Afinitor/Aromasin
Comments
-
I just started taking Afinitor and Aromasan. I was up all night with horrible lower back pain. It was so bad that I felt like I was going to throw up. I am still in a lot of pain. Did this happen to anyone else? Is this normal?
0 -
Hi Sonya, I have been on this combo for almost two years with no progression and some healing.
It is very tough at the start but when it starts to work gets muchbetter.
Strangely enough Affinitor will evertually diminish bone pain caused by the co- ex.
Make sure you ask for something for nerve pain if you need it.
T
0 -
highhopes-I can't believe I didn't see this sooner, you posted a response to me in July! I was not told that the two could not be taken together, and I take them both every night at bedtime with a glass of water but no food. Yikes! I guess I need to do some more investigating!
Was anyone else told this?
sony-I have had some weird side effects that only last a week or two and then disappear. Headaches were one, nausea another, rash, etc. I did not have any lower back pain though and I think you should call your Dr. I call the pharm/oncologist when I get these things just to let him know, and then he relays the info to my Dr. I had some skin pain/tenderness around my waist and hips for almost two weeks, but today it is gone. I have taken Lyrica for about 2 years now and it has helped tremendously with joint pain. I have a PET scan scheduled for the end of October and then I will find out if A/A has been effective. I was very nervous to take it, but so far I am doing Ok on it. I haven't had any mouth sores, sometimes I feel like they are coming on but I rinse with baking soda and so far so good.
How is everyone else doing on A/A?
0 -
Starbrightlyshines,
If I didn't ask the pharmacist, I, too, would have taken them together. Check the information on your Aromasin or Exemestane prescription bottle. According to mine, Aromasin or Exemestane needs to be taken with a meal. Afinitor can be taken with water.
My last lab work wasn't great. My glucose level was high, hemoglobin high, sodium low and BP high. I also have an upper respiratory infection. My TM are dropping and my last set of scans were clean. After I finished with my oncologist, I went to my GP. He doesn't believe that the upper respiratory infection is a side effect from the AA combo but I will see a pulmonary doctor next week. He checked all my meds against each other (luckily I'm only taking a BP once a day). He discovered if you're on Afinitor you shouldn't take an ACE inhibitor. He changed my BP med to a Beta blocker instead and my BP is going back to normal. He told me to stop eating carbs for the glucose, add more meat and veggies that are high in iron and protein, add a little salt to my diet. The antibiotics are helping the respiratory infection. It's amazing how powerful these drugs are. I wonder if the oncologists check all the possible side effects.
Sorry to ramble on but thought I should pass along my recent experience but as long as the meds are working I'll deal with the side effects. I really like my GP as he took the time to listen and check everything. Instead of prescribing more medication, he gives you a work around with diet. I hope he never retires.
I hope that you and every else is doing well on the AA combo.
Take care one and all,
Highhopes
0 -
Thanks for checking in Highhopes. My main side effects is a rash (taking an antihistamine helps) and pimples on my scalp and a few on my face. So far my labs look OK and my tumor markers have stabilized which is good because they had been on a steady rise since last spring. I had a PET yesterday so I am awaiting results. Strangely I seem pretty calm about it. My life has been turned upside down recently, my dad was ill and passed away. It was so unexpected but it is still hard to think about. I have a dd in college and I am really missing her. She wants to do a study abroad program a year from next spring. I am so happy and exicited for her, but it seems so far away and I can't help but wonder how my health will be at that time. My dh is off hunting this weekend leaving me home for all the Halloween festivities with my youngest 7 and 12 yo. I just can't get into the spirit. I haven't put out any decorations, carved pumpkins or decided what we are going to do. We don't live in a neighborhood where the houses are close enough to trick or treat so we will have to figure out something. I just don't know how people manage this condition *and* continue to live a normal life. Right now I just want to hide in bed. This is totally not A/A related but I seem to be able to pour out my heart here more than anywhere else.
0 -
I hear you starbrightlyshines!!! I could crawl back into bed and stay there all day. I do think it is in part AA, but also some severe depression. I need to go get on an antidepressant ASAP! Having thoughts of giving up this fight. I am sure we have all been there at some point. Just feels like I have been there for awhile. I have been on such a huge roller coaster. I was NED for about a year and then my bone mets starting being active again, and tumor markers started to rise. This happened in July. My dr wanted to put me on AA back then, but I was scared of it and wanted to enjoy my summer. I had a PET in September and that was when we found about 20 small tumors on my liver. Lots of guilt about not starting the AA when MO told me to...maybe the cancer wouldn't have made it to my liver if I had listened to the dr. I have a 10 and an 8 year old. How could I be so selfish?! I need to work through that guilt and I am in therapy.
