Abemaciclib Verzenio for Stage IV
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The site for Enobosarm only accepts crypto-currency or bank transfers. It also said, "SARMs products are being discontinued and will no longer be restocked once sold out."
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SusaninSF: The dosage of 9mg was determined in a clinical trial that compared 9mg to 18mg. They found both doses worked, but they got better results with the 9mg. One must be very careful in sourcing Ostarine, as it is often faked or under doses. There are a small number of companies that have a really good reputation, with independent testing of their product. From what I've read, in the USA, the best brands were Science Bio and Chemyo. We bought Science Bio. They are ending their sales of sarms, and will only have to sell what they currently have in inventory.
We either paid by credit card or e transfer. Can't remember which. We certainly got the product.
Haven't ordered from Chemyo, but they have a good reputation, 3rd party testing, and they do accept credit cards.
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Ordered from Chemyo since they had a credit card payment option through MESH.
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Dear Shetland Pon,
Thank you for your response and feedback. Perhaps my low albumin and low protein resulted more from the chronic diarrhea than the nutrient deficient low fiber diet?? Like you I started taking SL B12 and after one month my level improved and I feel better. I also eat fermented foods, but in small amounts (1 -2 TBS) - more than this seems to provoke diarrhea. I sometimes take psyllium powder for the soluble fiber (as several women report doing), but I'm still not sure if it helps or not. The brand I use is Yerba Prima as recommended by Consumer Labs which rates it as low in lead. My oncology pharmacist says to space psyllium or any fiber supplement by two hours before or after medication to avoid reduced absorption of the medication. I also take a probiotic and switch between brands to get different combinations of organisms. I think the probiotics have helped with the diarrhea. I just got the OK from the oncology pharmacist to take OTC pancreatin (amylase, protease, lipase) digestive enzymes. Pancreatin is porcine derived. There are also fungus derived digestive enzymes that include more than just amylase, protease, and lipase but the pharmacist will not give the OK to these because they lack sufficient information about them. I just started the pancreatin, so will see if it helps with my low serum albumin and low protein. I do not think the pancreatin has made the diarrhea worse. I like your idea of eating papaya as a source of a natural digestive enzyme. Thanks again for sharing.
Wendy
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Cross posting with Liver thread;
Scans showed stability so Verzenio must be working! Subcapsular liver tumor that I'm still not certain is cancer changed shape but not volume, 1.8 x 1.1 cm previously 2.4 x 0.8 cm. Anyone else see this kind of shape change in just two months?
Hugs, Susan
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SusaninSF - I don't know about shape change, but my largest liver tumor shrank to about half the original size in 3 1/2 months (13.7cm to 7.9cm on PET-CT).
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SeeQ,
That's fantastic! Thanks for sharing.
Hugs, Susan
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Hi Susan: Hope Verzenio is working for you and the shape change is a good sign I started Verzenio almost a month ago. My insurance didn't want to cover it because I had already been on Ibrance a couple years ago but the drug co. is getting it for me. I see that you too had been on Ibrance in the past. Did your onc. feel that it would work for you on a different way that Ibrance did? Some think that a "holiday" from that type of drug can make you responsive to it again.
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Hi everyone, I finished radiation today, and the plan is to start abemaciclib in a few weeks. It's been helpful reading about your experience. I'm nervous about the side effects, but hoping we can manage them.
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Thanks, elenas401!
Last year, I had the same experience with my insurance company, BCBS of MA, refusing to pay for Verzenio since I had already been on Ibrance. Strangely, they said they would pay for Ribociclib which is more similar to Ibrance. This year, I switched to Cigna and they approved Verzenio. I didn't think of asking the drug company to give me the drug. Great move!
I didn't have a lot of confidence that Verzenio would work but it's my only remaining non-IV choice. Someone mentioned that it might work if you have been on Piqray in between. So far, so good.
star2017,
I found the advice at the top of the thread to be very helpful. Diarrhea is usually the worst SE with Verzenio. It is also the worst in the beginning and many people, like me, adjust to it after a couple of months. These days, I take 2 Imodium in the morning and I'm usually good. If I have diarrhea, I take another 2 pills. I also have to avoid acidic or spicy food. Dairy seems to be hard to tolerate.
Wishing you the best!
Hugs, Susan
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Star2017,
I'll chime in on diarrhea control while on Verzenio. Like SusaninSF I found the advice from Constantine Kaniklidis at the top of the page very helpful - much more helpful than the advice I got from my MO team. I was told to follow a low fiber diet, but this turned out to be terrible advice. I now eat normal food that is nutrient dense. Like SusaninSF I avoid spicy and acidic foods. I gave up all caffeine - coffee, tea, etc. (BTW, I was told by the oncology pharmacist that chamomile tea is contraindicated while on Verzenio). I tolerate lactose free dairy just fine or take a lactaid tablet. As others have reported I take a probiotic supplement, but plan to transition to fermented foods only - things like sauerkraut, kefir, yogurt. I take powered psyilium sometimes (it's a soluble fiber), but still not sure if it helps with the diarrhea. I take one imodium either daily or every other day. And it's important to stay well hydrated. The best to you.
