Ibrance (Palbociclib)
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Mammograms---- I asked my old MO and she said yes I still needed them. I do not do PET's, just CT's. I had one breast removed, but I still have the one remaining. And I noticed they also scan the removed side-- looking at chest wall? I just changed MO's, so I have that on my list to ask new MO--- appt with her Sept, and mammo due in Oct.
As far as other screenings----- I think we should still take care of ourselves. Yes we have Stage 4, but we do not know how long we will be around. Don't write me off yet. I do not do skin screenings, don't really know why just never have. But I still go to eye doctor yearly and have the doctor dilate my eyes checking the health of the retina and optic nerve and the back of the eye. I still want cholesterol checks. I have a thyroid nodule we scan yearly to check the size and thyroid lab work to check the function. But my PCP told me something interesting when I was first diagnosed--- he said some PCP's he knows would stop all the screenings if a patient came with Stage 4 cancer. Nice. Just go ahead a dig our grave, why don't ya.
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Yes, yearly eye check too. An online friend on a different forum had BC. Went for eye check, found cancer in her eye. Had treatment, but lost vision.
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I had the mammo discussion with a women who had a prophylactic mastectomy due to BRCA1 gene. She still got mammograms becauseher surgeon said that it is impossible to remove all breast tissue. They need to watch far back on each side in my axillary or arm pit area. That is where breast tissue is not as defined and more difficult to completely remove. That makes sense to me because my stage II tumor was basically in my armpit wrapped around a lymph node. My scar is literally in my armpit. I always joked that I didn't have BC, I had armpit cancer.
And any PCP that would stop ordering tests doesn't have a clue about MBC and how long we can last. I would get another one. Speaking of...I need to do that I moved states so had to find a new one, then the new one moved. I just haven't done the work of finding another. Other then the cancer, I’m pretty healthy
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Ahhhh Spookie - that was my fear when I went for my eye exam last Wednesday. My vision changed greatly in 2020 and I was thinking “is there something growing there”? I thought I was being a bit paranoid so I never spoke those words out loud until I specifically asked the doctor as he was reviewing pictures of my eye. The strange thing is that the doctor said my prescription changed about 50% - for the better! Isn’t that crazy? He said it’s more rare but it happens. No wonder I didn’t want to wear my contacts but found my glasses more comfortable. My glasses are an older, weaker power prescription. Huh. I’ll take that win!
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I’m a little confused, so I’m going to ask questions. My cancer has already spread to bones and stomach. Even if they now found the cancer in my breasts, which they never have, what would I do? I wouldn’t have a mastectomy, as that’s to try to get it before it spreads. I had a biopsy on my stomach and spine and both are the same ER+ PR+ HER2-, so treatment is still Ibrance/Letrozole for now.
I always want to know information that I may be missing, and that’s why I’m asking. You all always have great insights.
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KBL,
If something new popped up in your breast and your other areas are controlled then a biopsy would be in order. It may have mutated or may be a different breast cancer and it’s not uncommon. Mine turned triple negative and a friend has both HER-2 positive and negative. I’m getting a second biopsy in less than a year for this reason. Stay aware!
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WanderingNeedle, thank you. That’s the main reason I had a biopsy two weeks ago on my bone mets. They were the same makeup as in my stomach. I had an MRI on my breasts in 2019, and they’ve still never found anything. I did read one time that sometimes your body can fight off what’s in the breast but can’t elsewhere. I’ll keep an eye and keep checking for lumps, though.
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This August 2020 paper about what could cause resistance to Ibrance + anti-estrogen looks important. It could help in choosing the next line of treatment/trial after Ibrance fail and genomic testing.
The genomic landscape of intrinsic and acquired resistance to cyclin-dependent kinase 4/6 inhibitors in patients with hormone receptor positive metastatic breast cancer
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Thanks ShetlandPony for passing along the article. I found it very interesting.
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Thanks for your thoughts. I guess before I make the mammo appt. I will check to see what my Onc thinks. I will continue to have cholesterol checks because that blood test is never run at the cancer clinic and I do take Simvastatin. My PC physician said I no longer need pelvic exams or Pap smears since I've had a complete hysterectomy; glad to be rid of those! What about colonoscopies? I know dental care and eye care are important regardless of what ailments one has.
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My PCP was after me to do the colonoscopy. I’ve never done it, and won’t. I told him I had such bad diarrhea from chemo I didn’t ever want to be like that again.
You really should do it, and keep up with all else too, except for tests for body parts you no longer have. I only had one ovary left, nothing else, and I was not about to subject myself to a pap.
If I have some symptoms then yes, do your test. Otherwise leave me alone. Or my scans might pick up something.
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My physicians assistant, who I really like, just had me do the Cologuard home test, which was much easier than a colonoscopy, but I suppose If anything looks suspicious, I'll have to get a colonoscopy anyway.
