Afinitor/Aromasin
Comments
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Pearlady
My oncologist told me to get the flu shot. They encourage all of their patients to get it. They just don't want us to get shingles vaccine because that is a live virus.0 -
Raro, you need to stay away from the hospital! Glad to hear you are doing better though and the nail polish story is funny!!! LOL I didn't realize it was the afinitor killing my nails. I always thought it was the herceptin but I am going to start using a clear nail polish and see what happens.
I was never told not to get a flu shot, in fact my onc wants us to get them. This year was my 5 year mark for my pneumonia vaccine also so I got both on the same day.
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Just reiterating what CareBear said. With Affinitor we have to avoid "live virus" vaccines, not all vaccines. Usually the flu vaccine is not live virus.However, as always, check with your oncologist before getting any vaccine and be sure to confirm whether it is "live" or not.
Live virus means they inject the actual live virus, a small amount, to expose your immune system to it. Healthy people's immune system's will mount a response to the invader virus and kill it. Then when you are exposed again, your immune system sort of remembers what it is and what to do. If your immune system is compromised, which it can be for any cancer patient on any treatment, you would not want a live virus injecteded because your immune system may not mount a response to the invading virus and then it spreads and you get the flu!
Non-live virus vaccines do not work this way. So, they are safe usually for most immunocomprimised individuals, but again not always. Always consult your oncologist!
DG0 -
Ladies thanks for the info on the flu shots. I am going to speak to my onc again next week. I want to get it this year as its stressful worrying about it while working and everyone being sick. I am fortunate that I insisted on the shingles vaccine before I started afinitor. Insurance wouldn't pay, but I thought it was well worth the investment.
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is the shingles vaccine a live vaccine? I was curious about asking about that one because I have seen a few people with it and they were miserable!
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Shingles is a live virus. I asked my onc if I should take it while I was still on Femara but he didn't want me to take a live virus vaccine.
I'll ask him about the flu shot when it's time to get it. For me, part of the problem might be that the last few times I got the shot I was mildly sick for a few days afterwards. I don't know what would happen now that I'm on A/A.
Leah
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If you are able to get the shingles vaccination then I would do it - I got shingles two months ago and was miserable. I never knew there was a vaccination available
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I had requested the shingles vaccine after I knew two people who were totally miserable with it. My onc agreed to give it to me and I then waited 30 days before starting the Afinitor. I thought the flu was a live vaccine also, but not sure. I am definitely going to discuss with him again.
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I had shingles in my 20's and it is no joke. The pain is so bad you want to rip your hair out. I was wondering since I had shingles do i need a shot for that or it's a once in a life time thing? Stupid question but better be safe than sorry. Because bones mets and shingles don't mix well together.
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Apparently you can get shingles more than once. I just found this link from the Wall Street Journal. I've never had shingles and hope to keep it that way. I'm wondering if the vaccine is for a lifetime. I have to do some research on that. I would talk to you onc about it, but I don't think they will give you the shingles vaccine while on Afinitor.
http://online.wsj.com/article/SB10001424052748704476604576158262168447774.html
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Come to think about I am 41 years old and body been through so much I am surprised it dont run away from me. Shingles, cancer 2 times how much can a person take. I hope things get better. To many cloudy days. The only blessing in my life is my 2 boys. When I look at them I forget all the pain and this horrible disease. We all need a bit of sunshine in hour life's. My husband I had a brief discussion today. He said stella you are a true hero you are so brave and strong. How do u do it? Honestly I dont know how we all do it we just do it it's not like we have too many choices.. Little of subject.
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Stella it sounds as if your husband is a blessing in your life also. You are very fortunate to have someone so supportive and caring. When I read these boards and some of the women who post, I realize that we are all going through so many similar, yet unique challenges. I am so inspired by how strong some of the women are, dealing with worse than I've dealt with so far. I've been told that God doesn't give us any challenges that we can't rise to. Iknow for me, as crazy as it sounds, the original cancer diagnosis made me re-evaluate my life and my marriage. I left my husband in 1999. A nice person, but the marriage wasn't right. I am so fortunate to have a wonderful soulmate that I've been with since 2000. I really believe that the cancer helped me to make the positive changes in my life. Sometimes, however, I get angry and think it was a high price to pay. But who knows???
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This shingles discussion is timely. I just came back from the onc and she said the blisters and pain in my arm is because of shingles. It really hurts. The fun never ends. She also gave me Flovent inhaler and steroidal gum paste for my mouth sores. Apparently the inhaler helps get the steriods to the mouth sores deeper in the throat and back
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Formygirls, just checking in with you. I hope that you are doing better and that the shingles is not causing you too much pain. I know shingles can be very painful. My husband had it about ten years ago and was in agony for almost a month. That's why as soon as the vaccine came out I begged my onc for it. He said that they usually give it to older people but that I could have it. Insurance would not pay, but I never regretted paying for it myself. Especially now that I wouldn't be able to get while on Afinitor.
