Ibrance (Palbociclib)
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Chicagoan, I enjoyed reading your post, it was full of energy and hope. Thanks for the recipe, I’ll make it for dinner tonight!
Candy, it seems your new MO knows what to do, I am happy for you for this switch.
Re to hot flashes, mine comes anytime I start any activity, walking, talking, during sleep is more annoying and longer. I have a couple of ice packs, put them on a side table near bed for night hot flashes. Sometimes a mild-cold shower before sleeping helps as well, if I have enough energy! But when I have anxiety of scans, results, dealing with useless clinic staff, I experience more hot flashes.
Re fatigue, my MO reduced dosage to 100, on my cycle 9, I feel my energy level is much better, actually I started calcium+vitamin D this month too (MO just remembered he forgot to tell me!!), so probably both boosting my energy level.
Best wishes everyone
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I too have the dread/weird feeling letting me know a hot flash is coming.
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Stopping in to give you all a virtual hug and letting you know you're all in my thoughts and prayers.
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Confusing scans /interpretations of scans. Oncologist today said that the CT last week showed overall improvement since the scan in April. Sounded good until she hedged when I asked about the size, saying that size wasn't as important as the overall picture, since the radiologist might not look at the exact same area. And she had to look harder at the results to find the size. So Sept 2019 2.5, Jan 2020 (can't find record), April 2020 7mm, Aug 2020 1.9 - sounds like it increased by 2.5X. Has anyone else ever been told that "size" isn't the main thing to look at? Is there "much" variation with the CT scanner and rediologist interpretation? Scans in April and August same facility, scans in Sept and Jan at two different facilities. I thought they were more precise. Scared about what might really be going on and the value of scans.
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BlueGirl- Hope others will chime in but here is my thoughts. I get a CT every 3 months. I cannot get PET unless they see change in CT. I always thought that the size/measurements was computer driven- that the computer measured the tumor and spits out a report with the measurements. Not so. The radiologist manually measures the tumors. And you may get a different rad each time. So the "human factor". So.. for example, I may see report that says liver tumor is 11mm X 7mm. Then next scan says 14mm X 9mm. Oh my, it grew. Not necessarily. The difference in rad readings may be a few mm off from each other. And a few scans have just said "similar to last scan" and not gave actual measurements. That is how my center does it. Not too scientific in my book. I am going to a new center now, so will be interested in their report in Sept.
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Good news out today, published in CELL!!! (Cross-posting from clinical trials thread)
A protein called TREM2 is expressed in macrophages that infiltrate solid tumors and protect them from T cells that want to get in there and kill them off. Once they got rid of the TREM2 gene in mice, the macrophages no longer targeted the tumor, and the cancer was killed off by the immune system, especially when they threw a checkpoint inhibitor (PD1 antibody like Keytruda) into the mix. Huge effect. There is an antibody to TREM2 protein that also gives the same result, and the antibody is already in clinical trials for a different reason, so they will be able to go quickly to clinical testing. These TREM2 expressing macrophages were found in 200 cancer types, and were associated previously with shorter overall survival in breast cancer.
https://www.cell.com/cell/fulltext/S0092-8674(20)30878-3
https://medicine.wustl.edu/news/immunotherapy-resi...
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Okay, folks, I've got a new one for you...
A few days ago, I developed a sore inside of my mouth that didn't hurt, but I could feel it with my tongue. Last night was the end of my current 21 days on Ibrance. This morning, I woke up and the L side of my face/jaw was kind of sore and a little bit swollen. Dr. Google told me that it could be a salivary gland infection, which can be viral or bacterial. No idea if it's related to the mouth sore or not. Salivary gland infections can also be caused by extremely dry mouth and/or dehydration (welcome to Ibrance).
Has anyone had anything like this develop while they've been on Ibrance? If so, what was the upshot? I'm not terribly uncomfortable, and I've been drinking water and other things like crazy today. Debating whether I should call the doc about this.
Thanks.
