Never a Straight Path To NED With Metastatic Melanoma   November 29th, 2011

The last three weeks have not been particularly enjoyable, filled with uncertainty, angst, and a modicum of hope that what I was facing was just a minor hiccup in my treatment.

It all started on Monday, November 14th, when my doctor at the National Cancer Institute (NCI) called to tell me that their radiologist had been unable to load some of the images from my brain MRI the prior week when I was at NCI for my monthly evaluation and consult.

Unfortunately, the news wasn’t very good. Turns out that in contrast to what we were told during the consultation, the brain MRI was not clean, but that there were five “mets” (short for metastatic tumors) in my brain – the largest being 6mm (the size of a small pea) across and on my cerebellum. The other four mets were quite a bit smaller, with two each on opposite sides of my brain.

I was also informed that since I now had brain tumors (under the assumption they had formed after my TIL treatment on October 7th) I could no longer be part of the protocol (no brain tumors allowed in the protocol), meaning no more free monthly evaluations at NCI (which made the costs of CT scans and MRIs completely free to me – no insurance involved. I was therefore being remanded back to the care of my oncologist at Massachusetts General Hospital (MGH).

While we really like my oncologist at MGH, the news was a real blow – a stunning reminder that with melanoma, nothing is predictable, and that there appears to be no simple, straightforward path one can rely on in treatment, even with TIL. I would have thought my initial reaction would have been depression, but in fact it was sheer anger at this stupid melanoma and its inability to stay put and let itself be exterminated by my TIL treatment.

We made contact with my oncologist at MGH (it turns out that the immunotherapy group at NCI regularly consults with him as an expert in the field of melanoma treatment) to figure out what to do next. After reviewing our notes we were thinking that the brain tumors could have formed in the three weeks before my TIL treatment started which gave us hope that the TIL treatment might be shrinking the brain tumors in which case I could be readmitted to care at NCI. In meeting with the brain-radiation oncology specialist at MGH the following morning, we came to an agreement that I would get a brain MRI in about three weeks to see if the tumors had shrunk. If they had, I would be remanded back to NCI. If they were unchanged, we would monitor with a later brain MRI. If the tumors had increased we would go ahead with whole brain radiation.

That MRI took place last night, and this morning Linda and I met with the radiation oncologist. Turns out there was a fourth option we hadn’t considered, namely tiny little hemorrhages (bleeds) at the location of the previously found tumors, along with “new small regions of hemorrhage and in areas of previously uninvolved brain” (from the doctor’s notes), suggesting that there were tumors that were too small to be seen in the MRIs, but having an impact nonetheless. This apparently is not uncommon with melanoma mets in the brain.

Also, there was certainly no shrinkage in the previously detected tumors, and there might have been minuscule growth (which appears to be within the margin of error the MRI machine, so that’s not entirely definite either).

These factors, especially the hemorrhages, pretty much necessitate the whole brain radiation, which will stop any active bleeding (the MRI can’t distinguish between active and non-bleeding hemorrhages), as well as kill all the cancer cells in the tumors and elsewhere in my brain. That means I will likely (very high probability) be free of melanoma and bleeding in my brain after the whole brain radiation. There will be another brain MRI sometime in February to confirm.

Note too that the whole brain radiation apparently has no impact on TIL cells outside the brain, and it’s unclear if it has a negative impact on the TIL cells in the brain. Seeing as TIL cells are white blood cells, it’s unlikely, but unknown.

As a result, I started a 13 day course of whole brain radiation today at dose of 2.5Gy per day (takes all of 30 seconds for the two exposures needed, but about five minutes for set-up and tear-down). I had to get a form fitted mask made to ensure my head would be perfectly aligned to avoid irradiation of non-brain parts (eyes, nose, etc.)

The custom face mask made using my face - the mesh allows for easy breathing

The custom face mask made using my face - the mesh allows for easy breathing

 

I will need to go into the radiation oncology facility at MGH every week day through December 15th for this radiation treatment. While the treatment is quick, if the Linac device I am scheduled for (there are three there, and I’m assigned to a particular one for the duration of my treatment) is backed up with other patients, I may have to wait up to an hour for my radiation treatment.

