Afinitor/Aromasin
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SP I bet that rinse could be the culprit. Steroids do such weird things to the body. Not that the rest of our meds don't.
I get my TMs drawn tomorrow. Trying not to think about it.
Artist I hope you are getting some relief. LALady jealous of your pretty toes
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Thanks ladies, i am happy to report I am getting some relief. I think the back pain was actually from all the landscaping we did Sunday. Woke up Monday morning with back spasms and feeling constipated. Been guzzling water, eating oatmeal and bananas. Took the day of and am laying on a heated rice bag and watching movies and feel much better!
Shetland, I agree with lalady too. As soon as I pick them up I'm gulping one down.
Girl, good luck with the TM's, always a stressful day....
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SP -taste changes are not from faslodex, the culprit is Afinitor. (FYI I did 18 rounds of Ibrance + fas) It can makes some things taste metallic. What items taste off for you? FYI Afinitor can cause weight loss, which I seem to have a little of. All tight jeans fit loose now, so had to buy smaller ones. Now back to what I weighed before cancerland. My hair is still ravaged by Ibrance, so although its growing, I wear my halo to work, etc. The letrozale is giving me extra wet nights, so hormonal! Back to the office today ladies.:)
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Lalady I didn't know that about afinitor and weight loss. I'm not only back to pre chemo weight but pre-baby weight. I started eating coconut oil balls just to keep the weight on
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Artist, not bananas if you are constipated! Lalady, most things taste a bit too bitter. My usual vice, olive oil potato chips, tastes yucky. Sweet things taste best, but even chocolate (oh, I guess I have two vices) is a bit off. Girlwithacurl, I have to admit I was a bit snappish last night anticipating today, and I slept very little. I hope you are doing ok.
SO...I did not mention the taste thing to my onc today because my TMs were up again, and she is switching me to Xeloda. Too bad because I was tolerating Faslodex and Afinitor so well! It seems kind of unreal that I am at this point. My onc thinks the cancer is not functionally hormone-receptor positive. One good thing is that she described it as slow. As a dancer I am most afraid of hand-foot syndrome, but she says we can adjust the dose or schedule if necessary.
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SP - so sad you have to move to Madame X. Is there any alternative for you? Did you have a biopsy? I am worried about you.
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SP so sorry about your TMs. I didn't sleep last night either. All I know so far is that I have high cholesterol which I have never had before. But at least I get to see you on the X boards! I haven't had any hfs, so you might be just fine. And no more awful glumps. But still any movement in the wrong direction is so hard to take. I hope you get a better night of sleep tonight
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Shetland, I am so sorry to hear about your tumor markers. I hope X doesn't impact your dancing. To my surprise, it didn't impact my running even though my hfs was pretty bad.
I have labs on Thursday. I have always done labs first thing in the morning, before Ihave eaten anything. My upcoming appointment is at the end of the day. Not sure if timing can impact any of the labs?
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so tommorrow i start rads, the affinitor failed after only 4 months
Also been advised by my onco,of 8 years that i should change docs to somewhere closer to my home. Since i a, set with a rad onco at a new local branch of sloan kettering, i have asked for a referral to an onco at sloan, waiting for call on that now. Was advised by old onco to plan on starting taxal when done with the rads
Can you say i am a mess?
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Proudtospin - I am so sorry to read this. Where are your rads planned? What bones are affected - was progresssion via markers or scans? I am very worried for you, me and others. It seems like Afinitor has been over hyped (likely by big pharma) and does not give many ladies a long run. Feels like a "holding drug" until we get worse and then... on to Xeloda or something similar. Taxol can be rough, I used cold caps to keep my hair on that IV med. Is there any other advice from new onc at Sloan? We are here for you. (())
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well my rads are to be at a branch of mem sloan kettering, just spoke to my rad onco and he will be getting me an appt with new onco
I have yet to met her as yet so do not know her thoughts
So far msk seems to not consider my mets to be as serious as my old onco, mets are in the thorasic area, that is all i know
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Good point lalady, I would love to hear from someone, anyone who has done well with Afinitor. I haven't seen much yet and it concerns me to just pass another 3 months progressing to get to another TX.