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Candy - Thank you for the reply. But it is disappointing that it is not more computer driven. I am very glad that a human does look at, but also very frustrated that there can be so much variation. When it seemed to shrink, that was the first think the oncologist would say, and now she talks about the big picture , what ever that means, and depending on where it is measured. Overall the radiologist who did the interpretation said it looked better than last time. I guess I should celebrate and not go looking for bad news, but I do feel a little depressed.
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BevJen, I started getting what felt like a canker sore between my lower lip and gum about 4 days before completing me 2nd cycle of Ibrance. I got some "Orajel for all Mouth Sores Antiseptic Rinse" at my local grocery store. It seemed to help, or maybe that I finished the cycle helped. I think it has hydrogen peroxide in it since it kind of foams up when I'm swishing it around. Depending on today's blood work, especially my ANC, I'll start my 3rd cycle tomorrow. My ANC dropped to .44 at the end of my last cycle, so hopefully it's improved a bit.
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I just received the results of my Pet scan and it just said multiple lesions is skeletal T5, L3. L4. L5. I believe Ibrance/Faslodex has fixed my stomach issues no mention of cancer in my liver, pancreas, obstruction in intestine. I will ask my onco on Thursday if I am doing much better . I don't have any pain in my bones so I will ask if that spot on my left (CMS-HCC) is gone.
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Blue girl, I also am confused by the scans Different radiologists report different areas. When diagnosed my breast tumor 3.50 cm and a second one was 1.50cm in same breast. none of the hormonals worked on me. Damn thing started breaking thru the breast tissue and began live on my skin. Onc was freaking out and said IVchemo. I said No but of course, they talked me into it. The mass shrink down to 2.5 after 5mos. Onc stopped it because the neuraphy in my leg was getting too bad. I was put on Zoloda which has been easy on me. The scans keep saying no progression but no shrinkage either The mass on my breast is diffently bigger but that doesn't seem to bother ONc. Last visit with him in experation, I asked him, "at the end of chemo it was 2.5 and now its 4 cm how can you say no progression? He very casually said because that tumor isn't really that big. Huh? He said the ct shows it full of calcifications and dead cancer cells. He most likely there's lot of scar tissue in it too. Now you would think that he would have shared that info mos ago. Oh and the second tumor? Hasn't been any mention of it for mos.
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Sunshine, It's not the mouth sore that I'm wondering about. It's that my salivary gland on the L side of my face seems swollen. I use that peroxide rinse when I get mouth sores and it works well for me. Just wondering if I'm further falling apart which has caused this latest weird thing. BTW, I just finished up my cycle last night -- boom. Here comes another annoyance.
Snooky, I'm with you on different radiologists reading or focusing on different areas. For example, I've had a gall bladder stone show up on scans for many, many years. Every few scans, the reading radiologist mentions it. Where does it go in the meantime? And I've also gotten some reports that talk about tiny cysts in various places -- pancreas, kidney, wherever. But why aren't they mentioned on every report? Who the heck knows.
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BevJen, I get mouth sores, as well. They tend to be more at the end of the cycle. I have had tiny bumps that were not sore, but no swelling and would go away quickly. I know that you said it is not a sore. The swelling would be concerning to me, sometimes meaning infection. It probably wouldn't hurt to mention it to the doctors.
On the scan discussion: I have my done every three months and supposedly they measure the same three and always show the measurement of last and the current measurement (ie last scan 7 cm now 5 cm). I always get a copy of my report. In March, I go for my results and they said great news, results show great improvement. Got home and read the results and it said previously month 30 cm (yes 30 cm) and now 5 cm!!! I never knew I had a 30 cm. Also, the other two did not match up to the previous scan. When I called they said it was a typo. I never got a new report. But when discussed again and asked are they measuring the same. They never really answered, but said they would have my doctor review the next one in June. Turned out one was slightly larger but others improved. I have others, but was told they are only watching the three largest. So my take on this, is always get a copy of your report and ask questions if something doesn't look right.
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Re scans -- I had an MRI of my spine last Saturday, and as Kareng suggests, I always get a copy of the report (and usually the disk as well bc most centers will give you that for free. I keep them in case I want to get a second opinion on something.)
