Hi There... this is my first post but I have learned a lot from the Patient perspective by reading your posts. I learn things that I’m never going to learn from an Oncologist.
I have survived 5 1/2 years from MBC and although on constant drugs I only once agreed to chemotherapy. After 11 weeks I told my wonderful Onc. “No mo chemo” because I could feel my life force ebbing away. Miraculously that was at the same time the chemo stopped the progression!!!!! Brave little thing, aren’t I?
Off and on and now I have experienced debilitating fatigue. Rest , energy drinks, acupuncture, exercise, supplements( the few I’ve tried) and essential oils do not help. Maybe Healing Touch does.
Of course I’ve discussed this more than once with my Onc. And he says he’s recommended many things that only in some cases work.
Has anything worked for you?
Salle
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salletaft
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Hello, Salle! You don't mention what your protocol is now and whether the extreme fatigue is new? I'm "new" to MBC at just three months but wonder if you might discuss the possibility of adding a shot of Vitamin B12 occasionally? Or just add extra supplements of B12 to your vitamin regimen? God bless you on this journey!
Thank you...I like the suggestion of a B12 shot. I realized in the middle of the night I forgot to mention my current protocol. Ibrance 100 mg, Fadlodex and Xgeva injections monthly. I started Ibrance in October and I believe that is causing the debilitating fatigue. Thanks again for the suggestion.
I’m on Ibrance with Letrozole and Zometa infusions for my bones. I have lots of bone mets.
When I went from the anti-Estrogen pills like Arimidex, etc. to the oral chemo pills beginning with Xeloda, that’s when the fatigue set in. I, too, really believed that I needed a B-12 Shot to get me out of the fatigue cycle.
During my next visit with my Oncologist, he was looking at my bloodwork results and said. “You’re anemic. You need either a blood transfusion or Procrit shots to bring your hemoglobin, hematocrit, red/white counts up. The chemo pills are causing this anemia.”
I see my Oncologist every month and 2 days before each appointment, I go in and have blood drawn to check my tumor markers and other blood counts.
I was wondering why I was feeling so tired, but just thought it was because I had Stage 4 BC. I was putting up with the tiredness as best as I could. My counts were going down, but they have to be a certain number before insurance will pay for shots or if you need them at all.
I guess my bloodwork was slowly going down each month that I was on the Xeloda but not enough to warrant intervention at that point. Finally they went down to a point where I needed the shots,
Well, after several weeks on the Procrit shots, my counts went up and I felt much better. I continued with the Xeloda for 2 years, then was switched to Afinitor, but it didn’t help me as much as the Xeloda.
So now I’m on Ibrance, 75 mgs, with the Letrozole. I’m on the lowest dose, and now, after finishing my 3rd cycle of it, I’m anemic again! I’ve been approved for Procrit shots.. I get the 1st one tomorrow and can’t wait!
The Ibrance has brought my tumor markers down substantially, so if possible, I’ll be staying on it for as long as it continues to work.
So, salletaft, maybe you need to have your Ibrance dosage reduced? Is your blood checked each month before your Xgeva Shot, etc.? I’d discuss the fatigue issue with your Oncologist and see what he/she has to recommend to help you out. Ask what your blood counts are and get a copy of it. My print-outs show ALL my blood work below normal.
I find that I feel the most tired during the 3rd week of taking the Ibrance. Then I’m off of it for 7 days, which is right now. Yay!
I take a good whole-Food multivitamin, plus a B-complex Vitamin every day. I feel that this picks me up energy-wise and that I really need it to function while taking this medicine. I still get tired though, some days worse than others where I can barely do anything around the house. We’re on daily chemo after all.
We’re you ever on Xeloda or Afinitor? I tolerated Xeloda the best with minimum side effects. Let’s see what happens with the Ibrance routine.
I can relate completely with you and wish you success with your treatment plan. God bless!
Thanks so much for this information. My Onc said last week I am not anemic but I wrote down the blood markers you noted ( yes, I get monthly blood tests which I watch closely) so I can watch these levels in the future. I will ask for Procrit shots if those blood markers get low. It’s wonderful to hear you get so much relief from the injections.
I’ve never been on Xeloda or Afinitor and am not sure if these are future options or not.
My Onc showed me a long list of options to treat cancer-related fatigue but said because it is multi-factorial in cause no one approach is 100% effective.
Thank you for taking the time to respond. I wish you well on your journey.
In Ibrance and letrozole. Some days am exhausted but not sure it’s all due to the drugs, job or being overweight. Probably all 3. When I consistently drink green juices I feel a whole lot better.
Hmmmm....I was juicing and drinking green smoothies a couple years ago. I’ve gotten away from it and now they just don’t taste good. I guess I need to search for more smoothie recipes to try to find one that’s appealing.
I like greens and have a high tolerance for the often intense green flavor. Swiss chard has a milder tast than chard. Check out the Kris Carr website. She has some great recipes online. Also a book of recipes for juices and smoothies. You can also buy green powder and add to sweeter smoothies. One I use is Garden of Life perfect food
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Anyone go on Verzenio after Ibrance stopped working?