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When was your last scan, Artist?
I think Afinitor is worth a try when you compare it to chemo. In other words to delay moving to chemo if one can safely do so. The Afinitor web site says that in clinical trials A/A more than doubled progression-free survival compared to exemestane alone (median 7.8 vs. 3.2 months). It says more than 50% of patients were stable or had tumor shrinkage/disappearance, at 24 weeks. Obviously we hope to be the patients who not only respond, but get even longer than the median. Wish we had a way to know for whom it will work.
https://www.us.afinitor.com/metastatic-breast-canc...
Lalady, I am ok. My liver function is good and my liver enzymes are in normal range. I asked my onc about Gemzar because it doesn't cause HFS, but my she said Xeloda had a better chance of working for me. One reason is that since you take it daily, you will have lots of chances to hit the cancer cells at the right time in their cycle. With this slowish cancer, IV chemo might not hit it at the right time. I think my onc believes it is safer to switch me now than to wait two more months. We will do some kind of biopsy, conventional or liquid within a week, I think, before I start Xeloda. Onc is consulting the liver interventional radiologist about the possibility of a conventional biopsy, and also comparing two liquid biopsy companies.
Girlwithacurl, what news? Thank you; that's encouraging to know you don't have hfs.
JFL, I'm no expert, but I suppose the time of day might have some impact on lipids and blood sugar, but I wouldn't worry about it unless those things are an issue for you. So, are you saying you had hfs but kept running anyway? With sore feet?
Proudtospin, you are experiencing two important, emotionally-laden changes at once. Please take good care of yourself. Let's see if your new onc agrees with Taxol, or says Xeloda or another med. For what it's worth, I found Taxol very do-able and very effective.
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Shetland, my last scan was 10 days ago and showed progression in my liver, multiple new spots, as well as the omentum slightly larger mets. I had to stop Xgeva for two months so far due to a dental extraction. Spot on my rib got slightly bigger. Yipes.....But I get your point about Afintor being a good interim med to keep us moving along. I guess we'll see! Regarding your comment on a previous thread, bananas always seem to get me moving! LOL!
JFL, I was curious about running through the HFS too.
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So, Artist, here are some questions you might ask your onc: Is it safe to try another hormonal therapy right now? How quickly has this cancer been progressing? Is my physical condition likely to remain stable even if A/A does not work? How does my blood test look? When will we scan again? Should we consider Xeloda now and save A/A for later? Can we do any genomic testing of the tumor to direct our choice of therapy? Are tumor markers useful for me?
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I got my TM results and numbers are down! I'm very relieved though I wish I could tell you all that it's all the afinitor/faslodex working, but I'm the wacky one on Xeloda too so who knows what drug is doing what. I haven't seen the rest of my blood work yet but will get face time with my MO next week.
Shetland, my MO is not on board with the liquid biopsies yet. I'm glad your doctor is so forward thinking about that and that you get useful information either way.
Artist, I'm so sorry about the progression and frustration. It's only been a short while on A/A right
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question, i know that i have a tumor on my spine. It really did not cause any pain until just a couple days ago. I am interpreting this as it may have grown. I am starting rads tonight and in the midst of changing my onc and setting up everything at new and dif hospital
Anyone havempain like this?
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Proudtospin - I had rads on my lower jaw - there was numbness, but not much pain. 13 rounds later in a helmet from Star Wars, I had some D and weakness, but the met went away - although there is some residual pain. The issue with rads to your thorax is that there are other organs nearby and they may get hit by rays too. So please have your markers precise (sometimes they are tatooed on) and discuss all SEs with your onc and rad dr. As for your pain, it may be the met has grown and/or is pressing on a nerve near your spine - hence the pain which wasn't present earlier. Your PET scan should show if the met increased in size. Please read all your scans carefully so you are on board with next steps. Ask how many rounds of rads you are getting and how many grays (thats how rads are measured). And please keep us posted.
