Unfortunately things are going downhill
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Goodness Sue, sure sounds like you have been through a lot this year too. Hopefully we will all find what works soon. Praying for e
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praying for you and sending positive energy your way.
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kandy- are you a candidate for abemiciclb or palbocicib at all?
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I'm not sure, what are the qualifications
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kandy- they are both approved drugs that are considered targeted therapy. They are oral. They are similar and so far used in people with HR+ Her2- disease. The palbociclib needs to be taken with a hormonal - usually letrozole or faslodex (monthly shot) or other hormonals. The abemaciclib can be taken with a hormonal or not and supposedly crosses the blood brain barrier. Abrmaciclivwas approved only about a week ago and is apparently appropriate for people who have had multiple drug failures. I would read up on them and discuss with your MO. I think Lilly is the drug co for abemaciclib- they have said the drug is free or $10 for a year “if qualified”. Otherwise these are pricey drugs- what else is new.
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Does anyone know the date that Abemaciclib hits the market. My MO sent a script in to my specialty pharmacy, and I told her I heard it wasn't available until the end of October. She said no we can get it. Well she was wrong.... because I called the pharmacy and they can't get it right now and they were not sure what date it will be available. I have read great things about this drug!
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rpoole1962 - the press release from Lilly says it will be available mid October 2017 but doesn't give a specific date. Hurry up and wait. It's just our lives here.
"Verzenio will be available in the U.S. by mid-October 2017. Lilly will work with insurers, health systems and providers to ensure patients are able to access this treatment. Patients, physicians, pharmacists or other healthcare professionals with questions about Verzenio should contact The Lilly Answers Center at 1-800-LillyRx (1-800-545-5979) or visit www.lilly.com."
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Being on Medicare makes you ineligible for the Verzenio saving card/program. I tried to read/understand the eligibility requirements and my head is spinning.
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Thanks AnimalCrack for the info!!! HURRY UP LILLY!
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kandy, animal crackers is right, things can turn upwards and fast as down. Holding you in my prayers!
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Thanks for the words of encouragement. I still haven't heard anything as far as rather I can take keytruda. The more I read about it, the more nervous I get. They say only 20% benefits from that drug. The odds are sure not in my favor. I wonder now why he thinks that I might respond. Does anyone else have an idea. Holding everyone up in prayer.
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Kandy - Have you ever had genetics testing done? Do you have a high tumor mutation burden. If so, you have higher odds of responding. If you haven't had genetic testing, he may be guessing your TMB is high based on your current presentation which would be reasonable.
I believe that you are getting radiation. Radiation can stimulate an immune response that Keytruda can take advantage of. It's possible that that the radiation you are getting is already the right thing but I would consider some questions to the right people on your team about this potential opportunity. If you get interested in this, radiation geared towards provoking an immune response is Stereotactic Body Radiation Therapy and it is a specialty within radiology. Consulting with a specialist would be the way to pull this string.
Z
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Z, I had genetic testing in 09, for BRCA. I was negative for that. I had stereotactic radiation to my ileum in 2013. Which I did well until 2015. I'm just concerned that I'm going to take another drug that does no good. It's impossible to know what will work. I'm worried that it is going to be resistant to everything. Definitely in a scary place. Prayers for everyone.
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Kandy - I have been following your thread and deeply saddened that you are in this situation.I am sure you will recover soon and leave these horrible times behind you.
Have you considered the TIL trial (Tumor Infiltrating Lymphocytes) ? More details at https://clinicaltrials.gov/ct2/show/NCT01174121. It is a kind of immunotherapy and unlike CAR-T, it is being offered to ER+ BC patients. Of course it is not for the faint of hearts but since you are getting resistant to quite a few treatment options at this time, I believe it is worth checking out. The timing is also right since you are now between treatments, which is a criteria for getting into the trial.
Wishing you the best.
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Kandy- Strongly supporting the above trial, this team with Rosenberg has a number of trials going on, some are CAR-T therapy that is targeted to a specific cancer protein, so if your cancer tests positive for mutation or over-expression of one of those proteins, then they would move you in to that trial. The big potential upside is it can have amazing results, as evidenced by that MBC patient who is in remission more than two years now and taking nothing for her cancer.
Regarding the low response to immunotherapy- usually those numbers are for immunotherapy alone, and the benefit goes up if given in combination with another treatment (chemo, drug, radiation), or if given in combination with a different type of immunotherapy. Also, as cancer mutates more and more to be able to grow around the drugs, it becomes more aggressive but also more readily recognized as aberrant by the immune system and therefore might be more responsive to immunotherapy. So your odds of responding may be greater than the numbers you read about, on the other hand of course it might do nothing- this is the black magic of deciding which dugs to take when no-one can say whether or not we will respond. On the pro side, the side effects are low and potential for meaningful benefit , if you do respond, is high.