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I've been away from Internet access for a week, went camping, no cell coverage either. Alot has happened on this thread. I did not know there were schedule options since the box comes with specific directions for 21 days on/ 7off. My oncologist has never suggested it. She always asks if I've missed a dose. I'm always wondering if it is really working, and for how long, since cancer seems to mutate and develop resistance. It seems like some on this thread indicate that it might change from hormone positive to negative. Is that ever checked after an initial biopsy? The biopsy in 2019 indicated 80% for ER+
Simone80 - it is frustrating to explain to someone the SEs and have it dismissed. That is why it is nice to have this group. Share stories,experiences, and maybe what works for one person will work for you as well. Fatigue was the worst during the first several cycles. Still get it, but not as bad. My oncologist suggested that maybe the 100 mg dose would not cause as much fatigue as the 125. She had it lowered, not because of SEs, but said that it would be just as effective, and that it is INSURANCE that demands the higher dose initially, because that is what came out of clinical trials. She also explained that the low blood counts were an SE not because that is how Ibrance kills the cancer. I'm on week 2 of the lower dose, and am hoping for higher blood counts and less fatigue. I'm wondering if an ND could help with what might make you feel better as far as nutrition, supplements.
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Shetland, Thanks very much for pointing out that paper about CDK4,6 inhibitor resistance!!
They found 8 different ways that resistance can develop, and there are surely more since they did not even get into ESR1 mutation (altho maybe they lumped that in with ER loss, which they do mention)- the mutations they discuss were responsible for 66% of the resistance tumors they studied, so there are other mutations yet to discover.
New pathways that were not previously published by other groups include activation of AKT1, RAS, or AuroraA kinases, and there are kinase inhibitors for some of these.
So, it speaks to what you were saying earlier, that you really want to know, as much as possible, what the molecular profile is of the cancer after it has become resistant to a drug or drug combo like I/F...
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BlueGirl and others who are interested,
I still have Pap tests and pelvic exams, although I had both an oophorectomy and hysterectomy in 2006. The reason that I still do it is because 2006 was my first recurrence, when I had breast cancer cells on a polyp on my cervix. But, I have ILC, and as we've all said, it spreads to weird places. So my MO wants me to have a yearly exam with my gynecological oncologist who did the surgery in 2006.
BTW, the stuff on my cervix was NOT picked up on a scan -- only on an internal. Also, I just had a colonoscopy, and they found some polyps that were not picked up on scans -- my CTs have mentioned diverticulosis, but not the polyps.
But, each person should do what they are comfortable with and what their doc recommends.
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Although ESR1 is not mentioned in the abstract, they do discuss it later in the paper.
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Hello my friends!
It has been a long time since I have written but I feel like I may be needing to find my way back home to these boards again. Hope this message finds everyone doing as well as can be? I do not think I am able to catch up from the last time I was here, but I will do my best to be more "present" as I really loved the support here and found it very helpful to have you all to chat with and throw out interesting ideas and helpful suggestions!
I am not certain what is in store for me but I found out last week that I am finally showing some clear progression to my liver and lungs via a CT scan. SIGH. It was as if in May, when I had my last CT scan, there was nothing there and then boom! Suddenly these two growths are being detected? Wild stuff!
I have a liver MRI on Wednesday and I am currently away on vacation trying to pretend none of this is happening and quite honestly eating a lot of medical marijuana edibles that seem to be helping me psychologically SO much at this time. I feel practical and rational and I will know in about a week what the next steps will be.
I will check back in!
Love to all,
Philly
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Candy,
You mentioned a module on your thyroid.....please add that to your list to discuss with your new MO. Maybe she can even order labs for your next blood draw so you can discuss them. I wonder if that nodule is wrecking havoc on your energy and mood
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Philly - so happy to see you again, but not happy to see the progression. I hope you stick around while they sort you out again. Quick question - what is the situation with your breast tumor - did that reactivate or progress or?
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LovefromPhilly, my prayers will be going up for the MRI to disagree with the other scan. That happened to me in the past year and it can happen for you.
Since 2012 I've had "something" in my liver, "something" in my lung, and that last "something" in the tissue around my sacrum, not to mention the "something" in my brain. They actually were, in this order.....fat, nothing, nothing and mets that grew a bit on my skull.
Try really hard to remember that yours may be nothing at all. I'm counting on that!
Much love to you and all our other dancers and here's to Sweet Nothings!
PatGMc
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Good to hear from you Philly, hang in there.
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Philly- I posted to you on the Liver Met Thread. But Sondra reminded me, since we have not heard from you in a while, didn't you have some progression back in the spring to your SI and spine? What happened with that? Keep us posted on how you are doing. Missed ya.
Jensgotthis- Yes, I have a thyroid nodule. Found by my PCP back in 2015, before the cancer. My PCP monitors it. He orders the ultrasounds and blood work for monitoring. It is on my medical records and you can see it on my neck. When I talk it is really noticeable- looks like a second Adams apple. My TSH and T3 and T4 blood tests are all normal so far and my last ultrasound showed no changes. I doubt my mood and lack of energy is from that, but who knows I guess. I think I have some depression from the cancer and the current Covid restrictions--- understandable. And the fatigue I think is from the cancer meds--- my old MO said that letrozole, lupron, and Ibrance all can cause fatigue and she was not surprised I was fatigued being on all of them. I will mention the fatigue at my appt with the new MO and I want to ask about any counseling services the center may have. I really do not want to go on depression meds. Too many meds in the system with potential side effects from all of them. The less the better.
