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.

Expand/ Collapse Topic
 
Replies By
View Topic

We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

Login or register to post replies.

How do you treat low platelets? Steroids are not good for melanoma. Anyone had a long term treatmetn for platelets?

Login or register to post replies.

Lisa13's picture
Replies 13
Last reply 5/6/2011 - 3:57pm

I just got a call from my oncologist regarding my CT scan. They found some very small nodules in my lungs (up to 20) and my oncologist wants to have me do another CT in a month to see if they've grown in size.  He also wants his radiologist double check the scans as well as not all nodules are cancerous.  Unfortunately, this means I won't be able to participate in the ipi trial in Montreal.

Has anyone had nodules turn up that arn't cancer?  I'm really trying to hold it together until I have something to worry about, but this is incredibly hard.

Lisa

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

Login or register to post replies.

Jamietk's picture
Replies 9
Last reply 6/7/2011 - 11:29am
Replies by: Anonymous, bcl, nicoli, marster37, KatyWI

My friend and coworker was diagnosed with breast cancer last year. She also has a history of basal cell carcinoma and is fair skinned, has light hair, and lots of freckles. On Monday (Melanoma Monday). She got an email from Celsius Tannery explaining the benefits of vitamin D in regards to preventing or preventing a recurrence of breast cancer. They were recommending tanning to help prevent breast cancer recurrence. And, get this, during the month of May, any donations made to them are going straight to their breast cancer research to learn more about the correlation with vitamind D. Of course you have to go in person to make a donation. I agree vitamin D is important. My Surgical Onc at MDA has me on it. But I get it from a pill, not a tanning booth. I am disgusted that they are promoting the use of tanning beds to prevent breast cancer. And get this, her dermatologist is doing the same thing. Her derm told her because she has had breast cancer, it would be in her best interest to tan for 10 minutes, 3 times a week, to help prevent recurrence. So let's trade one cancer for another, right? That's the answer isn't it? And although I disagree with the tanning company, why are they promoting this during Melanoma month. Wouldn't it make more sense to do it during October? Sounds to me like they're also trying to down play melanoma month since all donations in May go towards breast cancer/vitamin D research. How sad to prey on someone with one cancer to sell their business and increase their risk of another cancer.

Login or register to post replies.

adgesoph's picture
Replies 10
Last reply 5/6/2011 - 8:49pm

 

I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

Login or register to post replies.

 

I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

Login or register to post replies.

Shelby - MRF's picture
Replies 1
Last reply 5/11/2011 - 6:02pm
Replies by: Gene_S

The MRF has partnered with the Melanoma International Foundation to offer a free webinar to patients on Thursday, May 12, 2011 from 7-8:30pm EDT.  Please join Dr. Antoni Ribas to learn about The Changing Landscape of Melanoma Therapies.  Dr. Ribas, from UCLA, is a two-time MRF research grant awardee, once in 2006 and again in 2011.  To register for the webinar, please use the following link:

 https://www1.gotomeeting.com/register/269280121 

Login or register to post replies.

Carmon in NM's picture
Replies 2
Last reply 5/5/2011 - 3:08pm

It's been a long time since I had any fear or anxiety about seeing doctors so I was very surprised when I had a full blown anxiety attack yesterday about today's appts to see a neurologist and radiology oncologist to discuss whole brain radiation and radiation therapy at the adrenal tumor site. I ended up taking xanax for the first time in nearly two years.

I think what set me off was that I never expected to be NED again. I figured the best I could hope for was stable disease and that treatment decisions would be as easy as just continuing to move forward. Now here I am adjusting to having no measurable disease after a year of brain surgery, gamma knife surgery and chemo in a clinical drug trial so suddenly I have a whole lot to lose again. I'm just sharing this so that newer folks to this disease will know that all of us have our ups and downs, even after you've gotten the incredible news of being NED!

After my onc suggested WBR and radiation therapy as a prophylactic treatment, I dove back into the information stream and my husband and I have agreed to hold WBR as a last resort only. I have had no met activity in my brain for a year now so it makes no sense to us to take the risks of WBR as a preventative when there may be nothing to prevent. Plus, if I have active cells somewhere else in my body that later on migrate to my brain and throw a party again, then I would have lost that WBR option. So we are sticking to regular scans and hoping that if anything turns up, we can use gamma knife again to treat it.

I'm on the fence about radiation therapy to the adrenal tumor site though. It makes sense to me to do a prophylacic treatment there to make sure no stray cells are still living after chemo but I'm concerned about the affects to my body since the radiation would be happening in an organ intense area. So hopefully after today I'll have enough information to make that decision as well.

And just so you know, today I woke up happy, confident and with my sense of humor back intact again!

