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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Anonymous's picture
Anonymous
Replies 5
Last reply 3/12/2016 - 2:35pm

Why do you suggest going to a specialist for melanoma? Do you typically just have that specialist do the surgery and give you a plan and never go back? Or do you follow through with that specialist to the end? Are there any of you who do a combination of home town and specialists?

Rebekah

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Spinbeast55's picture
Replies 12
Last reply 3/12/2016 - 1:38pm

Hello, 

I'm brand new to this but thankful to be able to reach out for advise. I was diagnosed with 2B Melanoma on my upper lip in Sept 2015. I had the tumor removed & the Sentinel Lymph Node biopsy came back negative. I had plastic surgery to remove a microscopic cell or two near the nerve lining and reconstruct the upper lip. Everything went well and my lip is beautiful - you wouldn't know it even happened. I followed up with 5 weeks of daily radiation targeted to the upper lip area, to prevent any reoccurrence. I recently saw my surgical oncologist for a follow-up, which included a CT scan which came back negative. He floated the idea of Interferon as an additional, elective, preventative measure & set me up with a consultation with a hematologist oncologist. During the consultation I asked if I didn't pursue Interferon what the chances were of NOT having a reoccurrence and he said 80-85%. The Interferon increases those percentages by 10%. I'm seeking a second opinion because I'm scared of the effects during and after the treatment. I am a very active 55 year old woman, currently melanoma free and healthy. I am a Christian and have deep faith in God and am blessed with a wonderful husband and beautiful family. I am a career professional in the financial industry and work for a major brokerage firm (high stress job). I work out weekly with Spin/TRX classes and try to maintain a healthy life-work balance. I'm really on the fence about starting the Interferon treatments for a year and the side effects during and after. I would appreciate any insight you offer. God bless!

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msitz's picture
Replies 3
Last reply 3/12/2016 - 4:43am
Replies by: EdwardKatz, Patina, Polymath

Part 1 of the story is here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

We just got some very exciting scan results back. In brief, my dad was diagnosed with Stage 4 Melanoma in March of 2015 and had several near fatal complications before he started responding to Keytruda. He has tumours in his abdomen, lungs, lymph nodes and brain.

This is the result of his most recent CT abdomen/pelvis:

"There has been interval significant disease improvement. Example - The largest left flank small bowel mass which previously measured 6.4x7.6cm now measure 3x4cm and a right lower quadrant and another small bowel mass which previously measured 3.7x4cm is now not definitely visualized. Left flank peritoneal nodule which previously measured 4.2x4.4cm is not definitely visualized."

That means that his biggest tumour is about half of what it was and the 2nd and 3rd largest tumours are gone! There were several other small tumours that have all significantly shrunk too. In March my father was given 2 months to live and now his tumours are 70% gone. His quality of life is excellent and he is planning a trip to South America for next year.

We could not be more thankful. There is hope to those of you with a stage 4 diagnosis with a very high tumour burden. His lung tumours are also responding very well, as is his brain tumour. Since starting Keytruda 7 months ago there have been no new tumours and everything has shrunk.

- msitz

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bajohnson02's picture
Replies 8
Last reply 3/11/2016 - 11:10pm

Hi all,

i posted a month or so ago reference being newly diagnosed with melanoma. I've since then had WLE along with a Sentinel Lymph Node biopsy. The original melanoma was on the top of my foot and the lymph node biopsy done on my groin area. My surgery was 3 weeks ago. During my follow up, I was told we got clear margins in my foot, but that 2 nodes were positive for micro melanoma.. My surgical oncologist only recommended a watch and wait approach. With suggestions from others, I went to a melanoma specialist and he has recommended the 2 year Yervoy treatment. I then went to another oncologist for another opinion and he agreed with the Yervoy treatment. 

I am terrified of this treatment. I've read others stories and tried to research it as much as I can. I suppose one of the things that concerns me the most is that this drug is already highly toxic, but with being stage 3, it has to be the 10mg treatment versus the 3mg for stage 4. 

What are your opinions regarding Yervoy for stage 3a? And if any of you could share your experiences, good and bad, it would be helpful. It seems the watch and wait approach has it's downfalls, and I'd feel like maybe I wasn't doing enough, yet this Yervoy scares me as well.. So I'm really confused where to go from here.. I have to make a decision soon, I go back for PET scan and visit with melanoma specialist right after to go over results from scan and set up Yervoy treatments. 

Thanks in advance for your help. 

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Maria C's picture
Replies 6
Last reply 3/11/2016 - 7:30pm
Replies by: Maria C, jpg, DZnDef, Kengeo3

Hi all,

Just did a search on this forum about steroids as I've been on and off them for the past 5 months, and am currently on another fairly long dose of them. Starting to get concerned about the short and/or long term side effects of taking predisone for the side effects of ipi/nivo. (like so many health issues, one complication leads to another...)

