Next Stop On the Melanoma Train – Treatment!   September 23rd, 2011

If you have a short attention span, here’s the big news: My Tumor Infiltrating Lymphocyte (TIL) with Total Body Irradiation (TBI) treatment starts next week, on Tuesday, September 27th.

The long version, including historical information, follows below.

My week at the National Cancer Institute (NCI) has gone quickly, but not without some complications.

On Wednesday, I got my scheduled stem cell apheresis, this time through my newly installed Hickman catheter. It was wonderful to not have to get stabbed again with needles for this process, especially as the bruising I incurred last week for the feeder apheresis are in full bloom with all sorts of color.

But the stem cell apheresis on Wednesday was pretty tiring too. As I later found out, part of this was because the process caused my magnesium, potassium, and platelet counts to drop significantly. Contributing to this was that this apheresis also required that 30 liters of my blood (about five time the blood supply in my entire body) to be fed through the centrifuge over a six hour period.

I spent the rest of the day resting and dealing with a related headache, under the assumption that all had gone well with the stem cell apheresis. However, at midnight, deep into Ambien-assisted slumber, I got woken up and was informed that they did not manage to collect enough stem cells (the minimum required by the protocol is 4 million, but 5 million is more ideal), and that I would need to go through the process again on Thursday morning. No further details were available, but I was given another pair of Filgrastim shots, and put on an IV with potassium chloride to help boost my electrolytes (and potassium levels).

So, yesterday morning I found myself in the apheresis center again, for another 30 liters of blood processing. Turns out that the first day produced 2.6 million stem cells, so not a complete failure. Fortunately, yesterday’s collection produced another 2.04 million stem cells, for a total of 4.64 million cells, sufficient not to require additional vampiration (and delay treatment). Because of the unexpected second day of apheresis, I also had to rearrange appointments with doctors from radiation oncology and from the dental clinic. In each case the doctors advised me on the side effects of the radiation treatment (which are potentially significant). But other then sterility and an increased chance of early cataracts, only these effects are generally transient (but could last for many miserable months).

I fortunately had also learned first hand about this from a couple where the husband had finished treatment about two months ago – they learned about be from Melanoma Mom Jamie’s blog, and were wonderful enough to look me up at NCI to see if they could help with any questions I had about the process. Thank you so much Pam and Joe!
In any case, the anecdotal evidence suggests that the aftermath of TBI is well worth it in terms of increased probability of response to the treatment. The amount of response benefit is actually what this clinical trial is designed to help define.

Yesterday, I was also told that I had excellent teeth and dental health. I think that was the high point of my day. The day ended with more potassium infusions, and six units of platelets, both of which helped my blood counts creep towards normality.

I wrapped up my stay this morning with a simulation scan to prepare for my full body radiation treatment (which goes on twice a day for three days, starting October 3rd).

The end result was that I now have a bunch of lines on me, drawn with a permanent marker (fortunately not really permanent), with the critical markings covered by waterproof tape. The lines will be used to align my body with respect to the photonic radiation emission equipment. By the time I’m done with the three days of radiation, my body will have absorbed 12 Grays of radiation, and my lungs only 6 Grays. The Gray is a unit of measure that relates to “rads”. It is a significant dose for full body exposure, but small compared to localized radiation.

As I already indicated in the abbreviated version of this blog above, I learned that I have been scheduled to return to Bethesda on Tuesday, September 27th – so a mere four days from now. The first day will be spent getting me all set up, and I start my five day course of chemotherapy on the next day, followed immediately by the three days of radiation.

Again, the whole purpose of these two components of the overall treatment is to kill my immune system as well as the cell generation in my bone marrow. The idea is that the resulting environment (no immune system) gives the TIL the best possible chance to do its thing – namely kill all those nasty melanoma cancer cells that are still intent on spreading throughout my body, without interference from my own normal immune system.

