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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Shelby - MRF's picture
Replies 1
Last reply 7/11/2011 - 11:32pm
Replies by: JerryfromFauq

A Washington, D.C. area television station contacted the MRF for assistance in setting up an interview about the dangers of tanning.  The station is looking for someone to interview about why they stopped tanning.  The reporter would like to find someone in their 20s who is available for an on-camera interview in the D.C. area.  The reporter is particularly interested in speaking to ex-tanners who have received a melanoma diagnosis.  If you’d like to be interviewed, please email Jenni@JonesPA.com by Wednesday morning. 

Thank you for your help!  We appreciate your assistance drawing attention to this issue. 

Shelby - MRF

 

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ValinMtl's picture
Replies 5
Last reply 7/21/2011 - 8:45am
Replies by: Vermont_Donna, ValinMtl, Anonymous

Hey Donna, haven't seen your name posted recently.  I trust all is well.  Just to let you know that I purchased the solaris tribute garment.  What a blessing...it saves my husband from wrapping my leg daily.  I can put it on myself!  Hopefully, the tumors will shrink and I'll be able to get back into regular 30/40 garment but for now I use the solaris tribute garment almost daily and nightly.  Quite expensive though!!  $1600...thank goodness, hubby's health insurance covers 90% although only up to $50,000 and that has gone down significantly during the past 3 years with all the meds and support hose.  Val xx

Live Laugh Love Nothing is worth more than this day!

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Sherron's picture
Replies 8
Last reply 7/14/2011 - 5:31pm

is the day I came  home and saw Jim on the phone.  He looked bothered, distressed, worried etc.  I knew it was going to be bad.  We had just been to the Derm on July 5th.....She told us, it was nothing!  But is was something, it was Nodular Melanoma on the lower scalp, and it was vascular invasive, with a moderate mitosis.   I will not into our story, you can read it on my profile, if you wish too.  Jim won his fight with Melanoma on November 30, 2010, when the angels came and took him home.  He will always be my warrior,my hero, my best friend, the love of my life, my soul mate, the wind beneath my wings, my everything.  He had 4 years + 2 months of absolutely great life living his way, "QUALITY TIME" with no treatment, except alternative.  He had 3 months of discomfort and pain. 

It is time for me to leave the wonderful Bulletin Board, because I tend to get too involved....it is time for me to try to heal, deal with my grief, without reading of others going into this battle...I will check in maybe 2 times a year, but not on a daily basis.  I want to thank each and everyone of you who encouraged me, did not balk at Jim's decision, but gave me support...That is what I needed.  He made his decision, and never looked back.  He is  IN a much better place and I look forward  to joing him someday...For now, I am going to try to live my life, best as I can, love my children, and grandchildren.

"This is the day the Lord hath made, be glad and rejoice in it"

"I can do all things through Christ who strengthens me"

 

I wish the very best for all of you...

Take Care,

Sherron, wife to Jim FOREVER

P.S.  sorry for all the underlining...I only wanted in in 1 place, but could not get it undone...

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benp's picture
Replies 5
Last reply 7/11/2011 - 8:38am
Replies by: shellebrownies, Lisa13, benp, Anonymous

Hi, 

 

I have recently been diagnosed with stage IV melanoma, mets in brain and smaller ones thoughout my body. Today I learned I was BRAF positive, so will hopefully be joiing a BRAF inhibitor trial starting early next week.

 

On reading the documentation for the study, I learned I could not eat grapefruit or oranges etc, must avoid herbal supplements (curcumin, geistein EGCG etc.). Does anyone know why this is? I could possibly imagine some reasons. I was thinking of doing IV vitamin C, though this obviously rules this out.

 

I would love to know if it is indeed harmful to be taking supplementation while on the trial.

 

Thank you for your help, 

Ben.

