Afinitor/Aromasin
Comments
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Hugs and prayers for all of you dealing with SEs and progression.
Scan showed some healing of cervical spine lesion, other areas less intense uptake of FDG, MO says that means cancer is less active. So will continue current plan for now.
Lost my mojo with chemo in 2010 and never really got it back, so current meds no worse than I was, but I wonder if I might feel better overall without them, but of course, it would only be temporary until the cancer grew more. So hanging in there for now.0 -
Granna, I hope you get relief soon with your eye, it must really be pulling you down. Linda, your results sound very promising, it's so great to hear! I am feeling much better in myself today. Love Gail0 -
thank you Austrailia. I'm beginning to feel a little human. I'm going to visit my brother in Ocracoke, NC, which is a really quaint village on the outer banks of NC, and have decided I'm not going to start back on this until I get back. I think a visit with them will help me emotionally. I'm a pretty small person, and I think 10 mg is more than my body can handle. My infusion nurse told me last Friday to be my own advocate, so I'm going to request a lower dose, because obviously can't handle the 10 mg. In the 2 + years I've been treated, this has been my worst experience ever, but I know people have had good results, so I'm not ready to give up. For all of you that it's helping, kudos to all of you! Don't want to bring anybody down, so I think I'll get this under control. I've always listened to my onc, who I love, but I can't get my infusion nurse's advice out of mt head!0 -
Isn't it odd how we all have such varied side effects?
So, on October 18 I was scheduled to have my silicone urerteral stent replaced with a metal stent. It was a traumatic experience. What I know now is that the stent is too long and it is pressing into the bottom of my bladder. The dr. gave me anti spasm meds for that which made it better. During this same time my tongue started burning but it took a second seat to the terrible pain I was having down below. By the time we got the stent problem under control the weekend rolled around. Of course, Saturday morning I woke up with a mouth full of ulcers. They are on my tongue, the inside of mouth all the way back to my throat. If they were wanting my full attention the surely got it. I started rinsing with salt water, baking soda, aspirin, non alcoholic mouthwash and anything else I could think of. By Monday morning when I could get in to see my onc I had a swollen tongue and was not able to eat and barely able to drink. He gave my Niastatin (I think that's right), Magic Mouth Wash and Mugard.
For about the last 10 days I have been running a fever at night. I read from some of your posts that others have done the same thing so I wasn't worried about it. Well, Monday night I felt pretty bad but was blaming it on the mouth ulcers. I called the onc again Tuesday morning but he couldn't get me in until 2:00. By that time my fever was 102.2. They gave my some fluid and an antibiotic and took my temp again. 103.3. They are doing blood cultures, urine cultures and all of that but the antibiotics from yesterday seem to have done the trick. No fever since this morning and other than the ulcers and the fact that I can't eat I am feeling pretty good again.
Oh yeah, since I am on a roll, I will add one more thing. I had a nephrostomy tube before the metal stent. They were going to cap it off to make sure my stent would give adequate output. The night before the put the stent in, I was turning the corner into my craft room and the door knob caught the tube. I pulled it myself. NOT a good idea.
I hope A/A are working. I have lost 14 pounds in two weeks and would like to lose about 20 more but this wasn't really what I had in mind!0 -
God, Susan, you've had a terrible time! I hope things continue to improve!0 -
SAyMaoffl I know what you're going through. I had the fever, too, mouth sores, but the acne is terrible. Been off the meds now for 3 days, and I'm beginning to feel a little better. When I go back, I'm going to get my onc to reduce the dosage. Good luck everyone!0 -
Hello Granna, Gail, Susan, and others!
Granna, your infusion nurse is so right about being your own best advocate! This is a fairly new drug regime, and many MOs simply accept that 10 mg is the standard and preferred dose, but for many of us, the SEs on that dose are unbearable. I'm hardly petite at 5' 10" and 185 pounds and have generally tolerated medicines well in the past, but I was overwhelmed with SEs at the 10 mg dosage. On another discussion board I read about a woman who had such a good response at 5 mg that her onc decided to make that the generally prescribed dose for her patients.
