tests taken had gotten lower which was a positive sign, but I was still nervous for my appointment on Friday to find out the results.    Last scan had showed 2 areas of possible metastasis in the chest wall and spine.  The radiologist thought it was mets, but my oncologist wasn't so sure.  Either way, those 2 spots were gone.   Last scan also showed 2 liver tumors.  This one showed a larger liver tumor, but said the 2nd one was part of that not something different.  So that is a bit confusing for me to know exactly what is going on, but either way, it did not light up as bright which is good.   The 2 lymph nodes near my liver both shrunk and dimmed.  

I was a little surprised at how big the liver tumor is. Somehow, I pictured it much smaller than what it is measuring; so, that took me back a little bit, but overall it is still regression.  I wish it had knocked it all out already, but I have to be thankful for every bit of progress in the right direction no matter how small that may be.  

I take this chemo 1 week on/ 1 week off with pills at breakfast and dinner.  It has given me the standard side effects of stomach problems along with  hand/foot syndrome.   My hands regularly look like they are peeling, like from a sunburn.  I am constantly putting on lotion as you can't prevent it happening, but you can hopefully manage the peeling through lotions.  I have specific udderly smooth lotion that  I've been told to use twice a day,  but the ones for the middle of the day do not seem to be cutting it.  So, if you have any really good lotion that still has water as its first ingredient, that you'd recommend please let me know.  I'm on the hunt for something that I don't have to apply every 45 minutes.    I've had a few mouth issues as well, but mostly sensitivity to spices not really sores; so, thankfully, nothing as bad as the last treatment.  

I really appreciate all the prayers and good thoughts throughout all of my treatments, and I would ask that you please continue those.  Always hoping for regression and knocking those little cancer cells out!    Thanks so much!!

Time to Make a Change

Since March, I've been on "borrowed" time using a drug that is not really supposed to work by itself this long into treatment. In May, everything was basically stable; so, we decided to ride it out as long as possible with checking tumor markers every month until doing a PETscan this past Monday.  I got the results of that PETscan today, and unfortunately, it is time to make a change.

The lymph nodes were bigger & shining brighter.  The liver lesion we'd been watching was shining less bright, but it appears another lesion has appeared. There were also 2 spots that light up that we aren't sure whether they are cancer or not.  One of them is at vertebra T10, and my oncologist thinks may just be regular bone marrow activity.   The other is in an area of soft tissue near the end of my ribs which could also be inflammation.  Both were listed as possible for metastasis, but my oncologist isn't sure.  We aren't going to do any more testing for those places at this time, though, because the treatment would be the same either way.

I will be starting an oral chemo called Xeloda.   This comes in pill form, and I will take 2 pills with breakfast and 2 with dinner for one week on then one week off as long as the medicine is working, which we hope will be years.  This dosing has been found to help keep people from getting  side effects and/or help keep them in better control.  The side effects for this drug are primarily stomach issues, hand/foot syndrome (where chemo leaks into capillaries and kills tissue causing redness, pain, and peeling), and low white blood count/ higher risk of infection.    Starting with this dosing will also provide the ability to go a little higher or lower depending on side effects and cancer response.  

My oncologist understands how important being as free as possible to work, travel, live a normal life, etc. is to me, and this option, will be the easiest for that.  It is never fun to know there is progression and have to change medicines, but thankfully, I've had a few months to know that this was the next option and prepare for it.  I hate that I will be starting it the first week of classes since I don't know what side effects I will or won't get, but that could be a blessing in disguise as well since those first meetings are usually about the syllabi, etc.  and not necessarily a lot of "meat" of the class.

Today was also my regular bone building infusion, Zometa,  along with needing an iron infusion.  The iron one was easy, but the Zometa comes with some fun side effects of flu-like symptoms and bone pain.  So, this may be a weekend for me to just hunker down and catch up on netflix  or reading until the side effects go away.  I think I've said this before, but the weirdest side effect is the bone pain.  It feels like something is trying to burrow its way out from the inside of my bones. Needless to say, tylenol & ibuprofen are my close friends this weekend, lol.

