Afinitor/Aromasin
Comments
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girl, you are no more off your rocker than me or the rest of us.
Also, my onco just booked me for my first pet scan since starting the afinitor and hoping for good results like yours
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I have been curious about reiki for years. If we were having this conversation in real life, I would say practice on me, girlwithacurl. Let's add getting a new dog to the list of hopeful things. How about home improvement and decorating? It feels a little like a race against time, but I hope to enjoy it for a long time.
I'm not sure where I stand with Afinitor + Faslodex right now. TMs went up some more, but because the scan showed improved SUV in spite of some larger lesions (necrosis?) my onc is giving it one more month (total of 4) for them to go down before we look at liver radioembolization. My TM rise preceded my scan when the mets woke up; i.e. that was the first test that showed something brewing. It coincided with my subtle physical symptoms. I keep thinking that if I up all my lifestyle stuff in the next four weeks, maybe that will help the drugs to work. And yet I am finding it hard to be so very good about diet, exercise, sleep, etc.
How do you feel, proudtospin?
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well results of pet scan, after 3 months on this combo. Showing mets to spine and back so treatment is radiation daily for 2 weeks
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Shetland, the lifestyle stuff is so hard--it's like a full time job just to remember all the stuff we should be doing. But you also can't beat yourself up for not doing everything. If we exercised, meditated, ate our chosen diet, got a full night of sleep, swished our mouthwash, took our supplements and everything else, then when would we have time or brain space to garden?
Also I am still totally a novice, but I did learn how to do distance reiki, so I could actually practice on you!
Proudtospin, so sorry about the mets. Are they going to let you stay on these drugs still?
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Shetland, the lifestyle stuff is so hard--it's like a full time job just to remember all the stuff we should be doing. But you also can't beat yourself up for not doing everything. If we exercised, meditated, ate our chosen diet, got a full night of sleep, swished our mouthwash, took our supplements and everything else, then when would we have time or brain space to garden?
Also I am still totally a novice, but I did learn how to do distance reiki, so I could actually practice on you!
Proudtospin, so sorry about the mets. Are they going to let you stay on these drugs still?
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not sure on the future of the drugs. Just managed to get first review with an ro. My onc is out till wed so she will review that. For now, just taking them as instructed.
Gee in the midst of all this i started having bad tummy problems. Tried a new gastro doc. This one with referral from my onc. So the first person i talked to asked me if i was lactose intollerant. Apparantly it is a nifty side effect of certain cancer treatments........so ,switched to lactose free milks...........n more tummy pain!
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Proudtospin, did you mean no more tummy pain? It's hard to wait for your Wednesday appointment, I'm sure. Are these new back and spine mets?
Yup, a full-time job, girl. Good point -- taking time to garden and do other things that make us happy may be more important to our well-being than following our resolutions perfectly.
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Proud to spin, I am so sorry to hear about the results of your PET scan. I do hope the radiation will be a spectacular success. Thinking of you.
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shetland, yeah, no more tummy pain, been drinking lactose free milk, have stayed away from cheese for now
But no tummy pain, i checked on line and mayo clinic does say it can be a side effect of some cancer treatment, seems it is also more common for folks over 60
Ama....i am hoping for spectacular results also
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Hi all. I have been following this thread a bit because my ONC mentioned that this would be my next treatment. I am currently on Xeloda but it looks like I have progression. Final PET-CT results not yet published. I am wondering the range of how long Afinitor works. Can I expect anything more than a few months? Also, I have heard that cancer tends to get more aggressive upon Afinitor failure. Has anyone else heard about that? I feel so deflated right now.
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Hi ladies - joining you as Afinitor + letrozale will be my meds next week after progression on Ibrance + faslodex after 18 rounds. I am planning to get the dexamethasone mouthwash. What do you ladies take afinitor with - yogurt, applesauce, honey? I hear it can burn and causes some nasty mouth sores. Any other SE's to be concerned about? Anyone on this a long time? Proudtospin are you moving on after 3mos? JFL - this is scary if cancer gets more aggressive after this med. Girlwithacurl - can you post when you started Afinitor on your profile? Thank you ladies for any info.
(()) Claire
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Does anyone know if you have to have the Mtor, AKT, P13K mutations for Affinitor to work?
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Hi Clair
I started on Afinitor 6 months ago on the 10mg... I never got mouth sores I always took the pill with a little whip cream on it and swallowed with a glass of water.
I did get a lung infection with the 10mg after 6 weeks and also had shortness of breath had to go off for 2 weeks to take anabiotic and steroids. I started seeing lung doctor with my ong.
After I finished 10mg doctor placed me on 7.5mg still had shortness of breath but no lung infection went to lung doctor because I came down with a cold. He consulted with my doctor ong and they decided to place me on 5mg.
I've been on 5mg Afinitor for 3 months so far so good however if I do not take my Afinitor with whip cream I start to get month sores so for me....I take it with whip cream and drink LOTS of water.
It's not a bad pill just listen to your body as with any drug!
Good luck you'll do great I'm sure on this drug and of you have any questions please reach out.
Hugs 🤗
Kim
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lalady will do. I take my pills with applesauce and it goes down very easily.
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I only know for now that i am to do rads, not sure yet if i am to continue on the affinitor. I take the dang pill with milk, seems i have also recently become lactose intolerant so no more yogurt but i take a big gulp, then add the pill and down more mìlk , as in that funky lactose free stuff
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Has anyone here been on Affinitor for a long period of time? It seems to me that not a lot are on this drug and that bothers me. Let me know if anyone has had any positive results!
