It Could Be Worse… More Twists and Turns in My Cancer Treatment   August 1st, 2011

This was originally meant to be a blog entry about my upcoming radiation treatment, and the tattoos I now have (three small dots) to align the linear accelerator beam, among other things.

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

However, at the same time as I was getting set up to start radiation treatment for the end of August, I also had a set of CT scans performed to see if my cancer had metastasized (spread) elsewhere in my body. I got word Friday evening that some areas of concern were found in my scans, but that I would need to wait until Monday (today) to learn the specifics.

Needless to say, there was a lot of stress floating around our apartment, as we feared the worst from the scans.

However, in today’s meeting with the oncologist, we learned that what the scans showed was that my inguinal (groin) lymph nodes are enlarged. In particular, deep under where I already had about 20 lymph nodes removed in my right groin, there is a lymph node that is over 3cm in size (well over an inch), and a number of smaller lymph nodes nearby are larger than they should be as well.

In my left groin region are several lymph nodes that are in the 1.5cm range.

The CT scan cannot tell if any of these lymph nodes are cancerous, but 3cm is huge, and the probability that it is cancerous is almost certain.

The good news is that there was no sign of abnormal growth anywhere other than my lymph nodes, which my doctor says he still considers a regional manifestation, and not distant metastases. That means, for what it’s worth, that I’m still technically Stage IIIC, and not Stage IV.

The actual details of what happens next are still to be worked out once my oncological surgeon returns from vacation next week (I meet with him next Tuesday morning), but I am now scheduled for a PET scan on Wednesday, and the results of that scan will help determine what action should be taken with respect to the swollen lymph nodes in my left groin, such as getting a biopsy or simply removing them outright.

The much larger lymph node in the right groin, however, will definitely need to be surgically removed, along with the other enlarged lymph nodes in the vicinity of that one. The thinking is that I will only have one surgery to deal with nodes on both sides of my groin, and that will require a bit of planning and decision making next week.

So, instead of starting radiation treatment at the end of August, I will likely be recovering from yet another surgery, with lots of mandatory bed rest, and hopefully no drains (or only short-lived ones). I will then get my planned radiation treatment once my wounds have had time to heal for a couple of months.

That in turn throws a hoped for trip to the San Francisco area in late October into disarray, as well as plans we had to return to Bonaire for a short visit this fall.

In terms of my adjuvant treatment, the current thought is that I have not been on Sylatron long enough for it to necessarily have made a real difference yet, so I will likely be sticking with the Sylatron immunotherapy treatment for the foreseeable future (although probably suspended in the time around my surgery). At present, my Sylatron symptoms are the same as before – minimal appetite and significant fatigue. My white blood cell counts are still not great, so we’ll have to see if I take my next dose on Thursday or not.

I keep hoping that I will have some stability in my life, but every time I think I’m getting there, a new twist arises to completely change things. I am grateful the latest problem is “only” more cancer in my lymph nodes as opposed to cancer in my organs, but I would have been a lot happier if there were no new signs of cancer at all. It’s certainly a bumpy ride on the melanoma train.

I’ll post my next blog entry after my meeting with my surgeon next Tuesday. Maybe I will even add a video blog at that time (I am too emotionally drained right now to do a video blog with this post – sorry).

 

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This entry was posted on Monday, August 1st, 2011 at 16:15 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.

28 Responses

August 1st, 2011 at 16:20
Ann Phelan Says:

Healing Hugs and Hope…you are loved by many and everyone is rallying for you to heal fast..

August 1st, 2011 at 16:21
Jessica Says:

Thinking of you, Jake. In fact, I was thinking of you when I got an invite to an event at Praeger. When you DO make it to the SF Bay Area, I hope we’ll get an opportunity to have a drop (or more) of port together. Hang in there! xo

August 1st, 2011 at 16:33
kelly Says:

Damn buddy…i remain here if ya need me.

August 1st, 2011 at 16:36
Leslie Lindsay Says:

Hang tough, Jake!

