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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Erinmay22's picture
Replies 9
Last reply 9/14/2012 - 2:12pm

In May we found a small spot on small intestine. Started zelboraf end of may. Scans in July showed shrinkage. Scans done Monday show growth again. I wasn't surprised since my stomach had been having issues. So plan is to do surgery to just cut it out (which I wanted originally anyway). And start ipi on Tuesday.

So it's been a rough week. To top it off my poor dog Dublin got hit by a car while we were crossing the street on Monday night. He's ok. Just a messed up back foot. Poor guy.

Not looking forward to intestine surgery... But feel much more comfortable just having the spot cut out! I told my doctor my mom is still hoping its just parasites I picked up in Thailand .

Cheers!
Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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mama1960's picture
Replies 3
Last reply 9/12/2012 - 8:19pm

Will be going to MD Anderson for an appointment on 9/25. Was told to plan on staying several days and leave travel plans flexible. Hope they go ahead and do the surgery. I have not been on a vacation in years because I did'nt feel like I could afford to fly. Hope one trip does it.

It is what it is.

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frankMill's picture
Replies 0

"Forever, physical humans are saying, "give me the truth, give me the truth." And we say, there are all kinds of truths. Choose the truths that serve you. Now, there are a lot of people that would feel great discomfort with that. But the thing that we want you to hear about it is: there is a truth of cancer, and there is a truth of wellness. Which truth serves you? You can activate either of them within you, and make it your truth. Truths are created; they aren't static. They aren't conditions that exist that then it is your obligation to identify and catalog. You are the creator of your truths—and what you are living is your truth."

--- Abraham Hicks Hicks Hicke

 

I wish everyone out there the truths of wellness, hope, and courage.

Frank

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Ali's picture
Replies 28
Last reply 11/2/2012 - 3:39pm

Background: radiation and IL-2 in January.  Finished end of May.  End of June found 25 brain mets, and cancer all over the body.  One dose of IPI, began Temodar same day.  12 week post IPI scans came back today:

The nurse practitioner came into the room with the biggest smile on her face.  "Good news?"  I ask, as my smile starts matching hers.  "Yes, just read it."  She handed me the print out from the radiologist.

MRI Brain wwo Cont

"Just skip to the end."

IMPRESSION:

Interval near complete resolution of enhancement associated with multiple metastatic lesions.  Very faint residual enhancement associated with a right frontal parafalcine mass.  No new enhancing lesions, acute ischemia, or hemorrhagic metastases.

Me (kind of tearing up): "So this is uncommon, yes?" 

Her: "This like...never happens." 

She hands me the other report.

PET CT Whole Body

Again I skip the bottom.

Impression:
1.  Marked interval improvement suggesting treatement response having demonstrated between 50 and 100 hypermetabolic lesions on prior imaging, now demonstrating 4 hypermetabolic lesions.  Lesions include a right adrenal nodule, nodule superior to the right kidney, anterior mediastinal nodule, and right axillary node.
2.  Increased activity withing the right maxilla consistent with periodotal disease.  
3.  Multiple small metastatic lesions demonstrated on the prior MR of the brain are too small to characterize by PET.

You read that right.  4 tumors left.  None of them in the brain.

ARE YOU KIDDING ME???  I am still in shock.  I know I still have cancer, but lots less, and nothing new.  Such a good day for my little family!  Had to share!

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JerryfromFauq's picture
Replies 19
Last reply 9/15/2012 - 3:53pm

Two things, trying to go to Colorado for a daughters wedding.  @ have gotten delayed leaving because my bloodwork is so bad that they have requested that we not leave driving out until I get a blood transfusion.  Wife has to make wedding dress and other wedding wear after we get there.  I feel fair but always very tired and have been sleeping 10-14 hours most days.  My Oncologist wants me to stop taking the Gleevec for a while and see if the blood levels straighten out.  Hope to contact ya'll later, Good People.

I'm me, not a statistic. Praying to not be one for years yet.

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DebbieH's picture
Replies 10
Last reply 9/12/2012 - 1:16pm

I'm posting this to maybe give some hope to those who are recently diagnosed. 

