Afinitor/Aromasin
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I have found the past 3 months rough so hopefully I feel better on the new meds
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Yes. Afinitor just wasn't right for you. Good wishes!
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I honestly think some of that was I need something other then the anti hormonals for a while..I think the cancer is getting smart and working around them...
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That makes sense to me, keetmom. Maybe after some chemo you can go to something fairly easy (for most) like tamoxifen. Next time I need to change I can see myself doing some chemo before trying Aromasin.
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I am hoping chemo knocks it down..If this doesn't do what we want we will biopsy..
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Wow, sorry to hear about the progression Keetmom. I do hope the Xeloda is successful and easier to tolerate.
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so I have been on the 5mg dose of afinitor and just received my first month supply of the 10 MG dose that my onco wants me to take. I also have the aromasin but not as creeped by that as i did take it years ago wyshen first diagnosed.
But I have been having a bad back ache ever since Thursday and now I am reading the full insert of side effects.
Lordie but it says serious back pain is a sign effect. So will I get used to this or am I to expect this level of back pain forever.?
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Proudtospin, thanks for writing here. I think the back pain should go away ! I have been having it too ! Interesting that you should mention it.
Now I also have little tiny bumps all over my skin - rough skin every where. Wondering if it is the Afinitor, or .... the cancer, gack !
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amaranth a, thanks for your comment. Dang have dealt with back issues for some time but had gotten it under control so this thing freaked me out.
Today I managed it with a combination of stuff including muscle relaxer. My first follow up with my onco is next week and definitely plan on talking to her
I thought I saw that one of the side effects of these drugs is dry skin and I have been using ,ore body cream lately
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So I haven't posted on here for a few weeks because I had gotten the flu while I was on 7.5mg Afinitor and had to go off it for 3 weeks until cough went away. 2 months before this I had gotten a severe lung infection while on 10mg. I know I was one of the 10% that fall in this group of getting lung infections while taking this drug However....
I went to my ong. 2 weeks ago To get my monthly check up for blood work, tumor markers and Pet scan thought I would wait to let you know results.
My tumor marker had gone up from 77 to 98 (had been off Afinitor 3 weeks) not surpirised on markers going up. Waited until today to get my scan back...No progression in bones and still holding with no progression in orgins. My doctor have instructed for me to continue on 5 mg Afinitor seems to be better for me then 10mg or 7.5mg which caused me to develop a cough and getting sick every 6 weeks.
Afinitor is a strong drug with hard side effects but could bring positive results! I wanted to give this drug my best shot and focus on staying with it seeing my lung doctor along with my ong so they could know the best course for me to continue on this drug. My next drug will be IV :-( rather no go there yet!
Hope all my Afinitor sisters are doing well and stay positive.
Kim
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Hi,
I have been on afinitor 5mg/aromosin 3 plus years now. main side effect is fatigue and slight shortness of breath. I think the early spring in texas/pollen is making more more sob/tired. I dont use a mouth wash anymore. Had sores on the 10mg. Ive had the "acne" its really more of a rash. My onco said it wasnt acne, but to just keep it moisterised, and to not put the drying acne meds on it.
I use a sonicare tooth brush now. seems my teeth have taken a hit. diagnosed myself with jaw necrosis last year. finally got to a periodontist who confirmed my dx. its a side effect of xgeva. but it will heal. doesnt seem a big deal.will grow out in maybe a year. we decided to continue the xgeva
last pet was still NED.
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Amarantha and proudtospin, do your doctors think the back pain will abate as your body adjusts to the drug? Amarantha, the rough skin -- I have a small patch of tiny bumps on my tummy, kind of between the lowest ribs. Typical spot for a rash, I think. It feels kind of like coarse sandpaper. It appeared shortly after I started Afinitor. I assume it is from the drug.
Kim, it's interesting that your markers went up a bit after your three weeks off. What does your onc say about that? Are your markers really accurate? I can understand your wanting to stay on the drug if you can. Let's hope that 5 mg is just right for you.
Fredntan, three years on 5 mg and currently NED is great! May I ask where the mets were?
I'm on 5 mg my first month. I would kind of like to go to 7.5 before I go to 10, to see how I do; but on the other hand, my scan showed liver tumors getting bigger, so maybe I should hit them hard right now. On the other other hand, if 10 is too much and I have to take time off, that could be counterproductive. Waiting to hear from my onc as I forgot to talk about the dose increase when I last saw her.
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my bone mets where in my rt hip/spine.
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Shetland
My tumor markers I find are accurate. When I first went on Afinitor 10mg in november my makers was 98 then retested end of December went down to 77 after on 7.5mg Afinitor getting sick and then going off 3 weeks (so in totally from last blood test on tumor makers was 2 months) they had gone back up to 98
It seems that Afinitor is keeping things inline with cancer not spreading so far :-)
I would if I had the choice to do over again was to start on 5mg and work my way up to 7.5 then 10mg but my doctor wanted to hit the cancer hard however in turn it hit my lungs harder!!! Keep in mind that NOT everyone has the same side effects on Afinitor more get mouth sores then lung issues like me.
Keep us posted on what your doctor says about going higher on afaintor.
-Best
Kim
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That's interesting, Key2, how the dose seems to matter for you. Your posts helped me think about my dosage plan. May we both succeed with this drug for a very long time.