August 1st, 2011 at 16:37
Cynde Says:

Jake, well phooey on the lymph nodes, delayed radiation, trips, vacations, etc. I’ve been thinking a lot about you (more than my usual several times a day) lately. Gentle healing and hugorama thoughts and vibes coming your way Poseidon Cancer Warrior!!!!

You have FB email btw :-)

All my love and hugs to you, Linda, Krystana, and Bas….

Cynde

August 1st, 2011 at 16:38
Tish Says:

Healing energy beaming your way.
Tish

August 1st, 2011 at 16:45
Carole Says:

We are praying for you & Linda & the kids and your doctors, as well. Plenty of positive thoughts and vibes being sent your way, Jake!~

August 1st, 2011 at 17:06
Steve Says:

Crap on the news about the lymph nodes. Another surgery sucks, but it is good that they can get rid of those affected nodes.

Be strong,and relax when you can.

-Steve

August 1st, 2011 at 17:37
Ethel Says:

I’ve been following your blog for several weeks, discovered it on my search for info since I was diagnosed with melanoma (right upper leg)
Diagnosis, first operation, sentinel node operation and lymphadenectomy in the right groin: all around the same dates.
Thank you for sharing, both personal and scientifical stuff (and that is a compliment, I’m a biochemist).
I had no metastasis to lymph nodes other than the sentinel, and there only isolated tumour cells were found. No further treatment necessary according to my oncologist surgeon.
Hopefully the surgery and recovery you’re facing won’t be as drastic as the last one and that you can visit Bonaire soon. I feel it’s important to keep on dreaming and planning!
Best wishes from Belgium (Dutch speaking part)

August 1st, 2011 at 17:47
Jake Richter Says:

Thanks Ethel! I am glad to hear that your melanoma seems to be contained! I gather you are not on any adjuvant treatment? I know the protocols in Europe are different than in the U.S. on that.

Take care,

Jake

August 1st, 2011 at 18:10
Bob Gibson Says:

I came across your blog by accident. What a shock! You, Linda and the kids are in our thoughts. I look forward to seeing you and catching up on things when we next meet on the island. Meanwhile, you have our best wishes for successful treatments and a full and quick recovery.

Your Friend,

Bob

August 1st, 2011 at 18:24
Corky and Sy Says:

Hi Jake,
As we all know, cancer sucks! Keep thinking positively, as are we. Hugs and love to the whole family.
Corky and Sy

August 1st, 2011 at 18:33
Shella Says:

Hang in there Jake. And thank you so much for sharing and educating. I know there will be good news soon and would love to see you out here in SF. Take care! Shella

August 1st, 2011 at 18:34
LaDonna Says:

big hugs, Jake! I am relieved by today’s news! You were all in my prayers all day! I love you guys!

see you soon!

August 1st, 2011 at 18:37
Lea Nichols Says:

… No dream is ever lost. If you never cease to try … Slings And Arrows – MOODY BLUES.

August 1st, 2011 at 19:38
Denise & Teddy Says:

OK .. that seals it, even though I hate the word ‘sucks’ (generation thing?), I am ready for the cancer sucks bracelet. It is good to know that results were not the worst, but …. And yes, that really is very good news !

Big hugs to you Jake, and to Linda and kids. Our good vibes and prayers continue to come your way. Again, thanks for keeping us aware.
Love
Denise

August 1st, 2011 at 19:56
Mercy Says:

You have cancer, it doesn’t have YOU! Healing Love to the whole family.

August 2nd, 2011 at 00:24
Cinde & Lauren Says:

Sending our healing vibes & hugs from FL to you ~~~~~~~~~~~~~~~ :)

August 2nd, 2011 at 01:32
Dara Says:

Sending smiles and hugs and warmth and light your way.

August 2nd, 2011 at 09:48
Hannah Says:

Positive thoughts from here!

August 2nd, 2011 at 17:18
Michael R. Says:

I came across this blog by accedent while looking for information on Sylatron. I too have stage III melanoma. It was on my right forearm. It had spread to one of my sentinel nodes which resulted in a second surgery to remove 22 nodes from under my right arm. Thankfully they were clean. I am now 4 weeks into my Sylatron treatment which leaves me weak and with no appetite. I have lost 25 pounds not that I am complaining. I can stand to loose quite a bit more. Just wish I was doing it another way.
Jake, while it is unfornunate that you are going through this I did find some comfort in finding some one who I can relate to while dealing with this journey. Your blog has touched me deeply. My wife and I have you and your family in our prayers and thoughts. Stay strong!!

