Diagnosed with MBC in ischium and sacrum in October of 2020. On Ibrance and Letrozole since November 2020 with good results, stable scans, good bloodwork. Tumor markers have fluctuated a few points each time but never been higher since 48 after starting treatment, original highest level at time of diagnosis was 64. Three months. ago, the number dropped to 39.8, yesterday I learned it was up to 50. Previous to 39.8, the marker was at 42.6. Going for a scan next week to check for progression, last scan 3 months ago was stable. Can't believe things would change in 3 months. Anyway, doctor is saying if progression she will take me off Ibrance and switch to different med but leave me on Letrozole. I have not had many side effects with Ibrance except for lots of hair thinning and am hesitant to switch to something that could cause lots of side effects. I have been blessed so far with the opportunity to play lots of golf and be very active and am not excited about that changing. If she suggests a change, was thinking of asking if I could switch to a different dosing protocol for Ibrance, like 5 days on, 2 days off just to change things up a bit and see how that works before moving on to something else. I know this is pre-worrying, but just wanted some advice about what others might do in this situation. I know the tumor marker could be affected by things other than cancer, but I have not been sick nor had any vaccines, etc. that might change the number. The only thing I have done differently is to start taking a B-12 vitamin, which should not affect anything. Thanks in advance. Sorry for the long post.
Question about second line treatments - SHARE Metastatic ...
Question about second line treatments
Oh my dear! Your post could hav been written by me. I am in the exact same place as you . On anastrozole and IBrance since August of 2020, Mets in the ilium, playing golf, and now my markers are creeping up even though my last scans in a November showed everything stable. Since last August of 2022, I have been on the 5days in 2 days off schedule because of debilitating neutropenia…it helped and I have been able to take more IBrance pills regularly since … more than if I had taken 3 weeks on and two weeks off!
Nevertheless, the drumbeat of rising tumor markers ( a fluctuation of ups and downs since last fall when I had the Covid vaccine booster and flu shot ) is scaring me. I will have two scans on Monday to find out what is going on….is this the dreaded 30+ month life span of IBrance usage?
Well, it’ll all become clearer next week …but in the meantime I have the same questions you do. Some time ago I had gone to a bigger hospital here in NH to get a second opinion, and Dr. Mary Chamberlain had said at the time that there would be many options after the initial IBrance treatment…including a method to trick the cancer into recognizing IBrance again. It may be time to reach out to her again,
Ugh, these past couple of years I’ve been enjoying relatively good health and have put MBC in the background. Now it’s all back in the forefront…and terrifyingly so. Hope you and I get better news next week…❤️🩹❤️🩹❤️🩹❤️🩹❤️🩹
Thank you so much for your response to my post. I was actually thinking about you when I mentioned the 5/2 protocol for Ibrance! My oncologist told me not to worry yet, and that if need be there are many other medicine options. I am just worried that these other options could cause side effects like diarrhea, neuropathy, etc. I love my golf games and neither of these side effects would work well on a golf course! When I was first diagnosed with MBC, I was worried how long I would survive. After 2 1/2 years of feeling well, I had hoped to get many more years from the Ibrance and to continue to do well. I am still hopeful that perhaps this rise is due to something other than cancer. All of my other bloodwork this time was excellent, including WBC, neutrophils, liver and kidney function. Also, I feel great. I will pray for both of us to get good news. Sending hugs.
thank you for your kind words….we are totally in sync here! Best of luck next week and going forward. One thing I started to take regularly was a couple of supplements: turmeric/curcumin fir inflammation and Berberine which prevents cancer cell proliferation by inducing apoptosis and controlling the cell cycle as well as autophagy. ( death of cells). Fingers crossed that this is affecting the tumor markers. Oh my dear…we need good news 🙏🙏🙏
You are welcome! I had asked my oncologist about taking a turmeric/curcumin supplement as I know it is great for inflammation, but she said I could not take it as it could interact with the Ibrance. I stopped taking the supplement but started adding turmeric powder to my smoothies in the morning. I also sometimes add ginger and cinnamon as I know they fight inflammation as well. I was feeling like these things helped. I am just hoping this tumor marker rise is just a blip in the testing method and means nothing else. Prayers for good news for both of us!