I started at 5mg and first blood test showed that my tumor markers went crazy high...CEA 77.7 CA27-29 3588 CA15-3 425. SCARY!! So MO changed me to 7.5. retest in one month. I had all the hope in the world that these numbers would start coming down...but nope..went higher CEA146.7 CA27-29 4542 CA15-3 834. REALLY SCARY!! MO doesn't seem too concerned so he took me up to the 10mg, Now we have to wait another month to see if this is working. Has this happened to anyone else? Could this possibly be a flair? I will have a PET late Nov or early Dec. Really interested to see if the tumors are growing or shrinking.
Also anyone happen to know what is next when AA fails? IV chemo? I was hoping not to have to do that yet. Maybe another chemo pill? I go see MO next week so I guess I have a lot of questions. Just want these numbers to go down.
Also for anyone on here with liver mets do you have a bit of pain in the liver. Is that the AA working or is that the tumors growing? Also right shoulder hurts. I recognize this pain from right after I had my liver biopsy.
Thanks for listening to me. Needed to vent. Just feeling really discouraged right now.
0 -
Hi All, I am sorry to here that the side effects with this combo keep on coming!
I have been on the AA combo now for about a year and a half. I have figured out a few strange treatments for weird side effects that work for me- not sure if they will for you but worth a try as they are not harmful.
1) AA hates the sun. If you get too much sun and you start to have a weird AA attack ( nerves going buzzy. temp changes, rapid heart beat etc.) put hydrocortisone cream on where you got the most sun- I had some left over from radiation and it can save my day. Also works on rashes and weird burning skin pain.
Also even in the dark wear 55 SPF. I can burn through the sun roof in a mall.
2) If you get really bad bone pain, ringing ears and what seems like crackling in your nose and sinuses - Try Claritan non-drowsy for some reason it works on bone pain- they are not sure why
3) I have less side effects when I have a glass of wine at night- apparently it kick starts the liver and process the Affinitor more quickly
4) Advil Migraine is my saviour as well as Cymbalta for nerve pain.
5) Gasto issues are bad on this. Try Goat yogurt smoothies and your day will be less loud and your toilet bowl cleaner. I try not to eat until about 11 am after my smoothie in the am.
6) This made me lactose and gluten intolerant so watch the carbs. Don't leave the house without Gas-X.
7) Make sure to take a multi-vitamin and your Calcium/ Vit D
8) Gatorade and real coke will set you straight if you feel wonky or dizzy and weak.
9) Moisturize and use really good scalp conditioner.
10) Water aerobics and yoga- even though they may seem like the last thing that you want to do will make you feel better.
I am trying a whole food/organic diet even though I cheat and it seems to be helping.
That's all I have figured out but I wish someone had told me at the start.
Best to all,
T
0 -
Toronto
Thanks for all the great information. I took my first dose of afinitor today. It is great news you have stayed on the combo for 18 months. I. assume you are stable.
Thanks for the info and hope.
Sonyarriz
I do hope you get good info from your MO. My MO gave me a choice of iv chemo, A/A or Faslodex. And he said I would be eventually on all(one at a time). I choose to start with A/A and started it today.
good wishes for comfort and peace
Mary
0 -
I am new to this thread, but will be starting Aromasin tonight, and adding Afinitor to the mix next week. I am wondering how you ladies are doing on this? Any suggestions for me as I start? And what have been your most common side effects? Thanks in advance for your helpful information!
0 -
I just started this week as well. I have been on extemestane(generic Aromasin) for 9 months then had progression so added. afinitor this week.
My only problem with aromasin is increase in migrains. I have asked for steriod mouth wash. I use it twice a day to try to avoid mouth sores which is a common side effect with afinitor.
Three days in and no SE yet.
I am interested in. learning from others as well.
0 -
I also just recently started this combination of drugs. I'm on Day 3 of my third week. So far I haven't had much trouble with side effects. The first couple of times that I took Afinitor, it left a burning sensation in the back of my throat. Since then, I've been dipping the pill in yogurt and swallowing it that way and no more sore throat. I take both pills right after dinner and did notice a bit of a headache and a stomachache the first two days but I basically slept through those symptoms and they went away after the first week.
