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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ScaredV's picture
Replies 7
Last reply 7/22/2014 - 3:32pm
Replies by: Thandster, ScaredV, vlmd1986, 5dives, Anonymous

Hello everyone,

My fiance and I will be meeting with a new surgeon/oncologist in two weeks to discuss him getting a SNB.  Unfortunately, this is happening after his WLE, which was done in April.  We are still hoping that this will give us some extra piece of mind and that it will come back negative.

I was wondering, what questions should we be asking at the consultation?

Are there any other tests we should be requesting at this point?

Also, how invasive is this type of surgery? His original lesion was on his jawline, so I am assuming the nodes will be taken from his neck... Is this correct?  How much time will he need to recover and return back to work?

Thank you so much, I dont know what I would do without this website. 

 

 

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Hi all,

Is the above medication known to people on here?

It was reported in a UK paper called The Guardian a few weeks ago.

Regards,

Nigel.

 

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tasjacques's picture
Replies 2
Last reply 7/19/2014 - 11:31pm
Replies by: Bubbles, Anonymous

Hi Everyone,

I have been in the MK 3475 trial with dosage 10mc/Kg every two weeks. After 6 months I stop the trial temporarily due to side effects - mainly GASTRITIS - COLLITIS and lost 40 lbs after my stay in the hospital. I restarted the trial 11 weeks later and after 4 months I stop the trial again due to SEVERE GASTRITIS that put me in the hospital again for a week, lost another 20 pounds! They say my pituitary might be in trouble, low testoterone levels....DILEMA... continue the trial and deal with the side effects (I don't have any weight to loose anymore...I am 115 pounds)  or stop the trial?!

Have anyone has this type of side effects or similar to this? Any advice will be greatly appreciate it.

Jacques

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dotty's picture
Replies 8
Last reply 8/23/2014 - 1:57pm
Replies by: dotty, oldblue, sweetaugust, Anonymous, JerryfromFauq

Hi, my biopsy results came back yesterday showing Stage 1a, 0.5mm from a mole on the sole of my foot. I'm 20 years old and this was a big shock for me in the middle of a busy week at university. I'm having a wide excision done this thursday w 1cm margins and am told that apart from regular checkups every 3 months with my derm, there's nothing else I should be doing.

Now, I consider myself very lucky to have caught it early and know that for my stage WLE has a good cure rate, but I'm wondering if there's anything else I can be doing to prevent recurrence? My derm told me my type of melanoma is unrelated to sun exposure and possible more genetic (often occuring in patients with asian ancestry), but that I should be using SPF 60+ from now on. Do I need to go out of my way to avoid being in the sun? (i.e. no surfing/beach, limit going outside??)

I also get colds pretty often so boosting my immune system up is one of my priorities. Do you guys have any tips for diet, excersice or lifestyle changes that are working for you?

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Anonymous's picture
Replies 6
Last reply 7/22/2014 - 4:10am

Any suggestions?  Someone mentioned a favorite book of their's in the war against Melanoma in the past month or two.  I forgot to write down the title.  I already have some books and basically know how I should eat and live, but I'm always looking for more information/recipes, etc. 

What are your favorites?

Hoping for a cure! 

Terrie

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Rocco's picture
Replies 7
Last reply 7/28/2014 - 5:49pm

Wanted to share some hope for others.

Scans last week revealed I'm still NED!  Now scanned every six months. Continue to be very thankful for all the support and hope I've received off this bulletin board over the years. 

Hang in there!

-Roco

Diagnosed Stage IV  in 2005. NED thanks to MDX-010 (Ipi 10MG/KG) Compassionate Use trial in 2009, all the talented and compassionate doctors and staff at DFCI in Boston., and many, many hours of prayer.

 

Luke 1:37

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lbkimball's picture
Replies 11
Last reply 7/19/2014 - 11:30pm

 

Hi there,

I know most melanoma patients don't receive chemo, which is the most common scenario for a chest port. But it's virtually impossible for the nurses to find my veins, and now that I've started an every-3-week infusion of PD1, we've decided that spending 30 minutes and many, many pokes is not worth it, and that a chest port shall be installed on August 7.

My question is, can the port be used for PET/CT and MRI contrast injections? Also, it seems surprising to me when people have mentioned using a "numbing cream" - does it hurt to have the port accessed?

