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.