My Story

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Names Tony, this is my Melanoma story.

May 2007 diagnosed with stage II melanoma on the bottom of my left foot.

Wide excision and sentinal node biopsy done. Five lympnodes removed from my groin, none tested positive.

Prescribed one year course of Intron A, high dose 5 x a week for first month, lower dose 3 x week for 11 months.

January 2008 CT scan finds lumps in groin.

Fine needle biopsy of lumps is positive.

February 2008 Lymph node dissection, seven removed from groin, two positive.

March 2008 Scheduled for radiation therapy.

March 2008 PET scan finds more lumps. Radiation therapy cancelled.

Which leads me to April. Doctor is presenting my case to some board. Not sure what's going to happen next.

Do know that I have a prescription for Leukine GM CSF to pick up this week.

This stuff is blowing my mind. I've gone through more discomfort from the surgeries and therapies than I ever had with the "sore" on my foot.

Obviously the interferon or Intron A did not work. In fact, the area in which I injected it was only 2 or 3 inches from the second set of tumors!!!

It's starting to seem to me that the more we mess with it the worse it's getting.

Trying to keep a positive attitude and Keep on Keeping On, but it's getting harder.

I use to have so many dreams, now I have only one!!!!!

Just can't believe I got skin cancer on the bottom of my foot!!!!

Always thought I'd go out in a blaze of glory with my boots on, like John Wayne or something, instead I'm afraid I'll be going out with a whimper.

Don't get me wrong, I'm not giving up. It's just every time I start to feel better after a surgery or treatment, they kick me back down.

I'm done whining, thanks for listening.

Tony

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 79

Hi Tony,

I am so sorry to hear all you are going through. I do not know about treatments for your type of cancer, but never give up on your dreams. When i was diagnosed with cancer in 2005, everything hit me at once. I had no money, no insurance, spinal fluid leaks delayed me getting radiation. I know it was God who got me through it all because at first i didn't want to fight it. My sister also encouraged me. Find those people who will encourage you Tony. Sometimes its your darkest and hardest days before you come out something victoriously.

And no, you are not whining. Anyone who has gone through the dread of being diagnosed with cancer knows exactly how you feel. Many people beat this horrible disease! And like you, for most people the treatments can be harder to deal with than the symptoms. Hopefully someone can answer you better on this type of cancer and their treatment protocol. You are in my prayers, and keep us posted on how your treatments progress.

Rhonda

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Hey Rhonda

Thanks for the reply.

I've had sooooo much support from my family. So I've done my best to keep a "stiff upper lip" and positive attitude around them.

I guess my posting here is just a chance to vent without anyone close to me knowing.

Tony

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 79

Yeah, that is perfectly understandable. I vented plenty of times myself on this forum. I had to stand tough for my family, my twin sister fell apart so I had to put on a performance when I found out about my diagnosis. I always joke with the hospital staff "take care of my family now while I am in the hospital". Its hard to "act cool", but that is what so great about this forum, you don't have to act. You're among people who have gone down this very hard road, and people really do care on this forum. Hopefully, someone will post here who has gone through a similar diagnosis--you can learn so much from how other people receive their treatments and what options are available.

Take Care,

Very Happy

Rhonda

brainman · Posted: Tue Apr 01, 2008 6:40 pm Post subject: Re: My Story

Tony, I am so sorry that you are having such a struggle with your cancer. I do hope that the tumor board comes back with some good options for you.

Most hospitals that have an emphasis on treating cancer patients have weekly or sometimes daily tumor conferences. In those conferences your oncologist will present your case to an interdisciplinary group of staff members. Then the pathologist will project slides of the biopsy and talk about the different cells that are present. The pathologist will end his presentation with his diagnosis. Then the staff will talk about possible options. Ultimately, it will be your doctor's and your decision as to what to do next. I had the privilege to be a part of a tumor conference for more than 10 years. I even presented a case one time Very Happy

.

Tony, you are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Thanks for the input Jim.

Sometimes the waiting is the hardest part.

I WILL kick this melanoma in the arse!!!!!!!!!!!!!

I WILL survive this and anything else that comes down the pike.

