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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yazziemac's picture
Replies 3
Last reply 4/13/2014 - 10:27pm
Replies by: MattF, Teochasse, jahendry12

Hello

My husband is currently undergoing 33 radiation treatments for Stage 3 melanoma in his neck.  His initial tumour was diagnosed last July and he had surgery to remove it.  It recurred in January and he had a radical neck dissection in mid-February, 2014.  Of the 26 lymph nodes that were removed, none were postive for melanoma.  We are still processing this situation emotionally and I am very thankful to have found this site.  The comments from those who are further along this path are very helpful.  We chose to do radiation because his margins in one area were not clear after the neck dissection.  The radiation treatment disqualified him from doing the clinical trial that was another option.  The third option would have been to follow the radiation with one year of Interferon Alpha, which we decided against.  My husband, Peter, has finished 13 out of the 33 radiation treatments so far.  He is very fatigued and his skin is quite burnt already.  His throat is so tender that he is very limited in what he can eat, and his appetite is small.  The symptoms will intensify over the next 4 weeks, which will be hard to see.  Hopefully the radiation will kill whatever cancer cells are left in his neck.  We live in Kitchener, Ontario, and he is being treated at Grand River Cancer Centre with Dr. Knight and Dr. Fortin.  We also had a second opinion from Dr. Hogg at Princess Margaret before making our treatment decision.  He is BRAF and NRAS negative.

Yasmin

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/13/2014 - 5:49pm
Replies by: secondhalf, Linny, Anonymous, Bruce Davis, Janner

What are the differences between getting treated at a Melanoma center verses Cancer Treatment Centers of America?  

I am weighing the options between Johns Hopkins and CTCA Philadelphia.  I have met patient with cancers other than melanoma that loved the CTCA , buts I am concerned that the CTCAs might not be most up to date with melanoma treatments

Thanks for your input.

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Rocco's picture
Replies 1
Last reply 4/13/2014 - 11:09am
Replies by: G-Samsa

Friend of mine notified me that their family member recently joined our ranks with advanced melanoma - brain and lung mets.  Mentioned that the individual is in the midst of a Phase I trial - Ipi and Whole Brain Radiation. I believe his Ohio based trial (at The James Cancer Center - part of OSU) is part of the National trial # NCT01703507.

Wondering if anyone out there has gone thru a trial with WB radiation and Ipi?  Any thoughts or experiences to share?

 

Thanks in advance - and hang in there everyone!

-Rocco

Stage IV since 2005, Ipi responder since 2009, NED

Luke 1:37

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jae p's picture
Replies 7
Last reply 4/13/2014 - 12:24am
Replies by: Kim K, jae p, Anonymous, SABKLYN, washoegal

Hello, everyone!  It's taken me some courage to post here and embrace the fact that I have/had melanoma.  Funny how it's taken me so long to accept it.

Last month I went through the whirlwind of diagnosis (stage 2a... ulcerated...mitotic rate 2) and WLE and SNL surgery.  All was clear, only good results.  I wrangled a good melanoma specialist for those check-ups they recommend, and I'm going to begin seeing her in two weeks.  I have no idea what the visits entail.

I accidentally saw 2a's survival statistics, and have also read the way people frame melanoma when they discuss it, as though it's only a matter of time until the next recurrence, until it gets worse. Since I'm of course worried about this, it's very difficult to just carry on with my life despite my (current?) good news.  I hope the anxiety will pass, but more than that I hope what I'm gleaning from what I read doesn't have to be true for everyone.  I'm very scared. :(

Thank you for listening. I admire this community for all its resiliency and empathy for one another. It's really wonderful!

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jag's picture
Replies 2
Last reply 4/12/2014 - 2:31pm
Replies by: arthurjedi007, BrianP

does anybody have an idea as to how far along in the trial process PD1 antibody is? I.E, when can you get it without a trial?

Regards

Insert Generic Inspirational Motto Here

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DZnDef's picture
Replies 16
Last reply 4/11/2014 - 10:35pm
Replies by: kylez, DZnDef, Anonymous, tcell, Janner, Carole K

Has anyone on this board chosen the Alternative Treatment path with any success?  I was just diagnosed Stage IV (mets in lung) unknown primary.  I'd like to look into ALL treatment option including both traditional and alternative.  Just wondering if anyone on this board had tried something they'd recommend.

