Afinitor/Aromasin
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I would say that my energy is pretty steady. I can only do one big activity per day but I do manage. You gotta pace yourself. Are you drinking and eating well? are you sleeping well at night? I was told with radiation fatigue to not give into it and remain active, that naps dont usually help with the rad fatigue. I am taking that advice into the A/A combo, too. My problem is in the insomnia. I have always been a great sleeper but can not get a good night since starting this thing. Tried taking gravol, benadryl and melatonin. works a bit but not great. might need a sleeping pill soon.... really dont want to add to the medication list but night time sleep is so important.
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Sue,
I don't have many side effects with Aromasin & Affinitor except mouth ulcers & sores on my body. My physician assistant gave me a prescription used to treat acne that dries up the sores. I also used canker-rid found on amazon or online to help with the mouth sores. It seals the sores in the mouth & relieves the pain, but does sting when you first put it on.
I hope you do well on this.
Terri
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I didn't get mouth sores from the meds but then again ones of the gals told me to buy empty capsules to put them in and I did and my onco said I could you can usually order them online the size is a 1 if asked and I have some left over if anybody would like them they are just clear and made out of sugar so the pharmacist said although most pharmacies don't carry them I found one that did and I would be more than willing to share contact info if you would like as for insomnia mine kept getting worse so my onco gave me a sleeping pill called trazadone its mild but helped a lot.0 -
Deb, do you have to take the pill every night or do you think it would work if, lets say I have tried unsuccessfully to sleep and then take it at 2 am or will I then be too doped up in the morning? I have never taken a sleep pill and somehow am really afraid of them.
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well ladies, I'm leaving the A/A thread and heading over to the Faslodex thread. My Doc is taking me off the A/A combo. My tumor markers keep going up and I have more disease progression per CT/PET scans last week. Can't say I'm going to miss the toxic cysts and other side effects. But, also not happy with disease progression. Thanks for all your wonderful words of advice on this thread!
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Thisisme, I took them whenever I couldn't sleep and as l had at least 6 hours to sleep I never woke up drowsy however I took the lowest dose, I to am always afraid of pills of any sort so I wouldn't be to worried if I was you but may suggest that you wait til you can sleep late for the first dose just in case it is different for you but truly don't think it will be. Ask your doctor for help because we all need rest to fight this ugly beast.
hugs, Deb
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Thisisme - my onc ordered trazadone for sleep. I looked at the SE and decided against it. I reacted rather badly to restoril and dalmane. So I wasn't up for a trial run of trazadone. I wanted to try the lower dose ambien but that wasn't offered. So now I take melatonin 10mg and that seems to work. If I wake up at 3 or 4 which happens all the time, I take 5mg more. Melatonin has a very short half life and will disappear from your system and not make you drowsy in the morning. I have been told melatonin can cause bad dreams but I never remember my dreams and so far haven't had any bad ones. Don't buy walgreens brand their melatonin did nothing, Naturemade brand works the best for the $.
Skylotus - good luck on faslodex. It's easier in some regards then A&A. Hope it works for a very long time.
I see the cardiologist tomorrow to address the unending edema which is now shin height, ankles and feet. Lovely. I can only wear flip flops. What and I going to do in winter?? I already take maxide and lasix..ugh.. SO now to unravel which is causing this, the drugs or the heart.. or both. hmm. I'll keep you posted. I should change my sign name to waterlogged..
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thanks Rosevalley, I do melatonin too, trader joe's chewables. It's like a little fresh breath mint before bed! ;-)
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My kids take melatonin. I took 10 mg a few nights ago and had a dream all in rhyming verse and woke up with a really bad headache. I will try a lower dose. it works wonders for my kids. I am also trying to follow good sleep routine with no computer use, regular routine and reading, etc. before bed. Benadryl helps a little, too. I find that I am awake a lot to either go pee (several times a night) or because of a power surge/hot flash. I will give it one more month and then consider a taking something. thanks all and now, good night....
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Good morning, all! I've been away for a bit tending to family. With 5 kids there is never a dull moment! My oldest moved home this week and 2nd oldest was having a hard time and is on her way to stay with us for a few weeks.
Anyway, got my scan results and they were not bad! Nothing new, stable on most areas, 2 areas bigger and stronger. A little mixed, but overall good, pointing to this combo working, although a bit slowly. So, I decided to give it a bit longer to work a little magic. I will be a bit more aware of the swelling and fluid retention this time. I've also changed my diet completely and I'm hoping that will keep the fluid retention at bay a bit more. I'm eating mostly vegan with an occasional egg and some fish. No sugars and very little gluten too. I've been back on the combo for a week now and so far, just one mouth sore, but all else seems good.
