Afinitor/Aromasin
Comments
-
Moomala, You are braver and stronger than I am. I don’t know how you can tolerate that severe pain for so long. Mine began after 3 or 4 weeks. I had the pain round the clock and could not sleep more than an hour at a time. I think that caused exhaustion that made it even harder to cope with the pain. Like you, I don’t really want to change treatment prematurely, but I don’t know how much longer I have. If I can have a good QOL, that is important, too. Why is this so hard? I hope you find relief soon. You have had more than you share of challenges.
Nkb, I found your comment about Taxol to be interesting. My circumstances would fit that pattern.
My goal right now is to feel good on Christmas so I can enjoy family time. My poor DH spends way too much time worrying about me and caring for me. I want him relax and have fun on the holiday
Hugs and prayers from, Lynne
0 -
At what point do you tell the MO that you don’t feel good? I’ve been run down/fatigue, decreased appetite and a little breathless the past couple weeks. I know to watch for a fever and lung issues but I’m miserable.
Before that I felt so good especially after taking the AA.
0 -
Leee-I would tell them now. They probably want to check for pneumonitis and other things. Blood sugar can be an issue. Sometimes I feel a bit “yucky” in the morning until after breakfast and coffee - I thought it was probably low blood sugar, but, since it passes in 30 minutes or so I don’t report it. It’s random also.
The shortness of breath and poor appetite probably need looking into.
0 -
Leeee this is exactly how things have gone for me on AA so I hear you. I'm sticking it out but it isn't easy! I asked the pharmacist who mails my Afinitor what her experience is with this drug and she said this "some people do really well on it and some people fall apart". When my oncologist visited me in the hospital I told her this and she nodded her head. At that time I was experiencing daily and numerous bouts of D, and had had the abcessed tooth, a sinus infection, and finally pneumonia in the space of just a few weeks. The further away from that the better I feel and I'm just left with tiredness and achy bones. You are probably seeing your oncologist or NP once a month right? Is it something that you feel you can wait for?
Lynne, I am total baby and google every symptoms and worry about stuff like crazy. My shins have bothered me to the point I've thought my left shin might be broken but it has not been enough to keep me up at night. Last night I got up to go to bed and I felt like a 90 year old woman but I was able to get into bed and sleep all night. My back wakes me up sometimes if I turn the wrong way. My hips, femurs and shins ache almost all of the time but it feels like a pretty low level to me. You are on Aromasin rihgt? Hopefully they took you off that too - I think that is the drug causing the problem.
Iwill admit I was very very tired over Christmas and had to cancel the Christmas Eve dinner we'd planned and then changed the Christmas day plans as well. But I am still also recovering from pneumonia so I'm waiting that out and waiting out the 12 week AA protocol to see if it's working. If I'm stable I'll decide about staying on it an putting up with SE's. Most people here say the SE's do get better. I am not looking forward to the next option Piqray and may decline that drug if my MO asks.
0 -
Yes, my MO says the same thing. some people do really well and other people just can't tolerate the drug. it is true of many other drugs as well- also <50% of the time with ALL of these drugs don't work or don't work for long, so I feel like I am living month to month.
when I told me MO that I had fewer side effects on AA than on I/F- she couldn't believe it. she said like what? No leg cramps, less fatigue, much less neuropathy/paresthesias, less anemia so more exercise tolerance, better white count and ANC, which might not mean anything. Much more hair and very luxurious, much less thirst so not getting up every hour to drink 8 ounces of fluid and then need to pee.
0 -
Hi All,
Just because there can never be a dull moment, my rash has now moved from my forearms to my chest and underarms. Along with this new development, my right breast, ground zero for all this fun has now become swollen. Saw my Oncology Nurse Practitioner today, all labs (tumor markers pending) look just fine. She has reached out to the MO, likely going to do a breast ultrasound. Seriously, I was feeling so great, I knew something was going to pop up!
Any guesses what could be the cause of this swelling?!
Best wishes for the new year to all!
Stacey
0 -
Angie here...checking in. Lost my original post so this will be short. Still doing okay....14 months on Affinitor. Scans end of January; praying for good results! My DH's lung cancer diagnosis has us running back and forth to various doctors....we are both tired!
Moomala-hope your SE's diminish very soon.