Sorry if this is a bit of a debbie-downer blog post this time.   Hopefully it doesn't come across too negative or anything, but this is my reality.   My oncologist did tell me that she had a patient who had been on this chemo for 6 1/2 years, and I know of a couple of women on a breast cancer board that I belong to that have been on this chemo for 5+ years.  So, you never know which treatment might be the magic bullet for you, and I hope this will work as well as possible with as few side effects as possible for as long as possible.    Also, I'm so thankful that I was able to do my crazy summer of travel.  It feels like such a blessing to have felt that good and been able to enjoy that before having to make this shift in meds.

I'd really appreciate any prayers for this treatment to work and have minimal side effects.   Thanks so much, and I hope you have a wonderful weekend!

A little reprieve

Last month, my tumor markers had risen, and we scheduled a petscan for after my Baltics cruise.  My oncologist told me at that time that we would definitely be making the change to oral chemo, Xeloda, at my next appointment (which was today).  I had asked for prayers that the exemestane would work as well as possible in the meantime to keep things at bay.

The cruise was amazing and one that I would recommend to anyone.  I learned so much, and saw so many interesting sites.  We arrived home Monday evening, and I had my petscan this past Wednesday.   I had spent the past month preparing for the change to a more traditional chemo and had a sense of peace during the scan process.  I was ready for whatever this new drug would bring.

Jump to today, and I got a little reprieve.  While my tumor markers rose a few points more, the petscan results were mixed and basically stable.  The lymph nodes had gotten smaller & less bright on the scan, but the liver lesion had gotten slightly larger and brighter.   My oncologist ended up giving me the option of staying on the exemestane (an anti hormonal that I'm currently on) for another few months or doing the switch to Xeloda.

When asked which she would do, she stated that she would stay on the exemestane for the following reasons:
 * basically a stable result on the petscan and one that in a clinical trial would not be considered progression or necessitate a medication change
 * the longer you can get out of any one drug the better as there are only so many medication options out there
 * she has had patients go months in this sort of stable-ish type of pattern
 * if there was a cure, she'd have me change quickly, but since all of the medicines available are going to control not necessarily cure, it is better to stick with the one that has really no side effects for as long as possible.

I was worried that I would make a decision based on wanting to do the many trips that I have scheduled for July/early August, but after discussing all of the above with her, I feel very comfortable  and happy with the decision to stay on the exemestane for a while.  Also, if the current medicine is going to work on only one of the areas (lymph nodes or liver), it is actually better for it to work on the lymph nodes as they are not in a place where we can go in and remove them, but we do have some other options for the liver, such as ablation, if needed in the future.   My liver function tests have also decreased to almost normal which is a good sign.

So, I get a little reprieve from the big chemo guns for right now.  We will be checking tumor markers every month and scanning every 3 months.  If there is a drastic tumor marker change in any month, we would go ahead and scan as quickly as possible.  Even if this only gives a month or two more on the easier treatment, it is definitely worth it!   I am so appreciative of all those who've prayed for me and this situation, and would ask that you continue to pray send and/or send good thoughts that this medicine will work for as long as possible.  I am also so thankful for a doctor that is willing to do what is  needed to keep me living as good of a quality of life as possible while always having my best interests at heart.    Hope everyone has a wonderful summer!

A hiccup, but same basic plan

After what felt like an incredibly long wait of a week, I heard from my oncologist today.  I knew that the news wasn't going to be what I hoped b/c it does not normally take that long to hear about tumor markers.  My tumor  markers had risen which put a kink in the plan from the previous week.  The one thing I knew was that when I did hear from her she would have decided on a plan.

