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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aldakota22's picture
Replies 5
Last reply 8/9/2013 - 10:34pm

Wishing every fighter and their families a loving holiday.I know so many of us are counting are blessings just by being able to celebrate Thanksgiving.Something we would not have been able to do without Gods help and medical research advances made  against melanoma only a few years ago.One day soon I think we all beleive that there will be a real effective traetment for this killer disease.Beat the Beast.  Al

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dian in spokane's picture
Replies 10
Last reply 11/24/2012 - 9:37am

okay! Well, I couldn't really find anyone to speak up and say that they've had targeted radiation for a lung met, but that's the route I'm going for. I see them for set up today, and next week will start 5 treatments of SBRT, two a week, to kill off that single nodule in my right lung.

There is an enlarged lymph node in my mediasternum, which my oncologists do not believe to be melanoma (it is 19 mm, so bigger than the nodule we are removing) but has not lit up a single PET scan so we are just going to watch it with the same scans we use to follow the radiation success.

They are also doing a little genetic testing on my biopsy sample, looking for the CD 30 antigen, for a possible monoclonal antibody study in the future. And today I might look at how much of that sample is left for some other genetic testing.. maybe an anti pd1 trial.

I am also still considering a trial (if I can find one) that might be available post radiation, but I'm not all that keen on ANY trials this time around.

My radiation doc was very encouraging, talking to me about another melanoma patient he has who he's been treating for 10 yrs now, occasionally frying out new nodules as they appear and returning her NED status. She, like me, is one of those melanoma patients who have had single tumors pop up after years of remission. SO I like that.

This nodule, I think, is the perfect way to experiment a little and see if SBRT can be effective for me in the future as well. It is such a slow growing thing, that even if the SBRT doesn't work, I'll still have plenty of time to try some other thing in six months if it turns out not to be dying.

Since I haven't been able to find much on here from people who've used SRS for lung mets, I'll be on here reporting how things go for anyone who might want to consider it in the future. (Consider this a CALL OUT to anyone out there who HAS dealt with a single lung met this way, please chime in!)

I'm also interested in looking again at any trials that might be available for stage IV patients with no measurable disease. Something I could maybe get into after the radiation is done.

Thanks!

 

Dian in spokane

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Linny's picture
Replies 3
Last reply 11/28/2012 - 10:43am
Replies by: mel123, POW, kylez

Great article that summarizes treatments for melanoma. I really like how it provides summaries of trials.

http://www.biomedcentral.com/1741-7015/10/23

 

Stage III, Unknown Primary; 1 positive node in left axilla

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melalisa's picture
Replies 3
Last reply 11/21/2012 - 9:50am
Replies by: Anonymous, POW, Janner

I will try to make a long story short. Back in August I had an 8 mm mole removed from my calf that turned out to be melanoma.  The original path report showed .89 breslow depth, Clarks level III, no ulceration, and it did not list a mitotic rate. My dermatologist did a WLE and said he does not recommend SLNB's for melanomas under 1mm breslow. The WLE came back all margins clear. In the meantime, I scheduled an appointment with an oncologist that specializes in melanoma at the Ohio State University for a second opinion.  He had the original lab forward my slides to his pathologist.  The original lab took over a month to forward the slides.  I finally saw him today and his pathologist shows the mitotic rate is "approximately 1/mm2". He was struggling with whether or not to do a SLNB because he usually does it if the mitotic rate is higher than 1 and does not do it if it is lower than 1 and mine is "approximately 1".  He tried to call the pathologist to get her opinion and could not reach her.  He finally decided to have me see the surgical oncologist to let him decide. They should be calling me in the next few days with my appointment date and time for that. 

I am a little shocked because I was hoping and assuming that I was just going today to get the final all clear and instead I am back into another waiting game and it appears I have gone from T1a to T1b based on that mitotic rate.  I found an article on the Skin Cancer Foundation's website that says the AJCC Melanoma Staging System recommends a SLNB for patients with "T1 melanomas and secondary features associated with increased risk for nodal micrometastases: ulceration, mitotic rate greater than or equal to 1/mm2, or Clark's level IV, especially when the primary melanoma exceeds 0.7 mm in thickness". So mine is greater than 0.7 mm in thickness and has a mitotitic rate equal to 1/mm2, which means that I should have this test.  Of course, this is just one opinion. 

On one hand, I do not want another surgery, but on the other hand I would rather be safe than sorry.  Does anyone else have any experience with this?  If I do end up having the SLNB, what is the recovery time and how soon can I expect to go back to work?  I have a desk job that does not require any manual labor or heavy lifting. 

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Has anyone heard of this or researched it?  There's info at pubmed but I can't access the full articles.  Other than that I don't see much.  Looks like the info is from 2009.

Live!

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Has anyone heard of this or researched it?  There's info at pubmed but I can't access the full articles.  Other than that I don't see much.  Looks like the info is from 2009.

Live!

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Colleen66's picture
Replies 4
Last reply 11/29/2012 - 10:43am

I got the pathology from my surface lymph node dissection surgery.   All clear margins and no detectable cancer.  I never thought I would ever be so happy to stay at stage 3A.  I am so thankful.  Next steps are ct scans and Interferon.   2 surgeries in 30 days.  Do things always move this fast?

Happy Thanksgiving everyone.

Colleen 

Live!

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jukst9's picture
Replies 2
Last reply 11/20/2012 - 6:05pm
Replies by: jukst9, Janner

Hi -

I had a deep shave biopsy node on a mole appx 4mm wide and 2mm in length.  The report has me terrified, as do the doctors, as they feel a dermopath should re-read the slides based on the info provided, so that is scaring me.  Here is the original result:

 

Clarks dysplastic nevuse, compund type, inflamed.

