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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CaliforniaSun's picture
Replies 2
Last reply 4/18/2016 - 8:58pm
Replies by: KimberlyVU, jennunicorn

I guess I won't be getting my taxes in today, afterall. In about 15 minutes I will be heading back over to the UCSF Dermatology department for my biopsy. I knew it had to happen, but was still surprised by the concern on the doctor's face and her saying we have to get this done today...

I did the whole-body photography today, I loathe being naked in front of strangers. Luckily I had the good sense about 4-5 years ago to be photographed, so UCSF will be getting those records and can look at the changes in my moles.

The mole we are going to biopsy today is fairly large, flat, 2-3cm I think and irregular, an "ugly duckling" and all that.

I can't believe I'm concerned about the impending scar. That should really be the least of my worries.

-CaliforniaSun (Mary)
woman, 36 years old
San Francisco
family history of basal cell (?) carcinoma (mother)

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rhodri's picture
Replies 3
Last reply 4/18/2016 - 7:54pm
Replies by: Scottw, Mat, AshleyS

Firstly i have been following this board for over two years but have not posted as there has not been much to say to this point!    This is a really incredible resource with respectful knowledgeable wise group of people  Almost happy to be here

Diagnosed Stage 2A July 2013  nodular type 3 5mm  WLE completed  Neck Location Sentinel Nodes clear One year on interferonwhich stopped October 2014

In January i had palpable lymph nodes in my armpit confirmed melanoma mets by biopsy  

CT scan showed further mets right adrenal 5cm both lungs 1 5 and 1 0

Started IPI NIVO combo on March 17   Uneventful apart from some d and v and a  chest infection I thought coincdental

This week after the second infusion and i have had diarrhoea and vominting since day 3   Have been back into see the team a few times and they are very pleased with the results LDH is dropping from 500plus to around 300 chest xray is showing positive changes  Very happy with their care but wondering if anyone with first hand experiene has any thoughts?

 

Taking Imodium 16mg daily

Ondasseton 8mg three times a day

All the best

 

Rhodri

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So the T-Vec injections I have been getting don't seem to be working on their own and my oncologist has decided to start me on Opdivo. I have read all of the side effects from their website, but I would really like to know what other patients have encountered being on this drug. 

Got PET scan results back and a spot was found on my left breast that now I am having to get biopsied to see if it's breast cancer or my melanoma spreading, so I'm not sure if the above treatments will continue, but I already have one scheduled for the 26th, so any help wouldl be greatly appreciated. Thanks in advance. 

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Mat's picture
Replies 15
Last reply 4/18/2016 - 6:30pm

I'm very encouraged to see the numerous posts by folks that have had success with ipi/nivo.  After progressing on other standard treatments over time, I moved on to ipi/nivo in January.  I have my third infusion this week (and have been fortunate to date with mild side effects).  Here's my question--most folks that have done ipi/nivo did it without prior treatment.  I believe that the clinical trials were only open to treatment naive.  If correct, the (impressive) data and response rates from the trials are limited to treatment naive.  Are there any folks that have done (or are doing) ipi/nivo following prior treatments and, if so, how are you doing?  (I have not been scanned (other than routine brain MRI) since starting ipi/nivo.)  Thanks.

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AshleyS's picture
Replies 16
Last reply 4/18/2016 - 6:18pm

Hi friends,

It has been a while since I have posted. However, I've been checking up on everyone. It's great to see lots of old names doing well but I'm always sad whenever anyone posts bad news. 

For those of you who have been given NED/NERD status, can you tell me what your plan is for the future? I'm specifically wondering what everyone is doing concerning scans, appointments, and treatment. I know all of the immunotherapy treatments are relatively new and there is no definitive answer. However, I just want to compare plans. 

After failing traditional chemo, I switched my care team and started the combo trial in March 2015. I made it through 3 rounds but was kicked off due to grade 3 diarrhea. Scans showed 95% tumor reduction in May of 2015. I then did one singular dose of ipi and will have my 23rd infusion of Opdivo tomorrow. I was given NED status in November and my scans last week were clear. My plan is continue Opdivo until June 2017 (although my doctor is toying with keeping me on indefinitely - I'm a 32-year-old wife and mother of two toddlers so she says she doesn't want to "mess around"). I'll also continue to have scans every 12 weeks for another year and a half. I take my treatments at a nearby clinic in North Dakota, but have scans and see my melanoma specialist at MD Anderson. 

