Ibrance (Palbociclib)
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I have completed 30 rounds of Ibrance/Faslodex and when I had my bone scan on June 7th it showed that my BC appears to be no longer stable, so I had an appt. with a neurosurgeon for a consult, then was scheduled for a PET scan yesterday. When I got up yesterday morning I had my usual coffee, then breakfast. I left home and took Amtrak the 55 miles to the hospital I go to and when I got there the receptionist asked if I had been fasting for at least 6 hours. I said, "No, was I supposed to?" It turns out that no one informed me when I scheduled this scan that fasting was required. I was/am VERY ticked off that I will have to wait another 12 days (July 10th) to get another appt. for the scan. I also had to reschedule my MO appt. for this coming Monday to get my results to find out if I will be having surgery or my treatment will be changing. Plus, my MO is leaving on vacation on July 13th and will not return until the 23rd. Not to mention the money I wasted on the train fare and my time and energy. Figuratively speaking, I'd like very much to slap the young man that scheduled my PET scan appt. silly for failing to tell me about the prep I needed to do for the PET.
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JunieB, so sorry to hear of your progression and frustrating experience. Is this your first PET? That is what my MO uses instead of a bone scan. So different... I will be praying for a solution for you.
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JunieB- I'm sure others will chime in- but, I have had several PETs. The prep I have been told is 1.) no exercise for 48 hours before PET. 2.) super low carb diet for 24 hours before PET (greens and meat and eggs basically -some allow yogurt, some don't). 3.) no coffee for 24 hours 4.) fasting for 6 hours before PET. I always try to do super early morning PETs because of the fasting.
You can google various hospitals PET preps as well. They will do a fasting blood sugar before they inject the fluorinated glucose and then quiet dark room for one hour, no DH allowed. then pee and scan. (I have heard some are allowed to read, listen to music or watch TV during the hour- I was told that would skew results)
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husband 11. Unfortunately many clinical trials do not include objective measures of quality of life. There objective scales with specific ones for different types of cancer but probably less than 50% of clinical trials use them. I don’t know why that is. Patients consistently report that progression free survival is a meaningful outcome in and of itself but overall survival is the holy grail in cancer research.
Hobbes
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Need one statistic from anyone that has time to answer.How long before any sign of regression in disease showed after starting ibrance and letrozole..ty
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lakewoman - I started ibrance to go with letrozole in February- after not quite 3 cycles my ct scan said same size met, yet my bone scan said it had shrunk, either way no new mets 🙏
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Thank you everyone for your responses to the OS Ibrance study failure. I am now going to put that study aside as being incomplete without the time required. I am following all of the posts here and learning so much but wish I knew more so I could offer assistance. Ashlyn, I live in Ontario and am going through a lot of genetic testing. Mostly I believe because I have had ovarian and breast cancer and have a BRCA1 VUS which they want to identify further. Interestingly my onc commented about a week ago that genetic testing does not really help with treatments as (I think he inferred) there are not treatments available for most mutations yet. The hormone, her2, BRCA testing offers treatment. I feel strange even commenting this as it doesn't make sense to me given all the genetic testing I am going through and I will ask him to clarify this next month. Perhaps I misunderstood.
I was very happy that my blood work showed my CA125 is now at 20....within the normal range after 2 cycles on Ibrance and this is my ovarian cancer TM. This should cause lots of comments from my ovarian and bc onc's both of whom I see next month. I'm anxious about my scan's on July 13th but very hopeful now.
Cathy
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lakewoman, I'm happy to say that my widespread bone mets and single hot spot in my chest reduced dramatically at 3 months and almost completely by 9 months with very low FDG in the one spot in my chest. After 21 months the bone mets still show only healed tissue and they're not sure if the other spot is actually cancer any more. I've heard stories from people who now have no evidence of disease and others who have Progression Free Disease. It's all good and life goes on! My best to you!
Love from PatG
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Nkb - Thank you so much for your list of PET prep. The hospital's list isn't as comprehensive as yours. I sure do not want to have anything interfere this time. Unfortunately, my appt. is at 1:00 p.m. Thankfully tough this hospital has an amazing cafeteria and I'll be heading there once the scan is done.