11+ years ago I found that the tiny stage 1 "lucky to have caught it so early" melanoma had returned to my lymphnodes and I was now stage 3C.  I wasn't hearing much hope from my doctors or where I went for a second opinion.  They were wheeling me into surgery at Univ. of Michigan right after the second tower was falling in NYC so I missed most of what happened that day.  When I woke up I was told I had 3 positive nodes and one had matted and had extracapsular extensions going into a muscle in my back so that was also removed.  My surgeon said he just kept going until he didn't see any more black.  I wanted to do a clinical trial but a brain mri showed "something" there so I didn't qualify and so I did interferon and got through 9 months before I had to quit.  U of M won't do scans (at least not then, not sure if that changed) after stage 3 unless you have symptoms so I had no scanxiety and I think it was easier for me to get on with my life once the side effects of the interferon were gone.  By the way, while it was no picnic, I found it doable and I'm glad I did. 

In the past 11 years I've had 4 more grandchildren, acquired two more by our daughter's marriage, our daughter got married and is very happy and life is very good. 11 years ago I would never have imagined this.  There are plenty more like me on this bulletin board and if you were recently diagnoised, NEVER FORGET THIS.  I don't know what I would have done without this place and I thank the Pattersons for having the wisdom and compassion to begin this bulletin board in their sister's memory.  Never give up, never think of yourself as the number they all drill into us with their statistics.  Good luck to us all.

DebbieH, stage IIIC, NED 11 years today after interferon and no scans 

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becky15's picture
Replies 8
Last reply 9/25/2012 - 12:27pm

A few days ago I noticed a raised skin coloured lump on the underside of my right foot, near the ball of my foot. It is about 1 cm across. I visited my GP today who doesn't think it is anything to do with my melanoma (stage 1a diagnosed 7 months ago, 0.72mm breslow on my lower left thigh near the knee with zero mitosis and invasive radial growth phase even though "superficial" Clark level 4 ), seemingly on the basis that it seems not to be attached to the tendons etc. He thought it could be a ganglion or something to do with the tendon sheaths.

Now I've done some research on the internet, however, I've gone into meltdown as it seems it could be a subcutaneous metastic melanoma and would therefore be a recurrence and fast forward me to stage 4. I'm not sure that my GP has enough knowledge about melanoma to even know about such a recurrence.

I am pulling forward my 3 monthly follow up with my consultant dermatologist to this Thursday but, in the meantime, any words of reassurance would be greatly appreciated as I am falling apart.

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kpcollins31's picture
Replies 6
Last reply 9/13/2012 - 6:49am

First off, thanks to all the posters on here for the information and encouragement. I posted on here over a year ago (Feb 2011) when I was first diagnosed at stage 2C from something that looked like a wart on my left forearm... went through the WLE and sentinel lymph node biopsy - all clear. PET scan was clear. Life continued as normal with the exception of the oncology and dermatology followups.

Fast forward to 2 weeks ago - noticed a strange lump between my armpit and my elbow. Was not too concerned but asked my dermatologist about it since I had an appointment anyway. The next day I was talking to the oncologist (new one since I moved to North Carolina a few months ago). He did not think lymph nodes were in that location but he had me scheduled for a biopsy the very next day.

When they were doing the biopsy, they noted that it was a lymph node after they drew cells from it. At that point, my heart sunk a little. Then I made a comment about not expecting good news since it was a lymph node... dead silence in the room for about 30 seconds and at that point I knew. I had the weekend to come to terms with what I expected to hear and then heard today from the oncologist. The lymph node contained melanoma so I am now stage 3C.

Now I am being referred to a Dr. John Stewart at the Wake Forest Baptist Health Cancer Center in Winston-Salem, NC (about an hour from where I am in Mooresville). Not too many choices for stage 3 other than interferon which I have already decided against. Just going to try to keep a positive attitude and take one step at a time... none of us ask for this but we deal with the hand we are given. Seeing the long term stage 3 and 4 survivors on here is encouraging.

