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!
Wednesday, February 28, 2018
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 years....so 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.
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.
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