Abemaciclib Verzenio for Stage IV
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@threetree I do carry on, don't I? Sorry! It really helps me to write these things out since I haven't even really thought about Xgeva since my first injection.
I think through all that I was really wondering if anyone else is on Xgeva and if they have side effects.
@goingtobeatthis I'm glad you have no feet issues. I am not so lucky, and now I am very aware that healthy feet are very handy to have.
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Dulcea - Nothing at all to be sorry for at all. I think maybe I should have written what I did a bit differently. I think it's really good that you don't have side effects and really appreciate hearing about it, as it gives me (and I presume, others) some hope. There are others who take Xgeva and I think you might find them by looking at the bone mets thread or using the search box at the top of the page, plugging in "Xgeva".
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@dulcea - I have painful feet, but my the MO I had in Florida explained that was a SE of the Anastrazole. Faslodex might be the culprit in your case. For the most part, the pain is only for the first several steps after sitting or lying down for awhile. It used to be just 2-3 steps, now it's about 10.
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Thanks @threetree. That makes sense that people with bone mets would be on Xgeva since it helps with bone mets. See? I keep learning from these boards!
@seeq thanks for sharing. I think I need to go back to the podiatrist. This feels like I am walking on rocks all the time. Probably just old lady feet.
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If I am having PET scan every three or four months, do I need to go to the gynecologist yearly and get a pap smear every five year?
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@dulcea thanks for all of the bone strengthening info. I am not 100% but I believe I will be getting Zometta. I only know that it will be one that I have to get dental clearance for before I take it. Why do they choose one over the other? Does anyone know? I guess I can look into it. My oncology teams won't offer up that info unless I ask so I'll do that at my next appt. Good for you on arthritis and joint pain going away. An upside to hear is refreshing. I don't have any feet issues on Verzenio. Yet.
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I started my new 50mg dose of Verzenio today. I decided to take it with my Letrozole and my seizure med in the morning, and then again with the seizure med at night. My thought is (as twisted as it may be) that I do not want to give it any special attention and then maybe it will not bother me. And I am drinking water like I am walking across the desert. I feel just a little peaked. I am keeping busy and even went for my first walk in 3 months this morning! So far I do not feel nauseas and crappy like I did by this time on the 150mg. I am going to see radiologist tomorrow for skull mets. Hope to get that addressed quickly. And then cavaties filled Wednesday so I can decide if going to do bone infusion in July or not. Pet scan and bone scan soon - am slightly nervous. @dulcea I have no idea about your yearly gyn. I have a yearly visit with my primary care in June and I am going to keep the appointment. Will be interested to hear what she has to say after my 2 years of asking her what she thought was wrong with me, with all my varied symptoms. I think the cancer was there the whole time. Not her fault but I wish I had done a little more pushing with my cancer center P.A. and with my nuerologist, etc. It's all in the past now so can only go forward. @dulcea I know what you mean about writing this all out. I keep a really detailed log of EVERYTHING, every appointment, etc., but I do like sharing hear to get feed back. @intolight did you get your liver MRI and results yet? Hoping the very best for you. How is everyone else doing?
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dulcea, You might ask your MO, but since I had a hysterectomy many years ago, mine tell me no. I have not seen a gyn since my cancer dx. My PCP is not concerned to do an exam. Also, I have bone mets but have been on Zometa for eight years with no problems. I am careful to check with my dentist every six months but so far no problems.
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OK. To answer a few of my own questions that other people might have too.
- Yes, we need to have a pap smear every five years because PET scans only pick up things greater than 8mm or there abouts. Cancer cells in our cervix are very tiny and a scan wouldn't pick that up. A pap smear would though and you want to know about these things when they are tiny. Going yearly is optional since they only do paps every five years. -Per my MO
- Bone scan vs Pet scan: I was wondering why a bone scan picked up mets on my skull but the PET scan didn't and I was wondering which mode trumped. It seems the brain is full of glucose and the PET scan lights up things that are full of glucose. That's why they are concerned about diabetes and why we can can't have carbs before our scans because carbs turn into glucose. So when they look at a PET of the head, the a lot of it is lit up so if there are any mets, they won't be obvious. So a bone scan (or other mode) trumps over a PET scan for the head. So I most likely have/had skull mets. -Per my MO
- Verzenio bubble packs: Verzenio is very sensitive to moisture, even in a typical, temperature-adjusted home. That's why they are in bubble packs. The pharmacist said that it is OK to cut around the bubble packs but they don't recommend popping them out prior to taking them. like I do. So nope, they don't come in bottles either. It's my opinion that they should write this on the packs.
@marcials1 how is it going so far on the 50 mg? HOw have your headaches been? Any better?
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@dulcea - thank you for the info about keeping verzenio in the blister pack. I was not aware of that. I will never take them out of the bluster pack prior to taking them again. I have done that (and put the pill in a plastic snack bag) for hours whenever we were going to be away from the house and I knew I had to take one.
