Tuesday, November 7, 2017

Decisions, decisions....

When I've talked to people over the last few days about the decisions regarding the new treatments, the common thread has been that they didn't realize that there was so much that had to go into the thought process.  So, I figured I'd share a little bit of that here now that my decision has been made, & really it was made for me which I'll explain later.  

When making decisions between two options in cancer treatment, there are a lot of grey areas when black and white options would be much easier.  You want to make sure that what you choose will work the best on your cancer but also impact your quality of life as little as possible.  The base medicine which suppresses estrogen, exemestane/ Aromasin,  was going to be the same in either possible option.   The possible trial option was going to be an immunotherapy drug, entinostat, and the option that has been around for longer, everolimus, is actually an immunosuppressant drug originally used to prevent organ rejection but has been found to help breast cancer when paired with a drug such as exemestane.  

Things to think about:
* Trials are not held at my cancer center so I would have to go to either the MLK or Brandon center adding about an hour total to each appointment & my on campus class times were built around the times that my dr is at my center; so, that could be more difficult.
*Trials sometimes have many more appointments b/c they are tracking everything
*I would not necessarily be seeing my doctor at all of those appointments
*Stage IV/ metastatic needs more research & that aspect is important to me
*Does the trial have a placebo arm for the 2nd drug? If so, oncologist won't let me on it because the progression free survival on the combo of drugs is twice that of the one drug alone
*The progression free survival median is about 1 month different based on research between the two combos - so not a huge factor either way
*Side effects are not substantially worse on either drug
BUT the big factor --
*If I don't take the trial drug now, I will lose it as an option in the future as it is only being tested with this one estrogen suppressing drug and only with those having never had the drug before. Unless trials start with another estrogen suppressing drug, it will not be in my arsenal to use.

So, I was weighing a lot of pros & cons, and once the decision is made, you have to just trust that it is the best one for you.  You can't look back and wonder "what if" because that does no good.   My gut kept saying go with the more tried & true exemestane & everolimus combo as it would be less disruptive on my life, but the "we need research" side of me felt pretty guilty about that.  So, I was really kind of hoping that the decision would be made for me and that the trial would not actually be an option for me due to placebo, etc.  

My doctor called yesterday afternoon, and my wish was granted.  The trial wasn't an option b/c of the possibility of getting a placebo and it was not being administered even at the MLK and Brandon centers.  The only location was 1 1/2 hours away which would not be feasible at this time.  So, I'm able to go with my gut feeling without any concern that another option might have been a better choice which is such a relief!   I should be getting the exemestane by tomorrow and will go ahead and start it. Once I get the other medicine from the specialty pharmacy I will add that in as well. 

Sorry this was a much longer post than I expected when I began writing, but hopefully, it will help people to understand all the many aspects that go into deciding which treatment route to take.  

Saturday, November 4, 2017

Time for a Change

Due to my tumor markers being up this month, a PETscan was done on Wednesday morning, and my oncologist called Thursday afternoon with the results.   What she told me on the phone was that things looked a little worse near the liver which indicated that the medicine was not working.  She asked if I could come in on Friday morning at 8 AM to discuss some options and review further the scan.

Mom came with me to the appointment on Friday. When we reviewed the scan with the oncologist, we were able to see that things had progressed some with the lymph nodes near the liver glowing brighter and a little bigger. While it wasn't possible to tell exactly how many nodes were involved, it was still a small number. Also, it has not spread beyond that basic area of nodes that it has already been in.  There also was a spot glowing brighter in the liver which has come & gone some over the last year, but the good thing is that there was not a defined mass.  Basically, for having some progression, this was about the best case scenario possible.  My oncologist does believe that even with a small amount of progression, it is best to go ahead and change medication to avoid it becoming more which I really appreciate.

A couple of visits ago, I had asked what the next step was likely to be, and the physician's assistant said it would probably be a more traditional chemo in pill form.  Thankfully, since it is such a small progression, we are able to avoid that and stay with an endocrine therapy that attacks the hormones.  We will definitely be using a pill form of that know as exemestane or Aromasin.  My oncologist wants us to pair a second medicine with it that will help keep cells from dividing.  The options are either everolimus/Afinitor or going on a clinical trial with the drug entinostat. She was waiting for more information on the trial as to whether they were still adding people and/or whether there was a placebo arm to the trial.  She only wants that as an option if I would definitely be getting the 2nd drug; if there is any chance I would get a placebo, that option is off the table.

