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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casagrayson's picture
Replies 1
Last reply 7/8/2018 - 10:58am
Replies by: Anonymous

Has anyone here experienced perineural mets in the brain?

Strength and Courage,

Susan

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/12/2018 - 6:32pm
Replies by: Bubbles, Anonymous, ed williams

I am a physician and woke up this morning with a new dark nevus on my face that was NOT THERE last night.  there is nothing else it could be besides melanoma. it is not large but it must be melanoma and the sudden appearance makes me concerned about rate of growth and invasiveness.  I am a bit distraught about the fact it is saturday and it will be at least until Tuesday before I can get this taken off, and that with pulling out my professional courtesy card.  I think I just need some reassurance that a few days won't make a difference, even with how suddenly this appeared.

thanks!

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/16/2018 - 12:10am

Hi Everyone:

I would greatly appreciate any input to my decision making.  I currently go to UCSF for all of my treatment and see a melanoma oncologist.  I went to MD Anderson for a second opinion and I am thinking about having my treatment at MD.  UCSF is a 4.5 hour drive in the car with no traffic.  Plus everything is so expensive from the parking to the hotels.  MD Anderson is around 6 hours by plane.  I would be able to have my infusions at home instead of driving every 3 weeks to SF.  I would go to MD for scans and anything else that is needed.  My dilemma would be the oncologist where I live is not a melanoma oncologist.  Also, I am concerned about the distance and the time it would take  to get to MD if my diease would progress.  One thought is I could cross that bridge if it happens. I am currently stage IV and doing very well on keytruda.  If you are in a similar situation could you please provide some input.  Good, bad and indifferent.  I really want to make sure I am making good choices in my care.

Thanks 

Happyfeet123

 

 

 

 

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Gene_S's picture
Replies 10
Last reply 7/9/2018 - 11:52pm

July is my 6th Year Anniversary of being NED.

Started at Stage 3b with a 10.5 mm diagnosis in Jan. 2008, then after 4 more surgeries I had progressed to Stage 4 in Oct. 2010.  I had an unresectable lesion at the C1 - C2 spinal area, lesions in the lungs and the liver.  I went into a clinical trial for Ipi (Yervoy) 10 mg/kg and GMCSF (self injections for 14 days then 7 days off.  I did the initial 12 weeks of every 3 weeks of both drugs and then went into maintenance doses of Ipi every 12 weeks but stayed on the GMCSF with the 14 days of injections and 7 days off.  In July 2012 became NED and remained on the maintenance doses until Dec. 2013.

If you would like to read more about my journey you can read my profile.

Gene

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

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It has been on my bucket list to take my family on a cruise to Alaska.  So 11 of us (2 balconies, 2 inside cabins) took a a 10 day roundtrip cruise from San Francisco to Alaska. The sun had not been out on the previous cruise but t came out for us!  As we were sailing under the Gold Gate Bridge on the top forward deck of the Grand Princess, it was a AH-AH moment!  The sun was out, people  up on the bridge waving down at us, the Captain blasting his horn, cruise director making his announcements-and I am jumping for joy.  Thanking God I was physically able to do this with my family.  I had cashed in my chips (excuse the pun ha) but it was worth it to take my family.  A year ago I did not think I would be here to go with them.  I stayed in bed one day when i caught a little sinus thing, napping and watching tv.  The rest of them time i was on the go with them.  Even saw a mama bear and twin cubs by Mendenhall Glacier, Juneau. 

I am thankful for this forum, and I always quoting to others what I have learned from all of you.  I am at Kaiser, Woodland Hills every two weeks for treatment and monthly for doctor visit.  After over a year of this you start to talk to other patients, suffering from the same monster in all different forms.  I did meet a man who wanted to remain unnamed who was diagnosed over a year ago with the same diseases and he is NED.  Still having Opdivo I think once a month for him now.   And you get to know all the oncology nurses by name.  Such wonderful caring people.  

Again I am as always grateful to hear your reports and your advise.  

