We learned yesterday that the tumor has grown and is currently about 8 x 5 x 6 cm. I have been feeling pressure in my head and taking steroids to combat the swelling and pain.
One opinion is that we did an MRI too soon. We didn’t give the chemo treatment long enough to show effects. We should have just done a CT scan now to check on bleeding, but other opinions said to go ahead and get the MRI done, which is kind of what I wanted to just go ahead and do.
We are in discussion with my local oncologist, Duke oncology and the NIH to determine the new course of treatment. It’s time to get aggressive again.
While the news was not good, I’m still hopeful and positive that we’re going to reduce this tumor and come out fine. I still feel well and remain mostly asymptomatic. I have a small blindspot that will probably keep me from driving for a while.
Detailed MRI Findings: Again seen is a heterogeneous T2 hyperintense intra-axial mass in the right frontal, parietal mid convexity extending intrinsic high T1 signal. The mass is increased in size from the prior study, currently measuring 4.8 x 8.8 x 6.6 cm. This is increased 3.1 x 6.4 x 5 cm. There is heterogeneous enhancement in the mass following contrast administration. There is increased mass effect as well with a 6.5 mm of right to left subfalcine shift. Previously, there was no midline shift. There is no significant surrounding vasogenic edema. No new area of abnormal fluid collection. Ventricular size remains within normal limits. The cervicomedullary junction is normally positioned. Pituitary gland volume is within nomal limits.
The topic of palliative care keeps coming up.
A Winter evening in the garden
This gallery contains 7 photos.
Had good blood results today. MRI is scheduled. This post is just me sharing some snapshots of me exploring my back garden tonight.
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.
I had a CAT scan on Tuesday to determine if my tumor stopped bleeding. It seems to have stopped. [Yea!]
But, It was determined that that tumor has grown about another centimeter. [Boo!] (Crowded skull = More seizure risk = not good for motorcycle riding.*)
Duke wants me to get back on IV Avastin tomorrow (Friday). Remember that Doctors speculate that the Avastin caused the bleeding in the first place but it’s also the best chance to shrink the tumor. It’s all a gamble.
Since there’s swelling going on in the brain, I’m going to start taking the steroid Dexamethazone (Dex) again. Because the tumor seems to be going strong, it’s finally pissing me off. Because of this, I’m already in a volatile mood. We know from past experience, that Dex makes me hyper and aggressive (or you could say, an ass – ask Tina). So they gave me some Ativan in case I switch from Jekyll to Hyde.
Next week I head to the NIH in Bethesda Maryland to see what they have to offer and suggest up there.
Wednesday, I had an appointment with someone new — a pranic** healer, Deborah Quibell. Later I will meet with her partner, one of the only ten Master Pranic Healers in the world, Hector Ramos (http://alicorninstitute.com/sessions/hector-ramos/), because he is in Manilla now for a few weeks time.
**Pranic Healing approaches energetic health and wellness in a clear and systematic manner, understanding the comprehensive energetic anatomy of the body and aims to help the client maintain a state of balance and good health on all levels – physically, energetically, emotionally, mentally and spiritually.
Not physical pain. Mainly mental/emotional.
I’ve had a few angry moments lately. Luckily, Wednesday was a sunny day so I went out and put some miles in the saddle. (I couldn’t possibly have another seizure (right?). But I go slow(ish) and point away from pedestrians. [and went on four long walks with Tina]. Neighbors and friends are vigilant in supporting and helping us. [and we are both over the moon with joy that the Meal Train has started back up again!]
Note: Text indicated in BLUE above was snuck in by guest writer and caregive, my beautiful, patient wife whilst I lie sleeping.You could tell it was too cute for me to write, yet it’s all true.
Bedtime — More Infusions tomorrow
I’m going to hate getting in that infusion chair again. Looking around at a bunch of poor sick bastards. It’s kind of friendly and comforting actually. But i I thought I was in a bad mood yesterday, watch out for me on Friday.
Sorry I didn’t have any useful information to provide to others going though this too. If you haven’t seen Chad Mossman’s blog, he captures great info and data bout his journey. It’s a worthy read Aqt http://aheadofcancer.com/
Mommas don’t forbid your babies to ride motorcyleS. Just teach em to be smart , safe, fun, thoughtful