Cling, 50's girl, Lee, Stacey, Nkb- thinking of you all and hope everyone can bring in the new year with good results!
0 -
I knew I was missing someone....
Netta-wishing you the best also!
(Hope I didn't leave anyone else out).
0 -
Stacey I am wondering if the rashes could be causing some sort of lymphedema situation in your breast. Do you know how to do lymph clearing? It might help. I'm thinking of you. Never a dull moment with this (insert whichever swear-noun you like)
Angie, so it was a positive dx for lung cancer. I am so sorry Angie. I can't imagine what you two are going through mentally. Reaching through my laptop screen and giving you both a giant but gentle hug.
0 -
I called MO office and for now the focus is to get better sleep for the fatigue.
I’ll have tests and appt in a couple weeks.
i feel it’s RX since it’s just recently and my last scans were really good. But it’s all so uncomfortable.0 -
Welp that was fast - I've been on Afinitor/Aromasin for ten weeks and based on imaging done for the orthopedist yesterday I have progression in my pelvis. MO is moving my CT scans up from Jan 31st to ASAP and then I'm moving on to chemotherapy. I have had zero to very slight response to either Ibrance or Afinitor so AI's clearly are not my bag at this point and I apparently need a machine gun to stop this cancer. I have no idea where I'm going next. I'm instructed to continue to finish the last two weeks I have here of Afinitor/Aromasin, have the scans and decide what's next. It will not be Piqray and that is partly my doing. I think MO would have been totally down with Piqray but she has very very few patients on it at this point and I was a bit insistent that I'm sure AI's are not working and I am totally NOT down with doing another one right now.
0 -
Moomala, I am so sorry to hear about your progression. I do hope that chemo blasts those cancer cells and gets things under control. Let us know when a decision has been made about which chemo you will be on. What is your MO’s reasoning for keeping you on A/A for two more weeks if it is clearly not working? Maybe she thinks that it is effective on some mets and not others??? I know how frustrated you must feel right now. I think you made the right call when you steered your MO away from Piqray and yet another AI. It seems like it is time to pull out the big guns.
Hugs and prayers from, Lynne
0 -
Moomala,
I am so sorry and angry to hear that you have some progression. I am certain that the chemo will push it back into submission. You can always lap back around and try the targeted therapies again. I saw my MO today and she said some people are doing well on the Piqray but made a grimace type face regarding the SE's.
Remember, we are making it through 2020 to 2021!
Best,
Stacey
0 -
Moom- this is crummy news. I think it is good that you are staying on the AA until you figure it out esp if your blood is fine and you feel ok. When Ibrance failed me,my MO said stop it , but , no hurry to make the next choice. My TMs doubles while I was between treatments. It might not have mattered, but, I think It is probably going to do some good to stay on it. I have heard that cancer rebounds off the Ibrance, I don’t know if they is true if AA as well.
Do you have ESR1 mutation? Maybe you should try fulvestrant- a SERD.
Let us know what the next scans show.
0 -
Hey everyone,
Just checking back in after returning from the hospital where I had spine surgery on s1/s2 to remove the met pressing on the nerve roots. Things went so bad ... after successful 1st surgery I developed an haematom within the spinal channel and lost most of the sensitivity on my butt and between my legs. They had to do a 2nd surgery to remove the bugger. I could not even pee for 3 days and had be be catheterized. Now I barely manage with a lot of stomach press, but it is far away from good. Additionally, it is a weird sensation, like some dead animal being strapped between my legs ... not really painful but annoying ... does not help with my sleeping issues either.
Wrt to the met removal surgery itself, my general recovery is fine ... but I still need a wheeled walker to get up from the bed and to be a but more sure about my walking abilities (exhaustion). But I have to admit that I was also not really aware of what recovery this surgery would require ... they said 3-5 days hospital (make it 9 for me due to the complications) ... 14 days until wound heals (keep fingers crossed) ... but I was not told about 6-8 weeks recovery period in total and how bad it would be after the 1st week. Oh well, but do we have choices?
Wrt A/A, it is only the first A for me at the moment to allow wound healing. I will start the Everolimus part then in 1 week ... hoping for tolerable side effects...
Best regards,
Netta
0 -
I progressed on Ibrance/Faslodex but responded REALLY well to Gemzar/Carboplatin IV chemo.
