Wednesday, January 1, 2020

Background

I've taken the time to write this because I was diagnosed with a really rare form of cancer in March '08 and there is very little information about it posted anywhere. Many doctor's haven't even heard of it. This is written specifically for anyone else out there that has it and is looking for some type of reference. Although this is petty much a bummer - it hasn't been all that bad. All in all, if you are going to get cancer, I think most other types are far worse.

I couldn't figure out how to make the photos go in the correct order so you will need to start at the bottom if you want to start at the beginning. The post directly below is the most recent.

14 comments:

Patrick said...

Jimmy not sure if you are still checking your blog but email me if you can just went thru this with my girl. Hope all is well.
Patrick patrden@cdw.com

Sarah said...

Hey !
I have just gone through this, though the tumour was under my left clavicle. Hope that you are still cancer free !!

Leah said...

Hi Jimmy, thanks for sharing your experience. I just went through this. My ordeal started in February 2010. I was treated at the Mayo Clinic in Jacksonville, FL and seen by their sarcoma specialist and surgery team (vascular surgeon, plastic surgeon, etc.). My tumor was on my right clavicle area and I too had to have wide excision surgery along with skin grafts and "flaps" where I guess they had to move muscle to cover the clavicle bone so the skin graft would stick. At any rate, now I am wearing my butt on my chest, ha! Going back for another set of scans in early March and am worried as the skin graft seems to be several shades of red and odd-looking in spots, but that could be from the area having to stretch from activity. Guess I am just reaching out because I'm nervous. I wish you the best in your surgeries and recovery.

Thimee said...

Neat blog! I have DFSP in almost the same location on my scalp, got the diagnosis after my first surgery in Dallas in 2006. Wasted a few years going to MD Anderson (avoid them for rare cancers, they are a processing facility and you will die). Did my own research and found a local oncologist to treat me. Have been on 800mg Gleevec for close to 4 years now - have similar side effects (no energy, wierd rashes etc) but I keep fairly active so I think this helps. Recurrance has shrunk to about 20% of the size it was in 2008 - so hopefully no "butt head" for me :)

Thimee said...

Here is another patient account: http://www.associatedcontent.com/article/773223/my_experience_with_dermatofibrosarcoma.html

Thimee said...

Also, there is a great thread over at sarcomaalliance.com, discussion board, rare sarcoma meet and greet.

jimmysinger said...

Re:Thimee

How big is the tumor on your scalp? If its only 20% the original size, I can't imagine why you wouldn't just have a MOHS surgeon simply remove it instead of staying on the Gleevec long term. I've been off the Gleevec for over a year now and still don't feel back to normal. I think I'd remove it unless it was on my face or was going to take off my ear or something.

ConnieM said...

I noticed the year in your date. 2020. I'm really interested in time travel, I think you really have a typo. LOL What year, really??

thanks

Conniem

David Haas said...

Hello,
I have a question about your blog. Please email me!
Thanks,
David

PippiLongstocking said...
This comment has been removed by the author.
PippiLongstocking said...

If this blog is still followed, please make contact with me. dfspsupport@gmail.com
we have a group with over 800 members and have just had a grant approved for a study into dfsp. If you'd like to be involved, please do get in touch!
Pip... 5 x dfsp survivor - complete removal of forehead. Reconstruction August 2015.
(posted July 2015) x

PippiLongstocking said...

If this blog is still followed, please make contact with me. dfspsupport@gmail.com
we have a group with over 800 members and have just had a grant approved for a study into dfsp. If you'd like to be involved, please do get in touch!
Pip... 5 x dfsp survivor - complete removal of forehead. Reconstruction August 2015.
(posted July 2015) x

PippiLongstocking said...

If this blog is still followed, please make contact with me. dfspsupport@gmail.com
we have a group with over 800 members and have just had a grant approved for a study into dfsp. If you'd like to be involved, please do get in touch!
Pip... 5 x dfsp survivor - complete removal of forehead. Reconstruction August 2015.
(posted July 2015) x

PippiLongstocking said...

If this blog is still followed, please make contact with me. dfspsupport@gmail.com
we have a group with over 800 members and have just had a grant approved for a study into dfsp. If you'd like to be involved, please do get in touch!
Pip... 5 x dfsp survivor - complete removal of forehead. Unswerving reconstruction August 2015.
posted July 22nd 2015) x