Ibrance (Palbociclib)
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Rose, I'm so sorry to hear you're having such a bad time. Hope you feel better after a short tx break. No answers from me, but hoping you will get some soon, along with a nice clear brain MRI!
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eelder - I initially had a PET/CT every three months. We found through those that my tumor marker is fairly accurate in determining my status and response to treatment so we went to PET/CT as needed based on my symptoms and tumor marker scores. My MO always does a PET & CT. As far as blood work - I was told that if you have regular lab work and have had normal creatinine levels in routine blood work within 3 - 4 weeks before the scan, you don't need lab work. They just use the existing results to determine if your kidneys are functioning properly before giving the contrast. They do take a drop of blood when inserting the IV right before the test to make sure blood sugar level is o.k.
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Thanks so much! This helps a lot. Sorry for all my questions... I was diagnosed March 30th and since then I've been on a crash course to learn everything I can about BC and what it means to be Stage IV. Not the route I was planning to be on getting ready to turn 40. "If you want to hear God laugh, tell him your plans...."
Anyone doing an alkaline diet? I hear a lot about the benefits with cancer prevention and maintenance. Wondering what your all thoughts are!
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Hello Ladies,
A good day and I'm very happy after seeing my TM's with a restricted schedule.
I've been on Palbociclib and Letrozole for 13 months, the majority of time 75mg with the 21 day cycle. This last month I was changed to every other day for 21 days, due to low counts, however, my TM's still dropped signicantly. My scans and TM's do correlate together . I was concerned about this change wondering if I would keep responding to this protocol, apparently lower dosages are effective.
Secondly, i am also seeing a cardio specialist who's practice is on how cancer drugs affect the heart. I want to know prior to any drug changes what effects if any, they may have. In our discussions we have touched on supplements, all my physician's don't consider them to have value and the ONC says no, they want to know everything you are taking because of drug interactions.
Rosevalley, you are inspiring, thanks for your posts.
Kathy0 -
I get a PET scan about every 3-4 months. My doctor wants to watch for any changes one-to-the next. I also right now am getting labs done weekly(cancer marker ones only once a month). Being done weekly as I've only been on Ibrance now almost 7 weeks and she's monitoring the blood counts very closely.
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When I get cat scans it doesn't matter if I had blood work the week before they make me redo. It's standard procedure at Dana Farber and my kidney numbers are always normal.
I'm doing vegan diet and just ordered alk strips to check my ph.
For anyone interested I am going to start a book club topic in regards to the book Radical Remission. Many have read it. I find it facinating. I will let everyone know when I post it.
Carol
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Here is the link to book club. Please share!!
https://community.breastcancer.org/forum/79/topics/845005?page=1#idx_1
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I got my ph strips today and did the salvia test per pkg instructions. It was 7.5 so I'm neutral on the alk side. I do one no no. A cup of real coffee. I have not added the lemon to the am water so trying that next. Maybe I will do green tea in am. Sigh.
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I will be leaving this thread. My ascites and N/V are much worse and I can only drink liquids. So swallowing a pill with food is out. I will be moving on to IV Taxol. Wishing you all great success with Ibrance.
LoveMaltes- good luck with the vegan diet. My daughter went vegan and has done it for a year after being vegetarian for years. There are lots of recipes on the internet and ways to make recipes vegan. It's doable. Some of the dishes are excellent and no one misses the meat. Some Cliff bars are vegan and there are quite a few cereals.
Steelrose- good luck hope you get some answers and feel better.
Blessings, fortitude and best wishes to you all. rosevalley
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Rosevalley - I'm sorry for the difficulties you're having. Wishing you a good response on Taxol, and hope you are feeling much better very soon.
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Rosevalley, I'm so sorry your stay here was so short. IV taxol is probably not on anyone's wish list for next tx, but I hope it will be helpful to you. Wishing you many blessings and peace of mind.
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Rosevalley,
Prayers and hugs to you.
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Rose- best to you. Join us in the radical remission group and keep us updated on how you are doing. Taxol will kick this to the curb and destroy it. In my prayers. Carol
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Rosevalley, I hope the taxol has you feeling better quickly. I have the impression it's not a hard treatment.
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Rosevalley,
I wish you all the best and hope the taxol does the job and that you start to feel better! Please take care.
Bonnie
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Has anyone noticed a change in their skin with new moles coming up and changes with pigmentation? Onc says she has not seen this.
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Rosevalley, I can only echo what others have said, I'm so sorry this treatment hasn't worked for you. I am praying for you and all of us trying to beat this devil. God's blessings to you
Faith
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((((Rosevalley)))
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Rosevalley, I'm so sorry Ibrance is not working for you. Major disappointment I know. Do you know what the next move is for you yet? We'll be thinking of you every day. You too steelrose, I hope the MRI comes out OK. When I was on Ibrance the first time I did seem to have more phlem in my throat and sticky nasal passages. I hope during your break you will be able to eat again...
