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

I've noticed lots of mentions and dermatology/pathology referrals to Dr. Boris Bastian at UCSF. (I notice them because I'm seen there.) Saw this short writeup on him today (about 3/4 of the way down).  

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 9/13/2014 - 8:08am
Replies by: Anonymous

Hello,

My dad has just been diagnosed stage 5 we are stil waiting to hear what we do next. Whatever happens I always think you need a second opinion. We live in the UK - can anyone recommend any specialists?

 

thank you

Login or register to post replies.

scragfinch's picture
Replies 13
Last reply 9/12/2014 - 10:33pm
Replies by: Squash, scragfinch, Janner, Anonymous, Ed Williams

Hello everyone. I'm new and would like some advice. I live in the uk. I was diagnosed with melanoma on my knee at the beginning of September. When I received the diagnosis from my dermatologist I was in shock. He said he would do a wle. I didn't know what to ask and just wanted to get out of there. The dermatologist said it was thin and that 95 percent of people he sees are ok. I went home and did some research.

When I went back for the wle I found out breslow depth was 1.38 with mitotic rate 1. I asked about sentinel node biopsy and he said it would give no advantage and he felt nothing in my lymph nodes. I get the results of the wle in 3 weeks. Both my parents had cancer. My dad died of lung cancer which spread to his brain in 2012 so I have seen what a terrible disease it is. Back then I had to fight for his diagnosis (they wouldn't do a scan) and aggressive treatment. Do you think I should get a second opinion now and push for scans and blood tests? I want to do everything I can. I'm 34.

Login or register to post replies.

fucancer44's picture
Replies 2
Last reply 9/12/2014 - 5:12pm
Replies by: arthurjedi007, RJoeyB

We are looking for clinical trials to get my brother-in-law into for his Stage 4 Melanoma treatment. All of the trials we are finding say he has to have a "measurable lesion." He hs 3 lesions: one on his femur, one on his L2 vertebrae, and one on his 5th rib. They are all approximately 3/4 of an inch in size. So the main question here is: can bone mets actually be considered "measureable?" I have heard both yes and no. 

Login or register to post replies.

Julie in SoCal's picture
Replies 9
Last reply 9/12/2014 - 4:57pm

Hi Friends!

Do the happy dance with me!  I had scans this week and just wanted to post and say that I am still NED (or NERD- no evidence of recurring disease)!

Late last year had 5 rice grain to marble sized in transit mets pop up on my upper arm after 5 years of being NED. I had all 4 doses of Ipi with a predictable combination of side effects (headache, pituitary problems, flu like symptoms and arthritis like symptoms), but I watched each met melt away.  Ipi has been a homerun for me!

I know this isn't true for everyone here, but I wanted to post this as encouragement to others.  

Gratefully,

Julie

Stage 3c, WLE, SNB, LND, HD-INF, GM-CSF, IPI.

Login or register to post replies.

Resilient4Life's picture
Replies 5
Last reply 9/12/2014 - 2:53pm

 

Hello everyone,

This forum has been a sanity saver for me, and I thank you all for your input. My surgical consult is Friday and am illierate about the "justification" or rationale for sentinal node biopsies. I've looked at other sites and come away with an ambiguous result.

One 7mm area staged 1A by this forum, Clarks level II, shallow thickness 0.25mm. The location is near the shoulder area upper left arm, approximately 1-2 inches from a prior surgical scar (impingement) and 3-4 inches away from the apparent location of lymph node(s) in the underarm area.

Questions: what are the top determing factors for a SNL? Location and depth or something else? Would it be unrealistic or unwise to push for a needle biopsy? Should I be concerned at all? Thanks again.

 

 

 

Login or register to post replies.

Kenny's picture
Replies 5
Last reply 9/12/2014 - 12:48pm

We lost a great man to a yearlong battle with Melanoma on 9/2/14.  He was my father in-law.  I have loved and respected him for 38 years.  His Melanoma was found too late and was very aggressive, he fought the battle hard but it took him without notice.  He had brain tumors that were not yet detected; he was scheduled for a MRI on 8/29/14.  A blood vessel that was feeding one of the 2 tumors in his brain burst on 8/25/14 and he had a severe stroke.

