Ibrance (Palbociclib)
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Candy, so sorry to hear about the difficulties with the new medication....I hope that your body adjusts or your doctor comes up with a better dosing strategy. You've been through so much. Hugs.
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Thank you for your sweetness, ShetlandPony. I’m just reading this now, and I called my doc’s office at 4:30 and told them I want to switch now and to do what they needed to before I get there on Monday. We think alike. I was trying to wait, but my husband and I talked, and I made the phone call. I just can’t go on like this. It’s getting worse.
You know how people have colon blockages when it’s in their colon? I’m now thinking I am having the same issue, but it’s in my stomach. There must be a blockage that takes place.
I really appreciate you so much.
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a-friend,
I have had the same issue after starting Ibrance. I’m on my sixth month and it hasn’t let up. My MO doesn’t think it’s due to Ibrance but I was fine before. I will have diarrhea for days and then have a break from it and then it appears again.
Denise
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I am relieved to hear you made that call, KBL! I know standard imaging does not show the ILC you have, but can they image your stomach to see if there is evidence of a blockage? To answer the question of how long you can afford to wait for the new drug to work vs. getting surgical intervention. (With my bile duct stricture, they could not see cancer there but they could see the stricture and gave me the stents to keep me going while the meds treated the presumed cancer in the area.)
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ShetlandPony, I did have a CT on August 30 that said gastric wall thickening. I did not realize when I went to the emergency room in April that that CT also said it, and my onc didn’t mention it then either. Another miss. It’s the first time it’s said that. I’m sorry if I’m repeating this here. I know I posted about it, but I can’t remember where. I asked my gastroenterologist about it in an email. He said that is a concern for progression. The radiologist also said it was hard to compare because my stomach was distended.
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Hello, sweet friends,
I'm sorry for the side effects you're feeling and pray for relief.
About my Lynparza experience: I had been on Ibrance 75mg with Arimidex for a long time and a scan showed slight progression. Because I'm BRCA+ and had been waiting years to see Lynparza approved for MBC, I jumped at switching. I took a month off Ibrance with my oncologist's wholehearted approval. We called it a "cleansing".
Just a few weeks into Lynparza, my oncologist was puzzled by the weird side effects. (This was no LIndy!) Not just nausea and fatigue but loss of taste, smell and appetite, general malaise and a cough to beat the band! I coughed so hard I burst my eardrum.
I asked to return to Ibrance, go back up to 100mg and switch to Faslodex.
Once all the news came out about Covid-19, I realized I probably had the virus and poor old Lynparza took the blame for the symptoms!
All this to say, I might consider another go at Lynparza should I have considerable progression. I have a scan next week and I'm expecting some extra uptake to the left in my Sacrum. I plan to see the RO about hitting that with some radiation.
I'm also thinking I'll take some weeks off everything for a Quality of Life break which I've done before. October 2 is my 5 year anniversary with the widespread bone mets and since the weather will soon be perfect here, I owe my husband some time out of this house!
For you new folks, I'm a 27 year BC survivor. coming up on 10 years of that with MBC. This is a survivable thing and we aren't far away from our shot at immunotherapies. Every time I've had a new diagnosis there was a new effective treatment for BC. Have I vomited more than any human should in a lifetime? Yes, but I'm sure there's a prize awarded for that somewhere, right?! [Surely one of you has a clever name for that!]
Remember to research hopeful stories and especially google Judy Perkins. I have the good fortune of knowing many people who are decades out from MBC. You and I can do that too!
I love you all,
PatGMcDoingWhateverComesNext
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Pat, I'm the same, would like PARPi at some point.
Side Effects: Grade 3 adverse events that occurred in more than 10% of patients receiving olaparib were anemia (8.7%), neutropenia (4.8%), leukopenia (3.0%), and fatigue (1.8%). Serious adverse events and adverse events of special interest, including myelodysplastic syndrome/acute myeloid leukemia, new primary malignancy, and pneumonitis, were not increased with olaparib; they occurred in 8.7% vs 8.4% and 2.6% vs 4.6% of patients in the treatment and placebo groups, respectively.
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Cure-ious, I'm always delighted to stop in and see you here! We've got this, babe!
PARPi is so close to PARTy!
Love from PatGMc
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Cure-ious, I'm always delighted to stop in and see you here! We've got this, babe!
PARPi is so close to PARTy!
Love from PatGMc
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KBL - I’m so glad you called rather then wait. Sometimes the findings on tests don’t sound ominous until they correlate to other findings in bloodwork, physical pain etc.Keep us updated. Hugs. ❤️
Pat and Cure-ious - so glad you popped in. I’ve been thinking about you both.
Candy - Hold on tight. It sounds like the beginning of this ride is going to be bumpy. I will pray for relief soon. 😘
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Candy - the CBD oil I just started has listed as one of the benefits that it helps with nausea.
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I have not called my Palliative Care Team yet. I do have the Zofran pills in the cabinet to use. I don't know if they will cause constipation with me, maybe not. Or maybe not horrible constipation but more of the usual constipation I do have. I need to try them. I hate to call Palliative Care when other anti-nausea meds could cause constipation too--- slowing GI and drying up secretions, a recipe for constipation with any anti-nausea med.
