MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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alexandra's picture
Replies 7
Last reply 7/26/2011 - 9:30am

Hi -

I got my pathology report today. Here's what it says:

Micro examination: This excisional biopsy measured 9 x 6 x 1 mm. and is cut in three sections and submitted in toto. In parts of the lesion there are typical features of dysplastic nevus with lentigunous proliferation of nests and single atypical pigmented melanocytes along the dermo-epidermal junction with fibroplasias in the dermal papillae. However, there are areas in lesion of epithelioid pigmented melanocytes in the epidermis. There is some upward migration of single cells. As well as there are similar nests of atypical melanocytes infiltrating the papillary dermis with a dense infiltrate of lymphocytes and melanophages. The morphology is compatible with a malignant melanoma, level 2 invasion developing in a dysplastic nevus. The vertical height measurement is 0.47mm. and there is no ulceration. The lesion is completely excited in the plane of section examined. The mitotic index is two mitoses per 1mm. squared.

Diagnosis: Malignant melanoma developing in a dysplastic nevus, level 2 invasion, vertical height 0.47mm.

I honestly don't know what it says. I would also like to know if anyone recommends SNB. The doctor said I don't need one, but I want to make sure that I make the right decision.

Thank you!

Alexandra

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guyrossi's picture
Replies 14
Last reply 7/25/2011 - 8:14pm

Yesterday I found out that the mole on my back was a malignant melanoma.  I knew nothing about this disease until I spent the last 5 hours reading and researching.  Based on the pathology report the doctor told me that it is very unlikely that the cancer has spread.  However,  he wants me to come back on July 11th to take some more flesh from the orginal site of the mole. 

Does this sound like the prudent thing to do? Or should more be done?  I did mention to him that I have been achey and tired and have notices some soreness under my arms and inside my legs.  After what I have read today it sound like this could be more serious. 

Any feedback would be appreciated.

"I can do all things through Christ who Strengthens me."

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mombase's picture
Replies 15
Last reply 7/25/2011 - 7:01pm
Replies by: NYKaren, mombase, Jim M., lhaley, MaryD, Anonymous, Cooper, MichaelFL, jmmm

Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma.  I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative.  I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first. Since I had previously had a melanoma, she was very concerned. She ordered a full body CT and sent me to the neurosurgeon to set up a surgery. (This is all slightly complicated by the fact that my treatment is through the Sacramento VA. My surgery had to be done at the David Grant Hospital at Travis AFB). Just as I was about to go under, the surgeon received the results from the full body scan which showed several tumors in my lungs. They were thinking about stopping the surgery and doing gamma knife on my brain and doing biopsy on my lungs, but they decided to go ahead and remove the brain tumor anyway. It was definitely melanoma. The oncologist has said that the lung tumors are not resectable because of the number and locations.

Basically, the oncologist did not give me a lot of hope due to the brain tumor prognosis. I came in to meet with her for the first time with lots of questions but got very few answers. I guess the most discouraging part of the research is not knowing why some people respond and others don't. Nonetheless, I am ready to fight the good fight as I am a single mom to a wonderful 17-year-old daughter, and I have lots of things to do!!

The first thing that is going to happen in a couple of weeks is  whole brain radiation at Daivd Grant Hospital. Then I need to let my oncologist know a couple of weeks after that what treatment option I have decided on. IL-2 seems to have better odds than some of the others. Unfortunately, I would have to go to the Palo Alto VA Hospital where there is a staff dedicated to dealing with the side effects. I would have no family there and my understanding is that the side effects are treacherous (any personal experiences would be GREATLY appreciated).

Yervoy (ipi) also seems like a viable option, and I can be treated in Sacramento. Does anyone have any personal experiences, good or bad, with this drug?

I feel like everything is closing in on me, even though I am pretty sure in reality if one treatment does not work, another can be tried.

Any input would be so greatly appreciated!!

Sincerely

Cristy

Getter done!

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TracyLee's picture
Replies 2
Last reply 7/25/2011 - 6:49pm
Replies by: StevenK, shellebrownies

Hi y'all,

I will be going to U of Penn in Philly to join the BRAF+ extended access clinical trial.

Anyone else currently in that trial?

