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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Girl52's picture
Replies 4
Last reply 10/13/2014 - 10:18am
Replies by: Janner, Linny, Girl52

If a path report says "metastatic melanoma" and they haven't found the primary -- and assumption is that primary is/was also in skin -- does this mean that the cancer spread from skin site one-to-lymph- system- to skin site two? Or can melanoma metastisize from one skin site to another with no lymph or blood involvement? And if so, does this make the metastasis any less threatening or easier to treat? Or is it not metastasis if no blood or lymph node involvement? Hope this makes sense.

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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For those of you curious about an Alternative or possibly integrative approach to cancer, a free 11-part documentary begins airing tomorrow (Monday the 13th) at 9pm EST online.  The link below will take you to a trailer, if you watch the trailer and would like to watch some or all of the episodes, you would provide your email address and then you will be provided access to view the series.  I watched their last series and found it informative.  I also noted they didn't send me many emails (maybe one a month) until they started advertising this new series.  They are hoping you will like the series enough to buy it after the free period ends.  Last time, they left the videos available for viewing a full 24 hours after the initial release.  Not sure if they'll do that this time or if you have to watch "live".  There are several doctors, researchers and survivors interviewed.  Here's the link:

Cheers - Maggie

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

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cbs805's picture
Replies 4
Last reply 10/15/2014 - 4:04am

Does anyone know what can be done about this? My husband has been required each time to sign an ABN (Advance Beneficiary Notice that the scans likely won't be covered by Medicare) for his PET/CT scans. Medicare has always paid until this last one. I know there is a limit to how many they will cover so apparently that limit has been met and we now have to pay. Is there a way of appealing this denial and getting it paid by Medicare? Why does Medicare limit the number of PET/CTs a patient can have? What scans do they recommend instead of the 6 month PET CT? Thank you


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Anonymous's picture
Replies 11
Last reply 10/17/2014 - 11:20am

Hi Everyone,

I post often, but I'd like to keep this anonyomous.  I have been stage IV for over three years.  The cancer battle is going well, but I am really struggling with side effects.  I do not respond well to rah-rah, cherish every day . . . I do well just plugging away (I smelled the roses before stage IV).  But recently I feel borderline depressed and my marriage/personal life/work/etc., are all struggling.  I have small children and nor much 'me' time, and I am always tired.

Any [realistic] ideas?  Thanks.

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kalisama's picture
Replies 9
Last reply 10/19/2014 - 12:29pm

I;ve been going through so much lately that i haven't had time to check in to the forums, but hope to be back around more as i contiue this journey with y'all.

I'm wondering if others with aggressive brain mets have also been diagnosed with Leptomentingeal disease? While I understand it to be somewhat rare, it now has me more concerned than the melanoma itself. I have been having increased CNS symptoms from numbness to urinary incontenance, as well as some cognitive breakdown. I'm not even sure what to ask my oncs about this new progression which is evidently very full on for me.

Last brain radiation failed, and the 2 largest tumors we are after have tripled in size in 3 weeks after cyberknife. we're going to try to go after them again this week. with the hope that the first Yurvoy infusion of 2 weeks ago may help the radiation work better this time. Starting to run out of options short of WBR, a whole other thread that I'm hoping to not have to go down here or in life.

Anyway, as always, I'm interested in your experiences and wishing you the best of health always.

Blessings and gratitude to all,

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Patina's picture
Replies 2
Last reply 10/15/2014 - 7:29am
Replies by: bilben_r, Ginger8888


Are there any Yervoy responders who have gotten shingles?  If so, what happened after shingles? i.e. Did you stop responding to Yervoy, respond less or was this just a side effect?

My Mom had a shingles breakout (she has had them before) and there are not a lot of Yervoy patients who have had them.  Wondering if her immune system is under duress and Yervoy may not be working as well as it has, or what...  


