Afinitor/Aromasin
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Moomala,
Giving you a shout out, how are you feeling today?
Hoping for a little to a lot better!!! Let us know!
Stacey
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Moomala,
On the balance this is good news. I am so hopeful that getting off the Afinitor will see your gut issues resolve and you will feel better in short order. If the Piqray isn’t doable, you will try something else!
Having a PET on Monday. I guess it will be the diagnostic test tie-breaker.
Hope you are having nice spring weather and feel well enough this weekend to get out and enjoy it.
Oh and yay, you dodged the Covid!
Be well
Stacey
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Hi Stacey! Yes dodging the Covid was a great feeling! I do have to go out for labs and for a thoracic MRI within the next few weeks which makes me nervous.
I have my appt with MO yesterday after talking with her by phone Monday. I'm starting Fulvestrant next week and then probably Piqray in June. She'd given me some indication on Monday that she'd start low on the piqray but she said she would rather start highest and drop if we need to ughhhhhhhhh. If it's not doable we will move along to something else. I do not think she has a lot of patients on Piqray. I asked her for her rationale on changing my drug Afinitor because of D, no appetite and weight loss, rash, etc to Piqray which has the same SE profile. Of course she said her rationale was that I might not have the same SE on Piqray. Sounds simple but that is true. Everyone is different. I know that I was feeling pretty good the first 8-10 weeks of Afinitor and then kablooey SE's starting showing up. My pharmacist told me the on Afinitor many people go on a SE roller coaster and just fall apart. I guess that's what happened to me. As of earlier this week I had D, extreme weight loss, loss of appetite, rash on my face and then the rash spread up to my eyelid, splitting fingernails. A lot of that i can live with but the loss of appetite and weight loss were bad. I am 5'3 and weighed 108 yesterday. My normal is 130 so I have some work to do putting this weight back on. I'm hoping to hold off on Piqray long enough to gain a few pounds.
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moomala
No weight loss but I have started with the D....ugh! but it came on exactly with the magnesium supplements-common side effect. Cutting the magnesium dose in half until next week. I am going ask to get an infusion instead of the tablets at my next appointment. Hopefully I can kick the D away since this is my first line that is working!
Good luck with the Piqray. And get healthier while you wait
Dee
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Moomala
Hoping that when you begin to feel better you will go on a giant pig out! I hear you on the rash issue, I had the worst rash for such a long time, then one day it just stopped.
You have the right attitude about the Piqray, you try it, if it’s tolerable, great! If not, next. Hoping the MRI and bloodwork is all status quo!
I have no idea what’s going on with me. Scans say ok, TM’s rising, except for the 15.3 which came back down this month. PET on Monday. Wish I could have just started with it!
Have a great weekend. Be careful as things start to open up again.
Best
Stacey
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I’ve been on Afinitor 10 mg and Aromasin since Aug 2019. I’ve done well on it but have noticed my tumor markers starting to rise slightly over the last few months after shrinkage of my liver tumors on my Feb scans. They are still normal range but have been slowly rising. I’m hoping I don’t have progression. Hoping for good scan results next week
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Met with Onc the past Tuesday, my CT and bone scans last week are mixed results. The current peritoneal carcinomatosis is stable, but there is a 1cm mass on liver not shown on December CT, so a MRI is scheduled tomorrow. She thought because the question on liver, A/A are not working. She wanted to put me on Doxil or Paxil, or do a trial. I was disqualified by prior trial because Hep B history 40 years ago, I don’t think going to a trial is possible. I have few SEs under A/A ( loss of appetite and weight, diarrhea. Etc. ) but basically Afinitor has been kind to me, and ascites have been reduced to minimum. I don’t want to change to chemo, while A/A are still working well on my peritoneal area. So, I am ready to seek a second opinion from IR liver specialist, if the mass is confirmed as progression to liver. I think there are a lot local liver treatment possible.
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Hi Moomala and all,
PET scan shows some progression in my pelvic bones and some resolution in other bones. My MO wants to do a deep dive into the last bone scan disk and see if it is possible to radiate rather than change meds. It seem that everything else is stable, smaller, or gone. As it did last year, my thyroid is showing some uptake. They think it's a goiter nodule, not cancer. We are putting it aside for now, may ultrasound at a later time.
I am feeling sad and out of steam on this cancer thing. I can't seem to get past a year on a treatment. At this pace, 2 years in, I am going to run out of options in short order.
