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Nov 20, 2022 03:52PM
Nov 20, 2022 04:29PM
Yep…so true. I am all over the boards when I think things are not going so well, or I have concerns. When things are going good I am out living my life and I have to “remind" myself how important the posts from other Triple Negatives that reassured me were in my scary times. Then I come back to visit…
I was 46 years old when I was diagnosed. I had a 5 year old daughter and a 7 year old son. I had just finished doing at home palliative care on my 77 year old dad who passed 10 months prior due to lung cancer (with an unknown primary - is what the pathology report said. I am thinking he'd probably had breast cancer but they never found it??). Ladies…I seriously thought it was game over for me. But it was not.
Nume - where to start. After you are all done your treatment, I do have some suggestions, that may or may not have helped me.
1) I was not big into supplements but I had my Vitamin D tested. It was low. I did 2000 IU, then 3000, finally settled on 4000IU before my levels went up significantly. I always got them tested through a naturapath to keep track of them. But I will be honest I struggle to remember to take Vitamin D every day now (sometimes only take it 2 times a week ☹️)
2) Green tea - drank TONS of it. Basically only drank green tea and water. I still do but I am finding I am a bit dehydrated of late so i am drinking one electrolyte drink (Hydrant) a day as required.
3) I got the Anti Cancer book by David Servin-Schreiber and he recommended eating every day on your salad; 1/4 tsp tumeric, pinch of freshly ground pepper, dissolved in 1/2 TBSP of olive oil, then add 1 tbsp of salad dressing. Then put it on your salad or in a smoothie, I always did salad.
So what happened… for 1 year I had neutrophil and WBC counts just like I was on Chemo. My doctor was not concerned but then I had all these prophy surgeries that I had to do so then I had to com off everything. I still remember my breast surgeon coming into my room on the day of my procedure saying" Guess who's neutrophils and WBC's are normal". Okay then! So for the last 8 years I kept my neutrophils and WBC low on purpose. I told my doctor years ago that I thought I was giving myself a “natural type of chemo" by keeping my neutrophils and WBC down. She said “Why would you do this to yourself?" I had no answer at the time. But now I do! I found information on NET (Neutrophilic Extracellular Net's) which have been implicated in metastasis development. I found out about N/L or neutrophil to Lymphocyte ratio's and how lower the better. All of these things my doctor had no clue about.
3) I always took melatonin after my treatment was completed, but only 5 mg. After a few years I read that one of the ladies on this site was taking 10, so I upped it. Not quite like me to do that without researching the heck out of it but “Why not??" Now there is information about reduced rates of recurrence in TNBC with the use of Melatonin and I believe I did find one study that used 10 mg, so I guess I am good.
4) Seabuckthorn juice/ berries - probably since 2 or three months after treatment I started drinking seabuckthorn juice (Himalayan -different brands). I only did it because a friend suggested it. She said it was anti inflammatory. But now I look up and it there does seem to be some evidence in Petrie dishes😄. Not quite the best evidence ….but hard to get people to study this stuff as it is a natural product not a drug they are going to make a lot of cash on. Sooo….seabuckthorn has a lot of quercetin in it apparently (also good for TNBC).
5) I exercised a lot. I did 3 -5 hours full out on an elliptical machine every week. I literally was running from my cancer. In retrospect I probably did not have to go at it that hard.
6) But first if you have not yet, definitely get tested for a gene mutation. You all sound young …that is a red flag,
Unfortunately the kicker for you Dnazyme is the anemia. I have to think on that one. Because just about everything listed above chelates metals (iron/copper). Have you always been anemic or is it new? Pm me if you want to talk. I am glad to read that you are trying to up it with food and not supplements (Really bad idea!! - unless you are all done your treatment, then I am not sure if it is okay? But during treatment definitely no)
I just found out that quercetin chelates iron because I was giving it to my daughter for her allergies and her ferritin is at 19 (from 59 four years ago). She has Dysautonomia or POTs and I believe Mast Cell Activation Syndrome (MCAS). I believe I had Pots when I was young, from 14 years till 20's (dizzy when standing, racing heart rate - Tachycardia,headaches, vomiting - good time, good times…). I bring this up because many people with POts have anemia. It is a chicken and egg situation…they don't know if the anemia causes the POTs or the POTs causes the anemia because symptoms overlap. Anyways I have been thinking about this since I learned about your troubles with anemia Dnazyme.
6/13/2011, IDC, 2cm, Stage IIIA, Grade 3, 4/11 nodes, ER-/PR-, HER2-
6/29/2011 Lumpectomy; Lumpectomy (Right)
9/14/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
2/20/2012 Breast, Lymph nodes
3/13/2013 Prophylactic mastectomy; Prophylactic mastectomy (Left); Prophylactic mastectomy (Right)