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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Melanoma Mom's picture
Replies 64
Last reply 6/29/2013 - 11:08am

First off - I am not a medical expert .... I am just a Mom who has a 14 year old son who was diagnosed with melanoma this past September. While it had not spread to his sentinel nodes, the lesion was 14mm so we're talking serious melanoma. He starts Interferon on Monday, Dec. 13th.

I wanted to speak with a physician who would complement the amazing team we work with at Dana-Farber. I  was able to meet with a physician in my area that has become very interested in the nutritional approach to curing cancer and other illnesses, after his own cancer diagnosis in the 1990's.

While nothing is 100% certain to help inhibit melanoma, these are some of the herbs that we spoke about. Dr. S was also extremely supportive of eating a healthy diet with foods that would contain many of these vitamins/herbs. But because I am dealing with a teenager, it will be easier to approach some of these from a supplemental  approach, while also planning to instill new recipes into our evening meals. (Indian, etc.)

I have two sources of information - "The Definitive Guide To Cancer, third edition" by Lise Alschuler and Karolyn Gazella. I have an article titled, "Nutrition and melanoma prevention" published in 2010. If you would like a copy of this article E-mailed to you, please leave your E-mail as a reply and I can send it to you. The book is readily available at bookstores.

After studying the literature, the supplements that I plan to add to our son's diet are:

CoQ10

Curcumin

Panax Ginseng

Vitamin D

I toyed with Fermented Wheat Extract (not germ!) - also known as Avemar - but the cost is extremely high - about $200 for a month's supply - so I won't be starting with that initially. 

I would suggest any supplements that you add to your diet should be presented to your Oncology team. I am thankful that our son's Oncologist supports these extra measures. 

So, no major rocket science going on here, but it's worth trying!

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dian in spokane's picture
Replies 9
Last reply 12/13/2010 - 8:18am

Done! I am done! It seemed like the wait to get my first shot in this trial was endless, but the 6 months of actual treatment has flown by.

Today I got my last shot, and went into the trial record books as a success, or at least not a failure<g> It's only been the last couple of shots that had a reaction before I left the hospital (I have to stay for the first hour) Today, as expected, my skin reaction was much more pronounced. If things go as expected I'll have my worst swelling so far, and I''ve been warned to watch for systemic reactions. But I am just a few blocks from the hospital, so I am not too concerned about that..only about the swelling to come. I am icing my thigh and have cozy clothes and no demands.

We are staying overnight here, then driving back to las vegas tomorrow and I don't have to fly again till monday, so hopefully by then the swelling will be down.

We've made quite the trip out of this LAST trip down here. We flew into Las Vegas to have a couple of nights of Hannukah with bob's dad ( I need to update the off topic board on Joe!) then drove down here on tuesday. This last visit included a skin test, which we did on Wednesday morning. This is a simple thing, a tiny injection just under the skin on the arm. then they mark it and 'read' it 48 hours later. So we did that and had all afternoon Wednesday and all day Thursday to hang out at the beach! We are staying on the Balboa Penninsula, and we've had a dandy time escaping the 2 feet of sloggy, refrozen snow in Spokane.

Along with the skin test on Wed., they drew blood. About 3 or 4 vials in my blood just stopped flowing, and so I got jabbed a few more times before they had success getting a vein for the OTHER 4 vials. yikes!

Today was my last visit to the Hoag. The rest of my followup will be done via phone calls and emails. And my doc will be sharing scan reports and labs on a certain schedule..every 6 months I think. My next scans aren't scheduled till March, unless my local Oncologist decides to move them up to January. I see him next week.

I will keep my fingers crossed that this vaccine has been effective for me. I remained NED a long time (11 months) while my cell line was growing, so I'll never know, if I stay NED, if it is because of the vaccine, or if I would have stayed NED anyway. But I am constantly reminding myself that it's been over 2 yrs now since I moved to stage IV, and 19 months now that I've been NED. It's a fabulous thing to be thankful for.

Dian

 

 

 

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kel's picture
Replies 7
Last reply 12/24/2010 - 12:43am
Replies by: lhaley, kel, Carmon in NM, LynnLuc, Anonymous, bcl

I know everyone feels it; the usual anxiety right before scan time.  I was wondering up until yesterday why I was so cranky and short tempered.  DUH.  I've had so much radiation that no baby should ever sit on my lap!! :)  As many of you have aptly said, it's more difficult each time to bounce back from the last recurrence, and to get oneself geared up for the next scan.  I've had 1 primary, 6 recurrences, most recently 4/10 in lung.  I've had a chest tube removed without the benefit of drugs (hold your breath!!), a cage with screws around my head for gamma knife after a craniotomy (that was fun), lymph nodes under left arm are gone, 3 thoractomies, 2 clinical trials,and a VATs surgery.  .  But everyone here is in the same boat.  Thank you all for allowing me this opportunity to vent.  It does give me solace to have this BB and people like me who are pissed off with MM.  Cheers!!  I'm hoping not to be spending this Xmas in hospital, but instead, surrounded by my beautiful family and my wonderful friend NED.  laugh

never, never, never, never give up ~~Winston Churchill

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Rick W's picture
Replies 7
Last reply 12/15/2010 - 12:26pm

 

Links to recent MM research  related articles - all from Year 2010

Cheers,

Rick W

 

International clinical trial tests targeted drug for melanoma

 

Gene therapy for metastatic melanoma in mice produces complete remission

 

Melanoma drug shrinks brain metastases in phase I/II study

 

Melanoma uses body's immune system to spread to lungs

 

DNA repair capacity identified those at high risk for non-melanoma skin cancer

 

Study shows patient-specific vaccines for metastatic melanoma may induce durable complete ...