Stacey
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Stacey- I’m sorry you are feeling out of steam. Hoping you can radiate. Look into SBRT
BTW this is the first time I have had more than 3 months in a treatment. I’m hoping Afinitor will last me a long time!
Cling- please try local therapy to the liver and check out that board here! I had very successful y-90 and bland embolization. Now I’m looking into local treatment for a lung met- SBRT or cryoablation.
I learned here to try a "whack a mole" plan. Put out the poison (systemic treatment medicine for the whole body) and shoot the little buggers that pop up(local treatment like y- 90 or SBRT radiation.)
Hope you all get some novel local treatment options.
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I hear you Stacey. I'm a bit over a year in and going into my third treatment line. It is really discouraging to understand the progression free survival rate on most of these drugs is a year or less. Knowing that some people go so much further than the average pfs is hopeful, but then to get dashed like this a couple of times is upsetting and can feel hopeless instead. You have quite a few treatment options in front of you but it's hard to change. My MO said she would not change my treatment over my most recent scan. But Afinitor was sucking life out of me.
For me I'm feeling better off Afinitor and frankly did not realize how bad I was feeling. My appetite is back, I can taste food again, my mouth is not dry, salivary glands are working and I feel a bit more energy, I don't have the nausea and gagging episodes every afternoon anymore, the rash on my face is resolving, my blood sugar dropped down to normal.
I know the next treatment may be equally unkind to me. I am hoping to be one of the people who don't have too many side effects. But I will try it. I start Faslodex on Friday. Little anxious about that too, but I will try it.
Give things a few days and you'll get your steam back. We're all just chugging along.
Big hug!
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moomala so glad you are feeling better.
Question to all. Has anyone had their voice start to sound gravelly? I don’t have many SE other than low WBC which we watch and I give myself booster shots, I had to get a magnesium infusion because the pills were giving me Diarrhea . I noticed my nose runs more, I drink lots of water and suck on cough drops but I am sad that my voice sounds so old. It’s a silly thing to fret about all things considered. Anyone else have their voice change on Afinitor?
Dee
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Alabama- I had a runny nose, and thirst , no diarrhea or even low WBC. Dry skin though.
do you think you might have allergies?0 -
Moomala,
How are you feeling? Is the eating going well?
bestStace
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Still off Afinitor and doing much better. D has resolved. Eating is better although I am never really hungry. I eat when I am supposed to. I added a daily Ensure so I could start putting some weight back on. It will take some time.
I see MO next week for the Piqray conversation. I think I am going to refuse it because I really am concerned about my weight. Piqray has the same SE profile as Afinitor, with some extras. She will not be happy with me but I get to choose! I can always try Piqray later when I have put some weight back on my bones.
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moom- what are your other options ?
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Moomala,
Having the diarrhea stop is a step in the right direction. The weight gain will take time, but just stopping the weight loss is also a good start.
Your MO will have to put together another plan of action if you don’t feel comfortable with the Piqray or assure you that she has a plan to keep your weight stable and the other SE’s managed. Did you have your MRI?
I am a still waiting for the radiologist to review my November bone scan, May bone scan and May PET scan side my side and make a definitive call on what’s going on. I do have an appointment with an RO next Friday. I am really uncomfortable about the amount of time getting a plan of action in place.
Have a lovely weekend. Avoid the news if possible!
Best
Stace
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Hi Stacey and NKB!
I think one of the options is to keep me on exemestane and fulvestrant until I put some weight back on and then add Piqray after I've demonstrated weight gain. I'd feel comfortable with this. You just have to try it and if it's awful you stop. I think I could also go to Xeloda but me MO seems hesitant about this.
I've been off Afinitor just about three weeks. It took awhile to wash through but I am doing a lot better. I am not necessarily hungry but I can eat a meal which is great. I had a high fever for a few days that nobody can figure out. Bloodwork didn't really show anything.
Gaining weight is definitely hard and frustrating. Last week's fever set me back again but I'm trying to add extra calories where I can. Ensure is great - just drink it down.
NKB how are you doing on Xeloda?
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moomala- once I started the weight gain (weight loss was from my hemolytic anemia, not from Afinitor- it didn’t stop! )Now I must cut back. DS is cooking and baking up a storm- also eating a lot.