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Hey everyone! OMG so sorry I have been MIA there has been a lot going on.
So near the end of may my fiance was on trial and I was sequestered for 3 days. The verdict isn't what we expected and his bond got revoked and next Monday is a sentencing hearing and I meet with his attorney today. Plus the week after that ordeal my mom has stepped up so I am not a lone to my appointments. I had a brain mri on may 30th and I saw her the next week (there is another issue which I will explain in a separate post) she said my disease isn't in my brain and we still have no cause of the nausea side effect. She has conceded that it is a late term side effect and we have tried ondansetron and scopolamine patches. Both did not work so we have put me on Compazine and since I have been anxious and everything I am now on ativan to help me out so I am not as stressed out. If the compazine fails I will go on Maridol and if that fails she was hesitant to say about taking me off the Ibrance. So far the compazine is working. So is the ativan.
So about three weeks ago I started a writing project and have been busy writing to my fiance and visiting him. But three weeks ago my hands started to go numb especially my right hand and the thumb. I let my team know and my spine dr got it ordered for my neck (cervical mri) but on sunday two weeks ago I had it in my entire hand and tingling on my bottoms of my feet. Took three frustrating days but I got a total spine with and without contrast and my spine dr apologized for how this got so bad and told me these new nurses aren't that great. The result is my c-5, 6,& 7 has some radiation damage which is what is cause it. So I have neuropathy and I am on gabapentin (300 mg) they can up my does to 400 or switch to lyrica. Yeah it sucks especially in my hands. My right hand is the worst and it is my dominate hand.
I am doing good I have labs, infusion, and meeting the oncologist I will get better on this. It just been hard to type but, also just depressed and that has been hard. I know on the 9th will determine my fiance's fate and mine too.
Also welcome to the new people to this wonderful team of ladies here who have done it all.
Chani
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So let me explain what I said I would do above. My oncologist Dr Mayer is fantastic but lately her nurses are terrible. I got a new nurse after the nurse I really loved left. So I gave this nurse a chance and I gave her many chances but she would epically fail. The worst one was getting my scopolamine patches. Dr Mayer sent it to my pharmacy and it wasn't being filled because the nurse messed up the paperwork. I call and they said to call tenncare. So I did. They said yes it was her fault she checked something wrong. So I call back and she said she didn't want to call them over this. No I am the patient. I did a follow up and she did call them and was going to call me and hour later I get a call from walmart pharmacy and I was like I don't use you guys and she told me that this nurse one didn't consult me, and two never called me back. I said it was fine so I called the pharmacy I always use and they weren't going to be in stock til monday and I said okay I understand that but this isn't on you I wanted to make sure she called you. I then got a call from the business administrator and we discussed it they were more concern on that I got my prescription but not the way I was treated. I got heated and said not nice things to her. I talked to her nurse manager and she felt just because I got the prescription that it's a moot matter. I asked for another nurse and she said she would call me back. She never did and I had to call a week later and she goes oh yeah Dr Mayer was going to call you and she basically became no help after she said that. So I saw her last month. She proceeds to discuss and to give this nurse another chance. That she is wonderful and I said yeah maybe to other patients but not how she has handled me. These are three incidents: the First one I asked for my id card for my port and she replies you mean your implants? No port card. Then when I was nauseated and I am explaining she asks if I have acid reflux no I am trying not to throw up. and this the patches. I have had to think it over and I discussed it with my fiance and my parents and I am moving oncologists. It was good to talk it out plus its a lot closer to me where I live it takes me an hour and a half to see my oncologist now. So I am hoping for this to go through.
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TY Pat M and janky for your responses to my question much appreciated..!
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hi Lakewoman- my tumor markers started dropping dramatically right away and were in the normal range after 4 months. My met was to by supraclavicular node on the opposite side. It started shrinking right away, I had it removed after 9 months, and there was no active cancer in it. I have now been on for just over 3 years and all my scans are clean and my TMs normal, so I guess I can say i am “NED”. I recently went down to 75mg. It gave me a big boost in energy and my TMs have stayed in the in the normal range. Praying fro a good response for you. Kitt
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Thank you, Time-for-a-cure! It's lovely to check in here late at night and find such an uplifting story....a gift from God. I pray that you continue to remain NED for years and years. I flirt with the idea of having my one little place with a bit of FDG removed and you may make me do more than flirt with it after my next scan. Have a happy Tuesday!