Anyway, in the impressions on the SPINE scan, the radiologist noted a nodule in my left thyroid lobe. I guess when they did the films, they went a little too high and caught part of the thyroid in the spine scan. Anyway, I have a multi-nodular goiter on my thyroid which affects my thyroid function, and I've known about it since about 2004. I have sonograms every 6 months - year to check on the size of the nodules, and we know that one of them is right where this one was identified. I called my endocrinologist, read her the part of the report regarding the nodule, and she concurred -- it's one of the ones that we watch all of the time. Had no relationship to the spine stuff or to breast cancer.
So it is important to look at those reports and digest them. I know this isn't everyone's cup of tea, but it can be helpful to what's going on with your BC -- or not.
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I have been on Ibrance/Falsodex since Jan, 1st line of treatments, my tumor marker CA-15-3 started at 65 slightly dipped to 55 by June, then July 70 and this month 84. Needless to say I am having scans soon to include a bone scan which was Negative over a year ago. In late May my CT was good 60% reduction in areas and all stable. I have no symptoms. Not sure what this can mean if not progression. Oh I hope I can stay on this TX, I have just gotten use to the side effects etc. I have read that when tumors are dying they cause a flare and can cause some increasing TM's? I will be stated my 8th cycle on the 18th. It that to many cycles for a tumor flare
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Imagine: I can certainly relate to anxiety over rising TMs. Mine stayed under 20 for over three years on Ibrance/Femara. Now mine have slowly risen and I've been on Ibrance/Faslodex for a little over a month. Just finished the loading bi weekly dose and will have the monthly injections. My TMs just went up to 49. My MO says to give Faslodex a chance. I hope your rising numbers are due to dying tumor. Hope you do well on Ibrance and your next scan looks good. Just wish there were more encouraging sounding treatments in the pipeline, more options for MBC.
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Cure-ious, that is such promising news! I’d like to get on that tria
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It is frustrating that scans can have so much variation. What the scanner sees, how and where the raidologist interprets. I don't think the tumor is "moving", but different raidologist seems to "measure" at different points, and why they choose to measure where they do isn't realy explained. Better than last time is not that comforting, especially if it seems to have grown larger because of where measured. The other night I heard an interview from this ND, Nalini Chilkov, and was impressed. Her website might not be as impressive as the interview. https://www.integrativecanceranswers.com/dr-nalini-chilkov/ She stressed how she works with the oncologosts, has them focus on the cancer while she focuses on the patients health from the cancer and effects on treatments on health, making sure what she does is not interfering with what the oncologist does. If she was not in southern California, I would probably consult with her to see if she would take me on as a patient. . Another interview with Dr. Ralf Kleefon the same program was also interesting where hyperthermia is used sometimes in combination of lower doses of chemo drugs than the standard calls for. The particular treatment is ony allowed in 3 countries in Europe at this time, Germany, Austria, Sweeden. Here is an article, not the interview https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6469443/ It is tempting to try something other than the "standard of care" when you start having doubts about the standard.
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BlueGirl,
I consulted an ND, but one of the issues I faced (besides the practice being a bit too crunchy FOR ME -- might be fine for others) was that much of the treatment was out of pocket bc most traditional insurance plans do not cover naturopathic treatment. I found much of the info that she dispensed very interesting, and did a lot of reading about it. Another thing that is widely used in Europe but not used much here (and not generally covered by traditional insurance) is mistletoe treatment. BTW, hyperthermia is used in some clinical trials in the US (University of Maryland is one) but its use is very limited and only for some very specific circumstances.
Have you looked into the Block Center outside of Chicago? Dr. Block is an integrative oncologist (M.D.) who incorporates principles of integrative medicine into his practice. He does virtual consults (though at a steep price). You can also get his book, which explains a lot of his principles. It's quite interesting.