I also decided to try a new pain plan and I've added Celebrex to the mix. With extensive spine mets and the Aromasin causing so much aching and joint pain, I thought this was worth a shot. I think the inflammation in my body has been out of control from so many sources.....diet, disease, meds.....hopefully attacking it from multiple angles will start to put a lid on the fire.
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Romansma,
Glad your scans came out ok and you got rid of the fluid retention. Hope the AA combo continues to work for you. I'll have scans again in Aug, but the rads certainly helped to eliminate my lower back mets.
Terri
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Romansma, I am so happy you got mostly good results. I really hope your changes in diet and meds help. Be sure to let up know, And don't forget to do a little stretching if you can. A/A seems to really help some and the SE even seem to get better.
I don't think the results for me were quite as good, but it kept the skin lesions under control, TM's didn't change too much and abdomenal progression was slow. I've been on the Faslodex x3, the Halaven x4, and the rads to my skin mets 19 out of 25 . TM's are down from 200 to 107. No CT yet, probably in Sept, Oh yes, I'm still on Aromisin.
I take celebrex and cymbalta every day.
Good luck with everything You are such a trouper with 5 kids. I'm thinking of all of you of this thread and praying for miracles .
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I was offered more radiation for a couple of the spine mets that have grown. I declined for now, mostly because my experience with rads to my cervical spine was tough. I had immediate, severe, nerve pain in my arms and I have lasting neuropathy. The current mets are in my thoratic spine, so maybe it wouldn't be as bad. I think I'm second guessing my decision to decline the radiation since even though I have neuropathy, the tumors are resolving in the areas that were radiated. My initial thought was that AA just needed a little more time to work on these couple spots. But, the larger the tumor load, the harder it is for these meds to work. Guess I'm just thinking out loud here.
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Romansma- sounds over all positive. Yay. You will love Celebrex good stuff. Wish there was something for neuropathy. I don't know how you do it with 5 kids. Wow I am impressed. Also impressed that you managed to get rid of the edema.
I saw a cardiologist today and got my diuretics changed and he added a beta blocker. We will see if that slows my fast heart rate and gets this fluid off. Still wearing only flip flops because it is all that fits.. which is fine in summer. Other tests done but no results yet. Still wondering if it's the heart or the cancer meds or both. Have to wait and see. My weight was up 8 pounds from the oncs office - different scale. It' been hot here and that exacerbates the edema in my feet ankles and shins.
Trying to remain positive. There was a woman in my husbands office who graciously made our family lasagna back in Jan when I couldn't do much. She put the sweetest note on it. The kids loved it so yummy. At the time she had finished chemo and cancer treatments for a very serious cancer. It came back in April and she died last week. Just depressing. She was younger then I am. I wish they would find a cure.
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Glad for your good news Romansma.I rec'd my cat scan results yesterday. It was good news for me. The two lymph nodes that were affected in two previous cat scans earlier this year and last, presently do not show on the cat scans. The other areas of cancer are all stable, no progression. My oncologist was very pleased and you know I am too! I'll continue to stay on 10 mil. a day Afinitor/ with Aromasin. My oncologist said further down the line, he may reduce dosage.
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Naturegirl- Congrats! Great news. I am in awe you can tolerate 10mg a day. Wow.
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Rosevalley - thanks! It's been no picnic for me on these drugs. I have my days, ya know? I'm glad it's paying off for me though. I thought about having the doc to either decrease dosage or go to every other day but why rock the boat when this is working, at this time, and hopefully for a long time. He did say further down the line he may decrease dosage. It's been 4 months since I started A/A combo.0 -
Congrats Naturegirl. Definitely no walk in the park. I've been on 10 mg everyday too, except for the break when I had all the swelling and water retention. I'm feeling pretty intern pose fatigue the last couple of days. Still just one mouth sore, but getting bigger. Here we go!
