Afinitor/Aromasin
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Nkb, it was my choice to return to Afinitor since I had only given it a 2 months trial. I am just now thinking that I don’t know if it is even working. Perhaps my MO will order a scan soon. My appointment is next Thursday. I must add to my decision about Afinitor.. I felt that the doctor seemed to be urging me to abandon the hormonal and go up a step to a chemo pill. He left the decision up to me. I’ll rethink this after a scan. The doctor did say .....not be be afraid of chemo.....and that I might even like it. ...??? Maybe he feels that way since I’m really having a bad time on Afinitor and I’m only on my 2nd week. Any comments will be appreciated. Does anyone know anything about chemo pills. Is there just one kind or others as well? Wishing everyone health and healing. Na
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Yes, the washout period will be over before I fly to NYC. PTL. I've been off AA for four days now and won't start Xeloda until I get back from NYC. February 18. She says dosage is based on height and weight? Never knew that. So she thinks I will take two pills in AM and PM. Two weeks on and one week off.
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Grannax, I've also been following your story and am so very sorry that A/A was such a rough treatment for you. Unfortunately, your experience with Afinitor does not appear to be unique. I remember when Claire (lalady) coined the term "a-phony-tor" after a difficult experience on Afiniitor. Do you know whether you received any benefit from A/A while enduring the awful side effects? If it was effective, could that mean that alpelisib might be effective in the future?
I just completed my 4th cycle of Xeloda (chemo pill also known as capecitabine). My schedule has been 2 weeks on and 1 week off at 3000mg/day. Hand and foot syndrome on my feet has been my main side effect. I've felt well on this treatment. I'll scan in a couple of weeks to determine whether or not it is working. My oncologist wants me to try A/A next, so I really appreciate you and everyone posting about their experiences. I hope that you will have a long run with mild side effects on Xeloda!!!
Thanks! Theresa
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Teresa 45. Thanks for taking an interest in me. That means a lot to me.
No I don't know if it did any good. She is not planning to scan until April. Discouraged.
But I hope ill feel better in a week or two.
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Grannax2 I've been here for a couple of months and I would like to say how much I admire your courage. Your inspire me to be strong. I also have been having problems finding treatments that work. Praying for you HUGS
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Nancy- I’m still a little perplexed why MOs seem to like it so much and patients seem to have such a hard time. It does make sense that it should work given that it is targeting the mutation that those of us who have failed hormonals and CDK drugs most likely have (PI3K). I am getting a second opinion and plan to ask a lot of questions about the drug. I just heard a podcast where the MO said if you use the steroid mouthwash there is very little GI toxicity- but, Grannax and others have lost weight and had big elevations in their sugars as well. I do think that MOs worry that we will fail each of these drugs eventually so if we can get 7 months from this one and 2 years from that one we may hang around long enough for the next great drug around the corner.
I am hoping you are one of the good stories I am looking for.
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I have now been on A/A for 3 months (with one 9 day break). After all of the initial misery with side effects, most things have stabilized. I no longer have mouth sores...knock on wood, and my weight loss has been stable at 27 pounds total. Fatigue level has decreased also. Unfortunately, my blood sugars shot thru the roof and I'm now on insulin (I have type 2 diabetes). Kidney function is lower than it should be so my endo doc has me checking blood sugar every hour for 10 days. So far, my sugar has not gone below 200 at any time, even while taking insulin. This may very well end up being the deal breaker. This same doctor looked up the info on Affinitor and she told me that not only does it raise blood sugar, it can cause diabetes in people who have never had it....I'm not sure what is worse; the cancer or the elevated blood sugars that can obviously affect many different organs.
Wondering if there is anyone who has been on the combo for a more lengthy time who may have had elevated blood sugar that stabilized after a period of time??
Take care all of you wonderful ladies!
MM
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I am trying to stay on AA for as long as I can, but if I get another stomach issue (gastritis) I think that will be the end of AA. It seems like we manage for 2 months and then have to take a break for 9-14 days. I'm back on now for 2 weeks and already have mouth sores, stomach cramps and loss of appetite. I'm wondering if I'll lose another 20 pounds. Has anyone had favorable results from a scan? I'm so waiting to hear that the struggle on this drug is worth it . MO was leaning toward chemo pill, since the hormonal keep failing. I long for thr arimidex days when I easily became NED.
While I was at my last hospital clinic I watched hundreds of ladies, over a 9 year period, coming and going from the infusion room. I was surprised to see that the majority had all their hair and came out of the room chatting on their cell phones and planning to go out to lunch or shopping. Maybe we shouldn't be so afraid. Many are on just a maintence infusion and doing well.
I just cheered myself up and hope it cheered you a little. If I hear any new positive chemo stories I'll let you all know.