I’ll find out in a few weeks if the AA is working.0 -
Nettager- you have really been through a lot. I am glad that you are on the healing end of the surgery. Be sure to use the mouth wash prophylactically the the recommended 2 months. Don’t wait for mouth sores.
I had various weird side effects the first month or two , but, overall far fewer than with Ibrance.
I do hope the AA is working for you Leee. I have been taking it 10 months now- so my be nearing the end of its effectiveness. I quake at the thought of changing.
On the bummer side I have my first ever UTI- been fun to add to recent severe cold ( from grand baby) and infected root canal.
I have high hopes for the new year.
0 -
Nkb- what dose are you on?
0 -
Leee- 10 mg.
0 -
@Nkb: thanks for your supportive words.
Currently, I am still facing the issue of anemia after the surgery, with an HB value of only 8.7. I get out of breath very quickly, my heart is racing and I start sweating after only a few minutes of action (like taking a shower) before starting to see stars... However, I am supposed to start with the Everolimus on Sunday, which give me a bit of a scare as I read that it will rather cause anemia as side effect than neutropenia. Is there any RBC orHB limit as to when to pause Everolimus? What is your experience on anemia caused by Everolimus? How likely, bad, ... is it?
BTW, my MO told me (already before my surgery) to use as starting regimen 5 mg for 1 week, then 7.5 mg for 1 week, then full dose. Does this really help to reduce side effects?
And one more question: my pharmacy mixed a mouthwash according to a prescription from my MO. However, they only gave it a shelf-life of 1 week (I assume because it does not contain a conservant), which is ridiculously short as I see my MO only every 4 weeks. Is it safe to use it longer or should I request a recipe with a conservant? How do these mouthwashs (w or w/t conservant) taste, anyway? I already feel sick and choke a lot of times (could be the opioids, cancer itself, nobody knows) and am scared to vomit on bad taste (liquids are worst on me).
Looking for your experience...
Netta
0 -
Nettager- my anemia actually got better on AA compared to Ibrance. At the MBC diagnosis my HGB was 7.0 and I was short of breath and got a transfusion. ( anemia due to bone marrow full of cancer) after the transfusion I was ~9. It went down to about 8 and then started to rise on the Ibrance and settled on 9.5. With AA it is 11.5. I got low neutrophils the first cycle and had to stop one week and then resumed and the ANC has been 1-1.5 since then. I have always been on 10 mg although the second opinion specialist at UCSF said I could start low and go up or start high and go down if needed. She preferred to start at 10 mg. About half of people need to decrease. I am not sure that really matters-
My mouthwash was Dexamethasone oral solution USP 0.5 mg per 5 mL expires in 2022 - tastes neutral. Although it’s great to stop it- just a hassle after awhile - away from food etc. I found that using it the moment I woke up and then got ready etc and by the time I got to the breakfast about an hour had gone by. I got no mouth sores. Occasional felt they might begin and added a few baking soda swishes those days.
0 -
Nettager, My anemia has not gotten any worse since I started this treatment. My hemoglobin stayed between 7 and 8 while I was on Taxol. Each time it dropped below 7 I had a transfusion. Hemoglobin has been between 9 and 9.5 on Afinitor, so pretty stable. Of course, I am still anemic, but I don’t suffer from that awful lack of energy and shortness of breath on exertion. I have the same mouthwash that Nkb has, and it doesn’t have a short shelf life. Is your mouthwash something different?
My MO called me this morning with the results of my tumor markers. They jumped more than 1000 points this month, and my liver enzymes are up again, too. It is time for scans. I hope that the numbers are just a fluke, but we’ll see. I am feeling really good, and I was surprised by the results. i am not ready to change treatments so soon. Grrrrr.
It was 15 degrees when I got up this morning. I have decided that I no longer like winter. Why do I live in NH?
Hugs and prayers from, Lynne
0 -
50sGirl- what a bummer about your TMS- I hope they are rising for some other reason. It is daunting to go through a new treatment decision etc I think the psychological stress of cancer is starting to wear on me I do feel like more will be known about adaptive therapy and revisiting previous treatments etc interesting article in wall Street Journal about that today
Mine went up with a really bad infection, but, then down a little a month later. I think I may be at the end of the time I am going to get on AA- but, I hope not- it is easy. I am thinking if it is only a mild progression trying to stay on the treatment longer or be off for awhile and restart it.
