Hi - I had breast cancer in 2009 and have been NED since this past spring of 2017 when I started having neck, head, and back pain. I finally had an MRI that showed mets to hips, spine and sacrum. I first had radiation to my hips and spine, then have been on letrazole and Ibrance since May and June. I did notice that my c reactive protein was high when taking Ibrance and now normal when I'm not taking it. Has anyone else had this checked and happen? If so, how was it fixed?
I've also been taking blood builder supplement to help keep my RBCs and hemoglobin up high enough. I've been eating cacao nibs to help my WBCs, which seems to work for me. I've tried tahini, but it did not work. Anyone have other things that worked for keeping WBCs up? I've had to lower my dose to 75 mg of Ibrance.
I also take Zometa infusions once a month to help strengthen my bones.
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lweaver
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Hello LeAnn and welcome to the group! When I started on the Ibrance/Letrozole regiment back in April at 125 mg my WBC dropped too low and I had to change to 100 mg. I just started cutting sugar out of my diet which has been a work in progress and it usually takes me about 10 days off of Ibrance instead of 7 to get back to an acceptable level. I'm not sure about my c reactive protein. I will have to check that. I just take D3 and a daily multivitamin. I wish you the best in your journey. Take care, Geri
Thanks so much Geri! I had the same experience with 125 mg. I had to be off for 3.5 weeks after that first attempt. I have to take the 75 mg. Cacao is helping me keep my WBC up. I'll post when I get checked again to see if it works for a regular cycle.
Don't take the Astragalus if your estrogen+, I bought it to my oncologist and she looked it up and gave me a print out from Sloan Kettering saying that it contained estrogen and told me not to take it, glad i asked b4 i took it,but if your cancer isn't estrogen related im sure it would be fine, I would still ask your oncologist b4 taking any supplements other then vitamins
Hi! I've been on Ibrance since May 2017 and my protein level has increased. My onc isn't sure Why? Sounds like you think yours correlated with taking Ibrance ? How high was your protein?
I have just ordered Fucoidan with AHCC today. It seems can help boosting the immune system and also killing cancer cells. It is just supplements not medicine though. I will let you know how I find it after taking for while later on.
Thanks Sheung! I would love to know if that supplement works. I may also try Chaga tea - it is mushroom based and boosts immune system. I have heard of AHCC from someone who is a nutritional coach.
Hello LeAnn, I was diagnosed in Feb 17, ER/PR+ first treatment Adriamycin and Cytoxan every 3 weeks for 4 times. Then switch oncologist and treatment plans. I've been on Ibrance125/Letrozole and Zometa (every 3 months). Attained NED on Aug 17th on this date all my labs hit normal for the first time and I was feeling GREAT. I started slowing down about 2 weeks later my Sept appoint revealed TP high; RBC low; MCV high; Anion Gap high; B12 low. My doc is ordering additional tests for my Oct appointment and started me on B12 injections weekly for 4 weeks than monthly after that. I hoping the B12 helps. I had not heard about cacao nibs for and RBC boost. Any recommendations on brand, how about Sprouts Farmers Market Organic Cacao Nibs?
Hi Lisa-N-AZ! I have not heard of that brand - I am eating Navitas brand cacao nibs. It is helping my WBC. Since Sprouts Farmers is organic, it should be fine. I am also taking Mega Food brand Blood Builder - which has helped my RBCs and hemoglobin. Blood Builder contains: Vit C, folate, B12, and iron. It is supposed to be food sourced. I have been taking 2 per day. I will get checked tomorrow - then I'll decide if I need one or two caplets a day. I'm so happy for you to be NED. That is my goal - but I could not take 125 mg. If I can get my counts higher, perhaps I could try 100 mg of Ibrance. What is TP? Since you are NED, then you will not take Ibrance for now? Thanks for sharing your experience here! Since you will be getting B12 shots, you may not need blood builder.
Hello, I love getting feedback from my fellow team players. How much of the cacao do you eat a day? Even as NED I will continue 125Ibrance. My first blood work after being NED all blood work was normal. Then 30 days later not so much all over the board. My TP is 8.0 - this is the first time it has gone high.
Ibrance wreaks havoc on bloodwork. Im on 75 mg because of low cpunts. I grind about a tablespoon and put in my daily smoothie of frozen spinach, frozen wild blueberries, organic chocolate protein, and some water. I also add a teaspoon of black tahini and 8 grams of glycine. I use alot of tahini be ause sesame is good for bone health. Pumpkin seeds and sunflower seeds are good too. I have bone mets Im trying to clear.
Im not knowing what TP stands for. Ill try googling it.
Thanks. I think TP stands for Total Protein. When my daughter was an extreme athlete her TP was high (Protein in her urine) and we had to have her rest for a week prior to retesting for entrance medical for a Military Academy. Might not be related...just because of have MBC does not make me an expert in any medical arena. High TP/low B-12 are linked to autoimmune diseases...yeah more blood work.
I am on disability now because of bone mets pain. Im getting pretty functional at home now. 4 months ago I could not sit up or walk. If pain goes away, I should be able to go back to work.
I have been on Ibrance and Letrozole for 1 year. I work as a microbiologist in a manufacturing facility. I have to say I wonder sometimes if I struggle more than I had, but I am still able to focus enough to work and get the job done. My very best to you.
Hello LeAnn how are you? Are you still neds? Are you still taking ibrance? How often do you take scans? Sry so many questions, I'm ned and I still have a lot of questions about how to live.
I'm still hanging in here. My meds have changed since my markers increased this spring. I'm now taking Faslodex with Xgeva. My scans in March showed increase in activity in the bones, so that is not good. I'm looking at doing low dose chemo called IPT. I'm doing acupuncture and IV vitamin C, strength training. I wish I were NED, but maybe I'm a bit stable. We'll see when I get a bone scan next. Thanks for asking!
Remind me of your situation if you have time. Im glad you are NED and Im glad Im still enjoying life anyway.
I was dx last yr Nov 2017. I did ibrance a d radiation to bones. I was dx with bone mets only. I did radiation for a couple of months. Ibrance lower my wbc I stayed in hospital for 10 days. I was also taking falsodex and xgeve every month. In April 2018 I went in remission. That's what my doc say not neds. He tells me since I dnt have any health problems it worked towards me. I feel great no or lil pain. The monthly shots are healing my bones. I have read so many women stay they are working full time with bone mets only. I did get scar tissue from radiation. So many people state we with only bone mets do extremely well. I know I should embrace neds, my mind keeps wondering. I hate because your having a hard time but things will get better. There are so many other treatments out there, we are all living for a cure. Judy perkins is cured and we shall be next. God bless you!!
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