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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Gene_S's picture
Replies 21
Last reply 9/18/2012 - 1:37pm
Replies by: jordangurnzz, Anonymous, frankMill, natasha, mlbjab
After watching this video preview,
 
Healing Cancer From The Inside Out - Preview
 
 

I located a copy of the DVD and here are some of the numbers mentioned for melanoma patients.

It should be noted that these numbers are from 1995 when there was no successful treatments. 

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Stage II Malignant Melanoma
 
39% alive after 5 years (typical diet and conventional treatments)
 
82% alive after 5 years (plant based diet with no conventional treatments)
 
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Stage IV Malignant Melanoma
 
6% alive after 4 years (Conventional treatment and typical diet)
 
39% alive after 4 years (adopted a 100% plant based diet)
 
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Stage I & II Malignant Melanoma
 
That adapted a 100% plant based diet had a 100% survival rate after 5 years
 
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Stage III Malignant Melanoma
 
That adapted a plant based diet had a 71% survival rate after 5 years.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Angela C's picture
Replies 3
Last reply 9/13/2012 - 10:34pm
Replies by: gabsound, Phil S, aldakota22

Hi everyone.

Just wanted to put out an update. I did the IL-12 TIL trial at NIH in April. I had three months of stable scans. Last month's scans showed slight growth of my adrenal tumor and now this month's scans showed a new 5mm brain met. UUUGGGHH. I've had one other brain met and that was a little over a year ago. I had SRS and it took care of it. So, now I'm needing to do SRS again for this new met.

I'm not sure what the plan is from there. The doctors at NIH will be discussing my case next Monday and what they think I should do beyond the SRS. Since something new has shown up since the TIL treatment, they are thinking it's probably good to move on to something else. The possible options mentioned at this point have been a reinduction of Yervoy, IL-15 and another TIL trial.

Other than the brain met, my other tumors were pretty much holding steady from last month. Perhaps a tiny bit of growth in the main tumor in my adrenal gland. It's so frustrating that if the brain met wasn't there, I'd just get to keep moving forward with my monthly follow ups. But, now I need to move on to something new. Fun fun. The brain met caught me by surprise. I guess I should know by now that there is no rhyme or reason with Melanoma and it can show up whenever and wherever it wants to.

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Richard_K's picture
Replies 6
Last reply 9/14/2012 - 2:05pm

 

I had my routine scan and blood follow-up today and was told my bilirubin took an unexpected upward movement.  As a result, I have been taken off Zelboraf and will have my blood tested again next week to see if it improves.

If there are any of you who have experienced this phenomenon, did your bilirubin return to normal limits after a “drug holiday”?  I would appreciate any information.

Oh yea, 30 months on Zelboraf my scans were good. 

Dick

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Community Health Resources Center is presenting the final lecture in a 3-part series on melanoma, details are as follows:

Date, time: Wednesday September 26th, 5 - 6:30 pm

Presented by: David Minor, MD . This lecture will address the advanced stages of melanoma and treatments that are available during stages III and IV. The most current research will be reviewed. Refreshments provided.

Location: 2333 Buchanan St., Level A Conference Room, San Francisco, Ca 94115

Cost: Free! Any donation contribution welcome, $10 suggested

Registration required: Call 415-923-3155, or email cpmcchrc@sutterhealth.org

We look forward to seeing you there!

Community Health Resource Center... the next step to better health

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I told my psychologist that, following the fifth surgery, and the not yet faded scar of the first and largest wound on my back, I am feeling defeated at the prospect now of every three-month dermatology check-ins, and the ongoing six month neurology MS check-ins, and the monthly visits to other doctors (osteoporosis, scoliosis, and thyroid monitoring.) I cannot afford to see them all this much ... co pays are exceeding our limited pension income. My husband has just today filed for his social security, as my 30 year pension is not enough to cover all these medical costs. So add worry about bills to all the rest.

I just want to walk away from my extended family; siblings don't seem to understand that melanoma and surgeries on top of MS weakness and depression (and a very tight budget ) doesn't leave me in a 'let's get together at a restaurant' mood.   I'm so tired, and so down, and so hurt, and so confused. I feel damaged by the surgeries, and worn out by the summer.

Does anyone else here have reddish/purple scars that are Z shaped and seven or eight inches long and two to three inches wide in shape? I have two like that, one on my back and one (a bit smaller) on my forearm (that one is very visible.) I didn't think the scars would bother me, but they do ... I feel like I was attacked and marked by a gang. No one sees my back but my husband, but still it bothers me. Why is that?

I have more for them to find - moles or age spots that are changing on my neck, and on my upper chest. One site has begun bleeding each time I wash it, but I see the dermatologist next month, and will wait 'til then.

This post is disorganized, as I am. I just can't keep my thoughts straight. Best I can do.

I am not perfect, but I am enough.

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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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