I hope that you've gotten some resolutation regarding the radiation. It's really awful how insurance tries to control our destiny. Who needs that when we have enough to worry about.
I think about you very often.
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Pearlady,
Thankyou for thinking of me. My shingles are bad but not as bad as my nausea, vomiting and diarrhea. I am really struggling with that and am constantly near the porcelain throne .Luckily, my mouth sores have finally healed so yay for that. I have scans next week for my body and hope all this is worth it.
meanwhile I spend all my days on the phone with ins. I continue to appeal my brain radiation and they have denied every claim. I am in the last stage of appeals to the California state insurance body for an independent medical review. The only positive about this is that it forces me to not dwell on the scary part that my brain mets are growing. I am really struggling whether it is worth to spend 30k of my savings on tx which may buy me a few months.0 -
Formygirls, I'm sure that your family will think the extra time with you is worth it. And you never know, the extra time may be more than what you think.
I am so sorry that you are going through all of this. I can tell you that the bad diahhrea can be from the Metformin also. I had to stop Metformin due to the D issues, but am starting again on a lower dose. With the TDM1 and lower dose of afinitor it shouldn't be as bad. I have two friends with diabetes who had to stop Metformin due to the diahhrea. The good news is, my friend told me that her problem did get better after two months.
Please hang in there. You are worth it and the extra time with your family is worth more than dollars.
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Thankyou. Your support means so much to me. I think my diarrhea is from a combination of tykerb, Xeloda and Afinitor. I have been on metformin for over a year and did not have such bad problems till I started this latest cocktail.
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Yes, the Afinitor can cause the big D as well. When I first started on the Afinitor it was dreadful. But unlike the Perjeta, which for me was horrible the entire time I was on it, the situation has improved with the afinitor. So hang in there and it will probably get better. My onc promised me that it would and he was right. Also, with the Xeloda you can get it also, but that is usually only the first month or so, so that should get better. I am a bit nervous starting the Metformin again as it killed me before. But I know it can't be as bad as the Perjeta and he told me to take just what I can tolerate.
Please hang in there. I hope that you are successful with the insurance issues.
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Fomygirls,
Hi! I've been away for a while, so glad to see you resurface but sorry to hear of your insurance and SE problems.
Might I ask? Are you taking the Aromasin with the Affinitor (is that a dumb question given the name of this thread)? You only mention Xeloda, Tykerb and Affinitor, not the Aromasin. Just wondering. I know you were triple negative with a subsequent positive hormone receptor status.
That is some kind of toxic cocktail you got going there, no wonder you are feeling so poorly. In response to your question about spending $30 K on radiation, only you can make that decision, based on your finances, beliefs and current quality of life. It IS a reasonable question, I just don't think any of us can answer that one for you. Have you discussed that question with your doctors and family, or is that a hard topic to go to with your family?
I guess my questions are rhetorical for the most part, just wanting to help and validate you but can only think to do so by reflecting your thinking back at you. I hope that makes some sense to you. I know your family may not be able to handle such a question as is the radiation worth it ($30 K or no $30K) so talking about it here is good....don't interpret the silence as meaning no one wants to discuss it.
Feel free to let us know your thinking on the subject.....at least you will get it out there, even if we cant tell you what to do. Your struggle is our struggle....
Praying for you still!
DG0 -
Fomygirls,
Hi! I've been away for a while, so glad to see you resurface but sorry to hear of your insurance and SE problems.
Might I ask? Are you taking the Aromasin with the Affinitor (is that a dumb question given the name of this thread)? You only mention Xeloda, Tykerb and Affinitor, not the Aromasin. Just wondering. I know you were triple negative with a subsequent positive hormone receptor status.
That is some kind of toxic cocktail you got going there, no wonder you are feeling so poorly. In response to your question about spending $30 K on radiation, only you can make that decision, based on your finances, beliefs and current quality of life. It IS a reasonable question, I just don't think any of us can answer that one for you. Have you discussed that question with your doctors and family, or is that a hard topic to go to with your family?
I guess my questions are rhetorical for the most part, just wanting to help and validate you but can only think to do so by reflecting your thinking back at you. I hope that makes some sense to you. I know your family may not be able to handle such a question as is the radiation worth it ($30 K or no $30K) so talking about it here is good....don't interpret the silence as meaning no one wants to discuss it.
Feel free to let us know your thinking on the subject.....at least you will get it out there, even if we cant tell you what to do. Your struggle is our struggle....
Praying for you still!
DG
Anyway, as far as the Shingles go, I know there is a medication called Lyrica that is used for shingles pain, as well as other kinds of pain. I used it for a while for my bone mets and found it useful. However, it does come with some potentially dangerous side effects so anyone looking into it should read up.0 -
Pearlady, I am hoping today finds you feeling just a little bit better. Know that I am sending you all best vibes and lovingkindness. Are there any options besides radiation that your insurance company suggests they might pay for? Or are they basically saying they no longer care if you live or die? I would point-blank ask your case-worker that question, and if you don't know your case worker, call and find out, and if they say you don't have one, ask for one. And ask to speak directly to their medical director or have your doc speak directly to their medical director if that doesn't work out. I know, a lot of phone calls and conversations, and it takes me several days or weeks of procrastinating to actually pick up the phone for one of these conversations.