Artist - sorry you have some progression. I fear this drug is just an interim med until we line up for chemo, Xeloda, et al. Where are the Afinitor success ladies? I read the 3 "interviews" on the Afinitor website and not one of the ladies owned up to HOW LONG until PFS. However, I read the tables along with SP, and I am encouraged by BOLERO 4 which I am following (afinitor + letrozale). Hoping it works until better meds are ready. Girlwithacurl - I think your low dose X is doing the job. I am open to a low dose without HSF. lol
SP - you and Z are my heroes. Please get every test done to move forward. So proud of your dancing and love of cats. Mr Tiny says hello! (())
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Shetland, I ran because although my feet were bad, the act of running did not bother them. I also continued wearing heals to work - which sometimes felt more comfy than flats - the key is to rotate shoes so that any sore spot gets a break the next day, as each pair has different friction areas. When I run, I wear cushy "toe" socks that have a separate compartment for each toe like gloves to keep my toes from rubbing together and wear comfortable, cushiony yet minimalist running shoes. They are "socklike" with no tongue and no hard/stiff areas on the shoe. I imagine you have less comfy shoe options for dancing but try it before you give up hope. I would have been happy staying on Xeloda forever. So effective, particularly for liver mets. My "favorite" medicine to date.
My other recommendation would be to take a probiotic. In my informal observation,it seemed that those of us who didn't have digestive issues all took them. I take a potent daily probiotic and rotate brands to get different strains. I also eat yogurt for breakfast every week day, which I believe is even more effective than supplements. The only time I had significant digestive issues for a few days was when I went a week without the yogurt.
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Shetland, I have tried Letrozole with Ibrance which I think she took me off of Letrozole too soon thinking it made my liver enzymes skyrocket, when I think it was the high dose of Ibrance. So I moved to Faslodex with a lower dose of Ibrance, then to Arimidex which failed quickly. Now on to these two. My cancer is not super aggressive (so far). When I asked her about Xeloda she said she did not want to start a "chemo" drug so soon. My Tm's do seem to correlate pretty well with what's going on. So far my physical health is holding steady and blow work is pretty OK. I did Foundation One. is that Genomic testing? I start the Afinitor tomorrow so we'll see how it goes.
Thanks lalady, It's always good to read of news things don the pike. Afintor and Letrozole together sounds like a rough road though...
Girlwithacurl, It's always interesting to see how many different combos are going on with treatments. Like every Onc has their own creative spin on things. Kinda freaky..
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Girlwithacurl, I'm glad to hear that your TMs are down! It would be nice to know for sure which med(s) are responsible, but the main thing is that something is working.
Proudtospin, I hope the rads give you good pain relief. Let us know what your new onc says about systemic treatment.
JFL, thank you for the encouragement, and the advice on shoes. And on probiotics. That is a very useful tip. I will start by making sure I have grass-fed organic yogurt or kefir every day, and if I have problems anyway I will look into a probiotic supplement.
Artist, thank you for reminding me about your treatment history. Letrozole didn't get a fair chance, but if arimidex failed, I wouldn't expect much from letrozole at this point. But Aromasin, being a different sort of aromatase inhibitor, combined with Afinitor seems like a very sensible next step. May it last you many years! I'm glad to hear that the cancer is not too aggressive; I was worried that the "grade 3" in your stats might mean otherwise. Yes, Foundation One is what I meant. Did that tell you and your onc anything useful?
After looking into the options, my onc recommended the Guardant360 liquid biopsy for me. I'm getting blood drawn for it next week.
Lalady, how are you feeling on Afinitor and letrozole these days?
It seems like recent trials are showing that we can mix and match any of the standard anti-estrogen therapies with targeted therapies such as Afinitor and Ibrance.
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I saw my MO today for my regular check up and we talked a bit about being on the drug combo I'm on--that when I was on Ibrance, some mets were healing while new ones were showing up, so the heterogenous personality of my tumors called for two lines of attack at once. I did thank her for thinking outside the box. Who knows if I need both, but I'll keep on going with it.
