Ibrance (Palbociclib)
Comments
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Sonya,
Try to remember to take a vacation from cancer and have fun.
Amy
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Does anyone have recommendations for thinning hair? I am on 5th cycle and am really noticing the thinning now. I had heard of biotin and onc said ok, but dib823 I thought you said there were possible concerns with it? Any suggestions would be appreciated. Thanks!!!
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Shetland, I did a fairly standard "early" stage treatment protocol. Surgery, four A/C, 33 rads with 8 boosts, and then aromasin. Mets popped just shy of five years, and we added Faslodex immediately. Back then it was just one shot, no loading doses. Almost five years later, it was no longer effective for me, and I have moved on with mixed success.
Hope this is helpful,
*susan*
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Yes, it is helpful, Susan. Knowing that even after an aromatase inhibitor failure, faslodex worked for five years, is encouraging. I hope your current treatment will work for a long time.
Singlemom1, I'm afraid to say it, but after having no hair problems for many months on Ibrance, lately I am losing more hair in the shower. I had them check my thyroid, and it was normal. I'm trying to add more de-stressing things to my week in case stress is contributing.
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singlemom, I guess the research re. biotin doesn't support my concern about it possibly helping cancer cells to grow. Someone (sorry, I've forgotten who, but possibly Sonja) posted some links with opinions from reputable places like MSK. For now, I'm content using a biotin enriched shampoo that I think at least helps plump up what I have. I also expressed my concerns to my stylist when I had my hair done on Saturday, and after he did it, he told me he used a less harsh product this time -- even though I went a few shades lighter with bayalage type highlights. The brittleness has greatly improved and the falling hairs have been much fewer in the past two days. Deanna
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I mentioned that I had a brain MRI early this month. No brain mets (yay), one possible skull met (but PET scan reader did not mention it-follow up with MO next Monday), but PCP said I have a "severe sinus infection." Saw the ENT yesterday. The infection is in my sphenoidal sinus (the sinus behind the the sinuses) and that is very unusual. I'll be on an antibiotic for two weeks then have to have a CT scan. His last question was 'have you ever had sinus surgery?' Uh, oh!
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WooHoo to no brain mets, Kaption!!!!!!!!! What makes you think you might have a skull met if it wasn't mentioned on the PET report? And I'm glad you found out about the sinus infection. Hopefully the antibiotic will knock it out and you'll feel so much better! Hoping you get only more good news on Monday!
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Thanks, Deanna. The MRI reader said he saw something that could be a skull lesion. I have not seen that report because it was done at a different than usual location. The PET scan was done after the MRI and I read that report. No mention of a skull met. I have my regular apt with MO Monday. She can explain it all.
Two main points: no brain mets and weird sinus infection.
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Great news Kaption, no brain mets! Yay! Do you ever get bone scans for your bone mets? You mention PET and MRI so I was just wondering. I've never had a PET scan. They don't do them at MGH (Massachusetts General Hospital). I've had MRIs specifically for my spine and my breasts when I was first diagnosed. The breast MRI is how they found the bone mets on my sternum and they sent me for a bone scan where they saw other lesions in my spine, pelvis, iliac crests, ribs. My MO always tells me that bone mets are difficult to read. I get bone scans every 3 to 4 months. I always ask about my skull. So far nothing there.
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Animalcrackers, I'm not positive on the reasons, but I get mainly PETsand MRIs. I have not had a bone scan in a long time. I believe my RO explained that the PET shows the bone met activity (up takes) and keeps an eye on spreading to organs. We know where the bone mets are (all over) so the person who reads the PET scans knows where to look. When I had new, severe pain in my left femur they used x-Ray and MRI to make sure there was no broken bone (or about to break bone). I will ask about bone scans though. mAybe others on the board can chime in. I know each scan has advantages.
Does your bone scan involve nuclear injection like a PET? Guess I'm not clear on what a bone scan is.