And Susan is so right (and I've noted this myself before) that it's amazing how varied our SEs have been to this regime. I truly seem to have dodged a bullet when it comes to mouth ulcers (I do gargle regularly with a Biotene-like mouthwash, but I think I've just been lucky with this SE). But I can completely relate to the fevers, acne, weight loss, nausea, etc. Now my main complaints are down to a perpetually runny nose and occasional chills similar to what one gets right before a cold--all in all, too petty to whine about given what some of you are going through. But it took quite a bit of time, and reducing my Afinitor dose to 7.5 mg, to get me to the point where I'm handling it as well as I am today.
I wish everyone fewer SEs and excellent results with this regime.
Love and hugs, Ingrid0 -
Susan, I feel for you, what terrible side effects you are having , you would have to look at the dosage for your own sanity. Sending a big hug. Hi Inky great you are managing the side effects well . I have probably been on A/A nearly 2 months now and don't gargle any more and no further mouth ulcers which is wonderful. My skin is terribly dry which makes the bite type sores particularly itchy so I am rubbing in moo goo as much as possible which helps a lot. I think skin hydration is very important to stop the rashes. Last couple of days I have a sore area in the corner of my lips as well as nose bone pain if I press on it. No idea if these strange comings and goings relate to afinitor, but I suspect they might. Having a CT on Monday to see why my tumor markers have doubled and see onc Thursday for results, so fingers crossed all is explainable and no progression. Love Gail0 -
Gail, that's so encouraging that your SE's are under control. I hope your scan is good and you can continue this treatment. I've had 8 pills (5mg) so far with no bad SE's yet.0 -
Mary, thank you for your wishes and I hope you can continue without getting any side effects. I got ulcers within a couple if weeks but was not putting the tablet in a marshmallow either. Good luck to all of us guinea pigs lol! Love Gail0 -
I've been using the marshmallow cream. It may not help, but at least it tastes good!0 -
Mary, I have liver mets.0 -
Pcrandall, I am so sorry! Keep us updated.0 -
Oh, pcrandall, I'm so sorry to hear this as well. Do let us know what's up. If you have to change treatments, I wish you even better luck with your next treatment plan.
Love and hugs,0 -
Hi all, I'm finally checking back in after two months! I've been on A/A since Aug 10th, and after the first few weeks the pharmacist called me and said there is a drug interaction between the Afinitor and Primidone that I take for essential tremor. The Primidone actually makes the Afinitor less effective. I called my neurologist to see if there was something I could take instead of the Primidone, and there isn't. So, my oncologist checked with the drug company, and they recommended we double the Afinitor dose to 20 mg.! I was really apprehensive about that dose, but decided to give it a try. I ended up with nausea and vomitting and severe headaches. Finally I decided (on my own) to take one 10 mg. one day and two the next. So I guess that means I am taking 15 mg. I still have terrible headaches, nothing takes them away, even migraine meds. I spend 5-6 days a week on my couch with an ice pack on my head. My onc suggested I take a break from the meds, but I am kind of afraid to. My 29.27 went from 71 to 53, then back up to 72. I'm not sure if it went down when I was on 20 mg. then back up when I switched to 15? I welcome any thoughts from any of you!0 -
LindaTwo, that just doesn't sound like any way to live. I think I'd have to opt for quality of life and cut back on the Afinitor or try a different drug. I don't think chemo would be as bad as what you're going through. I hope things get better for you.0 -
I had bad headaches when I started the Afinitor. They eventually went away. AFTER all that my doctor lowered my dosage to 5 mg.0 -
Thank you Mary. I actually did not want to do chemo again.......didn't want to lose my hair or live with the exhaustion. At least with Afinitor when I do have a good day I can get out and do things. With chemo I was so exhausted I could barely make it from the parking lot into Walmart, then I couldn't make it any further than the vegetable section! I am wondering if it is the Aromasin ( I notice it can cause headaches) and if I can switch to a different AI. I hope you have good results with A/A, and wish you NO SE's!
