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.
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.
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
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.
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.
Ken, keep fighting. I am pulling for you.
Kebo, Sending prayers for you and Tina.
Hi Ken – You’re on our thoughts a lot and we always make sure to send love your way every time we think of you so all the negative forces out there know you’re very much a valued and meaningful part of our lives. I like to think energy works two ways – a kind of gravity of love – ours to anchor you and yours to anchor us. The more love we can weave around you, the stronger your bond of life to all of us. I just wanted you to know that so that perhaps in your darker hours, you know that, even if we are not right there, many of us are constant in spinning this web of love around you and Tina spiritually.
Thanks for the update! I’m glad to again hear that things are staying relatively stable for you. Improvement is the goal, but please keep in mind that with GBMs, even a period of stability is an incredible blessing that many don’t get to experience! Keep your options open for treatment- try whatever they’re willing to throw at you as long as it wont make you TOTALLY miserable- you’ve had such an exceptional journey so far so it’s clear that you’re strong and likely a good candidate for treatments!
I think it’s good that you talked to your doctor about death scenarios (not to get too dark on you here- I’m hoping you kick the crap out of this cancer!) I hope you were a little reassured by what he had to say. From my experience losing my mom to a GBM tumor, it wasn’t as bad as we were expecting, to be honest. I’m sure its different for everyone, but for us, it was a rapid decline, not a long/lingering one. We never had a time period where she didn’t recognize us or was too confused about where she was or what was going on. She communicated with us clearly until about 6 hours before death, and even then you could tell she could hear/understand what we were saying, and we got a few hand squeezes in. We had hospice, which was great, though we only had them for about a week due to her quick decline. She was able to pass away at home, which made it so much easier on the family and less stressful. She never seemed to be in a ton of pain, and she only got morphine for the last few hours of her life.
Sorry if that was really dark, but I thought you might find it a little reassuring- we were definitely expecting it to be so much worse than it was (though obviously I’d rather have not gone through it at all!).
Keep your spirits up, and know that you’ve got a crowd of cheerleaders who are confident that you’ll continue to thrive and be one of the people who can tell us 10 years from now about your journey!
I suppose no one who loves you can conjure up the perfect words you need to hear. Just knowing you have so many who truly care are words enough. But, we all want to give you more than love and support. That in and of itself ties our hands and tongues. Is there an app for sending hugs? I think your vacation idea rocks!
I love your posts. I’m totally on board with the alternatives to Western medicine. Keep on keeping on. I’m sending light and joy to you and Tina.
Keep Fighting Ken…keep that spiritual connection & continue to just embrace joy & life with your beautiful wife Tina…love you both
Keep fighting the good fight, Ken. Please know that you and Tina are never far from me and Patrick’s thoughts and that we pray for you both.
You have been in my thoughts and prayers so much lately. I wish I could offer something more than prayers. God bless you and keep you and Tina.