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Banu's picture
Replies 7
Last reply 7/12/2011 - 3:23pm

Hi everybody,

Because my father could not get access to Yervoy and lost a lot of time waiting for it, he was supposed to start carbo/taxol on Tuesday, July 5th. However, we had to go to ER on 4th of July, because my father could not have a bowel movement after 5-7 days and was very bloated and in pain. When the ER doctors checked the blood, they found out that his red blood cell count is very low (5) and they admitted him to the hospital for blood transfusion and treatment. So, he could not make it to his chemo appointment and his doctor said that we need to wait a few days and see what is happening with him before we can decide whether to proceed with chemo, Yervoy or any other option that may be of help to my father.

In the meantime, the primary care team at the hospital suggested that it is not a good idea to resuscitate my father if needed, because his prognosis is very poor. A doctor even told me that it would be better for him to pass away from a heart attack than endure cancer. When I told the doctors that we don't want to give up and try every possible option until the end, they advised me to be realistic. I know that the odds are slim, but there are those who were blessed with a response when it was least expected.

My father has been weak in the last few days and was not able to walk on his own yesterday and today. He is not using any pain medication and did not need one until now. He is not giving up and wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

My father is quite weak right now and was not able to walk on his own yesterday and today. He is not giving up though and I believe he wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

He had five units of blood transfusion and his red blood cell count is around 8.5.

His LD is 716 U/L, ALT 27 U/L and vitamin D > 135.

Doctors say that his LD levels are too high and that they don't want to remove tumors unless it is obstructing an organ.

I want to find a treatment that may be of help to my father. I need to get him stronger first, so that he will qualify for more treatments. Are there any suggestions? Would you recommend any supplements, products or treatments?

Thank you all for your guidance.

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Well unfortunately I was right. One was a pseudocyst with gelatinous material and no melanoma. The second was falling apart as the surgeon took it out and was. Reported as friable with fatty tissue and sheets of melanoma cells..

1 week post op I have a lump in the region where the bad lump came out. The oncologist thinks probably a hematoma related to surgery. Too fast for a 4-5 cm tumor to pop up. It also appears bruised on skin surface. Of course I'm worried about that tumor falling apart and having melanoma cells.

I had a long talk w D Samlowski who discussed treatment options. He thinks 1st choice should be biochemotherapy w chemo drug (which I can't remember name of) along w IL-2 and interferon. I've just started to read a bit and it sounds like there are different regimens. His regimen was 4 days in hospital ICU with above drugs followed by 3 injections of low dose interferon the following week. Two weeks off and repeat 3 more times.

Has anyone done this version? I will find out the chemo portion tomorrow when I call his nurse. Did it work? I don't think the month of high dose interferon did much since this came up so soon ( or maybe it's because I couldn't tolerate or afford the other 48 weeks). This will be at a lower dose and I will just deal with it no matter as I would really like to kick this melanoma to the curb and move on.

He is reserving other treatments in case we need them later.

Any thoughts? We didn't discuss radiation, but I have been thinking maybe the should be done as well? Or before biochemo?

Julie in Las Vegas

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Charlie S's picture
Replies 4
Last reply 7/11/2011 - 8:21am
Replies by: Carol Taylor, Anonymous, washoegal, Charlie S

A question was posed to me the other day by a  seeking melanoma patient for which I had no effective/relative  answer and  therefor would ask for your collective wisdom and input.

Here was the question:  " By all clinical indications, I am about to progress to Stage IV and I am personally scared to death.  My second marriage is not all that great anyway, but this is putting an additional strain on it and I do not know what to do to reconcile my marriage and my personal fears"

 

It wasn't exactly like that, but pretty close.  Though I have been there and done that, my insight might not really be relevant by todays perspective.  I'm just glad I am past this, but the person who asked me is not.

 

So, in the hopes that this person might read your collective wisdom. rather than my out dated point of view..................how  bout some input?

Cheers.

Charlie S

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ValinMtl's picture
Replies 6
Last reply 7/16/2011 - 8:53pm
Replies by: wgalinat, Terra, ValinMtl, Bruce in NH, Anonymous

Well, back from NIH -NCI in  Maryland.  They removed 2 masses in left groin (2 lymph nodes).  Now into lab to produce the white cells (TIL) that will be needed for trial.  Will fly back down for meeting to discuss which arm of trial I will be on.  Would prefer total body radiation arm but other arm is good as well. Thank goodness for Warren G.'s timely report on being healthy after 5 years! and for his kind assistance. I was so down about a month ago with not any other 'good' plan available in Quebec.  NIH happened to start up the same trial again in March and I was accepted!! 

