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Ladypepper
04-26-2006, 06:40 PM
It is me again... I had the malignant melanoma on the bottom of my foot. I finally had the surgery to remove it April 12th along with a sentinel node biopsy...
I was originally told that I was at a Clarks level IV with a 2.7mm Breslow depth. Since the surgery, I have been "promoted" (LOL) to a Clarks level V with a 3.5mm Breslow depth.
I also need to go and have another surgery. It seems that they didn't get it all and they will have to go in and do a wider excision. :( Which is more than likely going to require skin grafts.
I am wondering though if the MM had grown that quickly or if it was always that depth and just not tested in the right spot. ?? Oh well, here I go again. Oh yea, the surgeon also said that chemo and radiation doesn't work with melanoma. Is that true?
Thanks for listening.

Ga Lady
04-26-2006, 07:48 PM
How did they biopsy it from the beginning? Did they do a punch? If so then that should of set the entire depth. If they done a "shave" then you wont know the true depth since it didnt have clear margins. The best thing that is going for Melanoma Survivors now that I hear is Interferon. Has helped many many people. Just remember keep the faith! I am sorry you are having to go through all this. Keep us posted through your progress. God Bless!

Ladypepper
04-27-2006, 12:29 AM
Hi Ga Lady ~ Yes they did a punch biopsy in two spots on it. And it was told to me it was 2.7mm from that biopsy. But the biopsy was done the end of January and I didn't have the surgery till the 12th of April... so I was concerned that maybe it had grown more in the meantime since it was now 3.5mm.
I think I may have to wait to talk to the oncologist to get the details because he is the surgeon & kept telling me that there was no staging in melanoma... it was a Clarks level V...

Danialla
05-11-2006, 06:23 PM
I cannot stress enough the need to get into a clinical trial for the treatment of melanoma, especially with your clark and breslow level.

Our you close to a large teaching hospital? Please research trials on the NIH site and get yourself with a good oncologist.

Keep us posted........and take care!!!

Ladypepper
05-13-2006, 11:02 PM
I have heard people talking about clinical trials but didn't think it would be something for me. In reality my surgeon isn't too concerned. I called them again yesterday to find out if the surgery had been scheduled and they said, Nope, call back Wednesday to see if you are scheduled for the next week! :\

I am pretty frustrated cause now it is a month later and I was told to that the next surgery was going to be done in a couple weeks... I know they don't care and when I ask about the time passing, they act like I am being paranod. Maybe I am... I don't know.

About the clinical trials, are they covered by most insurance? Cause I have state insurance right now and they don't like to pay for anything. LOL

Ladypepper
05-15-2006, 11:22 PM
Hi GaLady,
Interferon, is that like a chemotherapy? I have been asked by several people if I will be doing any chemo and I just say that I don't know because I haven't been told anything yet. The only thing that my surgeon said when I went for my two week ck after surgery was that radiation and chemo don't work well on Melanoma.
I think maybe I should look for another doctor...

Ga Lady
05-16-2006, 07:34 PM
Pepper, I dont understand why they are putting your surgery off. For one thing, Melanoma is a serious thing! And your dr's know that too! This is almost ridiculous. I mean, I KNOW dr's are "busy" but melanoma comes first above all the other skin cancer surgeries! Pepper, go to that other "place" and ask advice on this. I am really erk'ed at your dr's and the way they are dealing with this, and I dont even know you! You aren't being paranoid. No Ma'm! You have every right to DEMAND proper treatment REGARDLESS of insurance. As for the clinical trials, I am not aware of how these work but I know "others" who do know....Please PLEASE get ahold of a facility that will take you ASAP! I am sure if call a Specialist in your area or surrounding area they would look at the seriousness of this and have you in surgery faster than you could catch your breath! What area are you in ? State? I am sure there are others who could tell you where and who...well where but not the who....

I am really getting worried about them putting this off....Please do something...dont put confidence into man. Put your armour on girl! And TELL them what you are going to do...this is your life they are "working around" with! And it's your right to have this "already' done YESTERDAY! Let us know what happens! I so wish I was near your area, or actually I wish you were near me, I could definately get you the help you most definately need! Lots of love and Prayers going your way! God Bless!