Kevin

  

  

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/11/2012 - 10:54pm

My husband (age 31) has Stage 3C Melanoma.  (Clark Level IV, 1,4mm, no ulceration, 2 positive lymph nodes extremely large in size that were matted together with extracapsular extensions in one).  He was diagnosed  in late February 2011/early March.  In early April he had a surgery to remove remaining lymph nodes in the area.

June-July 2011-  6 weeks of radiation to area

July 2011-2012- Interferon treatment

I have done so much research on whats to come, and the statistics are just heart breaking.   I've been to almost every single appointment, so I'm pretty well informed with everything; however, I just feel like there is so much information I do not know.  

I want to stay positive and think that treatment is behind us and the only thing to focus on now is follow-ups; however,  I can't get the stats out of my head.  We haven't had any discussions with doctors on the what ifs.... 

 

If it changes to Stage 4....

1) What are the treatment options- how long, effectivness, how does the side effects compare to the previous treatments

2) Less than 30% survival rate....what on earth do you have to do to be one of those few people that live a long healthy life?

3) Are there ways to get Life Insurance with such a late stage of Cancer?

 

I do not like the "wait and see" game... he recently had a PET Scan done, and we will have results next week...and the scan-xiety just doesn't go away.   He doesn't want to think of the what ifs and worry...which I"m glad he is staying positive and upbeat, but it makes me scared to ask these questions to his doctors because I don't want him to think I"m not being positive about everything.  I so much hope that everything will be fine from here on out,  but the stats...tell me something else. 

 

Is it possible to look forward for life to return to what use to be normal anytime in the future...or is this the new normal? 

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madeclaire's picture
Replies 6
Last reply 9/25/2012 - 2:59pm
Replies by: madeclaire, Charlie S, Jeff's Mom, Anonymous

Hello everyone,  I was originally diagnosed with mucosal melanoma (nasal cavity) in 2003.  It was a non pigmented lesion that began to bleed.  I then entered a vaccine trial and remained NED for 5 years but closely followed by an excellent nead and neck surgeion and an oncologist specializing in melanoma at Northwestern Memorial in Chicago.  I had a recurrance in 2008 and again had surgery which involved a partial maxillectomy (removal of some of the palate, teeth and jaw bone)  I was only offered interferon and chose not to take it.  Then I recurred again in 2011 and had more of the palat, teeth and jaw removed and received radiation.  6 weeks ago a scan can back with uptake in one neck node and several lesions in the liver.  I had tissue sent ot to be analyzed for mutations.  I waited two weeks only to be told that the results were inconclusive due to bone mixed in with soft tissue.  I decided to have the neck node removed and now await again a full molecular analysis of this tissue.  If I have either a C-Kit or Braf mutation my treatment options are clear and hopeful.  If not, my oncologist is offering me either  standard chemo, IL 2 or yervoy.  He also thought I should consider some of the trials out there.  I have been pcking through a list of more than 28 trials around the country and have narrowed it down to NIH in Bethesda which has a vaccine trial and also an IL 15 trial or the U of Chicago which is also doing a vaccine trial.  Does anyone out there have any info on better trials for someone in my situation.  As you all know when diagnosed stage IV and given less than a year to live without treatment it feels like there is a gun to your head.  I don't want to waste energy or look in too many directions at once, but I do want to make an informed decision on my next step.  I have two kids in college and would love to live to meet my grandkids.  I am also healthy and active and love life.  This board has been an inspiration to me for some time.  

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bron's picture
Replies 2
Last reply 9/11/2012 - 10:32pm
Replies by: kelsta78, Anonymous

hi again. 

still confused here.

i have contacted Jay from australia and he states, get a second opinion.

Have talked my daughter into getting a referral from her doctor to PA hospital (largest melanoma hospital in Brisbane).

Have talked to the PA and they are happy to talk to her.

Phoned  MPA - Melanoma Patients Australia and the phone was answered by none other than the CEO who was walking past.

He could not give me much information but promised to have someone phone me back.. Nothing yet.