Wendy
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Hello,
Just to say I was on Verzinio and it worked for 2 years. The tummy issues were a real problem but I was told to research “ FODMAP" which stands for "fermentable oligo-, di-, mono-saccharides and polyols" If you google that it tells you what foods are high or low in fodmaps. So for example spinach, strawberries, carrots, blueberries are low fodmap so ok to eat, but cabbage or peaches are high fodmap so not ok. It's not restrictive as plenty of nutritious foods are low fodmap. It's designed to help people with IBS and it's to do with how our gut breaks down certain foods. Have a read as it really was a game changer for me while I was on this drug.
Also you can ask for dose reduction if it's very bad.
Hope you get a long time out of it, I was sad to have to come off it.
Xx
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Mermaid007 - you bring up a good point. I've been on Verzenio for a year and a half and knock on wood am doing well on it an maintain NED status. I'm curious, how long have people been on Verzenio? I couldn't seem to find a consistent average amount of time. You mentioned 2 years. I am hoping to get at least that and hopefully more since I have done well on it.
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I'm wondering how long people have been on Verzenio if they were previously on Ibrance. I was on Ibrance for 20 months. Not expecting the same kind of duration of response for Verzenio.
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I'm also interested in learning how long people have remained stable on Verzenio. My oncologist told me "on average 2 years". I've been on 2 years now (just started week 105). My next scans aren't until Sept which is a 4 month interval since last scans.
I found this statement on the website Drugs.com regarding how long women took Verzenio in clinical studies: "In this study done by the manufacturers, Verzenio allowed patients to live longer without their cancer getting worse. Verzenio, when added to an AI, delayed disease progression for over 2 years (a median of 28.2 months) compared to 14.8 months when using an AI alone." (AI = aromataze inhibiter)
Mermaid007, thanks for the suggestion to look into FODMAPS for dietary suggestions.
I had recently added collagen supplement for it's gut healing effects, but just read that collagen is not recommended for breast cancer survivors: https://marnieclark.com/are-collagen-supplements/. Ugh! I will stop the supplement.
I got the OK to try digestive enzymes (protease, amylase, lipase only). I started a low dose OTC and feel my stomach pain is less. Maybe it's been pancreatic pain, not stomach pain? Hope the digestive enzymes help correct my low albumin, low protein and "floating stools"....and most importantly don't cause harm. I see a GI doctor end of the month.
Everyone's comments are so helpful.
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Husband. I purchased Ostarine from Chemyo for my wife and there were no issues. I had questions about shelf life and storage. They were quick to respond that shelf life was 2 years, and simply store at room temp. My wife hasn’t started yet, as we are awaiting another round of tumor makers, but I’m curious if you are dosing continuously or cycling? My understanding is that it should be dosed continuously like an AI. Any early freed back? Results, side effects, etc
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"Husband. I purchased Ostarine from Chemyo for my wife and there were no issues. I had questions about shelf life and storage. They were quick to respond that shelf life was 2 years, and simply store at room temp. My wife hasn't started yet, as we are awaiting another round of tumor makers, but I'm curious if you are dosing continuously or cycling? My understanding is that it should be dosed continuously like an AI. Any early freed back? Results, side effects, etc"
She is taking 9 mg per day, continuously, and has seen an unexpected drop in tumor markers last month. No negative side effects, her energy levels are significantly increased and she is doing more physical activity and has less fatigue. Can't say for sure its the enobosarm / ostarine, but it certainly hasn't done any harm. Her liver enzymes are within normal range, with the exception of ALT that is slightly elevated. That, was something we anticipated might happen with the enobosarm, so we aren't concerned.
Target dosage per day is 9mg, as the study showed that 9 mg was actually slightly better than 18 mg, and had less side effects. That is a pleasant change from most cancer treatments where they dose high. 9 mg is a very mild dose in the bodybuilding world. Lower than anyone would recommend for optimal results in building muscle or performance enhancing. Another good thing, as enhanced "athletes" are often extreme risk takers.
The beauty of this substance is the good chance of it helping, low risk, negligible sides, and the fact it strengthens the body and bones. After years on aromatase inhibitors, something that fights osteoporosis is a good thing.
As the liquid enobosarm is a little funky tasting, my wife puts the drops into a glass of water and drinks it.
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Thanks...I suspect we will be starting this quite soon as well.
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Hi everyone. I am due to start Verzenio this week. Do you recommend waiting to see what side effects hit, or do most people take the imodium as a preventive?
