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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Laurie from maine's picture
Replies 19
Last reply 1/15/2013 - 7:31pm

Hi,

I have been told there is nothing left they can do.  I have been thru a lot and agree that we have tried everthing

I have a question I am hoping to have my body donated to medical research hoping it can help others in the future.(my body is full of tumors and I would assume they would be useful)   I am having a hard time finding  a list a website or something that will guide me as to how start the process of getting applications done so I can give them to the funeral home,  so that it is all set for when the time comes. 

hard subject but I am hopeful that my death at least brings some help to others

Thank you all for your help.  I have benefitted so much for everyones knowledge, kindness and truly family type caring.

Stay strong everyone!  You are all warriors!! 

 

I am taking the time I now have to enjoy every moment that I get to be here with family and friends

 

Thank you to anyone who has information about donating your body. My doctor had no information

Thank you

Laurie from maine

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My father, age 76, was diagnosed with stage IV melanoma in November after having a 3.5-cm tumor removed from his skull bone.  They could not find a primary, and his PET scan otherwise looks clear (no evidence of disease).  He also had a brain MRI and CT scans.  The doctors say they don't know whether the next tumors will show up in two months or five years, but they will show up.  He is about to start a two-week course of radiation at the tumor site and was given two options for further treatment: 1) observation (wait-and-see) and 2) clinical trial of 10 mg/kg ipi, 3 mg/kg ipi, or interferon.  He has Kaiser in the Bay Area, and we like his oncologist, but she is not a melanoma specialist.  Apparently there are no melanoma specialists in Kaiser Northern California, and she will not refer outside this region.  Here come my questions:

Is it worth seeing a melanoma specialist to discuss his treatment options?  He isn't sure whether trying to get into the clinical trial is a good idea, since he currently has no observable tumors and he feels fine.  The oncologist didn't seem to have any personal experience with the drug; she said she did not highly encourage it due to the side effects.  I saw from older posts that a lot of people like Drs. Daud and Algazi at UCSF.  We are willing to try them, but does anyone use or recommend any of the specialists at Stanford, which is closer to us?  Any ballpark ideas for a consultation fee for second opinions from UCSF or Stanford?  

Thanks in advance...

 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/15/2013 - 9:59pm

Curious on folks experience with Zelboraf.  Did you get warts while on it?  Did you get them in odd places where the sun doesn't shine?  And is it possible to get them even after you stop taking Z?  I see my derm soon so I'll ask him about them also.  Oh the things we go thru!  

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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From the information that we have been given, our optimism is fading quite quickly.  From the start of radiation 3 weeks ago, the largest of the tumors has grown 7x larger.  My dad is meeting with doctors now getting some more information, but nothing that has been said is positive.  She is on medication for the pain, and I have not been able to talk to her yet.  We all know she is a fighter, and I have no doubt that she will fight as hard as she can. 

 

I need some help from all of you.  I do not have her facebook password, and will not be able to post through my wife's until this evening.  Can someone please put a link on there for me? 

Also, if anyone has the web address of the online support group she is on, can you please email it to brandon.p.haley@gmail.com .  I would like to make a post there on her behalf. 

Thank you for all of your support, as it is definitely needed now. 

This is from Brandon Haley, what was printed on Caring Bridge....Let's keep Linda in our thought and prayers....I cannot believe this......

Take Care,

 

Sherron, wife to Jim FOREVER

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Tina D's picture
Replies 6
Last reply 1/10/2013 - 11:58am

Early in December, abt the 9th, I started to have an uncomforable feeling in my abdomen... felt like gassy pains, but worse. This gnawed at me for a good while, and I rationalized that it was just not a big deal. I also started running low grade temps, but just coming off the Zelboraf, kind-of paid little attention. On the 21st ( our daughters birthday) I came home from an errand, kind-of doubled over and hubby stood his ground INSISTING I go see the Doc...who sent me to the ER, who treated me symptomatically as a cancer pt and sent me home, by the 24th, I was in agony and very sick. Back to the hospital and admitted.Over the next week, every bowel test and numerous scans and exrays and cultures could not identify why my white count had soared to 25,000, temps elevated, could NOT eat anything, N/V and excrutiating pain. Finally it was decided reluctantly by my surgeon to do an exploratory lap with little hope on his part of fixing the problem. He removed lots of adhesions, but did not feel too confident that was the problem. Well... the following day, I could tell things felt different...my white counts dropped to 8 & temp was normal! Thank God! My appetite returned, and I FINALLY got to come home yesterday after a 15 day hospital stay. So, the Chrismas tree is still up, and will stay up until we are able to celebrate :-)  . Dr Linette said if I am able, come on for next ipi infusion as previously scheduled, so I will be heading there tomorrow!! Hemoglobin is very low from surgery ( they wanted to do a transfusion, I begged a chance to rebuild at home). I also got a port put in since I can not use my right arm for IVs, my left arm was SHOT by the time I went for surgery... so it will be convenient to have a port. I am thankful to be safely on the other side of this!! Off to St Louis tomorrow!! Never a dull moment.....

