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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mama1960's picture
Replies 7
Last reply 11/21/2012 - 5:46am

Tomorrow will 7 weeks since surgery. Still sound 200 ML per day. Yesterday, the stitch holding one of the tubes pulled out, and the tube came out enough to lose vacuum in reservoir. I will be calling doctor in the morning, but just want to hear from others that this has happened to. Right now, I'm taped and strapped up.

It is what it is.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/21/2012 - 5:45am

Has anyone stopped taking zelboraf and switched to yervoy with good results? wondering if that would be a good idea and keep zelboraf for back up if yervoy fails.

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Sharon's picture
Replies 2
Last reply 11/20/2012 - 9:55pm
Replies by: aldakota22, Tina D

My husbands CT scan shows no sign of cancer! Praise the Lord I am so Thankful to HIM. He is still on Hydrocortisone 30mg a day he has adrenal fatigue from being on steroids during Yervoy treatment. He is leading a normal life doing all the things he loves to do. I wish you all a most wonderful Thanksgiving.

God, Family, Friends and Dogs ~ it's all that really matters!

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Has anyone heard of this or researched it?  There's info at pubmed but I can't access the full articles.  Other than that I don't see much.  Looks like the info is from 2009.

Live!

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Has anyone heard of this or researched it?  There's info at pubmed but I can't access the full articles.  Other than that I don't see much.  Looks like the info is from 2009.

Live!

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pfcresearch's picture
Replies 2
Last reply 11/20/2012 - 6:18pm
Replies by: pfcresearch, Anonymous

Good afternoon.

Please forgive the intrusion.

I am inviting people who are currently diagnosed with Stage III Melanoma to participate in a telephone interview to discuss how you feel about some of the treatments you may or may not have tried.

The interview will be conducted via telephone, at your convenience. The interview will last no more than sixty minutes; each participant will be paid an honorarium of $100 as a thank-you for your time and trouble.

I promise that this is not a sales presentation of any sort--strictly medical opinion research.

If you think you might like to participate, please call me at 212.289.0087 (of, if you prefer, please respond by email with a number where I can reach you).

I promise that this is not a sales presentation, of any sort--strictly medical opinion research. You will not be asked to try any treatments or therapies. I have been in the business of medial opinion research for more than 32 years. I can assure you that all participants will be treated with dignity and confidentiality. From our experience, participants are always pleased to join in on these studies.

Thank you, and best regards,

David Leonard
Director
pfc Medical Opinion Research
New York, NY
212.289.0087
pfcresearch@verizon.net

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jukst9's picture
Replies 2
Last reply 11/20/2012 - 6:05pm
Replies by: jukst9, Janner

Hi -

I had a deep shave biopsy node on a mole appx 4mm wide and 2mm in length.  The report has me terrified, as do the doctors, as they feel a dermopath should re-read the slides based on the info provided, so that is scaring me.  Here is the original result:

 

Clarks dysplastic nevuse, compund type, inflamed.

Unusual with features of partial regression.

Margins negative for lesion.

In addition to the area of partial regression, the unusual feature is a reare melanocyte above the dermo-epidermal junction.

Because of these unusual features complete but conservative re-excision is suggested as clinically indicated.

 

Does this mean I have melanoma?  The surg-derm seemed concerned that there was no detailed info in the report and wants to have a dermpath re-read.  Please help!!

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/20/2012 - 5:03pm
Replies by: Anonymous, polo, Janner

Hello My special someone has been diagnosed and has had a small surgery removing some of this melanoma cancer. I would like to know if anyone who has had similar symptoms can tell me how to communicate with my special someone. Im trying to understand how to support and what I can do to be there for.

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EricNJill's picture
Replies 17
Last reply 11/20/2012 - 4:31pm

It's been a VERY long time since I've been here.  Losing Eric was one of the hardest things I've ever been through in my entire life.  It's only by the grace of God that I made it through the first year, but I'm here.  Today I updated the Cancer Resource List on my blog for patients who are going through treatment.  I hope you find this helpful.

http://melanomasucks.blogspot.com/2012/10/resources-for-cancer-patients.html

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Sharon's picture
Replies 7
Last reply 11/20/2012 - 2:59pm
Replies by: Sharon, marysan, NYKaren, Jim M.

My husband was on and off steroids durning his Yeavoy treatments.  There is no sign of Melanoma PTL!  He has been seeing an Endrocrinlogist and is taking Hydrocortisone as he is not making his own steroids.  He has tried reducing the amount slowly for sometime now and he just drags and has a hard time eating which are the results of Adrenal fatigue. He is curently on 20mg had been on 7 for a while but just was not able to function on that. Wondering if others have had the same problem and at this point he may need to take them the rest of his life. If any of you can offer any help ideas or what else we could do I would really appreciate any help you can offer.  Thank you Sharon 

God, Family, Friends and Dogs ~ it's all that really matters!