Sharon - Simi Valley, CA 

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BrianP's picture
Replies 6
Last reply 7/13/2018 - 11:29pm
Replies by: BrianP, mrsaxde, ed williams

This is a good summary of the trial I did in December 2016.  Unfortunately not recruiting now but hopefully will see it again in the future, maybe in some type of combination trial.

https://www.mdanderson.org/publications/cancer-frontline/2018/06/pioneer...

 

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Hello all.... 4 years ago I had what I was almost sure was a cancerous mole removed from my back.  It turned out it was severely dysplastic and I had a wide excision done.  A month later I had another removed, this one moderately dysplastic, another wide excision. A month later another mole from my stomach came back normal. Since then I’ve been going to the dermatologist every 6 months.  I’ve had a mole on my leg that’s been there forever.  It was dark, about 3mm wide and hadn’t changed.  No bleeding or itching, well defined borders, one half the same as the other.  Well, my dr said let’s remove it so we don’t have to worry about it.  Now, going through the waiting period is again brutal.  He said 90 percent chance it’s nothing, but now I’m wishing I had left it and monitored it instead of sitting here worrying.  

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skousal's picture
Replies 4
Last reply 7/11/2018 - 4:39pm

Hello everyone, 

I wanted to see if anyone had personal expereince of getting pregnant during remission. I have heard mixed things from my onocologist, but I just found out I'm pregnant. I had stage 3a, and I am about 1 year and 8 months in remission. I only had surgery, no adjunct therapy. My last scan was June 1st with no evidence of disease. Any personal stories or expereinces would be greatly appreciated. Thanks!

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Coragirl's picture
Replies 2
Last reply 7/11/2018 - 3:19pm

Hi all, I hope everyone is enjoying summer. My husband just had his third infusion of Opdivo yesterday. He has noticed for the past month or so that he feels cold. I noticed that his hands are always cold now, he always had warm hands even in winter! Has anyone else experienced feeling cold? As far as side effects go its really not a big deal, I'm just curious to see if any of you have had this. Thank you! 

Amie Taylor

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Fortes's picture
Replies 1
Last reply 7/6/2018 - 2:09pm
Replies by: Janner

When I was pregnant with my little one (she is 18months now ) I noticed a new mole that got bigger within few months . Although this mole was very tiny (4mm) . It remained the same size for the past year. No irregularities, one colour and circle.

2 months ago I was at the dermatologist for another reason with my dad. I decided to show the mole to her . She said it looks fine but I think you should remove it . Fast forward 14 days after WLE received a call saying That it’s melanoma in Situ and to go for 2nd wle  . 

I couldnt believe that tiny little spot could have killed me . I’m only 30.

report said;”sections show asymmetrical proliferation of atypical melanocytes. Arranged in nests in the epidermis and single Infiltritive cells. No evidence of dermal invasion. diagnosis melanoma in situ.”

dermatologist explained that I should not worry it’s completely removed and to go for check ups every 6 months . 

The problem I can’t stop thinking and reading on the internet that I’m at risk for other melanomas, for breast or pancreatic or other cancers. I read about a link of other cancers with melanoma that I’m not sure if it’s because of the BRCA gene. I have no family history of melanoma or other cancers. I’m terrified and not sure if I’m over reacting or not. I know that insitu is great and should be thankful but my anxiety is not cooperating,  i don’t know what type of melanoma it was and of it was sun related or not. Could it be that it was overdiagnosed? 

Thank you for your time reading my long question 

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wendywjj's picture
Replies 2
Last reply 7/13/2018 - 11:46pm
Replies by: BrianP, wendywjj

I am a daughter and caregiver from China. My mum(53) was diagnosed with mucosal melanoma last October, she had a surgery with clean margin to remove the tumor but it came back two months ago and we are under immunotherapy ( Nivolumab +Ipilimumab ) now.

Since my mum has low TMB and PD-L1 expression, there are high chances that the immunotherapy would not work for her. In fact, in the first one month treatment the liver mestastisis grew so quickly that we need to have surgery again to remove that. That is why now I want to search for suitable clinical trial for my mum globally.

