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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Doug-Pepper's picture
Replies 1
Last reply 11/18/2011 - 6:43am
Replies by: MariaH

Praise the Lord! Doug had an appointment @ CCI(Clearview Cancer Center) last week. Lymph nodes, blood work, & skin all looked good. He had a clear pet scan in Aug. & will have another one in march. I am so proud of how he has been taking better care of himself. Since diagnosis we have changed our diets, added supplements, & alkaline water. I also noticed that his skin has been much softer after we put a filter on his shower head. I figure it can only help, tap water is not always the cleanest. Anyone have any thoughts on having pet scans every six months? Praying for all who are affected by this horrible disease. Thanks for all of the support, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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I had my last derm appt this week. The derms say I am good to go. They removed the moles on my back with are harder to monitor and measured moles that need to be watched. Thankfully, a derm will be on base every three months, so if anything comes up, I can ask him. Dream come true if you want to ask me. I was very hesitant about asking my fellow jarheads to examine my back!

 

With that said, I would love to have your advice on one last issue. When it comes to watching for "change"....What characterists do you use to determine whether or not a mole is ready to be taken off? Two of the four suspicious lesions are already pretty dark, but have not changed for quite some time, therefore, we have left them. So, with that said, when it comes to change in color, that might not help. But do melanomas tend to grow? Or change shape? I know the ABCD's of moles, but that does not really help because all my moles are weird. And, how long is the "in situ" process. I am hoping to catch more moles in this stage, rather than stage 1. But is that even possible.

 

Thank you all for your help during this hard time in my life. I will have my wife give you updates. In fact, she would be more than happy to give updates. She said my attitude completely changed when I started talking to you all! Jared.

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price9103's picture
Replies 6
Last reply 11/17/2011 - 8:12pm

My husband had a melanoma removed from his L cheek which was all clear around edges.  No radiation or chemo treatments.  No problem for 20 yr, Oct. 2011, after dental work, noticed a swollen neck gland, went to doctor, given antibiotic with no change,  Returned to MD wk later and sent for C-T scan showing lump in neck, ENT doctor said it was probable lymphoma.  Biopsy done and reported to be melanoma.  PET scan results show 2 spots in neck and 1 in Left Upper Lobe.   Needle biopsy done on lung growth, shows Melanoma mets.  He is 88 yr old and is good health, they are doing heart and lung studies before deciding on course of treatment.  We are awaiting results and it is slow and stressful.  Marj

 

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Hi, my husband has melanoma and we are getting conflicting opinions on radiation.  We are quickly learning there is no concensus on treatment when it comes to mel!  The brief history is my husband had a malignant mole on his back 9 years ago in 2002.  In 2002 he had a wide excision and a negative sentinel lymph node biopsy.  After 6 years of regular follow up he was let go in 2008.  This October he found a mass under his left arm-the same area as the SLNB in 2002.  On Nov 2 he had an axillary lymph node dissection.  There was only one involved node that measured 4.7cm with no extra capsulary extension.  Everything else was negative including the PET and brain CT. The surgical oncologist has a hunch that mel was missed on SLNB in 2002 and it is very possible they got it all during this surgery. The decision is ours but she thinks it would not be out of line to decline radiation due to the risk of lymphedema. We have seen a medical oncologist at Mayo and he is also very cautious about radiation.  The radiation oncologist believes radiation is worth the risk.  Any thoughts?  Mayo did recommend Leukine which we are very seriously considering.  The only other option we have found in MN is a head to head trial of IPI vs. Interferon.  We are not at all interested in Interferon and like the reduced side effects of Leukine.  Any guidance on Leukine or radiation would be greatly appreciated.

Thanks!  Julie

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I had my last derm appt this week. The derms say I am good to go. They removed the moles on my back with are harder to monitor and measured moles that need to be watched. Thankfully, a derm will be on base every three months, so if anything comes up, I can ask him. Dream come true if you want to ask me. I was very hesitant about asking my fellow jarheads to examine my back!

 

With that said, I would love to have your advice on one last issue. When it comes to watching for "change"....What characterists do you use to determine whether or not a mole is ready to be taken off? Two of the four suspicious lesions are already pretty dark, but have not changed for quite some time, therefore, we have left them. So, with that said, when it comes to change in color, that might not help. But do melanomas tend to grow? Or change shape? I know the ABCD's of moles, but that does not really help because all my moles are weird. And, how long is the "in situ" process. I am hoping to catch more moles in this stage, rather than stage 1. But is that even possible.

