Still on the Path to NED   November 10th, 2011

Yesterday I spent the day at the National Cancer Institute at NIH getting scanned and poked. The poking started my day at 7:30am with an apheresis to process five liters of my blood (basically, my whole blood volume) to extract white blood cells for future research use and review when the clinical trial I am in ends (which will be once the 118 candidates have all gone through treatment in a year or more). The wonderful apheresis nurses managed to jab me only once per IV (I needed two lines – one in, one out), and even set it up so one of those IV lines could be used for my scan contrast injections later in the day.

I had CT scan first, from neck to knee, and then an MRI of my brain and my liver.

All told I was at NCI for 10.5 hours for these three procedures (they took my blood during apheresis as well). I was beat, so we had dinner at the Tastee Diner around the block from our hotel. Food was decent diner food, but the highlight was the people watching and ambiance.

This morning we had a very nice brunch at the Louisiana Kitchen with friends Mark and Resa – whom we knew from many years ago both from Bonaire and the BonaireTalk on-line community Linda and I had started a dozen or so years ago. We’ve been corresponding frequently in the last couple of months, and it was nice to see them in person.

And this afternoon (I’m being extra wordy because I’m working to build up the tension to the information you are all really interested in) we met with my doctor and medical team to learn what the scans revealed. First, the dietician came in and when we explained all that I was able to eat, and how well my taste buds were recovering in such a short time, she was elated, telling me that I was months ahead of where she expected when I left the clinical facilities three weeks ago.

Next in was the research nurse managing the clinical trial. She was happy to see my progress in terms of eating and fatigue, but cautioned me that in her experience, everyone who has had the radiation so far has suffered significant set-backs after the first two to three months after treatment. She indicated she would be happy if I proved her wrong, but thought it was much more likely than not that I would have a serious crash in terms of fatigue and other symptoms by the end of the year and that recovery would be rough for a bit at that point. Linda and I are both hoping that she’s wrong, since I’m already at the same equilibrium I was at before treatment, at least in terms of being a bit of a couch potato.

And finally, it was time for my doctor. She expressed genuine joy and happiness at how well I was doing physically, indicated that while my blood work showed a few below-normal indications, it was perfectly normal and stable for where I was at in terms of recovery. Then she gave us the scan results: No new growths, and the tumors they had been tracking for size showed an average decrease in size of 4.4% compared to the scans taken a right before my treatment started, and a week before I got my TIL cells. Considering my tumors had a week to grow after that last scan, a 4.4% reduction actually translates to something a little bit more numerically, we believe. And no new growths is excellent news too.

We asked her about the tumors in my thigh that have disappeared, and she indicated they had been too small to measure previously, falling within the measuring margin of error, but indicated this was a positive sign. She also confirmed she could see on the scans that the baseball-size lump I had in my thigh had gone from rigid to mushy (same as we had discerned by feeling the lump over the last few weeks), and appeared to be becoming more cyst-like instead of tumor-like, which suggests that the body is working to dispose of it.

While 4.4% percent may not seem like much, considering how rapid the growth and spread of my tumors had been up through the end of September, it’s an amazing achievement.

My next appointment for scans and meeting with the doctor is set for December 5th & 6th, and that meeting should shine further light on how well my tumors are shrinking and keeping me on the path to NED.

In a related matter, we resolved a problem with our insurance company this week – they appeared to be trying to prevent me from renewing my health insurance for next year – but that has now been worked out and I am renewed for 2012. One of the requirements for renewal (as this policy covers U.S. citizens who reside outside the U.S.) is that we be residing outside the U.S. on the renewal date, which is December 28th. As such, we will be spending the end of the year, and the beginning of next year – with my doctor’s blessing – back home on Bonaire. We will arrive on Christmas weekend and leave a week after New Years. For us, being back on Bonaire will truly be a reason to celebrate. And my biggest wish for that time is that I will not be suffering the extreme fatigue the research nurse warned me about, so that we can spend some time catching up with friends and home.

 

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This entry was posted on Thursday, November 10th, 2011 at 23:06 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.

33 Responses

November 10th, 2011 at 23:31
Bill Heyman Says:

Congratulations on the continued improvements, Jake!

It actually must be a pleasant surprise that you actually HAVE to go to Bonaire for the holidays. That’ll be a great trip for you (assuming the fatigue stays at bay)!

Keep up the path to NED!

Bill

November 10th, 2011 at 23:32
Howard Sobel Says:

Great to hear good news.

November 10th, 2011 at 23:35
Jessica Says:

Jake, what terrific news. Keep on going, my friend!!

November 11th, 2011 at 00:19
Steve Smith Says:

This all sounds great (except for warning from research nurse). Holidays in Bonaire ain’t all that bad. :-)

November 11th, 2011 at 01:57
Barbara Leary Says:

Retreat of the tumors! YES!!!

November 11th, 2011 at 06:01
Scott Says:

4.4%: path to NED :-)

November 11th, 2011 at 08:17
Leslie Says:

I like 4.4%!
I’m not surprised about your taste buds– Yours are probably the pro athletes of taste buds with the workouts they get. Of course they would recover quickly!

November 11th, 2011 at 08:24
LaDonna Says:

:D I have a big smile that won’t go away! see you later today! :D

to NED!

November 11th, 2011 at 09:01
Glen Reem Says:

Good News, Jake.

November 11th, 2011 at 09:18
Mike Drips Says:

Great news Jake! Um, there was no mention of beer in your posting, are you OK? The guy who owns Bonaire’s sole car will be happy to see you two return. Happy to hear that you are keeping insurance coverage whichever of the demonic companies gives you coverage. So what about Thanksgiving? I’ll be at McDonald’s. You going to be in the States still then, eh?