I'm hoping to see Dr. Schuchter once, get the meds, and then mainly be followed here in Delaware, as I do with Dr. Sharfman at Hopkins.
 

I really don't want to haul back and forth to Philly more than I have to, I'm almost out of time off at work. I am blessed to have both short and long term disability offered at work, but hate to go that route.

What should I expect at my first appointment for this trial? Long visit, short visit?

And, finally, I didn't mesh well with Dr. Schuchter last consult. However, I'm deferring to Dr. Sharfman's opinion that she is the one to see for this trial. I'll suck it up, I guess!

Thanks as always to the posse! Final ipi on Thursday, then BRAF as long as it will work. I see IL2 in my future, hopefully, wayyyyyyy down the road.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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mombase's picture
Replies 3
Last reply 7/25/2011 - 11:16am
Replies by: NancyGM, nickmac56, ed_CT

(This is a re-post with a more descriptive title)

Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma.  I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative.  I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first. Since I had previously had a melanoma, she was very concerned. She ordered a full body CT and sent me to the neurosurgeon to set up a surgery. (This is all slightly complicated by the fact that my treatment is through the Sacramento VA. My surgery had to be done at the David Grant Hospital at Travis AFB). Just as I was about to go under, the surgeon received the results from the full body scan which showed several tumors in my lungs. They were thinking about stopping the surgery and doing gamma knife on my brain and doing biopsy on my lungs, but they decided to go ahead and remove the brain tumor anyway. It was definitely melanoma. The oncologist has said that the lung tumors are not resectable because of the number and locations.

Basically, the oncologist did not give me a lot of hope due to the brain tumor prognosis. I came in to meet with her for the first time with lots of questions but got very few answers. I guess the most discouraging part of the research is not knowing why some people respond and others don't. Nonetheless, I am ready to fight the good fight as I am a single mom to a wonderful 17-year-old daughter, and I have lots of things to do!!

The first thing that is going to happen in a couple of weeks is  whole brain radiation at Daivd Grant Hospital. Then I need to let my oncologist know a couple of weeks after that what treatment option I have decided on. IL-2 seems to have better odds than some of the others. Unfortunately, I would have to go to the Palo Alto VA Hospital where there is a staff dedicated to dealing with the side effects. I would have no family there and my understanding is that the side effects are treacherous (any personal experiences would be GREATLY appreciated).

Yervoy (ipi) also seems like a viable option, and I can be treated in Sacramento. Does anyone have any personal experiences, good or bad, with this drug?

I feel like everything is closing in on me, even though I am pretty sure in reality if one treatment does not work, another can be tried.

Any input would be so greatly appreciated!!

Getter done!

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lhaley's picture
Replies 5
Last reply 7/25/2011 - 9:08am

Great news today!!  The lump that stopped the radiation and caused me much alarm since it was just 4 weeks after surgery was just fatty tissue!  There were actually 3 nodules so I was quite concerned. Just to show that lumps do not always = bad news!!!  That now makes me 6 weeks NED!

I start back with my radiation tomorrow and have some issues.  After just 4 days I had been blistering along the scar area on my arm. I'm doing radiation because the tumor was along the ulnar nerve and the surgeon was not able to get a margin on that side.  When I had my original consult in Charlotte they told me that side effects would be minimal. A low dosage would be used to not damage the nerve. Most I should experience was a sunburn in the area. I am being treated locally and the Doctors originally all talked. 

I know that the local tech at least lied to me. They put on a bolus and when I asked what it was I was told that it was to protect the skin.  I had dinner the other night with Debbie from Va (she was in the area for a music camp smiley). When I told her about the blisters she asked me about the bolus. I had no idea!!  When I looked it up on the internet I realized that it is used to give the surface skin the same effect as the deep tissue. The info I got basically guaranteed blistering! I'm worried because I am allergic to most antibiotics including topical ones. Infection always puts me at a high risk because of my intense allergies. 

When I spoke to my Oncologist today he could not advise. They told me to ask lots of questions tomorrow and to voice my concerns. They are starting back so quickly that I don't have time to call the radiologist that I originally consulted with. I will call him in the morning but doubt I will get a callback before I go. I realize that changes can be made for the next day.