I've always taken L-Glutamine powder to prevent mouth sores which was a big concern of mine because it was a problem for me pre-cancer. I can't know for sure if the L-Glutamine is the reason I don't have mouth sores or not but it's easy enough to take and my doctor approved it so I'm sticking with it.
My big problem right now is fatigue and I can't tell how much of that may be related to A/A because I recently had 10 days of radiation for back pain. I'm certainly hoping it's related to the radiation and will eventually go away.
Glad to see this thread more active. I've meant to go back and read through it but alas that hasn't happened.
I'm curious what dosage everyone else is on. I started out at 10 mg which I think is the highest dose.
Best of luck to everyone on this combo.
Pat
0 -
Hi everyone, great to see so much company here! For me this drug is the follow-up to failed Ibrance, I wonder if things will get busier here because of the timing with Ibrance's approval and time to tell if it was working?
I'm just at the end of my 4th week on Afinitor. I had some headaches and minor nausea the first week, but those went away pretty fast. Over the 4 weeks, I've had a couple small spots of rash that weren't bad enough to itch, but they're getting better too. And some occasional minor headaches still but Advil deals with them.
The big side-effect (or biggest impact) was mouth sores that came up on day 10 and lasted about 9 days. I'd been wrapping the pills in marshmallow and swishing with baking soda/salt water regularly, but it didn't prevent them for me. They were really bad, but my onc told me to skip the pills for a couple of days until they started to get better. I took 3 days off and they actually continued to get better even when I started up again--I honestly didn't really believe that would happen but glad it did! So far it's been 11 days since I started back up and they've stayed gone.
No fatigue after that first week, really right now I feel terrific!
At my 2 week appointment, my tumor markers were stable from where they were when I came off of Ibrance 5-6 weeks before, which I take as a very hopeful sign. Scans coming up at the end of this month, hoping for good news!
Wishing everyone success on this drug!
0 -
Sorry, GemState, I missed your question: I'm on 10mg, too.
My onc and I both believe the problem with Ibrance for me was that I had such trouble with my white blood cells that I had to keep going off and dropping down with the dose. I ended up on the lowest does of that drug and it just wasn't enough. So, I'm really, really glad to be holding steady at the 10mg of Afinitor
0 -
Roses - I was on AA last year for about 6 months (can't remember) - I am now on Faslodex (and it's working) - the AA worked for me but I had shortness of breath among my se's and they pulled me off of it - it did however lower my TMs so I know it worked! For mouth sores I used a compound mixture often referred to as Magic Mouthwash and although it is very expensive - it worked like a charm. Wish you good luck on this tx. I monitor this thread so if you have any questions...I was on the 10mg dose and my onc wouldn't lower it, although some will.
0 -
Thank you, 208sandy, so kind of you to keep up with this thread and share your experience still!
I used the Magic Mouthwash when the sores were really bad--it was a nice hour of relief but a long 3 hours till I could take the next dose, but fortunately it was more helpful as the sores got better! So far so good with them not coming back, but I'm keeping very vigilant since I know they could come back.
I took a lot of comfort from so of the earlier posters on this thread who said things were a lot easier after the initial month!
And Sandy, so glad to hear it worked for you--also probably good they pulled you off quickly rather than risk permanent lung damage, but what a disappointment! I was on Faslodex as my first stage IV treatment and it did a good job keeping me stable for 14 months, plus the side effects were easy for me. Wishing you a easy and long run on it!
0 -
Roses - I followed you on the Faslodex thread before I was given it for tx so I was able to use your knowledge to help me along with the se's which I must say are minimal compared to some other txs. Wishing you a long, easier time on AA. Hugs, S.
0 -
Is anyone experiencing a nagging cough with the AA combo? The longer I'm on the AA combo the more sever the cough has become. I've tried almost everything is and I can't seem to shake it?
0 -
hi highhopes
I just spoke to the novartis rn today as I just started A/A this week. She said a cough is a side effect but could also indicate a scary lung condition and encouraged me to call MO anytine I had a cough.
good luxk
mary
0 -
Just noticed skin rash on my arms. I will call rn in the am to see what to do. Anyone else have this SE?
Mary
0 -
3-16-2011 I had sort of raised bumps on my upper arm and some spots and small rashy areas on my lower legs after starting the Afinitor. Mine weren't bad tand didn't really itch so I kept them lotioned with Euricin and they eventually went mostly away. Hope yours are gone soon!