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Anonymous's picture
Replies 2
Last reply 10/15/2014 - 3:14pm
Replies by: JerryfromFauq




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liam1209's picture
Replies 5
Last reply 10/11/2014 - 7:52pm

my father has metastatic melanoma stage IV (mets in his lungs) and we are deciding wether we start on ipi (hoping it works) followed by anti PD-1 or go the clinical trial route.  Right now he has not done any treatments, and I am concerned once he starts Ipi, he will be limited on his options for clinical trials.  What are some of the best clinical trials out there right now in your opinion that could benefit my fahter? 


thank you so much! 


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Replies by: Carole K

I have two small deep dark moles one arm and  foot. Although very small but it's very strange: no spread, periodically grow up with tough shell then drop, again and again for 3 years. After seeing some material, I'm so afraid that they are or would become nodular melanoma, which grow without spread.

I will stay in San Francisco this winter, so want to see a dermatologist in UCSF (referenced by posts in this forum). However, some posts say that NM is so easy to be missed, so could anyone be so kind to recommend to me an experienced doctor in UCSF? Thanks a lot!

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tschmith's picture
Replies 10
Last reply 10/16/2014 - 12:29pm

Yesterday I finally got my first set of scan results since beginning Keytruda in July.  My tumors are shrinking! A soft tissue mass has disappeared. Some lymph nodes have gotten larger but I was told that this is common with immunotherapy and that they will hopefully shrink as well. No new mets. Got my info in a phone call so I haven't actually seen the radiologist's report yet.  My back tends to bother me in the L2 area where Melanoma fractured my vertebra, but there doesn't appear to be any changes. (Had surgery and now have 2 rods/6 screws.)  It doesn't hurt but gets stiff and tires easily. We discussed getting more physical therapy and some other options.

So...Keytruda is working and I'll get my next infusion on the 21st.  

smiley  That happy face kind of looks like me because my eyelashes and eyebrows have turned white since my third infusion.  :))))

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bostonglory's picture
Replies 4
Last reply 10/12/2014 - 7:55am

Hi there

I had melanoma on my back when I was 16. They did a PET scan and removed bilateral axillary lymphnodes. I have been getting my blood work and x rays until 5 years out (2011).

I had a lapse in insurance and missed two years of skin checks. Anyways, I went to the doctor earlier this week and two biopsies were done. They are relevantly close to where my melanoma was last time. This is a brand new doctor for me too so I wasnt that comfortable. I am awaiting my results but I am also super nervous. I am currently 4 1/2 months pregnant and am paranoid about finding out I have melanoma again and cannot get treatment etc. I work as a nurse and live a super healthy lifestyle excercise, eat right, etc. 

I do not smoke. I dont drink. I wear sunscreen.


What are my chances of having melanoma again?

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Resilient4Life's picture
Replies 7
Last reply 10/12/2014 - 9:15am

My surgery went "well" according to the surgeon who spoke to my companion that brought me. In the recovery area I pulled up the gown and gazed down on my left upper arm and was shocked by the sight of the incision. It was bigger and it curved here and there. My diagnosis 2 months ago was 1A.

I have waterproof "glue" instead of stitches in the top layer of skin. I was told the underlying layers contain stitches, and the good news is that I don't have to have anything removed. Presumably the glue wears off, and after a 2 week post op check, I see my surgical oncologist twice more at 6 month intervals to confirm there is no new growth at the surgery site.

I understand the mechanics of the WLE, with the primary lesion being excised with 1 cm of good skin surrounding it, then an oval shaped area is cut, to make the closing of the wound smoother, flatter with no bumps or ridges. Still, I was/am distressed by the length of the scar (3 1/2 inches) and the way it looks carved out.

Possible interpretations are; This is normal, the surgeon found something he didn't expect, melanoma excisions aren't supposed to be pretty, straight or asthetic. No one cares about the excision unless it's on your face, and then a plastic surgeon would be called in.

