Ibrance (Palbociclib)
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Anyone switched treatment from Ibrance to kisqali after tumor marker elevated? My oncologist suggested I can switch if I want. My marker keep going up and ca15-3 is 43 in latest lab.
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I forgot to mention that my CT/ Bone scan on August 25 showed stable.
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Hello everyone! Just wanted to pop in to see how everyone is doing. I had my palliative radiation to my left hip. It has helped a lot with my pain, though I still get a tinge when I sleep. It's only been two weeks so even that may go away still. But I recently had an x-ray on my right elbow due to some chronic pain. Turns out I have some bone marrow lesions in my elbow. Anyone else have progression to their elbow? I think that's kind of weird…. Talking with my MO, we are going to do a full body scan in the next few weeks and then decide what to do about treatment.
I hope everyone is doing well!
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@katyblu Just wanted to say thinking of you as you get your next scan. I am unfamiliar with lesions in the elbow bone marrow.
I cross posted this on My Love, Life, Mel's Porch
Today I rec'd a very upsetting letter from Pfizer Finan. Assist. Program.
Starting Jan. 1, 2024 you must meet all 2024 PAP eligibility requirements:
Have an annual household income at or below 300% of the Federal Poverty Level, adjusted for household size. ***** Patients who enrolled in the PAP in 2023 with an income above 300% and at or below 500% of the FPL are eligible to re-apply for 2024.
Have a valid RX for a Pfizer med avail. in the PAP.
Have an FDA-approved diagnosis for the req. meds.
Be uninsured or publicly insured via gov't.-provided insurance and unable to afford your copayment. Public insurance includes, but is not limited to, Medicare, Medicaid, Champus/TRICARE and VA. If your are commercially insured )e.g. insurance through your job or through a Fed. Employer Plan), you will not be eligible to reapply.
Reside in the U.S. or a covered U.S. territory.
Be treated by a healthcare provider licensed in the U.S. or a covered U.S. territory in an outpatient setting. END
This is absolutely terribly upsetting news.
Laurel
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Irishlove. Are you on medicare?
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Just return from the oncologist. The good news is that the cancer appears to be gone in the right lung. ❤️❤️❤️ There is still some pleural thickening and scarring but not enough to prevent me from having knee replacement surgery in early 2024 if my ca27.29 number stays down. Not that I want knee surgery but the knee pain is making it hard to do things.
@Sunshine99 We talked about the tree in bud that showed on my ct scan in the healthy lung. He said that they are seeing more of that on ctscan. He thinks it is from the cdk 4/6. They no longer test it unless it continues to get larger because the biopsies often come back indeterminate or inflammation no evidence of cause. They are seeing a lot of tree in bud. They are think it might be from the fires in Canada. June was really bad. We were in the 250-300+ range most of June. Felt like it was always foggy but could smell smoke.
The bad news is my oncologist is leaving in November. The only two breastcancer Dr. remaining are the two I don't like. The one tried to pressure me into chemo which I didn't want and didn't need. The other one was nice but refused to deal with the horrible side effects I had from Letrozole. He told me I needed to learn to live with them. I stopped the meds because I wanted to kill myself. I couldn't live on two hours sleep a night, feeling aggressive, ruining relationships because i would become angry at the drop of a hat. etc. After I stopped the meds. He told me if I wouldn't take the meds he would discharge me. I could come back if the cancer returned. I clarified about the follow up and he again said no need, but wrote on the chart I refused follow up after after discontinuing meds. I have a couple of months just not sure what to do there. At least I have a month or two to figure it out.
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@brutersmom I am on Medicare Advantage, HUMANA HMO. There are a number of concerns I have with that letter, not just for me, but others. I think Pfizer should be ashamed of themselves. What are they worth, a couple billion $$. I hate that you are losing your fav MO. I also hate when Dr. won't work with you and then want to write you off. Your body took the hit, your mental health took the hit. Why can't the MO work around that and come up with options? Where are the kinder and gentler treatments and Doctors?
