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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My husband had what doctors thought was a cyst removed on his leg in late may. Two weeks later he was told it may be melanoma!
We were referred to a surgical oncologist at MGH who removed the tumor and was confident the margins were clear ( he did no
Lymph node testing). The tumor was large and thick and after meeting with a melanoma specialist it was determined to be a melanoma
With an unknown primary. He had PET and CT scans all were clear.. he tested BRaf negative. They recommended either interferon or a clinical
Trial currently going on for high dose yervoy (10 mg?) We got a second opinion at Dana farber and they feel the same. Dana just repeated all scans
And a brain MRI -NED. The high dose Yervoy trial has been having a few incidence of bad side effects (colostomy-even 2 deaths!) we are starting to have our doubts about trial. We know melanoma is a terrible disease but none of these treatments seem to be a cure. Given no recurrence, or evidence of disease we are nervous about quality of life. We know interferon is no picnic but, we are scared of the high dose trial!! He is not eligible for the lower dose because he has no identifiable tumors or mets. Is anyone out there in the same predicament?? He has to start the trial on Tuesday so any info would be much appreciated!!!!

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/8/2013 - 3:58pm
JerryfromFauq's picture
Replies 7
Last reply 9/7/2013 - 12:54am

Need help on a question. Several people on several sites have been asking about possible "re-occurrences" in the scar tissue/area of the removal of a primary.   I would like to hear about the timing of such re-occurrences in people that have had such occur.

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

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Dave from Ormond's picture
Replies 1
Last reply 9/6/2013 - 12:46pm
Replies by: Anonymous

I have Stage IV Melanoma that's not in any organs but is metastatic and has spread from the in transit path. It's mainly in the area between my right armpit and waistline.  

Because my Melanoma has moved, my two Doctors, the Surgical and Medical Oncologists, decided that the best treatment for me was four 200 mg doses of Yervoy.  I had my first dose yesterday.  

I haven't really had any symptoms yet.  I did feel a little tired but for whatever reason I couldn't actually fall asleep until about 3 a.m..  The only other thing I've noticed is that I feel a little light headed.  Not dizzy, just kind of spacey. In fact, when I went to go to work this morning I almost walked out the door without my shoes on!

So my question is whether or not any other 1st dosers had the light headed feeling?  I haven't seen anything stating that this is a normal after effect. 

Thanks.

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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Replies by: blden2186

I'm trying to stay calm after my 9th day of waiting to hear back on biopsy results from a flat, light brown oval mark a little larger than an eraser on the side of my nose by my eye.  It's been there for a couple of years, but since I cover it with makeup everyday, I haven't noticed it much.  Then about 2 weeks ago I was rubbing my eyes after waking up in the morning and could feel it peeling off - just the mole, no area of skin around it and I haven't been in the sun lately.  It then was just raw and bleeding and didn't seem to scab over, so that's when I went it to have it checked.  I had a Clark II .2mm malignant melanoma removed from my upper left back in 10/2010, so I'm a little paranoid that this could be melanoma again.  And even if it's not melanoma, I'm assuming whatever it is it will have to be removed.  The doctor mentioned that I'd most likely need MOHS surgery - any advice here?

Should I be worried that the results are taking so long?

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cindersma2's picture
Replies 4
Last reply 9/6/2013 - 5:22pm

hi i was newly diagnosed with melanoma. i am 37 with 3 amazing kids and a wonderful husband, along with a supportive extended family. i am very blessed. i wanted to thank everyone on here for being so brave and sharing there stories, it has really helped me this past month. i was diagnosed aug. 2 with a changing mole on my left thigh. it was 2.03 indepth, clarks level 4 with some shallow ulceration. ihad my second surgery sept.4 the wide excision and lymphnods removed to be tested. i am keeping my fingers crossed for clear result.

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Owl's picture
Replies 4
Last reply 9/10/2013 - 1:30pm
Replies by: bj63, joycedixon, Owl, Tina D

Hello,

I have a question about Zelboraf and pain as a side effect. My husband is taking Z for more than 8 months, 2x3 pills. He's always had manageable side effects. For some weeks now he is complaining about more and more pain (joint pain, skin pain as soon as he slightly bumps into something, shoulder pain) and weakness in his muscles. He has tried several pain reliefs but nothing really helped he said. He has also been checked about possible bone mets, luckily nothing was found. I am searching now for something that can help him. He doesn't sleep properly and the pain makes him more and more kind of depressive. Does anyone have experiences with alternative pain relief, accupuncture or anything else? Is it worth trying or should he ask for stronger pain relief medication?

The situation at the moment is getting more and more difficult as his constitution is influencing our whole family life. We are so happy that he is such a good responder on Z but currently we can not enjoy it.

Thank you,

Jenny

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blissful_creations's picture
Replies 3
Last reply 9/5/2013 - 7:45am
Replies by: Tina D, POW, Swanee

I have been following this forum since I was diagnosed in April 2012 with stage 3b at age 25 Since I have had no reoccurrence since then other an atypical mole. I just want to hear some long term survivors because I am having some scanxiety. My last treatment for a clinical trial of ippi with 10 mg is in 3 weeks. (Praise God). I have enjoyed 18 months of relief yet hesitation. Such a contradiction. Anyone else have this dilemma with my complex of being scared yet enjoying the moment especially with my 5 and 2 year old.