After reviewing my scans, how fast the tumor(s) have grown, etc., it was decided to stay on the same basic plan until the ptscan as I still really need to heal and my tumors have not been fast growing since it returned. I won't be doing tumor markers again until we do the scan b/c she decided it wasn't worth the stress to me. We also discussed whether to do the ptscan before or after the trip, but in the end, she said it wouldn't change anything except for making me stressed as she didn't want me going out of the country that close to starting the chemo.  She wants me to be able to do the Baltic Capitals cruise, and the scan/ next appointment will be done the week we are back.  The assumption is that I will begin the Xeloda after that scan.     I will still take the aromasin now; so, there will still be an active treatment that hopefully is at least holding things at bay a bit.   She reiterated several times that the time is needed to make sure that I have healed.

So, while it is a hiccup, it really hasn't changed the plan significantly from before.  I still appreciate prayers that the aromasin holds things at bay while I heal and that we are making the best decisions for me.    Thanks so much, and have a good weekend!

New plan

I attempted the 5 mg dosage of Afinitor and made it through 3 doses before the bad side effects began again.  So, that medicine was stopped, and I had to wait to see my oncologist yesterday.  It was a really tough week of waiting and healing.  Knowing that my future path was most likely going to be going on some form of more traditional chemo drug felt like a major crossroads, especially when I still have such a small amount of cancer in me.  My oncologist had told me that a pill chemo would probably be our option to keep me as free as possible; so, I researched that drug and tried to find out all I could before my appointment in order to know what questions I should  ask.

 During the last 5 months, I have been on a combo of drugs the Afinitor (or as I like to call it the big bad one that my body hates) and Aromasin which is an anti-hormonal.  Even when I was off the bad one and trying to heal, I still was taking the anti-hormonal.  What we didn't know in our discussions at my appointment in March  until after the tumor markers came back is that the anti-hormonal seems to be doing something as my tumor markers still came down after only 4 days of the 7.5 mg.  It was only .7 but down is down.   This made me wonder if staying on the Aromasin for at least a little while could be an option.

One of the most important things I've learned in this journey is that you have to advocate for yourself and research the treatments. There are two sites, breastcancer.org & inspire.com, that I've used a lot to research and get information from others doing the various treatments.   I trust my oncologist, and thankfully, she welcomes questions & understands that for me knowledge gives me some sense of control, which is an important factor when you feel like something else is controlling your life in many ways.  I want to share the thought/appointment process about determining a new plan because many don't realize that as the patient, they will have to make some decisions about what to do.

My oncologist came to our appointment with two options.  The first was the chemo pill, Xeloda, alone.  I had researched this drug and knew the major side effects that came with taking it and also a little about the traditional doses, dosage schedule options, etc.   The second was going on a clinical trial that would guarantee I got Xeloda but could also pair it with  a new drug.  But, this trial would have a placebo arm; so, I may or may not actually get the new drug at all.  After she told me just a little about these two options, I asked if there was any chance of staying on the Aromasin for a little while since  it did seem to be at least keeping me stable.  Some people take the aromasin alone as a first or second line drug, but I wasn't sure if it would still be a possibility as a 5th line drug by itself.

 My oncologist looked first at a report from foundation one where we had sent my biopsy from 2016.   Apparently, this report includes a marker about whether or not the cancer has become resistant to the anti-hormonal therapies.  Thankfully, my results did not show that resistance.  We also discussed the trips and things that I have coming up this summer.  I made it clear that treatment was more important than any trip, but we did discuss that for the Baltics capitals cruise in May, it might be better to not be taking active chemo.  I definitely don't want to risk seeing the inside of a Russian hospital!  She did say that staying on the aromasin might be an option for now but still seemed to be thinking on it & not quite sure.  So, I said, I'm good with whatever you think, and want to do whatever you would do if  you were in my shoes.  I did not want her to think I was pushing for one way or the other if she didn't think the Aromasin was truly a viable option.

After looking at some blood tests and other things, she said that she thought staying on the Aromasin for right now would be the best plan.  She wants me completely healed before I started something else anyway.  So, the plan for now, if the tumor markers taken yesterday come back stable or reduced, is that I will stay on the Aromasin and retest my tumor markers in 3 weeks.  If they are okay at that time, we will do a petscan after my trip in May.  If they have jumped higher, we will try to get the petscan done before I leave.  After the results of the petscan, we will have to decide what to do from there.  The Xeloda chemo options are still very much on the table for that time, but there is a little reprieve.