Has anyone learned (by either research or the hard way!) what to look out for, and if there's anything one can do naturally to counterbalance whatever havoc steroids tend to unleash on one's system?

Many thanks in advance for any advice -

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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Anonymous's picture
Replies 5
Last reply 3/11/2016 - 5:29pm
Replies by: Anonymous, Kim K, utee72

Hi everyone-

I went to the skin doc in early Feb to have a mole looked at. It actually looked nothing like a mole, more like a red blister, but it had been a little itchy for a few months, and I am fair-skinned with blue eyes (and have many, many blistering-sunburns in my past) so I thought I would get it looked at. The dermatologist that I saw did a biopsy and sent me away saying she would call within a week with results. Well, 2 weeks passed and no word so I called them. The office said that the sample had been sent to France and was "under consult" and they would call me within the next couple of days with some answers. So 2 days later they called and said that the biopsy did NOT show melanoma, but was so atypical that I need to be referred to a skin surgeon to perform the Mohs procedure. Well I waited and waited for they to contact me (as I was told they would) and finally about a week later my dermatologist called me and told me that the skin surgeon wanted me to go to an oncology surgeon instead and have a sentinel lymph node biopsy and skin excision at the site with 1cm margins--apparently he surgeon read my pathology report and decides that would be the best route for me. This was all (and still is) blowing my mind. So I go and see the surgeon 2 days ago and am yet to get an answer whether or not this thing is melanoma. They say they can't tell until they do the biopsy of the lymph nodes and if those are clear then "I'm all good." The report says that the sample had findings raising concern for melanoma, but also reassuring characteristics. Whatever that means. I am a worrier. I have spent countless hours crying and confused over this situation. I got a copy of the pathology report and it is like looking at a different language. The dermatopathologist says on the report that overall he favors "atypical dermal epithelioid cell nodular melanocytic proliferation with indeterminate biological potential, associated with dermal nevus remnant, extending to the margins." Can anyone tell me what that means? Or offer any advice when it comes to dealing with this? I want to be positive but I am terrified. And even if the lymph nodes are clear does that 100% exclude this from being melanoma? I am going for SLNB and surgery next Tuesday:(

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Gordknight's picture
Replies 4
Last reply 3/11/2016 - 5:00pm

So just to give you a bit of history here back in October of 2014 I was diagnosed with stage 1a melanoma on my neck.  It was .22 mm depth, clark 2, no regression, no ulceration, no mitotic figures identified.  I obviously did not have SLNB.  Fastforward to two weeks ago I noticed a tiny (less than pea sized) lump about a half inch away from my scar.  I instantly paniced thinking it was a subq in transit met which would then obviously fast track me to stage 3.  

I went and saw my derm today and he looked at it and removed it saying that he thought it was just a new mole developing ( I couldnt see pigment with the naked eye, could just feel it.)  I asked him about my fears and asked him what were the chances that this was related to my melanoma IE in transit met.  He said as close to 0% as he could say without actually saying zero.  He said the .1% chance it was related is the reason he removed it.  He then said less than 2% of melanoma patients with a melanoma as shallow as mine was recur and even then its almost always a local recurrence.  He has been practicing for over 15 years and he said that he has only seen in transit melanoma four times, all of which were black in color and from lesions deeper than mine.  He said they can be non pigmented or red or pink but they are almost always black if subq.  

Now I trust my derm with my life, but I am back into full panic mode now.  I can't help but think this is an in transit lesion.  Any thoughts or reassurance would be great if you have a similar experience or hell even if you havent but have something to add.  Id really appreciate it.  Thank you!

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Bigdaddy5's picture
Replies 9
Last reply 3/11/2016 - 11:33am
Replies by: Janner, Bigdaddy5, JuTMSY4, Linny

Hi All:

I am waiting for the results of my slnb from two lymph nodes taken from my right arm pit area. 

I'm currently stage 2a and am concerned about a plan for this "fork in the road" - hear one way and off to stage 3 and get ready to fight this battle now. Or, go the other way and look perhaps to a promising stage 2 adjuvant treatment while waiting for recurrence. 

The good news with waiting "10 business days" with lab results is that I've gotten myself ready for any news. 

Here's a question.  If I stay 2a with a negative slnb - what adjuvant treatment / trial / diet change would you recommend?  If I'm found to be stage 3, should I try to get melanoma genetically tested to see what treatment wouldn't work?

 

thanks,

Neil D

 

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keepthefaith11's picture
Replies 1
Last reply 3/11/2016 - 2:02am
Replies by: gregor913

My dad had his second infusion of Yervoy last Wednesday. On Saturday he started running a fever. It peaked 3 times at 104 over four days. Easily brought down by Tylenol though. Went to the doctor Monday no infection, blood cultures came back, no bacteria. Then yesterday he had a couple of episodes of diarrhea. Doctor decided to put him on a low dose of oral steroids for a week. She felt that fever and diarreha at the same time warranted precaution.

