Afinitor/Aromasin
Comments
-
Rec'd my Canker-Rid yesterday, used several applications and it really does help! Finally getting relief. Be careful tho, as it stains, accidentally spilled some in my basin, cannot remove stains.
Shelf life is 6 months.A week a 1/2 ago, I rec'd my lab results. Hemoglobin down 1 point from borderline, so I'm now considered low, but, only by 1 point. My oncol. didn't seem too worried. I told him I would eat red meat, and he said that would not do any good. He didn't seem alarmed, last month I was borderline now this month considered low hemoglobin. I sure don't want any blood transfusions. I will have my lab work again July 11th. A few days from then, I will have cat scans. I sure am hoping good news but, my cancer antigen level went up 15 points since the last time. I look like shit (excuse my expression) and thinking from low hemoglobin? I have dark circles under both eyes that began about a month in 1/2 ago. I've never had circles in my life of 63 years. I'm on my 4th month taking A/A combo, 10 mil. daily. This is no picnic for sure.
0 -
Matter of fact, I'm getting off of A/A come tonight for 3 to 4 days. I'm going out of town and want to enjoy myself and this just sucks. I can't take it anymore.0 -
Hi all! Hanging with my boys this week. Been off Afinitor for about a week and my ankles and feet are turning into blowfish! My ten yr old thinks they are funny looking and laughs. What the heck now?
Any ideas? Want to go to a water park tomorrow, but it hurts to stand for long.....
0 -
Romansma - that's pretty swollen, but I got you beat! My feet are just scary. When I flex my feet the creases turn white the skin is so tight. I haven't taken afinitor since the beginning of June. Maybe the edema is from aromasin which I continue to take. My hands swell too. The onc gave me lasix, but I had so much diarrhea that I couldn't take it yesterday. My intestines have never been the same since chemo. I bet all my salts were off yesterday, felt wobbly and wiped out tired. It hurts to have feet that swollen.
I finally got my PCP to refer me to a cardiologist instead of a cardiothoracic surgeon.. don't ask. I try not to ask what motivates them to do the insane things they do. I get in the 2 week of July. Might have relief then.
Have any of you women had your heart checked out since you had the ACT /adriamycin cytoxan taxol combo? If so what did they find?
0 -
O.K. guys those swollen feet and ankles are indeed a problem and one that should be checked out by a dr. ASAP - I wonder if it is the Aromasin but I dropped the Aromasin at the same time I dropped the Afinitor and have never had this problem - btw it takes 6 weeks for the Afinitor to wash out of your system - I would get to a dr. and see what's going on - this isn't good for your heart!
I saw and continue once a year to see a cardio since my chemo six years ago - my heart was slightly enlarged - no other problems, I go again in September.
0 -
thanks ladies. I hope the results are available tomorrow. I just looked at my blood work and the CA is up, however, it has never been up before, even when first dx so hopefully just my cold that has affected it. Also, somehow I seemed to have taken a double dose of A/A. when I went to take today's dose, it was already missing from the pill dispenser so not sure when I took it. Weird. I just called my gyne because I was scheduled for a uterine biopsy in next couple of months but just had some bleeding so am asking for it to be brought forward. seriously, does it ever end? But the good news this week is that the (very cute) back surgeon does not think that my back needs to be cemented as I havent lost any height and it is not too painful. SO I dodged that procedure.... My son's friends are asking if we are going away this summer and all I can think of saying is, "Sure, as long as I am not on chemo, I dont have uterine cancer and my back doesn't collapse". anyway, I am rambling out of nerves so will just sign off and take a deep breath.
0 -
Good bye Afinitor/Femara! After 12 days of Afinitor the BCO does not recommend continuing. She was impressed with the quick onset of mouth sores ( 2 days) and the rash and feels that I would have same outcome on reduced dosage so now we will try Xeloda. I tried talking the specialty pharmacy into taking back 16 pills still individually sealed in exchange for 1/2 of my $2600 co pay, all the time knowing the answer would be no. I will take them to MO for sharing with someone who also has a high co pay. Wishing all of you on Afinitor a meeting with NED.