My oncologist told me to think about the options and that she would call me later in the day after she heard back from the trial.  Oddly, I didn't hear from her last night; so, I have to assume she didn't hear back from the trial yet.  My oncologist has called even at 6:45 on a Friday night before to make sure that I had information.  There are a lot of things to think about in regards to which option to take, but I'm so thankful that there are options like this.  Every drug has side effects of course (even a benadryl), but these options should have little impact on my life and being able to work, travel, etc. The big goal is still to get back to No Evidence of Disease or if not that, to stay as stable as possible with regression preferable.

I would really appreciate your good thoughts and prayers to make the best decision for me on the options for medicine and that whatever is chosen will work as well as possible.  Thanks so much!

Monday, October 23, 2017

Time to scan...

After one month of coming down a little, my tumor markers jumped back up higher than they were before.   So, my oncologist said it was time to do a PETscan again to see if a change in medication is needed.   With the recital on Monday, I asked if it was okay to wait at least until that was done.  They said it was fine, but they wanted it scheduled ASAP after that.  When scheduling, the person on the phone mentioned that Wednesday, November 1st had availability in the morning which I took.   What I wasn't thinking about was the prep for the scan which is supposed to be few to no carbs/sugar 24 hours before the scan and no eating or drinking anything but water from 6 hours before on.   Not a problem...I've done that many times before.....Then it hit me after I hung up the phone --- the day before is Halloween!  No wonder that morning was still so open.  So, no trick or treating for me this year or more realistically no eating from the one of the nephews' stash, lol.....at least until the scan is over.   I would really appreciate your good thoughts and prayers that the scan will show stable or better, and/or that my oncologist will make the best decision possible for next steps if needed. 

Quick shameless plug:  If you are in the Tampa area, please come here our recital on Monday 10/30 at 7:30 pm in Puckett Auditorium at FC.   If you are not in the area, tune into the live stream at https://www.youtube.com/watch?v=OXev-d0ChHM   If there are any problems with the live stream, please go to Florida College Fine Arts Department on Facebook. 


Friday, October 13, 2017

MBC Day - Alone in the pink party

Have you ever gone to a party that was supposed to be for you, but it felt like you were alone and no one was actually paying any attention to you?  It is not a good feeling, but that is what it feels like to have metastatic breast cancer in Pinktober.   Everywhere I go, I am surrounded by pink reminders whether it is Panera with pink bagels, Tijuana Flats with pink chips, hockey or football games with pink pom poms or other things and any type of store trying to sell some pink item.  Honestly, there have been a few times when I have felt physically ill seeing all of the pink.   Part of the reason for that ill feeling is that it is a constant reminder of my breast cancer, and that can be very hard as you sometimes just want to go out and forget your daily troubles.   The other part is that all of this pink is in the name of awareness and finding it early = cure. Now, I believe that most organizations are trying to do the right thing and have the best intentions possible.  I also know that other cancers would love to get this much attention, and I agree that they should as well.

The  problem is that many of the things being sold have little to no money actually going to breast cancer awareness or research and/or are sometimes even have chemicals that could possibly cause cancer.  Panera's bagels support Moffitt and Tijuana Flats supports a breast cancer research organization.  If I were to buy pink things it would be this type where I knew exactly where the money was going.  Unfortunately, many breast cancer survivors of any stage feel like it has become commercialized and/or sexualized such as save the tatas campaigns when it should be save the mother, wife, sister, friend, etc.  Those with metastatic cancer don't fit the "found early now cured" mantra of the awareness organizations and are often left out of survivor events, support groups, etc., but they are the epitome of the women that we should be trying to help.

The other hard part of this month is that everything is for awareness and finding it early = cure, but the reality is that it just isn't true.  For me, we thought mine was found early as stage 1 in the breast to only find out that it had traveled even earlier to the liver, and I was really stage IV.  Early detection is not a cure.  The stats still say that 30% of women with early stage cancers will recur with metastasis, and 6% of breast cancers are stage IV (metastatic) from the beginning.  Those numbers haven't changed, and an estimated 40,000 women die each year from metastatic breast cancer (the only kind that kills).  Yet, most people will say due to the pink campaign that breast cancer can be cured.  It can't!  There is no cure, only ways of fighting it to hopefully extend life.  But there is a problem even there,  only 2-5% of breast cancer research funds are actually spent on metastatic breast cancer -- the only type that kills. (I know I've said that a couple of times, but I just can't stress that enough)  Metavivor is trying to change that so that at least 30% of funds are spent on the type of research that will help the 30% with metastatic breast cancer.   More awareness needs to be made of these things.