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Thanks Kaption. In addition to the bone scan I also have CT scans of the chest, abdomen and pelvis. I get them all done in the same day. The CT scans also show some bone results. It's just interesting to hear how everyone is monitored. I know we must all wonder if we could be doing more and if we are missing anything. I'm especially sensitive to that because they would not have caught my mets had the surgeon not decided to send me for an MRI which I'm told by both my MO and my surgeon that it is not a common practice. She was only sending me for the MRI to check both breasts for extent of the disease. The radiologist happened to notice an abnormality on my sternum. They sent me for a bone scan to be thorough. They really were not expecting to see anything. Everyone was shocked that the bone scan showed lesions. So had I not had that MRI, I would have gone through neoadjunctive chemo, rads and lumpectomy for no reason. I was already stage IV and would not have known until who knows when...
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Kaption - sorry I forgot to answer your question on the bone scan - yes it is a nuclear injection. I get injected first and then have to wait about 3 hours for it to work through my system. Then I lay on a table and have my entire body scanned - takes about 30 minutes. For the 3 hours that I'm waiting I have the ct scans.
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Kaption, I also do not get bone scans. I had one to diagnose the original mets but none since. I get CT of chest, and, pelvis every 4 months. I have had one pet scan, my onc would like me to have another since it will give her more information about how active my bone mets are..but insurance will not pay unless I have a "bad" CT scan. CT gives very limited information about bone mets, onc says Cancer could be completely gone in an area but will still show up on CT cause the area is scarred from the Cancer. Hard to tell what is active vs healed areas on CT. She will push for the CT scan in June, scan in Feb stable
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I think I'm confused about terminology. My PET scan is a nuclear injection, sit for an hour, then do a 25 scan in a special CT scanner. Maybe we are talking about the same thing. Bone scan=PET scan?
Lynnwood, I'm on Medicare and they have never questioned a scan, thank goodness.
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Kaption, PET scans and Bone Scans are not the same, but I have been under the impression that I get both a CT and a Bone Scan (same protocol as AnimalCrackers) because my insurance company will not approve a PET scan, which I think gives much the same info as the other two combined. And just to make matters really confusing, I believe there's also something now called a PET-CT.
With a PET scan, you have to wait very quietly for an hour while the injection works. As I recall from the one I had in 2008, I wasn't even allowed to use my cell phone during that hour. With a Bone Scan, you're free to roam during the 3 hrs. it takes for the med to get assimilated into our bones, and getting the CT while you wait can be a good use of that time.
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Thanks, Deanna. Yes, I have to be very still. No iPad or phone. I looked at my last report. It says I had a whole body PET/CT imaging done. They check glucose before injecting the "tracer."
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Kaption, I get my scans at UCLA, but my local onc has mentioned the PET/CT as being equal in information to a CT+Bone Scan. Not sure if that's exactly true, but it sounds like what you're getting is the latest and best available.
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Kaption, bone scan and PET scan are different, though both use an injected radioactive tracer. For PET it is radioactive sugar, which is used more intensely by cancer, so this metabolic activity shows up on the scan. The time between injection and scan is about an hour. For bone scan, the tracer is taken into the bones in greater quantities where there is bone remodeling, and emits gamma rays to be picked up by the scanner. The time between injection and scan two or three hours. CT scan is like a three-dimensional X-ray that shows the size and shape of things. Sometimes a contrast agent is used. MRI is just too strange to describe. (This is all just my understanding as a patient. I have no credentials in this field.) My onc believes that the PET-CT that monitors my liver etc. will reveal any future bone mets.
So glad to hear your brain MRI showed no brain mets. Sinus infection, really, as if you didn't have enough to deal with? Maybe the antibiotics they give you will be the kind suspected of working against cancer. That would be good.
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Thank you, Shetland for the clear distinction.
I'm hoping the antibiotics work, that I'm not allergic to them (like I am most antibiotics), and I don't have to have sinus surgery!!
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thank you deana for info about hair thinning. Just to also add my Info on scans. I had CT scan on lungs, pelvis and stomach. I also got one bone scan. I have never had a PET. I hope bone scan is reliable as I have had long term pain in thigh that they can't find reason for. I am having 2nd set of ct scan in May on chest, pelvis and stomach. No order for bone. Had MRI for brain but nothing else since reoccurrence. Wonder why some get MRI and some stick with CT scans.
