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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arthurjedi007's picture
Replies 14
Last reply 5/27/2015 - 9:50am

Just thought someone would like to know what I've learned about phase 1 trials. Basically they are very hard to get into. If I understand right from the several places I've talked to they seem to work the same. Basically they start with usually 3 open slots. If this trial is shared among multiple sites then the slots are shared too. When the last of those slots are filled the clock starts. In about 8 weeks they examine those folks and determine if the trial can continue and what they need to do like raise the dose or whatever. Then 3 more slots open and the process repeats. Sooo very narrow window of getting an open slot. A huge amount of time waiting. Lots of people wanting too few slots. Then we have to deal with some of the results reported might not be that stellar. Like the mga271 med had pretty much no response so they are testing now for the b7-h3 and hoping it will work.

Fortunately I've heard twice this week from NIH in Bethesda so I'm hoping that continues good and it will happen. It sounds like it will. The last numbers I saw had a 50% response rate and 12% cure. Which is incredible but who knows. But I've been on the wrong side of the 85% braf stuff sooo I'm hoping and praying if it happens this will work for me. Fortunately I'm still feeling ok and walking ok. I'm looking forward to it despite what some folks think about it. Dunno yet if it will happen but I'm hopeful. They did say the last step will be il-2 so I would rather do it this way than by itself.

Anyway enough rambling. Just thought I would share about the phase 1 stuff.

Artie

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/20/2015 - 5:05pm
Replies by: Anonymous, Janner

Hi I recently had a "severely atypical" mole excised from my neck.  I read a paper that says these sometimes are diagnosed as actually melanoma after the full excision is biopsied.  This thing has been on my neck for at least 1.5 years, and I'm kind of freaked out that it is actually melanoma.  Can I generally rely on the original pathology report that called this "severely atyipcal?"  How generally common is it for these severely atyipcal moles to actually be misdiagnosed melanomas?

Thanks,

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Lauren mom to Jenna's picture
Replies 1
Last reply 5/26/2015 - 10:08am
Replies by: Becky

I haven't been on the MPIP Bulletin Board in years, but I am still active with the MRF Gala in the San Francisco Bay Area.  The MPIP was such and amazing support to me when I was desperate for advice and support.  Being able to connect with other melanoma patients was critical to extending the life of my daughter Jenna, and keeping my head above water.  I will be eternally grateful for this resource.  The Gala gives patients/families/MRF an opportunity to meet in person.  If you live in Northern California (or want to visit San Francisco) come to the event!  We are your community, and we want to meet you.   

 

http://www.melanoma.org/get-involved/calendar-of-events/wings-hope-melan...

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Erinmay22's picture
Replies 5
Last reply 5/21/2015 - 10:14pm
Replies by: BrianP, Bubbles, vivian, Anonymous

 

Ok guys - a little bit of a long post!  I have been MIA a lot lately!  Busy work/travel schedule!  But an update!  I had my scans last week.  I have been on the Merck Keytruda trial since Jan 2013.   Prior to that I did 4 months of Zelboraf and 4 doses of Yervoy!
 
My scans continue to show nothing new or growing!  So it was decided that last week was my last Keytruda dose! (I think that made #41?)   While they can't prove I had a total complete response (I have some unchanged slightly swollen lymph nodes that they think have dead disease but are too hard to biopsy and too small to check with a PET scan.  
 
Those that know me, know I LOVE to take pictures!  I was testing out a new app and put this collage together to show how thru it all, I haven't let melanoma define me or slow me down!  Just wanted to share as a little hope and encouragement!  (Sorry for the long post...)
 

 

** what I shared on Instagram (https://instagram.com/p/242S8yxhKX/) - I always forget I downloaded the Instagram layout app!  A summary of the almost 5 year journey with melanoma!  And how it hasn't really stopped me!  Upper left hand picture is me in Australia in September 2010.  That was when the mole on my back started to grow like crazy!  It was there one night in the outback near Uluru that it started to bleed!  I had it removed immediately after returning to the states!  Other pictures are a sampling of trips since then with trips to Thailand (twice), Scotland/London for summer 2012 Olympics! Yosemite, Russia (winter 2014 Olympics) GrandCanyon Mexico!  
 
Cheers,
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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Anonymous's picture
Anonymous
Replies 0

Hi, I'm a 32 year old woman with Stage 4 melanoma, based in the UK. I'm about to start on Ipilimumab, following a surgey to remove a met where the surgeons didn't manage to get clear margins.

I just wanted to do a quick survey to see if anyone knew of any female patients still able to become pregnant after their Ipi treatment.