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Kandy -
Thinking of you today. How are you feeling?
Praying for you that you are enjoying your day and for God to place his healing hand on you.
Sending big hugs your way.
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kandy, I've been thinking about you too. Have you come up with next treatment yet? I pray too that you are doing well and enjoying the day.
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Hello ladies, sorry it has been so long since I have written. I think it's a combination of physical and mental distress. I really haven't felt well lately. If it's not one thing it's another. Sometimes my back hurts worse than before rads. Literally breaking into. Then I'm still having stomach issues, since I came home from the hospital. I either feel nauseated, and vomiting with it, or it just hurts. Feels like I'm full all the time, so full that it's in my throat. This morning was bad, not a piece on me didn't hurt. I sat at the end of the bed crying, told DH just to go ahead and bury me. By the afternoon I did have it better controlled. If this isn't depressing enough, I'm having trouble getting new treatment lined up and I just know cancer is having a big party as we waste my time. Tumor markers are now over 4000. I seen MO this week, he told me he still hadn't been able to get keytruda lined up. After discussing some options I asked him why we hadn't tried Ibrance. For some reason he thought we had. Maybe because I just cruised through my options. Anyway, he did feel like it was worth a try especially since we don't have keytruda in place. So I started Letrazole but still don't have Ibrance. Mine has to go through cvs specialty pharmacy and they still haven't approved it. Just seems like nothing works out smoothly. Hopefully I will get it soon. I hope everyone is doing well, keeping everyone lifted in prayer
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Kandy- I’m so glad you are going to start the Ibrance and hope it works well for you. I find the 100 mg without many side effects. I don’t know about the SEs of letrozole since I am on faslodex. I’m glad you advocated for yourself. Seems like we all have to know a lot about our options since this is a fast moving field of drugs these days. The oncologists where I am are starting to subspecialize since the speciality is getting so complicated.
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Kandy I was thinking of you. Thank you for taking the time to write. Praying things fall into place quickly.
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Kandy, you are in my thoughts and prayers. I will pray harder that this pain eases up.
Claudia
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Kandy, you are in my thoughts and prayers. I will pray harder that this pain eases up.
Claudia
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Kandy, so sorry you are feeling so poorly. I pray the Ibrance combo brings you relief. Honestly, the time I was on the Ibrance/Letrozole combo and the Ibrance/Faslodex combo was when I felt my most "normal" with MBC.
Please take care and update us when you feel up to it. Big hugs to you today
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Praying for you Kandy. I am on 75 mg of Ibrance with letrazol and am tolerating it well and it seems to be treating the cancer. Hope everyone gets organized quickly and tomorrow is a better day. Once it is approved you should be able to have the drug in your hands quickly. Hugs, Keep us posted when you are able.
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Praying that you feel better soon and the new treatment works quickly! Sending hugs
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Oh Kandy, I hope tomorrow is better. I'm glad you are going on the Letrozole/Ibrance combo. I think you will see those TM's go down pretty quickly. It was a fairly easy combo for me too aside from a lot of fatigue. I reduced the ibrance to 100 then 75 as I had issues with elevated liver enzymes. But then I stayed on it for over a year. Keeping you in my thoughts and prayers.
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Thank you ladies. I feel better today than yesterday. Woke up in the middle of the night deathly I'll. Couldn't stop throwing up, or stop diarrhea. I had asked my MO about this a couple weeks ago. He didn't know what was causing it. It seems like now I'm doing it once a week. I get very sick then become sleepy. Can't wake up. Literally I just about sleep till the next morning. Any suggestions as to what's causing it?sending love and prayers to everyone.
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Kandy I hope that ibrance comes very quickly! It's so frustrating, the stupid mistakes and doing everything the hard way it seems. My tumor marker wnr up the whole time I was on it, but it worked very well for 16 months according to scans. Before that the markers were very reliable, so don't stop or give up on it too soon!! I don't know about the tiredness but sometimes I could easily sleep the whole day and night. I think out bodies just need it. We heal the most when sleeping.
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Hi Kandy I had 3 weeks of nonstop vomiting and diarrhea a couple of weeks after I finished Adriamycin and Cytoxin 2 years ago. Docs couldn't figure out why. I lost 25 pounds. Then one nurse suggested taking a probiotic (capsule form). She said your GI system just gets trashed by chemo and all good bacteria is gone. I was better in 3-4 days. Had the same trouble a couple of weeks ago on Xeloda. Everything went right through me for two weeks (constant diarrhea). Lost another 8 lbs. I asked and asked MO if I could take a probiotic. Nurses kept telling me to go to ER for fluids. I finally decided to go ahead and take the probiotic "on the sneak". I was better in 3 days and resumed normal eating. It might be worth a try.
Hope you get better soon. I'm praying right now for you.
Mary
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another thought - could you have picked up the C. difficile infection from the hospital
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