Afinitor/Aromasin
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Hi JustJean - as one of the Afinitor fails, I am rooting for you! If you find progression has your onc discussed Ibrance and/or faslodex for bone only mets? Ibrance + fas lasted 18 rounds for me and was doable noting fatigue and 2nd month when I requires a blood transfusion - but I was able to work full time! Pay my bills and drive. Starting to get very fatigued now and hurt my arm at Petco stretching in an aisle to get cat food. lol Now my right arm which I start IV chemo on Tuesday is in a sling. Sigh Go away cancer, not today. JFL - please keep us posted. Aramantha - I will pm you more pics of my lovely Seine river cruise. SO glad I went.
(()) C
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Well JFL, that's really sucky news. I am so sorry to hear. I hope they get you something that works on the liver mets, and that you respond swiftly to it. I sure hope you keep on coming back to this thread to keep us posted.
HI Shetland Pony, thanks for asking. Well, I have my PET scan this coming Thursday Aug 17. But I am sure I'll be all "skeered" for the results, I hate how they make one wait until seeing the oncologist to let you know what is up. (Four days later = four days of torture).
Thanks for coming around JustJean. About mouth sores, you know what, I had them really bad at first and now not at all. All that just went away (and other side effects took over, like swollen leg, and tendon problems, WTF ?) - So anyway, after three or four months the mouth sores issue just went away, and so did the bad taste. Thank goodness. That ought to be good to know, because the horrible thought I had before was, am I going to have mouth sores and a horrible taste for the rest of my life ? NO.
HI Tigwin, thanks for the courage ! I think its working.
Lalalady / Claire, thinking of you and hoping the "Big Chair" will be a walk in the park, relatively speaking.
I'm feeling pretty good about everything right now, even though the aches and pains are still with me, and if seems like my whole body is falling apart, but aside from that ... I had a fantastic visit with my sister and her husband who were so kind to come and visit me from the States, and spend time just having fun. It really cheered me up tons.
Hugs and courage to all.
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Hello Wonderful Ladies!
Well one goes in the chair tomorrow and I get my three shots tomorrow.
LALady...I will be over by Cedars at my Onc's office. I will send you positive vibes down Wilshire Blvd😊
Amaratha...all good vibes for Thursday! I have only had one mouth sore but it was a big one. Almost gone. Strange thing, no appetite at al but I am busting out of my pants. Concentrating on everything I eat is healthy and very basic flavors.
JustJean....I have a similar story to starting then stopping due to denial from insurance now back in Afinitor. Just recently. I am thinking positive that it will like me 😊
Hang in there everyone.
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Thank you all for mentioning me. It's been a lonely journey with no one else really understanding the importance of being on this medication AND the importance to my quality of life.
I've been on 5mgs for a few weeks now and I have to say that (crossing my fingers and anything else I can) that I haven't had another mouth sore. So... maybe for me, going through those pills from a small amount up to a larger one is a good thing. I don't know if I should stay on 5 mgs for one month or two before going up to 10mgs. Any thoughts on that?
I'm so tired. Most days I can hardly get off my ass. I sure am tired of feeling like I'm 85...
Good thoughts to all and thanks for letting me join the group!
JJ
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justjean..,I hear you loud and clear. I always go back to what my Onc told me. This disease is hard to treat because what works amazing for one does not work at all for another BUT !!! We will never stop trying and we will keep fighting. Go with what works and trust your instinct. Don't be afraid to tell your Onc what you are thinking. Iget up every day to live. I am so tired some days I feel like I have narcolepsy. I literally come home from work and pass out with that drool sleep 😴 but then I find some energy and get a good day and savior it. I have started going to a therapist because I don't want to always be talking about itvwith family and friends. This is helping a lot to not feel so isolated. When I am with family I just want to be me not me with cancer. Trying to have as many good times as possible. Thinking as positive as I can, which is hard at times but pushing myself. Hang in there.
Let's be record setters !!
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I just met with my MO and we settled on Abraxane every 3 weeks starting on Friday. My center has a Dignicap scalp cooling machine and I will be doing that in hopes of keeping my hair.
As for Afinitor "failing", my MO thinks it did slow things down so it wasn't a complete failure. I only have a bit of growth in a few liver lesions. I had an "explosion" in my liverwhen I failed the Aromasin/Faslodex/Ibrance combo and this was definitely a much better situation than that.
Claire, I will be joining you on another drug! Have you started Abraxane yet? I have high hopes this one will do better for us.
Just Jean and Tigwin and the others, I hope you do well on this drug!