I too am amazed at the variation in radiologist "readings" of scans. The other thing that absolutely fascinates me is the "cloak of secrecy" around radiologists. Two years ago, I tried to contact the radiologist who had read one of my scans. Could not do it -- this in contrast to when I've tried to contact other professionals involved in our care, etc. -- such as pathologists. I just don't get it. Even my MO seemed disturbed when she had to contact a radiologist who had read one of my scans to ask for clarity, and then my impression was that she didn't get a whole heckuva lot of info back to illuminate the original report.
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BevJen - you are right, NDs and what they recommend are very unlikely to be covered by insurance, so it can get expensive. Finding the "right" ND might be even harder than finding the "right" DR since their care is often not part of the standard of care. Since it is often nutrition/lifestyle based, also not as well documented or backed up by studies. If you have enough nedical expenses, you might be able to include it as part of the very stingy deduction on taxes. With some of the "alternative or clinical" treatments, it is often presented as a last resort, when maybe it should be the first or second resort. Seems like the "standard of care" is not as successful as presented.
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Bev Jen
I called the office of Dr. Block, for 1875.00 you get a 60 minute consult with his PA to go over your case. Then a 60 Minute consult with Dr. Block, then a 60 minute with their dietician and finally a consult with his wife to go over his recommendations and other issues. I was told the lab work can run anywhere between 5000-7000 dollars, OMG. If you can have your PCP order the labs he wants you can bill your insurance. The 1875.00 isn't so bad it is the follow up labs etc. I would feel comfortable with him because he is a MD and not just a ND however I wonder how hard it would be to get your own doc to order that many blood tests.
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Karen,
I know that santabarbarian, who is on BCO in different threads, used Dr. Block and LOVED him. She did the remote consult, and she's also done follow up(s) with him, which are at an additional (much smaller) charge. She was not, however, Stage 4. I do recall her saying that she only had to get one additional blood test that she had to pay for, unless my memory is failing me. You may want to PM her to find out further details.
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A new research report, published in the journal Science, is describing how certain species of gut bacteria can enhance the efficacy of cancer immunotherapy.
Across four mouse models of cancer, the researchers isolated three particular bacterial species associated with positive immunotherapy outcomes - Bifidobacterium pseudolongum, Lactobacillus johnsonii and Olsenella.
https://newatlas.com/science/gut-bacteria-microbiome-cancer-immunotherapy/
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Cure-ious-Thanks for posting that fascinating study. Another reminder to keep eating that yoghurt!
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Cure-ious - thank you for posting. In addition to yogurt, these foods also have Lactobacillus and Bifidobacterium
- Kefir. Kefir is a fermented probiotic milk drink. ...
- Sauerkraut. ...
- Tempeh. ...
- Kimchi. ...
- Miso. ...
- Kombucha. ...
- Pickles.
Trying to find food source for Olsenella ...but feral chickens, pig feces ?
Here is the original article cited by newatlas.
https://science.sciencemag.org/content/early/2020/08/12/science.abc3421
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BlueGirl - Im going to pass on the pig feces. It’s a QOL issue. 😂😂
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RK - That's a good place to draw the line!
I'm making yogurt today. I'll need to try to vary my yogurt starters to try to get the right bacteria.
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I had a bone scan last week and got a stable report where they see nothing concerning and there remains no scintographic evidence of bone disease.
I’m in cycle 51 of Ibrance and Letrozole and feeling very, very grateful.
I still need to have my CT of chest, pelvis and abdomen, I hate that test because of the barium
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Jen,
My center has gone to these bottles of what look like water (and actually taste like it). Maybe you can ask if they have something other than barium when you are preparing for your test? I have a super sensitive sense of taste and smell, and the "drinks" are in these bottles that have vile tasting plastic, so they will put crystal lite into the mix for me if I ask. Makes it much more palatable.
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Jensgotthis- Woohoo for the stable bone scan & cycle 51. Praying the CT is stable too.
I always drank a lemonade flavored drink, but I switched to a new MO/new facility and they say no drink contrast, just IV contrast. Hum. Hope they can see what they need to see without the drink. Maybe you can ask about either no drink or like Bev said, something better tasting.
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