Ga Lady
05-16-2006, 07:42 PM
To the best of my knowledge, it is a type of 'chemo' yes. I am not really famaliar with it due to the fact I haven't dealt with it myself but "others" have .....and could tell you a whole lot. The main that concerns me is....the timely matter that your dr's are taking in this. Was any of your nodes positive? And ....actually how deep was your melanoma? I know it was your foot...on the bottomm right? Or the side or top? You've probably already put all this on here and I am "fogged"....

Interferon has a good reputation of putting melanoma into a remission. It works wonders with some. And differently for others. If it's in the nodes, I would say go for it all the way! If it's in an organ, first, I would ask if it could be surgically removed FIRST, then the Interferon. Some people have actually turned down Interferon and actually went on into remission through good health habits and diet....But remember we are talking about the "C" word. It's so unpredictable! It's actually the most hated word in my vocabulary but a word I use to let people know that Melanoma is cancer. And Yes, Find another Dr! My love and prayers are with you and yours!

Ladypepper
05-16-2006, 11:03 PM
Hi GaLady! Well to answer your questions first... It is on the bottom of my foot, 3.5mm, Level V. When I had the nodes done, he said they were clear.
The good news is that they did finally schedule my surgery for Friday. :) Not that I am glad to be having this surgery, but at least it will be done and hopefully over with.
I really appreciate your replies. I like the "other" one too, but I get a little confused with the threading... lol It doesn't take much to confuse me lately tho. LoL

Ladypepper
05-16-2006, 11:04 PM
Hi GaLady! Well to answer your questions first... It is on the bottom of my foot, 3.5mm, Level V. When I had the nodes done, he said they were clear.
The good news is that they did finally schedule my surgery for Friday. :) Not that I am glad to be having this surgery, but at least it will be done and hopefully over with.
I really appreciate your replies. I like the "other" one too, but I get a little confused with the threading... lol It doesn't take much to confuse me lately tho. LoL

Belle2003
05-20-2006, 12:02 AM
I always thought that clinical trial were free. That you are their guinea pig and the medicine, tests, exams are all free. The trouble with clinical trials is they have two types of medications. The real medication and the placebo. So you do not know if you are getting the real medication or the placebo (sugar pills). So if you do join a clinical trial make sure that they have no placebo medication.

I am sure that if you google melanoma clinical trials something will come up.

Ga Lady
05-21-2006, 04:40 PM
Hey Pepper! I have been "other places" and lordy me! I am so glad that you are doing better and with a negative node biopsy that is wonderful! You're depth is pretty deep I will agree but just keep up the Positive attitude girl! You will be fine! I just know it!

Ga Lady
05-21-2006, 04:42 PM
Belle, I think you're right. They are suppose to be free. Hmmm...

Belle, I am glad you're here. I wanted to know what ever happened to Tai Chi or something like that who used to post here on her skin cancer? Have you seen or heard anything of her anywhere on here?

Danialla
05-21-2006, 06:47 PM
Clinical trials "should" be free......although you probably will need to cover any travel expenses to the site of the trials.

12 years ago, when my brother was part of his 1st clinical trial, he needed to pay for all the bloodwork, cost of making the vaccine and the travel costs to Kansas City from Ohio. When we contacted the Cancer Society to request financial help for him they said they couldn't do that but to look them up when he needed Hospice:(. Needless to say I do not give to the cancer society........but I do give to our local hospice.

Anyway, that was the only time he was charged up front. The other trials covered expenses, although we had to fight with his insurance company for other costs incurred in his "experimental" treatment.........Of course there were/are no treatments out there that are considered "standard first line defense" other than surgery.

My advice is research and get with a clinical trial ASAP. Lot's of times these trials make the conditions so tight that you can miss being qualified very easily. Also, clinical trials that deal with melanoma do not have placebo groups.

Take care and good luck.

Belle2003
05-21-2006, 11:46 PM
Ga Lady,

I do not know what happened to Tai Chi. I have found that many times you take a sincere interest in someone's well being on the boards and then they never come back to the boards and you are left wondering if they are okay. I just tell myself that they got better and do not want to not think about their illness anymore :)

Ga Lady
05-24-2006, 09:11 PM
Thanks Belle. I seen she used to post often when I first came here. And had some major surgeries and .......well.......I guess I got worried...But I like the way you look at it best. :)