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Hello star2017,
I might wait until first symptoms, at least initially. My oncology pharmacist told me diarrhea would typically start at 3-7 days after starting Verzenio and after about a week of management should improve. I didn't follow Constantine Kaniklidis's protocol, noted in the message at the top, but it seems pretty reasonable to me now in retrospect, including his suggestions for adjunct interventions like probiotics. I think I was overly timid with the imodium at the start because I worried about ending up with constipation, but that never really happened to any extent. I have always responded well to imodium and this has been reassuring....it seems to take effect within a few hours. I do experience abdominal cramping just prior to my bowels emptying - once empty then the pain stops.
I only recently become more aware of the problem of stomach pain, feels like "acid stomach", as distinct from abdominal pain associated with diarrhea. I had no stomach pain the first 18 months, but do now. It's mild and intermittent. I use TUMS, ginger tea, and if I'm really uncomfortable Pepcid AC 10mg.
Good luck with the Verzenio. Hope it goes well for you.
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Star2017, there are some people on this thread that never had a problem with the big D, others that had pretty severe cases, so I would wait. You'll just have to see how your body reacts. I have used GasX in addition to the Immodium, and that helps with the cramping. Immodium plus includes the same active ingredient as GasX.
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Hi everyone, so for ladies asking how long ppl last on Verzenio, I only lasted 5 months on it. Came off of it July 1st. As I have some prosthesis on in my bones and now some liver mets, so. I did not get very much time in it. I was in Verzenio with letrezole. Who knows, maybe it was the letrezole combined w it that didnt help. So I will be moving on to afinitor with faslodex. Good luck ladies and husbands. Hugs.
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Hopfull, I'm so sorry about your progression and relatively short run on Verzenio. It's so frustrating that these drugs work so well for some, and not so much for others. Best of luck on your next line of tx.
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I had bloodwork done yesterday and was waiting for the ok to start Verzenio. Just heard that my liver function seems off and they want to run more tests.
I'm scared.
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Hello Husband 11,
I understand that your wife had Ibrance treatment for many years and now is changing. I am looking for testimonies of people who took Ibrance and then changed. My onco told me that if Ibrance doesn't work anymore, I will be given Chemiotherapy. It seems to have other alternatives. I have also other questions posted in the topic: "How long with Ibrance?" Is it possible to share your wife experience to help me and other women in the topic "How long with Ibrance?" ?
You seem to be a great support for your wife which is admirable!
Thanks a lot!
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Lili75, I will have to get back to you with the precise answer as to how long she was on ibrance & letrozole before her tumor markers started to consistently rise, then she switched to verzenio and exemestane. I know it was at least 2 years, but I will have to wait until she is home to ask her exactly how long. The verzenio plus exemestane slowly lowered her tumor markers. Imaging never showed progression, but we feared that was coming. After some time on the verzenio plus exemestane, we lowered her verzenio to 1 pill on day, 2 pills the next, and added in enobosarm, and have seen several months of consistent drops in her tumor markers, the latest being most dramatic of 30 and 40 percent drops.
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Husband11: thanks very much! If I understand well, the onco decided to switch treatment from Ibrance to Vernezio because tumor markers increased (to what extend, what was the peak?) before imaging showed progression. It is valuable information because other oncos wait for imaging progression before changing treatment.
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I have a question about labs. I’m not scheduled for any lab work. Today is day 14 for Verenzio. I thought labs were supposed to be every 2 weeks initially. I have my 2nd and 3rd injection of Faslodex scheduled and don’t see the oncologist until September. I had a Pet done last week which he has not even looked at yet. Should I be concerned? There is a bone met and a large tumor on the portal vein and vena cava that he is not aware of yet.
This brings back bad memories from my initial diagnosis about all the mistakes that were made. I had to be my own advocate and double check everything or the system would fail me. I had a friend drive me 75 miles to get my port implanted only to find out that the onc’s office never sent a referral and that the procedure wasn’t authorized. I remember countless visits to the lab only to find no authorization and paperwork and having to be sent away. At least the cancer center now draws their own labs.The phone for medical offices are also a problem. They are all answered by voicemail with a complex system to navigate. Sometimes I get disconnected.
It’s only the beginning and I’m so overwhelmed and exhausted
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Lili75 wrote:
Husband11: thanks very much! If I understand well, the onco decided to switch treatment from Ibrance to Vernezio because tumor markers increased (to what extend, what was the peak?) before imaging showed progression. It is valuable information because other oncos wait for imaging progression before changing treatment.
Lili, I think the Onc would not have been able to get her Verzenio if there was concrete evidence of progression. I think the Onc was likely able to justify it on the compassionate patient basis as the switch being because my wife had low blood counts on palbo / ibrance. I suspect that was the technical justification, but not the real motivation.
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Kabuki, I'm not sure about the Labwork, tho I think my mo said she'd check labs every two weeks initially. It's very strange that the doctor hasn't checked your PET! Is there any other cancer center near you or another doc you can see at this practice?
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