Started steroid this morning. Also this morning he had a mild ache in the lower belly. Went away in a couple of hours. He has gotten fluids 3 days in a row now. Kept up with the radiation and feels much better now. No fever, no loose bowels.

Just thought I would share if anyone is worried about a similar scenario.

Annie

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jennunicorn's picture
Replies 23
Last reply 3/10/2016 - 11:19pm

Does anyone have a great sunscreen they use every day that doesn't feel like they are wearing sunscreen? It feels like a neverending search for the right one. I have sport ones for when I am more active and don't care if I feel like I am wearing sunscreen. And I have face moisturizer with sunscreen in it that I like. But, finding that one for the whole body for just regular every day use seems difficult. I also hate the smell of most sunscreens. My derm recommended EltaMD sunscreens.. they are kind of expensive, not too bad, but before I go buying some, if anyone has tried it, do you like it for every day?

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Ahapkido's picture
Replies 9
Last reply 3/10/2016 - 9:31pm
Replies by: Kengeo3, mjanssentx, MoiraM, Anonymous, keepthefaith11, Ahapkido

My Father was just diagnosed last week with Melanoma. As he lives several states away from me I haven't been able to actually be at any of his appointments and I could really use some help understanding what I'm being told.

The information I've been given thus far is that the site was 4.22 mm. They'very already found traces in the blood, lymphatic, and nervous systems, as well as being certain that it has moved to his abdomen.

Dad says he'll have a PET scan next week. If it hasn't moved beyond his abdomen they'll perform a couple of surgeries, one to remove the tumor and another to rebuild his leg. If it has moved they will skip the surgery entirely and go straight to "heavy-duty trial drugs".

I don't really understand what a lot of this means and, more to the point, I don't know what this means for my dad. The dermatologist has put him at at least Stage IIIC, possibly more based on whatever information the scan can provide us.

I also don't know what I can do for him. I want to be there for him and help however I can, but since I live so far away I'm uncertain as to how to help him.

*sigh* All in all I'm feeling a little helpless here. Any help, advice, or information anyone can give me would be a big help.

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democat's picture
Replies 6
Last reply 3/10/2016 - 5:17pm
Replies by: Anonymous, dolphin5, kathycmc, thrashter

Hi everyone

 

I am stage 3a/3b (due to high mitotic index). I live in San Diego, and recently met with Kaiser's only melanoma oncologist (for 100,000+ patients), Dr. Gailani, who also runs Kaiser's biochemotherapy and IL-2 protocols  - they offer biochemo for stage IV melanoma and as adjuvant therapy for stage III. Unfortunately, Dr. Gailani left Kaiser suddenly this week for a medical leave that is expected to last several months, at least. It is too bad, because I had  complete confidence in him.

I was told by someone who works in the biochemo program that the program is closed to new patients while Dr. Gailani is gone.  Kaiser will be referring California patients who want biochemotherapy to USC or UCLA, but it's up to my local oncologist to make the referral, and she is hostile to my request.  She was "put ou" t when I asked to for a referral to Dr. Gailani, even though she has no particular expertise with melanoma, and gave me a lot of misinformation, and didn't even know about Kaiser's biochemo program.  She doesn't think I need a specialist.  (An example of her misinformation: she told me I didn't need scans because it doesn't matter whether a recurrence is caught early, because there would be nothing they could do - I would die within a year.  Dr. Gailani told me the opposite - that early detection of a recurrence is the most important thing, and that there would be plenty of options at that point.)

I would appreciate hearing from anyone else who is in this catch-22 at Kaiser because of Dr. Gailani's sudden departure. Also, has anyone had biochemo at either UCLA or USC? If so, what can you tell me about those programs?  Also, does anyone know whether adjuvant biochemo is offered in San Diego or Orange County?

 I'd love to hear from anyone who has done biochemo (interferon, IL-2 plus chemo drugs administered for 5 days in hospital three times, with 3 weeks off between each administration).

Finally, I need to change oncologists at Kaiser San Diego.  Any recommendations?

So, in summary, I'm looking for information re:

1. Dealing with Kaiser in Dr. Gailani's absence, getting Kaiser to give me an out-of-system referral

2. USC vs. UCLA for adjuvant biochemo, or is there somewhere in San Diego or Orange County?

3. experience with adjuvant biochemo

4. recommendations for a Kaiser oncologist in San Diego

Thank you!!

