Afinitor/Aromasin
Comments
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My gp rang me tonight to say my blood test for blood sugar is elevated to pre diabetes! What the! Wants me to pick up the results to show my onc when I see her, so not sure what this means? Love Gail
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Hi Gail,
I know that Afinitor can raise blood sugar levels. That's one of the few SE's I have yet to experience. The good news is that metformin, an oral medication for dealing with this, may also have anti-cancer benefits, particularly when used in conjunction with Afinitor. For instance, check this out:
http://www.ncbi.nlm.nih.gov/pubmed/22593441
Good luck!0 -
Australia,
I did hear about this as well. I'm on my first month on Afinitor. I'm not sure if following a modified carb program eliminating pasta, rice, bread will help as it keeps blood sugar levels in check. I've been following this for weight loss and it's worked well and hoping it will also work with this new medication in keeping my blood sugar levels stable.
Terri
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Thanks for the info Inky, will ask my onc about it. Terri, oh no, I may actually really have to eat well!! Might be just the kick i need to get this weight off. I have only been taking it less than 4 weeks myself. Regards. Gail
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I've been taking it with a veg cap. I think it is systmeic and has nothing to do with the coating. I just went back on even though one gum is still tender. Will throw some meds on it tomorrow if it gets too much. I think for some, the mouth is so sensitive that any agrevtion will trigger a sore. So keep your mouth clean and no scrapes etc are the key. For others they are lucky and don't seem to have any issues. I just hope it is worth it for me. I'm not wimpy but these sores suck.
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well after months on A/A and becoming insulin dependant from it .... I had my tumor markers done (always have been spot on ) and they went up 17 points... the nurse said it was insignificant ... but now i have to wait until the 18th for a PET scan and onc appt on the 22
UGH hoping atleast itis stable
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I've had sore throat for days. My GP said that it looks like an ulcer. I've been using baking soda rinse and do not have any sores in my mouth. I bought a spray (phenol) but I can't spray it down the throat. Any tips on how to deal with this? Thank you.
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Hansaim,
How about gargling with cloraseptic spray for sore throats. I spray some of this on my mouth sores to numb for awhile & have used it all the time for sore throats.
Terri0 -
I have been using the marshmallow trick (very messy to get the tablet covered!) and thought mouth ulcers were healing but still there but smaller and now a new one. sore throat also. I am already sick of feeling like this and wondering if this will be the norm for me on this drug? It better be working because it is spoiling whatever time I have left. Rosie, I hope you get wonderful results and sending you a big hug. Love Gail0 -
Australia, I'm having a tough time too. Got acne all over my scalp, on right arm and mouth sores. Also my rheumatologist thinks I have gout in my right foot and ankle (been swollen for about 6 weeks), and today my right hand is swelling. I can barely see my knuckles. My tumor markers have dropped 40 points, and I had a bone scan today. I sure hope it shows improvement, but this is definitely the hardest treatment I've had. I see my onc on Wednesday, so we'll see. Tough stuff. I don't mean to bring anybody else down. Apparently having thyroid disease and RA doesn't help with this treatment. Good luck to everyone on it. I'm not ready to give up yet.0 -
I'm so sorry to see so many having a hard time with the A/A combo. I've havent had any side effects other then a little acne and/or a eash. its been Very Tolerable. I just hope it's working. I started 8/20 and I don't think I'm scheduled to get scanned until later in the month.0 -
Generally I have been doing fairly well on afinitor/letrozole. But the hair and nails and skin issues are driving me crazy. Acne sores around my mouth. Sore throat. Hair falling out. No cuticles, my nails are tin and fragile, and I have ripped the nails back to the quick on one hand so that they snag on all my LE garments and other clothes. Bandages on them now. One hand with glove for LE, one hand with bandages for lousy nails, both hands hurting from chemo-induced neuropathy. This just sucks.
Thanks for letting me vent. BTW, I started biotin about a week ago. Anyone tried it? How long does it take to see any improvements????0 -
I've had an easy time with the A/A combo. Only 2 mouth sores in the 6 months I've been on it, both taken care of with Oracort paste. Travelling rash that's mildly annoying sometimes. Loss of appetite and major taste changes. Fortunately the taste changes have greatly improved (probably about 90% normal now) since I started taking zinc - yes, it seems to be working. The biggie is the fatigue, though I've figured out that if any tx I'm on lists "fatigue" as a possible SE my body says, "Oh, yes, I'll have that".
