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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Terra's picture
Replies 5
Last reply 7/14/2011 - 3:21am

On June 12, we had a new baby girl, our third girl!  She is healthy, happy, and most importantly she is a fanatastic sleeper!  The birth was very very easy and went well.  Derek had his first ipi injection the day before I was induced, he wasn't sure how he would do at the hospital, emotionally and physically, instead my sister came with me and quite honestly it was probably the most relaxing time I have had in a long time, they were unable to induce me until the next day and so we spent a quiet day in a private room and slept and talked and slept. 

As some of you may remember I had an awful time when I found out I was pregnant and Derek, feeling as though the end was very close, also has had a difficult time accepting that there would be a third child he may not see grow up, many of you responded to my emotional posts of what to do with wonderful words that I printed off the computer and kept with me for a long time.  While, she finally arrived and Derek is taken with her, he is still emotional and struggles obivously, but he thinks she is adorable. 

He has his third ipi injection a week wednesday.  He has been tired, headaches, and some flu like symptoms, but that is all.  I am crossing my fingers it works. 

Thinking of everyone who is here and dealing with melanoma.

Terra

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/12/2011 - 2:19pm
Replies by: washoegal

Hi,

How are you doing. I have not seen you post lately. Are you getting treatment & seeing Dr. Hamid.

Look forward to you posting

Mary

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scotito's picture
Replies 2
Last reply 7/15/2011 - 3:37pm
Replies by: nicoli, boot2aboot

brand new to vemurafenib - two weeks in - not so bad - but sounds like an idiotic question - but what exactly does it do to you that saps your energy?  and does anyone have a reco other than caffeine? 

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Linny's picture
Replies 4
Last reply 7/12/2011 - 9:49am

Today I had an ultrasound done to investigate an abnormality that was found near the surgical site of my lymphadenectomy duing a CAT scan. When I posted my initial note your words of encouragement helped keep me calm through the wait for the appointment. Can't even find the words to let you know how much that meant to me.

I had good news today! The abnormality was nothing more than a bulging blood vessel -- a result of the sugery I had done back in January. I felt a huge sense of relief when the tech said she was not able to spot anything. It took both her and the doctor to find the culprit. The Doc said the bulge was nothing to worry about and that it was part of the healing process. He also confirmed that I have absolutely no lymph nodes left in my left arm pit. The surgeon apparently got them all. :-)

So I'm still NED and pray I remain that way.

Linda

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/12/2011 - 2:25pm
Replies by: washoegal, Anonymous, Carver, ValinMtl

Hi,

I am a newbie & need you advice.

I had sugery to remove a 2cm tumor from my upper thigh 4 weeks ago. The doctors needed to go down into the facia of the muscle to get clear margins.

He did NOT put in a drain. I got  a very large seroma (fluid build up) on my incision that is not going down. The fluid is  around & on  my incision & it is very sore & sensitive.

On top of everything else, last week the seroma got infected so the doctor used a needle to drain the seroma to do a lab culture & put me on atibiotics.

I finally got some relief when he took out fluid for the lab culture but within hours the fluid came back. When I sleep at night with my leg elevated, the next morning the fluid has NOT gone done.

I have a appt with the doctor tomorrow so I would appreciate any experience/advice with seromas you might have. Is it too last to put in a drain? The doctor told me that draining the fluid out with a needle, puts me a risk for infection again.

Thank you for taking time to read my post & replying.

mary

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Jeanne's picture
Replies 3
Last reply 7/15/2011 - 2:25am

Is anyone aware of a correlation between melanoma and breast cancer?

Thanks

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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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