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.

Expand/ Collapse Topic
 
Replies By
View Topic

Hi everyone,

If you or someone you know has experience dealing with metastatic or unresectable melanoma we would like to learn from you.  We are hoping to speak with both patients and caregivers over the next 2 weeks, to help better understand the complexities of dealing with this devastating disease, in order to create programs and communications that better serve your needs.

If you are able to participate and would feel comfortable discussing this disease with us, please email melanomamr@yahoo.com. Everything discussed will be kept completely confidential and used for research purposes only; we will provide you with compensation for the discussion.  

Thanks! 

Login or register to post replies.

natasha's picture
Replies 17
Last reply 9/5/2012 - 2:05pm

Hi dear friends!!!

    Sorry for my silly question,but - can I use sauna or steam rooms with my melanoma diagnosys.

It really helps my bad back ,but my friennd told me it can be dangerous for me.

Can anyone give me some advice ,please?

Thank you very much

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 9/5/2012 - 2:00pm
Replies by: natasha, Anonymous, Janner

Hi everyone,

Just yesterday I was diagnosed with malignant melanoma. The pathology report said it was the superficial spreading type, was not ulcerated, had a Breslow thickness of 0.28 mm, Clark's Level of 2, only radial growth phase present (no vertical), and a mitotic rate of 0. Overall, I was diagnosed with T1a. The report then went on to mention that a re-excision of the site with appropriate margins would be necessary. I was wondering what exactly this all means since I have yet to receive a phone call from my doctor explaining everything. Thank you everyone for your help and I hope that everyone is doing well!

Login or register to post replies.

Susan1985's picture
Replies 3
Last reply 9/5/2012 - 12:10pm

Hi all, my father was diagnosed with Melanoma two years ago this past August and died eight months later. I live in the Atlanta area and I am searching for a specialist for my own skin exams. I have not been to the Dermatologist at all since his death, and I need to find someone I can trust. I live in the northern suburbs of Atlanta but will travel anywhere within reason. Thank you for any and all advice.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 9/5/2012 - 6:36am
Replies by: Anonymous, dellriol, jmmm, john partrick michael murphy

How much increased risk for other future cancers do CT scans create due to radiation exposure?  Is it really true that one CT scan is like 500 x rays?

Login or register to post replies.

Ali's picture
Replies 11
Last reply 9/5/2012 - 1:58am

Just wanted to put out a quick update. 

In June, after completing 6 weeks of high dose IL-2 (with some amazing but mixed results), they found 25 brain mets and many others scattered around.  I could feel 12 underneath the skin.  One dose of IPI, developed colitis just 5 days into treatment, also felt the tumors shrinking that quickly.  I have not been able to do IPI again yet, just had a colonoscopy that still shows inflammation.  The tumors I can feel have continued to shrink and disappear, and can now feel only one little tiny one on my rib. 

Hoping this kind of response is happening in the brain!!!  I get the 12-week-after-IPI scans in one week.  Anxiety!  Thanks for all the triumphant stories I read today, they are going to get me through the week. 

Good luck to all!

p.s.  No symptoms of brain involvement.  Not so much as a headache.  I feel 100% and have started to run again.  This is good, yes?

 

Login or register to post replies.

Based on the data, senior vice president of Global Development and Medical Affairs at Bristol-Myers Squibb Brian Daniels noted that the drugmaker "plan[s] to initiate registrational studies for anti-PD-1 in non-small-cell lung cancer and renal cell carcinoma this year and late 2012, early 2013 for metastatic melanoma." Leerink Swann analysts suggested that PD-1 inhibitors such as BMS-936558, which Bristol-Myers Squibb is developing with Ono Pharmaceutical, "could be the most exciting clinical and commercial opportunity in oncology," partly because such drugs might be able to treat a variety of cancers. Other companies developing compounds that work by similar mechanisms include GlaxoSmithKline, Merck & Co., Roche and Teva.

http://www.firstwordplus.com/Fws.do?articleid=2A61789AB2FB4D9EBE51BD7CB230F954&src=corp_site

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

jfro's picture
Replies 1
Last reply 9/4/2012 - 11:33pm
Replies by: Janner

Okay, Janner, I just need you to talk to me down a minute.

I really tried not to "research" after what you told me. However, I failed. Do you know anything about Nevoid Melanoma? I read that it often can be misdiagnosed as an Intraderman Nevus. You seem quite knowledgeable and was wondering if you knew anything about this rare type? I am really trying to trust my path report until I see my doctor next week but only having a shave biopsy concerns me!

Thanks again!

Login or register to post replies.

wlibby2020's picture
Replies 1
Last reply 9/4/2012 - 10:57pm
Replies by: jag

Since my stage 4 diagnosis 2 years ago I've developed an allergy to contact with chlorhexidine and I believe it is somehow related to one of my treatment protocols and am hoping to see if others have experienced same.

Chlorhexidine is an antibacterial in products like Surgiprep and Hibiclens and even gym wipes as well as mouthwash at the dentist.  The allergic reaction ranges from severe contact dermatitis to anaphalactic shock.  It's a rare allergy but a severe one requiring epi-pens, medical tags, etc.

I've never had an allergy before I had treatment and the way chlorhexidine works seems to be somewhat related to melanoma treatment, but I cannot find solid evidence connecting the two.