Can't say enough about the treatment and wonderful staff at NIH.  Warren, you were right, I'm in good hands!

Val - stage IV (failed interferon, many surgeries, failed temodar, partial responder to ipilimumab but eventually removed from trial)    

http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

Live Laugh Love Nothing is worth more than this day!

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trishahimm's picture
Replies 13
Last reply 8/10/2011 - 4:21am

I am new to this, and my post might end up a little long, but please, any information will help.

My 59 year old father was diagnosed with a large malignant melanoma on the ball of his foot in May. It had been growing there for months before he finally had it tested. His GP told him it looked like he stepped on something and to put neosporin on it in August last year. Instead of going back after a few weeks when it didn't go away, he just put Neosporin on it everyday for months as it continued to grow larger. I knew nothing about this until May when he was diagnosed. A month ago, he had the tumor removed and plastic surgery to hopefully keep the foot usable. Before the surgery, the surgeon was very bleak about my dad's prospects, saying that it was a particularly rare type of melanoma and to basically start to think about how he wants to be cared for at the end. We were all panicked, but then the PET scan was clear, so we were then very excited that it was just in his foot. They removed 5 LN during the surgery from his groin area, we thought just as a precaution since the PET scan was clear. I didn't know until later that the PET scan doesn't show cancer in the LNs. A week later after we were all celebrating his good luck, we got the news that 4 of the 5 LN had cancer and that he needed another surgery to get the rest of the LN in his groin and thigh area, and then he would need immunotherapy. This next procedure was postponed several weeks due to the extensive wound on his foot.  Finally on Friday, they did a radical lymphadenectomy. We also found out Friday that the 4 cancerous LN they already took out were black. The dr said she removed extensive tissue from mid thigh up into his abdomen. There were several additional black LN found, one of them "deep in his abdomen" and that she took out as much as she possible could with this surgery. She said they have decided they will now do radiation on that area before they start the immunotherapy. She told my mom that they will do all they can, but that they found this very late, and that we are "behind the 8 ball now". My mom just blows her off and calls her "Negative Nancy" all the time and doesn't seem to want to hear any of it. She is of no help at this point in the discussion.

I have read so many positive posts of you all living years with melanoma or even cancer free, but the Dr told my mom if we look online, that we cannot compare, as his melanoma is different than what we will see on the melanoma sites. What does that mean? What info can I give you that might help me find others that have this "rare" melanoma? I have the pathology report from his biopsy that has some info on it that I tried to look up last month, but what denotes that it is a rare kind? Also, what stage is he? 3C? or since they found all the other nodes does that mean he is stage 4? I am confused. Any information will be appreciated, I want to understand what we are up against and what questions to ask the oncologist this week. My dad has practically given up already.

Trisha in CA

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mom3girlsFL's picture
Replies 3
Last reply 7/10/2011 - 1:25pm

Good Morning all,

I was off enjoying a much needed vacation with family in the mountains of Georgia this past week and had a question.  Since my radical groin dissection (Sept 2010, I think) I have had very minimal swelling - surprising my surgeon even.  I did end up seeing a lymphedema specialist who released me after 4 visits b/c I really wasn't having any issues.

Fast forward to vacation and out of nowhere I am swelling pretty good.  From my toes up to about my knee, possibly a little further up.  Elevating my leg is not helping much.  And, of course, since I have had no issues I did not bring my compression shorts on vac with me.  Now that I am home, I've elevated and put on my shorts, with little improvement.

Of course I am worried something may be going on.  Anyone with similar experience?  Should I call the lymphedema specialist tomorrow or my onc and report the new symptom?

Thanks, as always, for your help.

Laurie

Do not fear tomorrow, God is already there.