Any other wise words would be greatly appreciated!

Thank you in advance,  

laura - stage IV with lots of brain and body mets. 

 

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http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7Bbb5a811b-8d08-4cb6-bcaf-b3f05924916d%7D/lymphovascular-invasion-regression-novel-prognostic-factors-in-thin-melanomas

"median time to local recurrence was 79 months, the median time to regional recurrence was 78 months and the median time to distant recurrence was 107 months"

 

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MattF's picture
Replies 8
Last reply 7/25/2014 - 8:52am

Hello All

Just a quick update.... newest PET /CT showed increased activity in my bones, lungs and liver

 

Plan now is to stop the Tafinlar and Mekinist as of today and make the switch to ;Yervoy (Ipi) within a week or so once insurance is done.

 

it seems like the right course of action. 

 

Any thoughts?

 

Thanks 

Matt

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oldblue's picture
Replies 8
Last reply 7/19/2014 - 7:54am
Replies by: oldblue, vlmd1986, Ed Williams, lbkimball, Anonymous

 

Dear All.

Last month I had what I thought was a wart removed frommy L thigh and it turns out it was a stage malignant melanoma. It was graded as Clarl Level 4 and Breslow depth 5mm. There is vascular involvement. Mitosis was scored at 5. My LDH blood test was normal.

I then had a PET CT scan and the results were negative to tumour or mets.

This week I had a lymphocytogram (agony) and ultrasound and the reports were good. It showed normal lymph in my groin and uptake from the primary into two sentinel nodes.

I went to theatre two days ago and had a wide margin excision and removal the two sentinel nodes in my groin. I had another suspicious but not sinister mole removed as a precaution and for testing from my L cheek.

I will receive the results from the procedures in two weeks.

Is this how the disease picture progresses? My feeling is that I some good prognostics and some bad prognostics, but I am not sure if that is how it tends to go and that I am now following a well trodden path to my extinction a year or two from now. Or,is it possiblethat the initial histopathology report may have been over stated.

I'd be grateful for any advice.

With best wishes and thanks to all.

Nigel.

 

 

 

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Becky's picture
Replies 4
Last reply 7/19/2014 - 10:48am
Replies by: Becky, BrianP, lbkimball, Phil S

5 years ago, just before his 21st birthday my son Ben was diagnosed with melanoma. His was a very rare oral melanoma ( on his tongue) that had spread to one lymph node. He did a year of interferon during his senior year of college.

Yesterdays petscan showed NED! Feeling very relieved.

I share this in part to give others hope. Oral melanoma tends be be very aggressive with a grim prognosis. I know, in the melanoma world, 5 years does not mean cured, but I feel like it is a huge milestone.

I am so grateful to this board and those that have given support .There are probably a lot of people who never post, but read to gather information and feel connected.

Keep on fighting

Becky

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tommy90's picture
Replies 10
Last reply 7/18/2014 - 9:23pm
Here is a pic: i57.tinypic.com/atmag9.jpg
 
Yes, the angle is different and yes, the lighting may not be the exact 100% and the jpeg quality may be a bit different too, but this shows the difference. I think the tail (the little blurry brown thing under the mole) has grown and changed. The mole is still very small and I've had it for ages.
 
You cannot see the changes visually unless you have been watching it like a hawk, which I have.
 
I have a derm appt on Monday. I am FLIPPING OUT RIGHT NOW about to cry.
 
can someone reassure me?

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melfighter's picture
Replies 6
Last reply 7/17/2014 - 9:31pm

Just to update on my husband, he has been on the combo since Feb & based on the scans from yesterday, our local monitoring oncologist said the combo is no longer working for him, and told him to him to stop taking the combo. He is now unable to move from the waist down. I tried to get an appointment to see his UCLA oncologist tomorrow or as soon as possible, but was told my husband would have to wait til next Monday.  So hard for me to wait and see him suffer til Monday without any answers.

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Nell's picture
Replies 7
Last reply 7/19/2014 - 5:35pm

I  had my second infusion of Yervoy last week.  I am starting with some diahrrea, and I know this side effect is watched carefully...Are most patients able to continue treatment or does this often result in having to stop? I also am wondering if there is a correlation between experiencing side effects and having successful results with Yervoy.Thank you for the help and information.

One voice can make a song; one life can change the world.

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