Melanoma Stage 4

Jotto · Regular Joined: 24 Jan 2008 Posts: 48 Location: Biloxi MS

Thank Jane and Jim

Both of you and and Sodapop and everyone is in my prayers and we have a prayer group also paying for all of us.

Its nice to have people to talk with.

Jim

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

Jotto · Regular Joined: 24 Jan 2008 Posts: 48 Location: Biloxi MS

Just got back from MD Anderson, thought I would be there a few days but it turned out that there are no clinical trials for me.

The recommendation was interferon for a year, the first 4 weeks being very intensive and the rest done by myself by injection. The MRI and CT scans all showed no cancer, the only problem is an anurism in my abdomen that is small and needs to be watched. Now I get another doctor for that. I guess my orginal oncologyst was right about the wait and see attitude if you refuse interferon.

I was reading a report that said my spleen was fine. I had it removed when I was about 15, but told it might grow back. I am wondering if it did.

I am trying to see if I can get some support if I decide to go through with the interferon since I really don't have anyone that I can ask to do this. There are two treatment places one in Houston and one in Florida. I would like to ask my rl dad, but they have enough problems with their son and I just can't bring myself to ask that of them. I have never relied on others, and now I don't know what to do. I don't know if I can do 4 weeks by myself, but I guess we might be getting ready to see if I can.

I meet a really nice couple while I was there. She had about the same as me except her SLN came back negative. Almost exactly 5 years for her orginal surgery she comes back positive and is now in chemo. I think I had a big misunderstanding of this. If you have 5 years left, it could increase your survivability by 15%, at 5 years that isn't a good trade off to me. Its less then a year for giving up a year. The year you give up is the first one, that right now I am in great shape, to add 9 months at the end. I know this is a preventive messure with the hope that it will never come back.

We discussed my novel approach to this and she said to keep doing it. Had hoped I would meet Professor Aggarwal, but he was on a trip to another state so that didn't work out.

Its hard to find people that are going through the interferon, and side affects seem to vary with the individual. So now I have to decide on the best course of treatment for myself before 60 days are gone, that is the best window of opportunity for treatment.

Jim

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

Jotto · Regular Joined: 24 Jan 2008 Posts: 48 Location: Biloxi MS

Got a email to call MD Anderson they needed to discuss something with me.

So I called the pager that was in the email for me. Got a Call from the nurse and she said I have some good news for you. You are not stage IIIb you are stage IIb, my sentinal node was negative. You are required to do observation only, and no chemo is required.

So, now that I think about all the pain and depression, saddness, all that stuff that goes along with looking at death in the face, I am pretty pissed off. I didn't need to go through a second surgery. Kinda shakes your faith in doctors.

brainman · Posted: Fri Mar 21, 2008 2:53 am Post subject: Re: Melanoma Stage 4

Yayyyyyyyyy JIM Very Happy

. What great news!!! It is wonderful that it wasn't a stage IIIb. I am not sure but even with a sate IIb you might have needed the surgery. But, anyhow, your prognosis is so much better now Smile

.
_________________
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/

Jotto · Regular Joined: 24 Jan 2008 Posts: 48 Location: Biloxi MS

Thanks Jim

Yes I would have had to have the SNB done, but I wouldn't have been required to lose 9 more nodes when it was negative. If I had went with their judgement I would be in chemo right now if I hadn't wanted to go to MD Anderson.

I am no expert in this, I needed the other people that I am sure make alot more money then I do. Sorry but I have limited insurance and this man is going to pay everything back to them after the first operation. How many times has he made mistakes like this?

Yes this is the greatest news I could have had, starting at stage 4 and then going all the way down to stage 2b.

I am very upset, I would have liked to keep those 9 lymph nodes but I went with the judgement of the people that I looked to for help. I have learned so much during the last 3 months. Everytime I had my son, I would cry because I wasn't going to be there for him. He is the most important person in my life, the greatest part of my whole life. I love him with all my heart.

http://www.mdanderson.org/diseases/melanoma/display.cfm?id=6d8e3837-4167-4767-ac93542145a415b1&method=displayfull

Surgery for Melanoma More Than 1 Millimeter Thick
Melanomas 1 millimeter or more in thickness are considered somewhat more serious than thin melanomas because they are more likely to spread to other areas of the body. For larger melanomas, in addition to a wide local excision, a surgeon will often do a lymph node biopsy to check whether the cancer cells have spread. In a lymph node biopsy, lymph nodes in the area of the cancer are surgically removed to see whether they contain cancer. Your surgeon may opt to do a sentinel lymph node biopsy, in which only the closest lymph node to the tumor is removed to check for cancer. If the lymph node closest to the tumor is cancer free, then the other lymph nodes do not need to be checked or removed.

janie · Regular Joined: 30 Dec 2007 Posts: 11 Location: UK

Hi everyone,
I am 12 weeks post op groin disection, feelin really good, and about to return to work. Had a mole removed 2 weeks ago because it had started to change (just routine) !. And yes youve guessed it I have a second primary malignant melanoma not as thick as the original which was 1.9mm but 1.2mm, so ive now got to go through the whole thing again only on the other leg! scheduled for surgery on 9th June. This thing is relentless!!!!
God bless you all
Janie.

Jotto · Regular Joined: 24 Jan 2008 Posts: 48 Location: Biloxi MS

Janie,

I am so sorry to hear about this. I will continue to pray for you.

I had another biopsy done yesterday, but they think its not melanoma, will find out soon. This one was on the small of my back.

I had them check my son also, he will now be scheduled for surgery this summer. I found a spot on his testicals, irrergular. Again they think its nothing but still needs to be removed. Since he is so young, he doesn't want them to do anything. Because of mine I do inspections of his body every other week and take full body pictures of them.

I am just trying to recover from pneumonia, its been hard on my body. I am more prone to this because of my spleen being removed.
_________________
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/

janie · Regular Joined: 30 Dec 2007 Posts: 11 Location: UK

Thanks Jim, I hope that ur mole is normal, and i sincerely hope that you are feeling better after pneumonia.(you poor thing).
I have four kids and since my diagnosis I am absolutely paranoid, and I too check them all the time.
I pray that all of our children will escape this thing.
My thoughts and prayers are with you and your family.
Let me know how yourresults go.
Best wishes
Janie

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