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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gcooperbl's picture
Replies 5
Last reply 2/3/2016 - 8:57pm

Hi all

 

just a bit of advice needed, my dad had a turn / dizzy spell / potential seizure he is on lower dose of steroids and has brain mets. Will the doctor slow down his immunotherapy? He got first cycle last week and not to today was fine. Due to get his second on the 11th feb.....anyone been through this? Any positive news for brain mets and pembro? 

 

G

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I am getting opinions on treatment for a 1.3 mm melanoma on my leg that was removed and microscopic cells were found in 1 of 2 sentinel lymph nodes that were removed in my groin.  My surgein is recommending all the lymph nodes be removed in that area - I am deathly afraid of getting lymphodema.  It seems some people wait and see and then end up doing it.  Please tell me if you had it, did they find melanoma in your other lymph nodes, do you have lymphodema?  Is it as bad as I think - should I do it?  Thank you to all - I have been so humbled by this experience that has changed my life 3 weeks ago,  I am blown away by the generosity and kindness of strangers to help each other.

 

God Bless you ALL!!!!!

XOXO

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jenny22's picture
Replies 13
Last reply 2/3/2016 - 12:34pm

Hi to everyone,

Many of you have responded in the past to some of my posted regarding treatment options for stage 3B......

I now feel like I have a decision to make and no idea how i am going to make it.

Quick recap: Recurrent 3B.....2 intransit/local recurrences....one 11/14 and one 11/15....

Vaccine Trial Spring 2015 after 1 st recurrence

Just completed  (1/12/16)  high dose radiation.....5 treatments...by the way, side effects VERY mild and now bad.....

Radiation for local control...thought being since both recurrences were in the same place, maybe this would do it ...but of course we know it had no benefit for distant spread.

So of course my main concern at this point is what is the best option to prevent further recurrence and obvously distant mets? 

Current MED ONC-

NYU- ANNA Pavlcik- whom I adore- will not give me IPI due to microscopic colitis from Vaccine trail...it reseovled on its won and never needed steroids, but as a result she will not give IPI even at 3mg.....she is reccomending Leukine now that I have compelted radiation.

MSK- Mike Postow- not inclined to offer IPI......

U PENN- I met with Lynn Shcucter last week...she feels IPI at 3 mg is the way to go, and feels my risk of ANOTHER recurrence is 50% or better...including distant mets....Pavlick never acts as if she thinks its quite that doom and gloom. Schucter seems to think she can manage any side effects and at the first sign of anything we would stop it...even if i only got one dose in, or maybe would get all 4.....

She was kind enough to call Dr. Pavlick and discuss with her....to explain her point of view......and mine...

Dr. Schucter knows that i am leaning towards doing something more aggressive.....I cant help but think that IF this does come back that  i wont be able to live with myself......wondering why i didnt do something more agressive than leukine when i had the chance.  (BUT i would hate to leave dr. Pavlick)

I know some will say it has almost the same chance of working if it does come back, but i think that is game changer...then having to live witht knowing you are now stage IV, something all of us hope to prevent.

I am scheduled to see Dr. Pavlick on Monday.....Dr. Schucter gave me her thoughts on waht i should say to dr. pavlick...

Just curious to hear anyone else's  opinions....TOP DOCs with completely different opinions.

Schcuter said to me" I hate when we put patients in this position"...no wrong answer, but all differing opinions.

Thoughts friends?

THANKS!

