Tag Archive | NIH

A Visit to the NIH

Briefly, What’s the latest — How am I doing?

It’s been a tough couple weeks but I’m pretty much doing the same as usual. That is, I feel well-enough. We consulted with the National Institutes of Health (NIH) in Bethesda, Maryland. It was a worthwhile trip although they did not have anything very inspiring to share. We continue the good fight however.


Details

Treatment

Three days ago, Tina and I travelled to the NIH to see if they have any good ideas, hopeful treatments or interesting clinical trials to suggest for me. They did not reveal anything that just made us jump for joy. They did however criticize my current treatment plan* as suggested by Duke. We also now have a better understanding of how I am likely to experience death and recognize the need for palliative care. I didn’t expect they would have the Silver Bullet sitting there ready to save me but I was disappointed it wasn’t a more encouraging visit. At least we can say we tried. I will likely participate in a simple data gathering effort they extend. They will pay for some future travel expenses.

*NIH critique of my current treatment
If Avastin is likely to blame for my ruptured appendix, GI bleeding and tumor bleeding, then why would Duke suggest I continue? If low-dose oral chemo (Temodar) failed me in the past, why am I bothering to try again? (The answer is that we are using it in conjunction with Vorinostat as an adjuvant therapy in hopes that it will all contribute in some way.)

We did ask them about DCA, Metformin, Quarcitin, DCVax, cannabinoids and Novocure. They don’t have trials for these options now so no useful information really.
A quick note on Novocure though. I did try NovoTTF. When the tumor grew, doctors said it would be foolish to continue. I just read study results that claim continuing is exactly what we should have done. There is a 6 year survivor (from early trials) that continued treatment through progression. Who knows — I can always give it another go if I want.

Clinical

A doctor at the NIH confirmed that space is getting tight in my skull. The more the tumor grows and my brain swells, the more likely I am to become symptomatic (seizures or other neurological symptoms such as affected vision, memory, speech, mobility and so on). In fact Tina and I have noticed a little bit of speech and vision degradation.

We ordered some special blood work to reveal details that medical doctors don’t bother to take into account when treating me. These results show that:

  • my body is deficient in some nutrients
  • I’m not detoxing very effectively
  • I should cut or reduce gluten-intake

Psychological

So I suppose it won’t be too surprising to disclose now that I have had some of the darkest days of my journey thus far. I was quite depressed for a couple days. I honestly have not experienced depression since my ordeal began 17 months ago because I have had good overall health. Other contributing factors to my down mood could be the cold, wet, dark weather or the benzo drugs I was given to counteract mood changes from the steroids I’m on for brain swelling. Western Medicine just does not have solutions for me. So I will continue to follow the paths we have previously chosen — optimal nutrition, naturopathic, holistic, spiritual growth, energy-healing, physical health, strong, and bonds with family and friends.

But as I write this post at 6 a.m., on one of the coldest nights we’ve had all winter, I see my weeping cherry tree in the garden beginning to blossom and I am happy and hopeful still. So don’t worry about me.

I think it might be time to work in a vacation soon.

An NIH Option — Obliteration and Immunotherapy

The NIH will test existing samples of my tumor. If I am in the 25% of people with a specific gene marker, then I would qualify for an immunology study they are conducting. I would have to sit through apheresis as I did for the ICT-107 trial. They extract my white blood cells, whizz them together with experimental drugs and what-not to jack up my immune system to hopefully attack the cancer. Then I would have to take up residence in hospital at the NIH where they would proceed to completely obliterate my immune system with chemo and then rebuild it with my modified T1 cells. Risks are high and include infection and sepsis. This is not an appealing option. But this type of tactic has had success with other serious diseases.

Personally

The daily outpouring of love and support  from so many people brings us much joy. Thank you!

My thoughts on the meaning of life, what is real and what matters seem to be in conflict with what our society and ideals have developed into. As my condition improves I can visualize myself becoming more outspoken and active in improving areas I perceive as failures in society. I have nieces and nephews that I think should be able to expect more fulfillment out of life.