 

'Co-conspirator' cells could hold key to melanoma prediction, prevention

 

New targeted therapy for advanced melanoma associated with 80 percent response rate

 

The evolution of melanoma diagnosis: 25 years beyond the ABCDs

 

Melanoma rates among minorities in Florida differ from national trends

 

Professor discovers way to slow the growth of malignant melanoma

 

Researchers identify key enzyme in melanoma cell development

 

Tumor target suggests personalized treatment for melanoma

 

New treatment method safe, effective for advanced melanoma patients

 

Interleukin-10 a prognostic factor in treatment with autologous melanoma vaccine

 

U of M study definitively links indoor tanning to melanoma

 

Indoor tanning beds increase risk of melanoma

 

Wistar scientists explain the persistence of melanoma through 'dynamic stemness'

 

Researchers find melanoma not caused by early UVA light exposure

 

Clinical trial to test whether vaccine can effectively treat melanoma

 

Late-stage melanoma results in economic burden

 

The sound of melanoma can help doctors find cancer

 

Melanoma transcriptome reveals novel genomic alterations not seen before

 

Melanoma stem cells' evasive talents

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Vermont_Donna's picture
Replies 3
Last reply 12/10/2010 - 5:27pm
Replies by: Fen, ValinMtl, lhaley

Hi,

Got the wound vac yesterday....need to have the dressings changed M-W-F.My leg already feels better with this "negative suction". I also was seen bythe hyperbaric oxygen chamber treatment doctor...I am a good candidate for this too...can do both. The new chamber has a clear top so you can see out and you can watch a movie. The old one has a solid top and you can only listen to a book on tape...that would be ok with me too, but being able to see out for me would be good. Plus I would need some ativan!

I am going to see another oncology surgeon at DHMC who is from MD Anderson...see what he might think about my course of treatment, what other suggestions since, amputation seems to be so popular among my docs. (Not me).

I have found three new melanoma spots on my leg, so am feeling discouraged. Thank God I am doing Ipi! I am going to see a naturopath for some different ideas and see what I can blend in to what I am doing.

Thanks for listening everyone!

Vermont_Donna

stage 3a

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Lori C's picture
Replies 1
Last reply 12/9/2010 - 9:51pm
Replies by: washoegal

I am continuing to read this board and praying for all of you fighting this disease.  I am having a rough time since losing Will, as I had no idea what it was like to lose someone as a caregiver.

Before Will got so ill last April, we had just begun  working on a film project about his life - we'd hoped melanoma would be a bump in the road.  It turned out to be a wall that we could never quite get past.   Will quickly became too sick to continue with the project.  I had already written a number of articles about him and his remarkable spirit and courage and life, and am trying to continue work, this time on a book. 

I am trying to capture and describe the emotional pain of this illness and finding myself at a loss.  If anyone on this board would be able and willing  to contribute their thoughts on this subject, I am asking you to please email  me at Brennan07 at aol.com 

No one's name or identifying information will be used unless you specifically ask that I do so, in which case I'd be happy to oblige.  This board was my support during Will's fight.  Will, though, was quite isolated except for me, until someone from this board read about him and offered to talk to him.   As I've mentioned, he was a person with a disability (labeled mildly cognitively impaired, a label I thought was very inaccurate - he'd had what was likely a prenatal stroke and suffered a series of misdiagnoses and educational malpractice experiences).  For months, I tried to find him support through various organizations - all the likely suspects, and then some.  I could not.  I could not find support groups or a therapist who would take him on.  The person from this board (and if you are reading this, I can never, ever thank you enough)  was the only other person with melanoma he'd ever met, and was an immense blessing.  But the emotional toll of this disease was devasting on both Will and me.  I want to make sure I write about it with the respect and accuracy it deserves.

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scots's picture
Replies 7
Last reply 12/10/2010 - 11:54pm

I finshed the HD interferon on Monday.   That was a tough 4 weeks.   I still feel almost as bad as I did while takeing the HD.    I'm getting ready to start the 11 month low dose regiment which I'm not looking forward too.  Hopefully the LD will not be as bad as the HD.