I know this was long and I apologize. My question for others who have had radiation on a scar line. Did they use a bolus (looks like a gel pack), should it be sterilized between patients, and what side effects did you get from it? I have 20 more treatments to go.

I'm happy with my news I got today but am concerned about radiation issues,

Linda

Stage IV since 06  NED for 6 weeks!

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Lisa13's picture
Replies 9
Last reply 7/25/2011 - 7:14am

I'm 2 days away from knowing how the dacarbazine is managing the small nodules in my lungs.  I was doing quite well until this morning, and then was plagued with major anxiety. Chest tightness, hard to breathe - you know, symptoms that might make you think bad things, but yesterday I had none of these symptoms. I'm very irritable and it's hard for me to focus and my heart is racing. This is my first post scan after first line treatment, so I've never felt this type of fear before. I keep trying to tell myself that the melanoma has been growing slowly from April to June, so it's either continuing to grow slow, is stable or is starting to disappear.   Can you guess which one I pray for????  I wasn't going to come on here until I knew my results, but my anxiety is getting the best of me.

I've also been thinking alot about these spots - most under 6mm, all of which havn't been biopsied to confirm melanoma. Even though most "tiny nodules" appear a bit bigger since the last scan in April, for all I know, a few of these may not have been melanoma (or at least this is what I tell myself).  As much as I want to know on Tuesday, I'm scared to know and I doubt this journey gets any easier.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Gene_S's picture
Replies 7
Last reply 7/24/2011 - 10:46pm
Replies by: nicoli, Gene_S, bcl, DonW, washoegal, Anonymous

Hi, It seems (to me) every time someone posts a question about

alternative treatments there is usually a suggestion to go to the

"Quackwatch" web site. Here is a link about the creditability of

Quackwatch that may be of interest to readers especially those

who are interested in using unconventional treatments.  See:

 
Best Wishes,
 
Gene
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/24/2011 - 9:52pm
Replies by: Gene_S, Anonymous, dian in spokane, teach, lhaley

Hi

My doctor is willing to have a Vitamin D test done so that I will know if I am  Vit D deficient.

My blood tests are done at Quest because the blood tests are cheaper.

Can someone tell be the name of the blood test for testing Vitamin D . Quest had 3 test:

1.Vitamin D 25 test

2. Vitamin D125 test

3. VitaminD. 25 & 125  combotest

 

Any info you can give me about  the Vitamin D test, you have had would be very helpful.

 

Thanks,

william

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MariaH's picture
Replies 12
Last reply 7/24/2011 - 9:47pm

Dave and I have been in contact with NIH regarding their clinical trial with TIL, chemo, irradiation, and IL-2.  They are asking that once we get the results of Dave's pretesting for IL-2 at Roswell, we forward them to them.  They said they can remove part of Dave's tumor prior to doing IL-2 treatment at Roswell and start growing the TIL cells if IL-2 fails.  Since the IL-2 protocol takes up to 8 weeks, this to me sounded like a good back up plan.  However, now I am wondering - should Dave do the IL-2 first and wait to see if it works or should he look into going to NIH and start his treatment there (IF he is accepted by them)?

I guess having options is better than having none, but it really is so difficult to decide.  Any thoughts/opinions would be greatly appreciated.

 

Maria & Dave

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llw75751's picture
Replies 2
Last reply 7/24/2011 - 8:12pm
Replies by: llw75751, RMcLegal

I am new to this board , have been following for some time now, but first time to post.I am in houston hotel awaiting my 3rd visit to MD Anderson, I had originally came here to start IPI Friday, but scan results thursday shows brain met, which is reason for gamma knife tomorrow. I was kinda of shocked by the news so did not ask alot of questions that i should have and i know you guys are full of great information.

So first question is for anyone who has had gamma knife procedure, exactly what is this? procedure? down time?etc.

and the scarey question Bio Chem how bad is it really? I know every person is different but there are those symptoms that you can pretty much expect what are they???   please help!!!!!!!!!!!!!!

Thank you in advance, I have not put anything on profile yet, but will. I am actually in lobby of hotel so limited on time. I will check back later and thanks again.