The surgeon told me during the office consult that the depth of epidermis removed is  down to the muscle. I thought I had completely understood everything before I went in. Maybe it's post op blues or just a revisiting of the initial diagnosis when I realized I have cancer. This makes it "real."

I have the ability to use a secure website to ask questions, however the Nurse Practioner that has answered two prior inquires did not even look at my chart before answering. So that avenue is unreliable.

Thank you for any and all responses.

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sweetaugust's picture
Replies 3
Last reply 10/10/2014 - 6:17pm
Replies by: Bubbles, BrianP

Hi guys,

I had treatment on Wednesday and said I would give an update I went into it wondering if anything was going to change for my treatment plan now that Pembro/Keytruda/MK-3475 has been approved by the FDA.  And no, no change for me.  I am still on Pembro for good...with no end date.  And as of now they have no plans to change my dosage amount or 3 week intervals of infusion. 

My question has always been how much is too much and how long is too long to be on the drug.  I've always had it in my mind that at the 2 year mark (which will be in a couple weeks) I would come off the drug and see how I did without it.  My doctors said that they don't really have enough data on patients coming off of Pembro, as most are still on it.  They did mention that a few of the patients that have come off of the Bristol Myers PD1 treatment had their cancer grow back, but then when those patients went back on the drug, the cancer faded away again.  So they are seeing that staying on the PD1 drugs is a good thing.

So I guess the best thing for me to do is to just keep at it...and appreciate that I still feel great everyday. 

How about any others out there on the PD1's.  How long are you scheduled to be on it for?  Are any of you scheduled to come off of it or are you all no-end-date like me?

Thank you and all my best, Laurie

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Anonymous's picture
Replies 3
Last reply 10/10/2014 - 8:38pm
Replies by: arthurjedi007, BrianP

Hello All,

A little history first. Diagnosed in 2011 with primary in my calf. Had SLB and WLE and the SLB in my hip showed positive for melanoma. Took wait and see approach until more tumors showed up on my thigh so I went on zelboraf for 6 months until it stopped working. I followed this up with a IPI/IL-2 combination for 6 months when that treatment stopped working too. At a crossroad in life, I took time off of treatment to start a family and when my child was born in May they found a large mass near my uterus wall during the c-section... The location of the tumor was very close to where I had my SLB in 2011, so my Oncologist immediately suggested that it was a tumor in my lymph node. That and the fact that during my pregnancy I had several tumors pop up on my thigh and knee. 

In June I started Anti PD1 and recently had a scan last week that had mixed results. The scan showed some tumors in my thigh getting smaller or staying the same, and according to my DR the tumor near my uterus has not grown, although when we reviewed the scan together it certainly looked larger to me. And from my own observations, over the past 4 months I have felt the tumor almost double in size and even begin to protrude out of my skin a little causing discomfort. 

From what I read on this forum, this could be a good sign. Some report that their tumors grow rapidly before melting away. Unfortunately in my case, since having my scan last week I have had 2-3 new tumors in my upper thigh show up that I felt for the first time in the shower tonight. These tumors were not found in the scan and I'm starting to worry that I am wasting my time with this treatment. 

Any PD-1 goers have a similar experience? I hear it can take up to 6 months for a response but the waiting game is driving me crazy.

If I had to guess, the next stop for me will be TIL at MD Anderson unless i can confirm that I have a response from Anti PD-1. 

Any advice would be great. 

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Intralesional injections show promise for cutaneous melanoma   7 Oct 2014

7 Oct 2014

by ecancer reporter Janet Fricker

The poster session ‘Melanoma and other skin tumours’, held at ESMO 2014 in Madrid, highlighted the emerging field of intralesional injections for cutaneous melanoma leading to tumour regression not only in the injected lesions, but also in ‘bystander’ lesions suggesting that the strategy is augmenting immune response.

Cutaneous melanoma represents a persistent morbidity, including disfigurement accompanied by pain, ulceration, bleeding and infection.

Despite locoregional therapies, such as surgery and radiation, a significant percentage of patients have locally advanced disease at high risk for recurrence, progression and metastasis.

