Afinitor/Aromasin
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Oh Shetland, thank you so much for sharing your story. It is really pretty astounding the role that your intuition played in this. What a relief that the Taxol did its job. Can your long hair grow back ? Were any of your doctors sheepish about having missed it for so long ?
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Yes thank Shetland for the response. It was beyond frustrating talking on the phone to the Np. And I already have evidence of "stranding" in the peritoneum so she knows nothing obviously. Even after the NP talked to my Onc all she did was prescribe yet another laxative. When i went to the ER they did an XRAY of my lower quadrant but I don't feel that was sufficient to see what was really going on. The Dr. who saw me said he had "very little experience with this issue" and seemed almost amused......I am calling today but dread it. I haven't eaten much because I'm afraid to "bloat back up" but now my energy is in the dumps
Your story interests me too as 2 years ago before I was DX'd I woke up in the middle of the night with a giant weird pain in my right side. It almost felt like a big rubber band had snapped me in the side. Went to the Dr and they had me see a nurse practitioner. She asked a few questions from across the room then rather condescendenly said "You probably pulled a small muscle in your rib cage". I was like really? How would the happen and why the sudden sharp pain in the middle of the next. 2 years later liver mets...
Amarantha, I stopped taking the Afinitor 5 days ago and the rash is slowly clearing up.I hope to get on a lower dose today. I just used the prescription mouthwash and did not have too much of an issue with mouth sores although a little. Plus I constantly feel dehydrated even though I drink water all day long so my lips are sore and flakey. I still have zero appetite. The only things I have found that taste normal or good to me so far are salsa and ketchup!
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Hello ladies! Back from my Baltic cruise with the highlight being 2 days in St. Petersburg (also the only 2 sunny days). Amazing sights - Hermitage and Catherine's Palace (with the famed Amber room) were stunning. Here is a little preview. I visited Helsinki the first day (pretty architecture) and walked 4 miles seeing the Hermitage, 2 miles at the Faberge museum and then got pretty tired, but who cares. Go for the gusto on any big trips you are planning.
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Wow! Fabulous lalady! What a trip. If we aren't bankrupt after my daughters wedding and husbands back surgery we are going somewhere!
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Artist - to quote a fav poet, gather ye rosebuds while ye may. Don't postpone your happiness - please plan a fab trip! Buy insurance (I did) and keep that plan in mind. It's fine to pay for your daughter's wedding, etc., but you need a break too. So sorry DH needed back surgery. Wishing him a speedy recovery and a nice holiday in the not too distant future. I will be in Paris/Normandy in 3 weeks on an epicurean cruise and tour. Tres yum.
(()) Claire
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Ooo, Aaah, pretty pictures, lalady! And "epicurean cruise" certainly has a nice ring to it! "Don't postpone your happiness" makes a good motto, along with "Carpe diem".
Amarantha, I transferred my care from the doctors who failed to recognize the need to check for liver mets, and I seldom deal with that NP. I would like to say here that I am not dissing NPs in general, just saying that some of them need to remember where the line is and not diagnose over the phone or go beyond their expertise. My own NP that works with my onc is an absolute gem. She always responds to me quickly by phone or email in a helpful way whether it is about scan results, side effects, or whatever. She is a wiz at getting stuff approved. She is a sweet person that I really like, and I am lucky to have her as my NP.
Artist, I hope you can find someone you like, and not have to go through such stress and frustration. It always floors me that we have such sophisticated medical knowledge in this time and place, in some ways, yet so often the individual patient-caregiver encounter goes wrong. By the way, best thing for those cracked lips, in my opinion, is Lansinoh. It is like vaseline but instead of a petroleum product it is modified lanolin (no allergens).
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Shetland Pony, it took me a while to remember that NP stands for nurse practitioner. I was thinking - "Named Provider" LOL. You were very smart to change to new doctors.
I'm having two new side effects (I guess they are side effects) - big swollen ankle --just one side) - obviously I'm retaining fluid - but only one one side ?? I'm wondering if anyone else is having problems with swollen ankles. The other new thing (side-effect of Afinitor ?) is crumbling fingernails. They are paper thin and crazy fragile. I keep cutting them short to stop them catching on things and getting worse, so now I have short short fingernails many of which are torn in five different places on the same nail half-way down the nail bed in five places. They look like the bottom of those "apartment for rent" posters on a telephone poll, where the bottom of the poster has a phone number written several times and pre-cut ready to tear off pasty dough. I'm trying all the imaginable treatments, including expensive protective nail polish "silicium" from La Roche Posay, which the oncologists gave me when I was on chemotherapy; iron supplements (gack), and getting a dishwasher. But after two weeks of no hand-dishwashing and they are worse than ever.
Lalady, Thank you for the lovely photographs !