Researching on clinical trials now, but there seems a lot of trials in process. How is your experience with those trials? Do you have any recommending trials that eligible for someone not respond to immunotherapy combo?

Thanks!!

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happyfeet123's picture
Replies 3
Last reply 7/6/2018 - 8:20pm

Hi Everyone:

I went to MD Anderson recently for a second opinion and possibly having my treatment there.  Dr, Tawbi would like me to have a brain mri and an mri to my leg before coming up with a treatment plan.   My right leg is the primary tumor and the left leg is showing new metabolic energy in the last two pet scans,  My current oncologist stated she does not believe it is melanoma but agreed after further discussions to perform a fine needle biospy.  I wanted to have a second opionion first. MD Anderson did not find anything on the ultrasound and this is why I am having an mri to the leg.   He did say I could have my keytruda infusions where I live and have my pet scans and mri every 3 months at MD Anderson.  I am currently being treated at UCSF every 3 weeks.  It takes about 6 hours to travel to Houston from where I live by plane and 4 1/2 hours to UCSF by car.  I would not have access to a melanoma oncologist where I live.  It would be a oncologist who has treated patients for melanoma but that is not his speciality.  I am considering this treatment plan vs going to SF every 3 weeks.  I have some concerns about the oncologist at home not being a melanoma oncologist and asking for any input from the group.  I want to think this through and make a good decision.   Your thoughts would be greatly appreciated!

Also, does anyone have any experience with Dr Tawbi or MD Anderson and willing to share their experiences.

 

Thanks

Happyfeet123

 

 

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Anonymous's picture
Replies 9
Last reply 7/9/2018 - 10:15am
Replies by: Anonymous, Sharon93065, VinceMart, marta010, Bubbles, Mat

Hi guys,

My father, a very active 45 year old, was recently diagnosed with Stage IV BRAF positive Metatstatic Melanoma with tumors in his neck and liver. His oncologist put him on Mekanist and Tafinlar about three weeks ago. When he went back for his checkup on Monday his tumors had grown and there were now new spots in his lungs, indicating that the medicine wasnt working quickly enough, but instead of taking him off of them, they've added immunotherepy to his old treatment. The pain in his liver is unbearable and he's starting to lose hope.

Has anyone else had this treatment or any experience with Immunotherapy in addition to targeted therapy that can speak to the situation? Does anyone who has/had tumors stretching their/their loved one's liver have any advice for making him more comfortable? We did the celiac plexus block last month, but it doesnt seem to be touching his liver pain.

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As part of their Commitment to Patients and Caregivers, our partners at Novartis are working to make the clinical trial experience more patient-centric and widely accessible. To this goal, they are currently seeking melanoma patients who have participated in a clinical trial in the past two years and who are interested in serving on an advisory board. This board would offer the patient perspective and important feedback on what can be done to improve clinical trial design, whether digital tools could be helpful to support clinical trial participation, and what barriers exist in making trials more accessible to diverse patient populations. This meeting would take place in New Jersey on Thursday, August 9 and participants will be compensated for their time and travel expenses.

Novartis seeks to assemble a diverse group of patients and has reached out to the MRF to identify those in the melanoma community that may be interested. If you have participated in a clinical trial in the past two years and would like to be considered for this opportunity, please email MRF Community Engagement Manager Cassie Beisel at cbeisel@melanoma.org and include the following information:

  • Location of your clinical trial
  • Was the trial in an academic center or community-based setting?
  • Was the trial a Novartis trial? (not a requirement, other trials are eligible)
  • Optional: to promote a diversity of perspectives, organizers are seeking patients from a wide variety of backgrounds. The following information is requested, but not required:
    • Age
    • Gender
    • Race/Ethnicity
    • Geographic location: Urban/Rural

Responses must be received by Wednesday, July 11. Selected applicants will then be contacted and connected with organizers at Novartis to arrange travel and other details for the meeting.

Thank you for helping to advance the clinical trial process and improve patient experiences and outcomes!  

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