August 2nd, 2011 at 18:11
Karen Says:

Jake…I’m sorry to hear this latest news. However, the fact that your CT’s are only showing the lymph nodes is very good news. I have you and your family in my thoughts and prayers that your upcoming pet scan will be clear. I too will be going in for a pet scan within the next couple of weeks and I’m keeping a positive mental attitude that it too will be clear. I agree with Michael R., your blog has provided so much to me in a time of great uncertainty. Thank you.

August 2nd, 2011 at 18:48
Jake Richter Says:

Thanks all.

Karen, the purpose of my PET scan will only be to help determine if I need a biopsy on the suspicious lymph nodes in my left groin, or if it can be determined they are likely enough to be cancerous to require removal at the same time that the worrisome lymph nodes in my right groin will be removed. I am facing surgery regardless – it’s just a matter of how much. And the PET scan may help with that determination. I wish you luck with your scan!

Michael, a fellow Melanoma Warrior who is also on Sylatron was told to try adding potassium to his diet to help with the lack of appetite. He has done this in the form of bananas, and says it appears to be helping. I had a banana today myself to see if it helps. Stay the course. It should get better when you drop down to the maintenance dose, or so I’m told.

Jake

August 4th, 2011 at 18:15
Mel Says:

Stay strong! Remember every cell in your body listens to every thought in your head. (If you don’t believe me, just imagine biting into a lemon.)

Also, I ran across an article in a newsletter I subscribe to on low dose naltrexone and the treatment of cancer- website is lowdosenaltrexone.org. Might be something to check out.

Sending love to you, Linda and family.

August 5th, 2011 at 03:55
Vince D Says:

Sorry to hear of this latest development. Makes the general daily problems/issues we all face in life pale in comparison to what you and your family are dealing with.

August 6th, 2011 at 01:12
elaine sculley Says:

jake u are always in my thoughts and prayers. hugs coming to ur family

August 6th, 2011 at 13:08
Wallace Says:

Jake, Sorry to hear about the additional complications. You and your family are in my daily prayers.

August 7th, 2011 at 03:27
Mitch Says:

Yes it’s after 2 am and yes I’m sleepy but I am moved to comment while it is fresh in my heart and mind.

First of all Mel has been my narrator for this apsect of your life and we are sharing our thoughts and emotions around this a bit and I know we will continue to learn and grow from it. I honor you for sharing.

I am convinced that virtually everyone, when learning of someone whom they know has cancer, takes some sort of inventory of their life and likely expose disappointing or inspirational and loving emotions they may not have been aware of or felt before. I am no different. No matter how many times it happens I still go through the process. Now I ask myself what is appropriate to say and what will I trust myself to say. My inspiration is to reach out, be profound but my heart tells me to be humble and supportive. But then there is that intellect and the plethora or information I have been exposed to about relationships, purpose and the balance of nature and I have to dabble in the profound, honest and humble…

My wish is for you and your family to somehow find purpose and acceptance in this firecly unfucking fair challenge you now face. I feel a deep anger that anyone should have to go through this. i also feel great joy that there are people who can find courage and purpose in this dark subject that give light to hope and healing. I am choosing to trust that this chapter in your life is somehow serving your etherial purpose. Much like a star that forms from chaos to give light and life to our planet (and likely others) and then eventually consumes itself only to give itself back to where it came from so that new stars and planets and life can form.

Now I am not suggesting you go supernova or anything (because that would just be messy) but I am suggesting that we can learn from the simplicity of the existence of matter and energy in various forms like the stars, for example. I believe that, we humans like a star have an ethereal purpose but that we also have societal purpose. Your blog appears to be serving one, whether it’s yours or not I don’t know but someone has already thanked you and more will. Thank you! (see I told you so).

Peace!
Mitch