Jenny

 

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Anonymous's picture
Anonymous
Replies 0

Join 2000 patients and caregivers for a great/fun event!  Go to  http://melanomainternational.org/

 
 

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Totally Blessed's picture
Replies 2
Last reply 2/3/2016 - 12:30am
Replies by: ldub, Totally Blessed

My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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mybelle's picture
Replies 16
Last reply 2/2/2016 - 7:22pm

Looking for some feedback from other stage IIIA patients who are making the decision to watch and wait or try yervoy. Son diagnosed with IIIA, 1.1mm on right arm, micro one node, 23 other nodes negative. He is leaning more toward boosting his immune system naturally through healthy living due to the side effects of yervoy. Appreciate hearing from other patients in a similar situation.

mybelle

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Nanners10's picture
Replies 3
Last reply 2/2/2016 - 7:02pm
Replies by: WithinMySkin, Anonymous, Nanners10

Hi all,

Just looking for any advice that anyone can give. I had a CT scan (was experiencing some chest pain) and the results were so obscure. My dr. wants to follow up with a pet scan or another CT scan in a couple of months to see the difference. He didn't really go into details as to what causes (other than melanoma) these items and I was wondering if anyone has run into these before and if they turned out to be something or nothing. I know that maybe I am not giving enough info but don't have a copy of my scan yet but am stressing out. The terminology in question is:

-thickening of the pleural wall on the right side 

-abdominal stranding between the liver and the kidney

I haven't ever even heard of abdominal stranding and don't know how or what it relates to. Can't seem to find much on a google search either.

They are both listed as incidental findings as the scan did not include the whole abdominal/pelvic area it was mainly a scan on the lungs.

Any thoughts would be greatly appreciated. I know that another test is the only definitive way to determine what's going on but we all spend enough time obsessing over our reports that I thought this would be worth a try.

Thanks,

Nancy

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My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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Anonymous's picture
Anonymous
Replies 11
Last reply 2/2/2016 - 4:14am
Replies by: Scooby123, melj, gcooperbl

After reading posts for a few months and finding many helpful, I thought I should contribute, hence the post. I'm a Brit living in the UK, my first melanoma was in 1995. A year later, following a resection of lymph node mets in my groin I joined a trial of Cancervax at JWCI in Santa Monica. Although overall the trial was unsuccessful, it seemed to work for me. I was NED for 18 years before presenting in December 2014 with two new primaries and a local recurrence on my flank. During 2015 I had 7 subcutaneous mets excised at the Royal Marsden Hospial in London. My CT scan earlier this month showed progression to lymph nodes in my neck and chest as well as a couple more subcutaneous mets. On January 20th I started on Keytruda. The first week I had negligible side effects but the last few days I've had headaches, fatigue and night sweats. All manageable. I had the option of Yervoy and Opdivo but chose Keytruda because I have a low tumour burden and normal ldh. The more severe side effects of ipi put me off the combo therapy but if I don't respond to Keytruda that could be the next step. 

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ashleyc's picture
Replies 5
Last reply 2/1/2016 - 3:47pm
Replies by: mary1233, ashleyc, Kim K

Father has mucosal melanoma. Had a recurrence after four years from diagnosis. It was removed surgically and now our options are watch and wait or choosing chemo with interferon or Cisplatin and Temozolomide. Anyone else been faced with this decision have any advice? I did ask about ipi but was told there was only one study using it as adjuvant therapy, the dose seemed too high and risky, and it was for those in stage III with a positive lymph node. So oncologist made it sound like it wasn't an option. Thank you to all in advance. 

ashley chavez

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grahamtosh's picture
Replies 10
Last reply 2/1/2016 - 2:48am
Replies by: Anonymous, grahamtosh, Janner

Hi  All

 

i have a history of 2 melanoma on my legs - December 2014 excised . 

Yesterday my dermatologist removed 17 suspicious looking Nevi after looking at them with Mole Mate . I have been told by lots of people that this is not common practice ? when questioned , My dermatologist refers to a ' film' that masks her seeing melanoma clearly on my body that is why she just excises all  . Does anyone know about this type of 'film ' pls , what is the medical term / explanation . 

 

 . I got second opinion ,they said remove only 5 out of the 17. He said he only excises what looks worrying to the naked eye , he said suspected melanoma are very obvious and you see them with the naked eye / dermis cope very easily ! I then went back to original Dermo who wants to remove the 17 and asked her to explain. 

she said all 17 showed ABCD but not E.  With smudgy outlines . She said she finds my skin very difficult to read as there is a ' film ' which hinders masks seeing the melanoma , so she suspects them all ??? Is that possible . Does anyone have any medical terminology reference of this ? ? 