We get one day in the month of pink -- October 13th as metastatic breast cancer day.  If we really care about a cure, then stage IV needs more!

Thanks for reading what is apparently my yearly Pinktober post. Now, for what is going on with me:

My last scan at the end of July showed that I was basically stable (lymph nodes same size but glowing brighter) which was good but also a little worrying as my tumor markers had risen 3 months in a row.  We took a month off from checking the markers after the scan, and I was very nervous before my last appointment.  My doctor said that if the markers were up again then we'd scan again to see if a change of treatment was needed.  The September markers thankfully had come back down a bit which was a huge relief; so, the scan was put off for a while longer.  I did go ahead and find out what they believe the next step will be if/when we do have to change medications as it really helps me to know that a plan of attack exists.  Knowledge is power for me.  My next tumor markers will be run when I get my monthly shots this coming Tuesday.  So, I'd love prayers that the treatment is working, and the tumor markers will keep decreasing.

October is very busy with concerts and recitals for me.  I am performing a joint recital (clarinet & piano) with Adam Booher at Florida College on Monday 10/30 at 7:30 pm in Puckett Auditorium.  I'd love to see friendly faces in the audience!    Along with that, I will also be playing with the FC Wind Ensemble this coming Monday ,10/16, and Florida Wind Band on 10/22. It is always fun to get to play with groups like this, but with all of the rehearsals it makes for a busy next few weeks. So, I'm especially thankful for the couple of days of Fall Break next week.    That's my life in a nutshell! Hope your October is going well!

Monday, July 17, 2017

Take that cancer stat - 5 year edition

Five years ago today, I got the call that I had cancer. I was in North Carolina and had to quickly pack and get home for a doctors appointment the next day.  I had no idea the whirlwind that was about to be before me, and I wasn't sure when or if I'd get back up to this timeshare.  So, it is especially fitting that I'm typing this from the same bedroom where I received the call.  Even better is the fact that the whole family has been here, and we were taking family pictures today and had enjoyed a great weekend together.

5 years --- It seems like so long and a split second at the same time.  My oncologist has always been good to tell me that my cancer was "treatable not curable", but thankfully, she never gave me a timetable. Still, if you do much research, you end up stumbling upon the harsh reality and statistics of the disease.  Only 20-26% make it 5 years while only 2% make it 10 years.  I have to admit that this feels like a pretty big milestone even though I try not to worry too much about the stats.  Thankfully, these stats have gone up a bit (it was 20-22% 5 years the first time I saw it), and new treatments, like the one I'm on, have come about during these 5 years which hopefully will be true game changers.  

I am incredibly happy that I am doing as well as I am, and so I am grateful to be able to focus on the following stats that have occurred in those 5 years:
* 2 adorable nephews and an amazing niece have been born
* I've gotten to watch the teenage nephews in many concerts, half-time shows, etc.
* I've had the opportunity to make wonderful memories with my family
* I've been able to see many out-of town friends that I don't usually get to see and spend time with them
* I've become full-time at Florida College & truly enjoyed the work that I do there and elsewhere
* I've crossed 54 things off my 56 item original-ish living list (the list has grown more in the last few years)  ---the other 2 items will be crossed off hopefully soon with 1 place in August and 1 in December
* I've been able to focus on living and my spiritual life in a different way than many have the opportunity to do.  I wouldn't ever wish this on anyone, but it definitely makes you see life differently.

My tumor markers have been fluctuating, and the last two months they have risen.  I have a PTscan scheduled for next Monday so that we can determine exactly what is going on. I'll be honest....coming up on this date has been a lot harder this year with being back in more active treatment than it was when I was no evidence of disease.  I feel very confident in my team of doctors, though, and I know that they will do everything they can to ensure that I am doing a 10 year edition five years from now.

 I would greatly appreciate your thoughts and prayers that the PTscan will show that I'm stable or there is regression for the results and that I will have peace during this time.  I'd also love thoughts & prayers that things go well enough in the future that the 10 year edition and beyond are possible.  Thank you for all of your kind words and help over the last 5 years! I can't even begin to express how much knowing that I had the support of so many people  has helped me over that time.



