Afinitor/Aromasin
Comments
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Rlw, does the Center of Hope have intervention radiologists? I had chemo embo done on my liver. They insert a catheter through my thigh up to the liver. Then they cut the blood supply to the tumors (I had 2) and inject chemo beads into the tumors. Procedure can be painful but results are suppose to be very positive. I am still waiting on the 2nd procedure, freezing the tumors to kill them. Insurance is denying the procedure. My doctor is on the 5th appeal. Good luck. Terry0 -
has anybody else had nosebleeds after taking this drug combo? I just took my 29th pill. I have a lot of itching, and now I'm getting a swollen eyelid. My belly is wonky and I just had a nosebleed. I'm on 5mg. The MO said he'd like me to be on 10, but not until/unless the SE's get better. He said after A/A, there's just chemo.
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MaryLW, this will be my last post on this thread. I have been off A/A since Oct. 28, and it is just now getting out of my system. I never had nosebleeds, but I had acne on steroids, and my right eye was almost swollen shut, with acne along my brow line. I have scars like craters. I also have a blood clot in my left leg. I am on to Navelbine, starting December 6. I know there are great results on this drug for tons of people, and I wish them the best. Just didn't work for me. I think I had every side effect there is except diabetes. Everyone is different, and some things work for some folks and not for others.
Good luck to all you A/A ladies.
Granna0 -
Thanks, Granna. I'll miss you on this thread. I hope Navelbine treats you better.0 -
Mary,
I been on Affinitor for a few months and I get nosebleeds every day. When I first started in May I had really massive nose bleeds. I now just have a drippy nose( I am also on Tykerb, Herceptin, Xeloda and Zometa with affinitor; I think Herceptin causes a drippy nose) but whenever I use the tissue, it is red with blood. I was on 5 mg for a couple of months but my tumor markers went up so now I am on 10 mg. I have had other SE also and get mouth sores.
Granna,
Good luck on Navelbine. I hope it is gentle and works for a long time.0 -
Mary and Formygirls,
I take both A/A and herceptin, and my nose is in misery. Just this morning I had some of my bloodiest discharge yet. The bloody discharge only occurs when I blow my nose in the morning, as it seems to build up while I'm asleep. But then I proceed to have a runny nose for the rest of the day. I now attribute the former mostly to afinitor and the latter to herceptin. I was hoping that some of my SEs would go away over time, but this one certainly hasn't.
Granna,
I'm so sorry you had such a miserable time on A/A. I wish you a much easier, longer, and more successful run with navelbine.
Hugs to all,0 -
Granna, will miss you here, and hope Navelbine gives you good results with few SEs.
Mary, I had nosebleeds - it was like all of a sudden I would have a drippy nose but it was blood. It would stop pretty quickly with a little pressure, not like other nosebleeds I have had. I wonder if it is more of the drippy nose PLUS a LITTLE blood, which makes it look like a LOT of blood, because that drippy nose is certainly a royal pain.
Have been on the AI/Afinitor combo for about 9 or 10 months. Fingernails are a mess, thin and tear like paper, feels like they have been hit with a hammer throbbing. Half of them have lifted at the ends and sides, get caught on clothes, LE garments, etc. Cannot turn pages of a book without catching them! Not sure if the pain is part of the CIPN and it has been exacerbated by current meds, or if it is just from the nail damage from the Afinitor. MO said this is a "rare" problem. Of course. :-/
Have been keeping a plastic hairbrush with the soft knobs at the end of the bristles, widely spaced, to give my scalp a good rubbing when it itches, and it also works for my back and neck itching. Can't use my fingers to scratch because of nails and pain, and am being careful to not rub too hard to injure skin. Where there is a will, there is a way!0 -
Linda, I'm trying really hard not to scratch, but sometimes I can't help it. I have some open sores, which I'm treating with Neosporin. My husband made me a backscratcher! He likes to make things out of wood. My face is starting to get sore, red places that don't itch. One eyelid is red and swollen. I saw the MO yesterday, and he said again that when this combo quits working, the only thing left is chemo. So...things are definitely not going to get better.0 -
(((((Mary))))) I so wish you were having an easier time!
