Afinitor/Aromasin
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I don't remember where I saw this (maybe here) but someone said bacitracin cleared them right up.
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Crandall- Ask your MO to give you an Rx for Magic Mouthwash. It is mixed at the pharmacy and contains a numbing med along with two other things. It worked for me when I first started ACT chemo. It cleared pretty quick .
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Hi All
It looks like I'll be starting on Afinator next week, providing my scans are stable. Is anyone taking it with Femara? I'm really apprehensive about Afinator after reading about all the SEs and damage it causes. Has anyone any advice on what I should do to minimise the SEs? Rosevalley gave me lots of good info, I'm just wondering is there more stuff I should know. My onc said dismissively that some people can have trouble with their lungs but if that happens he'll just reduce the dose. He never said that the 'trouble' could cause permanent problems with heart and lungs. Actually I'm terrified of taking it. Faslodex and aromasin failed me. I'm worried this will also. I'm all over the house as I don't know what tx is best. QOL matters too. I've been on taxol for approx 28 months but have to say adieu as my peripheral neuropathy is getting worse in my hands and feet. Fatigue in particullar was so debilitating with that tx.but I'm still totally flattened with femara. I'm rambling now. I guess I should get my hair cut before I start getting head sores. Sounds gross...
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Aoi- Just remember you would not be on these meds if your cancer was in remission. You are already Stage 1V so don't fixate on the SE because all these drugs have some but you may not get them. My neuropathy has never left after 7 years but I am alive and enjoying my grandkids. Have they mentioned Xeloda , that will be my next as I refused to do anymore hormone blockers d/t SE I had. Any of these new therapies could cause your neuropathy to worsen also. Hugs and please take a little time to mull all of these over before starting them, maybe you need a few weeks off to recoup a little.
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Thanks, Grammy. Onc didn't mention any tx other than Afinator. I'm having a bone scan on Mon and ct scan on Tues and if I'm stable I'll be starting it then. I am scared not being on any tx except femara in the meantime as I feel the cancer could start growing again. I'm sorry to hear about your neuropathy but glad that you are enjoying your life and your grandskids. Will you be starting on Xeloda soon? (Also I hadn't realised that other tx could worsen neuropathy.) Take care. Hugs xx
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Aoib- A very similar transplant anti rejection drug called Sirolimus was being used when I worked in Kidney transplant. The most frequent SE was diabetes not heart or lung issues. Monitoring blood levels essential.
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Brandall,
The mouth sores are the worst with Affinitor. The only thing that gave me some relief was a product I ordered online for $20. It's Durhams Canker-Rid, a bee pollen that you put on sore; it dries quickly and will cover sore for a day to relieve the pain. The magic mouthwash did not work too well for me as it was very temorary relief. Hope you are doing better.
Terri
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Grammy, thanks for the heads up re diabetes. As far as I know they're doing the standard bloods for chemo. I ask every so often to have my cholesterol checked as I'm on statins and go in fasting for that. I am concerned about heart probs as genetically both sides of my family had heart issues in later life and I always thought that's what would get me!
By the way, what is the correct name for magic mouthwash please? I hope it's available over here..
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Aoibheann-
I was at my onc's office yesterday getting my blood tested for my next Ibrance cycle, and he happened to say something interesting about Affinitor. In discussing how the drug companies get their approvals, he mentioned that often the original dosage is too high for a lot of people, and dropping it down doesn't necessarily change the outcome (depends on the drug of course.) He said that the trial dosages are often high in order to make sure it has success and gets approved. This came up in regards to my getting a reduced dose of Ibrance if my counts continued to drop, but he said that his office (6 very good doctors)no longer prescribe the 10mg dose of Affinitor, and they start everyone at the lower dose, and it's been working just fine.
I just wanted you to have that information in case it might make a difference. Apparently side effects are greatly reduced with the lower dosages.
This same onc gave me Faslodex after my bone recurrence, and it worked well for me for over three years. I think Affinitor/Aromasin is in the cards for me when Ibrance/Femara fails, but it seems a lot less scary knowing I won't be starting at 10mgs.
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That's good to know, Sandilee, thank you for the info. I will definitely mention it to my onc when I see him on Tues. He did say that if I had problems with my lungs he'd reduce the dosage but it would be better. imo. to start low.
As a by the by, isn't it weird that Pfizer(Irl) will only accept people who have had/failed 4 previous tx to be eligible to apply for Ibrance on compassionate grounds. I'm so ticked off.
I hope that your bloods are ok and that Ibrance will keep the beast at bay for a good long time. Take care xx
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Sandilee - great info on the A/A combo - my onc wouldn't lower my dosage and I ended up having to drop off it and go on Faslodex as the se's were just too much - she said she wouldn't lower the dose because the studies were done on 10 mg. and "that's that" - I am in Canada and will talk to her next appointment to ask if anyone is lowering the dose up here - honestly, I was fine on 5 mg and 7.5 but when we hit 10 - I hit the wall. The Faslodex is working so far but want to know from her if I can go back to A/A if it stops working - honestly I wish everyone would get on the same page re dosages for these drugs - some of us are more sensitive to them than others and I think the oncs should be able to change the dosages - but what do I know????!