I used the chance to complain to him about the lack of help and information available on melanoma and that i had to get my info from the USA.

He listened and stated he was meeting with members of Parliment later in the month on that very subject. So here is hoping something may get

moving... I am also amazed at the lack of knowledge about melanoma by the australian people... since this all started every single person i have met believes that if you have a melanoma it is simply cut out and thats the end of it... even one child care worker told me that...we need more public awareness here.

My questions if anyone would please help me are.

1.Can a CT scan show up small tumors...my daughters doctors told her its a waste of time at this point.

2.Should she have any blood tests at this time . have seen LHD levels mentioned.

3.is the fact that her pathology shows the melanoma is ULCERATED really serious.

4.Do all tumors in the body show up by enlarged lymph nodes or can you have tumors without swollen lymph nodes.

The info out there says tumors likely (if they show up at all) between 2 to 5 years after primary mel removed. However my daughters mel lesion was on her back for up to 2 to 3 years prior to surgery so how do they calculate this...

Sorry for all the questions but these are the ones i havnt found answers to with my research.

My daughter was breslow 2mm with ulceration on her back with a clear lymph node removal.. i think its called the sentinal  .T2BN0M0

thank you and very kind regards from bron.

 

 

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frankMill's picture
Replies 2
Last reply 9/11/2012 - 11:36am
Replies by: Anonymous, Janner

I just had a stage IV melanoma surgically removed from my chest last week.   Trying to learn as much about melanoma as I can. My melanoma is  MART-1 positive.  What is this?  Trying to get into the PD1 trial at Moffitt.  Is having MART-1 positive good or bad?

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AllyNTAus's picture
Replies 4
Last reply 9/11/2012 - 8:37pm

Hi everyone,

I am currently on Dabrafenib, the GSK BRAF inhibitor, and thought I was doing great, had good scan results in late July, but yesterday I found what seems to be a new lump in my left armpit, and have had some intermittent aching in that area for a few weeks, so now I am really scared that my scans next week will show that D has stopped working for me (after only 5 months!!). Hoping against hope that the lump is something unrelated to Mel but today I just can't shake that feeling of doom.

That has led me to start trying to find out about other options so I am ready to talk to my doctor next week should we need to have the conversation about alternative treatments. Obviously Yervoy would be one option (at very significant cost, but if we have to pay we will), but I have also been really encouraged hearing the good stories about anti-PD1. I had a bit of a search last night and came up with one trial listing in Australia, that is Merck's MK-3475 which is listed as recruiting. I might not be searching correctly but I couldn't find any other anti-PD1 trials listed in Australia.

Is there anyone out there with any experience of anti-PD1 in Australia? Would be grateful for any information.

Best wishes to everyone,

Allison

A bad day's fishing beats a good day's work everytime

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frankMill's picture
Replies 11
Last reply 9/12/2012 - 8:32pm

I was diagnosed on 8-17 with Stage IV melanoma in my chest, had surgery on 8-31 and am now NED.  So far, I've been treated at Baptist Hospital in Jacksonville, FL but I consulted with Dr. Jeffrey Weber at Moffit last Friday.   Both Baptist and Weber tell me that the chance of recurrence is 75-80% and that I should be on some adjuvant therapy. 

I am very impressed with Moffitt.  They have three trials, anti-PD1, Mage vaccine, and Yervoy.   Baptist has one trial that is randomized between Yervoy and Alpha Interferon 2b.   Dr. Weber strongly suggested the PD1 trial based upon my profile but I may not qualify (waiting on the results of the HLA-2 test).  The onccologist at Baptist suggested that I either get on their trial or start "Peg Alpha Interferon".  

This is a hard decision and it feels like I'm rolling the dice with my life. My gut is telling to roll the dice with PD1.  Whatever choice I make I need to feel good enough to be able to work on my computer from a home office.

Does anybody have any advice or personal experience they can share to help me with my decision?

Thanks,

Frank 

 

 

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jag's picture
Replies 1
Last reply 9/11/2012 - 10:00pm
Replies by: MeNDave
Insert Generic Inspirational Motto Here

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