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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Bonnie Lea's picture
Replies 1
Last reply 9/30/2010 - 1:19pm
Replies by: Sherron

message on FB from his daughter.....He is a great guy and friend to me this "canadian friend" as he called me.  OH dear God please give him a safe passage.

Just Keep on Hanging In

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JuleFL's picture
Replies 30
Last reply 9/30/2010 - 12:36pm

My sweet husband, Cal, a former Navy and airline pilot, is now flying in Heaven.  I thank all of you for the information and inspiration that we have received over the last 10 months of this grueling journey.  I wish all of you hope, love and healing.

JuleFL (Cal's loving wife)

Oh, I have slipped the surly bonds of earth and danced the skies on laughter-silvered wings.........put out my hand and touched the face of God. John Gillespie Magee, Jr

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gbaum's picture
Replies 13
Last reply 9/30/2010 - 12:28pm

My wife Aze lost her battle with Vulva Melanoma.. She fought it for 10 months and the cancer won. Aze went peacefully and we were able to say what we wanted to to each other. I will miss here very much.. We just celebrated our 1 year aniversary on August 18th and she passed 6 days later.. Our baby Sophia and I will be moving back to the USA now to start a new beginning. 

I want to thank everyone for the advice and support we received from you all. I wish you all the best in this battle which I hope there comes a cure one day. Stay strong and don't give up hope.. God Bless everyone..

 

Gary

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workingabroad's picture
Replies 7
Last reply 9/30/2010 - 12:04pm

Hello from someone new here...

My mother has had ML and I've always been quite aware of the need for skin checks, etc.  I've had two negative punch biopsies, and know how important it is to have either punch or excisional biopsies of any suspicious mole.  This summer, a very suspicious mole appeared out of nowhere on my husband's back.  Although it was symmetrical and smooth-edged, it was very dark black, new, and completely out of place.  I insisted that he have it checked out, and schedule a biopsy.  The derm told him that although he didn't think it was cancerous, "it's like playing with a cobra" and he should have it removed.  Today he went back for the procedure.  Unfortunately, I didn't go with him.  The derm convinced my husband that it would be fine to electrically cauterize it, along with some skin tags around his neck.  I could have killed my husband for allowing it, but it was too late.  No tissue was sent for biopsy, so we have no idea whether that lesion was pre-cancerous, cancerous, or benign.  It was simply destroyed.

I didn't know that any derm would still be so ignorant as to *not* send a suspicious mole for biopsy.  However, we are working abroad at the moment (we're from the U.S.) and local derms do not see much ML.  There is not a lot of risk or incidence among the local population.  We thought that since this derm was educated in the UK that he'd be more knowledgeable.

Is there anything that can be done, aside from kicking myself and better educating my husband so he never allows a derm to do this again?  What concerns me is that the derm told my husband (as he was cauterizing):  "This is very black, and very deep."  I'm really worried that it might have been a nodular melanoma.  It terrifies me that we may never know until (God forbid) it's too late.  I haven't expressed this to him, as there doesn't seem to be any point in making him panic about something that's over and done with.  Any advice or words of support are very welcome.

Thank you!

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emilypen's picture
Replies 8
Last reply 9/30/2010 - 9:45am

Hi All,

Just wanted to give you an update. My husband is participating in a combo drug study :http://clinicaltrials.gov/ct2/show/NCT01155453

Which is a combo study of 2 drugs, one that works on the P13K pathway and one on the MEK pathway ( which is in the same pathway as BRAF).

It's been 2 weeks and the change in him is astounding, to me at least, the docs are of course more circumspect, but my hubby can tell the pain is getting less every day, he actually forgot to take his morphine for 2 hours the other night... which is amazing as he is on 60mg slow release twice a day and before the drug was taking breakthrough pain meds at least once a day.

His energy is up, he's sleeping better, apetite is good and for the first time in a long time he's really eager to get back to work!... :-) so my fingers and toes remained crossed... the next scan is on Oct 12th.

I'll keep you posted.

 

Emily

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himynameiskevin's picture
Replies 19
Last reply 9/29/2010 - 7:18pm

Hello everyone. I had stereotactic radiation done yesterday, hopefully took care of the met in my brain. As for the ones in my lungs, liver, chest and back, I will be starting IL-2 on monday. I'm a little scared, a little nervous, with all the possible side effects, but have got my hopes up for the possible help it may bring. Has anyone here had a positive experience with IL-2? Any recommendations or tips I might benefit from? How about nutrition while on it? I've seen the operationsunshield website, but would appreciate any other opinions or stories. Thank you. Oh and on a lighter note, I got married 2 days ago, she looked beautiful, and we're moving into our own place this weekend. It will be nice to arrive to a new home after the hospital stay. :)

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Is it common to run a low-grade fever with Melanoma?  Thank you.

Take Care,

Sherron, wife to Jim

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jwb355's picture
Replies 5
Last reply 9/28/2010 - 10:07pm
Replies by: ValinMtl, triciad, KatyWI, King, joy_

I have been diagnosed with mel. clarks level 4 had surgery on my arm and all lymphnods removed under right arm. Now the oncologist is saying that I need to do a month of interferon but it is my choice. I would like to hear from anyone that is going thru this or been thru it. I just don't know what I will do but need some info before I go any further. Having a PET scan next month and possibly radiation.

Jerry in Ga.

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Lori C's picture
Replies 13
Last reply 9/28/2010 - 8:29pm

I am worried about Will (as always, but more right now than usual).  He had chemo (taxol & carboplatin) on Tuesday.  His appetite has not been great on this treatment but he's done okay.  He had a brain scan (clean, thankfully) because he'd had a few bouts of vomiting.  He was nauseated this morning and has been retching on and off all day.  Very weak and tired as a result.  I have a call into his nurse's voice mail.