I've had biochemo and TIL (t-cell therapy) at MD Anderson before I developed it and am currently in BRAF&MEK clinical trial at Moffit.

The first time I had a reaction was a cleaning kit for PICC line, second time was a surgery prep and last time was said gym wipes.

This may have nothing to do with melanoma treatments and be a one-off, but it is a pretty severe allergy so if anyone has also developed it we may be able to spread the word.

Login or register to post replies.

Anonymous's picture
Replies 12
Last reply 9/4/2012 - 8:50pm
Replies by: Harry in Fair Oaks, rbruce, Gene_S, LynnLuc, Anonymous

Hi All,

I am new to the board. I feel very lucky I found you all.

I am wondering what parts of the body are required to be scanned for clinical trials. Is it required for trials to scan from head to toe???

I am in  Merck PD1 clinical trial and have scans every 12 weeks.  These are the scans I am getting: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my left leg, lungs, and on chest. Recently, just became NED. 

I would appreciate you sharing what trial/and or sponsor of the trial and what scans are you required to have??

Thank so much for replying to my post.

God Bless you all.

Marybelle

Login or register to post replies.

Jin's picture
Replies 4
Last reply 9/4/2012 - 7:59pm
Replies by: Jin, BrianP, deardad

Hello to all you incredible folks.  I've been reading this blog since my husband, Chris, was diagnosed with Stage 4 Mel in Jan. 2011. You all have been an inspiration and huge support in our journey.  So, I thank you and thank you.

Chris's journey started with a visit to the emergency room followed by a craniotomy for a bleeding brain tumor.  This was the first we know he had cancer.  He was lucky enough to get on a GSK Braf Inhibitor trial at UCSF in April 2011.  Everything looked good for a year and then in April 2012, his scans showed progression in both the brain and the body.  He had Gamma Knife to treat the brain mets in May.  Also went on Zelboraf and Yervoy In May.  Brain MRI in July showed two (out of 14) of the mets treated with gamma had progressed and there were four tiny new mets in his brain.  We chose to have no steroids and no treatment of his brain as that would almost certainly require steroids too.  We crossed our fingers and hoped the Yervoy would work.  Chris is due to have another MRI of his brain this friday.  Based on the subcus we can feel, it doesn't appear to be working.  We've talked to everyone we can think of but can't any PD-1 or PDL-1 or Adoptive Cell Transfer that will allow him on if he has active brain mets. 

Does anyone know of anything?  His oncologist is recommending whole brain radiation followed by a gamma knife "boost" in the hope that that will give him 8 wks of brain stability.  Everything we've read or hear about whole brain would indicate that whole brain is going to have significant and permanent neurological side effects.  Chris is 61, in great health other than the melanoma, and we'd love to have some option other than whole brain radiation.

Any ideas would be much appreciated.

Login or register to post replies.

jfro's picture
Replies 15
Last reply 9/4/2012 - 6:30pm
Replies by: jfro, Janner, POW, LynnLuc

Hello!

I was hoping someone could help me decipher my pathology report. My diagnosis seems a bit rare and doesn't seem related to melanoma but I tend to get very nervous right away. I'd appreciate any help from any kind hearted soul out there.

Diagnosis: Melanocytic Nevus, intradermal type, with focal atypia

Clinical Data: Pearly Papulr R/O Squamous Cell Carcinoma

pecimen Site: Right elbow-shave biopsy

Gross Description: This specimen is a portion of skin measuring (mm) 4x3, 1pc.

Microscopic Description:
Present within the dermis are orderly nests, cords, and strands of melanocytic nevus cells. There is focial atypia present. There is melanin pigmentation present. HMB 45 shows some superficial staning, Ki-67 stains rare singe cells in the lesion. P-16 also shows some scattered positivity. If this is a smaller portion of a larger lesion or recurs, complete removal is recommended to ensure full histologic evaluation.

Okay-so I'm freaking out a bit! Could this come back melanoma once looked at again??

 

Thank you.

Login or register to post replies.

natasha's picture
Replies 13
Last reply 9/4/2012 - 2:46pm
Replies by: Anonymous, Harry in Fair Oaks, Phil S, natasha

Hi ! I am stage 1 Breslow 0.2 and exept WLE I was not offered to do Scans ,Xrays or even blood work.

I read a lot here on this forum and can see people with stage 1 have all this done.

Does it mean my Doctors don't do everything ehat should be done ???

Login or register to post replies.

Richard_K's picture
Replies 24
Last reply 9/4/2012 - 9:14am

 

Hi everyone,

I had scans this past Monday and yesterday met with my doctor for the results – NO CHANGE from previous scans.  It’s now been 28 months since I started on Zelboraf and 19 months since the PET scan stopped lighting up.

I get a through physical exam including blood work and EKGs (three of them).  My doctor and her staff consider me a “boring” patient.  It’s great to be boring!

I got another six week supply of pills with next scheduled scans for July 30th.

Dick

Login or register to post replies.

Anonymous's picture
Replies 7
Last reply 9/4/2012 - 12:43am
Replies by: Janner, chalknpens, Anonymous

Curious.  Shopping around for new derm.  Found one I like but she reads her own pathology, and sends out for stains if necessary.  Thought that was odd.  Is that ok?  She is a teaching Derm with research part of her practice that has med students - but not associated with any major hospital that  I know of?

Login or register to post replies.

Pages