Unfortunately my markers are still going up up up even though my scans were stable. I'm not talking little bits, I'm talking over 65 points in a month. We did markers again Thurs, results of the blood test will be in Sunday, and if they're still up it's hi ho hi ho it's off to CT I go. I'll let you know.
Leah0 -
I think I need a good slap around for complaining! Gosh we are either no side effects (wonderful) or really mind bending ones that do your head in. Can I just have another whine? Lol I have such sore joints and foot it's hard to walk so therefore the fatigue is getting pretty bad. I lay in bed till late am, shower, sit down, lunch/ wash up, sit down and so the day goes. So glad though that I don't have the acne! Some of you girls are doing it so tough and still keep going. I went shopping and to the movies yesterday, so at least did something. I have another stage 4 lady I met on another forum coming to stay for a couple of days next week which I am really excited about. Love to all Gail
Ps Linda, you poor thing have copped the lot! Dreadful side effects. Sending you a big hug.0 -
I have been on afinitor for about 3 weeks now. I have gotten my first two mouth sores. They hurt so bad!! I'm on the 10 mg. My oncologist called me in some magic mouthwash and I don't have any insurance now so was gnna be $70!! Definitely can't afford that! Does anyone else knw what to try that works. I been doing the baking soda and warm water and I have the biotene mouthwash. Neither seem to be helping,0 -
Rlw, I think adding salt to the bi carb helps more, but I think the main thing is being more pro active as when there is not as much pain you can easily slacken off. I really don't think anything helps that I have been given. I started off with the manuka honey which was useless, then started the salt and bi carb, changed my toothpaste to the herbal brand and used sm33 directly on sores and was clearing and next second I get another sore! It pulls you down so much. I went to my gp and said about the magic mouthwash and she directs me to a gel with the ingredients you can buy over the counter at the chemist and I have nearly used the tube and the ulcers are the same. I am using the tablet in the marshmallow and has made no difference, I think the pharmacist may be right when she says its in the bloodstream. I hope we get some answers soon. Regards, Gail0 -
Rlw,
I know how you feel. I also had 2 very painful mouth sores that lasted 3 weeks, I may be getting another one. I have the magic mouthwash & it only works for about 15 min. I also tried a over the counter canker sore gel that worked a little longer. I also sprayed cloraseptic spray (over the counter sore throat spray) & that works longer than the magic mouthwash.
I read that Oracort paste may work -I have not looked that one up yet.
Terri0 -
I forgot, I had been gargling with biotene mouth wash and had slackened off and used it last night and throat feels much better today already. I am going to go back over the old affinitor thread as I am wondering how the long termers went and if it improved with time or not. Love Gail0 -
I forgot, I had been gargling with biotene mouth wash and had slackened off and used it last night and throat feels much better today already. I am going to go back over the old affinitor thread as I am wondering how the long termers went and if it improved with time or not. Love Gail0 -
Thank you girls! I haven't been on this sight but a couple weeks and it is so nice to find other people that understand what we are dealing with. Could someone please tell me what you mean when your talking about your "markers" I have never been told anything about markers?? All my mets have just been in my bones for over a year...... Now showing places on my lungs. So is that where I will have markers?? Sorry to sound like a dummy. I guess things aren't explained to me good enough and I dnt knw the right things to ask.0 -
Rlw1018, markers refer to serum tumor markers. In breast cancer, some of the more commonly used ones are CEA, CA27.29, and CTC. These markers can give doctors a sense of whether treatment is working, but they don't always give reliable information. For some patients, they tend to be very reliable, whereas for others, they don't seem to track the disease well at all. You can read more about them here:
http://www.breastcancer.org/symptoms/testing/types/blood_marker
Linda, I'm with you on the thin and fragile nails, and I've been taking both biotin and B12 as supplements to try to help with this. Maybe these supplements are somewhat successful, because my fingernails are still okay. But my toenails break and tear off much too easily these days.
