Afinitor/Aromasin
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I am so sad to hear aboutI Naturegirl2. I must not have been keeping up on everything because I didn't know she was even close to this point. I know she had some chemo switches a while back but didn't know how bad it was. She was such a bright ray of sunshine on these boards.
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Anyone has tried afinitor twice? It worked great for my mom in 2014 and her doctor switched to something else because the cancer was not completely gone and the doctor wanted to wipe them out. Now after several medication tries, the only thing left is trial and I wanted to see if reusing afinitor is possibility. Anyone had same experience?
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LA, It was an infuriating conversation, particularly because she led off with that, never mentioned the reason that the ascites were never considered, just said again I should go to the ER and then the whole rest of the appt. was a lot of wha, wha, wha........My husband sat there paralyzed, I couldn't even look sideways at him for fear we would both crumble. Thankfully I will meet my new team soon and think carefully about port placement and the power port. Would like to eliminate as many sticks as possible. Have a wonderful time in Paris!
JFL, the treatment I got at this new hospital so far has been so comforting, compassionate, friendly, direct no nonsense action. The Dr who treated me very kindly said that I should not have to put up with the inconvenience or discomfort of waiting around the er and immediately set me up with a GP and Gastroenterologist for Monday morning. He said I should be able to get immediate out patient treatment anytime this problem restartsI The first time I felt listened to in such a long while. I hope it continues as it will change my world.
RIP Naturegirl.......
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Wow artistatheart, that is one intense conversation you and your husband had to hear. I am so very glad you changed hospitals and team. Being listened to is a huuuuuge thing, and I hope it continues and changes your world as you say. Wow. Thank you so much for coming back and sharing this with us.
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amarantha, Now that I am transitioning to a new team I can't believe how fast and decisive they move here. Next week they have me scheduled for a new CT, MRI, port consult, gastroenterologist consult (which I feel my old Onc should of done way earlier on). Yesterday I met with a new GP who listened to everything and was so sweet and sympathetic. She immediately started with how my well being is doing and what do I need for help in that department. It was soooooo refreshing and relieving. So I pray this is a new beginning that will bring me a lot farther than if I had just stayed with the old. I hope to check in with the old Onc a few years down the road.......
I hope your treatment continues to do you well for a very long time and thanks for listening!
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That is sooo good to hear that you are being cared for now, Artist, my friend. I am impressed with how quickly they got things set up for you.
I got very good TM results today. Xeloda is working great for me.
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Artist, Glad you have it all in place now!! It is very stressful changing MO's with all the passing of medical files and so forth. But I have to say a job well done!!
Shetland, So happy to hear the great results and glad X is working for you!!!
Robin
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SP - yahoo to X working for you! Any HSF? Robin - how are you doing? Artist ditto what Shetland said - we care for you too! Come join me on Abraxane in August. :0 We will have great oncs and get through this. Kimh8 never heard of Afintior twice. Once was enough for me. Meow.
() Claire
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Hi Claire, I had my Carbo today and now I hope it is running through my blood doing major damage to the demon cells!! So far side effects include sweating, dry mouth, dry eyes, slight headache. Nothing I can't handle!! I am taking Zofran every 6 hours round the clock to avoid nausea, and I am so prone to nausea. It worked for me last chemo!!
Just sent you a PM.
Hugs,
Robin
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Shetland, It is time you got some great news! I was pretty surprised how quickly everything happened as well! I do have to give some credit to the old Onc as she got all the balls rolling initially.
Haha! Claire, once was indeed enough for me. That was just a super weird drug. I quite it almost 3 weeks ago and still have a dry slowing healing rash all over, super itchy....
Robin, One thing that does drive me nuts is the dry mouth as it changes the taste of everything for me, I guzzle water all day long but it doesn't really help. Everything just tastes stale or off. I may ask for some anti-nausea too as the ascites causes a lot I notice. Been forcing myself to eat small amounts of food every few hours.
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Lovely Robin, glad you handled your carbo. Let's get a little more weight on you too. Thank you again for your port pic
I hear you on dry mouth and dry eyes. Shetland - best news ever. -100 is my kind of number. Artist - I am so proud of you taking this on. I am very dry after leaving A behind - especially a dry mouth. I have lost more weight too, so got cute shorts for my trip over the weekend at Bloomies sale. Take that cancer! I'll revenge shop. (()) Claire
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Haha! good idea Claire! I think I will too when I get a little more energy back, look for my mother of the bride dress!
Met my new Onc on Friday and so far liked him very much! He is from India and was so very thorough in reviewing everything in my history, listen very intently to me, asked me my goals and desires. Most importantly he made me feel as if we are in this together and he is going to do everything in his power to recommend the best things for me. I start Abraxane probably Monday....
