Afinitor/Aromasin
Comments
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Mary, I am in Australia and my onc just said she was going to a apply on my behalf for compassionate grounds for afinitor . The company kindly agreed and I pay nothing, but not sure if it's because I am on disability pension now or they do it for everyone whose onc applies. She did say to me she has never been knocked back yet. I feel for you having to come up with that amount each month. Things have settled down for me, no mouth ulcers since putting them in a marshmallow , coincidence? Who knows but I'm happy! Got moo goo creame and daily tablet go stop itching so help this works as made my back bleed from scratching this morning. No news of when doing ct yet to see why Tumor markers have doubled, but feel like I am not having any symptoms of anything other than aches and fatigue. Linda, I'm the same even though I know my markers were elevated for diabetes. Rosie, I would have thought being a diabetic was as serious as cancer, but know nothing about it, so shouldn't really comment. Good luck Mary and hope the scan shows nothing serious . Love Gail0 -
Is it ok to have a glass of wine or beer while you're on Aromasin/Afinitor?0 -
I started the A/A combo 24 days ago. I noticed no noticeable side effects. I have noticed my sciatic nerve feels pinched and I'm walking like an old lady. I have been taking muscle relaxers at night. Also, the neuropathy in my fingers and arms, especially at night is becoming unbearable. I thought this was from the 28 chemo treatments, but those were done on Sept 18th and it seems to be getting worse, not better. Yesterday I noticed my throat was a little soar. After reading through here, I believe these are side effects of the A/A. I do consider myself lucky. One girl in my support group started this combo about the same time and ended up in the hospital for 12 days with a blocked colon. This is not listed on the side effects but she has found other woman that have had a similar experience. Is this a chemo drug? I was told it was hormone therapy. I may try the marshmallow thing. Now that my throat is soar I'm a little worried about the mouth soars...0 -
Karen, the neuropathy can be from the chemo due to a phenomenon called coasting. The nerves are injured by the chemo, then undergo a dying-back process that takes weeks to months for symptoms to appear. I have asked about the afinitor because my neuropathy got lots worse about 2 months after I started it - finished chemo in Dec 2010, neuropathy started with first dose, got a little better, then horrible. Slowly improved to just very bothersome until afinitor. But my medical toxicologist doesn't think it is the culprit. Hope you get better soon.0 -
A/A day 31 today, but with two mouth sores which refuse to go away after 2 weeks, my MO told me to stop Afinitor. Hope that magic mouth wash does the trick and to be back on the wagon soon.0 -
Mary, I have drank a glass or two of wine every now and then because my Onco doctor told me it would be fine however she told me to do so a couple hours before or after I take the meds. Now I have a question has anyone else have a rapid heartbeat or maybe its just my nerves ??? caused by the meds???0 -
Hansaim,
My mouth sores took 3 weeks to go away. It was not fun. I'm doing the marshmallow thing now & a friend of mine told me to get a dental mouthwash and I can not remember the name but it's supposed to get rid of the baceteria that causes the mouth sores. I also heard gargling with baking soda & water helps a lot.
Terri0 -
Hi ladies,
I really feel for all that you are going through. It seems frustrating that one treatment/meds leads to some other ailment/side effect. I am a dental hygienist and appreciate all that you share on this forum so that I may have a better understanding of what my patients are going through. I specialize in caring for home bound patients, who generally have medical problems. I was curious about the marshmallow trick? Are you putting your meds in marshmallows? I was also hoping to get more information on if any medical or dental professionals gave you any insight as to what is causing the mouth and throat sores and possible solutions. I saw that some mentioned a mouthwash. Do you recall the name? Are you experiencing dry mouth? High decay rate? Periodontal disease?
On-line search for side effects of Afinitor: Pain or sores in the mouth and throat may occur. Brush your teeth carefully/gently, avoid using mouthwash that contains alcohol or peroxide, and rinse your mouth frequently with cool water mixed with baking soda or salt. It may also be best to eat soft, moist foods that aren't spicy.