Laura

I cant take a step LORD without you holding my hand

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Replies by: NYKaren, Vermont_Donna

Hi everyone:

As most of you have read, I'm due for my last dose of Ipi on Thursday.  My stomach side effects are being managed well, but this rash/itch is pretty bad.  I know other side effects from other treatments make a rash seem like child's play, but it's bad, and last time I met with Dr. Halpern (dermatologist who co-heads Melanoma program at Sloan) he prescribed Doxepin, 25mg.  Aparently it's an old antidepressant, wich he said they use a lot on severe rashes with good results.  I already take 1 Zyrtec daily plus a short-acting antihist. every 4-6 hours.  Plus steroid creme, menthol creme, powder after sweating, etc.  

The instructions are "1 at bedtime, after tolerated and still pruritic after 5 days, add morining dose, then after 5 more days, may introduce 3rd daily dose."

I just started adding the morning dose.

So, I was just wondering if anyone here has had any experience with the drug.  It certainly makes me sleepy, so I'm curious if I can stay awake today after just starting the morning dose!

The only visible change in the mel is that there is some white running through it, but nothing has flaked off as Dr. Wolchuk hopes--he did say that the Ipi could work, but I would still have the pigment, but he does hope, as do i, that it will flake off.  I also notice that some small spots have increased slightly running from the mel (on my temple) towards my eye.  It figures that I won't see Dr. W. for my last infusion (I guess he'll be away) as I always have, but I will try taking a picture of it Monday and emailing it to him.  I'm so anxious about whether this will work or not, possibly "advancing" to stage IV, etc.  I guess we all experience that with any treatment, but it's still so scary.

Hope everybody's keeping cool,

Karen

Don't Stop Believing

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brownidgirl1's picture
Replies 4
Last reply 7/24/2011 - 1:32pm

Hello, I just signed up on this site today because I am having a slight complication from surgery to remove 2 lymph nodes from my left groin. I have read the stories shared on this site and my prayers go out to each and every one of you!! I have questions but am having difficulty getting answers or results from my doctor and wanted to see if anyone here had any simiar experiences or advice.

After the removal of the lymph nodes I did not have any drains put in. I have had to go to the surgeon twice now to have him drain the site with a syringe. The site keeps swelling and filling with fluid and there is nowhere for the fluid to go. On my last visit I believe he used a lightly larger needle to drain the fluid so it is draining itself a little at a time but it is still swollen. My fear is that I will end up with an infection or that I will end up in the doctor's office every few days to continue to have this drained.

Does anyone have any advice or suggestions? I would appreciate it greatly!! Again, my prayers go out to everyone who is facing this battle!

Thank you,

Kelly

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MikeWI's picture
Replies 8
Last reply 7/24/2011 - 12:04am

I am new to this site, having been diagnosed with melanoma on 5/25.  On my lower right leg, I always had a mole.  Being of irish descent and fair skined that was common.  Around November of last year this mole flaked off like dead skin.  Shortly afterwards it was replaced by a scab and that scab started to grow in size. 

I went to my doctor in May of this year and had the mole removed.  They examed it, and found it to contain melanoma. 

Shortly after that is a daze of tests I had a CT/PET scan, sentinel lobe surgery and a surgery on my leg for a deeper incision.

The PET scan showed the cancer had not yet Metastized, my lymph node was clean of cancer, and so was the tissue sample from the deeper incision.  Due to the size of the tumor(7mm thick) I am considered stage 2.

My next step may be a interferon treatment.  I have faith in my Doctors at the University of Wisconsin Hospital

I have read everything on this web site including the following quote "You have been given a Diagnosis not a Death sentenace"  Does anyone know any other strategies for dealing with this disease?

 

Thanks,

Mike 

Search and Destroy

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triciad's picture
Replies 15
Last reply 7/23/2011 - 8:37pm

Hi Everyone,

It's me again.  I just had surgery to remove an intransit from by buttock area.  This puts me now at 3C.  My oncologist wants me to do a little radiation to that area.  He says it's painless and hopefully will kill any cells left behind...on my behind...ha ha.  He also said it would not exclude me from any treatments in the future. 

I have an appointment next Wednesday with the radiologist, but I was hoping some of you could share some advice or experiences with localized radiation.  How many zap sessions are usually involved?

Thanks for all of your help!

Tricia

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