My best purchase last winter was a gas insert for my fireplace. So cosy and cheerful. Life changing. Don’t wait if you can get one.
0 -
My scans got moved up Lynne. I was at the orthopedic oncologist for a follow-up last week, and she did some x-rays there that showed what she thought looks like progression so it appears as though Afinitor has done nothing for me. My MO wants to do the scans before deciding on medicine changes so I'm having them all next week. I will not be sad to leave Afinitor. Many of the initial issues have resolved which is great but new things keep popping up. This last two weeks I've had a little swelling in my hands and feet and I still have a little shortness of breath. It's minor and I feel a little sheepish for complaining. I'm going into week 12 of Afinitor so it'll be the perfect time to stop. MO is sending me the next box, but I can't see a reason for opening it if these scans show progression. The way it overlaps though, she is keeping me on Afinitor for another week at least after the scans because she has no openings in her schedule to give me scan results. Ugh.
I'll be shocked if it's working. My TMs have been dropping a little but nothing dramatic like with Ibrance. For me, after Ibrance and Afinitor failure I am not willing to go to Piqray. I have not had enough response on either of these first two AI's to warrant going on another one. MO would like me to do Piqray but I'm a no on this. I need a sledgehammer to get things under control at this point. I will be going over to Xeloda or to IV chemo from here. I have a second opinion appointment at Dana Farber Boston coming up at the end of the month and I'm really excited to see what kind of options are available to me. Not too excited to move to chemo, however again I feel I need something bigger. It is hard to be someone for whom AI's are giving just zero to partial response. In support group there are women on Ibrance for quite a few years and getting great response. I'm trying to be positive that since I did get a partial response from Ibrance that if I can get this all knocked back to stable with chemo then I might be able to take Ibrance again someday. That was such an easy drug for me.
We are having a WIERD winter over here in western NY. There is hardly any snow on the ground and we're expecting temps in the fifties this next several days. Very strange to be this far into January and it's hardly winter at all at this point.
0 -
NettaGER-
I had the same mouth rinse and our pharmacy gives it a 1 month expiration. It’s also to be stored in the refrigerator.
0 -
moomala- I do still hope that afinitor is working for you- just to not burn through treatments too fast. If it is, I wonder if lowering the dose could make you feel better? Maybe changing to faslodex along with it? Most of these treatments work on 20-50% of people at most, so it is a crapshoot to move on.
I heard today that NY was 65’ today! Very weird weather.
Let us know what the scans and second opinion says!
0 -
Will do NKB - I feel I can do these SE's at the current dosage but only if the drug is working. Maybe I will get a surprise this week and find out its working after all but my MO messaged me the other night that my P13K mutation was positive which could be the reason that Ibrance and Afinitor are only giving me partial response. I was confused. I need to do some more reading on this but I won't have time for a few days. It's scan week and work is super busy this week too and birthday month for most of my family!
0 -
moomala,
I have the P13K mutation as well. I wasn't aware that affected Ibrance and Afinitor?! I also have a real doozey, the FGFR2 amplification which sounds like NO FUN! Thus far, 8 months in Afinitor has kept me stable, no big TM drops but no big increases either. I also feel reasonably well on it. I thought I had heard somewhere that Verzenio has a different mechanism of action and may be worth trying? I agree with you on the Piqray, that drug seems really scary!
Hoping you have good scans!
Sounds like lots of birthday cake in your future, always a good thing!
Best,
Stacey
0 -
I don't know if I have the PIK3 mutation, the specialist at UCSF said she didn't care if I did or didn't- she would still want me to take Afinitor. I decided to wait til later to test for it, when it might matter. I do agree- Piqray sounds scary.
I have repeat TMs in a few days- hope they are lower and an MO appt early February, if TMs are not down again or have risen she will want another PET- I mostly try to avoid them. Not ready to change drugs- now that my UTI and subsequent yeast infection are gone, I feel pretty good.
0 -
NKB,
Here's to lower or stable TM's! I share your feeling on not wanting a drug change. Even with my really terrible rash, I am doing really well on this drug in terms of QOL. It would be nice to get a good amount of time on it. Haven't even talked about what would be next with my MO.
Glad to hear your UTI and the always fun yeast infection have cleared. Let's add a good TM number to the PRO column.
Best
Stacey
0
