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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AlisonC's picture
Replies 6
Last reply 11/19/2011 - 1:59pm
Replies by: Lisa13, lhaley, fgilbert63

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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AlisonC's picture
Replies 1
Last reply 11/19/2011 - 10:02am
Replies by: Lisa13

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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joy_'s picture
Replies 10
Last reply 11/19/2011 - 9:59am
Replies by: joy_, DonW, Anonymous, LynnLuc, lhaley, Janner, bradcope1

Hi everyone.  My husband and I have had BCBS (self-pay) insurance for years.  He was orginally diagnosed with melanoma in 2007 with a recurrance in 2010 and is currently NED.  BCBS has now priced us out.  We cannot afford the $1200/month payment any longer.  I have been told by various people that if we lose our current coverage, we will not be able to get future coverage or that no other insurance company will take us with his previous melanoma diagnosis.  Does anyone know if this is infact true or if we have any other options at all.

Thanks in advance for any insight or advice.

All the best,

Tracy

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emilypen's picture
Replies 8
Last reply 11/19/2011 - 1:37am

Hi All,

So after fighting this beast for 4 years it seems we're at the end of the line.

My husband has been through; Interferon, Dacarbazine, P13k/Mek, Surgery with Radiation, Roche Braf, more radiation + WBR,  IPI and now Carbo/Taxol.

After the first treatment of Carbo/Taxol his sub q's cleared really quickly leading us to wonder if it was a combined response to IPI and chemo, but a 5 week wait for the 2nd chemo infusion led to increased pain and some sub q's popping back up. Finally his bloodwork was satisfactory and he got the 2nd chemo last week. It's doesn't seem to be working as fast this time around.

Meanwhile he's a little confused at times, nodding off throughout the day, really weak and not retaining much in his memory.

Based on his last MRI's to check his spine and brain ( last week) his brain mets are skrinking and no new ones have popped up, but the mel is pushing on his spine in places and is directly in his spinal canal as well.

So he starts more pallative radiation this week. 

He doesn't seem to have registered that the doctor told him he has maybe months to live, ( that was 5 weeks ago) which I am fine with! And I am hoping he makes it to the birth of our first child in late Feb.

We're lucky in many ways, i don't have to work right now so I can take care of him, his work has a 2 year full salary disability plan and covers all medical costs that our Canadian system may not ( like prescriptions) we have a great family support system. Home care when needed, and the morphine takes care of most of his pain.

 

I really hope that the carbo/taxol works and helps get the tumour burden under control so that he can get strong enough for another clinical trial in the new year, right now his doctors say he won't qualify for anything based on his health.

What I'd like input on is how does this end? I'm not trying to be negative just want to know what to look out for.

Sometimes i think we'll go to bed one night and when i wake up, he won't. 

I've looked on the web and can't really find anything about end of life signs other that the couple of hours right before if any one has info to share that would be much appreciated.

 

thanks,

Emily

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Webinar November 28

1 pm (EST)

 

Therapies for Melanoma of the Eye 

Richard D. Carvajal, MD

caravjal

 

Dr. Carvajal is a medical oncologist at Memorial Sloan Kettering, with a special interest in the treatment of melanoma and sarcoma. His research is focused on the development of new targeted drugs and immunologic therapy against these diseases, and currently he is researching therapies for melanoma of the eye. He received his M.D. from New York University with a fellowship at Memorial Sloan Kettering.

 

Please email all questions for the doctor to: cpoole@melanomainternational.org by November 25, 2011

 

System Requirements

PC-based attendees

Required: Windows® 7, Vista, XP or 2003 Server

 

Macintosh®-based attendees

Required: Mac OS® X 10.5 or newer

 

Space is limited.

Reserve your Webinar seat now at:

https://www1.gotomeeting.com/register/889341536

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Wetterhorn's picture
Replies 3
Last reply 11/18/2011 - 4:50pm

Hi all,

Been a little while since I have posted, just thought I would give a quick update. I started Yervoy in July for a small liver met, about 5mm. I got through 3 treatments before experiencing severe headaches and low energy. Brain and Pituitary MRIs showed no evidence of disease, but docs thought the yervoy caused my system to attack pituitary and thyroid, so I was put on prednisone and thyroid medication. Turns out, thyroid levels and adrenal levels came back to normal after I stopped taking medication and I felt fine for a few weeks. 

Then, about a month ago, I began to feel quite nauseous almost on a daily basis. Some days worse than others. I called docs at Sloan and they didn't seem too concerned. It continues to linger however.

Has anyone else experienced fairly severe nausea after Yervoy? Just wondering if I should more concerned.

My lesion did not grow at all since it was originally detected, so at least that was good.

Thanks

Wetterhorn

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Lisa13's picture
Replies 3
Last reply 11/18/2011 - 2:23pm
Replies by: kylez, momof2kids, Angela C

2 days ago was my gamma knife on 2 brain tumours.  Although the procedure was 1 hour and 20 minutes, I got through it okay with lots of anxiety meds!

Anyway, I've never had symptoms from the one brain met which was about 2.5 cm - the other 7mm.  The radiologist even said this was definately abonormal not to have symptoms, but it's a remarkable thing. Anyway, today, I have some slight pain around the area where my tumour would be and around the spots where the screws were. Would this slight pain be normal in the area of the tumour?  Maybe it's doing something right now that it wasn't doing lately, so it feels kind of strange.  I don't need pain killers so I'm okay - it's just a weird quick pain.  Anybody experience pain or sensations after gamma knife??  The pain comes on the top of my head, but my main tumour is deep down in the brain, so maybe it's pain from the radiation, plus screw holes in my head.

Any ideas, support, etc??

Lisa

Many impossible things have been accomplished for those who refuse to quit

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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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