Ibrance (Palbociclib)
Comments
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momdin, welcome.
My bone pain was relieved greatly by radiation. The RO said I would be coming to him often for a tuneup. Not sure if he meant as new tumors appear to zap them away before they get bigger or just as they caused too much pain. Dont want to do it unnecessarily in case you need to radiate the area in the future for aworse situation.
Gailmary
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re : the primary tumor. I admit I'm a little mystified just what that is.. Would that be the tumor found 10 yrs ago in breast upon initial diagnosis?
Then Good - its gone. Cause only other tumor I have is this 6 cm lesion in humerus the MO suggested I think about replacing. The rest of the team was opposed to the idea. I have a hard time wrapping my head around the idea of replacing bones or joints.
Gailmary
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gailmary, I think I would consider having that humerus replaced and get rid of the tumor if it's your only one. I have a friend who had a rib removed as it was her only bone metastasis. It's been many, many years (more than 10, I know) and she's never had bone mets again!
You can tell people you got a new funny bone!
Love from PatGMc
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Can someone explain the thought process behind leaving the primary tumor, to begin with? I had mine removed during the surgical biopsy (the surgeon suggested it beforehand, and we agreed - that if it was contained enough that he could take out the whole thing, with clear margins, he would), and then when I got to Sloan-Kettering, my onc told me that was unusual. I didn't think to ask why - can't unring a bell, right? - but now I'm wondering...
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Cure-ious, thank you for posting the link to the study. For those who have had the primary tumor removed, should give them peace of mind. For those who didn't and are now fretting that they did the wrong thing, I would point out the major caveat in this study - and a lot of other retrospective studies of a similar kind - which is selection bias.
The study looked at the survival of women who had their tumor removed versus those that did not, and found that the ones that did fared better. But we have to think about how those women were selected for surgery (this was not a randomized study). During the time period analyzed, the guidelines suggested no removal of the primary, unless going for curative intent (for example oligometastatic patients). I would venture a guess that the patients that were selected for surgery already had a better prognosis than those that were not selected, and the overall survival results reflect, at least in part, that difference.
I think it's becoming pretty clear that for oligometastatic patients removing the primary (and sometimes the mets, if they are accessible) should be the standard of care. I'm just not yet convinced that for someone with widespread mets removal of the primary would do all that much to increase survival. I'm not an expert in stem-ness, but wouldn't the mets also have stem cells? If there is evidence that the stem cells are found only in the primary, I will push harder on my doctor, who was adamant that once there are mets all over the place there's no point in removing the primary - the mets wouldn't need the primary to spread and/or elude treatment. This seems to be supported by the fact that so many women that had their primary removed and had chemo and hormonal treatments still have the cancer metastasize years later, suggesting that some micromets were present at the original diagnosis and went dormant, eluding treatment, for many years.
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maybe I read the article incorrectly but didn’t study HER2+ folks only?
I did not have primary tumor removed (I’m hormone positive) and it was pretty big. My MO kept telling me that removal of tumor being helpful was anecdotal and he did not find in his 30 years in practice that it made sense at this point. I do have extensive “innumerable” bone Mets so perhaps this makes sense to what Piggy wrote above.
Happy Thursday everyone! Off to get my monthly blood draw!
Love,
Philly
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I am er+ pr+ Her2-, I had the primary tumor taken out after neoadjuvant chemotherapy which was done to try to shrink the tumor—it did significantly—so I was able to have lumpectomy and not mastectomy. I also had 33 rounds of radiation and then was on Arimidex and remained stable, no progression and even nead for 8 years. It was initially thought i had stage ii bc and I was getting things lined up for the chemo when a PET showed the mets. The chemo was never taken off the table like has happened for some women after learning of metastases.
I'd like to thank everyone for your support while I'm starting the Ibrance. You've all been so helpful and it's really been a godsend to me. Have taken the meds 8 days now and things are good. Mild nausea and light headed after taking in the morning with food. Was prescribed antinausea meds, finally thought to take one yesterday which seems to help, took one today, too.
I was sooo fearful Ibrance was going to immediately make me throw up, drain my energy so I couldn't get out of bed, that my white blood cells would quickly plummet, I would pick up an infection somewhere and spike a life threatening fever, etc. I think dealing with mbc for so long makes my thoughts always go to worst case scenario. I know you've all mentioned the “Ibrance dance" and different side effects may pop up at different times, but I'm grateful that the beginning has been uneventful. I will go for bloodwork next Wednesday and will be curious to see how the wbc is.