Me with my custom mask on, getting ready for my first dose of whole brain radiation

Me with my custom mask on, getting ready for my first dose of whole brain radiation

The side effects of this treatment are likely to include hair-loss – Hah! – I have that one covered! (see photo below). In my case it will mean that my hair will take some months longer to grow back. The other likely side effect is fatigue, which would be layered on top of my existing fatigue, which has not been significant so far. The radiation oncology doctor indicated that some of his patients are prescribed Ritalin to help overcome radiation induced fatigue.

Jake Self-Portrait - November 16, 2012

Jake Self-Portrait - November 16, 2012

Still missing from the above is a discussion with my melanoma oncologist about what to do about follow-up body scans to see how the TIL treatment is working, since NCI won’t be providing these any more (meaning, by the way, that our planned trip to Bethesda next week no longer exist). Another discussion that will need to take place is whether it’s a good idea for me to have some other sort of systemic treatment, like ipilimumab (Yervoy). Those discussions should take place in the next six weeks.

For those of you wondering, our trip to Bonaire at the end of the year, necessitated by the requirements of our special medical insurance for U.S. citizens who are foreign residents, is not affected by the radiation treatment. I’m hoping the fatigue won’t interfere with the enjoyment of the trip back home.

So, while these dramatic changes are frustrating, the fact there is a plan that will deal well with my brain mets in place gives me hope that we can move back to Bonaire full-time in April 2012, with my taking occasional trips to Boston for appointments while finding a guest bedroom to crash in with family and friends during my visits.

Some other miscellaneous notes that might be of interest to those of you following things more closely:

Dry Mouth Update – My dry mouth continues to improve. Sleeping with the dry mouth is no longer a real issue. If things get too dry I use a dry mouth mouthwash to un-dry my mouth. I can now taste and enjoy a pretty wide range of flavors (within the bounds of my neutropenic diet). Exceptions are spicy (chili pepper spice, like cayenne) foods, and foods with high acidity. White wines are unpalatable at present because of this, and red wines are drinkable but not as enjoyable yet as they were before my treatment. I don’t suffer a lack of appetite, although my shrunken stomach has physical limits as to what will fit inside.

A New Richter Cousin – One of the nicest unexpected side benefits of my melanoma treatment has been the discovery of a heretofore unknown Richter cousin. I first met Carolynne at the PET scan waiting room at MGH early this past August, and we got to talking about our respective melanoma occurrences and spread and the fact we both had the rarer NRAS gene mutation instead of the more common BRAF mutation. When I came back from my injection with the radioactive isotope, she and her husband Mark were gone. But a month or so later Carolynne had found this blog and sent me a message to explain her maiden name was Richter. With my father’s help, we found that our family tree shares an ancestor from the mid-1800s, and that her next generation ancestor after that was the brother of my similar generation ancestor. Look at the picture below and judge for yourself. The photo comes from when Carolynne and Mark came to visit us for a few hours of social and melanoma chat about a week ago. Definitely a major highlight of November for me.

Richter Cousins

Richter Cousins

Weight and Girth – My weight post-treatment has been holding steady at around 200 pounds. Sadly, a lot of that weight loss is muscle tissue, and not the roll of chubbiness around my mid-section (though that has decreased too). I have not weighed that little since late junior high school or early high school, when I was also a number of inches shorter than I am now. My waist is down to around 32″, the same as that of my 14-year old son Bas.

Neutropenic Diet – I am presently more than half-way through the three months that I need to be on my neutropenic diet, which ends on January 6th. I will be looking forward to my first medium-rare bone-in rib-eye after that date, with a green salad. Both are things I am not allowed to eat at present. I’m also planning for Bobbe Jan’s ribs and fries on January 6th, my last evening home on Bonaire before flying back to Boston. Yum.

