My husband and I picked up our copy of Curing Cancer in out central Florida Barnes and Noble bookstore. I had just been diagnosed for the second time in five years and we were both looking for a different approach/answer after spending five weeks with radiation on my right shoulder/scapula for the second diagnosis, only to be told we are sending you home to be kept comfortable after drs found another hot spot on the right hip area. Drs concluded after the hip MRI that " comfortable" would be the best way to go.
Rejecting that, we packed out bags and headed to Tijuana one week after radiation completion. We had the dendritic cells done there with Issels and have Coleys in our refrigerator at home. I took one Coleys injection when I started to pull muscles in my back leading to great pain. The pain was so great I went to emergency room twice. We found out tumors were now present on spine and that I had fractured four vertebrae.
I do not know how tumors could be present on spine after spending a week in Mexico and three at Issels clinic. I was taking supplements and getting IVs for three weeks straight.
Drs injected cement into two of the vertebrates and I can now walk, sometimes with the help of a walker. I am once again back in radiation to shrink the tumors, but it has been frustrating as my esphogus and appetite have been effected causing major weight loss.
My husband has switched me off of the ketogenic diet( were on this for three months) to Gerson thearpy ( although radiation makes this diet difficult) every dr. We have met days a different diet..... ketogenic, low methiane, gerson. (Drs in hospital boost, ensure, ice cream)
What kind of diet is best with angio sarcoma and what should be our next step. I'm having trouble getting to the healthy enough point with weight loss to use Coleys. I'm also doing a once a day coffee enema. I complete three more weeks of radiation on my spine this Friday. I'm on two experimental drugs, cassodex and votrient as well.
Since your research was constant during your journey, please advise. Thank you for your time Renee and Eddie!!!!!!
Love,
Daphne Miller
Hi Daphne,
We're so sorry you're having such a trying time with the tumors in the bone.
If you've read our book, we'd like to refer you to specific chapters that may help with your situation:
Cryoablation (Chapter 11) - it can kill tumors in bone and it's used to decrease pain caused by bone tumors (by dulling the nerves in the area), but it also has an immune effect by releasing tumor antigens.
Can contact these cryoablation doctors: Dr. Littrup (http://www.cureasps.org/forum/viewtopic.php?f=55&t=1296) or Dr. Aoun (http://www.cureasps.org/forum/viewtopic.php?f=55&t=835)
Checkpoint blockade (Chapter 7) - this can be done via clinical trial or off-label (Chapter 16), right after cryoablation or radiation of your tumors. Here is some clinical trial info I recently got from MD Anderson (Houston) for Sarcomas (read reply #6 "Sarcoma immunotherapy clinical trials") http://curingcancerbook.com/where-can-we-get-slides-tested-ny-eso1-expre...
Issels - When we went to Issels, our sole purpose was to start IV Coleys, specifically Coley's Toxins that was manufactured by MBVax, a Canadian company (pg 79). We know that MBVax stopped production of Coley's Toxins quite a few years ago, so we do not know where Issels gets it's Coley's Toxins from. We did not do any of the other immunotherapies at Issels, as we did feel confident with their operations.
Coley's Toxins - My mixed experience with IV Coley's Toxins is recounted in Chapter 10. One potential reason IV Coley's may not work to shrink tumors is that not all the pieces are in place for the immune response (Chapter 16, Table 3, pg 272)
Thus we would recommend doing cryoablation to your bone tumors, followed by checkpoint blockade (PD1). If I had tumors recurring now, I would do this instead of Coley's - because it's a more powerful way of harnessing the immune system.
Diet - Since you're on Votrient, there is the potential side effect of bleeding. So, we would not recommend going on the high dose omega 3, or even the ketogenic diet, as both these diets thin the blood (in my experience, the ketogenic diet has a stronger effect on thinning blood, even when I just did it for a few weeks). But, you can be mindful of the omega 6 in your diet, lowering it as much as possible. Since it's hard for you to eat, I would recommend eating high calorie foods with low omega 6. Be cautious of high omega 6 in vegetable oils, nuts and seeds, if you're on the Gerson or vegetarian diet.
Chapter 15 goes into the details of the diet I am on. This link has information on some common foods, and resources where you can look up omega 6 amounts in foods: http://curingcancerbook.com/nutrition-facts-low-omega-6-diet-and-ketogen...
I am not familiar with Cassodex so can't comment on that.
Wishing you much strength and courage in your battle!