My other big problem with A/A is an increased propensity for infections. I've been trying to do everything I can to boost my immune system, but so far I haven't quite met with success on that front. For instance, just the weekend I came down with a stye in my eye. I think the fact that my favorite exercise is swimming in an indoor pool where lots of children swim as well may be contributing to my tendency to catch these infections. But I refuse to give up swimming because it makes me feel healthy and sane. I was thrilled when my health club switched from chlorine to a more eco-friendly saline solution to disinfect the pool, but maybe that makes the pool all the more prone to spreading infections. Oh, well. I still plan to head there today. I'll just try to keep my goggles on.0 -
Ingrid, I think I need to get back to the pool as it does make you feel so good. I love the deep water running, the Only thing is it's done in an Olympic size pool in the sun with no shade, but I suppose I could wear a t shirt and hat(good look) it was 36 dg here yesterday and it's still spring! I have some multi vitamins, I think I will take them to help the immune system. Now have been on afinitor 30 days, 10mg. See my onc next week and off tomorrow for monthly Zometa infusion. No change to mouth ulcers. Have a sore elbow for this period of time, not sure if it is a bone met or some other stupid issue just to complicate things! Gotta maintain the sense of humor to keep me going. Love Gail0 -
Ingrid, I think I need to get back to the pool as it does make you feel so good. I love the deep water running, the Only thing is it's done in an Olympic size pool in the sun with no shade, but I suppose I could wear a t shirt and hat(good look) it was 36 dg here yesterday and it's still spring! I have some multi vitamins, I think I will take them to help the immune system. Now have been on afinitor 30 days, 10mg. See my onc next week and off tomorrow for monthly Zometa infusion. No change to mouth ulcers. Have a sore elbow for this period of time, not sure if it is a bone met or some other stupid issue just to complicate things! Gotta maintain the sense of humor to keep me going. Love Gail0 -
I started A/A last week. I am having terrible stomach pains but I am not sure if it's the chemo or constipation. Anyone else having stomach pains?0 -
hi ladies. Does anyone know if there is an Afinitor-only thread? I think I am going to start one as I will be going on the med soon. A lot of the info here is useful to me but some of it isn't as it seems some ladies are trying to figure out whether it's Afinitor or Aromasin causing SEs which doesn't relate to me.
I tried doing a topic search but it produced 3000 results and most were from this discussion. I was hoping maybe one of you might have a separate Afinitor thread, if one exists, as a favorite topic, and you could link me to it.
As it is, I'll start a thread for Afinitor takers who aren't on Aromasin. Hopefully it will complement this topic.0 -
Hi Everyone,
I haven't been on the site for a while because I've been busy with "back to school" things for my daughter, working, and trying to enjoy life! I am still on A/A after nearly 10 months (Started 12/15/12) but it has been a rocky road. I am pleased to report that my PET in August showed no progression of my mets, improvement in the liver tumor, and no new metastatic spots. YAY!
I would like to report to everyone asking questions, that in the 10 months on A/A I have had most of the side effects mentioned and I am currently now diabetic due to this. I have also lost weight. Scary. I was overweight to begin with (not obese) and my onc has always said not to lose weight. I have lost 10 kg (22 lbs) in 10 months, and 8 lbs of that (about 3.5 kg) was this month alone. I had a long talk with my onc today and I will probably switch to something different (Xeloda or Faslodex?). If any of you have been on either or both of those, I am interested in hearing those stories because from what I have read, Xeloda scares me.
For those of you asking about S/E, here is my story of the past 10 months:
Started 10 mg Afinitor + Aromasin on 12/15/12. After 8 days(yes, right before Christmas) I developed 2 horrible mouth sores which went away after approximately 3 weeks. Liver functions were elevated, but only slightly. Developed daily nausea (which I still have) and diarrhea off and on. Severe fatigue off and on up til now, no appetite at times, itching skin in Jan-March, thin soft nails. I also developed HORRIBLE acne (think 13-year old boy in puberty). The acne was all over my face, scalp, neck (both sides), back, torso, groin and arms.
In February I started to rapidly lose my hair (ended up losing about 1/2 of the thickness, no bald patches). I had a liver MRI that showed my liver tumor had shrunk by about 25%, however my liver functions were so awful, and my acne and itching was so severe, my onc took me off everything for 6 weeks and then restarted me on 5 mg dose in May (this year).