Thanks,

Maggie

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/11/2014 - 5:38pm
Replies by: DZnDef, Anonymous, arthurjedi007

Hi all,

I have been diagnosed Stage IV melanoma, unknown primary (melanoma found in my lung).  Does anyone have a recommendation for a good "melanoma speicalist" in my area?  I live in Orange County, California (that's Southern California).  I am willing to travel if necessary, but given all the sunshine here, I would expect we would be crawling with melanoma specialists locally, no?

I asked my Thoracic Surgeon for a recommendation to a melanoma specialist and he referred me to Dr. Jakowatz of UCI Medical.  He is a surgical oncologist.  Is that the right "type" for me to see?  I have my first meeting with him tomorrow (Wednesday) but I have heard mixed reviews about him so I may want to keep looking.

Everyone on this board seems to stress the importance of finding a good "melanoma specialist".  I'm all ears for recommendations.

Thanks,

Maggie

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BrianP's picture
Replies 5
Last reply 4/11/2014 - 5:32pm

On my last CT scan I had some thickening of the small bowel (site of previous disease) which was "concerning for worsening metastatic disease."  I did a petscan a few days ago and the scan showed no FDG uptake at the area of concern in the small bowel.  Of course that was a huge relief!  The other part of the report that I found very encouraging was that the two original nodules continue to be stable but more interestingly show no FDG uptake.  A small nodule in my lung shrank from 5mm to 2mm in 3 weeks and also shows no FDG uptake.  Essentially there was no FDG uptake anywhere.  Has anyone experienced anything like this with petscan reports before.  Can any assumptions be made about the tumors at this point?  Of course I would like to assume they are "dead" but I'm not sure you can make that assumption at this point.  Any similar experience or knowledge would be greatly appreciated.

Brian

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Tina D's picture
Replies 13
Last reply 4/11/2014 - 2:25pm

I am thankful to say that my scans this week remain stable. Going into the scans they told me I have had an 80% response, so that is where I gratefully remain. I am aware many are currently struggling, and I have lost a dear friend in the past month to mel. Just posting as an encouragement for all.

Will be seeing an endocrinologist next trip to Vandy to try to get my thyroid and adrenal situation balanced out, but I feel very well & only symptom really is fatigue. I think the fatigue is largely endocrine related issues.

Hopefully this will be approved soon so everyone can have access.

Tina

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/10/2014 - 10:16pm
Replies by: Anonymous, hdevlin, NYKaren, melissa ann, arthurjedi007

I'm wondering if anyone has had any experience with severe itching after IL-2 treatment. It has been almost six weeks and my dad is not getting any relief.  Nothing has helped so far (gabepentin, Benedryl, cold compresses, etc...), it's maddening. Any suggestions?

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Leslie'sHusband's picture
Replies 2
Last reply 4/10/2014 - 6:54pm
Replies by: Bubbles, BrianP

Les is scheduled to have her "minimally invasive" (laproscopic) lymphadectomy of the left groin on Tuesday.  Turns out the delay in getting the path diagnosis from Duke was due to local hospital dragging their feet in sending the slides down to Duke.  Once received, we had our phone call the next day.  Duke will also be doing an ultrasound of her left ovary on Monday to make sure that the hot spot on the PET is nothing serious.  Local Docs already looked at it and deemed it nothing abnormal, but Dr. Tyler at Duke wanted another look.  Pray that the results will come back clean, and no further spread to the other lymph nodes.

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Anonymous's picture
Replies 12
Last reply 4/10/2014 - 5:06pm
Replies by: Aussielyn, Tina D, Linny, Anonymous, Thandster, mau, momof4boys

Hello. I am two months removed from a left groin lymph node dissection. I wear a compression stocking every day, elevate my leg when it feels tired and often when the stocking is off at night, will use a wedge to elevate my leg further.

The lymphedema specialist I am seeing says my leg looks very healthy. It is still early to determine if I have any sign of the beginning stages of Lymphedema. My left leg compared to my right (from my ankles to my upper thigh) are within 3 cm or less of one another.