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/20/2012 - 2:56pm
Replies by: Janner

Hi, both my sister and I are Melanoma patients. My sister is overweight ( BMI of 30) and at her last check up the doctor told her she is at risk for diabetes if she doesn't lose weight . He suggested diet and exercise after she asked him to give her something to help her lose. She went to a local weight loss clinic and they prescribed Phentermine- it's a psychostimulant drug in the phenethylamine class ( similar to amphetamine) and works by suppressing appetite.  A doctor runs the clinic, but he seems like it's a fly by night type deal.She insists he told her it's safe with her history of Mel- Stage 1 - 6 years ago.

I'm concerned for her and don't want her to take it as I'm afraid it will bring back her Melanoma. I know people with Melanoma take anti depressants that have similar amphetamine properties ( like Wellbutrin) but does anyone have any experience with this drug or know if it's unsafe for Melanoma patients? Thanks for any info provided.

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Anonymous's picture
Anonymous
Replies 0

Hi, both my sister and I are Melanoma patients. My sister is overweight ( BMI of 30) and at her last check up the doctor told her she is at risk for diabetes if she doesn't lose weight . He suggested diet and exercise after she asked him to give her something to help her lose. She went to a local weight loss clinic and they prescribed Phentermine- it's a psychostimulant drug in the phenethylamine class ( similar to amphetamine) and works by suppressing appetite.  A doctor runs the clinic, but he seems like it's a fly by night type deal.She insists he told her it's safe with her history of Mel- Stage 1 - 6 years ago.

I'm concerned for her and don't want her to take it as I'm afraid it will bring back her Melanoma. I know people with Melanoma take anti depressants that have similar amphetamine properties ( like Wellbutrin) but does anyone have any experience with this drug or know if it's unsafe for Melanoma patients? Thanks for any info provided.

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Jls377's picture
Replies 3
Last reply 11/19/2012 - 11:26pm
Replies by: Jls377, Mandi0280, Valentine

I am looking for any bit of guidance and am so grateful for any responses. My cousin was diagnosed with stage 3C Nodular Melanoma a month ago. He went to his primary to have an infected mole on his neck looked at as was misdiagnosed for about a month and a half before the primary burned off the area and had it biopsied. A lot of time was wasted. He had surgery on his neck to remove the tumor and verify that lymphnodes in the area had been impacted. He then had a second neck surgery to remove a second tumor that appeared after the first surgery. The surgeon said that he wanted to hold off on doing a neck dissection because he may need to go back in with several more surgeries to removed new tumors as they sprout up. They are suggesting a series of radiation for several months. Overall the doctors have been less that optimistic and seem to be taking the attitude that it is so aggressive that they need to treat as it evolves. This includes radiation and then regular ultrasounds/pet scans to catch any new tumors and then they would do additional surgeries. I am really looking to hear feedback on any successful treatments people have experienced. Also what ones to steer clear of. There is also a thermotheapy that has come up as an option. The doctors have told him that he is too far along in the staging to do many of the cancer trials or chemo. Any feedback would be so helpful! Positive stories would be uplifting!. I am open to hearing about any and all treatment options including more holistic approaches. Thank you for taking the time to hear our story.

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tgro97's picture
Replies 5
Last reply 11/19/2012 - 11:06am

Hello all,

 

I am new to this board and hoping to contribute in the future.  At this point I am hoping for some feedback as we are still learning about this disease.

My brother is 37 and a previous occular melanoma patient.  4 years clear after his treatment..  That was 2 years ago.  Last week he was diagnosed with stage 4 liver melanoma.  We are in NYC and he was diagnosed at a city hospital by a very compitant oncologist.  The Oncologist is recommending a high dose (10mg) 6 dose treatment regimem of Yervoy -- IPI.   We are talking to Sloan and unfortunately it is taking a while to get an appointment.  We have heard throught the grapevine that they also recommend this level of dosing.  Without a second opinion, we turned to another Oncologist at a top NY teaching hospital.  This person comes highly recommended and they recommend a totally different course of therapy.  Yervoy at 3mg for 4 doses, take a scan, see the results and then wait an additional 8 to 12 weeks without additional therapy and run a scan again.

 

Stage 4 is very scary.  I don't need to tell that to anyone on this board.  I need help understanding the best course of therapy from the patient perspective.  Has anyone tried this high of a dose?  if so, was it tolerated?  Was 3mg effective at slowing the growth.  If it wasn't, what was the next step.  Any insights would be greatly appreciated.

Tony

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/19/2012 - 4:40am

My mother was diagnosed with metastic melanoma this past summer with 3 lesions on her liver and possible lung spots. She had her fourth and final yervoy treatment last week and at that time the doctor said the tumor in her liver had continued to grow. It has definitely grown during treatment. Instead of waiting 3 weeks after final yervoy treatment for scans we've moved scans up a week, in a few days. I'm looking for ideas, thoughts about what is next if yervoy hasn't worked. Surgery is not an option. Wondering if radiation would shrink tumor in liver. Any help is most welcome!

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