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Well at least a plastic snack bag keeps a lot of moisture away. I've done that too.
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@dulcea Hi - thanks for asking about the headaches. They have mostly faded. I met with radiologist last week and he wants to hold off on doing radiation on the skull mets for now. We'll watch them and check again in a few months. And I did start the 50mg Verzenio and so far so good. I'll find out soon if there is much reaction to the 50 vs 150mg. I wonder when they decide to PET scans. I seem to have bone scans, CT's and MRI's. I'll ask at my next onc visit.
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@marcials1 I'm glad your headaches are better. It makes things easier to deal with I think when you don't have chronic pain going on.
I had a PET after my CTs and bone scan because I had developed an armpit swelling in the cancer breast side and they were concerned that my MBC has spread to the skin level. The PET did actually pick up more MBC in a lot of my chest lymph nodes, sternum and scapula, and I'm not sure why the bone scan didn't. The issue with my inflamed armpit turned out to be a bug bite that became infected. That was scary!! Antibiotics helped with that.
So I'm not sure that everyone has a PET scan. That's why I had one. I know my insurance tried to fight it each time because they suggest I can have a CT or bone scan etc. instead. My doctor got it through both times and I haven't had any other modes of radiology. I think certain modes see certain things better. So yes, it's a question for your MO.
I'm glad the verzenio has been nice to you so far. Hopefully it takes down the all the mets.
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@dulcea I had mostly PET scans when I was with my original MO in San Diego. When I moved to Colorado, this MO switched to CT scans. I think it has a lot to do with insurance, yes, but my MO here has done both when needed. She says different scans pick up different things. The MRI I had done Tuesday picked up multiple lesions in my liver that didn't show at all on my latest CT or a previous PET. It scared me, but my MO says after conferring with other radiologists that they have been there all along and are tiny and just sitting there stable. and only show on an MRI. I am having to learn to be patient and wait for MO input since she is diligent in checking all angles.
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@intolight interesting that the CT picked up the liver lesions. My MO also told me that a PET will only pick up things greater than 8 mm. So maybe your lesions are that tiny, which is good. Regardless, you are still doing well whether or not you know you have those additional lesions. And that's great you have confidence with your MO.
For me, I do wonder why the bone scan didn't pick up the lesions on my scapula and sternum but the PET did. Of course, my brain also thinks the worst and that maybe it spread that fast within the two weeks between the two types of radiology. We need a radiologist on here to answer our questions. Or even one that is available locally for us to ask questions. It seems like a frustrating part of our journey.
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I’ve never had a PET scan. I get CT and MRIs. The CT picked up liver mets, lung mets and a lesion on L4.
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@dulcea glad that the inflamed armpit was a bug bite! Bad timing on the bug's part! Every little thing that I feel now I think it's a new issue. The headaches turned out to be sinus and allergies. I try not to get pessimistic but it's hard not to worry with this cancer. I'm still confused on when we get the different scans. PET vs CT vs bone vs MRI. I have a follow up oncology visit tomorrow so I'm going to see what they say. I wonder why insurance doesn't want us to get the PET. It would be nice if a radiologist or oncologist jumped on here occasionally to answer our general questions. @AJ interesting that the CT picked up the liver and lung mets. I guess that may answer my question on PET vs CT. I'm always learning from you all. I have a question for anyone - does anyone have major sleep issues? Not just a little sleeplessness but severe insomnia? And if so, what do you do about it? Thank you!
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@marcials1 I have been having severe sleep problems for a couple of years. My MO prescribed Restoril which I can take sparingly as it is addictive, but it works the best for me. I have been on it for five years. I only take it when I know I need to sleep like the night before an appointment, etc. I see a PA on alternating visits for my MO and she told me to take Melatonin which doesn't work for me anymore, but used to. It is the safest. She also said I could alternate with OTC Unisom, but it leaves me a bit groggy in the am which I don't like. I sometimes take 1/2 Benedryl. It works without making me groggy but it takes awhile for me to fall asleep. Hope any of this helps. No matter what I take I wake up feeling not rested most days. My eyes just always feel tired.
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@intolight Thanks for that information. Wow - a couple of years? I have some days I cannot function from complete lack of sleep. Sometimes up to 3 or 4 nights of almost no sleep at all. Literally 1 or 2 hours per night. And I know we need the sleep to help our bodies heal and to deal with this cancer. I wish Melatonin worked for me but it doesn't. I do meditation, breathing techniques, sleep app (Calm), etc. but none of it works. I've had on and off bad sleep history over the years but what I am dealing with right now is a first for me. I have Tramadol left from initial pain and when I take one is the only time I get solid sleep. I do wake up with a bit of a headache and grogginess too. But I know that I cannot keep taking that because of the addiction factor. I have a pain management meeting next week so I'll hopefully get prescribed something that works. Maybe Restoril will be prescribed. I do think that since we have so much else to deal with that we should be able to take whatever is necessary to get a good nights sleep.