0 -
3-16-I had a rash also and now whenever I feel like it is coming back I take 24 hour Allegra. It really worked and after the first rash I haven't had another one. I do have a problem with acne type pimples that pop on up my scalp mainly and around my hairline, occasionally on my face. I have tried putting coconut oil on my scalp before I shampoo (it can leave your hair oily if you don't get it all out) and it help. I use Neutrogenia grapefruit scrub on my face when I feel a sore coming up. It has salicylic acid in which really helps.
I have been on it for 5 months and I am noticing how thin and brittle my nails are. They keep breaking even when I try to keep to keep them short.
Also, I have found Spry toothpaste worked really well. I didn't have any mouth sores but since I ran out last week I am trying another type of toothpaste and I feel like my tongue is getting sore. My dentitst recommended the Spry toothpaste for my son when he had a large canker sore and it worked like a charm for me. I found it in the natural food section of my grocery store.
I think the fatigue has gotten better. But I have found that I just can't really push myself like I used to. It is so frustrating especially this time of year.
Let's hope this combo works well for all of us!
0 -
Hello, everyone. I was on A/A two years ago when I was first dx'ed as stage 4. However, I could barely walk at that time with severe bone pain and lack of balance that my MO switched to Xeloda after only one month of Afinitor. Now I am giving it a try again. Today is my day 31 of Afinitor 10 mg. I have been using the magic mouthwash and do not have any sores right now. I am noticing that my skin is very dry, especially around my eyes and mouth. My regular face moisturizer and eye cream do not seem to do the job. Any suggestions?
I am due for blood work next week and will find out if TM is moving. I am really praying that it is doing the job.
0 -
Well that was fast--I think I posted in this thread 2-3 times, but I've been on Aromasin 6 weeks and my oncologist told my yesterday that she wants to move on. I had an ultrasound of the mets in my liver and there's some progression. She said it was slight, but she wants to be agressive, so on to Xeloda.
Wishing everyone great success with Afinitor! Please keep in mind that I developed my mets while on tamoxifen, and have been through Faslodex and Ibrance already, all in the past 2 years, so please don't let this bring you down for your own treatments
0 -
Sorry Roses for your progression. Good luck on the next treatment. We are all so different, who knows what will happen.
Hansalm I have acne on my face and no dry skin on my face, but everywhere else. I do use a shea butter moisturizer everywhere else. I have a steriod mouth rinse and have avoided mouth sores.
Star my MO recommended claritin and it is helping with my rash.
0 -
Hello AAers:
Glad to have some more company on here. Roses sorry to hear about your progression. I heard Xeloda is an easier ride except for the hand and foot!
I just wanted to let you gals know that my ringing ears and buzzing sinuses turned out to be very high blood pressure. I recommend that you keep an eye on it after you have been on AA for awhile. I think mine started before due to stress but who knows. My MO said it was a common side effect and I have started BP meds that have me very unenthusiastic.
Wishing everyone a great day! I have scans after Christmas and will let you know how they turn out. That will be almost 2 years on this combo.
Take good care,
TO
0 -
p.s. My nails got so thin they broke if I looked at them so I coated them in crazy glue under polish and kept them super short.
They are still thin but better now.
0 -
I had high bp previous to taking AA and switched from lisinopril to losartan due to possible interaction with Afinitor. But my BP is very stable.
My rash has disappeared thanks to claritin. Lots of lotion daily. Acne contines on face and back.
I wish us all well. How quickly did people get scans after starting AA?
Mary
0 -
I started A/A in late October and will be scanned at the end of December so two months since starting. My last scan was Oct 6 and that is what my oncologist seems to be basing scan time on since she scans me about every three months. My tumor markers were down a tiny bit when I had them taken last week so I'm hoping that A/A is at least keeping me stable. My TMs are usually pretty reliable for me.
So far so good on the SEs. Sometimes my stomach seems a little upset but it goes away quickly so not sure if this is a SE or not. Unfortunately, I'm so hyper aware of every little ache and pain these days. My main complaint is achy/sometimes painful hips and thighs. Again, I'm not sure if that's due to A/A or not.
I'm also hoping we all do well on this combination of drugs.
0 -
My MO asked me to stop Afinitor because the white count is too low. My neutrophil is 1.0. It is my day 40 of Afinitor now. Anyone else with now white counts with Afinitor?
0 -
I have low counts also. Not as low as yours (1.6) Yesterday I had. a familar exhaustion like when my counts got so low with chemo for my stage2 fight back in 2011.
I am washing my hands like crazy. Will you go back on after a break. Do you have any symptoms? I wonder if a neulastin (poor spelling) shot is available.
peace
mary
0