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ahhh Claire. I live vicariously through you for now! I will plan that trip even if I have to cash out my retirement money. He already will get life insurance! Thanks for the good wishes on his surgery. Luckily it's not too complicated and out patient so hopefully he'll be as good as new soo
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Hi everyone
I am writing on behalf of my mother. She has Bone mets the last 4 years. She was on Xeloda and Xziva, the last 3 years, but through the last year the TM 15.3 went from 70 to 1120. MRI and CT didn't show anything, but she had a small ball-ish tumor on the skin which was removed with radiology. the Onc suggested to stop xeloda and to move to Afinitor and Aromasin because the TM were increased, the side - skin effects of xeloda were done and the hematocrit when from 33 to 29.
She started Afinitor and Aromasin 1,5 month ago but the hematrocritis when from 29 to 25, and it was dropping every week. then she stopped for a week and the hematocritis was stable, and started Afinitor and Aromasin and then it went to 24.1.
Do you have any similar cases? Do you have any suggestof how you can increase the hematocritis?
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Has my PET and contrast CT scan today. Will know soon which direction my meds will take me. Artist - plan your trips now and spend $ while you can still enjoy everything. Who wants to sit in bed counting a savings book and 401K and saying I wish.... SP - how are you doing on Xeloda? Seems like many of us on this thread wind up on X thread. sigh Meanwhile headed to Paris next Saturday. Bon Voyage!~
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Let's hope you don't have to wait long for results, lalady. It does seem like there is a typical path with X after Afinitor for many. Stefajoy said to just think of X as another pill. I am finishing my second cycle and having no problems other than a little tiredness. Knock wood. I've come to the same conclusion about wanting to spend retirement money now, but I can't seem to find anyone to help me figure out exactly what steps to take to access it and avoid the early withdrawal tax penalty.
Thria, I'm afraid I don't know the answer to your question. Perhaps your mom's doctor will have some suggestions, or maybe lower her dose? Good luck.
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Hello all - just back from UCLA onc who said Afinitor was a fail. I am anti-hormonal resistant now, but still ER+/PR+/HER-. Guardant 360 didn't add much details, but glad I had it done since insurance paid. Next step is to bring out big guns when I return from Paris (Abraxane) and move to Xeloda if I respond well to chemo. Whew, but nothing I wasn't really expecting. Afinitor was a total fail for me and has made some ladies worse. Those are my parting words as I switch threads and meet some new ladies. Good luck to you all, and may some of you have some long runs like I did on Ibrance.
(()) Claire
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So you were right about Afinitor not working. (Me too; I just left the anti-estrogens a few weeks ago.) Abraxane is indeed a big gun and will probably do a great job. Hopefully it will get rid of pain and get you to a safe spot, and then Xeloda will be fairly easy. Hugs.
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Claire & Shetland, I am sorry to hear you failed Afinitor. I was actually relieved when I stopped Afinitor because it was causing me anxiety about it damaging my liver and the lung infections.
Good luck on your new treatment regimens!!
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Thank you, rpoole, and good luck to you, too. Remember, we did not fail Afinitor. It failed us.
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Shetland, I stand corrected!!
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Wow - Shetland and Lalady, that's pretty intense. I am interested in hearing more about these Afinitor failures. Wow. Interesting timing too. I'm sorry that it did not work. Will you keep posting here and keep in touch with the rest of us ?
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Of course, Amarantha. Don't everybody be too discouraged; it has to work for some people! You know, trying my third anti-estrogen/anti-estrogen plus targeted therapy, I knew the chance of the cancer being resistant to it was there.
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I have to say I hate Afinitor and it certainly seems like I got worse quickly. My bronchial tube is sore with a mild dry cough, suddenly ascites showed up, the rash was horrendous, my appetite went in the toilet. I quit two weeks ago and have a feeling I will be moving to X as well. I hate to abandon it with out any real consensus on whether it was working but it was just awful.
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Artist, I also developed a hard dry cough on Afinitor and my chest so soar from all the coughing! This cough has been with me since May 27th. Sometimes my voice becomes raspy from the cough. I will be seeing a pulmonologist on August 9th. It is so miserable living with this cough and it does wear you out. So I feel your pain. My cancer also got a lot worse on Afinitor. My TM's were going up 40 points a week!! Thank goodness I am no longer on it!!!
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Artist, SP and RPoole - I renamed this med "A-phony-tor" for a reason. I had a dry cough too, but it did not reawaken my lung met which Ibrance killed may months ago. Afinitor did NOTHING for me. I wish ladies good luck on this med, but be forewarned - some of us got worse on this med. Looking back I would have gone straight to Xeloda. Meanwhile Abraxane awaits when I return from my Paris cruise. A bientot!