I’m doing pretty well on Xeloda. 14 on 7 Off- I had to decrease the dose due to HF pain. Now on 1000 twice per day. My TMs went down 80% in 5 weeks- no other treatment has done this- mostly 50-60%. I don’t know the long term plan. I don’t think I have the PIK3 mutation, but, am afraid of piqray side effects- hope you do well with it! Was afraid if Afinitor also and did fine with that- so it’s all a crapshoot I think
I’m glad the diarrhea is better. How miserable that sounded.
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Hi Moomala,
Hope you are continuing to feel better and although you're not ravenous, you are able to do some serious eating and get the weight moving in an upward direction.
I am more or less in the same boat regarding the A/A protocol. I have progression in my pelvis. My doctor called me last night and suggested the move to Piqray. She gave me the "same people do ok on it" song and dance. I will start it but have decided to radiate the pelvis, and push the Piqray out to early August. I am taking my daughter to grad school end of July/early August and I just don't want to feel crappy and look noticeably sick. She is going out of state and I am afraid she won't go if I am not doing well.
I got a year on the A/A protocol. I hope that I do reasonably well on the Piqray. We are also going to begin to look into clinical trials focused on targeted therapies.
Feeling a little defeated but happy to have a plan.
Let me know how you are getting on!
Best,
Stacey
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Hi Stacey! Because of my weight loss, I am doing faslodex alone for a little while. If I gain some weight back, I too will try Piqray but it's going to be months before that happens. i had the first set of of injections yesterday.
I'm really sorry you have to make the Piqray move too. I sent an email to my MO at Dana Farber/Boston and she said some of her patients do well on Piqray and others really struggle and the bottom line is if you hate it, stop taking it and you'll feel better in a few days. Having gone through really difficult SEs on A/A I have a healthy fear of something with SE's the possible likes of Piqray. I feel much better now that I'm off A/A although in a depressed funk with all the changes and uncertainty in my treatment and in the world. It feels a bit like it's crashing in on me.
I'm eating three small squares and a couple of snacks but the weight is not yet moving. I'm going to have to step it up a bit. Just having a hard time of things right now - orthopedic appts coming up this week with the possibility of a surgery or two which makes me feel full of dread, plus none of my clothing fits me, I can't seem to get enough food in me to gain, I'm feeling tired and a friend is in hospice in her final days. Sometimes it just feels like it's too much doesn't it?
Are you going to stop A/A while you go through rads? I hope so. It would be nice for you to have a few months of feeling great. I didn't realize how gross I was feeling until stopping the Afinitor, even with the dose reduction. Whoa I feel way better except for the appetite which may have more to do with depression at this point.
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Hi Moomala,
I am hopeful that you will start to see some of the weight come back. In the meantime, can you get a couple of things that fit you so feel a little better? I bought some things off the JCrew factory site recently, very cheap! $5.00 t-shirts, $12.00 jeans, and $7.00 shorts.
I know the crashing feeling. It does feel like too much. I am just trying to keep putting one foot in front of the other until my daughter leaves for school. The thought of that Piqray drug really seems like I am moving into a whole new lifestyle of side effects vs quality of life. My MO said that Piqray is now the #2 line of treatment after Ibrance/Faslodex. 'Standard of Care" speech. Some people do ok. Blah, blah...
Plan is to stay on A/A until mid-July TM blood draw. This will let us see if the radiation fixed the problem and I can get a little more time out of this drug. If markers are up, I will start Faslodex then and Piqray when I get back from dropping my daughter off at school. This will give me a couple of weeks off Afinitor, I have to say I wonder how I will feel without taking this drug. Do you really notice a big difference?! Aside from the lack of appetite, do you feel as good as pre-stage 4?
Things have finally calmed down here in LA. Protests continue but they are calm. Heat and wind though, so fire season has started 2 months early.
Step up the eating if you can manage! If the weight loss has stabilized, you should be able to start to move in the other direction. Baby steps! It won't happen over night.
Take care,
Stacey
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Stacy-
I am glad that you a still doing well and hope that you can stay on afinitor for longer. I had terrible body aches for 4 days when I got of of it- my MO had never heard of that . Maybe it was stopping the exemestane. For me, it was still my easiest treatment. Back to hair loss and sore feet and hands.
Where will your daughter go to school? Mine will start school for her MFA and since the program is small the classes will be in person! Hope it is safe- she is in LA.
