Afinitor/Aromasin
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I had a wonderful Christmas,but after boxing day became increasingly breathless and got to the point i could not walk 10ft without laying down. Luckily i had a follow up appointment with the lungs specialist on Monday and,my oxygen level was so low i have been in hospital since.
I had a Ct and turns out the infection is clearing from the steroids but have,multiple blood clots in both lungs which may or may not be cancerous. So now i have to inject blood thinners the rest of my days to combat the clots. Still waiting on heart ultrasound results to see if clots are putting a strain on arteries. Onc saw me yesterday and said i will start chemo when my lungs are improved. So i will still follow this thread with interest and wish you every success with it . Love Gail
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Gail,
I hope your medical team can resolve the clots & get you stable again. I'm also on A/A combo since Oct.
Terri
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I started the Afinitor/Aromasin combo just after Thanksgiving and was taken off after 18 days because of mouth sores. MC started me on the compounded steroid mouth wash four x a day when I started the combo, but I don't know what the dilution was. I've been off for about 10 days and will be seeing to MO tomorrow for further treatment. I think he plans to keep me on Afinitor. I went into "chemo fog and fatigue" within about a week. Is this your experience and did it get better? I'm going to try the marshmallows and I noticed on the package insert to drink a full glass of water when swallowing the pill.
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So sorry about the lung problems, Gail. I'm glad you're still following this thread. It looks like most of us don't actually get to stay on A/A for all that long. I didn't know blood thinners were ever injected. I hope that's not too difficult for you. You're in my thoughts.
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Danishgirl, I put my Afinitor in marshmallow cream and drink a full glass of water. I don't know if that has helped, but I've only had 3 mouth sores, and they cleared up pretty fast. I'm only on 5mg Afinitor pills, though.
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Thank you Mary, home from hospital today. Very sore back, i hope its from the lungs and not my spine playing up. Doing the injections in tummy twice a day which is a pain but ok. I am going on a cruise with my son to New Zealand 2/2 and onc has said i will be on chemotherapy after that,, i hope i don't loose my hair again when its just growing. Don't you hate that you go through all this treatment and there may be no happy ending. Love Gail
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Gail, the hardest part to accept is that there will be no happy ending. I'm doing pretty well right now. The itching is creeping back and I have some issues with the Prednisone, but overall, things are pretty good. I think my husband and daughters understand that my time is limited, which helps me to not have to put on a "show" all the time. Basically, I'm in kind of a depressed place right now, but hoping that after some rest (the holidays were hectic) I'll feel better. Hope things get better for you. Shots are a bummer.
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I hope you do feel better soon,i think it helps everything so much better if you feel at peace. I think my situation is becoming a reality for my son as we were getting a puppy,and he said last night perhaps we should not get one with me being sick and he having to do so much study at uni etc to look after it. Made me happy its starting to sink in, but sad that these are his worries.love Fai
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How do I dispose of my afinitor? Being as it is chemo I don't want to just put it in the trash. Besides it seems like a crime to throw away meds that cost over $10,000.....
I also have a lot of gel caps if anyone would like them. A friend mailed them to me because she couldn't tolerate afinitor and I have a lot left, she purchased a huge bag. I have no use for them anymore and would be more than happy to mail them to someone that would like them. Just send me a PM with your name and address and I will mail them out to you
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LuAnn, I agree it would be a waste to throw them away. Why not ask your oncologist? I don't think I'd mail them to anybody--it's probably illegal, because it's a prescription drug.
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Luann, I'd ask a pharmacist how to dispose of the Afinitor.
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Hello, everyone. I haven't posted for a while as things have been up in the air, but I had the results of my latest CT scan today and it's showing a bit more growth everywhere, plus I've still got problems with my left lung (pneumonitis following a partial collapse back in October), probably caused by a combination of the Everolimus and the cancer itself irritating the pleura (although no cancer is showing in the lungs themselves). So I'm now officially off the A/A combo. To be honest, I've been off it more than I've been on it over the last couple of months, so it's really no surprise.
I now have a course of antibiotics and steroids to try and sort my breathing out and this evening, I'll be starting Femara, the last of the AIs for me to try. My onc is hoping to get my lungs to improve before the inevitable chemo options ahead, as she said I'd be at too high a risk for nasty lung infections to have chemo at the moment.
In the meantime, another lump has come up in my collar bone and I've been having a lot of pain in my left hip, so I'm going to have a blast of rads to knock that on the head. Previously inconclusive hot spots in my spine are now showing up as healing mets as they are healing, which is good news! But this wasn't really how I wanted to start the new year... Still, onwards and upwards and fingers crossed for the next treatment!
Best of luck to all of you still on A/A - I hope it'll work well for you with minimal SEs, but make sure you look after yourselves and your lungs!
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Angelfalls,
I hope Femara brings you stability. I got 4 years out of it, then went onto A/A combo this past Oct. I did have more joint issues & arthritis with the Femara than the A/A.
Terri
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Angelfalls, I hope you get a good run with Femara, and I hope your lung issues get sorted out. Will you still check in on this thread to let us know how you're doing?
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Thanks, Terri and Mary. I'll keep checking in with you all from time to time. You don't get rid of me that easily!!
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Hello,
I am still new to these boards. I had scans on Wednesday and MO in Los Angeles called me last night to tell me that I've had progression on the A/A combo, was only on it 2-3 months. In my liver I have new lesions and the old (that were shrinking away on Xeloda) have regrown. The bone activity has increased also. MO wants to start me on Abraxane and get a port put in. She wants me to start immediately which I do to but I want to get a second opinion. MD can get me in on Thursday. Any advice? I'll start to search through threads about Abraxane as well but I'd love to hear from you!