Deciding whether to do a clinical trial or not is a really hard decision.  Metastatic breast cancer definitely needs more research, but there are a lot of ifs in doing this clinical trial:
* you don't know whether you'll actually get the trial drug or not
* will I qualify for the trial drug if approved later if I've already done Xeloda by itself?
* the trial is not done at my home office; so, 30 more minutes of travel each way would be tacked on to every appointment, and there are a lot more appointments potentially involved in a clinical trial.
* there is little flexibility on a trial, and I am still trying to work, etc.
* the final aspect is a biggie for me -- The clinical dose of Xeloda is a high dose taken 2 weeks on /1 week off.  From everything I've read, most people do better on a lower dose taken 1 week on/ 1 week off.  This helps to control the side effects better.  My oncologist would do the 2nd option for dosing while the trial would do the first.

With all of that said, I think I've  decided when the time comes to go with just doing the Xeloda with my oncologist rather than the trial.  I think the dosing will be better and that I will have the flexibility that I need for working, etc.   It is a bit scary having to make these types of decisions and hoping that what you chose will be the best in the long run for you.   I'm just telling myself that I'm making the best decision I can in this moment, and that I won't look back and second-guess myself later on.  So, I think I've gotten the best possible options from my appointment yesterday that I could have gotten, and I feel pretty confident in this going forward.   Of course if my tumor markers taken yesterday have raised, then we might be back now at the chemo options, but at least, I think I've made the best choice on those that I can for me at this time.

If you've made it all the way to the end of this long post, thanks for reading and hopefully, you've gotten a little understanding about what goes into choosing a new plan.  It is not done on a whim, it is done with a lot of research  from the oncologist and patient.  That is why it is sometimes hard when others say but have you tried this? or that?.  A lot of thought and having to trust the oncologist & your own judgement  comes into play with these decisions.     I would appreciate prayers that we have chosen the right path for now, that the tumor markers will stay stable or reduce and that these medicines will do their job!  Thanks so much, and I hope everyone has a good weekend!

Take 3 coming up

After having problems with both the 10 mg & 7.5 mg of Afinitor, I have been pretty anxious about having to start it again at a lower dose.  My oncologist and her nurse have been touching base with me each week to see how the side effects are healing and have been trying to calm my nerves.  They even moved my appointment up a few days so that we could talk in more detail about this drug and options if it doesn't work again.  During all of the this time off, I have still been on the anti-hormonal drug, Aromasin, that Afinitor is paired with.

Since the ptscan showed that it was working on the lymph nodes, my oncologist thinks it is important to try again.   The thought is that I wasn't completely healed from the side effects from the time on 10mg, and that making sure that I am fully healed this time will hopefully help me to be able to stay on the 5 mg dose for longer.  I'm supposed to wait another week or so and then begin the 5 mg pills.  If I get any of the bad side effects again, I am supposed to immediately stop it.  

We don't want to give up this option if we can help it because unfortunately, this is the last of the anti-hormonal combos that is available right now.  If the Afinitor doesn't work or has too bad of side effects again,  we will be looking more at clinical trials or more standard chemos.  Thankfully, there is an oral chemo that would probably be what we tried first as it would have the least impact on my time/life, but I'm really hoping the Afinitor will work and it won't be needed for quite some time.

I'd really appreciate prayers for complete healing from the previous side effects and that the 5 mg pill will work without bad side effects for as long as possible.   Thanks in advance, and I hope everyone has a good weekend!

So long 7.5 mg, I barely knew ye

I started the lowered dose of 7.5 mg on Thursday night, and by Monday morning, the bad side effects were back.  I had to go to my primary care Monday afternoon for sinus and ear infection; so, just to make sure that it wasn't all in my head or I was just a wimp, I had them check out the side effects as well.   In a stroke of luck, I had the nurse practitioner who used to work at Moffitt and actually knew my drug and what it could do.  She very quickly told me that it was a definite problem, and I needed to stop the drug and call my oncologist's office.   4 doses -- I only got 4 doses in before it became a problem again, but the hospital experience is not one I want to enjoy again; so, I stopped it.

