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.