Getting A Foot In The Door For Metastatic Melanoma Treatment   August 12th, 2011

As you might recall from the prior blog entry, we have been in an anxious waiting period to see if the National Cancer Institute (NCI) at the National Institutes of Health (NIH) would even agree to see me for their Adoptive Cell Transfer (ACT) research program for metastatic melanoma.

I am pleased to report that NCI contacted me last night and today confirmed that I have an appointment to come in for a full battery of testing and screening in about 10 days. We’ll be in the Bethesda, Maryland area (just outside of Washington, D.C.) for several days, working in a bit of rest and relaxation before and after the testing, which I have been told is quite intense.

The testing will determine whether I am a good subject (biologically speaking) for their research protocol. I have been told by the staff at Mass General that I should hear back about my acceptance (or not) a week or so after the testing has been completed, so by the end of August or beginning of September.

If NCI were to go ahead with me as a subject, the soonest I could be scheduled for any invasive procedure (e.g. surgery or biopsy) would be four weeks after my last dose of Sylatron, because that’s how long they have determined it takes to completely leave my system. With that in mind, I did not take my final (eighth) induction-level Sylatron dose last night, meaning that I will be “clean”  on September 1st.

I don’t know that I will have anything more to report until after my screening, but I am relieved to at least have gotten my foot in the door at NCI for now, and will hope the screening shows I am ideal for their program.

In the meantime, I expect my energy levels to slowly start coming back, along with my appetite, as the Sylatron works its way out of my system. That should mean I can enjoy some nice meals with friends in the DC area when I am there. Woo hoo!

By the way, by odd coincidence, shortly after I finished my blog entry on Wednesday discussing ACT, I came across news that the same sort of process had been using to successfully tackle incurable leukemia, which is an indication of how powerful this process can be when it works. Details are here from CBS News.

 

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This entry was posted on Friday, August 12th, 2011 at 17:45 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.

25 Responses

August 12th, 2011 at 17:52
Hannah Says:

Whoo hoo! Now, to be accepted….. Thinking good thoughts from here on all fronts.

August 12th, 2011 at 18:07
Ann Phelan Says:

positive expectations…thanks for keeping us posted….

August 12th, 2011 at 18:15
Cynde Says:

That is FANTASTIC NEWS Jake!!!!! Keep us posted. At this point, good news like that must feel great (or thereabouts!)

August 12th, 2011 at 18:16
Steve Says:

Good news. Fingers crossed.

August 12th, 2011 at 18:28
Corky and Sy Says:

Great news, Jake! We keep sending those positive thoughtwaves … maybe they’re working. Lots of hugs.

August 12th, 2011 at 18:40
Karen Says:

Awesome news!

August 12th, 2011 at 18:49
Carole B Says:

This is great news Jake!! I saw the same news clip the other day on this procedure and how it did work on the three persons with leukemia…only three were in the test program but all three had excellent results with this new therapy, treatment. I know you will be accepted and will do soooooo well once you are in their hands as a research patient. Have a wonderful time in the DC area and enjoy the hell out of life!! Hugs, Carole B

August 12th, 2011 at 19:25
Wallace Says:

Good luck Jake.

August 12th, 2011 at 19:50
LaDonna Says:

yeeeee haaaawwww!!!! knew they would accept you!!!! HUGS!!!!

August 12th, 2011 at 22:42
dara Says:

I’m just catching up on the wild amusement park adventure your life has become – keep your hands INSIDE the car, my friend! Scream if you can’t help yourself!

Glad you got a foot in the door for the NIH/NCI screening – my fingers are crossed for you.

I am SO thankful you caught this when you did!

You will prevail!

August 13th, 2011 at 01:18
Mark Sage Says:

Best of luck, Jake!

August 13th, 2011 at 01:26
Barry B Says:

Good Luck Jake

August 13th, 2011 at 04:32
Kitty Says:

Way to go, Warrior! May you return with good news of acceptance at NCI in a few weeks!

August 13th, 2011 at 07:40
Denise & Teddy Says:

Very good news Jake, a step forward ! We’ll all continue to send our prayers, good vibes, ‘whatevers’ as you go through the tests.

August 13th, 2011 at 11:45
Liz Says:

Great Jake! When do you expect to be in Bethesda? We will be visiting Christopher in Leesburg and if it coincides with your visit would love to do lunch or dinner!

August 13th, 2011 at 13:11
Leslie Says:

This sounds very promising!

August 13th, 2011 at 16:13
Tish Says:

Hurrah!!!!!!!!!!!

August 16th, 2011 at 20:53
Jamie Says:

Jake, I’m very excited for your treatment and that you will be at NCI (the very best place to be for melanoma). When do you start treatment? I’ll be doing TIL starting in early September, maybe our treatments will overlap. We are local to NCI, so if you need anything at all, please let me know and I am extremely happy to help! Thinking fabulous thoughts for you and sending hope by the ton! Jamie (melanomamom)

August 16th, 2011 at 22:03
Jake Richter Says:

Hi Jamie! Alas, my meeting next week is just for an initial screening to see if they will accept me into the program. If they do, I will likely have surgery to remove the melanoma laden lymph nodes, to harvest any t-cells they can find. I have been told that if we get that far that I would actually not get the ACT treatment until more tumors arose so that they would have something to monitor. If all goes well next week I may well be at NCI for surgery when you are there for your TIL treatment. Would be great to meet in person after following your story these last few months.

Jake

August 17th, 2011 at 11:14
Cecil Berry Says:

A good first step hopefully the door will fully open. I thought this was interesting and good news.

http://www.msnbc.msn.com/id/44174222/ns/health-cancer/

August 17th, 2011 at 16:26
Cynde Says:

Jake, did you see this in the news today?

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm268241.htm

New late stage melanoma treatment approved. I know this probably doesn’t apply to you, but it’s treatment for BRAF melanoma.

Hugs and love!

Cynde

August 17th, 2011 at 17:59
Jake Richter Says:

Yeah, for better or worse, my melanoma mutation is NRAS, not BRAF, so the BRAF-targeted treatments won’t do anything for me. But it’s encouraging that new melanoma drugs continue to show promise and get FDA approval as well.

Jake

August 18th, 2011 at 01:14
Mitch Says:

I really appreciate your ability and the time your taking to illustrate and share these experiences and I feel that you will be offered the opportunity at NCI or another institution and if not then you will just fight on.

You are full of spirit and what a wild right that sprit is on right now. The positive stuff is great for obvious reasons but the learning you are going through, spiritually and intellectually must be immense. I would invite you to listen to some recent online seminars that are changing my life in a similar way, challenging me spiritually and intellectually. I offer that it has hope and love at its center and I would expect you can use all of that you can get your hands on :)

Namaste

August 18th, 2011 at 01:17
Mitch Says:

Forgot the seminar link :)

http://ultimatemenssummit.com/

Fn amazing forum.

August 18th, 2011 at 06:39
Mitch Says:

While trying to sleep last night I realised how matter of fact your blog seems and how damatic my posts may seem. But considering the circumstances….

Anyway, It was also at that point that it then occured to me that if accepted into an ACT program that you would be involved with cutting edge technology and research and that would be just plain cool.

Good luck man and enjoy your day!

Mitch