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MM, I had a blood draw at my new clinic and I don’t think I had elevated sugar. Of course it was after a month break from AA, so that might effect the results. Hope you get improvement and are able to stay on this drug. We are all in the same boat, just waiting for the next shoe to drop. It would be bad if any of us developed a more serious condition. I wonder sometimes how much our bodies can take. So much can go wrong. Hoping and praying for good health and good decisions
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Grannx, I've been following your story as well, and I seem to br following along your same path. Glad you are getting a little break before Xeloda. My mo wants me to try it, and it's sounding like a better idea each day that I feel sick on AA. I'll be thinking of you and eager for your messages about xloda. Have you heardany good success stories from people already on the drug?
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Nancy there's a lady who has been stable on X for 4 years. I was on it for 1 year and many take it longer than that. The biggest prob is hand and foot problems but depending on dose you may not even have that. I felt pretty good on it except for tiredness, which I expect with every treatment.
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Nancy, I am one who feels good on Xeloda, just tired, which as HLB says above seems to be the case with every treatment. My hfs is mild enough not to cause suffering or prevent me from doing my thing. Getting the right dose and schedule is key, in my opinion. I like Xeloda better than my previous Ibrance + letrozole and Afinitor + Faslodex. Xeloda took me to NEAD quickly. I have been on it for over 1 1/2 years. So I consider it a success story and I hope you will be another one!
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I'm feeling better each day that I'm off AA. Yesterday I ate like a horse, first time that has happened since January 1, 6 weeks. I ate an Apple that tasted like an Apple, how fun is that? My weight has been stable for two weeks. My brain seems to be better, my mood is better, my energy not yet. But I'm not through with the washout period yet.
I have another friend who has been stable on X for 4 years. In fact she's the founder of Say Yes to Hope. Her quality of life is amazing. She's a jet setter. Flies every week, sometimes twice a week. She's a speaker and writer. She's a wife, mom and grandmother. She organizes all of our trips for survivor models. We go to NYC February 15, the Oscar pre party is the next weekend, the Emmys are in May (im going to that one too.) Suzanne Lindly stage IV survivor= jet setter. Read about her.SM GLObal Catwalk Surviving in Fashion. I have a u tube video too. Vicki Miller Medlin. Dallas show October 4. Say Yes to Hope!
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Grannax - I'm happy to hear you are feeling better now that you're off A/A. May Xeloda be easy and effective for you!
MM - Sounds like you are doing better as well, though your blood sugar sounds concerning. Hope it stabilizes soon. I'm thinking this may not be the best tx for those with diabetes. When you restarted A/A after your break, did your mo order a lower dose?
Nancy - I have never had any kind of chemo and am terrified of the "big chair". Your description of lots of ladies coming and going for infusion with all their hair and plans for the rest of the day cheered me up too! Hope this second attempt at A/A gets easier for you, but if not, Xeloda sounds like one of the better options.
Shetland , Theresa, and HLB - Thanks for the good reports on Xeloda, it is very heartening to hear that some do well on it for years rather than months, and with good QOL.
Nkb - I agree with what you said about trying to get a few months from this drug and a year from the next one while waiting for a new and better drug to come around. My MO is very by the book, so I expect Xeloda will be next (when A/A fails) for me too.
My body seems to have adjusted to this tx so far. I had a blood draw this week and all my blood work looks normal again. Mouth sores have been minimal so far and I am still able to live pretty normally. I hope I don't come off as an insensitive jerk by saying I'm doing okay when everyone else seems to be having such a rough time. I am only 1 1/2 months on Afinitor, but would like to give others starting this tx some hope that it may not be horrible for them.
Wishing everyone tolerable and effective TX!
Jo
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Hi all, I've had a pretty easy run this past seven months with A/A. It's kept liver tumors stable with mild side effects, fatigue and recessed appetite. Ibrance failed after six months as well as Xeloda... I'm grateful for the past months and am hopeful for seven more! It seems that we are in this together and I'm grateful to hear about anyone's tumor regression or stabilization when QOL is good too.
None of us asked to be in this club, that I know for sure.
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greentea and Jobir- glad to hear some happy stories with this drug! Thanks
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Nkb and Jobir- I got good news from my scan today! No progression and a bit of regression in largest liver tumor, 2.0cm down to 1.8cm! I had been nervous since last month when tm's rose from 50's to 60's. Afinitor SE remains fatigue only. No mouth sores in the past few months. I take a women's 50plus vitamin/mineral pill that gives me needed push each day! I'm grateful today! Wishing all good days to come.
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Greenteatwo- that is great news! Are you doing a steroid mouthwash to prevent mouth sores or you just haven’t gotten them?
What dose and labs do you do
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Greenteatwo - That is great news! Sounds like you are due for some after Ibrance & Xeloda failed you so quickly. And so much the better that your only se on this combo is fatigue. Hope you have yourself a little celebration.
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Nkb- I rinse with the dexsamethasone in the morning and before bed. I strutted on the 10 mg dose but the fatigue was severe. My MO reduced the dose to 5mg which I've taken for the post 9 months.