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Thanks Romansma. I wanted to tell you that when I first joined the A/A thread, you wondered why my oncol. did not start me on Faslodex before A/A. I asked him that question the other day. He said because A/A works! I also asked him what I will go on once A/A no longer works, he said Faslodex and there are some trials at this time with other meds. to take in conjunction with Faslodex. I'm hoping I can stay on A/A for quite a long time. I get SE's, like most people here. At the moment, my palette is sore, just above my throat. I use magic mouthwash and it helps some.0 -
that's funny, didn't remember asking that. Btw......anyone else irritated that when you start typing (I'm on iPad) the first letter doesn't auto capitalize? If I backspace, it does. Anyway, that was a bit A.D.D. Faslodex seems to be a bit less toxic, so I guess it made sense to me that it would be in line before AA. But, the fact that it works sounds like even a better reason to go with AA first. Faslodex didn't work for me and yes, felt like I wasted 4-5 months on it. But it was easy!
I have some magic mouthwash, might try it today before eating. My girls, 21 and 22 yrs old, are trying to get me to co out to a club tonight. Yeah right! Maybe if I go back to bed now and stay there till dinner time! Definitely getting the fatigue setting in again.
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Romansma - did you take another med in conjunction with Faslodex while you were on it? If so, which med? I think I just answered my own question, as I looked on your treatment list. Femara right? It looks like many of the ladies that are on the Faslodex thread are taking Faslodex alone.How's your mouth sore? Do you do anything special besides magic mouthwash and warm salt water mixture? I'm dealing with pain and burning of the lower roof of my mouth and toward my upper part of throat. I'll be off of A/A combo starting tonight for 3 to 4 days. I'm also having soreness and tenderness of my scalp at this time. Whew, but hey, A/A is working for me.
Rosevalley- are you still on A/A combo or are you now taking Faslodex, a combo maybe?
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yes, I took Femara with the Faslodex. I believe the studies were all done on that combo. It's an easy combo, but didn't seem to work for me. I had quite a lot of progression after 4 months. Maybe it would have worked if I stayed on it longer, but I wasn't willing to chance more progression. My bone mets are already widespread.
As far as mouth sores, I had given up dairy, so I no longer bury the pill in yogurt. I had been taking it bare until I too the break last month for all the swelling. No problem till I started up again. It's still just the one spot, so I'm not too worried. When I started this combo back in January, I was also taking radiation to my spine and hip. I got awful blisters in my throat and esophagus. Couldn't even drink. Watch out for any progression in your throat area. Steroids cleared it up for me, as well as a 2 week break from radiation and AFinitor.
I had the scalp tenderness when I started AA back in January. It went away after a couple weeks and I haven't had a problem since. I'm just watching for water retention and swelling these days. It snuck up on me last time. I guess I thought I was gaining real weight. As it turns out, 12 lbs of water came of in little more than a week.
Hang in there everyone. Finding something to keep this cancer at bay, even if for a little while, can do wonders for your state of mind. It makes all the fatigue and side effects just a bit more tolerable. My last scan has motivated me to do all I can to help my body fight off this cancer and become stable. I have Hope!
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Hey All- I hope everyone is hanging in! Tomorrow I am going for an MRI of my back. I had crazy numbness and tingling in my arms, legs, neck, and face last week and it freaked me out. It has now almost gone away except for some periodoc tingling. Just wondering if anyone else has a had a bad case of numbness from this combo?
Best to all
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Hi Toronto, hope you figure it out. Shortly after starting Afinitor, I noticed a strange tingling feeling in my feet when I walked for more than 5-10 minutes. As the weeks went by this strange tingling feeling would go UP my legs and now when I go out for a walk, it eventually moves all the way up my legs into my thighs. It makes me unsure of my steps and discourages me from being as active as I'd like to be. My MO has mentioned the studies on Cymbalta for treating neuropathy. I need to do some reading.
I saw my MO yesterday. Nothing new, except my platelets are pretty low. Has to be the Afinitor. No swelling and BP still ok. Fingers crossed! Really hoping AA keeps working for me with tolerable SEs!
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Hi All,
I hope you are hanging in there! I finally got the results of the cardiac work up to find out if the miserable leg swelling was cardiac or cancer drug A&A related. In my history I have always had left axis shift on my EKGs, my 2007 history writes moderate ventricular thickening, and the highest my ejection fraction has been was 55%. Well since my crash with severe anemia in November through March of this year when I had no bone marrow and needed 17 blood transfusions - and was wildly short of breath, things apparently have taken a spectacular turn around. My echocardiogram from July 14th, 2014 shows an ejection fraction of 65% (best ever!) and no ventricular thickness at all! It totally vanished. I guess even considering everything my heart made it through the severe anemia of just 4 months ago and now is the best it's ever been in my 55 years! Wow. Incredible, hard to believe.
