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.  

Thursday, January 25, 2018

Shingles, shingles, go away....& other updates

10 weeks.........2 1/2 months.........That is how long I've had shingles, and honestly, I'm about to go run around screaming like a crazy person...except due to the shingles that would make me hurt too.   When the shingles, started they were an annoyance, but thankfully not too painful.  Just when I think they are starting to go away, I will get more sores, and unfortunately, the pain is worse with each round.  Since I'm immunocompromised, they aren't staying on one side of the body or in one dermatome.  I have shingles from neck to thighs, and it is really wearing on me.

 My oncologist said that the Afinitor, cancer drug, may have just activated them, and I may keep them while on these meds. We've tried antivirals a few times already, but they've now decided to keep me on them.   It's a little discouraging to get a 30 day dose with 11 refills.....really! (Long, loud scream in a pillow) When I hope that the Afinitor will work & work for a long time that is a little frustrating. We had already tried one medicine for pain, but thankfully we've added another yesterday that hopefully will start to give some relief soon.  I would really appreciate prayers for pain relief & that the shingles would vanish!

I try very hard to stay positive, but this cancer med, in general, is being pretty annoying with other side effects as well.     Initially, I was told if I did 8 weeks of a steroid mouthwash that I wouldn't have to worry about mouth sores anymore.  So, while it was annoying, I had hope that it would be temporary.  Unfortunately, 3 days after my 8 weeks ended, I ended up back with mouth sores that are pretty brutal.  I'm back on the mouthwash, which apparently I'll be staying on, but so far not any relief from them.  The sores mean that I have to be super careful with what I eat and any acidity or spice makes them worse.   Today, even the little bit of pepper on something was causing pain; I'm back to eating as soft and bland as possible.

The meds also come with taste changes for some foods and nausea, but at least the bonus for that has been weight loss!  There is a bright side to this medicine after all!   Since this med does target a mutation that we know my tumor has, I still have to hope that I will be on it for a long time.  I have had to cancel multiple things though b/c of both the side effects and being told by doctors that I need to eliminate any additional stress since it plays a role in the shingles. I was supposed to play in a couple of groups, and the mouth sores have made that impossible right now.  I also had to cancel some judging for solo & ensemble as the shingles and mouth sores just make that not possible for the length of time required.   Anyone who knows me knows that saying no or cancelling is not my strong suit or something I normally do, but I know that it will be better in the long run though.

My tumor markers came down over the first month and a half,  and stayed basically the same this month (up just one point).  We will be doing a petscan before my oncologist appointment next month; so, hopefully we will get a better idea of what is going on with everything. A date for that scan has not been set yet, but I see my oncologist on the 20th.

Sorry for the vent, but if you see me look like I'm in pain, now you know why.  I would greatly appreciate prayers for good results with the petscan next month along with the shingles relief.  Hope everyone is staying well and having a good week!

Friday, December 15, 2017

Original-ish "Living" List completed

When I initially created my "living" list, I kept adding things to it until I realized...hey, I better indicate what is new or old so that I actually can complete the list at some point.  The more you travel....the more cool places you discover you want to go to.  So, near the end of 2015, I put a cut-off  & indicated which places/things were newer to ensure that I knew when the original-ish list was done.  The last place I needed to get to was New Orleans. I'd been there before twice for very quick trips but never saw anything beyond the French Quarter and the inside of the Superdome. With my trip this week back to New Orleans, I have crossed the final thing off of that original-ish list which is below. (Please note that things were added randomly as I thought of them originally; so, they are not in  order of importance to me or completion.)

1.     New York/ Broadway Trip
2.     Clearwater Marine Aquarium to see Winter
3.     Alaska
4.     Key West
5.     England
6.     Ireland
7.     Greek Isles
8.     Bok Tower
9.     Tampa History Museum
10. Dali Museum
11. Amelia Island
12. See friends that I haven’t seen regularly/lately
13. PEI/ east coast of Canada
14. Las Vegas for Cirque shows
15. Bermuda
16. Grand Cayman
17. Belize
18. Maine/ East Coast of US
19. Hawaii to see other islands
20. Scotland
21. Morocco
22. St. Augustine
23. Gulf Beaches - Panama City/Destin,etc.
24. Discovery Cove or swim with dolphins elsewhere
25. Rainbow River in Dunnellon
26. Kennedy Space Center
27. Last few states – Vermont/New Hampshire
28. Last few states west – Wisconsin/North Dakota/Nebraska
29. Seattle
30. Aruba
31. Last few states - Delaware
32. Paris
33. Italy
34. Australia/ New Zealand
35. Spain
36. Niagara Falls
37. Zion National Park
38. New Orleans
39. Honduras
40. touch feet to Africa continent
41. Peru – Machu Picchu
42. San Antonio – back again as an adult
43. See Carrie Underwood in concert
44. See Reba McEntire in concert
45. Chicago in a time other than winter
        46.  Chihuly Museum St Pete
        47.  Amsterdam – Ann Frank’s House
        48. Harry potter world at Universal
        49.  Panama Canal    
        50. Iceland / Northern Lights
        51. Charleston, SC
        52.  St Thomas, VI
        53.  Puerto Rico
        54.  Canary Islands
        55. Go to CMA Fest
        56.  St. Maarten

The sad thing is that by now some of the ones like "seeing friends that haven't seen regularly /lately" probably need to be put back on the list again, lol.  My add-on list is now really 2 lists of various things to do/places to go outside of Florida  and things to do within Florida. Hopefully, I will have the "problem" of continuing to add things to my lists for a long time.

In other news, my liver enzymes have tripled on the new medication; so, we will be doing bloodwork next Wednesday to have the information for my appointment on Friday.  If they have risen again, we may have to lower the dose of the Afinitor.  There are 3 lower dosing options that would be a possibility.  Of course, I don't want my liver to have difficulty, but I definitely want to stay on these drugs in some form b/c of some recent testing that was done.  A sample of my tumor was sent to Foundation One which tests the tumor for genetic alterations that could possibly connect to targeted therapies. (Not sure if I'm using exact language, but this is basically how I understand it)  Of the 7 alterations that my tumor had, only one has any clinical trials or FDA approved drug therapies.  The one mutation  is mTOR & the Afinitor that I am on is the only mTOR inhibitor approved for use in breast cancer treatment.  So, in theory, this drug should work well for me.  I want to try to get as long as possible on it.   The benefit to knowing this information even for the other alterations is that if a future drug is in the pipeline we would have more confidence that it would work for me if it was connected to one of those alterations.

Tumor markers are only a guide not a definite indicator of what is occurring, but after only 8 days on this medicine, my tumor markers had reduced by a few points.   Hoping that we will see even more reduction next week.  If you would send good thoughts and prayers for this medicine to work and for the tumor markers and liver enzymes to come down substantially, I would appreciate it.  Meanwhile I'll just be over here researching the next thing/place to add to my living list so that I don't worry about what is going on with the blood tests, lol.