johnnydeep: Short and sweet

Tuesday, March 17, 2009

Short and sweet

I'm having a hell of a time with fatigue, other than that I think I am doing pretty well. The steroids are ramped up and I as bigger than ever, though strangely my weight has gone up only3 to 5 lbs...swelling I'm sure. The symptoms have gotten a bit worse in my right hand, but not much. I do pretty normal walking around in the open but I have to have help when I am in a store or I bang into shit constantly. So I try to take a cane with me now. Hopefully I won't need it for very long! I should start getting some energy back in the next couple of weeks.
Hell with the dose of radiation they gave me I probably have parts inside glowing

2 comments:

Stevens FamilyMar 17, 2009 09:44 PM
Damn, that was some crazy stuff with the head bolts!! Glad to see everything went well. I'm sure the follow on fatigue goes with the territory.

We'll be seeing you in just a couple weeks (March 29 & 30).
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BazMar 27, 2009 04:29 AM
Wow, your positive attitude during this is pretty inspirational. Nice job.
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updated 3.19.2009 or in a nutshell from the beginning

This is my journey through a diagnosis of metastatic melonoma and the adjuvent treatment for it.
In February 2007, I had a mole removed from my right shoulder blade that came back as melanoma, I then had a wide area excision done which came back with a clear patholgy report wich should have meant I was cancer free. A sentinal lymph node biopsy was not done as the mole was borderline depth and the path report showed clear borders...I.E. they got it all!
Fast forward 6 months and after some severe pain and swelling under my right arm, I had all the lymph nodes removed under my right arm on Aug 21st. The pathology report came back that 9 of 15 nodes were fully involved with metastatic melanoma as was the fatty tissue surounding the nodes. For those that are keeping track that puts me at level 3c without any distant metastisis (very lucky it was all still local).
At that point I just did everything possible to get rid of this "Beast!"
Unfortunatly it seems there are only about three things they could do for me as far as treatment. I was and continue to be seen at the Seattle Cancer Care Alliance in Seattle and my treatment was 4 weeks of high dose interferon2b (every weekday for all of September 2007), then I had radiation in the area that my lymph nodes were removed 2x a week for 5 treatments during October 2007. Then I did bio-chemotherapy which was 9 weeks, three cycles of one week in the hospital and the next two to recover at home. Bio-Chemotherapy for melanoma uses several drugs which are very toxic-
Interleukin (IL-2)
DTIC
Vinblastine
Cisplatin
Interferon Alpha 2b
G-CSF
Basically a bunch of stuff you don't ever want to put in your body! Therefore I had to be monitored, then I needed the 2 weeks to rebuild before the next dose! Nasty stuff. Involved blood tranfusions, being unconcious for a week at a time and throwing up while passed out! (not eating for a week at a time while vomiting...I had great abs...)
After treatment I went six months and its back and into my liver and lungs as well as coming back in my right armpit and right axilla lymph nodes.
I was fortunate that I was able to get into a trial for ipilumimab (MDX-010) on a compassionate use basis.
I received 2 doses of the "ipi" starting in August of 2008, and by September had major side effects. I guess I am fortunate that it is colitis and not liver side effects. The drug load to combat the colitis has been pretty severe as well as the Flexible - Sigmoidoscopies...true fun!!! I have been on 80mg of prednisone a day from Sept 1st, and am on another steriod, a couple of immunosuppressants and several antibiotics to keep me from getting sick from the immunosuppresive stuff. I am just starting to taper down on some of the drugs, and I have had my first round of scans. This is immunotherepy, and the time frame is still kind of short. New scans in the middle of December! I am keeping my fingers crossed as my next real alternative is high dose IL-2. And I really don't want to do that!
Its Now the Middle of March and I just got done with Gamma Knife Brain Surgery for a couple of brain lesions we found after I started having some mild stroke like symptoms. So far the rest of my tomurs are behaving and staying stable. Its hard to know wether this is th beginning of the end, or just another bump in a long bumpy road!
I started this blog as a way to keep my friends and family informed about my treatment and it has been all that plus it has turned into a mild form of therapy for me.
I also want it to be a resource for anyone who has to deal with this monster.
There are no good answers and with melanoma there are no rules...what few rules it seems to play by, it can break when it wants, Thats the hand I have been delt and by god thats the hand I am going to play.
Cancer is MY BITCH!

johnnydeep

Tuesday, March 17, 2009

Short and sweet

2 comments:

Melanoma related battles. Clinical AND personal!

Stuff you will find in my Favorites folder

Blog Archive

Contributors

updated 3.19.2009 or in a nutshell from the beginning

johnnydeep

Tuesday, March 17, 2009

Short and sweet

2 comments:

Melanoma related battles. Clinical AND personal!

Stuff you will find in my Favorites folder

Blog Archive

Subscribe To johnnydeep

Contributors

updated 3.19.2009 or in a nutshell from the beginning