Love from PatG (also on 75mg)
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hello lovely ladies! Its been about a month since I’ve posted, as I had fallen behind in reading and couldn’t get caught up until tonight. Wow / lots happening here! i laughed, cried and smiled at all of your news.
I have been really busy with my job and some volunteer work that I signed up for before I was dx in mid feb with my bone met. So busy, in fact, that I forgot about my faslodex shot and got it 2 weeks late ☹️ I still can’t believe it did that.
So I am finishing up cycle 5 of Ibrance and I have a pet scan scheduled for this Friday. (It is a follow up to a bone scan/CT scan that showed no new cancer but was inconclusive on the status of my known rib met, which was also blasted with radiation in March.).
I have a few new side effects that are annoying me.... I do get the watery eyes that were just discussed and while I don’t get scalp itch, I do get sometimes severe scalp pain. Usually lasts a day or two and appears to move around my head - not really ever in the same spot. Doesn’t happen every month.
This is the 2nd time I’ve had laryngitis. Last time it went away after a few days. Now it’s back as of today. Anyone else have his one?
Also my short term memory is getting really bad. Does this subside? It’s really difficult to live my life with this chemo brain and I’m praying it starts to get better at some point.
Wishing you all comfort and clear scans!
Lauren
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Husband, avert your eyes.
The following has nothing whatsoever to do with MBC and thus should not be included in this string. However, I thought that a little injection of levity might be a good thing.
Yesterday I had to "go to town" to do business, so with very limited time available before departure, I racing through a down-to-the-bare-metal on my face, in an effort to look professional in this 100 degree heat we're having. My eye shadow base was getting low, so I picked up a back-up tube and applied it to my eyelids. Hmmm, I thought, as I spread it around…this appears both shiny and quite sticky. Nonetheless, I soldiered on, worrying a bit that great chunks of a pale brown eye shadow might adhere to the shadow base. IT DID...and it was no longer pale!
I tried to read the tiny label on the base of the tube to confirm that this was, indeed eye shadow base, to no avail without a magnifying glass, which was in the other room. I tried to spread the chunks of color around a bit with a Q-tip, with limited success. Ultimately, and with no time left, I realized that I had applied LIP GLOSS to my eyelids!! Old ladies should not be left alone in a room with lip gloss. Nothing good can come of it.
With no time available for further repairs, I raced out of the door into the heat and spent the rest of the day having my eyeshadow and the offending lip gloss melt and drool down my eyelids, effectively melting and obliterating everything in its path, to include both eyeliner and mascara. I returned home faceless (I'm blond, and without makeup, one side of my head looks much like another).
The lessons learned: Leave the lip gloss to younger folks and always have a magnifying glass close at hand!! I'm still scrubbing lip gloss off of my eyes!
Onward…..xox
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Joyner - so funny! Puts a new spin on the 'multitasking makeup' which Ialways see advertised.
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Joyner, thanks for the humor to start my day!
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For the last week or so I've been thinking about posting, "Hi Joyner. Where have you been?" Then I see the product mix up post. Funny. I don't wear makeup. Never have. Weird, right, but you are used to that with me. I do have a product mix up risk every month before my MO appointment. The bathroom counter has toothpaste, of course. Mine also has Monistat for my common yeast infections. Sometimes, there is a tube of one of my vaginal moisturizers out on the counter. Then, the night before my MO appointment, I put out the numbing cream for my port. Four tubes of very different products for very different purposes. I can imagine each misuse of each product and smile but I have avoided any so far. Numb vagina anyone? Oh, wait, I already have that.
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I love it, Joyner! Thanks for the laugh!
Loe from PatG
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Sorry to repeat this if one of you has already posted it.
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Janet, I almost used Preparation H for toothpaste once. Does there appear to be a pattern here?!?