Amarantha, how are you feeling with the side effects? Any progress made with your MO?
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HI JustJean: I started the Afinitor regiment yesterday and I'm not looking forward to it all. LaLady1 told me to have my onc go straight to Xeloda and so did HusbandII. I will talk to my onc next week. My collar bone toward my shoulder is killing me today and throbbing where I had 1 bone met. it was my humerous bone. I haven't had trouble with any other bones so far but since my tumors have gotten so big it could have flared up again. I hate the fatigue thing. I just lost 80 lbs from gastric sleeve surgery hoping it will help my cancer but it didn't. one thing I can say it that the radiologist doesn't say I have an acute fatty liver.lol God bless us all and I hope we all find the right medication that will help each and everyone of us.
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Good Evening
JFL..Here's to the new medication doing a spectacular job. Glad to hear it was a small bump in the road vs a huge one.
Buras54 ... are you on pain meds? Once I started the treatment my pain went down dramatically. Hoping that happens for you to.
As for my treatment today...did not make it. Have to reschedule. 😞
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My fatigue has been very high for months now. Today I had one of those rare days when I was able to get a lot accomplished. Photo store, sewing machine store, Wally Mart, BMV, AND went to the gym. Most days the gym is just a fond wish with no reality. In my "old" life this would have been no big deal to accomplish. Now? It's a big day!
Buras, I wish you well on this journey, as I wish us all well. All we can do is our best, and sometimes my best is pretty bad, lol, but today it was pretty good!
JJ
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Hi ladies - checking in from my first round of Abraxane and cold caps. Abraxane only takes about 2 hours. Drinking a ton of juice and taking another dulcolax. Now I understand why I was so tired and backed up. oy Tigwin - rooting for you at Cedars, Amarantha - thanks for being my friend, JustJean - we are here for you, and JFL - you must be med stalking me. lol Let me know how you do with Abraxane. I will post here for awhile, so ask me anything.
(())
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Tigwin : Thanks for the good vibes. I got them !
JustJean : I think the tiredness will eventually go away. Well I can say that I feel much less tired than when I first began the Afinitor. It really knocked me off my feet. Slowly I feel my strength coming back. Or maybe just getting used to it ? The doctors say just to give in to it, and take all the rest you need. I believe you will eventually feel better. I very much like what Tigwin wrote.
JFL : Thanks so much for visiting. I wish you the best for keeping your hair with the Abraxane.
HI Buras, glad to see you here.
lalady : Wow, good luck with the Abraxane to you too. So happy for a friend
So I had my TEP and yesterday met with the oncologist. The right side ganglion appears smaller, the TEP also shows a little less activity on the left side (sort of) but - the skin shows progression - I asked if we could do a biopsy, the oncologist said no point, because if they find more cancer, we won't want to change the treatment for now. No point in changing treatment early. I guess she is worried about eventually running out of treatment options. The TEP also shows activity in my tonsils, but she assumed it was not cancer. So hmmm. Going to see the regular doctor about that when I can. Meanwhile I am feeling a lot better painwise, or else I have just gotten used to it. My regular doctor has given me L-Glutamine to help with the joint and tendon pain (which he feels is a side effect of the Afinitor), and also a radio to do of my right elbow. I've stopped taking the Tramadol for pain. He gave me fancy pro-biotics to restore my digestive system on the theory that the persistent diarrhea (or how ever the heck one spells that awful word) is partly responsible for the low iron, and my tearing chipping breaking fingernails. I was surprised to find I had lost some weight despite going off my low-carb diet and pretty much eating what I want, including muesli for breakfast, and ice-cream ! I'm enjoying food more, and gobbling it up - as though I really needed it. Wondering whether the good taste of things has actually come back or I've just gotten used to the altered taste of things. Oh - and I've been singing up a storm, have a concert in California in early October and another one in France at the end of October. I hope the traveling doesn't knock me off my feet. I spent the whole day working on memorizing my music while IRONING ! Oh - I did go back to taking one quarter of a pill (that makes it 5g) of Paxil - an anti-depressant. I did not think I needed it but it certainly helps me keep my mind off death and dying and cancer and just do other stuff. Today I went for a long swim in the lake near me which I dearly love. It is my salvation. I swam at sunset and the sunset was in the water. I almost got run over by a dragonfly.
Best Wishes, courage, beauty to all.