I have an appointment with my MO on Sept 20 for blood work and office visit. That will be 16 days after starting Lynparza. (I had the appointment set up before starting the drug) So I will discuss how I am feeling by then, and will see what hit my labs have taken from the med. If we need to consider a dose reduction--- for side effects or for blood counts-- then we can do that then. That way I would have given the med over 2 weeks chance, even though 2 months sounds like a more reasonable time frame based on the data. I don't want to reduce the dose or make a change too soon. Makes me sound like a wimp.
We shall see....
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Candy,
I would dispel all thoughts of being a wimp. I'd call your palliative care team. When I recently switched to xeloda, I felt awful. I couldn't eat or drink for the nausea. Long story short, I had to go to the ER to get IV anti nausea drugs and liquids because I became dehydrated. Not trying to scare you, but just trying to make sure you are aware of something like this. It wasn't fun. Also, just a reminder -- I take Ativan for nausea, and it is not constipating. Many of the anti nausea drugs are, but this one is not.
Good luck in addressing the SEs of Lynparza. Hope it gets better.
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Thanks BevJen. It is not that bad. I am eating and drinking--- not drinking as much as I should I know. One should drink a lot with these meds and I just don't feel like gulping liquid when I have a lot of saliva and feel nauseous. And my eating has went down, but I am still eating smaller amounts of milder foods. Soups, crackers, rice crispies cereal. Mild foods. And smaller more frequent snacks versus meals.
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Thank you, RK2020. Haven't heard back yet. Hopefully later today. Hugs to you as well.
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Hello, Dancers. I've been lurking here for a couple of months since my diagnosis with MBC in mid-July. My MO put me on anastrozole (arimidex) in early August. I meet with him Monday, September 13, and should be getting my Ibrance prescription. If my data shows up below, you'll see that I was diagnosed with Stage IIB in November 2011. My recurrence was discovered as I had a CT scan as part of my ovarian cancer treatment. A "sclerotic bony involvement" was noted on my sternum and a PET scan showed a non-enlarged mediastinal and a hilar node with moderate hypermetabolic activity as well. A subsequent needle biopsy to the sternum confirmed the breast cancer recurrence.
That's right. I'm BRCA- but was diagnosed with IIB high grade serous carcinoma in February 2020. After "optimal debulking," a surgery that took out everything reproductive but the kitchen sink, frontline treatment was 6 rounds of taxol/cisplastin and 22 infusions of bevacizumab/Avastin -- an antiangiogenic drug done every 3 weeks, completed at the end of June 2021.
PatgMc and Cure-ious, I've been on a PARPi -- niraparib/Zejula -- since August 2020. The PARPi side effect that I experienced most was a big drop in platelets, to less than 10. I was started at the 200 mg dosage and quickly dropped to 100 mg. (Many start at 300 mg) My platelets recovered after the dosage was lowered. I had no nausea, constipation, etc, just the impact on platelets. The PARPi's have the most benefit for women who are HRD+, which includes BRCA1+ and BRCA2+. Some OVC ladies have been on them since the clinical trials a few years ago.
Since I'm BRCA-, and because naraparib affects blood cells as does Ibrance, I expect I'll be dropping the PARPi for now. I can't find any info on women taking a PARP and CDK4/6i at the same time, and my gynecological oncologist and MO don't seem to know much about such a combination either. The good news is that right now I'm NED for OVC and my CA-125 marker remains quite low. That's one wolf I can try to stave off while grappling with the BC wolf. My GO is an integrative oncologist and a great coach on anti-cancer living, but that's another topic.
I've read all the entries on this Ibrance topic, from its creation -- all 854 pages. I feel like I've come to know many of you very well, and I've been in many of your pockets. You've taught me a lot already, and have helped me with those funkytown moments. (Rabbit, you're awesome.) In July, I was thinking I'd kicked Stage II breast cancer and was gearing up for OVC survival too. My GO and MO both were as shocked as me when the sternum met showed up. But as they sang at the end of Monty Python's "Life with Brian," always look on the bright side of life.
Love from Ann T in Nashville
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Hello Ann. Funny that you mentioned Monty Python today. I posted a link to their skit about the Ministry of Silly Walks today on another thread in this forum.
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Good afternoon ladies! Well the time has come, tomorrow I start my treatment. I am super nervous. This last week I’ve done all the adjacent appointments: dental check, brain MRI, labs. I think the dental check today hit me the hardest, having to explain what’s going on to someone I don’t know. I’ve been super emotional all day, scared at the future.
But I’ve taken some y’all’s advice. I took a Claritin today, bought the mouth rinse, and have been hydrating like crazy. Here’s to hoping tomorrow goes well!
Thanks for listening
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Welcome Ann. It sounds like you've had quite a journey so far but have jumped in with both feet and learned a lot about subjects we never thought would be necessary. Good luck with your next step- the Ibrance dance. 854 pages…wow.