Tina

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dleonard's picture
Replies 0

Has anyone here tried Sylatron?

I have one spot left in our study--We would very much like to interview you, on the phone, for about 45 minutes.  I can offer to you $100, as a thank-you for your participation. 

Please call me (212.289.0087) or email me (pfcresearch@verizon.net), IMMEDIATELY, so that we can set up an interview with you, this week.

I promise that this is not a sales presentation, of any sort--strictly medical opinion research.

Warm regards,

David Leonard

Director

pfc Opinion Research

New York, NY

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Has anyone here opted out of any post-surgical, adjuvant, therapy?

I have two spots left in our study--We would very much like to interview you, on the phone, for about 45 minutes.  I can offer to you $100, as a thank-you for your participation. 

Please call me (212.289.0087) or email me (pfcresearch@verizon.net), IMMEDIATELY, so that we can set up an interview with you, this week.

I promise that this is not a sales presentation, of any sort--strictly medical opinion research.

Warm regards,

David Leonard

Director

pfc Opinion Research

New York, NY

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Anonymous's picture
Replies 2
Last reply 9/5/2013 - 8:13am
Replies by: JillK, lou2

and increase in diagnosis for men and women. . . . .

 

MONDAY, Jan. 7 (HealthDay News) -- Deaths from cancer continue to drop for American men and women from most racial and ethnic groups, according to a new report, with significant declines seen for lung, colorectal, breast, prostate and other forms of cancer.

"This is good news in that there is continuation of the decline in the overall cancer death rate," said Edgar Simard, a senior epidemiologist in the surveillance research program at the American Cancer Society. "The progress we are making in the fight against cancer is largely driven by the most common cancers in America."

Simard noted that the drop in deaths from lung cancer was in great part the result of fewer people smoking and better treatment. For colorectal and breast cancers, the decline in deaths also resulted from improved screening and treatment.

Not all the news from the report was good. Among men, death rates from melanoma skin cancer are on the rise and uterine cancer death rates are up for women. Death rates for liver and pancreatic cancer are also increasing.

For these diseases, treatment needs to get better if deaths are going to be reduced, Simard said. "We would like to have more research and more public attention to these cancers," he said.

The annual report was produced by researchers from the U.S. Centers for Disease Control and Prevention, the American Cancer Society, the U.S. National Cancer Institute and the North American Association of Central Cancer Registries.

"Our efforts in cancer prevention and control are working," said Jane Henley, an epidemiologist in the division of cancer prevention and control at the CDC.

Henley said cancer diagnosis and deaths could be further reduced if people would live up to their New Year's resolutions to quit smoking, lose weight, eat healthy, exercise and cut down on drinking.

The drop in cancer deaths began in the 1990s and continued as screening and treatments improved.

From 2000 through 2009, cancer deaths dropped 1.8 percent per year among men and 1.4 percent per year among women. Deaths among children also dropped by 1.8 percent per year, according to the report.

During that time period, cancer deaths for men dropped for 10 of the 17 most common cancers: lung, prostate, colorectal, leukemia, non-Hodgkin lymphoma, kidney, stomach, myeloma (a type of blood cancer), oral and tracheal cancer.

Among women, cancer deaths dropped for these common cancers: lung, breast, colorectal, ovarian, leukemia, non-Hodgkin lymphoma, brain and other nervous system cancers, myeloma, kidney, stomach, cervix, bladder, esophagus, oral, tracheal and gallbladder cancer.

In addition, from 2000 to 2009, diagnoses of new cancers dropped 0.6 percent among men and were unchanged among women.

For children, however, cancer diagnosis rose 0.6 percent, the researchers say.

For men, the drop in cancer diagnosis was seen for prostate, lung, colorectal, stomach and larynx cancers, but increased for kidney, pancreas, liver, thyroid, melanoma and myeloma.

Among women, the reduction in cancer diagnosis was seen for lung, colorectal, bladder, cervical, pharynx, ovarian, and stomach cancers, but rose for thyroid, melanoma, kidney, pancreas, leukemia, liver and uterine cancer.

For breast cancer in women and non-Hodgkin lymphoma in men and women, the rates of new diagnosis remained the same, the researchers noted.

Simard believes more progress will be made. "The future is bright as long as we continue to apply what we know about cancer prevention, control and treatment," he said.

CDC's Henley added that people can help prevent cervical cancer and cancers of the mouth by making sure young girls and boys get vaccinated against the human papillomavirus (HPV).

Right now, only 32 percent of girls have gotten the full treatment for HPV. "The [Healthy People] 2020 goal is 80 percent, so we have a lot of work to do," Henley said.

The report was published online Jan. 7 in the Journal of the National Cancer Institute.