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my palliative care doctor prescribed Ativan which works really well for me. I only take a half. I had a phone appointment with one of the nurses today and he said that it’s totally habit forming, which I knew but don’t really care. But I’m going to taper back and switch to Benadryl. He said that maybe we should discuss other options.
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Friends, do your research on benadryl and related medications. It can cause dementia. Personally, I think I'd take addiction over dementia, but that's just me.
I think PET scans are probably more expensive and that is why my insurance tries to deny using that mode. I don't think they'd get involved if it didn't have to do with money.
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I'm hoping I can get a prescription for something that works for sleep and I don't care at this point if it is habit forming or not. If I put Verzenio, Letrozol, Keppra and Zometa in my body then I want something that helps me sleep. I'll still do all the other things like meditating, exercising, eating healthy etc. and I need to find an accupuncturist. What good are all of the above drugs if I walk around crying like a zombie because I have only slept 6 hours in a total of 4 nights. It is not healthy obviously. If I take a tramadol I sleep great but I know those are being taken away. So I try not to take it.
About the PET scan being more expensive and insurance not paying for it for that reason is what I was guessing. But because it is more expensive is it more thorough? Just wondering if anyone knows.
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Trazadone is a medication used for sleeping that is non addictive . My mother in law had terrible insomnia and it works for her . It was originally used as an anti-depressant but works better for insomnia .
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Thanks @aprilgirl1 I took Trazdone about 5 years ago for a short period of time for anxiety. I quit it just because I didn't want to be on any kind of medication. Thanks for reminding me about the insomnia side of it though.
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@goingtobeatthis I think it was you who had very, very bad diarrhea after taking a break from verzenio. I seem to be having the same problem.
I did experience some diarrhea from verzenio initially and then when I got used to it, I was only taking Imodium once or twice per week instead of every other day. It was very tolerable. In April, I took a one week vacation and things were still OK for two or three weeks after starting back on it again. Then it started getting worse again and now I am taking Imodium twice a day! I have diarrhea 4 times a day! I never had it that much before. Oh my!
This could be compounded by the fact that after gallbladder removal, people experience diarrhea until your body gets used to your bile going directly into your small intestine, and my understanding is that it only lasts a few weeks to a month. I am almost 8 weeks out. I just don't know if it's from the lack of gallbladder or verzenio diarrhea
My question for you is whether or not it has calmed down again. I can't live like this!! I hate it!!
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@dulcea Yes that was me. Sorry to hear you are going thru such a hard time. Hope is resolves soon.
After I restarted taking my BioK+ regularly twice a day, got back to drinking a lot of water every day and watching what I was eating make diarrhea stopped. As I said before, I will never take a break if I have any say about it. 🙂
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Thanks @intolight. I do think this is from the Verzenio and not the gallbladder.
@going2beatthis what do you mean about your diet? I already eat low fat and I try to stay away from too much dairy. What else do you do? I drink a TON of water but I have trouble with probiotics and wish I could find one that works for me. Thanks for sharing.
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Here is a link to the supplements that @going2beatthis was mentioning, @dulcea.
I looked into whether there were studies on Bio-K+ and its use for diarrhea available. It has been used to prevent antibiotic-associated diarrhea for children on the studies I skimmed, so perhaps that is why @going2beatthis experienced relief?
Here were a few of the studies that I think were the most interesting.
"Strain-Specificity and Disease-Specificity of Probiotic Efficacy: A Systematic Review and Meta-Analysis" (2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5949321/"Choosing an appropriate probiotic product for your patient: An evidence-based practical guide" (2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6306248/"Probiotics for the prevention or treatment of chemotherapy‐ or radiotherapy‐related diarrhoea in people with cancer" (2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6513393/0 -
Dairy - use only plant based products (cheeses, milk, yougurt, sour cream. etc)
Pasta - use only ones made from beans, vegetables or brown rice). Like Bonza and Explore Cuisine altho there are other brands.
Sugar - try to avoid refined sugar and eating vegeatables that convert to sugar such as corn and white potatoes. Love sweet potatoes. Use either monk fruit or coconut sugar when I bake.
Meat, eggs, Poulty - Eat free range, no antibiotics added
Fish - try to eat only fresh not farmed raised
Alcohol - gave up when I had to go on meds (which by the way are the first longterm RXs I have ever been on). Recently, I found a great Dealcoholized New Zealand Sauvignon Blanc by Giesen. Even the sommeliers on our recent cruise agreed it tasted so close to the alcoholic version that they couldn't tell the difference.
When I first started on the aromatase inhibitor I found the following article about foods/supplements to eat/avoid .
As for the probiotic I use, it is called BioK+. I like the bluberry on that is dairy and soy free. It is a "drink" in a small bottle. I drink 1/2 before breakfast in the morning and 1/2 before dinner. My sister discovered it years ago when she had chemo for earlt stage breast cancer.
I realize that not everyone can do this but have found that all this has worked well for me in keeping the diarreah away. Some of the things above I had done prior to my diagnosis and decided to make other changes after.
Good luck.
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