That’s it for now. More when notable stuff happens, and apologies for not posting sooner, but we didn’t want to increase the amount of anxiety in our families and friends until we knew what was happening.

 

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This entry was posted on Tuesday, November 29th, 2011 at 21:12 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.

41 Responses

November 29th, 2011 at 21:28
LaDonna Pride Says:

hugs!!!!

November 29th, 2011 at 21:32
Jessica Says:

Wow, Jake, thank you for the update. What a heck of a few weeks it has been. Love from California! xo

November 29th, 2011 at 21:45
hannah Says:

Thanks for the update, too. I am constantly toasting to NED for your sake as well as others who are battling as well.

Hugs from Maine…
hannah

November 29th, 2011 at 21:51
Wallace Says:

Thanks for the update. You are in my thoughts daily.

November 29th, 2011 at 22:08
Bill Heyman Says:

Jake –

Keep at it! It’s nice to know that your path to NED, although modified, is well within sight.

Bill

November 29th, 2011 at 23:13
Jean Stefanik Says:

Hi Jake & Linda,
Thanks for the update… and know you are both in my thoughts for positive outcomes. I’m glad you are enjoying food more than a while ago! Simple pleasures are good.
I appreciate the detail of your journey, both to compare with my own experiences with melanoma, and from helping my brother Ted with his brain tumor 12 years ago. Have you by chance come across Dr. Jay Loeffler at the Proton Therapy center at MGH? If so, please say “hi” for me if you have a small appropriate moment.
Keep up the anger at the melanoma, and the positive attitude for the future, and continue to appreciate every day with family and friends, as I know you are. And enjoy the trip home to Bonaire! Hugs from me, Jean

November 29th, 2011 at 23:22
Barbara Leary Says:

Hugs from California, hoping for bigger muscles and smaller tumors.

November 29th, 2011 at 23:47
Nell Says:

Lots of hugs and good thoughts coming your way from DC. Asking Lil to send her healing powers your way as well. Love, Nell

November 29th, 2011 at 23:54
Mercy Says:

I second everything Barbara said above!! Positive affirmations….MY BODY IS HEALTHY AND FREE FROM DISEASE!!

November 30th, 2011 at 00:28
Corky and Sy Says:

Hugs from Cranberry Lake, NY. Keep thinking positively … we are.

November 30th, 2011 at 00:49
Kathleen Says:

Maybe I should say we need good surprises. I’m sorry to hear about the detour but your doctors sound great. Think of it as house cleaning — with an irradiating monster ray gun — but house cleaning nonetheless. Good thoughts and much love.

November 30th, 2011 at 00:59
Liz Says:

You are all so both in my prayers and thoughts! I will know tomorrow the results of the biopsies taken during my surgery 10 days ago. Looks like I am pushing towards NED! Unfortunately, a large amount of tissue damage was done from radiation, so “getting back to normal”, may just be a new type of normal. When you get back from Bonaire, we REALLY want to try and get together. A trip to Boston may be needed! Hugs to you all!!!

November 30th, 2011 at 01:06
Carole Says:

Hi, Jake. I was going to say “you continue to amaze me” but that would not be accurate….you are amazing all of the time, my Friend. We are all here for you one million percent. I know the trip home to Bonaire will be some of the best treatment you could receive. Enjoy yourself! Big hugs from me & Joe.

November 30th, 2011 at 04:24
elaine sculley Says:

jake

thank u so much for keeping us informed. continued prayers and a safe trip to bonaire. hugs coming to u, linda, krystiana and bas.

November 30th, 2011 at 05:30
Tish Says:

Thanks for the very detailed update, Jake. We are all grateful! Your cousin could be your twin. What a great discovery! Look forward to welcoming you back to Bonaire.
Hugs and love to you all!