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Good morning! Thought I’d pass on some info regarding dose reductions
I’m way past taking Ibrance but when I was taking it, I had to quickly reduce to 75 mg due to neutropenia. If you (or your MO) are concerned about dose reduction, I encourage you to not just read the synopsis but to read the full article. I personally found it interesting that it even mentioned HER2 low which wasn’t even “a thing” when I was on Ibrance but yes, my bone biopsy showed I was HER2 low. Some anecdotal information about myself is that although my bones were HER2 low in 2020, my 2023 liver biopsy showed those lesions were HER2+.
I hope you all get a very long PFS on Ibrance!
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Rk2020 interesting article. When I was first diagnosed in 2015 I was stage 1 0 nodes. Her2 negative at 1.4 I to never heard of HER 2 low. When I was diagnosed with mets again the year, I realize the world of cancer has changed. I took away 3 things from the article that helped my understanding. After 6 months I was dropped to 75mg due to low neutrophils. This month was the first time I was over 1. I have a high Ki67. That explains why my Dr seemed to think from the beginning I would end up on the lowest dose. I never asked why. That was the least of my worries through those first 6 months. Also, my cancer had only spread to one sight when it was discovered. Apparently that works to my benifit. I learned on Wednesday I was NED and minimal lung scaring. Scarring was less then expected. I am hoping for a long run on my first line and the article seemed to support that thinking. But we never know what will happen. Cancer has a mind of its own.
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Well, after my visit with my MO, I'm still off the Ibrance but she doesn't want me on anything else right now. She showed me the alternatives, none of which are a good option. My latest EKG showed I was at the threshold for whatever heart issues they have. I don't remember the details. The other option was also not a good one due to unknown side effects. My blood work and bone scans are stable, so our focus will be on getting the swallowing issues resolved so that I can go back on the Ibrance.
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Sunshine99 that sounds so frustrating. I hope they figure it out soon. Is your cancer staying stable?
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Thank you, brutersmom. So far, my cancer is stable, but I'm afraid it's lurking in my gastro system or in my lungs. On a good note, I had the best sleep ever last night and didn't cough at all. Maybe it was the Thai food we had for dinner. Who knows? haha
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This time of year and in the spring as the weather changes and pollen count goes up and down I get sinusitis. Spring wasn't a problem this fall I have started with my usual headache. Last night it has became worse then ussual, no fever, but I feel like my head is going to explode when I bend over. Better today. Storms moved out this morning. It is all sinus pressure. Normally I would take two advil and go about my activities but because of effexor and Ibrance I have been told to keep advil to a minimum. I am not one to run to the Dr with every ache and pain. I am starting my last week of Ibrance which means my neutrophils are closer to 1 then 1.5 when I started. How do I know when to make that decision?
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@brutersmom Oh don't suffer girl, go to the doctor and get better. I had not heard you should stay away from advil. I do recall reading that claritan is a great otc med that clears sinuses up quickly. DH just bought me a vaporizer and some AYR gel for my nose as I've been having some blood when I blow my nose. Just started using it last night and it's already helping.
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Irishlove. It is the effexor that is the biggest issue. I have been taking advil for my knee and I had to cut back. It also raises blood pressure. I already take Claritin. It is my friend. I just don't know if it is safe to wait and see it it is just my normal inflamation or if I should deal with it only to be told it is just allergy. Ibrance and neutrophils are new territory for me. Pseudoephedrine used to help but lately side effects seem to follow me everywhere.
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Brutersmom - I take Verzenio, not Ibrance, but look at this thread from time to time because of the two drugs being so related. I have real bad sinus issues too and I have found that Claritin seems to make things worse. Have you tried nasal irrigation with Neil Med sinus rinse (bottle and packets)? I've tried a lot of things and so far that is the only thing that really helps in my case. This stuff is so individualized though, so who knows, but thought I would suggest it. Real sorry you are going through this. I know how frustrating and exhausting it can be. Hope you find a solution and feel better soon.
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Threetree the ache started Thursday night my nose always runs on Ibrance. Late Saturday I started feeling like my eyes were going to pop out of my head when I bent over. Typical of this time of year when storms are passing through. It is now Monday morning and it is still that way. I am heading to an urgent care. Just need some reassurance because I am on my last week of Ibrancce and I know my neutrophil count is getting down toward the one mark. I finally decided better safe then back in the hospital.
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brutersmom, I hope you get some relief very soon!