0 -
Thisisme - well some good news and some concerns it sounds like. I am glad you are having the GYN check up. Happy your back has held together with out needing any intervention. (I have lost a full inch in height because of mets to my spine, but it doesn't seem to effect me too much. No one ever suggested intervention.) I hope the rest of your tests give you good news. Lots of folks ramble when they are nervous - it's normal! Lets hope you get to take your son on that vacation and enjoy yourselves!
Crone - I am so sorry you got slammed with mouth sores in 2 days, impressive. Good luck with xeloda. That's some co-pay OUCH! Maybe you can deduct it? Wow.. I wish you much success with the new treatment. I hope the co-pays are way less.
0 -
Crone, I had great results with Xeloda and was on it for 2 or 3 years. Can't remember now. I did have diarrhea and the sore feet but it was totally manageable.I did a slightly reduced dose and 14 days on and 14 days off. I learned all the bathroom stops for any long or short trips I was taking and got really comfortable shoes. I went to Hawaii, Disney and Mexico while on it and did not miss a beat. I hope the same for you.
Back from onc appt today. The stable boy is visiting me! And has actually taken away some stuff. Pleural effusions are less, chest nodes are smaller as are liver spots with nothing new. Yup, I will take that. Oh and doc says that many things can raise the CA-15, even uterine fibroids, a cold, inflammation, so not too worry about a little blip. Now to get uterus sorted out. I will sleep well tonight.
0 -
Great news! Hope it continues.
0 -
Good news, thisisme, congrats to you!
I contacted Onc about feet while I was on vacation. She is convinced it's the Afinitor even though I haven't taken it for about 10 days. She says she may need to add dieretic to the mix in addition to blood pressure meds. I wasn't convinced. I stopped the Aromasin that day and guess what? The swelling is going down. It's not gone, but better. Might be a coincidence, but I am going on a drug break (except pain meds) till Monday to see how it goes.
I often wonder where I'd be in the progression if I didn't take all these drugs. And then, I see or hear of someone that they work for. And then, I get back on the wagon till the side effects get the best of me again. Then, I wonder again. Rinse and repeat!
0 -
I'm wondering if we would all be better doing the palbociclib trial instead of A/A.
Terri
0 -
Romansma, my feet are also started taking Aromasin alone. Cannot wear anything. But i am continuing with till the end of august . With all the swelling your feet still look nice:). I hope you feel beyter with this break.
0 -
Yes, I think we'd all be better on the trial but I've been turned down by five of them so far so I've given up - they all have different criteria and you need a navigator - my cancer clinic doesn't have one - so I have to find the trial and then onc sends my file - way too frustrating - hoping the palbo is ready soon for all of us. Meanwhile the A/A a hard as it is has given me some regression even though I wasn't on it long so.....
Romansma - glad your swelling has gone down - watermelon is a natural diruetic why not try some of that over the weekend. BTW it takes six weeks to clear these drugs from our bodies so things will be interesting for a while.
0 -
i think celery is also a diuretic. not sure, but dont limit your water input, keep drinking and try and put your feet up as much as you can. I hope it works, but a little lasix diuretic will get the water moving. Just dont take it at night!
0 -
Hi all! My swelling is going down, I have ankles again! I gave up wheat, dairy, meat and sugar since Friday and it seems to be helping. Oh yeah, I also stopped the Aromasin last week, did I mention that? I saw my MO today and guess what? Blood pressure is down considerably. Not normal yet, but on it's way. She agreed that I should stay off AA for now and I have a Pet scheduled for Thursday. I guess we will know how this is going by next week. Until then, I will stay on my elimination diet (as much as I can since it's 4th of July this weekend) and try to get the rest of this water retention drained off. I'm getting up 3-4 times a night to pee. Exhausting, but so nice to see my ankles and wrists again!