Robin
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saying goodbye. A/A has been relatively easy after the initial mouth sores. But my Doc and I decide to throw in towel after the marker doubled in a month and the tumor seems to be pressing against nerves cos I am in pain. Good thing is that the tumor is confined to my supra clavicle node. It has been a good 14 months and I have taken four vacations with my children and hubby. Now it's gemzar to shrink it and hopefully bring back NED
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Hi Yangtan - sorry to hear you had progression, but happy you had a good run of 14 mos. How and when did you take your Afinitor? I start mine this week at 5mg and very curious. Hi Key2 - thanks for the tips! I like whip cream.
Hi lovely Rpoole - hoping there are several ladies with long runs on this protocol. Are you still on Xeloda or on A/A - if so, please update your profile. (()) Claire
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Hi Claire, Yes I am on day 6 of 10mg of AA. So far some abdominal cramps but that's it!! I will update profile! Hope you are doing well and we all get a long run on AA with no serious side effects!
Robin
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Robin - sorry you are here, but happy to see another Ibrance friend.
How was Xeloda for you? Is A/A easier? I will be on Afinitor +letrozale (BOLERO 4) starting this week. I start at 5mg and work up to 10mg, and have a Baltic cruise planned for last week of June that onc said "take the week off Afinitor". weee! I am stocking up on applesauce and may get gelatin caps for my meds. (()) Claire
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Claire, I was only on Xeloda 6 weeks and had progression, so MO wanted to move on. I really don't think we gave it time. I had a lot of nausea on Xeloda. So far Affinitor has been easy......but I'm only on day 7! I will be spending 10 day in Vegas starting May 26th, so I hope to continue with no side effects!!!
Robin
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Hello! I am joining you on Sunday, coming off of 14 successful months of Xeloda. Not happy to be here but happy to have all of you so we can share experiences, stories and insight. Honestly, I am hoping to get at least 9 months out of A/A but am not setting my expectations too high.
I am currently in that freakout phase of "Do I actually need to admit to myself that I might die in the next few years?" I have been living in Denial the last 2.5 years. I have no desire to "get my affairs in order" and prepare for the worst, and no desire to admit I might die of this some day. I feel I need to keep my will strong for my 2-year old.
Anyway, hope this treatment works well for each and every one of you for a very long time.
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Proudtospin, yes lactose intolerance can occur as a person gets older. I believe that hard aged cheese and live-culture yogurt are fine if you are lactose intolerant.
Rpoole, I have been thinking about your comment that you don't see a lot of people on Afinitor for a long time. One thing that occurs to me is that in the past many discontinued because of severe mouth sores. That should change now that we have the dexa rinse. Another thing is that this drug is often third line or later for endocrine therapies, and I think typically people get a longer run on things earlier in the game. (Need to verify this idea with my onc.)
Yangtan, 14 months isn't bad. Of course more would have been better. Best wishes for a super response to your next treatment. I'm curious about your onc's reasons for choosing Gemzar since I see so many people who get Xeloda for their first chemo after anti-estrogens fail. Do you know?
Lalady, are gelatin caps ok with your onc? They don't affect absorption or anything?
JFL. Everything you said about the freakout phase and coming out of the denial that helps us live day to day.
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SP - I have blisters on my tongue and no gel caps as my pharmacy didn't have them. Strawberry yoghurt is not working that well, nor is the dexa-something mouthwash. I will see my onc next week to see if there is anything better to get rid of the tiny but constant blister at the end of my tongue. Energy is ok, just back from work. JFL - lets both shoot for a year on this combo, it beats some other choices. I have a 6 mos old nephew at my home, so plenty of action and noise here! Robin - how was Vegas? I am taking my Baltic cruise in June. Yeah!
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Lala, I am definitely on board with 1 year target!
Yangtan, I hope Gemzar obliterates your supraclavical node tumor!
Robin, I am curious why your MO took you off Xeloda so quickly since it is known to cause an initial tumor flare reaction. Was it pretty clear your progression wasn't flare? What kind of scans do you receive? About the PI3K/MTOR mutation status, I believe the jury is still out on whether one needs the mutation to receive a benefit.
All, what is the specific reason for taking the pills in yogurt, whipped cream, etc? It sounds like many are doing it. Is it believed mouth contact with the pill itself will cause more mouth sores? I have been trying to throw mine back with as little mouth contact as possible. Should I be requesting gel caps?
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Shetland, thanks for your thoughts on the AA combo. I agree with you that a lot of patients stopped this drug due to mouth sores. I had my blood work done at day 7 on this combo and my tumor markers were down 9 points. I didn't think any of the meds could work that fast. I hope the downward trend continues. I am on day 14 today and not bad side effects at all.
Claire, I leave for Vegas next Friday for 10 days!!! I'm looking forward to escaping my reality and not giving the beast any thought!!
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I took my afinitor first thing in the morning after I drank two glasses of water, followed by more water. Then I rinsed with baking soda water. After a few weeks no more mouth sores and also no more cancer, that is not Can't be felt. I was on 5 mg only. I traveled with my family and spent quality time. Then sometime in Jan I felt that lump and the oncologist up the dosage to 7.5 mg to control. Unfortunately early this mouth my marker doubled and I started having excruciating pain so we fired afinitor and went onto gemzar. Had two doses and the pain is gone now.
Gonna start my herb garden a teeny bundle of mint at the supermarket cost s$3. And chemo or not as long as I am able I am going to see whales this July, God willing
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well i am to continue on the aa stuff but seeing a radiation doc tomorrow for the tumor on my spine, will see how it goes and thinking strong positive those
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yangtan, whales are the best! They have such healing energy.
I've only been doing my dexa wash once a day and then stopped to see what happened. I started feeling a sore coming on so back I go on the wash.
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i have been doing the dexa mouthwash twice a day, supplimented by saltwater rinse and lots of vasaline onmy lips
So far so good
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