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No Dr appointment available until thursday. Went to to urgent cares with about 3 hour waits . Drove an extra 8 miles. Only one person ahead of me.
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Good, good luck, Brutersmom. That sinus business with low neutrophils is nothing to mess around with. I think urgent care is the best way to go too.
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I finally got seen today. My Drs. Office can't see me till Thursday. The first urgent care I went to had a 3 hour wait. The second one had a 3 hour wait and I had to wait in my car. I drove down to one about 15 minutes further and I was one of 2 people in the waiting room. This may be my new go to place. It a little further away but they said their wait times are normally a lot less then the ones up near the city/suburbs area. The PA said the sinuses are pretty inflamed and at risk for becoming infected. Suggested a course of antibiotics because if the low neutrophils count. She verified that with the MD on duty. Otherwise she would send me home recommending, Tylenol or Advil, decongestant, flonase otc, and nasal mist. My last sick visit other then for my cancer diagnosis was in April 2019 when my Allergies won. That is a story for another time. It was most likely work related. Is this going to be part of my new norm?
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@brutersmom Thinking of you and hope it is not part of your future, just may be seasonal change? I'm using a vaporizer and AYR for my nasal passages. Seems to be helping. Glad you found a place without a ridiculous wait time.
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I am having trouble moving around this blog …
Looking for others on Afinitor and Aromasin
I am 10 years out with just liver Mets …this is my third regiment
Five years of Xeloda and five with Ibrance & Fasoldex
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Landafflady Did you try searcing affinitor in the search bar. The little magnifying glass in the upper right. I found one site titled Affinity and extremist 2013. Don't know if there are others. That one wasn't very active. Maybe it is time to start a new tread.
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Ibrancers:
I think my time with Ibrance has come to an end. The reason for progression while on I+L is due to unknown reasons for the occurrence of mutations (ESR1 and others)that make cancer resistance to endocrine therapy.
I finally got my scan report, the results aren't good, cancer has entered my liver, within only 8-9 weeks multiple tumors show in my liver and the lymph in the primary tumor grew significantly. so I went from bone only to liver metastasis in a blink.
on top of that I tested positive so I had to hop on telehealth call with the second opinion and current (soon to be former) MO. the second MO is pretty confident about starting me on Elacestrant as mono-therapy which I am on board with this, at least now that the cancer is growing aggressively. He mentioned if Elacestrant stops working then radiation therapy can be an option. his plan sounds promising as oppose to my MO's proposal, she wants me to join her clinical trial which includes a hormonal therapy with an old med (targeted therapy), I disagreed while the cancer is endocrine resistance why we continue hormone therapy anymore? her response was basically "it is your only option!" on top of that, she wants me out of meds for at least a month before starting her trial. she doesn't seem to care about my genomic testing results and insists on enrolling me in her trial. even more frustrating is that she renewed my prescription!! knowing that the meds weren't effective anymore. Oh one more thing, the clinic has stopped sharing scan results with patients- new rules! it's a frustrating situation and I feel my concerns about my health aren't being prioritized. noway I can continue with that opinionated, disorganized and careless MO. I am hopeful that my insurance will approve the second MO, so I can start treatment sooner.
Right now I am off meds. I might post in another thread, but I am hopeful that anyone who knows or has heard anything about NF1 and ESR1 mutations treatment can chime in with insights.
Thnxx
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Sorry Snow-Drop-What disappointing news. I don't know anything about those mutations but I'm sure someone does. That doctor sounds really awful-I'd switch too.
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Snowdrop, sorry for the scan results. Did you find out your ESR1 mutation positive by blood work or biopsies? I have read that the longer you take aromtase inhibitors, the likelier you were to have an ESR1 mutation. Do you or your onc consider to switch to Faslodex?
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Snowdrop, Sorry to hear this. I have heard of the mutations but I am not versed in them. I thought it was federal law that your records had to be shared with you under the HIPAA ruling to help you make decisions about your health care.
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I have been on Ibrance and letrozole for about 8 months. Suddenly this week my nails have developed ridges and 4 of them broke at the quick. Not real sure if it is medicine related or something else. I normally have strong long nails.
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All my nails have ridges and break off easily. I now keep them very short.
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