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chalknpens's picture
Replies 3
Last reply 1/9/2013 - 3:12pm
Replies by: chalknpens, NYKaren, Swanee

Well, my three month follow-up in October was pretty good, with only a few spots on my face treated with cryosurgery. The six month followup today had a larger yield - five cryosurgery sites treated on my forehead, but also two biopsies done as well. One was the largest bump on my forehead, and the other was on the bridge of my nose. The biopsy results will not be received by the dermatologist 'til the end of this week, but I have an appointment with the skin surgeon early next week for a post-surgery check, and so if the biopsies show more cancer, I'm sure he'll deal with it then.

I moved my dermatology six month follow up earlier by four days because I was concerned about a few new moles at the site of the melanoma surgery scar (the "mark of Zorro" on my back.) I told him I was feeling a bit vulnerable, and he said not to worry about coming in sooner ... because, he said, you've had all three types of skin cancer and surgery for each in just the past six months. Basal, Squamous, and Melanoma ... all different sites, and multiple sites. You have reason to look carefully and come in when you're worried. The mole on my back was not cancer, which was the good news for the day.

I am not perfect, but I am enough.

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mmmax's picture
Replies 18
Last reply 2/26/2013 - 5:19pm
Replies by: POW, mmmax, Anonymous, Snickers60, Tina D, chalknpens

Hello,

Haven't been around here much in awhile. It has been 4ish years since my last run in with mm. Been checked evey 6 months since and have a appointment this Wednesday that has me worried for the first time. My doctor and I have been keeping a close eye on a pigmented lesion on my lower eyelid margin for years. No changes till about 2 months ago... So one more day and I will know if we are going back down the road. Here is a pic.. notice the dark spot thats new :( in the last few months. Hope it is not as it looks but it sure looks suspicious to me. At a minium going to have to have a tricky biopsy... 

 

https://docs.google.com/open?id=0B-qsqDcvqoiBZkdFcUZPU3JWd28

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Erinmay22's picture
Replies 6
Last reply 1/8/2013 - 11:59pm

I've been a patient at Sloan for over 2 years.  Tomorrow I meet with one of the trial doctors to find out about starting the anti-pd1 trial.  I finished my last dose of ipi Nov 27th.  Scans Dec 18th showed a lymph node still growing (I had surgery Oct 4th to remove part of my small intestine but they couldn't get this node).  

I did Zelboraf May-Sept and Ipi Sept-Nov.  Just wondering what questions I should be asking when I go in?  How soon do you think they would start the trial?  I know there is generally paperwork to fill out and blood work and scans.  I did just have a Brain MRI Dec 7th (which was clear) and CT scans Dec 18th - so hopefully those are within the window and I don't have to have them again so quickly!  

Also, anyone out there currently in Sloan's trial?  Thoughts/Comments?

Thanks,

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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slorlando's picture
Replies 34
Last reply 2/27/2014 - 7:03pm

Hello, this is my first time posting on this site so please forgive me if I am in the wrong place.

My 5 year old son had what the dermatologist thought was a pyogenic granuloma removed from his chin in early December via shave.  After the pathology report was received, he was diagnosed with an atypical spitzoid neoplasm.  However, the biopsy was showing characteristics of a benign tumor and melanoma at the same time.  The tissue sample was then sent to Sloan Kettering Cancer Center for an expert opinion and we are still waiting on the results of that pathology report.

We met with a plastic surgeon because the doctors want to my son to have the remainder of the tumor removed after the 2nd biopsy comes back.

I am confused about how these spitzoid tumors can behave in two different ways?

I haven't been able to find much info on the web when it comes to children with this type of condition. 

Any advice and insight would be greatly appreciated.

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Reneezd's picture
Replies 4
Last reply 1/8/2013 - 1:03am

Hello,

Does anyone know what amount of the water soluable Thiamin is recommended by Dr. Oz?

Any good ideas on treatment of Zelbraf rash?  

Still feeling a little overwhelmed by the nurse saying that Matt will be on the the PX866/Zelbraf until it stops working.  I guess I was hoping it would put him into remission.  I am reading posts now to find if anyone has had better luck with going off meds altogether after a certain therapy?  Any other homeopathic remedies?  Matt's melanoma is stage 3 and the doctors say it is "in his blood", not sure what that means.  He had a lump on his face that already dissappeared with the clinical trial meds and there were 2 spots on his lungs that were too small to biopsy which was the reason for doing the clinical trial and not the radiation they had initially prescribed.

Thank you,

Renee

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Alan Muir's picture
Replies 8
Last reply 1/8/2013 - 5:34pm

It's been over 3 years since Stephanie passed away.  I now have a new girlfriend.  Her daughter, age 26, was diagnosed with melanoma late last year.  It appears that she is stage III, as a few mm cells were found in her sentinal node.  Her onc is recommending LND and Interferon.  She's being treated at Bay State hospital in Springfield, MA.

Of course, my girlfriend is worried sick.  I'll do what I can for her and for her daughter.

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jennbe9's picture
Replies 7
Last reply 1/9/2013 - 1:41pm
Replies by: jennbe9, vivian, Anonymous, Reneezd

Has anyone had a melanoma in transit removed after a full lyph node dissection? If so , did you have to have a drainage tube?

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