Bottom line, this combo has caused considerable swelling, as well as high blood pressure for me. Tolerable....IF it's working!
0 -
romansma, that must be a relief! I did not know swelling is a side effect. This drug combo seems tough! I may be going back on it. I had some weird genetic testing and it says affinator is a genetic match. Doctor wants to get the cancer under control before starting back on AA since it works slowly?
0 -
Romansma - glad you're feeling better - I had very little swelling but my PCP checked me for it every two weeks and asked me questions about my ankles and feet - my bp went way up and I had to up my meds for that, also has anyone been checking your blood glucose level? Mine skyrocketed but is now back down to normal (it took six weeks) - if you can handle this treatment then good - I was on it a very short time and I had regression so I'm keeping my fingers (and everything else) crossed for you. S.
0 -
Crone,
Mugard is a prescription mouthwash that actually helps heal the sores. Unfortunately, it is very expensive and most insurance won't cover. It's about $250 for a bottle. I went ahead and got some and only use for the really bad mouth sores. For me, it was worth it for those awful ones.
Also, a small dose of Prednisone that I take for a maximum of 5 days in a row has helped tremendously. I start it when I feel a sore coming on, and I take for up to 5 days.Then, I take at least a 5 day break from them (usually more). Bonus, insurance will cover that!
Just FYI , I have been on Afinitor a year now, and the mouth sores have gotten much better with time. The first ones I had in those first few months were horrible! Also, I've figured out how to do the Prednisone and mouth washes to maximum effectiveness.
Anyway, I hope the mouth sores get better for you!
Julie
0 -
Interesting to read of the swelling. I have had swelling, too. Mine has been milder, but happens all over. I have swelling in my sinuses and get stuffy, my shoes feel tight, and I can see swelling in my face. I also think my headaches may have to do with swelling.
I have also had high heart rate and high blood pressure. A cardiologist put me on low dose of a beta blocker and that helps.
Thank you all for sharing!
Julie
0 -
Yes, Julie, my swelling is all over too, just most noticeable in my arms and legs. My face has been puffy too. I've never had blood pressure issues, but I was in hypertensive range for about the past month.
No problems with glucose levels, though. I will report back once I have Pet results. I hope it has been working, but I have my doubts.
0 -
Mine has worked for a year now and my last PET was clear! My TM going up, tho. So, wonder if something is brewing.
Hoping for good results for you!!
Julie
0 -
Romansma, i am glad you are better and hope the results will be worth all your SEs. Wishing you wonderful results
0 -
I've lost 9 lbs of water weight in the last 5-6 days. I guess the swelling and water retention snuck up on me over the last few months. It was making me very uncomfortable. If I go back on this combo, I will be ultra aware of this now.
0 -
wow 9 lbs! Hope you feel better!
0 -
9 lbs. WOW - bet you do feel a lot better.
0 -
good luck with your scans Romansma. Waiting for my meds to come so I can start doing something to stop the recent progression. Wish me luck
0 -
Thanks! Really hope this works for you. It has for many others, so there's lots of hope that it will for you too!
0 -
Bumping up to see how everyone is doing. I had D&C and biopsy to see why all the CTs are showing uterine thickening. It is just one thing after another. I always say that healthcare is like a home renovation, once they expose one thing, they always find something else to investigate or fix. I hope all are well, side effects are manageable and scans are good.
0 -
Hi all- well it's almost 5 months on this combo and I am hoping that all is working. I have my next scan on August 5th. In the meantime I am wondering how everyone else is doing in regards to fatigue. I seem to have a couple of good days, where I tend to overdo and then feel very rotten for a couple of days after. I NEED a nap or twoeveryday when I hit the fatigue wall or the affinitor attack of symptoms will occur. I am usually in bed by seven! I am just wondering how you all are finding it. I am much better than when I started but I miss my energy and being able to do two things in a row, like shop and then actually put the groceries away. I am only 47 but move slower and sleep more than my mom who is 83!
0