 

She has scared me sufficiently so I then went ahead and she removed all 17 yesterday wide excision and I am now awaiting biopsy results . 

 

thabks very much 

 

 

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ecc26's picture
Replies 16
Last reply 1/31/2016 - 9:42pm

I know I've been absent from this board for a long time, but I find myself apparently failing the Merk PD-1 I started a year and a half or so ago. I won't go into a lot of details about my past as you can find my other posts on here by doing a search

I had 2 masses in my chest that I underwent radiation for in the fall and those look great at this point, but I also had 5 new brain mets (that turned into 14 by the time I got up to the center for gamma knife). I've got an enlarged lymph node in my neck and after yesterday's scan results apparently a new tumor in my spleen and one near the cranial pole of one of my adrenal glands. Since they treated 14 with gamma knife instead of 5, my medical oncologist is reserving judgement on that until the scans get up to that doctor, but there were still a whole bunch on the MRI. Hopefullly I'll have an answer about which were treated and (hopefully) responding. 

I've been fighting off my oncologist's suggestion that I switch to the PD-1/Ipi combo because I remember well how I felt on Ipi and I've had no side effects on on the PD-1 over the last year and a half. I should also note that if not for the scans, the only tumor I'd have known about is the lymph node in my neck- for which I was hoping to possibly use the recently approved Herpes vectored vaccine (since it needs to be injected directly into the tumor). But I think I've run out of time to stave off changing therapies, especially if the MRI shows no improvement or worsening. I've been spending time today looking for trials and other possibilities. 

The other possibility my oncologist mentioned was a vaccine trial happening in Buffalo, NY, but he didn't seem to be that excited about it- probably because the melanoma specialist I used to see up there has moved out of the area and is no longer there, but also because vaccines in the past have not really panned out very well. I'm not sure he has as much faith in the the department that's there now, and he did call my former specialist to get his opinion- who suggested the combo therapy. He has also contacted Dana Farber (Boston, MA) and they have not implemented that for their patients, despite having run trials for it at their hospital. 

Does anyone on here have any other suggestions? I'm on a bit of a time crunch to get it figured out as he'll be looking for an answer likely tomorrow evening after I see the radiation oncologist. I'm not critical (yet) but know myself well enough to know not to hold off too long. I don't want to give up the no side-effects if I don't have to, but I don't want to waste time on a vaccine trial either. I know there's no way to tell if it will work or not, but I have no idea (I'll be reading about it this afternoon) what is involved with the trial or if I'd even qualify for it. Any help/suggestions would be greatly appreciated

 

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MaryD's picture
Replies 2
Last reply 1/31/2016 - 4:59pm
Replies by: Bubbles, Jubes

I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

Thank you,

Mary

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grahamtosh's picture
Replies 10
Last reply 1/31/2016 - 12:50am
Replies by: grahamtosh, Janner, Anonymous, WithinMySkin

Hi 

hope there's a qualified person that can very kindly advise 

I had 2 melanomas removed last year. So now am wary  and listen to the doc but not too sure  . I have a back covered in what look like atypical Nevi. Dermo has done mole mapping and says she wants to excise  17 atypical moles with margins , from my back . ( they will of course then go for biopsy ). Mainly due to diameter but some smaller ones also due to my age 46 . 

Do I need all 17 excised ? Is this a worthwhile precaution ?

thanks for your advice .

 

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gcooperbl's picture
Replies 6
Last reply 1/30/2016 - 5:56pm

my dad has stage 4 melanoma in brain lungs and liver......he has been offered pembro but only one dose? we cant understand why as it is supposed to take 3-4 doses min? 

he is braf negative 

his cancer in liver is getting worse and needs treated asap, he is due to start pembro next week, and he is on steroids though coming off them.

any advice? he needs the best treatment? any other drugs out there that could help? or any more tests we could do?

 

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