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Philly, good to hear from you. Sorry to hear about your progression.
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Philly...good to hear from you again. I will be keeping you in my thoughts and prayers.
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awwww this has felt like the warmest hug and love!! Thank you so much for welcoming me back!!!
SondraF sooo good to see you too! So far my breast tumor isn’t showing any issues as far as I can tell. I get occasional twinges of pain in that breast (where tumor was) and I think I’m imaging it! Does that happen to you?
PatgMc thank you thank you!! I needed to hear your words and read your post! You’ve always been a source of hope light and optimism for me! I DO keep thinking: no way!!!!!! The only reason we bumped scans up this time is because I had been having this odd low grade fever every night for the past like 1.5-2 months now. I should have kept a diary about the symptom...I kept mentioning it to the MO team and finally my MO said this sounds weird let’s scan. Otherwise it’s the typical diarrhea now and again and fatigue and achy joints but I’ve been feeling quite well! I went kayaking 4 miles and took an 8.5 mile hike three days ago. How can a gal with cancer do so much??? What a mind trip! I am hoping that I have the same experience as you. What a nightmare to be put through all that stress though. So insane!
Candy: as far as I know, we’ve moved worrying about the new mets spots to now this 🤔 good memory btw! Ct scan says nothing is very exciting in terms of the bone mets, just the same ol “innumerable osseous lesions in bones.” Not the most calming thing to read but at least it doesn’t say major tumor on my pituitary gland or something like that which would make me very nervous!
hello and lots of love to jensgotthis, Karenfiz, Jack5le, Simone!!!
I have continued to hold you all in my thoughts and heart!! It feels good to be back with you all ❤️
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Philly - my bone mets have resolved almost entirely but last scan in June showed the breast and axillary node are still hanging tough. However, the MO I spoke to last week admitted they (still) don't have the original diagnostic imaging to know if its actually changed. Essentially, from Feb to June based on their scanning no size change in the breast tumor. I don't have any feeling in my breasts due to my reduction. But let me tell you, that axillary node burns, usually when working out. The nipple has retracted further and looks different almost every day, so who knows what is up. I think it has to do with my pectorals being used more now. I've been lap swimming, got a spin bike set up at home, and do weight lifting too. Come a long way since December!
This cancer thing is a total mental trip isnt it?!
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Philly - Good to see you back. Hope your MRI gives you better news.
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Just a quick check in. I'm really out of sorts. One of my chemo buddies from early stage diagnosis just found out she metastasized like me. Another is investigating possible metastasis. My heart is broken, 3 including me from my group progressed with a possibility of a 4th. I hate this disease, I really really do.
Philly, Its good to see you again, although I'm not happy to hear you have progression. Again, I hate this disease.
I hope to crack wise again soon, I think I just need some time to process.
Love to you ladies.
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SondraF huh that must feel...disconcerting? Has your MO seen the visible changes in your breast tissue? It is very confusing to know what is what. For me, one of my symptoms of my breast tumor was that my nipple started retracting and the tissue of the breast became quite taut. Also, there was a swollen lymph node (2 actually) in my axilla, and the tissue started to get the inflammatory peau de l'orange effect, even though it was not inflammatory breast cancer...although the head of radiology at the time told me she feared I did have that type due to my symptoms. Welp, she was wrong...it turned out to be ER+/PR+/Her2-...so anywho...I guess I would say keep an eye on it as I am sure you have been and maybe you need to make a bigger stink about it with your MO. Sometimes I think they get so overwhelmed, so many patients each day, that it can be easy to miss something obvious. I literally had to send like 3 emails and over the course of 2 months of appointments told my MO team that I had these weird low grade fevers and they kept dismissing me about it. Self-advocacy is so necessary with this disease (and I am sure many others). I hope it is your pecs getting stronger with that amazing weight training you are doing!!!
But please listen to your body and your gut until you feel satisfied with the answer. RadagastRabbit and SerenitySTAT - so good to see you too. I hope that whatever is next for me on this wild ride brings with it lots more laughter and joy that I have had so much opportunity to have thankfully. For some reason, every day I get more and more into F-it mode and really have been enjoying my life in so many ways quite honestly. I plan to keep doing it this way until I physically cannot anymore, whether it be from MBC or from some other reason. Thank you so much for the well wishes for scans on Wednesday. I will keep telling myself NOPE until I truly can't otherwise deny it!
RadagastRabbit - I am so sorry to hear about your friends. This disease is horrible. My best friend just went through a mastectomy and already had a partial hysterectomy in the past two years. I am praying she does not become a stage 4'er too. I am amazed and shocked at how many people I have heard from who have had that happen to them. I went from nothing to de novo MBC with bone mets. I just don't want her to have go through it AGAIN because she is already going through this with me and by my side as my Thelma to Louise. ARGH!
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LovefromPhilly, I’m sorry to hear of your progression. It’s a big adjustment to go from years of stability to then having to change treatment, so I feel for you. I know how I felt when that happened to me. Hang in there. My thoughts are with you.
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