After the TIL cells are administered, the stem cells will be administered, then I get the mind numbing IL-2 treatment to boost the power of my TIL and stem cells, and then there’s recovery…

I will stay at NCI until it is deemed safe for me to be exposed to much of the world, namely when my immune system has recovered enough to ensure that I will no longer be in danger of infection from the most minor germ. Right now, my return date to Boston, as a bald, easily nauseated, and very tired person, is scheduled to be October 20th, but that date is subject to change based on my recovery, and the on-going entropy that is part of my life these days.

I want to extend a very special thanks to Jamie and Jeff for letting me be part of their nightly take-out dinners during my stay at NCI. Thank you both for your friendship and hospitality.

The few days I have in Boston (I am en route now) are going to be spent with family. In fact, my parents flew in from the Czech Republic yesterday – the original plan being that we’d be spending a couple weeks together. However, the melanoma train stops for no one, so we’re down to only a few days together. But that’s okay, because my train’s destination is NED – No Evidence of Disease. And a pig roast at our house in Bonaire in the spring!

Note: I want to mention to those folks who have been depending on e-mails from me for notification of new blog entries, I will no longer be sending out those e-mails during treatment. And I will not be posting notification on Facebook or Google+ either. My upcoming posts, throughout treatment, if I can manage them, will be a lot more succinct than my usual posts, and to see them you will have to remember to check back here at http://www.jakestake.tv every so often to see what’s new.

 

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This entry was posted on Friday, September 23rd, 2011 at 17:11 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

24 Responses

September 23rd, 2011 at 18:00
Kathy Says:

Many good thoughts to you, Jake, as you embark on this latest path toward NED!

September 23rd, 2011 at 18:35
Jessica Says:

Love you, Jake! I’ll be thinking very healing (and cancer killing) thoughts for you. xoxo

September 23rd, 2011 at 18:47
Liz Says:

Jake,

Glad everything went well! So happy you will be spending time with your family. If there is ANYTHING I can do, let me know. Right now I am looking toward NED and the MDs are optimistic…Surgery has been rescheduled for October for repairs, but I’ve already started on preparing for the surgery. Anyway, that is when I will know NED nor NO NED…they will take lymph node from my pelvic/groin area test them, and look around while there are in there….Oh…talk about permanent markers…lol will you be getting the radiation tattoos? I now have permanent pinpoint tattoo marks where my radiation points were…

September 23rd, 2011 at 18:49
hannah Says:

To NED!

Will be thinking of you and hoping for NED!

hugs, hannah

September 23rd, 2011 at 18:58
Wallace Says:

Still thinking about you and including you and your family in my prayers. Best of luck and kick this cancers ass.

September 23rd, 2011 at 19:12
Carolynne S Says:

Jake,

Things are moving so fast for you. It does seem like a melanoma whirlwind. I am very happy your parents are coming to see you and you will all be together for a few days prior to this grueling treatment regime. I know this will give you great strength. I will be thinking you of you my distant cousin. Be a fearless warrior and fight this!

Light and love

Carolynne

September 23rd, 2011 at 19:20
kelly Says:

We’re here.

September 23rd, 2011 at 19:21
Meryl Says:

Unbelievable…keep strong..your pictures look good! As Carolynne said…”be a fearless warrior” and kick butt! looking forward to hugging you all in the spring on Bonaire! xxoo

Steve and Meryl

September 23rd, 2011 at 19:59
Howard Sobel Says:

Jake, thanks for sharing this detailed blog. It really gives everyone great insight into the day to day challenges. I would love to be able to plan on celebrating with you in Bonarire at that roast next spring. Never been there but have been to most of the Caribbean. Meanwhile, stay safe and watch out for falling satellite debris to nite /tomorrow!

September 23rd, 2011 at 20:52
Denise & Teddy Says:

Jake, I can’t seem to find the words to express how much we care … May all the strength of all those who love you combine with yours in these coming months. No words I can find are adequate… but you know what is in our hearts. We’ll be checking in often.