For those who had the groin dissection, is the compression stocking a permanent item to be worn 24/7 or has anyone been able to find proper management to where they can go without the stocking or to something a little less conspicuous like a compression sock? I understand there is no reason to wear one while I'm working but I certainly would like to spend my free time without one.

The second question is this. We've recently purchased a hot tub, mainly to provide relief to our tired muscles and backs. Has anyone with the dissection told specifically NOT to use a hot tub. I've had mixed opinions from medical experts, some say it should be fine, some say avoid it like the plague. Has anyone here used them since their dissection? Experiences?

thank you

 

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Teochasse's picture
Replies 6
Last reply 4/10/2014 - 1:57pm

Some folks might remember me  from when I was looking desperately for a  treatment advise on  this board back in 2011 .Fot those not aware of my medical history,I was diagnosed with Cervical Mucosal Melanoma in  June 2010 after a profound vaginal bleeding and lifesaving hysterectomy.I've had radical lymphadenectomy /nodes came back clear/ in September 2010 and local re-occurence in May 2011.

If you think that melanoma is the worst cancer you can be diagnosed with,then figuratively speaking, I was diagnosed with the Queen of all Melanomas. 

Cervical Mucosal Melanoma is an extremely rare and aggressive neoplasia with less than 100 women in the world diagnosed with it.Local and distant metastases with MM occur in the span of up to 24 months.The overall survival rate of this disease is less than 19%.That means that less than 2 women survived this cancer.Ever.

Guess what?

After my last PET scan/pap smear as of 2 weeks ago, not  only I am still  alive and kicking,but to the utter dismay of my Doctors,  I am still NED.

I AM  that one person who survived against oll odds.

My Doctors call me a Walking Miracle.

Do I feel the luckiest person in the World?Absolutely.Yet I am not here to brag about my good fortunes neither  do I intend  to be unsensitive to the fellow  warriors waging their brave battles against this beast of a disease. I am so sad for all the people who lost their battles with this horrible cancer in the last 3 years.

I am here  posting this  to  deliver a message of hope and encouragement.

Do not EVER lose hope.It is not over untill it is over.You are an Individual and you have every chance of beating this disease as long as you live.Nobody can tell you how much you have left-because you  might well  have  your  whole life ahead of you.A lots of sunsents,and dawns ,and sweet  Far Nientes  /nothing doings/ .....

I personally intend to die of old age.With grey hair,wrinkles  and with vivid happy  memories.Not now,not  in pain ,not in anquish,not like that.It is not an promise-it is a resolve.

Don't stop believeing in miracles.That miracle could be YOU.

 

 

Teodora Chasse

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Replies by: clusterfoo, Patina, SABKLYN

Hey, so at the beginning of this year they found my primary in my scalp. About a month ago I had a skin graft and sentinel lymph node removed from the back of my neck.

The lymph node (which was large enough that I discovered it myself) came back positive. Since the surgery (it's been about a month), they found a new lump right under y ear. This was not there immediately before the surgery and is now large enough that I can see it in the mirror.

My surgery is to be scheduled in about a month.

Some questions:

* It feels like a whole month is a really long wait, considering this new lump came in so quickly. Should I be pushing for a sooner date, or is this normal?

* I am being treated at the Princess Margaret ENT Clinic in Toronto and have so far met the surgeon and a radiattion therapy Dr., should I be looking for a melanoma specialist in the Toronto area? Should I have met with an oncologist already? What information should I be asking for?

I had already spent a year walking around with these tumors because both my family doctors  and the walk-in clinic I had asked told me they were "nothing to worry about," until I demanded to see a dermatologist and to have the lump biopsied; so I'm not comfortable just sitting back and waiting if there's something more that can/should be done.

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Les is scheduled to have her "minimally invasive" (laproscopic) lymphadectomy of the left groin on Tuesday.  Turns out the delay in getting the path diagnosis from Duke was due to local hospital dragging their feet in sending the slides down to Duke.  Once received, we had our phone call the next day.  Duke will also be doing an ultrasound of her left ovary on Monday to make sure that the hot spot on the PET is nothing serious.  Local Docs already looked at it and deemed it nothing abnormal, but Dr. Tyler at Duke wanted another look.  Pray that the results will come back clean, and no further spread to the other lymph nodes.

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