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Artist I like very much how you describe your new oncologist. We should all have someone who does as you describe.
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Thanks, guys! It's so nice to have friends to share the good news with. No hfs so far. I find Biotene moisturizing mouth rinse helps with dry mouth. It is part of my morning and evening routine, and sometimes midday, too. Artist, maybe your old onc knew she had messed up and ought to facilitate your transfer at least.
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Thank you for your reply and I will look look into this further!
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I do think that in a way too Shetland. I always felt like maybe she was a bit indecisive in her next approach but she always left it up to me ultimately. O sort of like that my new guy is very decisive and sounded like ha had a whole plan lined out before I got there. Not that I don't want to be part of the decision but sometimes it's so overwhelming, it's nice to feel confidence on someone else's recommendation.
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Okay I am here to report that my regular doctor thinks my swollen left leg and swollen left arm, plus the tendonitus in my right elbow, and tendonitus in my groin, plus the huge cyst in my forehead, plus my fingernails turning into ripped paper -- are all effects of the Afinitor, that swelling arms and legs is a known side effect, and so is the fragilisation of tendons.
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My goodness, Amarantha! Will you and your onc consider a change because of all this? Is Ibrance + letrozole an option for you? Faslodex? Xeloda? Every treatment has side effects of course -- in my mind I call it the "side effect du jour" -- but you have to consider which ones you get and what you are willing to live with.
Artist, that's how I feel. I want to be involved in my care, but I also want to have confidence in my onc. I don't think it is fair to make the patient decide things. My first onc (whom I fired) used to say when an important decision had to be made, "It's up to you." What? Doctor, you are the one who is supposed to have the training and experience to provide an expert opinion. I like that my current onc is confident in her recommendations, and is also willing to discuss my ideas. She values my opinion and intuition, yet will push back and explain if she has a better idea or knowledge that I don't. I came up with the idea of Faslodex plus Afinitor, and she agreed. It didn't work for me, but we have the comfort of knowing we tried the best combo for my situation before moving to chemo. When she suggested Xeloda, I asked about Gemzar because the side effects sounded better, but she had good arguments for X so that's what I went with.
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I do not know if my oncologist will be open to considering anything else but I'm seeing her in a three weeks. All of these extra symptoms started after my pneumonia end of May. I do not have a good relationship with my oncologist, and am frustrated - feeling like I have to do battle for myself to be taken seriously every time we meet.
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Amarantha, I hope you can find some relief. Having a not so great "chemistry" with MO can make the situation very difficult and frustrating. This Afinitor is definitely an odd one.
I have an appointment with MO in a few days, where he will schedule me for a 3-month PET to see if Afinitor is working. Feeling nervous. I have had some liver pain which means something is going on. Just hoping that something is dying mets and not exploding mets. I have no idea. I have been trying to decide what I would want for my next treatment if this doesn't work. I switch meds very rapidly when I have progression because the beast is aggressive when it is active. There is no time to think after the PET results come in.
Hope everyone else is doing well.
LALady, are you back from Paris?! Pics please!
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Hi JFL, Amarantha, SP and any "graduates" from Team Afinitor - I am back from my one week cruise on the Seine from Paris to Normandy. I ate like a french couchon and did not spare any butter! Fell in love with Rouen and La Courrande where Julia Child was inspired to become a chef. Also visited the US Utah and Omaha beaches where so many young men perished. So sad. A final visit to Louis Vuitton included a wallet and shoes - why not? Best prices ever due to falling Euro and they served champagne! Please don't put off any travel - this trip was very hard on me as the pain level from my jaw met increased exponentially. So glad I went! On to Abraxane. Will keep you posted. Below are pics from Monet's famed and oft painted gardens in Giverny outside Paris.
Dragging myself to work today.
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LaLady, those pictures look so heavenly, so calming! I am glad you had a great time. Exchange rate and VAT refund are excellent reasons to pick something up in LV!
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Oh Lalalady, those pictures are indeed heavenly. I LOVE Giverny. Thank you so much for sharing those moments of beauty with us !
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Beautiful photos, lalady! Amarantha, I'm sorry that your onc is not hearing you. Do you have options? JFL, not knowing what is going on is so hard. When is your PET scan?
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SP! My new onc is fine, she wants to burn down the house for about 6 mos on Abraxane (assuming I tolerate it). I start in the big chair on Tuesday along with cold caps. My sister is driving to my appt with me, starting 3 weeks on, one week off. If I have issues; then goes to 2 weeks on, one week off. That's it. No "Julies" in the big chair. lol Very glad I went and spent in France. Wishing all on Afinitor the best, but if it's not working, please switch!
(()) Claire
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Hello all!
It has been a few weeks since I have been online. For some reason my cell phone would not let me log on. Now it works. Trying to catch up with all of you.