Enjoying the weather here (except that super hot spell last week.
Hi Moom!
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Hi ladies,
After 7 rounds of Kisqali/Fulvestrant, it looks like I might have progression and will be on my way to Afinitor. I went all the way into the normal range with TM's but my tumor markers are rising again. I have the FGFR1 amplification (lucky me) and have scans coming up to verify progression. I'm not thrilled, but I'm also not surprised as I know the FGFR makes me resistant to Kisqali, so I'm glad for what I got out of it. I was hoping for 12, expected 6, got 7, so a little win. I'm guessing I'll stay on Fulvestrant as well, but not sure yet. I also don't know if I should try a clinical trial first or wait until after Afinitor? My MO isn't the most receptive to new ideas, I need to find another one I click with a little better, but now doesn't seem like the time to go doctor shopping. Maybe a second opinion at MD Anderson would be a better move. From what I have read and researched (mostly from the amazing researchers on this board) Afinitor is the logical next step, so I'm not in a huge hurry.
I've been feeling so good on Kisqali, I've been able to push the cancer out of my mind, but with Afinitor, I'm afraid the side effects will keep it front and center. That's almost as bad as the SE's themselves. Maybe I'll get lucky again, who knows. Anyway, I'm expecting (hoping) for good results on Afinitor - at least 2 years, hopefully 3. Am I being too optimistic? I really hope not.
Sorry for the stream of consciousness verbal vomit post, but I'm trying to process this new info. Thanks for listening.
Lauren
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LaureninPHX- sorry for your progression!
Side effects can really vary and most of these drugs only work on about 40-50% of people- it's a crapshoot often. After the first few months of mostly fatigue I felt great on afinitor and my hair got really thick, leg cramps and neuropathy got better- I got 10 months. other people have had a really hard time on this drug. Definitely do the mouth wash the first two months. The fear of taking the first few pills is overwhelming!
I did get a second. opinion who agreed with afinitor- although my MO did say, you will be cycling through them all- which has turned out to be true.
Good Luck!
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Thanks Nkb. I see you're on Xeloda now - I hope that is working great for you and for a long time to come.
I read a Facebook post in one of my groups (can't find it now) by a woman with FGFR who failed Kisqali in 3 months, but stayed on Afinitor for 3.5 years. I'm holding on to that and hoping I get at least 2 out of it. I have scans on Thursday and hopefully will get the results before the weekend.
The scanxiety is the worst - I picked a really bad week to give up chocolate.
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LaureninPHX- I think chocolate is a health food!
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Hi NKB!
So strange you mention the joint issue. Something is attacking the joints in my left hand/fingers. Seriously, I struggle to bend and straighten them. No pain but very weird.
Relatively speaking I am having an easy time with A/A. I am hoping that the radiation works and I can milk it for a little while longer. Piqray really scares me, but if its a nightmare, I will stop it.
My daughter is off to U of Wisconsin, Madison. She is doing an MS in Global Supply Chain Mgmt, it's part of their MBA program. They say classes will start in August, so off she goes.
LA is dreadful hot and windy, waiting for the fires to start.
I am happy to hear you are managing on Xeloda, I hope you continue to have good results with it for a long, long time!
I am in West LA, not too far from UCLA. If either of your children ever need something, I am happy to be a go to. I will DM my info. Also, when you come to visit them, we can have lunch in the garden, 6" away from each other.
Take care and thanks for dropping a note!
Stacey
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It is indeed, Nkb. I just ordered $40 worth of stuff I don’t need just so I could get a big ass bag of kisses delivered so I wouldn’t have to leave the house haha.
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Stacy- sounds good. Hope the radiation works well. I am very familiar with the area around UCLA now. Global supply chain management sounds quite vital to learn about!
Here’s to garden visits and tea some day!!
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Hi all
I am having SBRT to a small lung lesion. Doing great on Afinitor/Faslodex/sandostatin regarding overall SE (much better than Xeloda or doxil)
Soooo I am advised to stop the Afinitor for the week of the 4 radiation treatments due to Afinitor possible lung toxicity. I have had a few bouts of shortness of breath but very minor.
Stopping the meds is causing me some anxiety. This is the first treatment that has given me any success - liver mets are shrinking from both Y-90 and new meds
Anyone else stop A for a short time and go back on? What was your experience? I know we are all different, but I learn so much here from others stories.
Thanks,
Dee
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