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A couple of weeks ago I underwent my first set of scans since being on the Ibrance/Letrozole protocol (started in early January so I was in cycle 5 when I was scanned). I saw the results before meeting with my MO and was dismayed by the radiologist's report of a spot on my liver being suspicious of metastasis. I posted about this at the time complaining that we are at the mercy of how different radiologists read and interpret what they see on the slides. I didn't get a chance to report back after meeting with my MO so I'm doing that now. As I mentioned in my earlier post, my bones are stable! Yay! And with relief (albeit not complete relief) my MO does not believe the spot on my liver is a metastasis. It is too tiny to biopsy so I can't get that peace of mind. But my MO sat down with the radiologist and looked at the scan previous to this one (where there was no mention of this spot) and found that it was there in the previous scan but was so tiny and can only be seen in a particular slice of the scan that it wasn't noted. I reiterate my concerns that we are at the mercy of the radiologists. They can look at exactly the same thing and one reports nothing and the other reports suspicion of metastasis. It is so unsettling. I trust my MO and she tells me that what she sees on my liver looks nothing like any mets she has ever seen in the liver. Since we can't biopsy it I will accept her assessment. All of my blood work is stellar. Nothing to indicate any problems with my liver or bones. I'm slightly anemic and my WBC is on the low side of the normal range (when taken in my off week). As we know, Ibrance has that effect on the WBC and RBC and I am fortunate that my counts are pretty good under the circumstances.
So I am happy to report (now in the 3rd week of my 6th cycle) that I am stable and have not been experiencing any severe side effects from the Ibrance/Letrozole combo.
For those of you who are new to the thread and wondering what to expect in terms of side effects I can share my experience has been that this protocol has been very tolerable. Side effects seem to come and go. I had two months (cycle 3 and 4 I believe) where my eyes were watering profusely everyday but that side effect went away. In cycle 2 I had a minor rash on my arm that went away. Cycle 5 and 6 brought on a small patchy rash on my face but looks to be disappearing now. I get occasional hot flashes but they don't last long. My stomach burns occasionally but a little food helps that. I experience some joint and bone pain (I think that's from the Letrozole) but it's not all the time and can be managed with advil. My sense of taste has changed a bit. I feel sluggish in the morning and it's hard to get up but once I do I'm ok. I'm not running any marathons but wouldn't say I'm fatigued. So far I have NOT had mouth sores or hair thinning or neuropathy but that doesn't mean I won't. One thing you'll see from these discussion boards is that everyone responds so differently to treatment. Some treatments are easy for some and unbearable for others. There is simply no way of knowing how you will respond. But with so many strong, intelligent and generous women on this thread you are sure to learn a ton. It definitely helps to have a place to go where there are others in your situation who can help you navigate this unchartered territory. I am very grateful to the women on this forum for being so open and honest about their experiences. You won't find a more compassionate and supportive group of women anywhere.
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Adios Amigos, as I will be moving on from Ibrance/Letrozole. My cancer antigen numbers have been on the rise big time since April. My oncol. reduced Ibrance to 75 mg and added Letrozole rather than Faslodex(as Faslodex was failing) a few months ago and this, clearly, is not working. I will be taking more cat scans at the end of June, will be moving on to Megace and will look for a thread here in Stage 4 section. Thanks everyone for all of your help.
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Best wishes, nature girl. I've also moved on, had my first Faslodex shots yesterday! On to drugs that meet our needs!!
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Thanks Kaption, good luck to you as well. It's strange that my oncol. has now put me on a HORMONAL(progesterone) medicine called Megace. He said sometimes, and didn't know why, this med helps in containing the cancer but scientist do not know the whys. I think Longtermsurvivor mentioned this a while back, taking hormones. Please comment. It's always scary to take a new med but, we have to do it. My oncol. went over a few side effects, weight gain being one. Any of y'all heard of using this hormone or others, to combat BC?
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AnimalCrackers (AKA Cathy),
I've been reading this thread in anticipation of being placed on Ibrance/Letrozole, and your excellent summary of your experience with side effects came at the perfect time; I'm on my 2nd day/1st week/1st cycle. How reassuring to know what to expect - from you (and others, of course) who have actually experienced side effects instead of just what I heard from my MO and read in the information that came with the bottle of meds! Thanks also for the information on radiologist vs. MO verses both together reading scans. Glad to read that all of your tests are looking good!
Naturegirl2 and Kaption,
Wishing the very best to both of you. Thanks for sharing your information on what meds are available out there in case the Ibrance/Letrozole doesn't work out. Please keep us posted on how you are doing!