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Anyone having trouble with constipation on Afinitor or combination? If so, any recomendations for help?0 -
I had just the opposite problem--the big "D" when I first started taking A/A. Not sure if this will help in your situation, but on the advice of an oncology nutritionist I started taking a prebiotic/probiotic supplement, and I have to say that I'm now as regular as a clock and all my gastro-intestinal issues have resolved. I've had constipation in the past from other treatments, and I usually find Colace to be a gentle and effective laxative.
Good luck!0 -
Onc said today to stop taking the Afinitor. My creatinine levels are up as are my markers. I'm going to have a kidney US and we have to get my creatinine down to better leves since we can't scan until they are.
My potassium and iron are also low, and I suspect it's also from the Afinitor. Sigh. I get a tx that's been fairly gentle to me in terms of how I feel and it silently wreaks havoc in my body.
Leah0 -
Oh, Leah, I'm so sorry. Do you know what your next treatment will be? Are the kidney problems new?0 -
Leah, so sorry to hear this. I really get it that feeling good is a nice change, just too sad the Afinitor isn't doing its job.... Let us know what your next treatment plan will be, and check back in with us from time to time. I find that as treatment plans change, or even consideration of different treatments is suggested, I check out the threads with info, and find names of people I have met over the past 3 years here, scattered all around. We seem to bump into each other, then go off onto another path and lose track of them for a bit, then meet up again. Funny thing the way these boards introduce us, help us support each other, then we move on for a bit, and our paths cross again. I hope your kidney function improves rapidly off the Afinitor, and hope the next meds are kind to you. (((((Leah)))))0 -
Leah, I'm so sorry to hear this as well. Is it certain that you will be going off Afinitor for good? I know that Afinitor causes creatinine levels to rise in more than 30 percent of patients, and sometimes markers can go up for non-cancer-related reasons. That Afinitor certainly does wreak all manner of havoc with our body chemistry. But from what I hear, everything tends to normalize fairly rapidly once you are off it. I very much hope your kidney scan bears good news and that you tolerate well and have fantastic luck with whatever meds you are put on afterwards.
Hugs,0 -
I take one senna tablet every night before bed for constipation.
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Well I'm off Afinitor. Been off for a week, and my symptoms don't seem to ease much. I'm on an antibiotic, a prednisone pack, swish and swallow. I've never had acne like this with a swollen eye, and the fatigue is incredible. I'm going to be scheduled for another bone scan as the hip pain is bad when I get up in the morning. I don't know yet if I'm off for good, but definitely I feel the 10 mg is too much for my body. Guess the bone scan will tell the story. Good luck to everyone on this drug.0 -
Granna, it sure sounds like 10 mg is too much for you. Were you ever on 5? If so, did you have much in the way of SE's? I'm on 5 and doing pretty well so far--just itchy. It's only been 12 days, though.0 -
So this morning I get a phone call from my oncologist that my electrolytes were dangerously low and that I needed to get there ASAP for an emergency potassium infusion that took 4 hours. Answers a lot of questions I had with the extreme fatigue and wobbly legs. Tonight I feel better than I've felt in weeks. Still have to have potassium level checked in a couple of days. I guess my onc will decide what to do after my next bone scan, to be scheduled shortly. Afinitor 10 mg definitely does not like me! If my scan looks good maybe we'll try 5 mg again, but the acne still is coming, and I've been off for 8 days. My onc was on top of this, and I feel blessed for her.0 -
Hi, checking back in. I survived the chemo embo into my 2 liver tumors. I was suppose to have the 2nd process which was to insert a needle into the liver and then freeze the tumors. Insurance denied the procedure because my cancer didn't come from the colon or brain to the liver! My dr. is on the 3rd appeal. I don't understand how this can happen. I may have to get a lawyer to go to court or pay out of pocket for the procedure. Oh, I could go get cancer in my colon or brain. I am trying to stay hopeful.0 -
tfedders, I'm glad the first procedure went well. Unbelievable that your ins co won't let you have the second one. Has your doctor had this happen with anybody else? I'd get an attorney involved if this next appeal fails. Let us know. It wouldn't even help to threaten the ins co with a boycott by cancer patients. They'd be thrilled to lose us!0