November 11th, 2011 at 17:08
Jake Richter Says:

Mike – I’m a wine drinker (or at least was until my taste buds freaked). Hope to be again soon, though. Finely crafted ales are for my lovely wife :-) Not sure what we’re doing for T-Day, but we will be in the Boston area at the time.

Jake

November 11th, 2011 at 09:51
Darlene Ellis Says:

What a great Thnaksgiving present!!!! The news of no new growth and the shrinking progress of existing tumors is fantastic!!! All the prayers that you have going for you are being answered!!!A toast to NED and a great Warrior!!!
Love to you and the family!!! Darlene

November 11th, 2011 at 10:11
Ellen Horne Says:

WOW! This is so wonderful I am so glad to hear these developments. Just fantastic. To NED indeed! Right on! And spending christmas at home sounds like a richly deserved treat. Hooray!

November 11th, 2011 at 10:25
Ford Says:

This is very welcome news indeed. I am looking forward to sharing this with my family this afternoon. And Christmas in Bonaire — now there’s a blessing with a twist!

November 11th, 2011 at 11:41
Jamie Says:

FABULOUS new, Jake! I’m so happy for you!!! Gooooooo NED! Hope to see you in December.

November 11th, 2011 at 12:10
Lisa Amidei Says:

WOOOOOOOOOOOO HOOOOOOOOOOOO!!!!!!!!!! Enjoy your trip home, I too hope and pray the fatigue stays away. May it be just a short time after that before you’re home for good.

To NED!

November 11th, 2011 at 13:21
Cynde Says:

Jake, no better news for 11/11/11! I too, hope the research nurse is wrong. I think we will just miss each other on Bon. I’m arriving on the 14th. You’ll be gone then? shute…Guess I’ll just have to come to Boston to give ya’ll hugs.

Big smile on my face. TO NED!!!!!!

Hugs and Love,

Cynde

November 11th, 2011 at 17:07
Jake Richter Says:

Hi Cynde,

We leave on the 7th of January, so we’ll miss you on Bonaire. I will likely have my January scans that next week after we get back to Boston.

Hugs and love back :-)

Jake

November 11th, 2011 at 13:30
Tish Says:

Hurray! Look forward to welcoming you home for the holidays.
Love and hugs,
Tish

November 11th, 2011 at 13:37
Denise & Teddy Says:

… grinning from ear to ear over your latest update; reduction in size, turning mushy, and “Home Home” for Christmas. Happy New Year !

Thank you Jake, for making me smile today.
To NED

November 11th, 2011 at 14:50
Nathalie Says:

So happy to hear all the positive news. How wonderful that you’ll all be home for Christmas. I imagine that will seem like a wonderful gift of “normal” for all of you, especially if, as we all hope, you are feeling well.

To NED

November 11th, 2011 at 18:15
Karen Says:

Yippee!

November 11th, 2011 at 22:10
dara Says:

HOPI BON!!!!!! Shrinking tumors is wonderful news to give thanks for! Hooray!

Please forward your mailing address; I thought you had posted it but could not find it as I looked back among the postings. What a long way you have come since March. I was looking at the original pictures and thinking of my own BCC incision (now very red and angry)and am thankful you are not allergic to suture thread!!!

November 11th, 2011 at 22:19
Erin Says:

Yay!! So happy to hear this news!! Wish I had gotten to see you yesterday but I will be there those days in December to give you a big hug!

November 12th, 2011 at 16:23
Tracy Griffin Says:

Congratulations!! This is fabulous news! I’d say shrinking tumors and no new growths is excellent news – and the beginning of the path to N.E.D! We’re so happy to hear you HAVE to go to Bonaire for Christmas and New Year’s – that is the BEST! And… hope you are still feeling this well during your trip HOME…. Love and hugs to you and your family!!!
Tracy & Mike

November 12th, 2011 at 19:33
Vince D Says:

EXCELLENT… I’m sure you’ll also experience the great healing vibes by being “really at home” on Bonaire.

November 12th, 2011 at 20:17
Mercy Says:

Yippppeeeee is all I can say!!

November 12th, 2011 at 21:01
Margreth Says:

Jake and Linda,
congratulations are in order on this blog. Keep the good faith and of course, lots of love for the whole family.
Hugs and kisses
Jan & Margreth

November 13th, 2011 at 13:31
Jarmila Richter Says:

Jake,

the results are encouraging. I am happy for you! Still have hard time to figure what is going on in your body, it’s like a good guys are fighting the bad guys, isn’t it?

Kep them fighting!
Love, mom.

November 13th, 2011 at 14:08
Jake Richter Says:

Mom,

In a nutshell, yes – the good TIL cells are fighting and killing the bad cancer cells :-)

Love,

Jake

November 17th, 2011 at 15:04
Anne Lambert Says:

Congratulations on your progress. I have been following Jake’s Take for months, ever since Jean S. told me about your diagnosis. I met you and Linda through Seamark many years ago, and had dinner at your home in Bonaire after delivering a package for you. I work in the health care field. Thanks for the education on melanoma. I value your comments, insight, honestly and perseverance. Best wishes this holiday season and always.

November 17th, 2011 at 21:02
Anna and Art Says:

Much to be thankful for. I see those tumors disolving to a pile of mush and evacuating quickly out of your body. NED

November 21st, 2011 at 11:43
Judy Workman Says:

Thinking of you and your family and wishing you a Happy Thanksgiving Jake!