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hi MrsDivine,
I’m so glad it is not terrible for you so far.
I took anti nausea meds on and off for about the first 6 months until I was able to keep having longer and longer bouts without nausea and then it
Now I don’t need them anymore. Which is great! But I was so grateful to take them as needed when I did need them! For me they also calmed my anxiety down a bit too which was a bonus!
Love
Philly
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Thank you, I will speak to my MO
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Piggy, as a statistician, I appreciate your seeing that design flaw in the primary tumor research. I saw it but couldn't have explained as well as you did. I'd like to see some co-variance done with the data although that would not fix the underlying flaw.
Divine, are you saying you didn't believe us when we said the SE's were mild? (JK) I was thinking you might do better nausea-wise if you took the Ibrance at a later time, like evening/dinner. I've always had more trouble with nausea on an empty (less full) stomach. I don't take ANY meds with breakfast. I have had several doctors tell me that taking something at night means you might "sleep through the side effects." I never put any stock in that idea but there it is.
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I used to take my Ibrance with breakfast, and it was fine for me...however I recently switched to taking it at night and maybe it’s a placebo effect or something but I am sleeping so much better
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Divine, I'm glad you're off to a good start with Ibrance. If you take it in the morning, wait a few minutes after breakfast and make sure you have a good breakfast, a decent amount of food with some fat. I like some yogurt and a blueberry muffin with lots of butter, lol. Anyway, if I wait 10 min or so and then take the Ibrance it "settles" better.
Momdin, hello! Are you getting Xgeva shots? The bone mets do hurt, but I think you will find that after a couple of cycles of the meds and Xgeva that they will improve and hurt less. My oncologist said to take tylenol and to avoid ibuprofen and aspirin except very, very occasionally.
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Ciaci, Gailmary, and others -- The study which Cure-ious referenced was on de novo patients -- i.e those for whom one or more sites of metastasis are found at the same time as the first diagnosis of breast cancer. In this case, the tumor in the breast is referred to as the "primary" tumor.
I believe one or more earlier studies had indicated that there was *no* advantage of removing the primary tumor. In typical cases of breast cancer, the breast tumor is removed in the hopes of keeping the cancer from spreading to other parts of the body -- which it hasn't done already. In the case of de novo, the cancer has already spread. A school of thought had developed that there was thus no compelling reason to remove the breast tumor -- one could avoid the trauma of surgery, and the tumor in the breast was an easy vehicle from which to assess whether treatment was working (it's very tough to tell initially if the metastasis is bone only). There was also some speculation that removing the breast tumor via surgery had a downside -- the process could release cells which might lead to additional metastasis.
I find the study Cure-ious pointed to very interesting and (if I had a primary tumor) would like ask my MO whether it was worth considering removing it. I don't think I'd be terribly concerned, though, because of this one small study.
FYI I believe my MO is (or at least was) very much in the camp that the primary should *not* be removed in the case of de novo.
Btw, I have just returned from meeting with her to review my six-month scan results. She is at a large breast cancer treatment center in NYC. Once again she and her colleagues are *very* upbeat about all of the research progress being made. Thanks to this board I was able to engage her at a reasonably knowledgeable level -- I get the impression that the great much of what we are discussing will be moving into the clinics pretty quickly. Very uplifting!
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Heleas401
"Has anyone seen the news that came out today on CNN that shows that surgery for the primary tumor may give women with stage 4 cancer a 44%;better chance of survival? Makes me wonder if we've all been given the best advice not to remove the primary tumor."
I will have to google this.... If any one as a link to this would appreciate, I have MBC HER2-positive
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Found the article..... This does NOT Give me Hope.... I am having a DM in May....
Yet in stage 4 metastatic breast cancer, "it doesn't make much sense to cut out the cancer in the breast if there is cancer in other parts of the body," said Dr. Monica Morrow, a surgical oncologist and chief of breast service in the Department of Surgery at Memorial Sloan Kettering Cancer Center in New York, who was not involved in the study...
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jaycee and ichange, taking Ibrance at night does sound logical to try and sleep off side effects, and next cycle, I may try that. One reason I like the morning is I remember to take it and at the same time each day. In the past I’ve tried remembering to take other meds at night and found it harder to maintain the routine. But I’ll reconsider.
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Divine,
Just another person to chime in...just what you need, more to think about eh? I take my Ibrance at 1200 with lunch.