 

There doesn't seem to be any official info, and  I'm trying to weigh up the likelihood of having any future fertility problems. My oncologist is generally great, but he's a bit unhelpful on this point, saying that if I were male then he'd recommend freezing sperm as it's easy and relatively cheap, but that for me it will be expensive, delay my treatment and is more likely to be unsuccessful anyway as the whole process has more problems. The lack of clear data also means that, in the UK, any pre-emptive egg-harvesting/freezing isn't funded. I understand that by pushing for it I would potentially put my health at risk but at the same time I'm nervous about making a decision now that I will regret later - I guess we're all just trying to make the best decision at the time, and hopefully a bit of extra info from you guys will help in that.

Thanks is advance for any help, info and advice you can offer!

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Just watched this and learned a lot!  Surgical Oncologist Jeff Gershenwald provides this excellent webinar on all aspects of surgery and melanoma from early to advanced stage. He does a great job with diagrams and photos explaining Sentinel Node Biopsy and also the new intralesional therapies. You can view it here:http://melanomainternational.org/webina ... 015-primer

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I have some questions about basic properties of cancer/melanoma that I can't find the answer to.

How is advanced melanoma sub-staged? I understand that the sub-stages are M1a (skin and lymph node metastases), M1b (lung) and M1c (any other organs, including liver and lung). But what about metastases in the bowels? Is that M1c? Does it make a difference for the prognosis if the tumors are in the liver or in the brain?

Why is the tumor burden important? What happens to the body if you have a high tumor burden? I have seen the word cachexia, but how ill do you have to be before that occurs?

Thank you!

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Concerned_Australia's picture
Replies 4
Last reply 5/19/2015 - 10:56pm

Hi,

My Father-in-law was diagnosed with advanced melanoma in late 2014. I'm sorry, I don't have specific details about much of his diagnosis, prognosis and treatment as the information is filtered down to me from my wife (which comes from my mother-in-law). It has been difficult for me to obtain specific clinical information.

My Father in law had a primary, malignant tumour removed from his thigh in late 2014, and lympth nodes were also removed. A PET scan revealed multiple MET's (liver, spine, lungs), and he commenced immunotherapy (I wasn't given additional details). I believe this fits the criteria for a stage 4 diagnosis?

A recent MRI scan (last week) highlighted that the MET's were not responding to the treatment and it was ceased. The MET on his spine had reportedly increased in size and coincided with an increase in intense hip pain symptoms. I was informed that they were going to commence chemotherapy.

They just received the results of a second brain MRI today, which confirmed the presence of a brain MET (I was given no additional information regarding its size or if there was just one or multiple tumours. I was told that all other treatment (chemo) is to be cancelled and he will have 5-6 shots of radiotherapy to treat the brain tumour. I was also informed that apparently the radiotherapy will not commence for approximately 5-6 weeks and that according to the doctor, the waiting time is not an issue.

I am just wondering if it is normal to delay the commencement of a specific treatment for a brain MET for 5-6 weeks? My instincts (and my concerns re: the poor prognosis associated with melanoma brain MET's) are screeming "this is wrong!! He should be commencing the treatment right now".

I don't know if I am ignorant or just overly critical of his Oncologist and other treatment providers but it seems like there has been a delay in the commencement of each stage of treatment, or imaging investigation (in the order of weeks), and they (in my opinion), seem quite relaxed about the whole affair.

Should I be concerned about these delays (especially the brain MET treatment delay of 5-6 weeks)?

Thanks in advance for any guidance and advice.

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AnitaLoree's picture
Replies 5
Last reply 5/26/2015 - 4:05am
Replies by: Squash, Bubbles

http://melanomanewstoday.com/2015/05/15/provectus-synthesis-patent-grant...

This link describes the intralesional use of PV-10 (active agent: rose bengal) for melanoma treatment with complete response for a % of the patients. A.L.

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raeds's picture
Replies 3
Last reply 5/19/2015 - 11:05pm
Replies by: Janner, raeds

Hi all -

I know I am very fortunate to not have a melanoma diagnosis, but I do have many atypical moles and have had 3 AMH (Atypical Melanocytic Hyperplasia) removed. I have read on line that some docs don't like to call a a melanoma in situ, so they say AMH instead. I DID speak to the pathologist (pretty reknowned - at Scripps in San Diego) and he said I did not have melanoma in-situ. 

 

Here is my concern: the derm who removed the first 2 AMHs 7 years ago only took 3 mm margins on one, and 4mm margins on the other. I am freaked that the margins weren't large enough. The pathologist had recommended 3-5 mm, and if I had been aware, I would have insisted on 5 mm. Fast forward 7 years, I have a 5 year old and a 21 month old and have just had another possibly atypical mole removed, and I am now obessessing about the old AMHs.

 

What is the liklihood of recurrence? Does recurrence happen at the site? After 7.5 years, am I in the clear on these? 