Kaption, hope the antibiotics work well for you and that you are feeling better soon.
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Thank you, singlemom.
I hope you get answers on your pain.
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Kaption-Great news on no bone mets!
Babs
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Babs,
Thanks, but it was no brain mets. Still great news.
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I meant brain mets-My typing sucks sometimes!!!!
Babs
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Kaption great news- what a relief!! Dani has Pet/CT just about every 3 mos, and MRI follows immediately for the brain (she has lesions in the skull,and actually had Gamma Knife to the sphenoid area). Also MRI for the spine. And sometimes CT also. Bone scan was only done at time of DX. And yes, it's fantastic that we are in times that they are using MRI after suspicion of cancer in the breasts. Because of the MRI my daughters that needed a biopsy did not have to go thru major surgery but instead had MRI guided biopsy, after suspicion was found. I always wonder also, I wonder the other way if Dani needs bone scan. But I have seen the Pet/CT and I can't imagine finding more lesions, it's absurd the way it looked the last time as it it. Imagine Rockfeller Center in Christmas time yep.
I was actually thinking she is in her 3rd round with Ibrance and she will prob due for a Pet/CT in Apr. Agh...
Sonya hope to hear from you that things are going well.
Deanna very welcome about the teas, we bought some ginger tea today let's see if it helps her some. GN everyone
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Kaption-Congrats on good results. I have only had spine MRIs and CT scans. I just had a CT scan of chest, abdomen, and pelvis with and without contrast and it came back clear. I also had an MRI of my spine and it came back stable. Started Ibrance and Femara 9 months ago (stage iv de novo). My Mo said we will do another MRI in 6 mo and CT again at a year.
Singlemom1-you wondered why we get different scans? I know my MO doesn't like radiating his patients if he can avoid it so that's why I get mostly MRIs and CTs less frequently. I think that it's a judgement call based on the location of your mets. Mine are only in my spine so I guess that shows pretty well on MRI. I've never had a bone scan or a PET scan.
AnimalCrackers-I had a somewhat similar experience getting dx. I had already done a mastectomy when I found out I was stage iv de novo. I had a breast MRI before that surgery that my MO ordered without me having to ask for it. I have a friend who is a radiologist who testifies in bc malpractice cases and he told me to be sure and have one. It showed widespread DCIS plus the main tumor so mastectomy not lumpectomy and lymph nodes looked clear. But during the surgery 10/13 nodes had cancer so when I was sent for further tests (CT/MRI) the spine mets were discovered--5 days before I was to start chemo. So I have done Ibrance and Femara instead and am stable right now. So, yes it is really critical to get a breast MRI before doing anything.
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Ellenlou, great news on your scan results! We must have started Ibrance about the same time. I started last June 1 st.
Your DCIS dx is interesting to me. I started out, 11 years ago with DCIS in left breast. Then DCIS in right breast in right breast in 2012. Then mets the next year. Anyway, I get concerned when I hear discussions and research that says Stage 0 should not be considered cancer
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Kaption-mammograms sure didn't pick up my cancer very well. They could see some calcifications a year and a half earlier but were just watching them and them boom-lump--but that is all the mammo showed. But the breast MRI showed large diffused areas of DCIS so the lumpectomy that was planned (based on mammo) was changed to a mastectomy. (I was 59y)
I think maybe if you are young, DCIS should be removed or certainly treated. If someone is much older, then maybe it will never develop into IDC and could just be monitored?
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Ellenlou, I'm thankful my onc kept a close eye on me even though I was Stage 0 twice (both high grade)and even though it metasticized. No one there dropped the ball. But I do worry about the suggestions to treat Stage 0 as not real cancer. I read some of the discussions on the discussion board on MBC and don't want to scare others.
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I get a PET-CT every 4 months since diagnosis almost 5 years ago. I only get an MRI if the PET dictates there is something more to look at. I had one 10 months ago when the PET picked up some small progression in the bone. I asked my ONC about bone scans, which he said is completely unnecessary for me because ido PETs. I'll probably do an MRI n a few months to confirm my spine met is completely healed.
Kaption, yay no brain mets!
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