You're prepared Katyblu so I think you'll do just fine. Hugs.
Candy - Have you tried sipping a ginger tea to help with fluid intake? When I'm off, I find sips of the warm liquid soothing and ginger helps too. And you are not a wimp!
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Re: Vaccine Booster. Surprisingly my MOs resident called me for she is off until next week. He mentioned targeted therapy is a grey area, when it comes to the vaccine booster. Not straight forward such as chemotherapy or an aromatase inhibitor. Therefore he basically said it's about my comfort level (whether i receive now or 2 months from now (8 months). He didn't entertain me having the antibodies test due to being 6 months out and not having had covid. So I asked about timing, which he mentioned no specific guideline but would advise scheduling during my week off, didn't see an apparent advantage taking off another week unless I was ill after the first week from the booster.
I appreciate the Oncology resident calling but basically he reaffirmed we are all learning as we go...
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Pat - thank you for the encouraging words about living with MBC. I have been in a slump for months since January when told that the beast had become metastatic and treatments would be for managing rather than curing. Was it ever really about curing? Probabl not, since it was the 3rd episode of BC. In Feb/March I was switched from Ibrance/Arimidex to Exemestane and Everolimus. Did radiation in April/May which really reduced the swelling, Later this month I will visit a different clinic in another state, and in October have plans to visit another in another state. I guess I am looking for second opinions and whether any clinical trials are available.
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BlueGirlRed, don't let anyone rob you of your hope and don't let anyone define "cured" for you. I'm glad you're exploring treatment options and I hope you'll chat with Cure-ious about trials. She's definitely our resident expert!
I've had friends with Stage 0 BC who are no longer with us and friends with Stage 4 who continue to live good, long lives. Only God knows how long we have to live and He knew that before we ever got here!
When I have one of those "oh-no-I'm-going-to-die-from-this" moments I stop and remember that yes, I may die from MBC but it isn't going to be today. I just need to keep looking for the joy in simple things and know that I'll have all the wisdom I need when my end comes. So will you. Let's don't waste any of our good times worrying.
Much love from PatGMc
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Thank you Pat for your inspiration and hope!
Concerning the COVID booster shots, my MO told me at my appointment Wednesday to get the 3rd shot ASAP. He never has worried about where in the Ibrance cycle I was at. He told me when I called to get my third shot that if they would not schedule or had any questions than to have them contact him. My MO considers Ibrance to be chemo and immunocompromised. I will be getting my 3rd Moderna shot next Thursday.
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PatGMc, it's always wonderful to read your hopeful posts! Thank you for being here! PatGMcAwesome is how I think of you.
Katyblu, when I had my last dental appointment, I had to update my chart with current meds, which led to me telling my hygienist about my MBC dx. She was really upset, and kept apologizing, "I'm SO sorry", etc. It was one of those weird situations where I tried to take care of her... that was unexpected, but I've been seeing my dentist and her team for years so it was basically okay. But still hard.
I had the booster vaccine and this time I definitely had a reaction - felt like I had the flu for 2 days, headache, nausea, fever, body aches... hopefully my antibodies are now robust!
Thinking of you all and sending much love ❤
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC54323...
This article describes a Chinese study of women with BC who took different Chinese herbs for a certain amount of time. They often take these herbs along with Western medicine. They compared a group who did both Chinese medicine and chemo and a group who only did chemo. The ones who took chinese medicine lived longer.
So I set out to try to find these herbs, but I can't really find a trusted source for these. I might call the acupuncture place i used to go to see if he can get me these things. There's 10 herbs listed in the article so it's sort of overwhelming to try to find them all.
Has anyone considered trying Chinese medicine, or actually have?
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GoKale4320 - Something that you need to keep in mind is that there could be drug interactions between your medications and some of the herbs.
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GoKale4320, in order to support my conventional western treatment for MBC, I'm adding some integrative practices, such as meditation and medical qigong, which is a Traditional Chinese Medicine practice. I want to strengthen my immune system as much as I can in order to "boost" the AI/Ibrance. That includes diet, exercise, prayer, staying connected to friends and family, and strengthening body-mind-spirit connections. However, Cowgal's right that we need to check any supplements in regard to how they interact with treatment. I meet with the medical qigong practitioner for the first time next week.
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GoKale - I am interested in what you try, if you found a reliable source, and if your MO expressed any concerns about the herb or interactions with other drugs. Many of our drugs do or did come from plants. Taxol and Taxotere originally came from the Pacific Yew tree. Heart drug digitalis once came from Foxglove.
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Maybe you can get some knowledgeable guidance. It sounds daunting as a do-it-yourself plan! One time I heard a speaker who was both a Chinese medicine practitioner (long family line of it) and a fully-qualified medical doctor. Best of both worlds if you can find someone like that. Also, what a about the Block Center for Integrative Cancer Treatment? Same idea, conventional treatment with complementary therapies.
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I started this Thread back in the Spring. I just posted again on it. Concerning Medicare in the United States. Anyone on Medicare and have knowledge of dealing with cancer while on Medicare, please check out my latest post and see if you can help me with my questions. Thanks.
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