November 30th, 2011 at 09:07
Denise & Teddy Says:

Jake, My heart tightened as I read of your latest twists and turns in the road. I wish we could just make it all easier with gentle hugs. Having said that, I know you are in good hands and that you are a true warrior. A very nice warrior of course, but a strong warrior too – a great balance in you. I am happy that you will get to go home home soon, and happy to see your family has expanded. It sure is a small world!

More hugs to you and all your family…. To NED

November 30th, 2011 at 10:40
Shella Says:

As always, you are in my thoughts. I truly appreciate the time you take to share this journey. I am learning more than you can possibly imagine. Keep up the fight. You are going to win!

November 30th, 2011 at 10:50
Steven Says:

Finishing Concept and an art history course. Concept is by far the hardest class in the program so far. This is where they weed us out before Thesis Project Seminar and Midpoint Review. It’s been a rough semester, but I’ve done my best, and may have a direction in the program. Hope so. We miss you at AAU. What you’re going through makes Concept look like a cake walk. Best Always.

November 30th, 2011 at 10:55
Steve Smith Says:

Jake,

Frustrating news on the brain mets. I appreciate the honesty and details. The fight goes on. I am betting on you all the way. Glad you will still get to be home for Christmas and New Years. Enjoy those ribs!

November 30th, 2011 at 13:49
Ann Says:

Dear Jake,

Thanks so much for your update – we are thinking of you, Linda, Krystyana and Bas each and every day and send you our love. You are strong and we stand by your side to kick this darned melanoma. Give it a good kick in the you-know-where! Even with the change in direction, we toast to N.E.D. Bill and I will be going to Bonaire on December 17th this year. If you are up to it, we would like to stop by and give you a whole bunch of heartfelt hugs in person! In the meantime, we keep sending them virtually.

Love,

Ann and Bill

November 30th, 2011 at 15:29
Jessica Says:

Jake, would you like to see how some Praeger might tickle your taste buds?

November 30th, 2011 at 15:36
Alan Says:

Jake, your attitude continues to inspire, and have a great trip back to the island!

November 30th, 2011 at 17:53
Darlene Ellis Says:

Great big bear hugs are sent your way!!! You are in my daily thoughts and prayers. Keep up your great attitude! You have the ability to make lemonade from lemons and I know that will help you through the twists and turns on your way to NED!
Lots of love to you and the family and more hugs too!!! :)

November 30th, 2011 at 20:10
Ann Phelan Says:

Bonaire…ahhh..a wonderful homecoming…the doggies will be so happy..April 2012..here here

November 30th, 2011 at 21:49
Dara Says:

Jake,
You continue to be in my thoughts daily and I was anxiously awaiting the next installment from the Melanoma Warrior…campaigns are won by those who are fexible, decisive and quick to adapt to the changing circumstances as the battle unfolds; my bet is with you and the top notch advisors guiding your care and decisions. An optimistic attitude remains your strongest ally. On a really positive note, how wonderful to discover a shirt-tail cousin! And she looks so much like you! That’s pretty awesome! Continued healing energy and cyberhugs to you, Linda, Bas and Krystyana from the frigid Midwest. Wishing for no more potholes on the road to NED! Dara

December 1st, 2011 at 01:17
Kathleen Dewhurst Says:

Hey, Jake, Linda and family… Dave, Sam, C & T are with us here in Phoenix. We’re having fun with my 6 grandchildren: Ted, Charlotte, 4 year old Elias and the triplets. My niece’s wedding is Saturday. Thanks for the update, I’ll be thinking of you all, love to you all. Kathleen

December 1st, 2011 at 17:13
Scott Says:

Much love and thoughts to you Jake. What keeps me smiling is your bright smile. A big fat hug :)
-Scott

December 1st, 2011 at 17:53
Karen Says:

Lots of love and hugs coming your way!
Enjoy Bonaire like it was your first trip…

December 1st, 2011 at 19:13
Karen Says:

Hi Jake,
I have prayed for both you and Carolynne. I have known her since I was 10 and she was 7. You have both had some journey. She told me the story when she came to visit me after my hip replacement. Amazing!
Karen

December 1st, 2011 at 20:41
chosun Says:

hi jay,

It sounds like your situation is trying.