(()) Claire
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Claire, I will be started Abraxane as well as soon as I get a port installed. Afinitor completely failed me and was just YUCK. She doesn't think Xeloda is good idea right now, she wants the big guns out I guess. Good luck and I'll see you on that thread to compare notes. Have a lovely time in Paris!
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Artist, ask about getting a power port that can be used for scan injections, too. And try to talk to the interventional radiologist about placement. I did my first Taxol infusion without a port, then had the port done in time for the second infusion.
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Shetland, I got a power port and had it put on the inside of my left arm. It is so small that I don't even know it's there and yes it's great for blood draws, scan injections, and most recently my blood transfusion.
Claire, I love your name A-phony-tor...hilarious!! My lung mets completely disappeared from Faslodex/Ibrance, but after a-phony-tor there is minimal low activity and my MO thinks it's just the inflammation in the lungs from "A".
Artist, Did you ever confront you MO on the ascites and her lack of acting?
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Thanks Shetland that sounds like a great idea. Robin I did question the delay somewhat but she quickly launched into the situation at hand and before you know it we were over run with information and questions and sort of let it fade. She did tell me today that I am at the beginning of the end! Almost at the beginning of our conversation. Blunt and to the point. I thought my husband was going to pass out. I did not appreciate it at all. Can we candy coat it just a little like a spoonful of sugar? I've had a hell of a day. Anyway I am changing Onc's closer to my home and a bigger hospital. I start Abraxane soon and will ask for a power port. Yours doesn't bother you on the inside of your arm?
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Artist, I left you a message on the liver mets thread! Again I am so sorry you had to sit there and listen to that. I can understand the conversation slipping away, after hearing something like that. The port in my left inner arm is great...well if you have to have one!! I am very thin (107 lbs) and I have a friend with a port in her chest and she is just as thin as me. It looks like a growth and it is so much bigger and not a power port. I knew I didn't want it in my chest because I was afraid it would be so uncomfortabe due to my weight. The surgeon who put the port in, said I was skin and bones on my chest and no padding, so it might be uncomfortable. I never feel my port on my inner arm, I actually forget it's there until chemo day. At first when it was swollen I felt it a little but even then it did not bother me. You just have to find a surgeon who is experience in this type of placement. The good thing about the power port is the PA with draw blood from the port and then leave the short tube in for chemo. So only one stick the entire time and that doesn't hurt.
If you want to see a pic, just inbox me your email.
Hugs and prayers from Alabama.
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Artist, I am so glad you are changing oncs. You deserve someone kinder. And nobody knows your future. I know this isn't the port thread, but...I like that the port on my chest does not show with most clothes, although I wish it were 1/2" lower. It is not uncomfortable. I thank the skill of the interventional radiologist. Like Robin, I use the power port for everything. They can access it once for labs and leave it in for the infusion or scan.
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Robin sweet girl - will you PM me a pic of your arm port? I do not want one in my chest due to lower blouses, etc. Let's talk soon - wishing you the very best. Artist -wtf - that must have been a hard discussion today. I have been in tears losing Steph/Naturegirl2. Her onc finally told her it was near the end when she went to ER. She tried almost everything, and just wanted to keep her hair which she did. Gone too soon. Much love and gentle hugs to all of us sisters tonight.
(()) C
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LA, I am disappointed to hear about your progression. Xeloda is such a more effective drug. Please enjoy Paris before you start your next med!! The pics from your cruise are beautiful.
Shetland/Robin, what is a power port? They must not have been around when I did IV chemo 10 years ago.
I am feeling worried on Afinitor. My liver has been hurting me and feeling uncomfortable a lot lately, especially in the left lobe. My liver hurts when meds are both working and not working so I don't know what to make of it. However, given the failure rate seen in this thread, I am not holding out much hope Afinitor is working.
Artist, I hope your next onc is a good match for you. You deserve to be treated with care and concern and looked at like the fabulous woman you are with a beautiful family who loves you, not some number or statistic to be checked off on a checklist of appointments for the day.
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Well-said JFL. (to Artist)
As I understand it, an ordinary port can't handle the pressure of the injections of contrast or radio-tracer that are usually given through an i.v. before certain scans. But a power port can, so it saves you having to get the i.v.
I am thinking that if the liver pains happen upon starting a new drug, it could mean a flare reaction because the drug is working and killing cancer. But if the pains start up later and increase it could mean the drug is not working. This is just based on my own experience with liver mets, and who knows how it may be for others. Do you have a scan soon?
Lalady, if the port is in your arm, won't it always show unless you wear sleeves? With my chest port, I can wear a deep V-neck without it showing, but not a wide, low scoop-neck or cami. They really should involve each patient in the decision of where to place it.
I'm sorry to hear the sad news. My condolences to the family and friends of Naturegirl2.
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