When this quits working or I get fed up with SEs, I am pretty near the end of my options as well, unless Pfizer gets its BZA approved. They got it approved IN COMBINATION with estrogen to relieve hot flashes and osteoporosis, but not available as a single agent, so no way to even get it "off label" for those of us with mbc. It has better results in Europe than A/A.0 -
I'm also hoping BZA gets approved soon. I don't remember, though, if it only helps with bone mets or if it's also used for mets in other places. I need to have an honest talk with my MO when the time comes to do chemo. If the benefits are small, I may opt out of it. Of course, that's easier to say now than it will be when the time comes. I remember when I finished chemo the first time, I had a No More Chemo party. I told everybody that no matter what happened, I'd never do chemo again. Well...when the cancer came back 11 years later, I did chemo again. We'll see.0 -
Hi ladies, I hope everyone is doing well and looking forward to Thanksgiving next week. In spite of my diagnosis, I am feeling so very thankful for the Lord's blessings. Except for the itching and an occasional headache, I am feeling good. Our family just took a trip to Disneyland and I was able to walk all over both Disneyland and California Adventure for two entire days. I even went on most of the rides. (skipped Tower of Terror and the big roller coaster, but I skipped those even before my diagnosis!) I know that the time I feel good is limited, so I am just trying to enjoy each day as it comes. A month ago I didn't think I would have the energy to take a trip anywhere! (If anyone has any more suggestions for the itching, I would love to hear them too)
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Linda, I itch a lot, too. Eucerin helps quite a bit. Claritin didn't help me. If the itching gets unbearable, I use hydrocortisone cream. I try really hard not to scratch, because it tears my skin and makes me itch more, but sometimes I can't stop myself. Also, I try to distract myself by doing something.0 -
HAVING THE NOSEBLEEDS MYSELF THIS BITES. THEN PUT THE ITCHING IN THE MIX PLUS NOW I HAVE A SORE THROAT AND MY EYESIGHT SUCKS GETTING A COLD JUST IN TIME FOR THE HOLIDAYS GO ME !!!!!0 -
Deb, I hope you feel better soon! I haven't had a nosebleed for a couple of days, and the head and stomach are better. The itching is really bad, though. Hydrocortisone cream helps with the worst places. Have you tried that?0 -
hi girls, I haven't been here for a while and was sad to see Granna has stopped treatment because of her terrible side effects. Mary, please be careful with your eye swelling as you don't want to end up with the same issues of scarring, I know how tough it's been for you and sending a big hug. I find that the heat makes the itching sores and if I am cool it's much better. But I also think perhaps I am getting through this died effect now as has been no where near as bad the last couple of weeks. My son brought me an extendable metal back scratcher which is the best thing as I can lay in the recliner and scratch my feet lol. Caused my back to bleed the other night but thankfully that is rare now. No ulcers, no acne, no nose bleeds etc no major issues except fatigue and the days of feeling just off in general. Only around a week and a half till chest x ray to see what's happening in my lung. Overall doing well compared to many, so hoping we can all get through the side effects and live well with them. Love Gail0 -
I just got the results of my lab work from last Thursday (It's posted online.). My CEA is 7.2, down from 7.3, and my CA 27-29 is 46.5, up from 31.9. It makes me afraid that the Afinitor at 5mg isn't working, and that I'll have to either go up to 10mg or consider chemo. I'm hoping it's something else--tumor flare? Anyway, not what I was hoping for. My cancer grew really slowly for the first 16 years, and I know that I'm lucky for that. In the last year, though, it's really sped up. I haven't had any remission since I was diagnosed as stage 4. I'm afraid I'm going downhill pretty fast.0 -
(((((Mary))))) Couple of deep breaths, take that brain off that dark path and focus on something you are grateful for, something that brought a smile to your face, or maybe just know that you are loved, and it is just fine for you to feel as you do. But I do hope you can join me in having a moment today that has something good about it, despite all the really really bad stuff in our lives. Today my baby sister has been with me, cleaned out my refrigerator and went grocery shopping with me, and now we are home for an afternoon nap and then maybe happy hour. Yes, that sounds good ..... happy hour!!!!! Join us!!!!0 -
Well, happy hour does sound good, and so does being with your sister. When I had my hip replacement surgery, my sister came for almost a month to help out, and one of the things she did was clean out my refrigerator. Thank Heaven for sisters! Last month, my DH and I went on a 3 week vacation with my sister and her DH. It was a great trip and now a happy memory. We're ordering a pizza for dinner tonight, which always cheers me up!0 -
I'm the same Mary, my tumor markers had doubled in a matter of weeks and I am just hoping that next time they have gone down, as I think it's the afinitor causing it. I hope this is the case with you. I go by the way I feel in general and I think if I had issues that I would be worried but until I find out the worst I refuse to spoil my days worrying over something I have no control over. How is your eye now? I hope it is improving. Linda, what a lovely sister, I wish I could join you both for happy hour, here's cheers!0 -
Hi, Australia. My eye is much better. The eyelid is just a little swollen and kind of flaky. I think you may be right about the Afinitor causing the TM's to go up. I think my MO will call if he thinks there's a progression. Actually, I used to be able to feel the mass in my abdomen, and I can't now, so it must have shrunk. My hip is hurting more, but that may be bursitis caused by the metal plate around the femur. Here's hoping we're all in for a period of remission!0 -