Angela
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Naturegirl,
I have never had Megace mentioned to me. It does sound different from others that have been discussed.
I wondered why I was going on Faslodex only and MO explained it as a matter of what I have been on and what as failed me. Not that I was anxious to stay on Ibrance. It gave me one relatively good year-but I am still exhausted and tired of not having an immune system to fight my recurring UTIs and now mild sinus infection. Hoping for overall better stamina and not being so darn pale! Lol!
Anyway, I trust my MO to know the chemistry behind my ER/PR & HER2 numbers, my history and what to try next. My job is to eat well, move as much as possible and enjoy my friends and family.
Thanks to all the inspirational women on this board!!
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It is so crazy-making that we have no way of knowing whether it is Ibrance, letrozole, or both not working. I asked my onc if I would stay on Ibrance if I switch from letrozole to Faslodex, and she said, "We would probably stop the Ibrance. There is no data to support continuing it." So if my upcoming scan shows it's time to move on, I think I will be following Kaption to the Faslodex thread. One of my grandmother's many sayings was "Be careful what you wish for. You might get it." How crazy is this world where part of me would be glad to have to go off Ibrance. (TMs have been slowly rising and last scan was suspicious.)
Here is some info I want to pass on to Ibrance sisters. I talked with a well-credentialed nutrition specialist who works with oncologists. She said to avoid the following foods as they compete with liver enzyme CYP 3A4, which Ibrance also needs for metabolism: Grapefruit, pomegranate, noni, bitter orange (Seville orange), and star fruit. This is interesting to me, because I had only heard about grapefruit. Bummed about the pomegranate especially, but glad to know. Hey, that's one more crazy thing to be glad of if I have to switch.
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ShetlandPony,
Thanks for the list of foods to avoid (I love pomegranates too), and for answering a question I've been meaning to ask about why we need to avoid grapefruit juice. I was on Afinitor for the last year until it failed and my MO switched me to Ibrance/Letrozole. Every month I saw the warning about grapefruit juice, but never thought to look into its negative impact. In light of the fact that both medications are extending lives, I shouldn't complain about avoiding grapefruit juice, (but I will). I've been a fan of Fresca since the 1960's, and I stopped drinking it since grapefruit juice is the third ingredient listed. Definitely not worth the chance...
My MO also gave me a lecture about avoiding mosquito bites until the Zika problem is resolved. We're on the Gulf Coast and there is already one confirmed case of Zika in a neighboring county. He also said to stay out of the gulf (several recent cases of that dreadful bacteria) and not to eat sushi or raw oysters. None of these is a problem for me, but wondered if others have had similar warnings.
Thanks again to you, as to everyone who has helped make this transition to Ibrance easier.
Angela
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Regarding foods to avoid.... I was told grapefruit (like all of you), but also green tea (YES! despite its many health benefits), flax seeds and flax oil. Apparently green tea is great for cancer prevention HOWEVER once you have cancer and are on treatment it can compete with the chemo and affect its effectiveness. I don't know exactly how flax interacts, but I was told to avoid it as well.
I am on ibrance + letrozole
Anyone out there on ibrance for LONGER than one year so far? Seems so many posting are on it for a relatively short time .
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Eelder-Flax stimulates the production of hormones. That's why I was told to avoid them- I'm ER+ and PR+
Babs
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Shetland, some (including me) on the FB Ibrance thread have called Pfizer re. foods like the things you've listed and others which have been brought up there, and so far Pfizer is only saying grapefruit. Not saying your onc isn't onto something, and we all must do what we feel is best when trusting our oncs and our own instincts about what not to eat. Plus the science is constantly evolving -- especially re. something as new as Ibrance -- so by all means please give us her sources for these other exclusions if you have them.
eelder, I've been on Faslodex + Ibrance for almost a year. I also consume two very strong cups of matcha green tea a day, and I strongly believe it benefits me. Again, this is a personal decision for each of us. I suspect, like Vitamin C (which I also take in fairly high dose), your onc is concerned about a possible protecting of cancer cells along w/good cells, and I believe there is adequate research to back up not doing high dose antioxidant supplements or foods within hours of a chemo infusion for that reason. But this is the first time I've ever heard a warning for green tea, especially for those of us not on chemo.
As always, if you have info' to share such as from your onc, it would be really helpful if you could ask them for their sources, so that we can decide for ourselves re. its credibility. Sadly, too many oncs are not only not up on nutrition, but also have a personal bias against anything complementary. Not saying this is the case with the above, but I have personally cringed when overhearing my own local, highly experienced onc, for example, telling another patient's spouse that her very sick and obviously malourished husband didn't need the nutritional supplements some had been suggesting to him. So I know for a fact even the best oncs don't always offer the best advice when it comes to nutrition. JMO.
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