Jobur- I'm still giddy!!
Grnte2
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I had my UCSF second opinion and have decided to try AA. There is some evidence that it is more effective after failing Ibrance- but, who knows. The doc said that with the mouthwash and a very flexible attitude about lowering the dose if too much fatigue or other problems- she has had good luck with it. I am going to try to be good about a low carb diet and a 12-14 hour overnight fast to help with the blood sugar issues it causes. I don't have diabetes.
Any other advise from people? Who is still taking this combo?
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Nkb- I am still on this combo...4 months now. I must say the first few months were horrible but things have leveled out now. Other than my blood sugars...I am diabetic and am now having to take insulin. Even with that, it's hard to keep it under control. Scans in early April so hoping for the best! Andy btw, I did decrease the dosage of Affinitor to 7.5mg. I think that has helped a lot....
Hope all goes well for you!
MM
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Nkb...also be mindful of the weight loss. Seems like it's fast and furious for most people during the first couple of months....
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Nkb, I'm still taking A/A. I also failed Ibrance earlier in my tx history. I'm on my 10th round this month. I started out on the10 mg dose and due to significant fatigue, the dose was reduced to 5mg. There's still some fatigue but managed with my multivitamin! I did experience one mouth sore about a month in. I continued used the mouth wash as prescribed and in between rinsed with a mild baking soda and salt rinse. The sore healed in about 10 days. I experience very dry skin and use a lotion called AquaCare because it contains urea and does a good job moisturizing. I've experienced a rise in glucose level and am watching my carbs more closely. I'm doing some research on Metformin and Bitter Melon as a result. I plan to discuss the use with MO at next appt. I also experienced a rise in blood pressure during the past two months. We decided to start a 5mg dose of Amlopadine.
Scan results 2/21/19 indicated a slight regression in the main tumor being measured- from 2.0 cm to 1.8 cm. I'll take that! It's such good news, to us!
There's many up's and down's on this health journey. Grace and strength to you.
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Greenteatwo and Masonsmama- thanks! The doctor seemed to think that all the dosages were equal in efficacy, so I am going to not let myself suffer if the 10 mg is too much. My MO says that fatigue, flu-like illness is the most common reason to decrease. Stable or regression is the goal.
I took metformin for a few years at the beginning, they are doing a study to see if it prolongs progression free survival, I didn't get the GI effects people get, it is generally very tolerable. High BP is one of the problems I haven't had, but, will watch that. My MO said mouthwash four times per day for 8 weeks then can decrease or stop and see how it goes.
Seems hard to go with a low carb diet and not lose weight.
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It is nice to hear that some people can tolerate and respond to AA, my onc says she has had some patients do very well on it. The phase 1 trial on Alpelisib, which hits the same pathway and has some of the same SEs, showed that it works best if the cancer has a PI3K mutation. One of the patients who has responded the longest thus far (beyond 2 years) had previously responded to everolimus. So, if you have success with the AA combo, it could be that Alpelisib will also be a good option in the future.
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Hello everyone, I mostly read and dont post as much. You are all such a source of inspiration for me and this forum is the only place where I can find solace sometimes. I am one of those people that responded well to afinitor and was NED for 3.5 years. The main side effect I saw was mouth sores, but I was able to manage them very efficiently by taking a probiotic everyday. If I stopped or forgot the probiotic for even one day, the sores would come back. Aside from that I found it very do-able. I work full time and lead a pretty active Iifestyle and afinitor was my easy drug. I recently had a recurrence to a mediastinal lymph node and am currently on Ibrance. I have been on it for about 7 months and tumor markers seem stable. I had both the P13K and FGFR1 mutation before I started on afinitor. I do worry though that this means Ibrance will not work for too long but am hoping for the best.
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I also started taking probiotics so maybe there is something there....?
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Nkb-it wasn't the low card diet that caused my weight loss...it was initially the lack of appetite and mouth sores. My appetite was about non-existent the first 2 to 2 1/2 months, but it is back to normal now. Wishing you no serious SE, but if they do occur, just try to stay the course....it will get better!
MM
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masonsmawmaw, I was told to start probiotics by a General Practitioner who said that some targeted therapies tend to mess with the flora in the digestive lining. Probiotics help reset that balance. It made logical sense to me and there was no harm in trying but I can swear by them, they definitely worked for me! If it wasnt for that, I would have come off of afinitor. I coudnt eat and was losing weight the whole time. Possibly related but I could always eat yoghurt and I wonder if that was due to the good bacteria in yoghurt? I recommend trying a probiotic for anyone thats just starting out and is dealing with mouth sores. One thing though, if you already have sores, Id check with your onc to see if you can stop for a few days until they're gone (while taking the probiotic - definitely used to clear them up faster) and then re-start the probiotic and afinitor.
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