Still feeling like crap, at the moment hot baths help the aches the acne on my scalp is still there Australia how long have you been on the combo for the SE's to ease0 -
Deb, what is your dosage? I'm in my second month, still on 5mg. My MO doesn't want to increase the dose while there are still significant SE's. It worries me a little, though.0 -
I am on 10 mg Afinitor woo wee if this an indication it is working I am going to be NED haha I hurt so bad right now but could be a combo of the cold outside my being sick and the meds I really don't know and my eyesight isn't so great either Seriously am down at the moment and I usually live for the Holidays and I find myself wanting to cancel them I know I am being awful and selfish but I am getting so tired of it all Sorry to rant0 -
Deb, don't be sorry for ranting. I think you feel worse than I do, and I'd also be glad to cancel the holidays. I feel too tired to prepare for them. My husband and I go out to breakfast every day with friends, and then I come home and work for an hour or so. That uses up my store of energy for the day. The holidays will be tough.0 -
I survived Thanksgiving! I hosted the family dinner, and with lots of help, had a great time. I also got both holidays covered because I did my Christmas shopping online and had a box ready to go home with each of my family members when they left. That being said, I am EXHAUSTED and will be paying dearly for the next few weeks - oh, wait, I have a full week this week as well!!!! I know that the pain hits in the early afternoon, won't let up without pain meds. I go to bed about 8, wake with severe pain about 6 am, manage to get moving by 9 or 10, and I also have about 4 hours of work time before the cycle starts again. Wishing I could find a way to get more energy because I keep thinking if I could just push a little more, I would then develop more strength and stamina, you know, like when you were young and training for sports - more effort causes more fatigue initiallyl, but in the end really builds you up! So why does that not work now???0 -
Hi, Linda. I don't know if exercise would help build up our stamina. I suspect that what we have to do is use our limited stores of energy carefully. I've been decorating in 15 minute sessions today, followed by a longer rest period. I just can't sustain the activity, and I start getting dizzy and sick if I do too much. Standing and walking are the worst for me.0 -
Hi sisters,
I haven't posted for some time but have found your various posts both helpful and encouraging. Unfortunately my own association with A/A has come to an end. Congestion in the lungs and my onc is changing me to Megace. Any advice about that?
I note that many of you have had major problems with itching ~ so had I and the only recommendations I ever got were to take anti-histamines i.e Piriton and Xirtex. After months, and only two weeks before being taken off the regime I discovered a food supplement Nettle Juice ~ fresh extract from the Stinging Nettle and it worked!
Best wishes to all
Mariol
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Thanks, Mariol. I'll try the nettle juice!0 -
Hi, well I am in a bit of shock at the moment as the onc has taken me off affinitor/aromasin! I was not expecting this at all. She looked at my feet and my nail that had fallen off and asked me to show my tongue. Said at least I had no mouth ulcers as a lady on the treatment had just been in with holes in her tongue from shocking ulcers. Got to thank this forum on suggestions that work. I had a chest x ray earlier that she could not see because her system was down, so she will ring me in a couple of days to let me know the result. I am being taken off as she said my markers have always been an indication of how I am doing and they are rising so quickly she suggested something is going on and treatment is not working. I was skeptical and said " you don't think it is the affinitor causing the markers to rise?" But she didn't agree with that. So I am having a 2 week break from any treatment to give my nails a break before I start some chemo drug that starts with Z and is a tablet that won't effect my hair but does effect your skin and nails. My son is upset as I was told it was the new miracle drug, but I must say I am happy to go with the flow as it's a pretty tough treatment and I was feeling so much better earlier this year than I do now. Quite shocked though that I was only on it for 3 months, but why would my tumor markers double every few weeks? I have a tiny 7mm spot on my liver and asked if that could be causing them to rise and she said possibly but then went on to speak about the immune system and how they can't say what it does with these drugs. I said to her I only have a ct of my chest area and what if there is done thing going on in my brain? She explained that they could do a ct but don't like to unless have headaches, seizures or vomiting. She listened to my chest and could hear a rattle in the left lung in 2 areas which is no surprise after the ct showed congestion. So ladies, I will keep you informed of my progress and sending you all my best vibes for a successful outcome for all of you. I feel like we are pioneers in this combo as I researched the internet so much and really this us the only forum that has any current information on people actually posting how they are doing. Why if this is supposed to be the new wonder combo are we being taken off it so soon, surely they knew of the terrible side effects before we are treated? Love to all Gail0 -
I was taken off Aromasin after tumor markers were rising every month. My Onc substituted tamoxifen for the aromasin and my markers have come down from 212 to 85. I am still on Afinitor. Don't know how long this will last but the aromasin was the problem for me. I actually feel a lot better as well. I do go to a teaching hospital and the doctor is able to switch meds around a bit. Hope you have success on the new tablets. I think that may be next for me if my current treatment fails. We are pioneers in this disease but am hopeful a vaccine will come out soon.
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