I WILL always help anyone who needs it. I still consider myself to be one of the "lucky" ones Smile

Tony

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Well I picked up my prescription for Leukine.

14 little bottles with no liquid in them. Looks to be a white powder caked to the bottom. Instructions say to inject 1ml of sterile water and swirl it around to mix it up.

I go in this friday to find out where my cancer has popped up again.
They said they would show me how to administer the shots.
Two weeks on two weeks off. That shouldn't be too bad?

Anyone on here had the Leukine treatment?

Tony

brainman · Posted: Wed Apr 02, 2008 5:45 pm Post subject: Re: My Story

My father had ALL but all of his treatments were done as an out patient at the local hospital.

Where are you supposed to get sterile water? Shocked

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Good question LOL

When my first sentinal node biopsy got infected after the surgery, they sent me home with some water. I hope they let me know friday.

I had my first month of Intron A given to me at the hospital. The rest of the year I just gave myself shots at home.

Speaking of my first SNB, after it got infected I spent 3 days in the hospital on IV antibiotics. They didn't put a drain in on the first one.
I had to take a 10" long Q-tip and pack my wound with ribbon gauze.
You haven't lived until you take a loooong Q-tip and push it into a little hole in your groin until it disappears!!!!

At least it didn't hurt Very Happy

chas036 · Posted: Thu Apr 03, 2008 1:35 pm Post subject: Re: My Story

This is a dumb question, but how do you get melanoma on the bottom of your foot. I thought meanoma was sun related cancer caused from excess exposure to the sun over a number of years.
_________________
Biospy 4/2007 - 2/12 <%5 Cancer Gleason 6
RP 9/25/2007 Uni Rochester, NY
Gleason 6, Negative Margins

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Wish I knew.

I know I'm not the only one. Read through older posts, rare but not rare enough.

It's called acral lentigous melanoma.

They excised almost the complete "ball" of my left foot and up on to the 3 middle toes. Left it open, no skin graft. Amazingly enough, it all grew back.

What I really would like to know is why my sentinal node biopsy came back completely negative yet a few months later 2 lymph nodes in my groin tested positive after a lymph node dissection????????

shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 10 Location: New York

Hey Tony.

Just wanted to say good luck with the Leukine treatment. Hopefully that will kick the cancer into touch once and for all.

Sorry to hear that the sentinel lymph node biopsy didn't lead them to detect the positive nodes in your groin. The whole thing does seem to be a real rollercoaster.

Stay strong,

Euan

Jotto · Regular Joined: 24 Jan 2008 Posts: 40 Location: Biloxi MS

It seems to be a spot where dark skinned people get melanoma. They say over exposer contributes to the cancer, but its not a proven fact that the sun is the cause of this cancer.

Tony,

I am praying for you. I can't say anything about the treatment since I have never had any. I am thinking about it, but still haven't made a decision since I went from stage 4 all the way back to stage 2, which doesn't require chemo.

We are here for you to talk with. You have already been very strong by going through the chemo, which scared the hell out of me. I really don't know what to say since I haven't been where you are.

I am here for you. As I am sure everyone else is also.
_________________
Jim

Keep the faith, we all have too much to live for.

My journey with melanoma: http://www.cancerforums.net/viewtopic.php?t=8547

My Blog: http://james.healthblogs.org/

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Hey Shuggy glad to hear you got the biopsy over with. For you and your family I'm sure hoping this turns out to be a really bad dream. I've got a cold one in the frig I'm saving to celebrate when your test comes back negative.

Hey Jotto I'm super glad your at stage 2 instead of 4. I know when I went from stage 2 to stage 3c it was a blow to me mentally.

One thing I know for sure, after I beat this cancer there is going to be no living with me. If I can do this, I'm going to be one confident individual!!!

Thanks guys, it really does help to talk about this Very Happy

tonester · Regular Joined: 03 Mar 2008 Posts: 22

Well just got back from my Oncologist appointment.

This time it's moved up from my groin to the lymph nodes in the pelvic region. So have another surgery planned for the 21st of this month.

Radiation therapy and Leukine therapy have been postponed until after the surgery.

I'm just glad it's still in my lymphatic system and hasn't spread to my brain, lungs, or liver. Very Happy

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