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

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jennunicorn's picture
Replies 15
Last reply 3/10/2016 - 11:43am

Just got my PET/CT scan done, first one since finishing the main 4 rounds of Ipi (Yervoy). I am more anxious about the results of this scan than I was the first time. The first time I got scanned I had just finished surgery for my WLE and SLNB and was still kind of in shock and confused about what everything meant. I didn't even think twice that they'd ever find anything in it. This time feels different and I guess that's because I know so much more about melanoma than I did 4 months ago. I see my oncologist Thursday morning for results.

Do scans still give those long standing NED folks anxiety? Does it ever get better, anxiety wise?

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Anonymous's picture
Replies 13
Last reply 3/10/2016 - 8:44am
Replies by: Bigdaddy5, ET-SF, _Paul_, Anonymous, Ed Williams, katie1

ET seems to be (haven't yet confirmed the exact appointment) lined up with the melanoma center at Inova Fairfax.  They are participating in a Phase III trial of seviprotimut-L (POL-103a) at that center, and ET would qualify for the study, being NED, surgically resected stage IIb.  ET also qualifies for a couple of other vaccine trials.  There are no other trials at this time for which she qualifies, given her stage.  We are trying to figure out which vaccine trial would be most promising for her to undergo.

Option 1:  Phase III seviprotimut-L trial at Inova (NCT01546571):  This vaccine, manufactured by Hong Kong-based Polynoma, was first developed in the mid 80's and has a very small body of research behind it throughout the years.  From what I'm reading, it seems to be somewhat successful at mopping up free melanoma cells in the circulatory system and especially reducing serum CYT-MAA (cytoplasmic melanoma-associated antigen).  Perhaps the CYT-MAA effect is from a reduction of tumor load and therefore shed antigens?  Although the vaccine doesn't work on everyone, it works on some, somewhat extending the duration of recurrence-free survival.  The problem with this Phase III study is that the experimental design uses a placebo control group.  I don't yet know whether they use unequal sample sizes for the experimental vs. control groups.  (Some studies will greatly diminish the size of the control group for ethical/compassionate reasons.)

Option 2: Phase I trial of GVAX, Lipson, Johns Hopkins (NCT01435499):  Compares GVAX of two strains, combining one strain with cyclophosphamide.  GVAX vaccine, developed 1993, manufactured by BioSante Pharmaceuticals, consists of whole tumor cells that have been genetically modified to secrete GM-CSF (granulocyte-macrophage colony stimulating factor).  These whole cells are first irradiated to prevent cell division.  If I understand correctly, the strategy is to use the GM-CSF to stimulate macrophages to engulf them, digest them, and express their component antigens.  I am finding no data so far as to any measure of efficacy, other than immunological findings.  But then again, I suppose that's why it's still in Phase I testing.  Lipson is trying to determine how well the drug is tolerated

Option 3: Phase II trial of CDX-1401 and poly-ICLC, with or without CDX-301, Hanks, Duke (NCT02129075).  I don't know whether this trial is still in progress, as I don't see it listed on the Duke website.  These vaccines are manufactured by Celldex.  CDX-1401 is a MAB specific to the DEC-205 antigen on dendritic cells, activating these cells against the NY-ESO-1 tumor antigen.  (I have no idea whether ET's tumor expresses this antigen.  Could this be tested?)  CDX-301 stimulates production of dendritic cells.  Poly-ICLC (mfgr, Oncovir) is a viral mimic that acts as an immunostimulant.

Any thoughts as to which of these three choices might hold the most promise for ET at her stage IIb?  Note: We have no insurance coverage that would help us with options 2 or 3.  I don't know what sorts of costs would not be covered by the research grant.  Only option 1 is conducted by physicians and a melanoma center covered under our insurance.

Thanks for any thoughts on these vaccine trials!  We continue to be hard at work learning all this stuff!  There's sooooo much to learn!

SF

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Maria C's picture
Replies 7
Last reply 3/9/2016 - 11:54pm
Replies by: Maria C, pookerpb, Polymath

Hi all - 

I'm wondering if anyone else on this board has dealt with pneumonitis as a side effect from the ipi/nivo combo, and if so, how long did it last and what did your treatment look like?

I'm 6 weeks in with this side effect after my 4th and final dose of the ipi/nivo. At first I had a CT scan of the lungs, and there was a little activity but nothing too alarming. With the hope of not going on steroids that would prolong the first maintenance (nivo) infusion, I was given antibiotics at first to see if that cleared things up, then when it didn't I was given a short burst (1 week) of steroids which helped. A week after I got off them and was scheduled for the infusion, I had shortness of breath again followed by a wait & see period of 2-3 weeks. Still not clear so I got another CT scan earlier this week which showed lots of activity, and on Monday I will have to go for a bronchoscopy to identify whether it's inflammation or infection (possibly PCP).

Has anyone else had a similar experience? I was told by the pulmonary doctor today that treatment for this can last up to 6 months, which would delay my maintenance regiment significantly ... a troubling thought ...

Thanks for any insight others can offer.

 

 

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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