A year ago, I was exactly where you and Dragonfly are now. I got 2 years on Ibrance and fulvestrant, then another year on an oral SERD. I was NEAD for two of those three years. Most of all, I had little or no side effects and thought I was one of the lucky ones who could stay on Ibrance for 5-7 years. I was able to increase activity (not golf, but swimming and dancing) and pretend I didn't have a terminal disease.
What I have to say is not extremely encouraging. I have found the next treatment to take a toll. (Verzenio and anastrozole, after I stopped letrozole because it made my hips hurt.) The diarrhea is mostly under control now that I am on the lowest dose, and immodium works well if it isn't. Fatigue is a problem and I have muscle/ligament pain from anastrozole. I am less active than I used to be -- more like a normal person than an exercise fanatic. You are already on letrozole and able to golf, so continuing that shouldn't stop you. But maybe the worst thing is not the side effects per se; it is that having pain and disruptive fatigue reminds me that I have mbc and there is no escape.
Really interested in the opinion of the oncologist who suggested the method of tricking Ibrance into working again. It is just a vacation. I tried to talk my oncologist into that, but she refused to consider it. I posted separately that I would like to hear from people whose oncologist tried the Ibrance restart.
I'm still playing golf and I've been on IV chemo for over a year - swing away! I can still walk 9 - 18 is too much and my neuropathy never got too bad because I am taking L-Glutamine 2x a day - just in my toes and I am grateful
Thanks for that information. I'm glad you are doing well. Do you have a port?
Yes I have a port it only shows through low cut or tight shirts - neither of which I wear much
I'm glad you are able to play golf with a port. I did not think that was possible. Good to know. Sending hugs.
It does not bother me in the least. It hurts sometimes if I sleep on my right side with my right arm under my head - squishes it too much I guess. It really is no bigger than a tiny bottle cap and I was never told to limit any activity - I even went on the Casting for Recovery fly fishing retreat last year with no problems - and shh (don't tell my doc) I also went skiing once this winter.
Thank you for sharing this information. I was not sure if it would affect a golf swing or other activities, that is good to know. Sending hugs to you.
Hello! Did your onc suggest taking vitamin B12? Mine told me it’s to avoid (only if it’s levels are very low) because it increases cells activity, especially fast growing cancer cells activity. Your markers seem low in numbers, it could be anything. 🤗
The nurse practitioner suggested I take it because my platelet levels and hemoglobin levels were low. I asked the nurse if taking that could cause the tumor marker to rise and she said no, but it is the only thing that I have changed in the past three months. Thanks for sharing this information with me. It would be great if that is what caused the number to go up. I am hopeful it is nothing. Sending hugs.
Ay, really? I see an oncology nutritionist who forbids most supplements, including tumeric curcumin. My B12 was marginally low, and everyone said to take a supplement, and that it didn't matter if it got too high because you pee out excess B12. But it makes sense that it increases cell growth. Everything else I have looked at, supplements that would help with joint pain from anastrozole, also increase cell growth.
I had a second and a third opinion for my pathology and all oncs agreed that all vitamins B should be avoided. They all agreed that vitamin D is welcome when proved low in blood work and they were skeptical about vitamin ,C particularly during chemo treatments. Their vision is that every supplement feeds cancer too.
Thank you for this information. After reading your messages and looking up information on B12 and cancer, it sounds like taking it can affect blood test results and should not be taken before blood tests. I had been taking this for awhile after my last blood tests and I feel it is possible it affected my tumor marker, even though the nurse said it wouldn't. I am hoping the B12 is what caused the spike. My oncologist wouldn't let me take Turmeric supplements or mushroom supplements, collagen or biotin as she said they could cause issues but would allow the B12 and Vitamin D.
I actually heard an oncologist and researcher theorize the same during a presentation, that taking supplements feeds cancer too. Especially the mega doses. The video was a presentation from one of the cancer centers. Wish I could find it.
My doc said no multi-vitamins during treatment and I stopped the side effects decreased dramatically. I do take Vit D and Calcium but thats it
Some oncs don;t test for tumor markers because of the anxiety they can cause! Things besides cancer can make them rise and it's not always possible to figure out what. What is your body telling you? Pain? If you feel prettymuch as you have been, it's likely your scans will show stability. I'm a long timer with MBC and there have been times when my CA27-29 was as high as in the 500s. I was diagnosed with bone mets from the get go in 2004 and have had little pain. I did most of my normal activities u ntil about six months ago when I had a blockage in my small intestine due to abdominal cancer cells. I was in the hospital for just over 3 weeks and lost alot of muscle tone as i was in bed most of that time. My digestion has changed alot since then, I've lost over 50 pounds, and am more tired than I have been. Some of us do well for a long time and you are off to a very good start! Responding well to your first treatment is a great sign! I hope you'll still be golfing for years!