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DeniseK's picture
Replies 13
Last reply 7/10/2011 - 7:15am

Hi All,

I had a couple questions about tests that should be done to determine if the Melanoma has spread.  At this point I've had my surgery, SLN which was negative.  I just had PET Scan and Brain MRI and they came back clear.  I'm going to see specialists at the Northern California Melaonoma Center in San Francisco either this Wednesday or next.  But I have yet to see an oncologist.  My tumor was breslow depth 14mm clarks level V and ulcerated.  My stage is IIC with a high risk of recurrence.  My questions are what other tests should I have done?  What about a LDH level in my blood?  Shouldn't this be done?  What if the Melanoma went to the bone?  This is concerning to me because my MM was on my chest wall.  Also someone told me that PET scans can't detect tumors smaller than 5mm.  Is this true?  How often do you get PET's in the first year?  Thanks for all your help!!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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nicoli's picture
Replies 1
Last reply 7/13/2011 - 11:03am
Replies by: TracyLee

Keep us updated. Just like I tell my kids.............if you don't keep in touch, I tend to worry.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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lhaley's picture
Replies 7
Last reply 7/11/2011 - 2:34pm

CLEAR!!!   That means I'm now 5 weeks NED!  However, there is always a however, my onc is leary because the location is so close to the last recurrance, and that recurrance is just .5 inches from the one before that. They are still going to excise the lump entirely to be sure.  I'd rather proactive instead of reactive. Radiation will start again once the lump is entirely excised.  They didn't excise the first time because we had decided since surgery had just been 4 weeks before that if it showed to be mel I was going to go systemic with a low tumor burden.

So, until proved otherwise.... I was NED at my stage IV 5 year anniversary!! 

Linda

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NYKaren's picture
Replies 4
Last reply 7/10/2011 - 1:59am

I had my 3rd Ipi infusion yesterday.  I posted about it when I came home, the computer ate my post, then I went to bed.  

I've shared my stomach issues (and I did mention to Dr. Wolchuk that some docs are prescribing Immodium for on-going issues, and he said that it's in the physician instrustructions that they all recieve that Immodium should only be used 2 or three times and if it continues to go onto the Entocort.  It's so weird being on a drug that's so new that not all the docs treat the side-effects the same way--even if they're in the same hospital.)

I now have a mean Ipi rash on my torso.  First you can barely see it, but once I start scratching, it's huge.  They prescribed something like Kenalog creme; doesn't do much & can only be used 2x/day.  The rest of the day I use Eucerine, Sarna, etc.   I was taking Zyrtec & Benedryl, but can only take 2 benedryl at night. Today I told them it's getting worse so they prescribed a stronger antihystimine.  I gotta tell you, being on Ipi sure gets my phone calls returned fast.  They practically want to know if I sneeze twice in a row!

ANYWAY, when he saw the rash, Dr. W was so happy!  He said it looks like I'm definately responding and he's also excited about the white that's running all throughout the melanoma itself (it's on my temple/upper cheek).  He said that he hopes it will start flaking off soon.  From his mouth to G-d's ears!  Even between my first & second infusions, it was starting to spread again, and it's been stable (at least visibly)  since the second infusion.  The radiation had initially stopped the spread, but that didn't last long.  But it did buy me some time from when the Ipi was approved until it was actually available non-trial use, so I guess it did serve some purpose.

I was excited to get my appointment for 3 weeks and a PET scan app't for 3 weeks after that.

Boy have my priorities changed.  My husband has liver disease, and now I pray that both of us will be alive to hold our grandchildren.  My kids (21 & 23) know how much I adore babies/children and they've always teased me that maybe I don't want them to wait to get married so I can be a grandma.  (I do.)  I always took it for granted that I would see my children get married and have children of their own.    I WILL BEAT THIS.

Have a good weekend, everyone.

karen

 

Don't Stop Believing

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Tim--MRF's picture
Replies 3
Last reply 7/9/2011 - 3:53pm
Replies by: MaryD, Cid FLA, Nicky

A melanoma patient was featured on the Today Show this morning.  Doug Schwenker and his wife, Tara, came to MPIP for information during his treatment.  Here's the clip:

 

 

http://today.msnbc.msn.com/id/29054368/ns/kathie_lee_and_hoda/#43670441

 

Tim--MRF

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