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I've been reading through this thread a bit as I'm starting on this combo on Monday. I'm very concerned about the side effects because I work full time
Sandilee thanks for the info about reduced dosages.
Since it's the weekend and the meds should be in pharmacy for pick-up Monday it's too late to ask about the lower dosage now. I have Kaiser and it is like a secret society getting the afinitor. I can't use the mail order system and have to go through the oncology pharmacy specialist who will order it once he reviews my blood work. I'm not even sure what dosage has been ordered but guessing it's 10 mg. Are the afinitor pillls easily split? If so, I might just do that from the get go if I have 10mg and ask for forgiveness later. :-)
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. Aiobheann- I didn't know that Pfizer required four failed tx before you could get the drug on compassionate grounds. Most insurance companies are covering this now in the US. I guess I don't know why someone would need to get in on compassionate grounds when it's available when prescribed in the US. Is it because you're in Ireland? I wonder if Pfizer is trying to put pressure on your government to approve and pay for it by making it difficult. (Is your health care through the government? I don't know much about European health care practices.)
208Sandy- That's a bummer about having to stop Affinitor when it was working, even on the 7.5. Maybe you could ask you doc (tactfully) to look into it for the future. There also may be studies. I remember a panel I watched from some medical site that had doctors discussing Affinitor and the side effects and many of them were reducing to 7.5. I think they were from UCSF, but I'm not sure. I may go back and see if I can find it.
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In the manufacturer's information for Affinitor, pages 4 and 5 discuss situations that might necessitate lowering the dose. They recommend that the clinician evaluate and treat accordingly.
https://www.pharma.us.novartis.com/product/pi/pdf/...
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I am getting off the A/A bus. After 14 months, it has now failed and allowed some liver tumours to return. Ugghh... I knew this was coming as scan 3 months ago showed some small stuff but I convinced MO to let me stay on it until next scan and sure enough, they have grown a little bit. I had a totally easy time on this. I had some mouth sores about 6 weeks in and also had the acne, but other than that, it was fine. I travelled, had energy and a good time. Yes, some people have a hard time with this, but I sailed through it.
I am now waiting at the Halaven bus stop, but will not start for a few weeks as I have a big party to go to and I told MO I want to look and feel my best for that!
Good luck to all on this ride, and remember that we all react differently, so do not fear it.
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Sandilee - thanks so much for info - I'm going to bring it to oncs attention.
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Sandilee, Ibrance won't be licenced in Europe until the end of 2016 hence the only way of getting it here is on compassionate grounds.
thisisme, best of luck on Havalen. It was good to hear that Afinitor worked for you.
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Thought I'd stop by and check on my AA peeps. Hope you are all doing well. This wasn't an easy combo for me, but it did get better with time. Hang in there!
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Hi Sandy, I have been on Affinitor and Aromosin for a year and a half. My doc is at PMH in CANADA and I am on 5 mg a day so that is crap..... you can take a lower dose. I can't say it has been easy- but I just swam 20 laps and cut the lawn and work full time so it is doable.. and you can do it. Be your own advocate or go to the Breast Clinic at PMH and ask.
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Hi there Toronto - don't worry I AM my own advocate - my MO told me that I am her "best informed patient ever" - I asked for a referral to PMH a couple of years ago when I thought I wasn't getting up to date treatment but we managed to hash that out and I am doing well but I wanted to know about a lower AA dose because I had regression on that damned stuff so if the Faslodex lets me down then I will fight to get back on AA and meanwhile I am going to serve her notice on the 17th that if PMH is lowering dosage then she'd better get on board. I'd go to PMH but I am way out in Burlington so not feasible.
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Hi Sandy-I hope things go well with your MO and Faslodex.This is such a strange land that we have to navigate by ourselves most of the time. I will cross my fingers for you. Things are hard enough without having to doubt our doctors.Best, T
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Hi all,
I'm presently on Aromasin. My makers have been elevating which required another bone scan. This time there was progression in the bones but nothing in the organs. My onc is now adding Afinitor to the mix. Can anyone advise how is the best way to take the meds that may help prevent the mouth cores? I read earlier in the discussion about placing the pills in marshmallow crème. Has anyone tried it?
Wishing you the best,
Highhopes
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Just wanted to mention that my oncologist is starting all Affinitor patients on 5mgs. He feels they do just as well, and better because they can stay on it without harsh SEs. He's a very by-the-books kind of guy, but feels that the doses that are initially approved are too high for many patients. Trials use the higher doses because they want results to be fast and uniform. But they don't take into account individual differences, like weight and overall health.