Thank you and good health to all of you!
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Hi everyone! I've been on the A/A combo for a week now and really haven't had any problems-thanks for the marshmellow creme hint-but I do have a few questions. Has anyone had transient bloating and pain in the stomach after taking them? Has anyone gotten gastric ulcers? When I had regular chemo a few years ago I was on stomach meds- I bet I need to go back on them....Thanks for your thoughts! Kelly
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Jess, sorry I don't have any info on Abraxane. Why did your MO take you off Xeloda? Anyway, I hope you do well on your new treatment. I've been on A/A for almost 3 months. My tumor markers went down a little last time, but I think my abdominal tumor is growing, or it might be in my liver now. The tumor was to the left of my navel, but now I feel a mass (I think) to the right of the navel. Oh, well, really no use speculating. I see the MO next week.
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Kelly, I have quite a lot of bloating, along with occasional abdominal pain. I went back on Omeprazole, which helps with the pain, but not the bloating. I have a tumor in my abdomen, so the problems may be due to that.
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Thanks Mary!
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Jess. I was only on Afinitor/aromasin 3 months also and have ended up in hospital twice in 2 weeks with a lung infection and then numerous lung clots in both lungs which now I have to inject myself possibly for the rest of my days with blood thinners. And now to top it off. Have numerous lesions in my liver as well as increased pain everywhere. I can't believe this has happened within a month and was gold it was because of the afinitor. I freo very angry I have gone from being optimistic about my life expectancy to wondering if I will be alive by next Christmas.
Because I had a good response to abraxane before Afinitor, I am being put back on it in 2 weeks providing the infection in my lungs is not giving me too much trouble. I am leaving on a cruize 2/2/14 and was hoping I would be well for it, but the way I am feeling now has me worried as I feel sore all inside and am wondering exactly what is going on. But I will say the abraxane was very kind to me apart from loosing my hair, so hopefully you have the same experience. I would like to keep in touch with you if it's ok, as I feel we are in a very similar situation. Regards, Gail
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Gail, have doctors explained why they changed drugs when you were having a good response? Maybe it was too harsh? You had such a hard time with Afinitor! I really haven't had it too bad, although I suspect it isn't working anymore. Also I've been on just 5mg the whole time. I hope you're feeling better for your cruise. We are thinking about a cruise in the spring if I feel well enough.
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Thank you Gail! I hope you get to go on that cruise. If it were me I would go anyway, I find that when I push myself I am usually glad I did. We only have one life so enjoy it!! And yes, please keep in touch!! I'm rooting for you. We all have up and down days. Please don't lose faith or hope. Maybe I'll come visit you next Christmas. I love Australia! I was just there in Hayman Island and Sydney in November. Beautiful!! Take care of you. You just motivated me to go for a walk when I felt like taking a nap. I need some endorphins. XOXO
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Good question Mary! I have no idea why I was changed, I was given the impression Afinitor was going to be some sort of miracle pill that I would be able to be on for years and as very lucky to get it under compassionate grounds. I will ask her next appointment. Yes I was on the 10 mg and thought I was doing ok considering and then boom, it all went haywire. Apparently you can have that response from any chemo is the impression I was given, so now I will worry about what I am given that's new lol. Also everyone seems to be getting only a few months out of afinitor and as I said I was told to expect years.
Jess , that would be lovely if you come back to see me on the Goldcoast!, I am sure we will have a wonderful time.
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I'm back on Afinitor after a 2 week break to heal the mouth sores. Wrapping it in a small amount of marshmallow and after 10 days, no mouth sores and not quite as chemo foggy. I sure hope and pray my peritoneal tumors don't like this combo and just die! I don't know when I'll get another scan.
I really want to go on a cruse too. We are celebrating our 40th anniversary in March, but I think I better wait until scans are done before planning anything.
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Danishgirl, I also have a peritoneal tumor (and bone mets). I had never heard of tumors in the peritoneum until I got one! I've been using marshmallow cream around the Afinitor the whole time (3 months), and have had only 3 small mouth sores.
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MaryLW, I guess you and I are really unusual. I think only 8-10% ilc mets to abdomen. I'm really hoping the A/A combo turns out to be a miracle drug for all of us.
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My MO grudgingly admitted that mets to the soft tissue of the abdomen aren't quite as bad as mets to a vital organ, so I felt a little better about having mets to an unusual place!
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Looks like I will be joining you next week. I've had a progression on Faslodex and Femara. Scans show many of the original lesions in hip, spine, and shoulder are larger and now there are new lesions on my skull and ribs. Sure hope this is my magic potion to slow this crap down, and hopefully without too many SE's! I'm looking forward to learning more about this combo in the coming days.
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I will be stopping this group for now. I started Affinitor in may end 2013 but a scan yesterday showed many new glass,like nodules which may be sign of infection and inflammation or mets. I have no symptoms of lung mets. I see a pulmonologist on Tuesday who will decide if I need a procedure to determine if I have mets or pneumonia. Either way, affinitor is not working. Hmmm...I wonder why we never talked about Xeloda being the culprit. My lung mets were stable and some showed regression on the previous two scans on this drug. My onc wants me off Affinitor till I do repeat Thorax scan in four to six weeks. I was taking Afinitor with Xeloda, Herceptin, tykerb and Zometa. Just be careful of Lung infection on this drug.
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