Here is a link about "Magic Mouthwash": http://www.mayoclinic.com/health/magic-mouthwash/AN02024. Maybe you can share this with your Dr. and get a Rx specifically for your needs. Hope this helps.0 -
Yes Leona, poking the tablet in a marshmallow or some are using gel tabs and washing down with a glass of water. I nearly gag sometimes and get in a mess making sure the tablet is covered in marshmallow, but since I have been doing it I have no mouth ulcers. I eat normally and don't even need o gargle with biotene anymore, but still use a soft toothbrush with herbal toothpaste which doesn't have some ingredient the normal toothpaste has that's bad for us. If I could just stop itching, it would be easy to put up with. Perhaps I got used to the meds and that's why the ulcers stopped so I'm hoping that's the case with the rashes. Deb, no I haven't had your symptoms, but we are all different to the side effects I think. I will know more when I have my ct and blood test in the next couple of weeks I guess.0 -
Afinitor mostly causes mouth sores by its systemic effect, but has a very small local irritation effect. Keeping mouth very clean helps; no proof that the marshmallow or gelatin capsules work because the sores are more likely to be from the drug circulating and harming developing epithelial cells found in the mouth and GI system. They are kind of like the rash - affects some people a lot, others not at all, and it changes in a single person over time, sometimes getting better, sometimes getting worse. I don't think there is really a "for sure we know what this is caused by" so doing whatever works for you is probably best.0 -
Thank you Linda-n3, good to know it's not the Afinitor causing the neuropathy. I was hoping we stopped the chemo soon enough so I wouldn't develop the neuropathy, but I never heard of coasting. I'm type 1 diabetic as well so between the cancer and the diabetes I'm never quite sure how I'm supposed to feel, but all things considered, I feel pretty darn good! Hope I don't get the mouth soars. That sounds horrible...0 -
Anyone having back pain and sciatica? When I get up in the morning, it runs right down my leg, and takes about 10 minutes to settle down. Also my mouth is so dry, I feel like I can't drink enough. My blood sugar level was good, so I don't think I'm getting diabetic. My last bone scan showed improvement or stable, so I guess it's worth it, but I am certainly having a ton of side effects, including mouth sores and acne.0 -
Granna, I don't get back pain but boy can I relate to the dry mouth. I'm constantly drinking and I've started to keep a water bottle by my bed at night since I'm constantly waking up to drink. I look on this thirst as a good warning signal since one of the SEs listed for Afinitor is mild dehydration.
Leah0 -
Leah, I'm glad you don't get the back pain! Yeah, the thirst is incredible!0 -
I just took my first Afinitor. I covered it with marshmallow cream and swallowed it with a big glass of water. In a few more minutes I'm going to brush my teeth and rinse with baking soda in water. After reading the last 3 posts, I put a bottle of water by my bed. Have I forgotten anything?0 -
Good luck Mary! I hope you sail through.0 -
Mary, have you got a children's soft toothbrush and toothpaste without sodium laurate sulfate which irritates the mouth, you need a toothpaste like herbal without it. Good luck, I hope it works beautifully for you with minimal side effects. Love Gail0 -
thanks, Granna and Gail. I need to get the herbal toothpaste and child's soft toothbrush. Unfortunately, I'm prone to mouth sores, so I'll need to be extra careful. I had my CT scan today, so I may find out tomorrow which new organ is involved.0 -
Can someone please help me? My PET scan in August showed progression in the lymph nodes after being on Faslodex for 3 months. My oncologist changed me over to A/A and after 5 weeks I had pain on the left side of my neck. It felt like there was a bowling ball in my neck. We dashed to the doctor and he was somewhat certain that the A/A wasn't working and ordered another PET. Surprisingly, it showed that most of the lymph nodes have shrunk but there are some small new ones in the left arm pit. The bone lesions are stable. My doctor wants to continue the A/A and do another scan end of December. Since my visit on Tuesday, I am having pain on and off in my neck and left arm pit. I have also noticed some redness on the left side upper chest and can feel a small lump there (PET also picked up activity there too). There is a swollen lymph node in my right groin too (One of the bone lesions is in the right pelvis).
