Dear Renee
Thank you for your outstanding and compassionate work to help all of us.
I'm dealing with breast cancer with possible spread to lungs - no one explained to me after months of tests and coughing blood and difficult breathing and chest pressure and pain and back pain that despite scans being somewhat ok without metastatic indication that I could indeed have something called lymphagenic metastases in the lungs (it took a German doctor to figure this out after over 20 doctors here in the US are baffled). This is a grim prognosis. I have ground glass opacities, largest 7mm, no consolidation. Bronchoscopy yielded no information. Nothing shows on PET scan. Yet apparently I can still have this going on and I am going downhill and terrified, and trying to remain calm.
Many questions:
I don't know if i can talk about a doctor by name....anyhow, there is a US based doctor. He takes patients to Mexico City for this therapy I am supposed to do: cryoablation with intratumoral injection of immunotherapies. A Stanford study showed remission (complete) in mice using OXC40 and CPG. My injections would be OX40, Resiquimod and Yervoy. The tumor is 3cm large, hard, pulling in at the skin breast tumor. Been there for 2 years. No biopsy but clearly malignant according to everyone based on PET and what it looks like now - very bad. The doctor wants me on cyclophosphamide - 50 mg every other day for at least 3 months. This is supposed to deplete tregs and skew immune to th1 dominance. Problem: I cannot find outcomes on his patients. He is elusive with this data and claims records are gone mostly. The ones I have tracked down had to do several treatments at exhorbitant prices. I have found little success. The Ox40 protocol has only been available since Feb. He says CPG not available but I found it for sale from biotech - maybe it is a different form - I don't know, I'm not a scientist. This doctor appears to be a genius, but I am afraid it will not work or make me worse, because the few people I tracked down online had not had success or had to go back again and again and I cannot afford this. I found only one metastatic breast patient - had one treatment - she is cancer free now three years later. But this can happen even conventional treatment....One woman - had just cryo - lived 11 years. Yet I have a woman who did cryo with a Michigan doctor who is 16 years out and she had breast already moved into lymph nodes. She did only cryo and radiation. I've learned cryo can sometimes push immune ) csystem to eradicate mets, but sometimes (often???) can actually be neutral or promote mets. I am very ill (I have late stage lyme and severe CFS and adrenal insufficiency and more problems), and afraid I will be a treatment failure. Do you have any advice on this treatment and if it sounds likely to work? Can I speak with you privately - or anyone on here that has thoughts on this? I'm a bit frazzled with fear so not doing things properly probably with regard to forum rules, so please instruct me if I am making errors and I will fix them. Can I talk about doctors by names?
I have looked into German clinics - using hyperthermia with low dose chemo and other alternative things. They seem to have more documented results. I have one lump of money to use and cannot make the wrong choice. I also think I must act very fast. I am totally alone and this is overwhelming to do alone. I am not sure I can do it.
I went to Mexico for treatment from doctor above last week and my procedure was cancelled last minute and I'm supposed to go back in two weeks to try again (too long to recount all the details). But as I track down more "lack of success" stories I'm getting more and more confused and scared. Also this doctor does not answer my questions to my satisfaction, but I do ask a lot of questions - yet, it is my life. The German clinics doctors have been MUCH more responsive and kind.
I took one dose of cyclo and had rectal bleeding. Also breathing got worse. I read in rare cases it can cause irreversible pulmonary fibrosis, sometimes YEARS after treatment. It is not known to be dose dependent, although clearly one would think higher dose would be worse. I took one 50mg pill and had rectal bleeding. I don't know what to think about this. I am more afraid of the lung problem as I am in total hell with the chest issues and breathing problems - it is terrifying and the worse thing that has happened to me. Again, we don't know for sure, but more doctors are now considering this lymphagenic lung mets as possible for me, maybe probable. And there are not more tests to do other than try a transbronchial biopsy which I don't really want to do as the pulmonologist tells me now that they don't even know where to biopsy and it could come up negative and still be actually that I have this. So why go through it if it may yield no results. And also, would only scare me more as it does not alter what I'm planning as I'm moving ahead with the assumption that I do have lung involvement anyway. Bizarely, the coughing stopped almost entirely, yet the breathing is worse. I don't know what to make of this situation.
I also have now resorted to low doses of xanax, adderrall and percocet. I co-dose with microgram range of naltrexone (lower than ULDN) as studies show it can reduce tolerance and dependence and side-effects. I don't think this is good for cancer (I know it is is not). But I am going out of my mind otherwise and the stress it too much for me anymore. Any thoughts on this I would also appreciate. I was experimenting with LDN, seem to get worse....and now seeing it is maybe moving people to th2 dominance, so that would be the opposite of what you want for cancer - right? So how does LDN work for cancer...doesn't seem clear to me anymore.