 

Scot

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MomwHorses's picture
Replies 30
Last reply 12/17/2010 - 5:17pm

So as luck would have it, yesterday I decided to wear a short sleeved shirt on a 20 degree day for my appointment with my gynecologist because I wanted to minimize my weight.  As I was washing my hands that morning I noticed a purple spot on my arm - I tried to wash it off.  Then I realized it was not going to wash off.  So I immediately think "skin cancer" since the spot doesn't look like anything I've ever seen before.  Later my gynecologist says the spot "gravely" concerns her and to have it biopsied immediately.  Fortunately I was able to do so today.

However, the dermatologist  wasn't very talkative.  He really doesn't want to say much until the results come in.  But I'm thinking he knows whether it's likely to be cancerous.  Thankfully I did think to ask, "Well if it is cancer, what type would it be?"  To which he replied "Melanoma" and quickly started talking about something else.  So, my questions are - If it is melanoma, how fast does it get to stage 2?  I feel fairly certain of these results since the doctor could identify actually what type it would be by it's appearance..  I looked at my pictures from this summer and the spot was there in July - only smaller.  It measures 6 mm by 10 mm. 

So, can the size determine how likely it is to have progressed?  Can having had the spot for over 5 months mean it's most likely to have advanced if it is melanoma?  Or is more than 5 monhts not so long, and 6 x 10 not so big?

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Anonymous's picture
Replies 1
Last reply 12/12/2010 - 11:34am

http://www.clinicaltrials.gov/ct2/show/NCT01248936?term=ml25597&rank=1

 

Patients must have the BRAF V600E mutation, failed prior systemic treatment and no symptomatic brain mets.

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Everymoment's picture
Replies 9
Last reply 12/9/2010 - 10:35pm

Hi guys,
So I have had four primaries and I feel like I am just waiting for something to go wrong. One cell had to have gone through. Why is it that a 9 year old has to have melanoma in her brain and I am still here? I wait each and every day to feel a swollen lymph node......it should be happening to me...I had vulvar melanoma .... I just don't get this disease.....will it wait until I'm happy and I have my first kid to strike !!!!! When!!!! I'm ANGRY that this has taken over my life....I actually think about whether I will make it through a Phd program if I start...Errrr.
Everymoment

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BarbieGirl's picture
Replies 29
Last reply 5/17/2014 - 11:38pm

Diagnosed on my 39th birthday (in October), and had the wide-excision on Dec. 8, 2000.  There was melanoma in-situ found, but the doc got the margins.  (I would have preferred NOT to have had any mel show up in the WLE, but that's the purpose of it!) 

Never, ever, ever did I believe I'd still be alive and kicking today.  I didn't change a thing, other than appreciating life better and not taking things for granted.  I eat what I want, I like a little coffee with my sugar and cream, I'm a coke-a-holic (the kind you drink, not snort!),  I smoke, take lots of meds, get very little exercise----you know, all the BAD things.  Figured if I was gonna die, I was at least gonna enjoy my time left.

The only thing I asked God for.... was to let me live long enough that my grandkids would remember me.  They're now 4-3/4, 5-1/2, 9-1/2 and 11-1/2. (You know how important those halves and quarters are with kids ages!! haha!)  Thank you, God, for allowing me to still be around!

Guess I'll be around to annoy ya'll a bit longer!! =)

*hugz* and love to all who have followed my decade-long journey!!

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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My oncologist is sending me to  Lee Moffitt Cancer Center in Tampa FL, was wondering if anyone has been a patient there, any good Dr. referrals?

Thanks for any info :)

Pennie Mills

embrace the positive

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Rocco's picture
Replies 10
Last reply 12/9/2010 - 2:19pm

Time again for my 3 month CT and MRI this Saturday. I have more than the usual amount of anxiety this go round given the stories in the news and a close friend of ours loosing her battle.   We were blessed last month that my husband's scans (kidney cancer) came back clean.  We're hoping to make it 2 for 2 with mine.  That would be the best Christmas gift of all.   Any of your good vibes or prayers would be welcomed at this time.

-Rocco, Stage IV since Aug 2005

Luke 1:37

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lhaley's picture
Replies 15
Last reply 12/10/2010 - 10:35pm

2 months ago I had surgery for 2 different sites.  Today I had PET/CT scan.  This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm.   Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions. 

We looked back at previous scans and in retrospect it could be seen as a spec in Sept. of 09. I guess the good news is that it's slow growing.  Meanwhile I got back the testing on the tumor that was removed and I am B-raf positive.

My history is a bit unique. For those of you who don't know I was originally diagonsed in 79' with my first recurrance in 06. Since then I've had 1 recurrance in breast, 2 in bladder, 1 in lymph node under clavicle, 1 in lymph node in arm and now this. Because my immune system has slowed everything down, my mel specialist is leaning towards immunitherapy at this point to give my system a boost.  I guess dicisions are being made in 3 months.

Sure wish I could have been happy dancing tonight.

Linda

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/12/2011 - 12:54am

Hi All

I am interested in any feedback regarding the GSK BRAF/MEK combo trial. Anyone in this trial??? What are the side effects & how are you managing them?? Thanks so much for your feedback.

http://clinicaltrials.gov/ct2/show/NCT01072175

 

Wishing everyone a lifetime of NED

Jan

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