I woke up this week realizing I no longer have tongue soreness - had just a small sore started for a couple months that never progressed, along with tongue tip burning. Had rash on arms that has disappeared. Knock on wood today, wondering when the next set of SEs will kick in, just enjoying today without them! I am grateful today for that at least!0 -
Linda, I'm glad you're feeling better and some of the SEs are milder. Sometimes we get awful SEs on some of the stuff we're on, and then our bodies adjust and the SEs become milder or stop completely. I sure hope that's what's happening with you.
I have a feeling that this coming Thurs at my onc appt we're going to have to reevaluate this combo for me. I was sick almost 2 months ago and since then I've been feeling ill and running a fever every night. Daytime I feel OK (not great but OK). Last time I saw him (I go in to see him every month right now) we talked about the fever and wondered if it was lingering from the bad virus I'd had or if it was from the Afinitor. Doc was hoping it was the virus since apparently recurring fever from a drug is NOT GOOD. I also have NO appetite, food tastes weird, sweet stuff tastes bitter, and I've lost 16 pounds in 2 1/2 months. I hate the thought of changing meds. It's like, one more chance gone.
Leah
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Linda thank you for your concern. I think you are confusing me with someone else. I am not getting radiation or thankfully need it at the durrent time. My situation is bone mets and I am on Afinitor/Aromisin/TDM1 (for the Her2nu). I also just started back on Metformin. Was it on last year and had major big D issues, but I've heard so much positive about it that I am willing to try again. I am taking every other day right now and so far so good. Will try to up to every day after I'm sure that it's not causing the same issues. The afinitor/aromisin has been one of those drugs for me that has gotten better. When I first started I had terrible gastro issues and rash. Now very little gastro issues and no rash. So I would say everyone should hang in with the A/A, in that it does get easier.
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Pearlady, it may have been Dragongirl ... my apoligies!
Well, I can really taste food again, wine tastes good! But new sore spot on other side of tongue ... did I speak too soon???? Oh, well .... reminds me to be better at mouth care and drinking lots of water.
Saw the MO yesterday ... have had LE issues to discuss, but while I was there, she checked tumor under arm and thinks it is responding a little!!!! Nothing definite, nothing huge, but maybe a little????? Gave me a few moments of hope that I have not had in abut 6 weeks. The LE is the straw that almost broke the camel's back. Still struggling with it and riding THAT roller coaster for a while.
Best to all of you tonight.0 -
Thank you all for your input regarding my radiation dilemma. Before I give you an update, I wanted to share that I had CT scans of the liver and lungs today and I had regression and no new lesions. This is the first piece of good news in a long time. I really appreciate your support in pushing me along. The se are worth it if it can buy more time. This combo has also reduced my TMs from 190 to 90.
I have decided to go ahead with steriotatic rads for my brain but I am fighting one last appeal with Cigna and have also filed an IMR with the state of CA ins appeals. Will know more by next week but will self pay if all appeals get rejected. Especially since the chemo is working, I do not do to WBR and stay off chemo for three weeks.
Dragon girl,
I am not doing Aromosin as I am only 1 percent ER + and Onc did not want to add anything more to my cocktail of Xeloda, Afinitor, tykerb andnherceptin.
Linda,
I did start using Mugard for mouth sores. It is too early to tell if it works but can't hurt. You can call their number and they send you a six week supply for free.0 -
Regression......LOVE THAT WORD! I'm SO happy for you. Thanks for letting us hear great news!
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Well I started today aromasin and still waiting for afintor to be approved by insurance co. I am keeping my fingers crossed. I did have a bit of a side effect from aromasin. Very sleepy and tiredsome. But after 2 aleves I feel better.
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Formygirls I am so happy for you. Love to hear REGRESSION. I'm so glad that the afinitor is doing its job. Yes, when you get positive results, the SE's are worth it. I know that we're all different but I can tell you that the SE's for me have gotten better with the afinitor. Unlike some drugs where the SE's don't improve. I hope that you get your insurance situation straightened out. Awful that we have to deal with this as if the illness isn't bad enough. It sounds, however, that you are making wise decisions. Will keep on praying for you.
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Did anybody get to Ned with this combo or anybody you know. I am just curious I will be happy with stable but just want to know???
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Hi sisters! Haven't been in touch for a while. Recently came across Medijel described as Oromucosal Gel and it is, as I type, helping my sore tongue and raw inside cheek. Hope it helps some of your problems.
In my first week of A/A one of my eyes started giving trouble, itchy, watery, smarting etc. Artelac didn't help. It was only recently when I checked up on 'common side effects' that I found it listed there. Chloromycetin was prescribed by onc. but only made matters worse. Any suggestions?
Good vibes to all.
Mariol
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