Thanks for your response. I feel great. I am very active, I play golf every day and also do workout routines several times a week. I eat fairly healthy, choosing more plant based meals, and maybe have a glass of wine once in awhile. I use essential oils to help me relax and for other purposes, but I do not ingest them ever. My scans have been stable since March of 2021. I think she was concerned as the marker dropped below 40 three months ago and now is at 50. Before that drop it was a 42. I am wondering if the Vitamin B12 affected the number as I have been taking that for more than a month and took some the morning of the blood test along with other multivitamins plus I had some turmeric in my smoothie as I do every day. I was hoping to get at least 5 years from the Ibrance. I know you have been at this a very long time and you are an inspiration to me. I value your input.
I appreciate all of the responses to my post. I feel a bit guilty sharing my worry and my reluctance to change meds if I ended up needing to. I have been so blessed to feel well for the past 2 1/2 years, and I know so many of you on this site have had to deal and suffer with many unpleasant side effects from meds as well as pain and limited activity due to the MBC affecting everything from digestion to fractures to muscle weakness, etc. I know we are all on different journeys with our MBC and I wish that the meds we need to take would just get rid of the cancer and not cause so many issues that affect our quality of life. I read a lot about changing to a plant based diet, taking various supplements, using infrared saunas, red light therapy, meditation, yoga and various forms of energy healing to fight cancer in a more natural way without side effects. I wish there would be clinical trials on these things to help all of us. In the meantime, sending all of you on this site hugs and prayers on your journey.
Hi there! I too am almost in your boat except I have not had as much time on the Ibrance/Letrozole combo. I have had 15 good months. Side effects have been very, very minimal and like you and I have lived without thinking I have MBC (well, on a daily basis), exercising, living life, etc. I have been more than blessed. However, I started having some pain in my breast where the cancer was discovered and I was due for my 3 month scans within weeks, so we moved them up. I have mets to lungs and the scan showed a couple of nodules had increased by 3-5 mm. My ca15-3 numbers had increased twice in 3 months as well. When diagnosed I was at 234, once on Ibrance they dropped to the 40's. I was never in the normal range - but now they have increased into the 80's. We are going to wait another two months, do another scan and go from there. But I am so scared of moving on. I know there are other options, but just like you and Dragonfly2 I worry about new side effects. And like you, I realize others have not been as lucky and I do keep each and everyone on this site in my prayers. Please keep us posted with updates on your journey. Blessings!
Thank you so much for your post. I'm glad you had some good months on Ibrance/letrozole but I'm so sorry you found out you have some progression in your lungs. That is difficult to hear. I think it is good they are going to do a follow up scan before switching your meds. It is scary to think about moving on to another med, which might have side effects that you are not experiencing now. I know there are many options, but they all seem more difficult to tolerate than Ibrance. When reading about other people's sometimes unpleasant experiences with the second line treatments, I think about how these drugs would affect me if I needed to take them, and how I would handle that. I actually got my scan results and it was negative, so I don't have to think about it yet. It was a relief, but I know that this luck might not last forever. I still don't know what would have made the tumor marker go up. I go back in a few weeks for bloodwork so am crossing my fingers it goes back down and was just an anomaly. I keep all of the women and men on this site in my prayers and hope that everyone can have some quality time on their meds without suffering side effects. Sending you some hugs and prayers.
Wonderful news on your results! I am VERY happy you don't have to think about moving on right now. Tumor markers aren't the most reliable so many things can make them vary. All the reading I have done tells me that. My onc still says he doesn't put much thought into them. He believes in scans and how his patients feel and are doing. But I know everyone is different and no one is necessarily right when it comes to them. It seems doctors have different opinions when it comes to them. Your words about "everyone on their meds" is a prayer/wish we all hope for. Thank you for that.
Thank you so much. I had so many prayers being said for me and I know they helped. I know the markers can fluctuate due to things other than cancer, but the fact it went up close to 11 points in three months made my doctor concerned. I told her I was feeling fine and had lots of energy, etc.. I'm glad she had me go for the scan, I would have had to have one in July anyway. Now I can relax for a bit. Take care of yourself and stay positive. Sending hugs.
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