LALady1. your pictures made my day! They are so beautiful. I felt like I took a trip. If you are still looking for a pulmonary md, I just found on I adore!! Out of the Towers at Cedars. He is amazing. Great bedside manner and in the best practice at Cedars. I know you are at UCLA but thought I would mention it.
Girlwuthacurl, I will be at treatment on the 15th if you are up there. I wrote myself a not to tell Phil I met you.
Artist..so glad you found new Onc that is partnering with you.
Shetland..I know you got some good news but I can't go back and read or I lose my attempting to post.
JFL. Here's to Afinitor being a great med for us!!
Afinitor.. was on 2weeks of samples and it went great. Then insurance denied it and wanted me off Foasodex and on a different inhibitor. We challenged and won. 2 more weeks of samples. Still all good. Finally got perscrition filled and first week I got one mouth sore. I totally think the samples are different. I know this not to be true but I did feel like I ruled the world with no mouth sore. Swishing to prevent now. If this is the worst SE. So be it.
Amarantha, sorry you are having SE. Praying they all go away soon and you feel better. Hope your Onc listens and partners better. Be brave
I know I am missing some of you please know I pray for all of us every night. I hope that does not bother anyone. I respect every on their beliefs so just know I am sending you some positive thoughts.
Wondering if any of you have had night terrors? I fell asleep when I got home from work and had a terrible night terror. Could not wake up and yet my brain was trying so hard to tell my mom, wake me up, I can't wake up. I finally woke up and I'm still here and awake. Now very awake. LOL
Went to my MD that handles my psychosocial issues. He has helped so much. Adding an additional medication to help with all that is going on. I will know soon if it is going to help with how I am feeling. Keep you all posted. I stay pretty positive most days but one day sneaks in and boom.
Ok, will try to come on more often so it is not a novel in the future. :-) You all keep me going.
Thanks for sharing !
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Well, I received my PET results and have liver progression. Super disappointed. Add me to the list of "Afinitor failed me". I am feeling scared and trying to figure out what to do next. My MO is thinking liver biopsy (finally!) and either weekly Taxotere, NCI basket trial - I would already qualify for the FGFR1 arm, possibly other arms after liver biopsy, Doxil,or taking an already approved FGFR1 treatment for other cancers off-label - ponatinib or pazopanib.
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JFL - so sorry to read this. I'm headed for Abraxane - please explore all your options. You are a strong lady and we need you here. The liver biopsy may help you and your onc make some choices. Please keep us posted!
(()) Claire sending gentle hugs and kind thoughts
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JFL... I am sorry Afinitor failed you. Praying there is a better combination for you up next. This road we are all on is scary but we are strong and here together to keep trying till we find one that lasts. Sending you strength and positive energy!!
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I haven't checked in here in quite awhile. I was getting ready to start Afinitor. It's been quite the journey.
My MO started me on 10mgs. 15 days after I started it, here come the mouth sores. And they were awful and painful and just not acceptable and the dexa mouth wash did nothing to help them not be so painful. I stopped taking Afinitor.
Fast forward a couple of months later. Sores have disappeared and this time I took the time to break the pills down. A month's worth of 2.5mg, a month's worth of 5mg, and then the 10mg tabs. I put them in gelatin capsules that I buy in bulk from Amazon. I take them with a bottle of water after I've had my breakfast.
One of the things I have been careful about is the texture of things that I put in my mouth. Even the manufacturer recommends this. So things like potato chips and other things that can damage the inside of my mouth are no longer in my life. Oh, how I miss a chip heavily laden with french onion chip dip...
The first month I was very disappointed to find that even at 2.5mg I developed a mouth sore. However, it was not huge and seemed to heal fairly quickly. I'm now 3 weeks into the 5mg dose and have not had another mouth sore but am experiencing severe fatigue. There needs to be another word for that elephant so eloquently called fatigue. Another week on 5mg and I will go to the full dose. Then I will go back to see the MO - it'll be time for another scan and I can report on my progress (or lack thereof) on getting onto Afinitor.
I am very sad to read that so many of us had Afinitor fail us. I hope it doesn't fail me. To the best of my knowledge, I only have mets in my bones. If it really does keep progression at bay I would be thankful, but I sure hope the fatigue gets better because I can barely drag myself out of the recliner. I went to the gym yesterday and walked a mile on the treadmill just on sheer determination. It took a long time and it was not pretty. Then it was home to the recliner and a delivery of pizza for dinner.
Is there anyone who has been on this for a longer period of time? Sure would like to hear about some success stories. And I'm terribly sorry for all of us who did not benefit from this drug.
And the cost of this drug is FREAKING CRAZY. Thank goodness the manufacturer has a program.
Hugs to all,
JJ
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