Now a number of new approaches are exploring intralesional injections of oncolytic viral immunotherapy and dyes to eliminate patient symptoms and prevent progression to stage 4 disease.

First, poster 1102P reported on an extension of the phase 3 OPTiM study in patients with unresected Stage IIIB-IV melanoma treated with Talimogene laherparepvec (T-VEC), a herpes simplex virus type 1-derived investigational oncolytic immunotherapy¹.

Earlier, at ASCO 2014 the investigators had shown that median overall survival was 23.3 months for the T-VEC arm compared to 18.9 months in the granulocyte macrophage colony-stimulating factor (GM-CSF) arm (HR 0.79, P=0.051).

Extension treatment was made available to patients who did not have clinically relevant progressive disease or who had experienced a complete response and then developed a new lesion within 12 months from the end of last treatment.

Altogether 31patients were enrolled into the extension trial, including three from the GM-CSF arm and 28 from the T-VEC arm who continued on randomised treatment for up to 12 months.

Results showed the best overall responses improved in seven patients in the T-VEC arm, with five patients who had a partial response in the main trial and two patients who had stable disease in the main trial achieving complete responses.

The adverse events reported were grade 1 or 2 in severity and did not lead to discontinuation.

“We were able to show that in some patients whose disease had returned we could get them back into remission by re challenging them with the agent. We also showed that T-VEC was very tolerable with no additional toxicity burdens for reinjection,” explained Kevin Harrington, study author from the Institute of Cancer Research, London.

Next poster 1103P, which received a best poster award, presented information on the CALM study exploring intralesional injections with a different virus, this time Coxsackievirus (CVA) A21, a naturally occurring ‘common cold’ intracellular adhesion molecules1 (ICAM1) targeted RNA virus.

In animal models, it has been shown that CVA21 lysed tumour cells induce a secondary systemic host-generated anti-tumour immune response.

Results of the phase 2 study showed that 22 out of 57 of stage IIIC and IV melanoma patients (38.6%) met the primary endpoint of immune-related progression free survival (irPFS) at six months.

The secondary endpoint of objective response rate (complete response partial response, according to irRECIST 1.1) was 28.1%.

Finally, poster 1120P provided the latest analysis of a phase 2 study evaluating intralesional injection of PV-10, a 10% solution of the dye Rose Bengal, in 80 patients with stage IIIB-IV melanoma².

The rationale for PV-10 is that the agent has a local chemo ablative effect where it enters lysosomes causing local necrosis, and then in some patients a systemic effect believed to be immunologically mediated.

Following injection previous studies have demonstrated increased CD8 , CD4 , CD3 and NKT in peripheral blood.

For the subgroup of 28 patients who had all their lesions injected with PV-10 (i.e. had no uninjected lesions), the poster showed the overall response rate was 71% (CI 51-87%) with 50% achieving a complete response (CI 31-69%).

The abstract furthermore showed marked differences in progression free survival according to number of lesions injected.

The 28 patients who had all their lesions injected showed a progression free survival of 9.8 months compared to six months for the seven patients who had a median of five untreated lesions.

“The progression free survival of 9.8 months compares favourably with historical progression free survivals of less than 2.5 months for DTIC/TMZ, “said Sanjiv Agarwala, the first author from St. Luke’s Hospital and Health Network, Bethlehem, Pennsylvania.

Such data he added, suggests PV-10 will deliver significant progression free survival effects in the phase 3 study, due to start Q4 2014.

“The abstract also shows us that we’re likely to get the highest responses when all lesions are injected.”

Additional data showed that for the 232 lesions that achieved a complete response 121 required a single injection, 84 required two injections, 22 required three injections and five required four injections.

“The few injections needed in this study bode well for patient compliance with PV-10-treatment,” said Eric Wachter, Chief Technology Officer of Provectus.

I'm me, not a statistic. Praying to not be one for years yet.

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