 

Please help. My anxiety is peaking. 

 

Thank you.

Rae

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Adam-MRF's picture
Replies 1
Last reply 5/20/2015 - 10:41am
Replies by: Adam-MRF
We invite you to join the MRF on Tuesday, May 19, 2015 at 4:00 pm ET for a Twitter chat about immunotherapy for treating advanced melanoma. We are partnering with the Cancer Research Institute (CRI) and its patient portal, The Answer to Cancer, to answer questions about immunotherapy. The MRF and CRI are proud to welcome Dr. Omid Hamid of the Angeles Clinic to share his melanoma and immunotherapy expertise. Salon.com writer and advanced melanoma survivor Mary Beth Williams will serve as the moderator.
 
Find the MRF on Twitter at @CureMelanoma, Cancer Research Institute at @CancerResearch, Dr. Hamid at @OmidHamidMD, and Mary Beth at @embeedub. On May 19th, follow the hashtag #ImmunoChat and use it in your comments to participate on Twitter. If you don't have a Twitter account, you can still follow the conversation live and after the fact by searching #ImmunoChat at twitter.com/search. We hope you'll join us for an informative conversation.
 
-Adam, MRF

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Anonymous's picture
Anonymous
Replies 11
Last reply 5/22/2015 - 5:46pm
Replies by: 273c, raeds, Bubbles, Linny, ecc26, Patina

So the short story is, hubby found a lump in his armpit which turned out to be melanoma.  So far he has had a PET/CT scan, seen dermatology and talked to a few different surgeons.  

The only tumors are the lymph node (lump) and a small (less than a cm) one by (not in) his liver.  I should also add he itches terribly and recently started getting patches of vitiligo.  So it seems his body is mounting an immune response on its own. 

Next week he is scheduled for opthomology (still looking for the primary site) and an MRI.  We will also likely end up at medical oncology.   The docs, mostly surgeons so far have all talked about removing the tumors and then maybe some "immunotherapy" or radiation after the surgery. 

I am trying to get up to speed on the various treatment options.  I've done the various internet searches and one doc did mention Yervoy.  It looks like Keytruda is better and has fewer side effects, any thought?

Are there treatments I should ask about?  Some that I should be wary of? 

 

Thanks

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Anonymous's picture
Replies 3
Last reply 5/18/2015 - 6:54pm
Replies by: Ed Williams, Bubbles, Anonymous

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Bubbles's picture
Replies 1
Last reply 5/17/2015 - 8:55am
Replies by: JoshF

This is not something I am pushing at all, but did come across the info and thought it might be worth investigating in patients who have already had several therapies and are still seeking an effective treatment.  I am not sure if patients who have been treated with anti-PD1 will be accepted, though patients are required to have had treatment with IL2, ipi, vemurafenib (if BRAF+) OR dacarbazine.  So...here's the links to the article, clinicaltrial.gov info, and my write up (as best as I can tell, anyway!!!):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/new-immunotherapy-trial-with-nbs20-for.html

Wishing you all my best.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Hello all. What a wonderful community this is. I wish I hadn't waited so long to register. I've only read a few threads, and I already feel encouraged by the stories of survival here. My melanoma story starts less than 3 weeks ago, but it's been such a long 2.5 weeks that it feels more like months.

I'm a 31-year-old male, and I was diagnosed with melanoma on my left calf on April 29th. My tumor was 1.6 mm thick, no ulceration, a mitotic rate of 1, and a Clark level of IV. My doc said I only had a 15% chance of spread to my sentinel lymph nodes. My wide local excision and sentinel lymph node biopsy was 3 days ago. Unfortunately, luck wasn't on my side, and my sentinel lymph node (inguinal) was positive for cancer. She only removed one node. Two lit up on the lymph node study, but the second was at a deeper lymph node basin.

In my node, it's only microscopic disease (she said about 0.5 mm), and there is no extracapsular extension. She thinks it's highly unlikely that it has spread to any of my other regional lymph nodes. However, and she warned me this was controversial, the standard of care will still be to do a complete dissection of my groin lymph nodes. Afterward, I'll probably be able to link up with a clinical trial (it's a research hospital) to boost my immune response against the cancer.

I'm a scientist myself, so I have been reading clinical studies, and I see how lymph node dissection doesn't improve survival at all. What have your experiences been? I'm wondering if I should try to skip the node dissection and go straight to the clinical trials. I am all about aggressive treatment, but it seems like the lymph node dissection has few positive benefits in my case (since I have no extracapsular extenstion) while greatly increasing the risk of surgical complications.

I know the standard of care is limited until research identifies a better solution, but does anyone know if the standard of care is changing at some places around the country?

Thanks and God bless!

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