Tuesday, May 2, 2017

I'll take regression

 I had my previous PETscan in November, and then it was a month and a half before I actually got to start my new medicines.  My tumor markers increased in that time; so, we are pretty sure I had some progression by January, but we just don't know exactly where or how much.

Fast-forward to results today of last Friday's scan.  The lymph node that we had biopsied has gotten slightly smaller from the Nov scan (originally 3.4x1.8 & now 3.1X1.4) and has slightly less uptake/lighting up than before (originally 6.9 now 6.2) .  So, it is considered that I've had regression of that spot.  There are a couple of other spots that had mild uptake, but my oncologist does not necessarily think it is cancer there.    Especially since we are pretty sure things got worse before they got better, the regression that we can be sure of is a very encouraging sign.  The combo of drugs that I am on  work slower than traditional chemo, and we are hopeful that things will continue to improve from here on it.  

For now, I'm going to be happy with this regression, and be thankful as every moment of stable or regression means more time.  Thank you for the thoughts and prayers!

Thursday, April 6, 2017

Time for an update

I've just started round 4 of the new treatment so I guess it is about time for an update.  I was really nervous about this combination of drugs because I had a friend have a lot of problems on it, but I have been incredibly lucky and had few side effects.  I  don't love the shots, but I sing hymns, supposedly in my head,  to get through the minute on each side. Apparently how loudly I'm humming/singing tells the nurse how much they are hurting as they are administered, lol.   My current hymns are Pierce My Ear (ironic, I know, but it is one of my favorites) and Surround Us O Lord. If you know of any good minute or so long hymns that I could put in the rotation, please let me know.

Along with the shots, I take Ibrance for 21 days of each month and then have a week off. The Ibrance definitely lowers my white blood cells, but thankfully, my neutrophils have stayed above the most dangerous range; so, I've been able to continue to work, etc.  I do have to take more precautions against infection as I could get sick much easier than most.  One of the things that made me nervous during chemo and now with lowered white blood cells is passing the communion as people so often come to church even while sick and often touch the bread as they are breaking it along with the trays, etc.  I have been so appreciative that the people who do the communion at Temple Terrace coC have worked with me on this and provided some individual servings so that I don't have to touch anything.   So, if you see me getting up before communion on Sunday mornings now you know that I am going back to get that and avoid any germs that might come with passing the trays.   I know it might seem like overkill to some,  but I did manage to avoid getting sick during all of the flu and other upper respiratory gunk that went around the last few months. With my lowered wbc counts,  an infection that most could get over very quickly could be quite dangerous for me.; so, doing what I can to avoid it is worth it to me.

There has not been a scan yet to give us any real results , but a PT scan will be done on April 28th.  I'll get the results of that at my monthly appointment the following Tuesday 5/2.    We have been watching the tumor markers which have always been fairly reliable for me.  They were in the normal range when diagnosed in November but they had done a 10 point jump up in the last couple of months. In January when we finally started the medication, they had raised another 7.6 points.  Since it took a month and a half to get everything biopsied and get on the new regiment, it is possible that there was some progression between November and January.   They've jumped around a bit since then, which is a bit stressful, but the most recent result (far left on graph below) is lower than it was when the cancer was found.


Hopefully, this means that things are possibly stable and/or moving in the right direction.  The markers are more about the trend than being a one-to-one correlation.  We'll know for sure what is going on once we get the pt scan done.  As much as I want the cancer gone and NED to return, I keep trying to remind myself that in metastatic world, it is a win anytime you stay stable or have any type of regression.  So, I am praying for any type of "good result", and I would still love your thoughts and prayers for that as well.  

In other news.......Sometimes it amazes me how things work out, and I just have to be so thankful. One of my online colleges has done some condensing of classes and beginning with this summer term, it will be unlikely for me to continue to have 2 sections.  It is amazing though how when one door closes another one opens.   I have been asked to create an online class for USF  that will begin in the fall semester.    It is a new twist on a class that I've taught before, and I'm really enjoying the process of working with their Innovative Education team to create the presentations and put everything together.    

Now I just have to get through the craziness of the last few weeks of the spring semester.  I know you're shocked, but I have multiple trips planned for the summer.  I had given myself a 5 year limit on going trip crazy, and after that I have to chill out a bit on it.  This summer hits that 5 year point which is important for many reasons. 

Anyway,  I'll report back once I have the results of the PT scan.  Hope the next month or so sends many blessings your way!