September 24th, 2011 at 02:37
dara Says:

Jake

It’s not too hard to remember to check in – you are in my thoughts daily. Envisioning those turbo charged lymphocytes devouring the cancer cells – every last stinkin’ one!!!!

Hugs, my friend!

September 24th, 2011 at 06:32
LaDonna Says:

hugs and much love to you….and pass some to the rest of the family too! looking forward to seeing you once you get back to Boston.

to NED!

S-B-C

September 24th, 2011 at 08:47
Tracy Griffin Says:

Best wishes for your treatment – we will be checking in regularly! We wish the very best for you – and may you reach your destination, NED, very soon! Good luck with the process and recovery. We’ll be in touch – and will be available if you need anything at all when you return to Boston!

Love and Hugs and Prayers and Healing Thoughts…
Tracy & Mike

September 24th, 2011 at 14:33
Tish Says:

I don’t eat meat, Jake, but I’m gonna make an exception for the pig in order to celebrate NED with you in the spring!!!
Saw the planet’s largest lobster at South Bay this morning and thought what a great photo you would make of it. Guess I’ll have to imagine the Richter family calendar on my wall next year and look forward to what you create for 2013.
Love and hugs,
Tish

September 24th, 2011 at 14:37
Jake Richter Says:

Tish,

A 2012 calendar is in the works, courtesy of the talented Linda :-)

I’m down to three images in this one (by choice).

Jake

September 25th, 2011 at 13:04
cynde Says:

Jake, thanks for the update. It is amazing how the melanoma warrior community comes out and supports each other…gives me a smile to hear you are making connections on your journey, and perhaps, feel less alone in this battle.

I saw tea on the limited diet list, are you still drinking tea?

I wanted to post this here, but I believe it is copyrighted….but it’s my visual of the sword slashing and destroying your disease….

http://jerrykongart.deviantart.com/gallery/?offset=72#/d325hkr

to NED + ROOFTOP TOASTS + PIG IN A SPIT – 2012

Love you my friend….

Cynde

September 25th, 2011 at 13:44
cynde Says:

Jake, can you please remove that ugly link? oops!

September 25th, 2011 at 14:51
Carole Says:

You’re gonna need one hell of a huge, gigantic pig fror the Spring Roast, Jake!!! There will be tons of folks there to celebrate to NED with you on island in the spring. Bless you. You are in my prayers & thoughts. Go get ’em Big Guy!! To NED.

September 25th, 2011 at 17:05
Linda Says:

Here’s to NED and the pig roast on island! Defeat the beasties Jake!

September 25th, 2011 at 19:10
William Says:

Best wishes, Jake, you’ll do fine (look forward to developing a newfound appreciation for hand soap and an aversion to snotty nosed kids). I go to MD Anderson on the 27th for my 6-week post-TIL scans, and I’ll be thinking of you when I’m there. Go, TILee’s!

September 26th, 2011 at 01:04
Francine Dewhurst Says:

Dear Jake,

Sounds like your October will be rough but your family in CA is praying, sending our good thoughts, hoping and toasting to NED!!!!

All our love,
Francine + 5

September 26th, 2011 at 09:01
Lea Nichols Says:

To NED

September 27th, 2011 at 09:02
Mona Wirth Says:

We are sending hugs and prayers for a incredibly strong TBI warrior response and NED! Please visualize all of us at the sidelines encouraging and supporting you.
Those of us on the sidelines can support cancer patients going thru chemo by donating blood. It is a pretty easy to do. My appointment to give is Friday, the required one year after returning from Peru. It will be to support a local cancer warrior here. Please join in giving every 56 days!
Jake is such a warrior! We can be an army of support!

September 28th, 2011 at 10:43
Cynde Says:

Mona….

“Jake is such a warrior! We can be an army of support!”

LOVE IT! Love the visual of us all on the sidelines cheering our Jake to NED!