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Hello All,
New on this thread. Took a break from this site to travel and enjoy the summer with my grandchildren Had four great months on Fulvestrant and Pablociclib -- significant drop in tumor markers, all mets to bone and liver disappeared or were diminished confirmed by PET scan. Six weeks later markers triple and early PET reveals disease progression--especially in liver! Have spent past month scrambling. I am nervous about Afinitor (Everolimous) and Aromasin (Exmestane) but have a trial opportunity with these two plus Pablociclib (Ibrance). My other option is Doxil. I tolerated Pablociclib really well--but reading over a portion of this thread makes me really nervous about Afinintor and Aromain. Has anyone had good luck with this combo?
Any feedback would be greatly appreciated.
Kimberly
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Kimberly - I did 18 rounds of Ibrance +faslodex until progression. I had 2 months on Afinitor + femara with a total fail. Seems very few ladies get a good run here - being brutally honest. If your progression included liver, it seems onc try this combo and/or then move to Xeloda. Everyone is different, but there are trends. Please discuss dosage with onc and what next steps will be if A/A + Ibrance fails you. Maybe adding Ibrance will help. Rooting for you!
(()) C
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I started AA about a month and half ago and my liver enzymes have shot up along with abdomen pain. I have an apt with my ONC today and am curious if anyone else has experienced this and what was done to get the liver enzymes back down? I am concerned because I was told this is my last option before going back to chemo. I also have had several new spots show up since starting AA but was told I needed to be on it for a full 3 months to see any results. Problem is one of my spots is causing severe pain and if its decided to do radiation on the spot I will have to get off of AA which would extend out the timeframe to see the full effect. Looking for any feedback from the group that could help when I talk to me ONC today.
Thank you,
Heather
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Hello All,
Well my as of today my tumor markers have gone up 600 points since the first week in July. I am so bummed. At my June 28th PET and blood draw I had the lowest tumor load and lots of shrinking tumors...now everything is a mess. Went to Dana Farber last week and considered a trial which included Ibrance, Afinitor and Aromasin; but after seeing these number my MN MO is concerned that I keep progressing on estrogen blockers and since I have had progression with Xeloda, Cytoxan and Taxotere she believes it is time to move onto Doxil. Thanks you for all the feedback on this combo. Will go in search of a thread for Doxil -- and check in with those who have liver and bone mets.
Wishing you all the best on this combo!
Kimberly
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Kimberly - gentle hug to you in MN. With a TM spike of 600 points, it's likely your cancer is now hormone resistant - meaning none of the A/Is or Ibrance will help. If so, chemo should help you. In addition to Doxil did you discuss Abraxane or any other chemo? Please ask your onc as the SE's can vary and we want you here with us for a long time. Please keep us posted.
(()) Claire
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Dear Claire, Thank you for your loving note. For 18 months I just had nothing but bad news and got used to just being one of those people where nothing worked. Then the Ibrance and Faslodex worked spectacularly for four months. I felt like myself for the first time since January 2015. I will investigate Abraxane as well. Both my MO at Dana Farber and my MO here in Minneapolis believe that Doxil is the correct step -- apparently some women have tough SEs and others do not. I will just try and keep up my normal walking, Pilates, biking and grandchildren and hope that fatigue won't catch me quite as hard as prior to Ibrance. Thank you again for reaching out and I will look for your posts!
Hugs,
Kimberly
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Hi everyone,
It's interesting to me that so many of us have experienced progression while on Afinitor. My case seems to be a bit different in that my onc put me on the Afinitor/Exemestane combo before I had experienced any progression other than the bones. However, my last PET scan mentioned something about very minor changes to the liver, so perhaps that's why she wanted to try this, to attempt to delay that progression as long as possible.
My plan of starting with 2.5 mg and then 5 mg and then the prescribed 10 mg seems to be working. I've only had one mouth sore and that is a blessing. Tomorrow will be my first day on the full dose. I'll see the onc in a month or two and then I'm sure she'll want another scan.
It's a good thing that I am on disability. There is no way that I could hold down a full time job. My sister and I went to a big local fair today for a few hours and when I got home I fell asleep in the recliner! This happens any time I do something for more than a few hours.
Off to feed the critters. They don't care that I'm muzzle-headed from that unintended nap - they want their dinner!
Hugs to all,
JJ
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Hello Ladies
I hVe been on Afinitor and Flacodrx and xgeva got 20 months with the Ibrance failing at month fourteen. Took samples of Afinitor and while on the two weeks of sample my numbers went dow. Had to appeal fasodrx as I did terrible on the amarosin I took in the past. Out of samples for a week, two more weeks of samples and the finally appeal approved. Got Afinitor and nubmerst are going down.