After a bit of phone tag, we got a plan determined yesterday for going forward.  The side effects need to be completely cleared, and we are not sure how long getting them cleared will take as the drug has a pretty long half life.  Once cleared, I will start on a new lowered dose to 5 mg.  Hopefully, this one will work and not wreak havoc on my body.

I keep trying to remember that the drug is failing me not the other way around.  In reality, if even the lowered dose is going to be too much, I hope in some ways that it does happen quick again; so that we can go ahead and move on to something else.  There are still more options in the pipeline, but of course, you never really want to lose one quickly.

So, thoughts and prayers for quick healing and the right drug for me to work would be greatly appreciated!

Mixed results & feelings

The 1 week of being off of the Afinitor became 2 1/2 weeks  as it took longer than planned to get in for the petscan.   My scan was done on Thursday, and I met with my oncologist today.  The results were a bit mixed though she said to think of them as positive.  The lymph node area has gotten smaller & less bright, but the liver area has stayed the same size while getting brighter.  It is hard for me to think of that as positive, but I am trying to get there.

I will be going back on the Afinitor,  but instead of the 10 mg, I will be taking 7.5 mg.  We are hoping that the side effects will be less with that.  If the problematic side effects start up again, I'm supposed to call the oncologist, stop the drug, and we will start on an even lower dose of 5 mg.   The oncologist said we probably would not go any lower than that.  

I have very mixed feelings about all of this.  On the one hand, it did shrink the lymph node area; so, aren't some side effects worth it..., but at the same time, I know this drug, for me, kept compounding the side effects, and at some point they become intolerable.  I trust my oncologist, and so I will have to not let my personal pride or feelings of "failing" the drug stand in the way if the side effects do start up again. 

Honestly, this drug was hard, and I'm nervous about going back on it at all.   Below are some of the side effects that I got previously which might help you understand that feeling as well: 

* mouth sores -- There is a steroid mouthwash to help ward these off, but when you teach and play instruments, this one is not fun

* wearing away of linings -- This is part of why the mouth sores occur, and for me it made my bladder autoimmune start to be much worse as well. 

*rash -- Well, you already know about the fun that this one caused. 

* hardening of skin near fingernails/ losing fingerprints/ losing fingernails -- This one is so weird. The tips of my fingers became really hard which caused pain & splitting there, and then because of the continual skin changes, anything that took my fingerprint wouldn't register.  I'd reset the fingerprint & by the next day it wouldn't work.  Along with all of this, a couple of my fingernails tried to actually come off, which is a pretty common side effect of the drug, but not an enjoyable experience.

*Nausea/ inability to eat much/ weight loss -- The nausea was annoying, but honestly, I've been trying to lose weight for years....so I don't mind this that much, lol!

* blood sugar tripling  - This is what made my infection so difficult to manage b/c within 8 days of going on the drug initially, my blood sugar tripled.  I went from taking the smallest amount of metformin you could take to the maximum dose and adding two other medications as well.  I wasn't aware that out of control blood sugar could make you not heal. In fact, it took until the week of my petscan for my blood sugar to come down enough that I could actually have the scan.  (Guess I'm glad there was a delay in being able to have it)

*cholesterol & triglycerides tripling -- In those same 8 days, my well controlled cholesterol & triglycerides went haywire. Thankfully a medicine has brought it down some, but still not where they should be.

I know that there could be worse side effects, and you never know what the next drug will bring.  So, the devil you know and all of that.  Obviously, I want to stay on each drug for as long as possible, and if this makes that possible and helps keep me stable or regress I'll take it.  I just hope the reduced dose truly means reduced side effects. At least this time, I have the knowledge of what to be on the look out for.   I know how lucky I am to still have this option and others in the pipeline. 

Thank you for the thoughts and prayers over the last few weeks, and I would really appreciate it if you would pray for less/no side effects to be able to stay on a dose that will work the best for as long as possible.