I stayed on 5 mg Afinitor until July when I noticed the tumor on my sternum getting larger. I was on vacation at the time. In August I went to the onc, and my tumor marker had doubled. He had me re-start my 10 mg dose. My PET scan on 8/27 showed no progression and improvement in the size/activity of my liver tumor, however my fasting blood sugar was 142. Since being on 10 mg again since August, my liver functions have gone haywire, and my blood sugar today was 287. However you look at it, my bone pain is GONE and I feel great. I have only had 1 other mouth sore (about 2 weeks ago) and it is nearly gone.
After talking to my onc, I will probably switch medications. He said, you cant shrink the cancer and die from liver failure, or diabetic complications. Yes, he is right, but it is disheartening to know that the tumors have improved so much, but the S/E are too dangerous in his opinion to stay on it. SIGH.....
This is just my story and I hope it helps those of you on A/A, thinking about A/A, or wondering about S/E. My life has been wonderful and (mostly) pain-free, so it isn't bad at all. I would say just beware and make sure you discuss the S/E with your onc. My other recommendation would be not to let the onc talk you into stopping it altogether too soon. I mean really, just go by your quality of life, unless you are in danger, like I seem to be now. Ironic, since I feel the best I have in months.
Liz0 -
Thanks Liz for your update. So many of us newbies on Afinitor are wondering what to expect.
Terri0 -
Well I'm sitting here feeling like a big crybaby!!! These mouth sores are horrible! My husband just left for work and kissed me bye, he wasn't thinking about this big huge ulcer I have on the inside of my lip, I jumped back in agony. Just done my baking soda and warm water regimen and that brought me to tears. I'm glad for those of you that are doing well and not experiencing these terrible side effects. I have been on 10 mg for about a month now. Last two days ( just at night) I have ran a fever. Do not know if its related because for some reason I've ran fevers occasionally b4 getting on this medication. I do go see my oncologist Tomo so I'm sure they will check me for infection. Sorry to scare anyone just starting out. You could be one of the lucky ones and not get the SE. I hate it when I start feeling sorry for myself. It just gets so hard not to sometimes. Anyway thanks for letting me vent!0 -
Got a question for the group. Diabetes is a fairly common side effect of Afinitor. I've been on it for several months and have now developed diabetes. I'm wondering if anyone who developed diabetes had their diabetes improve after quitting the Afinitor. I was pre-diabetic before starting the Afinitor, but the increase in my A1c was really major after starting the Afinitor, and my onc believes it is the Afinitor that pushed me over the edge. TIA.0 -
Liz.....Just read your story after venting my sob story! Your message was very inspiring and you sound like a true fighter. I hope and pray that your tumors will continue to improve with the new medications. I am on zoladex for some reason I thought I was also on falsodex and xgeva. Started out on zometa. I really haven't had any bad SE from either but then again I've been on it since the beginning which was August 2012. I had alot of bone pain for about two months before getting on the medication. Had fever, no appetite lost about 15 lbs. Even had to be hospitalized at one point for pain. After getting on medication it was like I was a new person. My family told me later that in the beginning which was May 2012 that they didn't see me making it until Christmas. After starting treatments I went months w/o any major pain, scans showed improvement, all was good. I haven't had any of that real, real, bad pain until about a week on the afinitor. I have had pain but was usually controllable with prescription ibuprofen, heating pad and when that didn't work pain meds. I also put back on the 15 lbs plus some. With these mouth sores food is definitely not as satisfying when it hurts so bad to eat it. Maybe that will be at least one positive on it!!
The only bad thing with the zoladex is the nail like needle they have to use. At first they would use the freeze spray on me and that helped tremendously!! Now they are only allowed to use the numbing cream which if ever on it you will definitely want!! They prescribed it for me and u apply it an hour b4 they give it to you. They give it in the stomach. It also depends on who is giving it to you. I have had some hurt me worse than others. At the cancer center I go to there aren't many ppl that are on it and one of the girls actually told me they drew or played sherades, whatever they did, to see who was gonna have to give it to me!! It dispenses a little seed, so that's why the needle is bigger. The more belly fat the better lol!
My last scan that was done about 6 weeks ago showed some worsening with bone mets and nodules on my lungs. He kept me on the falsodex and xgeva once a month and took me off my arimedex , added both A/A drugs. Says he wants to take the less aggressive approach first?? Then starts me on the highest dose of this! Told me they don't have alot of ppl on this so didn't know much of what to expect as far as the SE. Did tell me the mouth ulcers and fatigue were some of the more common ones.
Wishing you the best!
Rhonda0