I'm taking so many supplements, doing mistletoe injections, tons of medicines.....afraid to go back on cyclophosphamide due to lungs and the bleeding incident...don't know if I should go back to mexico for the treatment as described or go to german clinic.....or go to german clinic then go to regular cryoablation without the injections. A german clinic doctor was familiar with the Stanford mice "cancer vaccine" (the basis of my upcoming treatment) and he warned me against it, saying it is speculation and it is experimentation and could make things much worse.
Forgive me for this rambling - if you can offer any advice - could I also tell you what I'm taking and you tell me if anything should be stopped...I will put a list iright here:
Thank you for any advice you can offer...if I can talk to you or email direct, please let me know although I understand this is probably not something you can do!
God bless you.
- Rabia
Supplements
Turkey Tail Host Defense
Life Extension European Milk Thistle - 60 pills - $18.99
Solgar CoQ10 400mg
Country Life NAC - 60 pills - $15,99
Bluebonnet Betaine HCl plus Pepsin - 90 pills - $16.99
Life Extension NK Cell Activator - 30 pills - $30.99
I-P6 & Inositol - 120 pills -
Twinlab Betaine HcL - 100 pills - $11.89
Symbiotic Lactoferrin - $47.99
Quality of Life Kinko Gold AHCC - $49.99
Life Extension Super Bio Curcumin - $15.99
Life Extension Gamma E Mixed Tocoperols
Fruitrientx Sea Buckthorn - 60 pills - $14.99
Solgar Vitamin C with Rose Hips - (add Bioflavanoids) - 1500mg
Life Extension Digestive Enzymes - 60 pills - $14.99
Now brand EGCG (Green Tea Extract) - 400mg
Jarrow Brand NAC - 500mg - 100 pills - $11.99
Sutherlander OTC (Oleander capsules from South America)
Arteminisin
Vitamins
B vitamins
B1 - Thiamine
B3 - Niacin
B5 - Pantothenic Acid
B12 - methylcobalumin
(no b vitamins now)
Alpha Lipoic Acid
Serrapeptase, Nattokinase, Lumbrokinase
Vitamin C (L-Ascorbate)
Vitamin A
Cellect vitamin powder with cod-liver oil
sporadic high dose fish oils
Diet right now - anything goes, but mostly organic, mostly vegetarian
sporadic flaxseed and cottage cheese
Other
Viscum Mali (mistletoe sub-q injections)
Pectasol
Diatomaceous Earth
Concentrace Minerals
Probiotics
Quinton Marine (not now)
Macrolife Naturals - Macrogreens Superfood - 30 svgs
Frankincense (topical and internal)
Sandalwood (internal)
Tea Tree Oil (internal)
Mucuna Pruriens (replace dopamine)
Quinine Sulfate? Chloroquine? (not now)
Medicines:
Xanax, Percocet, Amphetamine Salts, Valium, Marinol, medical cannabis (all very low dose as needed) - co-dose with NAC and ULDN
Hydrocortisone (for adrenal insufficiency) - 10mg - am, 5mg, afternoon, 5mg, night
Metformin
Dr. Supplements (planned cryo with intratumoral immunotherapy treatment upcoming in two weeks)
Low Dose Aspirin
Cialis (not yet)
Januvia (not yet)
Cyclophosphamide (stopped for now - 50mg pill every other day - 3-6 mos)
Protonix
Cranberry
Sulforophane
Turmeric
Probiotics
Cashews
EGCG
Dear Rabia,
Thank you for reaching out to us. We're so sorry you're in the middle of such a difficult battle.
We understand how frightening it is to battle cancer and the extreme difficulty in making treatment decisions. That was the reason we wrote our book -- to help others battling cancer to navigate treatment decisions, to explain immunotherapy and practical ways to get it.
The best way we can help you first of all is through our book. We spent 2 years full-time to pour everything we learned about navigating treatment, especially immunotherapy, to aim for a cure. The entire book covers our thinking about cancer treatment strategy, using immunotherapy. It should answer your question about treatment strategy in great detail.
If you have unanswered questions after reading our book, please feel free to write in this thread and we will answer to the best that we can. Feel free to write the doctors' names. It may help other cancer patients and caregivers that are searching for information.
One note regarding your bleeding and the many supplements and medications you're taking -- some can thin the blood, which can make bleeding worse. We are not familiar with all the supplements and medications you're taking, but we know that these can thin the blood and should be avoided with drugs that thin the blood or procedures where there's risk of bleeding: fish oil, curcumin, nattokinase, serrapeptase, low dose asprin.
Early in my cancer battle I also took endless amounts of anti-cancer supplements. However, it was not sustainable and we had to focus our energy on treatments that could make a real difference in my survival, which we know you are trying to do too. We hope our book will be able to give you clarity for the decisions ahead.
We wish you much hope and peace,
Rene and Eddy