Again, I realize there are unknowns - I'm just wondering what others who've reached this point have done/are doing. Also, I'm not complaining; I'm perfectly fine with remaining on treatment for another 60 years. Thanks for your help folks. 

Ashley

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/18/2016 - 5:58pm
Replies by: jjw2014, Anonymous, Scottw, JuTMSY4

My wife is currently Stage IV and has recently completed her fourth round of the combo. At her recent CT scan, about 15 weeks into treatment, she had mixed results; some spots stable in lungs and liver, but several new spots have appeared in the skin. From discussing with our doctors, most response is occurring within the initial 12 weeks or so. I was wondering if anyone here on this combo has 1. had an experience where it took longer for the treatment to have an effect and 2. experienced new spots appearing before the drugs began to work? We are investigating other treatment options and trying to determine how long to continue with the combo before trying something else.

Appreciate any insight you can share on your experience being on the combo.

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landonm's picture
Replies 4
Last reply 4/18/2016 - 1:20pm
Replies by: landonm, Janner, casagrayson

Hi- I am newly diagnosed with melanoma in a cervical lymph node after having a small melanoma removed from my neck 4 months ago. Scans are done, lymph node sent off to Mayo clinic for Braf & other further testing as I understand it and I have an appointment at the Melanoma Clinic at the University of Michigan coming up.  

My question is about the path report on the WLE done in the original spot. First, I noticed that it was a shave biopsy.  There is nothing on it about Clark's level.  It does state breslow depth .35.mm which I know is very thin, but hey! Here I am with a positive lymph node 4 months later.

the pathology report is as follows:

Subtype: superficial spreading malignant melanoma

Cell type: epithelial

Ulceration, regression, satellitosis, vascular extension,lymphatic extension, perineural etension : all not identified

Mitotic activity: 2/mm2

Host response: lymphocytes 3+, melanophages 1+, fibrosis is present

Margins: The tumor extends to the peripheral margins and focally to the deep margin

What concerns me is the part about margins. It sounds as if the "tumor" goes thru the whole depth of the specimen so how can a depth be determined? I guess this is really water under the bridge now, but I would appreciate any thought.

PEGGY

 

 

 

 

Peggy Landon

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Mellani's picture
Replies 4
Last reply 4/18/2016 - 9:19am

I haven't posted here in a long time! I just added my patient story to the site under the name Melissa W. This is the first time I've mentioned an anniversary, because I have severe survivor guilt and I feel bad for others who haven't survived this awful disease. But, since it has been 10 years since my diagnosis, I want to share a message of hope and love to everyone who is struggling with melanoma, and all of our loved ones who care for us melanoma patients. 

I was diagnosed stage 3 on April 17, 2006, which was determined to be stage 3B on May 24, 2006. I chose not to do interferon. I did 11 days of GM-CSF in July 2006, but became so ill from the side effects that I stopped the injections. I had x-rays and bloodwork every 3 months for a couple years, then every 6 months for a few years, and finally just annual checkups, or as often as I need to go because I get scared that a new symptom is a recurrence.

I am so incredibly grateful for my family, friends, and doctors who helped me through this in the last 10 years. I think I should send a thank you card to my surgeon and let him know I'm still around. He removed all of the melanoma in three surgeries and I honestly think he saved my life. 

Being diagnosed with melanoma was a frightening experience. I read other patients' posts and blogs. I researched everything I could find on the internet about all stages above mine, just in case I needed to know what to do next. I lost people from MPIP whose melanoma spread and couldn't be stopped. I stopped reading the posts and blogs after a while because it was overwhelming to continue to connect with people through their stories, then lose them. 