Gumdoctor
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gumdoctor, I like your style.
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Hi All! I wonder if any one has issue with your tongue while on Ibrance? I'm on my 2nd cycle & my tongue looks weird, like peeling off. It doesn't hurt yet. Please help! Thanks
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42Young -
What color is your tongue?
What color is the part that's peeling?
Gumdoctor (periodontist)
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My tongue looks normal color, just small part of it is peeling off. It's not red of bleeding at all. Just looks like losing a layer of skin.
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For those worrying over the decisions made about removing primary tumors when the BC has already spread, may I give some advice?
You made your decision based on the best advice you had from the doctors you trusted. Please don't beat yourself (or them) up about the fact that things have changed. In my 25 years dancing around with this disease, I've seen so very many changes. They used to come slowly but now they're happening by leaps and bounds.
When I was diagnosed in '94, my friends with later stage disease were getting stem cell transplants. Every oncology office was trying to buy the technology to do their own. One of my friends sued her husband's employer to pay for this procedure to treat her Stage 2 disease and they did. It was a long, drawn out, debilitating process.
Since then the surgeries, the chemos, the hormone therapies....all of it has changed. No one with BC gets a stem cell transplant anymore. Eventually no one will get chemo, I'm betting. I think about my HER2+ friends who have been able to live long lives with low-side-effect Herceptin and its more recent sisters.
Not long before my experience, women were getting those mastectomies where they removed all your arm muscles, almost guaranteeing lymphedema. Now look how many don't get mastectomies at all.
We could make ourselves sick worrying about what we did or didn't get or how it should have been.
I've tried for a long time to use this process: Make a list of all the options. List the pros and cons of each. Pray about all of it then go with what I have peace about in the morning.
I'll be over here praying along with all of you for that peace. It's what really matters.
And may the research continue by leaps and bounds which also matters.
Love from PatGMc
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42young, try natural yogurt for your tongue. It worked for me. Stony Field is my brand.
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I googled it & it looks like geographic tongue. Not hurt, red or causing any pain right now.
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42Young - Normally, cells from tongue would turn white before they come off. Examples could be after burning with hot pizza or hot coffee. The process is called sloughing. A one-time sloughing episode would generally heal in 7-10 days after the irritant exposure.
If it heals in the 7-10 day timeframe, then nothing to worry about.
If not, talk it over with your ONC.
Gumdoctor
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42young- when I occasionally got sores or pre sores I gargled with baking soda and it did the trick. If I couldn’t get baking soda I used salt. When things were better, I stopped. Also I think I am sensitive to sodium laryl sulfate a detergent in toothpaste-many people are. I switched to one without it ( most toothpastes have it, including most Toms and many sensidynes ) try Jason or pronamal. Must look at the box to see ingredients , not the tube.
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I have geographic tongue..Dont think I had it before ibrance but not sure..
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hi fam!
Not to be gross, but does anyone get some serious farts on Ibrance??
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Patgmc, thank you for reminding us of the history of breast cancer treatment and how far we've come. It really wasn't so long ago when “radical mastectomies" disfigured women and reconstruction was not an option. I remember how big stem cell transplants were for awhile and how grueling a process that was for women and not always successful. And, of course, the modest times when people did not even say “breast" in mixed company! Bc was only whispered about. It was shocking back in the day when Betty Ford and Happy Rockefeller were diagnosed with bc.
There was a TV movie in 1978 starring Mary Tyler Moore called “First, You Cry", a true life story of Betty Rollins, journalist, who learns she has bc and how she copes. First movie of its kind. I can remember the main character being in the hospital after surgery to remove her breast, and an upbeat older woman comes in her room and says, “Guess which one!" MTM has no idea what the woman is talking about and is surprised to find out that not only did the woman have a breast removed but that she had such a positive outlook on life. It’s a turning point in the movie. I feel like support from other women, whether in person or online, is so vital in helping each of us navigate all that comes with dealing with this disease.
And you're right, we cannot beat ourselves up about whether we selected the right treatment plan. There are different options and who can say a specific one works best. Too many unknowns. When first diagnosed, I thought there was one tried and true path of treatment only to find out they are numerous and varied.
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IChangedMyName, I think it's the letrozole. And it varies, depending on what company makes your generic! I never had a problem with the Accord brand my pharmacy always used, then three months ago, they substituted Breckenridge - what a difference!! Serious gas from the first dose. So glad I took my last one this morning, and tomorrow I go back to the Accord.
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