Is it possible that the cancer is being killed off and producing pain and maybe scar tissue? I want to give the A/A more time but I'm confused. We thought it wasn't working but the PET shows differently.
Has anyone had lymph node involvement? What did you experience?0 -
gosh, it must be frightening for you, but certainly sounds like positive healing. Hopefully you'll hear from the longer term ladies soon to reassure you. I would be very careful you don't have cellulitis with the red area, that can be very serious and I had it in my breast 4 years after my lumpectomy. So if you develop any strange itching or fever , get yourself off to emergency. Hoping for the wonderful result of healing. Love Gail0 -
my onc prescribed MUGARD which is a great mouth rinse (expensive without insurance) ..but good0 -
Oh, no, how much does Mugard cost?0 -
Just wanted to pass on some info I found out for mouth sores. I spoke with a local pharmacist who said prescription Paridex with .12% chlorexidene will quickly eliminate bacterial infections & mouth sores. You need to ask your doctor for a prescription. Plan on asking mine. The pharmacist said the sores should go away within a day or 2, which is so much better than the 3 weeks I had mine.
Terri0 -
Great news about the mouthwash! I don't have mouth sores yet, but it's only been 2 days. I haven't had ant side effects yet, but know they may come. Right now I'm on 5 mg pills, but I think that will be increased next month or sooner.0 -
OK, Linda, here is a big YELL! Close your eyes, and picture pieces of candy with ugly Halloween masks on each. Now, visualize pieces of fruits and veggies with happy faces. They are running around playing sports- maybe tennis or soccer. You do NOT want candy; you do desire those fruits and vegetables.
Take care- all of you. I have been on the A/A combo since March of 2012. Tumor markers have been in the normal range since October, 2012. My last scan in April, 2013, showed no evidence of disease. I continue to have many of the side effects; the worst is fatigue. All in all, life is good. I work part time teaching in middle school, and the kids are awesome. I got to take my oldest grandchild to college in August and move her into the dorm. My youngest grandchild will turn 1 in January, and I will be there to celebrate. My other three grandkids are doing well in school, and I love watching them grow up. My hubby is my rock, and I adore him. These last four years since my diagnosis and treatment have been an effort in faith, but I try to focus on the positives in my life. I wish the best for all of us.0 -
pcrandall, thank you for posting! I really appreciate it when ladies who are doing great take the time to post encouraging words. I'll be starting Afinitor soon and hearing your A/A response cheers me a great deal.0 -
Pcrandall, thank you do much for the wonderful, positive post! I just started on A/A because of progression. I've been feeling really depressed and hopeless, but knowing that you've done so well really helps. Can I ask where your mets are?0 -
Ronda, I've seen you many times on other threads, so it almost seems like I know you. It looks like we're starting this new regimen at the same time. I'll be interested to see how you do. I've only had 2 Afinitor pills so far (4 of Aromasin) and so far, I'm fine. I'm being really diligent about keeping my mouth clean. Best of luck to you.0 -
Thank you MaryLW, I feel the same way. : ) Good luck to you, too.
I am quite interested in the news that the mouth sores seem to be systemic, and yet some people report great relief with capsules and marshmallow.
I am going to be travelling in the next couple of weeks, and won't be at home to get my mail, and my prescription is supposed to be mailed to me. I am anxious to start the Afinitor because my next scan is Dec. 17.0 -
I've been putting my Afinitor inside a little glob of marshmallow cream. I don't know if it will help, but it can't hurt, and at least it tastes good! My Afinitor comes FedEx. It costs me over $900 for 28 pills, but...they don't charge shipping! I thought that was very funny, in a black humor sort of way, when I read about the free shipping.0