So the plan is to do my fourth week at 7.5 and then go to 10 if all is well. Does it count as an Afinitor mouth sore if you bit your lip eating a few days ago? Maybe I bit my lip because it is inflamed? I just put together a mouth care travel kit to carry around. It has little bottles of dexamethasone rinse, salt & baking soda rinse, magic mouthwash, and Biotene moisturizing rinse, plus a little cup. This goes with my little port kit that contains lidocaine-prilocaine cream, cotton swabs, pre-cut plastic wrap, and extra bandaids. Traveling medicine cabinet.
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Shetland, that is some carry kit but if it helps, then great.
I started on 5mg and when I went up to the 10, lordie could I see the difference in the way I felt. When I mentioned to my doc she said to hang in and maybe next month we would go down to 7.5.
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Oy, I was hoping that wouldn't be the case. I feel so normal right now! More normal than I have felt for a long time. Will that all change with an increased dose? We'll see. What was the difference in how you felt, proudtospin?
Yeah, I need the kit because sometimes I am out all day.
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Shetland, i felt or feel much more tired. I really could tell the day I increased. Hanging in for now but will see if I can get used to it
Feel like I need an upper!
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Good Morning
I was wondering if any of you that have been on Afinitor and experiencing back pain? has it gone away or what your doctor might have said about the back pain?
I have been on the 5mg for 3 weeks and have started to get lower back pain that comes and goes....
My pet scan came in 2 weeks ago with my bone mets stable no progression but I had read on here that some of you ladies have had some back pain so I wanted to follow up and see how you were doing.
I plan on going to my doctor next week and have read on the Afinitor web site back pain is a side effect...
Please if any of you have a update it would be appreciated.
Thanks
Kim
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ihad some lower back pain a week ago, twpo days only and took a muscle relaxer and been ok since
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thank you prondtospin!! I'm glad,your feeling better :-
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got question, was wondering if i could take the dang meds at night before bed? Plan on asking doc at next visit i take alergy meds at night,as they,make me sleepy so wondering if this would work.
That way i might have more energy during the day
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Ok, can we talk side effects? No back pain here. I have been feeling more tired since going to 10 mg. I hope it is just from not enough sleep! I loved how normal I felt those four weeks on 5 mg, especially having come off the fatigue from Ibrance and letrozole. Speaking of those lovely drugs, my skin seems even drier than when I was on them, if that is possible! My second shipment of Afinitor contained a free tube of udder cream lotion, so I guess that means dry skin is a common side effect. (While I appreciated the gesture, I tossed the tube because the lotion had parabens.) My onc says that since I have not had any lung issues by now, I am unlikely to get them, so that's something good. I bit my lip about a week ago, the same day I increased to 7.5. It has not healed, and I'm afraid the mouth sore will not go away now that I am at 10 mg. Has anyone had mouth sores heal without lowering the dose?
My onc and I are concerned with the rise in TMs on my last blood test and an increase in size of lesions on the scan, so I don't want to lower right now. We hope the TMs and scan just indicate a tumor flare as the drugs begin working. Nothing to do but wait and see. Can anyone comment on this? How many weeks before you saw improvement? Taxol worked immediately for me, and I was hoping, but not expecting, similarly fast results with Afinitor.
Proud, I take it near bedtime. I think the important thing is to take it at the same time each day.
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shetland,
good to know you tske it late day. I have bitten my lip and i slather vasaline over my lips, actually every night as my lips are often dry, i am also using more cream on legs as i saw the note about dryness
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Does anyone have frequent UTI's on this combo? Just getting over another one. so annoying!!
I saw a urologist a few years back-he said it was because all the drugs I was on changed PH of urine. I will get UTI if I get dehydrated. It sadly isnt from sex. It isnt from diabetes. I whip front to back/or dont poop.
I have found water is better if it has lime/sea salt in it. I put some squeezed strawberries in todays water. I also dont like to have a "dirty" mouth anymore. floss a lot now. been using sonicare since I found those lousy dentists and had 2 root canals.
have a mixed drink or two buys me a UTI if I dont chase it with lots of water. thats why I just have beer 1-2 now
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i have been getting utis a lot for years, can not say it better or worse since on the new med
I am trying to switch the time of daymfrom morn till evening as it was making me so tired, not sure how it will go
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Yeah I'm not alone. calling my doc tomorrow. still uncomfortable. wish they would just give me macrobid-a big supply
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fred, last couple of utis i have gone to a walk in clinic. They test my urine and give me the macrobid, faster than going to my urologist or primary
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Fredntan, have they done a culture and not just the "dip stick" test for blood in the urine? I ask because once or twice I had some urinary tract symptoms that turned out to be a false alarm. My onc explained that chemo can cause this. That said, I believe I read that Afinitor is somewhat immuno-suppressive, so infections would be more likely. Also, when they do a culture they can check which antibiotics are likely to work on the particular bacterium causing the infection. This seems important if you've had repeated infections. And anti-estrogen meds can increase urinary tract problems also. I hope you feel better soon!
I am happy to report that my mouth sore has healed.
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i just had new uti, yeap always get a dip test. Unfortunately i have had so many utis and sinus infections which all meant antibbiotics that i am resistantmto a lot of stuff including microbid
Need to discuss with onco and primary later this month
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