Friday, May 25, 2018

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!

Friday, April 13, 2018

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!

Saturday, April 7, 2018

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, &, 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!

Saturday, March 17, 2018

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!

Wednesday, February 28, 2018

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!

Tuesday, February 20, 2018

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 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. 

Friday, February 2, 2018

Yay for going home!

I got my get out of hospital card this afternoon, but unlike the monopoly game get out of jail card I am sure these last 5 days will not be free, lol.   So thankful for insurance, and I'll just hit my deductible & out-of-pocket real early this year.

I've been dealing with what we thought was shingles for months now as I mentioned before, and unfortunately one of the spots got infected.  A trip to urgent care 2+weeks ago gave me one medicine which did not seem to be working; a week later at my primary care, she gave me a stronger antibiotic which I gave some time to work, but by Monday of this week, I felt that it was looking worse and continuing to spread not getting better. Another visit to my primary care Monday afternoon, and I was told to go to the ER as it was going to probably need iv antibiotics.  With all of this, I was also having some other issues with side-effects as well which made everything more complicated.

The ER was quite an experience, and I made sure to have a mask on before I walked in the door. When I got there, they told us it was a 4 1/2 hour wait and the waiting room was packed and very scary with all kinds of germs.  After telling her that I was on cancer medication, the er front desk did tell us that she would try to get us in as soon as possible to triage.  We did get back for triage pretty quickly, and interestingly the triage nurse was a former Adams band parent.  The doctor we saw there said that I'd probably be admitted which I wasn't surprised by at this point.  We got back into an ER room, saw another doctor, got confirmation that I'd be admitted, but told that there were no rooms available, & I was #28 in line for a room.   So, I spent the night on a stretcher with no pillow which wasn't very comfortable, but poor mom had to spend the night in the only chair available - a folding plastic one.  (poor thing - I felt so bad for her)  I have to say that even though the ER was super crazy that night, every person that worked with us was so nice and patient.  It really made what could have been a super stressful situation so much less so.

The next day, after seeing a couple of other doctors, we got into a room in the Women's Center around 11AM.  I was so thankful that I was there in the surgical ward  of the Women's Center rather than in the main hospital among all the crazy germs.  The nurses and all of  the staff that I had were AMAZING! I can not say enough nice things about the care that I received there.

While there, I think I got put on every anti-type of medicine you can imagine: antibiotics, anti-virals, etc.  If it had an anti in front of its name,  I was on it because they were trying to figure out exactly what was going on and battle multiple  things at once -- the possible shingles & the infection itself.  I had previously had two different doctors tell me I had shingles, but the blood culture was negative for shingles.  The oncologist from my cancer group that saw me believes that it really is a rash from Afinitor and that the multiple issues I was having were all side effects from the cancer treatment. She recommended that the dose of Afinitor be reduced as there are several lower dose options, but during this time I was still taking the full dose while in the hospital.  I had a really hard time with that at first, but she calmly stated "this dose put you in the hospital, that is not something that can keep happening."  They also reminded me that it is better to be on a lower dose for longer than having to completely stop the medicine b/c of the side effects.

 She consulted with Dr. Cogburn, my oncologist.   The decision made today was to stop the Afinitor briefly, for a week, to see what happens with the rash.  She also wants me to  go ahead and get the ptscan done quicker than previously planned.  Once we know the results of both of those things, she  will figure out how we proceed.

 I  did not not realize how bad the infection and everything had been making me feel until I got some of those iv antibiotics.  On Wednesday, after 24 hours of them, I was already feeling much, much better.  I was released with multiple medicines to continue to work on the infection, and I'm not sure that I have ever been so happy to get home as I was this afternoon.

Thank you for the prayers and well wishes while I was in the hospital!  I would also appreciate prayers for the upcoming pt scan and wisdom for my oncologist to make the best decisions possible in regards to the cancer medication changes.