Which all begs the question why I have such severe edema in my feet, ankles and shins - and why with moderate activity I am short of breath and winded and tired. In the morning the skin on my toes is wrinkled, by the afternoon I'm puffer fish. The cardiologist had put me on coreg, torsemide and epeleronone to control the swelling. But what is the point of taking all this when the CAUSE is the cancer drugs and not the heart? So I am quiting the above three meds and going back to the old losartan, maxide and lasix. Less side effects. I cancelled further cardiology appointments. I had an oncology appointment last Friday and my H&H improved to 12 and 37.8 on just aromasin. But the swelling neuropathy and lousy endurance/ fatigue kind of ruins QOL. I think considering my options of staying on aromasin and wearing flip flops year round (since I can not get my feet into shoes) and never having much endurance to do things, I am going to call it a day.
I am leaving this forum and wish you all the best outcomes on what ever treatments you decide on. Cancerland can sure dish it out!
Take care and have fortitude. love to all.
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Greetings all:
Rosevalley I am sorry to hear you have had such a problem with swelling but s/es are crazy to deal with. I have noticed with the AA combo that I just get used to dealing with one set of side effects and then they go away and a new set rolls in to stress me out. I have just started with the arm and facial swelling mixed with tingling in hands, feet, legs and arms. When they all came at once my whole body felt numb and I called my mo. He booked me for scans but my symtoms have improved. Sometimes, it's hard to tell what is what on these crazy drugs! Good luck on your new path and Romansma thank you for the info it made me feel much better as I lay in the MRI machine as I have the exact same thing! Praying for good scan results and waiting for "the call" today. Is 8 am too early for wine?
Going to try and enjoy this beautiful day!
Best to all
Toronto
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Rosevalley, the best of luck to you. At least you got good news with regard to your heart. Sorry you are having the swelling issues. Someone should give you a definitive answer.Can anyone tell me the size number of gel caps to put the Afinitor in? I was thinking a #0, or #00?
I am having issues with the roof of my mouth hurting, seems I can't get any relief. I had my 2nd root canal inside of one month. This time on the front tooth (crown). Now, all of the teeth to the right of the crown are hurting. They were hurting before the root canal. I am discouraged. I'm wondering if Xgeva shots are reeking havoc on my teeth and bone inside my mouth. Arrrrrghhh. Can anyone relate to this?
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Rosevalley, so glad your heart is ok. I can relate to the swelling, but going off the combo ( both Afinitor and Aromasin) for 2-3 weeks, combined with watching my diet very carefully, allowed me to lose the water. Are you still taking the Aromasin? Have you tried cutting all packaged food (salt) and adding lots of water rich foods (fruits like watermelon)? I know it may not be that simple, but I was surprised at how much water came off so fast for me. It was 12 lbs in less than a week. I m back on the combo now, but sticking to a careful diet, mostly vegan, nothing processed. I'm hoping it helps to keep the swelling to a minimum while on this combo, because that was miserable. I really hope you find something that works for you Rosevalley.....and something that gives you some QOL too!
Toronto, I'm crossing my fingers, toes, and eyes
for good results on your scans. I agree, the SEs on this combo do seem to come and go. I restarted about 3 weeks ago and so far, just a couple of mouth sores. No scalp sores, no swelling, no reflux.....yet! On the mouth sores, it occurred to me that one of the things that may have been helping me was the probiotics. I've been a little haphazard on taking them, so I think I will step it up and see if that helps. Naturegirl, it seems like it's one thing after another! You need a break! I don't have any experience with the dental issues because I'm afraid to have anything done these days. I'm on Xgeva too and I've heard there can be issues depending on how long you've been taking it. Has your MO cut back on how often you get the Xgeva? I got it monthly for about 9 months and now I will get it quarterly. I guess there have been too many jaw problems with the monthly injections. Let us know how you are doing!
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The aromasin went in the trash. No more for me thanks. Afinitor went there too, in June. I am going to do what I should have done in January. My oldest kid has end stage cirrhosis so our family has been on a hysterical no salt diet for 3 years, that has not helped. I live in Oregon and wearing flip flops in winter is not an option. I am sick to death of all of this. My tolerance is zero. All my kids are in good places and now I will be too. It's pretty bad when every time one of these ladies checks out in hospice and it seems there has been so many recently - I feel a pang of jealousy! They are free of cancerland, free of SE, free of appointments and BS!
Good luck to you all. I'll check in, read up and wish you fortitude and peace.
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I wish the same to you Rosevalley. I do understand. Please let us know how we can support you.
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