Oh boy. You Hang in there handsome.

Our Love and good vibes are directed to you and your family.

You are a beautiful person, being, giving so much beauty and joy and knowledge to all you touch, kiss, touch….

With Love,

Chosun

December 2nd, 2011 at 00:56
Glen Reem Says:

It seems no path in life is ‘straight and narrow’. Here’s hoping that your crooked, and rocky, road is trending upward, to a higher (earthly) ground and NED.

December 3rd, 2011 at 06:44
Jarmila Richter Says:

My heart sunk when I read this blog. It is a real rollercoaster and you are holding well in the face of this hideous and aggresive ailment!

You are in our thoughts continually, keep fighting!
Love, mom.

December 4th, 2011 at 07:39
Vince D Says:

Wishing you well. Sorry to read this latest blog. Your long lost cousin could easily pass as your sister. Enjoy the ribs at BJs in Jan! I’m sure it will be a pleasurable experience getting back to Bonaire.

December 4th, 2011 at 23:08
Anita Says:

Wishing you and your family energy and strength! Jake, you have taught me so much about life through your documented experiences. Your words teach me how to better prepare for the unforeseen, and how it is possible to see positive out of a situation which can be shadowed by the unknown at every turn. Continue to proudly march forward – you are an inspiration.

December 6th, 2011 at 18:13
Dawn Spencer Says:

more prayers on the way. Thanks for sharing, hope you can relax and enjoy your time on Bonaire. Merry Christmas Jake & Linda and Best Wishes for a healthier, happier New Year!

December 8th, 2011 at 19:31
rolf ehrlich Says:

All the best wishes and fervent prayers to a great guy who has helped so many Bonaire visitors, and me personally, for some 20+ years

December 9th, 2011 at 16:54
kim nixon Says:

You are an inspiration. Someone I aspire to be like. Keep up the fight, you are stronger than you know.

December 11th, 2011 at 21:08
Denise & Teddy Says:

Hi Jake, I am thinking of you every day, as you are going through this “13 day course”. Counting down and waiting for NED on the horizon. We are all looking forward to reading that you have set foot home home on Bonaire soon. Hugs to you, Linda, and the kids.

December 12th, 2011 at 13:42
Tara Smith Says:

Dec 15th is just around the corner, Bonaire is within two weeks, and Bobbe Jans is a mere hop-skip-& a jump from there.
It may not be a straight path but thankfully each step is a step closer. Your spirit is as beautiful as your smile!
Hugs to you, your new-found cousin (so cool) and extra tight for Linda, Krystyana and Bas

December 14th, 2011 at 11:35
Cynde Says:

Jake,

I read this post the day you wrote it, but it’s taken me awhile to find the words to respond. Unlike the brain mets (as I’m sure you do too). Sort of looks like a fencing mask though, so I imagine your TIL cells and the radiation waves slashing away at the brain mets when you had that on (at least that was my visual).

You haven’t posted an update, so I imagine you are warrioring away the melanoma. I’m also visualizing you taking that first bite into ribs at Bobby Jan’s….I’m sure it will feel good to step off that plane and smell the clean Bonaire air and go “home.”

I think of you every day, and continue to send healing vibes your way. Are you listening to any particular music that you could share with us fighting this journey with you? Anything you need? Do you have enough hats to keep your noggin warm in the cold Boston air?

Hugs and love,

Cynde

December 16th, 2011 at 19:41
Jake Richter Says:

Hi Cynde,

Definitely cannot wait to be back home on Bonaire again. All set on hats for my cold bald head for the moment. As far as music goes, I’ve been bouncing around Pandora between Christmas music and other stations I’ve created over the years. Not quite up for cancer-beating music (or life affirming music), as that would be emotionally challenging to deal with. I’m going to be going through enough Kleenex on Bonaire as it is, I expect, as I get together with friends and catch up with them.

Jake