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by H is for Hawk
Tue Nov 29, 2016 10:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: A Potential MSS-CRC Immunotherapy From an AIDS Drug Start: The CCR5 Receptor Antagonist Maraviroc
Replies: 11
Views: 5047

Re: A Potential MSS-CRC Immunotherapy From an AIDS Drug Start: The CCR5 Receptor Antagonist Maraviroc

I tried to get my integrative doctor to prescribe off-label Maraviroc to me, but he stongly advised against it. Normally he has been supportive for off-label use of other drugs, such as metformin. He said the FDA requires the manufacturer to label the boxes with the ominous black box warning, in thi...
by H is for Hawk
Sun Oct 30, 2016 5:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone on Linzess for chronic idiopathic constipation (CIC)
Replies: 4
Views: 1519

Re: Anyone on Linzess for chronic idiopathic constipation (CIC)

Linzess worked for about two month, then stopped working even at the higher 290 mcg dosage. I didn't have any insurance coverage issues, but even with insurance the cost is relatively high, about $3 / pill. Others on this site have recommended seeing a GI department in a large city hospital that has...
by H is for Hawk
Wed Oct 26, 2016 4:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Enema experts
Replies: 10
Views: 2709

Re: Enema experts

The big red bag that can be purchased at most pharmacies works for most people. The non-chain family-run pharmacies that specialize in home care equipment like walkers have the best selection in this area. I have had chronic constipation due to opiate pain medication usage, so I have been using this...
by H is for Hawk
Mon Oct 24, 2016 9:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colonoscopy during treatment for metastatic disease
Replies: 9
Views: 1203

Re: Colonoscopy during treatment for metastatic disease

My oncologist said colonoscopies during treatment of metastatic disease was unnecessary. At he put it, you have more important issues now, treating the metastatic disease is the prime focus.
by H is for Hawk
Mon Oct 24, 2016 5:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Interesting case study on Vitamin D (and other supplements) in pancreatic cancer
Replies: 13
Views: 2455

Re: Interesting case study on Vitamin D (and other supplements) in pancreatic cancer

Conventional wisdom is that serum vitamin D levels (greater than) >100 ng/mL is detrimental to the immune system. Your story implies this is not always the case.
by H is for Hawk
Mon Oct 24, 2016 5:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Avemar
Replies: 1
Views: 742

Re: Avemar

I take the similar AVE ULTRA supplement, made by American BioSciences, that can be purchased on line. It is a fermented wheat germ extract that promotes immune system modulation. Their claim is that it promotes optimal NK cell targeting ability and coordinated response of macrophages, B cells and T ...
by H is for Hawk
Sun Oct 23, 2016 1:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Second opinion
Replies: 11
Views: 2044

Re: Second opinion

If logistics allow, getting a second opinion at a top national cancer center, such as Memorial Sloan Kettering, MD Anderson, Johns Hopkins, Mayo Clinic, Stanford, Dana Farber and others would be advisable.
by H is for Hawk
Sun Oct 23, 2016 1:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ending FOLFIRI, starting vinorelbine
Replies: 5
Views: 1554

Re: Ending FOLFIRI, starting vinorelbine

lpas, I agree with you, it would have easier to determine the therapeutic value if my vinorelbine chemotherapy and ozone therapy were done sequentially, but for most stage 4 patients, there is not enough time to allow this. You have do as many conventional and alternative treatments at the same time...
by H is for Hawk
Wed Oct 19, 2016 9:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ending FOLFIRI, starting vinorelbine
Replies: 5
Views: 1554

Ending FOLFIRI, starting vinorelbine

Unfortunately, I had disease progression in my liver with two new tumors following 5 cycles of FOLFIRI, so I am now trying something novel, off-label use of vinorelbine. I had my first infusion today of vinorelbine, an FDA approved drug to treat lung cancer. This was brought up with the article &quo...
by H is for Hawk
Mon Sep 19, 2016 4:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Experiences With Dr. David Kelsen At MSKCC?
Replies: 14
Views: 2678

Re: Any Experiences With Dr. David Kelsen At MSKCC?

I had an oncologist who would not win any personality awards, and was not the warm and fuzzy type. I kept seeing him anyway because I thought he had good diagnostic skills, was aware of the latest research, and made decisions based on data, not a hunch. Expecting to find a doctor with good bedside m...
by H is for Hawk
Wed Sep 14, 2016 6:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Calling all Vectibix patients
Replies: 6
Views: 1169

Re: Calling all Vectibix patients

A consult with a Memorial Sloan Kettering dermatologist really helped with the Vectibix side effects. He prescribed Ammonium Lactate Cream (12 per cent) for my excessive flaking skin due to Vectibex. It is a humectant, it attracts water from the air, which eliminated the dry, flaky skin in about two...
by H is for Hawk
Sun Sep 11, 2016 1:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pump vs Pills
Replies: 13
Views: 2103

Re: Pump vs Pills

Out of pocket costs could vary between the two. The pump is generally covered by your out patient hospitalizations plan. For pharmaceutical insurance plans, Unless you have a high end plan ( Union type), the copays for the pills could be a significant expense. Some patients with liver lesions specif...
by H is for Hawk
Wed Sep 07, 2016 12:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Bad CT Scan
Replies: 78
Views: 10015

Re: Bad CT Scan

Jim, My local oncologist also gets the chemo treatment instructions from MSK. There are no ego issues with the local oncologist, he actually prefers this arrangement for complicated cases, in my case with the BRAF mutation. The local oncologist deals with side effect issues, anti nausea meds or Neul...
by H is for Hawk
Mon Sep 05, 2016 5:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: on to FOLFIRI, with severe nausea at +4 +5 days
Replies: 8
Views: 2091

Re: on to FOLFIRI, with severe nausea at +4 +5 days

Jortego128, Thanks for the sincere complement; unfortunately I am having difficulty outsmarting my cancer. I have seen the best doctors in the country, tried numerous complementary therapies, but I just can't shake this colon cancer thing. I would be happy to be able to manage it as a chronic diseas...
by H is for Hawk
Mon Sep 05, 2016 12:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Results of my clinical trial - pls read, VERY important
Replies: 31
Views: 7278

Re: Results of my clinical trial - pls read, VERY important

Last week, I had my first five pass ozone (O3) treatment session. My veins were being stubborn, and the blood was flowing slowly through the tube, so only five passes could be done not the desired 10, in the allotted 2 1/2 hour office visit. The doctor would not use my port, which I think would have...

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