 

Thank you all for your help during this hard time in my life. I will have my wife give you updates. In fact, she would be more than happy to give updates. She said my attitude completely changed when I started talking to you all! Jared.

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LEEPOINTON's picture
Replies 2
Last reply 11/17/2011 - 4:01pm
Replies by: SarahS, Fen

I was diagnosed last year with Melanoma on my back. I had a wide local excision and all was fine. I went for check ups every 3 months. On the day of my 12th month check my consultant discovered a lump under my left arm. After a biopsy, yes it was back. I was diagnosed with metastatic malignant melanoma stage 3b. I had a full lymph nose disection 8 weeks ago and am now suffering with lymphodeama. I have read numerous sites, mostly giving bad vibes and bad prognosis of suffers of this type of cancer. I was wondering if there is actually any good news stories from people that have had this and years down the line have seen no reacurrance. I am only 40 years old and feel that already i am a sitting duck waiting for it to come back and there be nothing more to be done. Please please any positive stories or help would be much appreciated.

Regards Lee (stoke on trent, United Kingdom)

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Hi Tam,

Was wondering how your husband is doing on the braf/mek trial at UCLA.

Wishing you the BEST!

Carol

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cwu's picture
Replies 1
Last reply 11/17/2011 - 11:21am
Replies by: Karin L

Hi,

Has anyone participated in either the Allovectin or Oncovex trials? Allovectin is an immunotherapy injected into the tumor and Oncovex is a vaccine. Please let me know the results, side effects,etc. I want to see if either of these are viable options for dad.

Thank you.
Chau

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Good Day fellow warriors!

It's been a long time since I've posted here since I thought I wasn't going to need to again.  However, I've updated my profile with all the happenings of the past year, so if you'd like a complete update, please check that out.

Summary...I hat spots on my lungs this past April, which they scanned 3 months later and they had grown to 7mm and 12mm.  Biopsy confirmed melanoma, so Dr. Chmielowski of UCLA started me on the Yervoy treatment.  I was able to complete 3 of the 4 injections before I came down with severe colitis which landed me in the hospital from 8-11 Nov (got discharged Veteran's Day of all things).  They started me on 100mg of Prednisone which I'm not happy about, but it's made the colitis much better for now.  I've started tappering 10mg a week and I'm at 90mg now.  Needless to say, I'm not finishing the Yervoy treatment.

PET/CT scan the other day showed that the spots in my lungs have grown to 9mm and 22mm, but there are no other remarkable locations of melanoma, so at least it's not spreading to anywhere else yet.  The next steps we came up with are to remove the nodes via surgery and test them for the BRAF mutation.  If positive, I'll go on BRAF inhibitor drug post-surgery and see how things go.  I'm running this plan by my docs at MD Anderson too, just to make sure they wouldn't do anything different.

All-in-all I actually feel good, I'm eating, not quite exercising yet, but walking when I can, got good meds to help me sleep, and I'm not symptomatic from the cancer at all.

So, any comments or suggestions out there from folks on other trials that may be also promising for someone like me?  Also, we're wondering if there may even be a delayed response from the Yervoy and maybe it'll go to work later.  I'm not very hopeful about this since they have me on such high dose steroids and my immune system is just getting shot to pieces from that.

Also, I just want to say to everyone on here...keep fighting this hard, not only for yourself, but for those you love and who love you.  It's the fight in us that makes us strong, and through our strength we will have victory.  Peace.

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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Nick Maraveyias's picture
Replies 7
Last reply 11/17/2011 - 10:29am

Hello all.

Lost a 50 year old brother (in law) to melanoma a couple of months ago and now my 49 year old brother has been diagnosed 3b.  He lives in Greece. 

Docs in EU seem to not favor interferon treatment.  Recommendations are for "optional" interferon for one month, "stop if you are feeling bad" kind of thing.  My brother in law did interferon for a whole year, 5 years ago, here in the US.  Cancer came back almost one year to the day of completing interferon treatment.

 

Can anyone advise as to any recent data comparing effectiveness of interferon treatments of varied durations?