But then I told her about this low grade cough I'm having...which led to a chest CT scan of course. So a 45 minute visit turned into a 4 hour visit, mostly because I had to get my insurance company to do a pre-auth and it took forever. And then that call comes--you know when you see that it's your doctor calling and you've had a scan, so your heart drops to your feet? But clean scan, no pulmonary whatever it is that Afinitor causes. Anyone else have chest congestion without it being that dreaded side effect?
I had my faslodex shots too. Some days are just really not fun. But I'm still grateful for my clean chest scan!
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Well I just spent six days in the hospital (last six days of May) with a lung infection, that was pretty dramatic, very high fever, partly delirious etc. During this time I went off Afinitor, also stayed off Afinitor for the next week trying to recover from the lung infection. During this time my ex-breast flamed up and now also has a bunch of raised spots. I went back on Afinitor last night, and will be seeing the oncologist on the 21 of june. Grrrrrr.
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amarantha, That is very scary! Interesting that they put you back on the drug so soon.....Hmmmm I'm glad you are OK but it must be nerve racking now to start back up. Seems like a long wait to see your Onc after a hospitalization?
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Amarantha, that sounds harrowing! I hope you are feeling better. Thinking good thoughts for your meeting on Monday.
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Amarantha, is it thought that Afinitor caused the lung infection?
I have been sick for over a week. Started as suspected viral laryngitis and then morphed into a suspected bacterial bronchitis. A lot of people have been sick around me and I must have caught something. I asked my MO if I should stop Afinitor and he said only if I have shortness of breath, which I do not. Also, my fever never went above 99 degrees. He said that the non-infectious pneumonia caused by Afinitor usually doesn't crop up until being on the drug longer, at least 3 months.
Is this what other people have heard? I must say, my WBC, RBC and ANC are in normal range since I started Afinitor, for the first time I time in 2 years. They were low on Ibrance and Xeloda. I read that Afinitor can increase the risk of infection but maybe it is not as bad as some of the other drugs? If it doesn't wipe out white and red blood cells and neutrophils, then one's body may have a decent defense system.
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Girl with a curl, and Artist at Heart, it was indeed harrowing, and scary and I was pretty much thinking it was time to write my epitaph. I am not that happy with the lackidaisical reaction of my oncologist. But at least she did call me at home when I got home.
JFL, the hospital doctors decided this pneumonia was infectious - bacterial, and gave me antibiotics (took three tries to get it right) but we think the Afinitor lowered my defenses making me susceptible to infection. Before I caught the pneumonia, I was exceedingly tired, and the blood levels were getting out of whack, though not enough for the doctors to be concerned, although I think they should have been! I had been complaining of feeling pain all over, like when you have an infection, and my (now ex) doctor just responded by giving me anti-depressants and placebo sugar pills ('"homeopathy"). I am very happy to report that I now have a new regular doctor, with a much more scientific attitude, extremely attentive, and a profound listener, and I guess he pretty much just saved my life.
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Amarantha and JFL - something is up with Afinitor and lung issues. There have been several comments from ladies who got worse on this med instead of better- often involving lung issues and/or infection. It seems to be a "holding" drug until we require Xeloda or IV chemo - sadly not enough ladies with long runs. My TMs rose after first round, will be rethinking this med upon return from my cruise. sigh Girlwithcurl - can you pm me how you bundled this with low dose Xeloda and fas? Miss my butt shots. lol
(())
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Well afinitor and me are not doing well. Dang but it gives me tummy pain and for 3 nights in a row, no sleep. So yesterday i did not take the afinitor. Slept great. I am meeting with my new onco tomorrow, finishing up my rads on thursday so will see what the plan will be. Old onco said the afinitor combo did not stop progression for me anyway. We can guess what is next
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lalady1, well I had hoped to convince them to give me chemo in the first place, but was pretty much told - since it didn't work in the original cancer, it was not likely to work this time either. I am going to look up Xeloda. I am very disappointed with the lack of improvement under Afinitor.
Proudtospin, sorry it is not working for you. I'll be interested to see what your new oncologist says.
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