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Joyner and Jaycee,
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PatMc I was just about to post that same article. It seems like somevery encouraging research to me. cCure-ious what do you think?!?
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Chani, so sorry to hear about your recent issues. You've got a lot on your plate, and I'm sending prayers that you get relief soon on all fronts.
Time, I've had 11 cycles at 125mg and starting 12 at 75mg after a 2 1/2 week break to get my labs right. I'm bone tired, and hoping the new dose will get me my mojo back.
Lauren, I'm sorry to say my memory has gotten worse over time.
Joyner/Jaycee, thanks for the laughs this evening! Maybe we need a color code system: blue for eyes, red for lips, brown for .....
Happy Fourth, all you darlings!
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Hey, Thanks for the new info, Penny & Pat!!
Here is the link to the paper:
https://breast-cancer-research.biomedcentral.com/a...
They examined how cancer cells progress on treatment with Affintor-Aromasin (aka Everolimus-Exemestane) combo and found that Her2,3 signaling goes up- they then show in multiple cell lines that a 3-way combo of Faslodex, Affinitor and Neratinib (which inhibits Her2 and Her3) is better than any other 2 way combo. Because the paper was supported by a company, clinical trials will presumably start soon.
Affinitor is an mTORC1 inhibitor, and a whole slew of second generation mTORC inhibitor compounds are in trials and not doing superbly, so why and how to hit the cells so resistance does not pop up in a year or less has been a long-standing question. Neratinib is associated with severe diarrhea so the hope with these combos is also that lower concentrations could be effective, with fewer side effects.
But we also have a recent study from UCSF showing that mTORC1 inhibitors like Affinitor (or the newer ones) work a lot better when combined with the Aurora A kinase inhibitor, Alisertib. They showed that increased Aurora A kinase was how the Affinitor-resistant cells were growing. In tests of Affinitor-Alisertib combination, all of the mice got tumor shrinkage and cell death, which did not happen with either drug alone. These guys are also heading for phase 1 trials.
Here is a review of that study:
https://www.genengnews.com/gen-news-highlights/pat...
I guess with the recent data showing that cancers are not sensitive to Ibrance if they were already treated with Affinitor suggests one should exhaust using CDK4.6 inhbitors before moving to Affinitor regimens.
So perhaps two reasonable secondline options, after progression on Ibrance-Femara, would be either Faslodex-Abemaciclib-Keytruda (if they ever get going on that trial) or Faslodex-Affinitor and either Neratinib or Alisertib...
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Joyner - thanks for the laugh.
We have all been there in one way or another. We just have to roll with it. PatgMc - when i had my lymph node removed they told me there was no evidence that it would make any difference in my prognosis, which I understood. But i wanted my ‘cancer factory’ out. I am a nurse practitioner and I work in administration at a CA Center, so I understood what they were saying - but I really wnated it out, so out it came and then I had the area radiated. Belt and suspenders. Who knows?
Curious - thanks for the great review of the trials. Very helpful!
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Joyner - thanks for the laugh.
We have all been there in one way or another. We just have to roll with it.PatgMc - when i had my lymph node removed they told me there was no evidence that it would make any difference in my prognosis, which I understood. But i wanted my 'cancer factory' out. I am a nurse practitioner and I work in administration at a CA Center, so I understood what they were saying - but I really wnated it out, so out it came and then I had the area radiated. Belt and suspenders. Who knows?
Curious - thanks for the great review of the trials. Very helpful!
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Joyner and jaycee- those stories would shock me if I hadn't done it myself. One morning I went to brush my teeth and instead of toothpaste I grabbed my granddaughter's Destin. It was awful!!!
timeforacure/ joyner- thank you for always keeping us updated on the research that is being done. And explaining it.
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Holmes, it is not I who is explaining anything...it's the scientists among us, a group which does not include me! I just sometimes find interesting articles! And put my face on incorrectly.
Patg, thanks for the link to the article. I'm a bit confused on its content: it refers to "triple therapy" using three different drugs, but later in the article it also refers to HER2 and HER3. Is this potential upcoming treatment applicable specifically, and perhaps only, to HER2 positive/negative patients?
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