We are all different. Right now my only side effect is being tired which I can manage.
Just wanted new Afinitor users to know there is success for some. We are all different. Keep the positive energy rolling, I know we all need it 💕
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Hello ladies,
I'm starting AA tomorrow. Scared of this change (from faslodex which I failed hard). For some reason I'm so down and blue right now about this. I read all your posts and think everyone sounds so strong and positive. I want to get back to feeling positive. Wondering how this combo will affect me. I'm still working full time and am hoping I can continue to do so...
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Hi Laurie,
New treatments are hard! There is grieving that the old one that we were used to is gone and all the anxiety that goes along with what side effects will you get, will the treatment work, etc. Totally understandable to be blue. Good luck with this new treatment!!
With love and hope,
Kimberly
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Laurie,
I've been trying to get on Afinitor for months now. You say you ind us all strong and positive? I'm sure some are. Me? Um... no. I feel like a total failure. It's been months, after several tries I got up to full dosage a week or two ago, and now I have three mouth sores - one on each side and one on my tongue. I'm going to keep it up because I hear it gets better in time, but I don't feel either strong OR positive. Except that bc SUCKS.
JJ
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Thanks you guys.
Kimberly, I do feel like I've been grieving a bit. It's weird to process all the different emotions that come at different times.
Jean, are you doing the steroid mouth rinse? My doctor gave it to me and I have to do it 4x a day
(like that's not a PIA), but apparently if you do that you don't get them?? or at least that's what I've been told. Jean, I have also been feeling like a failure, I think that's been part of my blues/depression. I feel a bit better now that I've started the new regimen. Have only had 2 doses so far, but right now I feel pretty good. still struggling with the blues a bit but coming out of that hole a little. Will keep moving forward 1 step at a time...
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Yes, Laurie, I do the rinse 4-6 times a day. I put the pills inside of 00 capsules so the pill doesn't touch my mouth or throat. I drink it with a full glass of water right after eating breakfast.
I'm seeing the onc on Thursday and am going to see what else she might have in her arsenal so that I am able to stay on this stuff. I can deal with most of the other side effects, but mouth sores really affect my QOL and that is something I Do. Not. Like. Or. Appreciate!
I hope it goes much easier for you. Many women don't seem to have the kinds of side effects that others do.
JJ
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Sorry you're dealing with that, Jean.
Mouth ulcers are the worst! I've only just started this combination so we'll see if I get mouth ulcers. I am prone to canker sores so know how painful that can be. 0 -
Well, it looks as if I may be leaving Afinitor and going on to something else. I had an appointment with my Onc today and there is an engorged lymph node. She thinks that something is on the move and when we find out PET scan results next week (I'm having it on Thursday) if it does look that way we'll be going to the next step.
But even if it's simply an infection or something non-cancer related, she'll take me from 10mg to 5 mg of Afinitor. She agreed with me that the FOUR sores I have in my mouth right now are not acceptable.
Crap.
JJ
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Ugh, Jean, I'm so sorry. 4 sores
. Hoping the lymph node isn't cancer. 0 -
Yeah, I lost about 5 pounds in the last few weeks because of these sores. I was happy this morning to NOT take that Afinitor, because she told me to stop taking it entirely until these sores heal.
In the meantime I'll continue to get ready for a trip to SC to visit my best friend and her husband for about 5 weeks. Oh my, we have some fun things planned! But there's so much to do to get ready and I have no energy. Oh, for the days when I could be busy all day...
JJ
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affinitor has caused major problems with me. Last petscan in April 2017, I was NED. My onco decided to add affinitor to the xeloda which I had been taking for almost 2 years. I devolped a cough in August which has resulted in my lungs to only work at 50%. I have shortness of breath which has been horrible. My petscan also shows a new liver lesion.only had bone mets before this. I am having a biopsies to check to see if I i sm still er+,her2-. I have been on 2 rounds of steriods and 2 antibiotics to clear the lungs, but nothing is helping. I will also be having a bronchoscopy to determine if it's an infection or cancer in the lungs. The petscan only shows white streaky lines. Has anyone had success of lung improvement with a certain chemo drug? My onco is taking me off xeloda and will determine what to switch to after my biopsy, she is thinking kadclya if it is lung cancer.
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Bethmom, have they ruled out tumor cells in your lung arterioles? These tumor cells will NOT show up on xray and CT scans. I was too sick for lung bx, dx made from VQ scan. I had to go on AC to quickly kill them. I could not breathe and had symptoms similar to PE. The AC worked.
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