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we use clear geleten capsuls from the health food store or e-bay== it helps
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HI everybody, just wanted to let you know how it went for me with Afinitor with Aromasin, I was on it from mid September to mid January. During that time (October) a pelvic met got markedly more painful, I mean disabling and excruciating and reason for heavy painkillers and a cane to walk with, but it must have been a kind of flare because it was gone by Christmas. I wanted to have the met radiated but they asked me not to so we could see if the Afinitor would work, which it did. Side effects were not so bad, nothing dangerous like diabetes or lung issues, although I needed to increase my blood pressure medication, which I had already been taking pre-Afinitor. I had only one mouth sore that lasted a day or two and acne and dry skin together. I had something all over my head that seemed like pimples. I had worsening brain fog, not only having trouble remembering words but even using the wrong ones. I don't think I got the rash, but the reason for quitting it was that one day, when I was under awful stress about my teenage son, my face swelled up and we had to wonder if it was an allergic reaction. Meanwhile a small lung met which had emerged in a CAT scan in December stayed the same when a new CAT scan was done in June, but in the meantime several other small ones had developed by then. Long story short, I was started two weeks ago on Femara, and if and when I get worse (the next scan will be in October) I will take Xeloda with an antibody, I forget what it was called. The first day or two on Femara I was wiped out, but taking it before bed solved that problem. (I may also have been wiped out from the news that the lung mets had spread.) I take several medications for Bipolar disorder since diagnosed in 2005. I am used to fatigue and poor concentration and when stressed out I take long naps. Meanwhile despite having one pelvic met irradiated in April ( pain returned in March) I take Dilaudid because the other pelvic met from 2012 could not be treated with radiation a second time.
That was a little complicated but I hope it is helpful. The bottom line is that the Afinitor took out two bone mets until it was discontinued, after which the mets returned. Lung mets are scary but I have a good attitude and fear dying only because of the loss to my three children and my husband. Haven't told my 86 year old mom in New York about the mets because she is a heart patient. I expect to live quite a while because, as my onc says, my cancer is extremely slow growing and can be thought of as a chronic disease. We will go through all the treatments we can and hope for new ones. I am a Buddhist and through cognitive therapy for the bipolar illness have concluded that I don't have a crystal ball and so I do not assume the worst. I stay in the here and now and have elected not to tell my eleven year old daughter until things are much worse. I just don't want to scare her. (A few years ago when we explained to her what an addiction is, she said she was addicted to Mommy.) My thirteen year old son knows about the bone mets but I have told him that they by themselves are not fatal. My fifteen year old knows that I have metastatic breast cancer and. He is high functioning autistic and the therapist told me he knows more than we think, through sleuthing. I told him not to worry.
Sorry to go on and on about the family, but it helps me to share it.
WIsh you all the best, and whatever happens don't be afraid to take Afinitor. You may not get all the side effects and most are very doable. And it clearly worked for me while I was on it.
Peace to you all,
Lisa
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Your family sounds wonderful, Lisa. All my best to you.
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Lisa - thanks for sharing. I appreciate all the input on the A/A combo as I am told it will be my next tx when progression knocks on my door.
It was good to hear from you. Hope Femara works well for you. It certainly does for me.
Linda
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Vision 1 - thank you for the suggestion about gel caps. What size gel caps did you get? I was going to order them online but saw there were several sizes.
Highhopes.
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Well here I am
I started Aromasin a couple of weeks ago and today I got Affinator. The cancer pharmacist sat down with me and we talked about side effects, drug interatctions, the medication in general, and even what supplements I take. I left feeling very cared for, he even gave me his direct line to call in which is a first! Usually for everything you have to go through the cancer center/hospital switchboard and it can take a long time. He was very optimistic about it all, and I asked a lot of questions! So I am feeling better about taking it. I haven't decided if I should take it a night or in the morning. I like to enjoy a glass of wine some evenings, especially now that the weather is so nice it is wonderful just to sit outside with Dh and have a glass of wine. So I am thinking mornings might be a better time. I just want to maximize anything I can do to make this work. I feel like my options are flying by and I just want to grab time by hand and make it stand still for a while!
So is anyone still on this combo? Having success I hope!
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Starbright,
I'm also on the Aromasin and Afinitor. When I started, I, too, asked the pharmacist many questions. I was told that Aromasin needs to be taken with a meal while Afinitor can be taken with water. I was also informed that I cannot take them together that it needs to be between 3 or 4 hours apart. I ended up taking Aromasin when I have lunch and then I take Afinitor at night before I go to bed so I can enjoy a glass of wine. Do not take grapefruit. For some reason, grapefruit affects the meds.
Get some empty gel capsules for the Afinitor. I've been using them for the past 6 weeks and so far no mouth sores.
Good luck, hope all works out well.
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