Thank you to MPIP for being there for me when I felt scared and alone and needed some support. I don't think I would have done so well in those first couple of years without the help, and I'm glad MPIP is here for those who need the support now. 

heart

Mel

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Ninniditti's picture
Replies 3
Last reply 4/17/2016 - 5:21pm
Replies by: Ninniditti, Bubbles, MoiraM

Hi, I would like your opinion. Since diagnose seven years ago I have tried all available treatments, surgery, highintensive radiation + cisplatin, a lot of surgery after recurrence, nivo, yervoy, dacarbazine and keytruda. Nothing has helped but dacarbazine hold it stable. I can't have TIL or T-vec. Two months ago I had radiation just to reduce the pain, the tumour is in all my bones in my left face. I am now almost free from pain and am now supposed to have temodal, the same as dacarbazine but in tablets. All these seven years I have been very very tired and felt sick so I hate to begin with chemo. Am I stupid to just go on without any treatment at sll. Quality before quantity. I am 67 and could have a wonderful life if it wasn't for this tiredness and sickness. As I wrote I just wan't your opinion on this. 

Ninni

Inger

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Maureen038's picture
Replies 9
Last reply 4/17/2016 - 6:33am

My husband had his second scan with TDM1(Sloan Kettering found he had an over abundance of the her-2 mutation).  We are so thrilled!!! He has only two very tiny lung nodules left. Hopefully, the drug will continue to work. My reason to write is to encourage everyone to keep fighting and to look everywhere for alternatives. He has done HD interferon, TIL at NIH, Ipi /Nivo in Pittsburg and DTIC in md. We are not giving up!!! We wish everyone the best!!!

Maureen

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KimberlyVU's picture
Replies 3
Last reply 4/17/2016 - 3:45am
Replies by: Anonymous, Janner, jennunicorn

Hi Everyone,

I have a suspected amelanotic nodular melanoma and had an initial consult with a dermatologist that has now scheduled me for a 8mm punch biopsy.

Everything I read says that I should be having a wide excision.

I feel like he is taking the less invasive route because he doesn't see bumps that look like this.  I am scared of getting an incomplete diagnosis becaues I don't want to be rude or pushy with the doctor.

Should I push and demand a wide excision?  Should I see another doctor? Another doctor is going to take time to get a referrel and basically start from square one again. 

Please don't tell me you can't be sure or no one can tell me what to do etc. I already know that I just want to know in the opinion of other people who have had their melanoma diagnosis what would you do?

Kim V.

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Tamlin's picture
Replies 15
Last reply 4/16/2016 - 10:28pm

Just got diagnosed today. After 10 years of being NED..... It has returned. I had a ct scan today which thankfully didn't show anything outwith the lymph nodes, however the fine needle biopsy in my right groin proved to be melanoma and I don't mind saying I am scared witless. I am going for a pre op assessment tomorrow morning and the surgery next Wednesday for lymph dissection.

im scared of the op, I'm more scared of the diagnosis and still haven't really got my head round it. I haven't shed a tear, it just all feels like it's happening to someone else X 

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Tamlin's picture
Replies 4
Last reply 4/16/2016 - 10:14pm
Replies by: Tamlin, Janner, Anonymous

Hi 

can anyone on here tell me what stage my melanoma is? I asked my consultant but he swept over it and changed the subject. 

I had my toe amputated due to an ulcerated melanoma 4mm thick, 10 years ago. 

I now have a rather large swollen lymph node in my right groin which has proven to be melanoma. I will be having all my numbers des in right groin next week, but I would just like to know staging etc. Not knowing is worse, I think xxx 

 

thanks 

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DZnDef's picture
Replies 4
Last reply 4/16/2016 - 8:29pm

My brother has continued to deteriorate and is in the hospital now waiting for a transfer to a skilled nursing facility.  He has a healthy appetite and continues to have bowel movements but nutrition does not appear to be reaching his muscles.  They have attempted to rule out other causes of his multiple myeloma (I think that's the right term).  He is down to 4mg every other day of his steroid.  Brain MRI shows all of his brain mets have shrunk by half (he had SRS and was on Zelboraf for one month, off for one week for side effects (lung pain), due to re-start soon).  His chest scans show his lung mets have either disappeared or shrunk by half.  Yet during this time he has continued to weaken and appears to weigh even less.  He cannot get out of bed without assistance and cannot sit up for more than a few minutes at a time without needing to lean on something.  The Zelboraf appears to be working, yet his strength is not returning.  This is very confusing.  Is there a point where cachexia cannot be reversed even if the cancer drugs are working?  Where is all that nutrition going if not to his muscles?  I would guess the cancer except the cancer is shrinking.  We don't know for sure this is cachexia but what else could it be?  Any ideas?  Suggestions?

Thank you all for your support.

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012

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