Unusual with features of partial regression.

Margins negative for lesion.

In addition to the area of partial regression, the unusual feature is a reare melanocyte above the dermo-epidermal junction.

Because of these unusual features complete but conservative re-excision is suggested as clinically indicated.

 

Does this mean I have melanoma?  The surg-derm seemed concerned that there was no detailed info in the report and wants to have a dermpath re-read.  Please help!!

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/20/2012 - 5:03pm
Replies by: Anonymous, polo, Janner

Hello My special someone has been diagnosed and has had a small surgery removing some of this melanoma cancer. I would like to know if anyone who has had similar symptoms can tell me how to communicate with my special someone. Im trying to understand how to support and what I can do to be there for.

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Sharon's picture
Replies 2
Last reply 11/20/2012 - 9:55pm
Replies by: aldakota22, Tina D

My husbands CT scan shows no sign of cancer! Praise the Lord I am so Thankful to HIM. He is still on Hydrocortisone 30mg a day he has adrenal fatigue from being on steroids during Yervoy treatment. He is leading a normal life doing all the things he loves to do. I wish you all a most wonderful Thanksgiving.

God, Family, Friends and Dogs ~ it's all that really matters!

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Anonymous's picture
Anonymous
Replies 0

Hi, both my sister and I are Melanoma patients. My sister is overweight ( BMI of 30) and at her last check up the doctor told her she is at risk for diabetes if she doesn't lose weight . He suggested diet and exercise after she asked him to give her something to help her lose. She went to a local weight loss clinic and they prescribed Phentermine- it's a psychostimulant drug in the phenethylamine class ( similar to amphetamine) and works by suppressing appetite.  A doctor runs the clinic, but he seems like it's a fly by night type deal.She insists he told her it's safe with her history of Mel- Stage 1 - 6 years ago.

I'm concerned for her and don't want her to take it as I'm afraid it will bring back her Melanoma. I know people with Melanoma take anti depressants that have similar amphetamine properties ( like Wellbutrin) but does anyone have any experience with this drug or know if it's unsafe for Melanoma patients? Thanks for any info provided.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/20/2012 - 2:56pm
Replies by: Janner

Hi, both my sister and I are Melanoma patients. My sister is overweight ( BMI of 30) and at her last check up the doctor told her she is at risk for diabetes if she doesn't lose weight . He suggested diet and exercise after she asked him to give her something to help her lose. She went to a local weight loss clinic and they prescribed Phentermine- it's a psychostimulant drug in the phenethylamine class ( similar to amphetamine) and works by suppressing appetite.  A doctor runs the clinic, but he seems like it's a fly by night type deal.She insists he told her it's safe with her history of Mel- Stage 1 - 6 years ago.

I'm concerned for her and don't want her to take it as I'm afraid it will bring back her Melanoma. I know people with Melanoma take anti depressants that have similar amphetamine properties ( like Wellbutrin) but does anyone have any experience with this drug or know if it's unsafe for Melanoma patients? Thanks for any info provided.

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parkmk80's picture
Replies 6
Last reply 11/23/2012 - 9:18pm
Replies by: Janner, parkmk80, Anonymous

Hi, I'm a 32 year old female who has atleast 200 moles.  I have been diagnosed with Dyplastic Nevus Syndrome and have had atleast 20 moles removed.  All but 2 have came back mild while the other 2 were moderate.  I just received pathology report on 3 moles that were cut out by a new dermatologist.  My old derm who I still see as well never sent me a path report.  So they all three came back the same way.  Can someone please explain some of these things.  Like I said I have atleast 200 more of these things on my body and just found more on my scalp.  I'm concerned since I was an avid sunbather until I was 30.  Anyway here is the path report. Any and all comments appreciated!

 

DIAGNOSIS: Compound melanocytic nevus with  mild dysplasia, excised (surgical margins not involved)

Histologic sections demonstrate skin with a melanocytic proliferation.  Melanocytes are present in nests, with scarttered single cells located predominantly along the dermal/peidermal junction, extending along elongated rete ridges.  There is occasional bridging of horizontally oriented nests of melanocytes between adjacent rete ridges.  The melanocytes display slight cytologic atypia.  Pagetoid cells are not prominent.  Papillary dermal fibrosis, a mild lymphocytic infiltrate, and melanophaes are noted.   Nests of melancytes are preent within the papillary dermis and appear to be relatively mature and lack significant cytologic atypia.  Surgical margins are free of mevomelanocytes on sections examined.

 

 

Thanks so much,

Mary

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Jls377's picture
Replies 5
Last reply 11/21/2012 - 3:16pm
Replies by: Janner, Gene_S, POW

I am trying to find out if it is worth trying the hypethermia treatments in combination with radiation. I have heard mixed reviews from the doctors.

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BethA in VA's picture
Replies 2
Last reply 11/26/2012 - 12:05pm
Replies by: dodgedh2, Tina D

I just passed the 8 year mark of NED with Stage 3/B Melanoma.   For the first time since 2004 I don't have to return to my oncologist for one year!!  This is a big victory.

At the same time I got good news, the husband of my friend was fighting for his life.   He only had a 8 months since diagnosis, and thought he was responding well.  Then about 1 week ago, he had Gamma Knife surgery, and was unresponsive from then on.  I attended his funeral today.   We rejoice that his fight was not long, but I feel so bad that he just never seemed to have a chance. 

I think I feel guilty...which I  know makes no sense.  But I am well, and he is gone.  This has brought back many emotions that I thought were gone. 

BethA   Once again NED 8 years        (NED 10 years between MM #1 and #2)

Melanoma tends to cut into your looks!!

 

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