I'm giving him sips of ginger ale, etc.  We'll try toast later.

Is this possibly a chemo side effect?

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/28/2010 - 7:23pm
Replies by: killmel

Hi Bob,

 

I saw you post regarding you sayiing:  "Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors."

I am interested in knowing more about the VEGF clinical trial. Would you know the gov clinical trial number for this VEGF trial or any information/link where I can read about this trial.

You mentioned that if this trial failed then you would do IPI.

I am just curious why your doctor just does not put you on IPI???

There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial  which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??

What does your doctor say about IPI???

Thanks for replying

 

Good Luck

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Sherron's picture
Replies 3
Last reply 9/28/2010 - 7:09pm
Replies by: Janner, Sherron, KatyWI

Since his (July 2006) original Melanoma started as Nodular Melanoma on the lower right scalp, local recurrence 2 years later, then waited 1 year got it removed in August 2009.  And at time, we knew it had spread to the cervical lymph node on the right.  Since that time the cervical lymph node has got very large, and everything remained the same.  Then the beginning of September (2010), all of a sudden we have  a lumps in right chest area, one lump on the right side of back.....then all of a sudden, lumps on the LEFT SIDE (lower side area)  , one on LEFT  SHOULDER, and 2 more on LEFT SIDE OF BACK.  NOW ANOTHER ONE, IN THE FRONT OF his ear , again (LEFT EAR )..Also another one on his neck (the LEFT SIDE).  He also has 2 lumps in his upper thigh area (small ones), can't remember which side.  Hard to keep up with them, because they were coming so fast  .  Are all these lymph node or tumors, or somse of both.  MY question is did this spread through the cervical lymph node on the right side, or from the blood stream.  Since we have had no WLE, no SNB, no anything, is it likely that the Melanoma is already involved in the organs, possibly.?  I am trying to prepare myself for what is to come.   I am just trying to understand how it spreads.  I thought it mostly stayed on the same side.\This has been really scary since all this has happened within a 3 week span....Now, things appear to have settled down.

Thank you for your responses.

Take Care,

Sherron, wife to Jim

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skysar's picture
Replies 5
Last reply 9/28/2010 - 3:12pm
Replies by: ipi in DC, ValinMtl, lhaley, Jim in Denver, Anonymous

I haven't posted in a couple of weeks due to an acute bronchitis infection which flared up while I was at MDA the day after my first treatment.  Ended up in the ER on Sunday and was given fluids and 750 mg of Levaquin.  Developed a rash a couple of days into the antibiotic so we are not sure if it is from IPI or  the Levaquin.  My ENT switched meds to Doxycycline and my rash has progressed.  So for the last 2 weeks I have been very uncomfortable and my next treatment is Wednesday!!!

MDA did give me an antihistamine, which didn't do anything.  I have been taking oatmeal baths, using Sarna lotion, Benadryl, etc.  Today I am trying Doxepin, which MDA suggested.  I have been reading all the posts regarding IPI and the side effects have been mild.  I am hoping this rash is due to the antibiotic, which has happened to me in the past with a different antibiotic and not IPI.

My neutrophils did drop but not enough to not take the Temador.  Yeah!!!

 

Sue

Hotlanta

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Replies by: Love_Monkey, jtheisen29, Tim--MRF, King, Anonymous, paleskinisin

Rachael was diagnosed at 5 and has been NED since September 24, 2009.  We only have 9 more weeks of interferon and she's doing great!

I started a new project to help other families who have children diagnosed with melanoma.  I'm hoping it will be a place that new parents come come to, get their questions answered and not be scared.  I have linked this board in the "Resources" and would like to ask ya'll to keep this site in mind when you have parents of children come here to ask questions.

Littlest Warrior Spot

Blessings to you all!

Danielle

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Hi everyone,

  My WLE of 6/1 remains unhealed and my oncology surgeon is talking with  plastic surgeon for a possible skin graft...not sure this is the answer as I am not sure anything will heal well in the area....seems like my leg is "trashed" after my ILP of one year ago. Meaning of course the heavy duty chemo treatmetn I got burned out small blood vessels and nerves so oxygenation and blood flow to the area may be constricted. I am thinking of seeing a homeopathic physician and am seeking a second opinion from a surgeon in my own area that I knwo well and who knows me, who did my SNB and first WLE 4 years ago. I have thought about the hyperbaric chamber treatment but havent asked. My oncology surgeon said he knows some folks doing seaweed applications but I wonder about that with me as I am allergic to iodine and betadine. I am also latex sensitive so many bandages also affect my skin negatively. Just wondering what other folks have tried when wounds dont heal or heal very slowly. If course to top it all I have a dark mole that just popped up right near the unhealed wound that has a little lump under it...more melanoma? I told the surgeon about it but as he and I both think I will be seen in one to two weeks he wasnt jumping up and down about getting me right in there......UGH!!!!!

Thanks for listening and if you have any ideas give me a shout. Thanks!!

Vermont _Donna stage 3a

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fonteman's picture
Replies 8
Last reply 9/27/2010 - 4:27pm

Hi,

This is all new to me.  I just went to my doctor and had a spot on my neck removed.  After the biopsy they said it was in fact Melanoma and I go on the 25th to have a wider area excised.  They said the Breslow level is 1.27mm with margins or markers up to 1.5mm and a Clark's level III.  What I am wondering is should I be worried??  My dermatologist referred me to an oncologist and I am now waiting on that appointment.  I know nothing about all of this except what I have researched online and that can lead me to think everything is okay at the same time lead me to think everything in not okay.  If anyone could offer some advice I would greatly appreciate it.

Thanks in advance!

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