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JoshF's picture
Replies 2
Last reply 9/4/2013 - 5:16pm
Replies by: JoshF, Janner

Hi All...I have a goofy question but one that is nagging at me. I posted just a few days ago about abump within scar and a possible recurrence vs. scar tissue etc... Anyway, I see doc on Friday but I'm tugging a IF it is melanoma (I know...don't go there...but many of us know its hard not to), and I have to have re-excision, will there be enough tissue to get clear margins? I already had a big chunk taken from my cheek from the first wdie excision. Would this make it unresectable? Just wondering what options would be....leaning towards lump not being melanoma :)

 

Josh

Let's work for better treatments....for a cure!!!!

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lrkg1234's picture
Replies 11
Last reply 9/5/2013 - 8:45pm

Hello all. 

Thanks for the endless support and advice. This board was so helpful in learning and planning for Scott's treatments as well as emotional support.

Scott passed on August 30th, Friday AM at 10 AM.  I was there with him and it was OK.  Peaceful and easy.  He was not afraid and he was accepting of the situation.  I know he is free now.

He was so strong, always working towards the next treatment, never complaining.  But the cancer had taken it's toll and it was time for him to be rid of that body.  We will all miss him dearly, but I know he is much happier now and that we will meet again.

Keep up the fight all.  As time goes on things get much better.  Better treatments, better chances. 

 

God Bless, Lisa (wife of Scott)

 

Below is a link to his online memorial scott-alan-gause.forevermissed.com

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DeniseK's picture
Replies 14
Last reply 9/21/2013 - 5:42pm

OK, so most of you know my story.   I get my 4th and final infusion of Yervoy day after tomorrow and I am taking Dabrafenib full dose.

Zelboraf quit working for me around the 6th month.  

Anyway, I know my melanoma is getting worse.  I can feel subq's on my neck and back that are new.  The sub q on my arm is getting pretty big and I am going to talk to my doctor about removing it due to pain.  I am not sure if I can have surgery while on the medication.  I can quit the Dab cuz it's not working anyway but what about Ipi?  

Also I don't think I have the time for Ipi to kick in.  I can feel my body getting weaker and my back and chest are hurting more and more.  I know I only have a short time.  So I haven't got an MRI yet to see if my brain is stable but I have a feeling it's not.  I'm really hoping I'm wrong but I am having dizzy spells and pains in my head.  My question is what is left for me if I can't get into the PD-1 trial?  I was thinking temodar or IL2?  Are there any other options?  Is IL2 the one you have to go to the hospital for?  Is it Interleukin combined with what?  I am completely scared at this point and need some help.

Thanks everyone

Denise

 

 

 

 

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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purley123's picture
Replies 10
Last reply 6/28/2015 - 11:56am
Replies by: Rcmcd09, purley123, Janner, Anonymous, casagrayson

Hey guys.

About three weeks ago i had two suspicious moles removed from my back and front. Carrying on to this present day, I felt a tingling sensation on the side of my foot. At first i thought it was nothing as this was a common occurace for the past 1-2 months, but when i closely investigated it, I was surprised to see a dark mole there (the tingling sensation was at the exact same place as the mole).

So i ended up researching on the internet (worst thing you can do) and found out that a tingling/burning sensation is an early symptom of Melanoma. As you can guess, I'm terrified. I don't know if the Melanoma has spread if it's changed or anything.

I have a dermatologist appointment booked previously for the 27th of september.. But i don't know how I'm going to cope till then.

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priyashah38's picture
Replies 2
Last reply 9/3/2013 - 2:07pm
Replies by: Janner, casagrayson

 i have a greyish black line running across the length of my left thumb... very painful... slight swelling ...

This has occured twice in the past also. After a few days, the line diappears and pain subsides. But the problem re-occurs every few months...

can anyone guide me what it could be?

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JoshF's picture
Replies 4
Last reply 9/3/2013 - 5:14pm
Replies by: JoshF, Tina D, MattF

It's been 2.5 years since diagnosis. To get to the point, I had follow appt this past Friday. All good! Well this nothing I was rubbing scar on face and when I "scrunched" it during a yawn I felt something odd. Needless to say I felt around but can't really feel anything unless I scrunch my face or put thumb on inside of my cheek in mouth and forefinger on scar. There it was a bump maybe the size of a pencil eraser. My heart sunk! I was just at oncologist! She felt nothing! I know everyone will say go get it checked...which of course I plan on doing right away.

I know it can be scar tissue and I have no idea how long it's been there. I know it can be recurrence. Blood work was fine...LDH was normal and thou thorough exam just days ago by a melanoma specialist! I'm guessing its 50/50 chance of recurrence and knowing nature of this cancer I'm feeling pessimistic. Anyone have any experience or knowledge on this? Would it be local recurrence? Would I need another SNLB? Anxiety is killing me!

Josh

Let's work for better treatments....for a cure!!!!

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MattF's picture
Replies 2
Last reply 9/2/2013 - 10:42pm
Replies by: MattF, Janner

So I'm trying to find the answer and i'm not sure there is just one or if there may actually be seeral depending on who you ask. please let me know if you have a thought or a fact etc.

I was diagnosed through FNA biopsy 2 weeks ago Metastatic melanoma Salivary Gland...old primary was 11 months ago at base of ear.

1. Is Local Recurrence considered within 2 cm of original primary surgical scar...AND more importantly is it considered only CUTANEOUS? or could it be a lump/mass under the skin?

2. Is in transit considered outside 2 cm but before nodal basin...AND more importantly is it considered only CUTANEOUS? or can it be lump/mass under the skin?

I guess im trying to analyze what I have going on. I have actually seen some sites that call in transit and local Recurrence as CUTANEOUS and anything under the skin as just metastatic. The doctors called it a mass within the salivary gland that is positive for metastatic melanoma. But the actual lump is about 2.5 cm from my original primary...and i'm not sure if there are nodes involved also...really just wondering where i stand 

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