 

Thank you,

Nick

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Rick from NC's picture
Replies 14
Last reply 11/17/2011 - 7:56am

I have just reached the 20th anniversary of my diagnosis of melanona, which was Stage IV at diagnosis, with metastases to both lungs and various subcutaneous sites.  I was very fortunate to be referred to NIH where I had a complete response to IL-2 in 1992.  After several years of worrying about a recurrence, I now don't really think about recurrence.  It was a great pleasure to meet some of you at a melanoma conference in Chapel Hill, NC a couple of years ago.

I continue to read the posts on this site with great sympathy, and occasionally contribute.  I just wanted to offer myself as an example that people can have positive outcomes from even what appears to be a dire consequence.  I don't know why I did well when others don't, but I am very grateful.  My wish for my fellow warriors is for healing, in whatever way that comes, whether physical, emotional, or spritual.

 

Rick

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Charlie S's picture
Replies 2
Last reply 11/17/2011 - 7:41am
Replies by: Jackie W, Charlie S

We talked briefly  today. Brief is how to best describe his conditon right now.  But don't count him out.

Please keep him in your thoughts.

Charlie S

 

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HelperDaughter's picture
Replies 7
Last reply 11/16/2011 - 10:15pm

Hi,

We got some not so good news today.  My mom finished her IPI treatments.  December 1 is "week 20" when they supposedly do the scans that show if it's working or not.  Today, she had a brain scan that showed a new tumor in the back of her brain.  it grew in 3 months.  She had had a previous met to the brain that was zapped by SRS and is now totally gone (per same brain scan).  This second tumor is bleeding.  they don't know how big the actual tumor is because of the blood, but with blood included it is 1.5 cm in maximal dimension.  My mom had some swelling following the first SRS treatment (both tumors have been asymptomatic - she has no neurological deficits whatsoever - not even a headache).  due to the location of this new tumor (back of the brain), SRS therapy is undesirable because swelling from it could potentially affect her eyesight.  the plan is to remove the tumor and the hemorrhage surgically, then zap it with the SRS.  once the mass is removed, swelling from SRS is apparently less of an issue.   her surgeon literally told her that since it's on the surface, it'll be "a piece of cake."  But, i can't help but feeling like it's eating a piece of cake while you're going down on the Titanic, you know?

I just feel like my mom is getting the sh--ttiest bum rap around - pardon my friench.  She's braf negative, she's got brain mets (disqualifies you for trials), she has psoriasis (autoimmune disorder that can disqualify you for trials), she has visceral mets (that are actively bleeding and causing her to become anemic and require bi-weekly transfusions).  Literally in July of this year we went shopping together and she was fine - absolutely fine.  it was July, just four months ago.  now she's too tired to grocery shop.  is it the IPI or is she dying?  i know brain mets and visceral mets have like the worst prognosis around.  i just feel like we can't get a break.

I'm scared i'm never going to get to go shopping with my mom again. do you think it's OK to cry in front of her?   sorry if this is a stupid post.  i'm just so scared. 

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NYKaren's picture
Replies 6
Last reply 11/16/2011 - 9:24pm

So, I'm all hooked up, waiting for my dose of il-2.  I showed Dr. Sznol the little buggers that seem to keep popping up, his response is that I'm having a plus/minus response.  My lymph nodes no longer show up on PET, (As of 2 weeks ago, none of the intransients did either.  He did say it's not a fluke thAT i have these now "things" on my face, they're definatly part of the Melanoma. 

After I get home, he wants me to go to Dr. Wolchuk and sign the consents for their Anti-Pd1 trial with the new drug from Israel.  This way, they'll scan me and if necessary get me into that trial.  I find to be very good news and quite reassuring. 

Here they come with my dose...

talk  to you tommor.

Don't Stop Believing

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crazymom99's picture
Replies 1
Last reply 11/16/2011 - 5:52pm
Replies by: Janner

Because I rely so much on myself, rather than my derms to find a suspicious mole, I am scared that I might miss something because my first melanoma was 1X2 in diameter AND it was a mole that had not changed (I have pictures). I just had a "feeling".

I am a person with 100 + funny looking moles. Several are greater than 6mm, but most are smaller. Derms seem to look at the bigger ones, but now, I worried I need to take off all my moles. I know, its unrealistic, but I do not know what else to do?

Has anyone had a melanoma that small before?

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