Carmon in NM - Stage IIIb 9/2008, Stage IV 5/2010 with brain and adrenal mets (craniotomy, gamma knife, clinical trial with carboplatin, paclitaxel, temodar) NED since 4/13/2011

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

Login or register to post replies.

Nebr78's picture
Replies 1
Last reply 5/5/2011 - 7:47am
Replies by: Vermont_Donna

i had strong doses of radiation on the side of my face and a lump on my chest.  Both lums are almost gone.  That has been 3-4 months ago.

I am now almost an invalid. I am weak all the time. 24/7.And I mean really weak.  At times my whole body will tingle and feel like it is numb.  My ankles tingle all the time.  I walk with a cane.  If the whole body isn't tingling, the weakness is from waist down.  I can't do anything.

 

Has anyone had this sort of side effect from radiation.  The Dr. said the 17-18 treatments were very strong.. I had golf ball size lumps.

Of course I am stage iv melanoma.

Doctors seem baffled.

Login or register to post replies.

My wife was diagnosed with a 4mm melanoma on her neck in October 2010. She was misdiagnosed in 2005.  Can anyone tell me about the long term side effects of Intron A?

 

Login or register to post replies.

thebunches's picture
Replies 2
Last reply 5/4/2011 - 9:07pm
Replies by: Janner, thebunches

My husband's initial biopsy path report is below... how can his Clark Level be VI but also have a Path Stage of T1a? What does this mean? (We have our first appt with the surg onco doc on Monday, and getting through this weekend is not going to be easy.)

______________________________________________________________

Malignant Melanoma

Thickness: 1.0 mm

Clark's Level: IV

Growth Phase: Vertical

Ulceration: Not Identified

Mitotic Rate: <1/mm2

Angiolymphatic Invasion: Not Identified

Features of Regression: Not Identified

Lymphocytic Host Response: Non-Brisk

Pathologic Stage: T1a

Microscopic:

Atypical Melanocytes are present within the epidermis and the papillary and reticular dermis. There is confluent melanocytic proliferation at the dejunction. Atypical spindle melanocytic proliferation is seen within deep dermis along with fibroplasia. Speail immunohistochemical stains melan A and S-100 helps to identify melanocytes and outline their distribution. Melana stain demonstrates pagetoid proliferation of melanocytes. Multiple levels are examined.

Comment:

The lesion extends to the base of the specimen. Reexcision for clear margins is recommended. 

Login or register to post replies.

CLPrice31's picture
Replies 7
Last reply 5/5/2011 - 5:41pm

I am not sure if you all have seen this. It was brought to my attention on Facebook from another melanoma warrior. I posted it on my blog, on facebook, and thought you all would love to see it as well. One of the beautiful ladies in the video emailed me today and thanked me for sharing the video with others. I believe I can speak for all Melanoma Warriors in thanking her for making this. It is EXACTLY what we need to promote melanoma awareness!

http://www.youtube.com/watch?v=_4jgUcxMezM&feature=share

 

Share it. :-)

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 5/4/2011 - 7:34pm
Replies by: Anonymous, Rocco

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2011 - 9:46pm
Replies by: Vermont_Donna

I just came back from attending the Stowe (VT) Weekend of Hope - now in its 11th year.  This was my first time attending. What a great event!  Held the first weekend in May each year, the weekend offers the chance for cancer survivors and their families to convene in the beautiful and welcoming town of Stowe, Vermont for 3 days of activities - or just relaxation.  As a first time attendee I was eligible for and received free accomodations in Stowe  - and the actual conference was free.  Organizers noted that the Inns and Hotels around Stowe donated some $90K in accomodations to this year's event for first time attendees!  The online registration process and follow up phone call to register for the accomodations was painless.

There were over 410 survivors registered this year representing over 16 types of cancer.  While the color pink was out in force, I never found it overpowering.   Survivors were able to find common ground pretty easy regardless of their diagnosis. (Say 'steroids', 'chemo', or 'health insurance' to anyone and there was an instance bond/discussion).  The conference like atmosphere offered a number of sessions regarding specific cancers with discussions by doctors,  to more broad topics of interest to many - relaxation/self-hypnosis,  what's next after cancer, etc  offered by patient survivors turned advocates or other types of specialists.  I chose to attend many of the sessions and still had some time for R&R.   While most attendees were from New England, NY, PA, there were some from across the US.  There were many returning attendees who mark their calendars each year to come and bond with other survivors and/or reconnect with their families in Stowe.   I will be one of them for the 2012 event!

For info on this year's event:  http://stowehope.org/ 

Login or register to post replies.

boot2aboot's picture
Replies 13
Last reply 5/5/2011 - 12:41pm

I am curious to find out if anyone else got an initial diagnosis of IIIC? what treatments did you start? how were the results?

don't back up, don't back down

Login or register to post replies.

Pages