I am so thankful for the time spent with him over the years and especially the past year walking through this terrible disease with him.  I found out on 3/25/14 that I have Stage 3a Melanoma, this drew us even closer as I could now personally relate to his fears and concerns.  

On 8/23/14 my mother in-law, father in-law, wife and I went out to dinner to celebrate our wedding anniversaries together; theirs was 57 years on 8/12/14 and ours was 35 years on 8/26/14.  I am so glad for the memories. 

Please pray for our family and for my wife, as she not only grieves for her daddy but also fears for me.

Thank you,

Ken     

Ken Sears

Stage 3a 

Login or register to post replies.

Replies by: arthurjedi007, kylez, RJoeyB

I was wondering if 2 days after my last radiation treatment is too soon for an MRI and PET/CT scans?

Basically my long distance doc on 8/13 did a PET/CT and wanted radiation done by 9/3 and wanted to do a brain MRI and another PET/CT on 9/24. But he wanted me to do radiation locally since I've had radiation there before. If the scans are ok then I can continue with the PD1. If the scan shows anything in the brain then I'm off the PD1.

So in reality locally they did a brain MRI on 8/21 in preperation for the radiation. They also did a lower spine MRI on 8/21 and I got confirmation from my long distance doc we needed to radiate 2 spots in my spine. Basically there is 1 tumor in my skull that has grown out to my scalp and inward towards my brain pressing on the dura. Nothing is in my brain at that scan though. The 2 in my spine I'm not sure how much soft tissue involvement there is but they want to prevent the occurance last winter where another spot in the spine almost paralyzed me so hit them now instead of later.

So finally I got my first zap to the spine today 9/9. Insurance was complaining because like the nurse said my local radiation doc wants to do it the more precise right way. They still haven't approved the head yet but they think they should be able to start it on 9/12. Basically I get 30 gray in 5 fractions to each spot of the spine and head. So basically each spot gets 6 gray per zap every other day. I say per zap but really it's several different zaps from various angles. I think I counted at least 6 zaps to the one spine spot today. So probably enough to get them to shrink I hope and hopefully the PD1 will then take care of them like it's shrinking over a dozen other tumors. They alternate which spot in the spine every other day. The head they will also do every other day but in combination with (or actually after) whatever spine spot for that day.

So I'm wondering whether I should just stay home and recover from the radiation and get the newly FDA approved PD1 from my local onc doc on 9/24 who I still see for my xgeva shot. Last time I saw him he said I needed to stay on the PD1 so it should be no problem as long as I give them enough of a heads up so they can take care of the insurance. Then after the radiation and some rest and recovery I can go to my long distance doc for these re-scans.

So not only am I concerned about not really being strong enough to travel the 500 miles to the long distance onc doc although I feel pretty good now. I'm wondering if scanning so soon after radiation should even be done. I remember reading one person's story who was on immunotherapy, did radiation and the doctor visibly saw the tumors shrank. So that person's doc did not want to scan yet because he saw an immune response and did not want to mess up that delicate little understood balance of the immune system if I remember that person's story right.

I'm very thankful to Joe so I was able to question my radiation doc so he changed his initial idea and is doing my head the better way. You folks are the best.

Any thoughts or suggestions are appreciated. I'm just not sure what to do.

Artie

 

Login or register to post replies.

Exhausted's picture
Replies 1
Last reply 9/11/2014 - 2:43pm
Replies by: CHD

Sorry this is alot less severe than the norm around here, but I had a mole that my dermatologist wasn't worried about but had him remove it anyway and it came back moderately atypical.

Of course this isn't the worst thing in the world, but I am looking for information on how much this increases my risk for melanoma and how worried I should be about some of my other moles that seem slightly off.  I don't want to be so aggressive that I look like swiss cheese, but I do want to make the best choices and nip any potential major problems in the bud.

Thanks!

Login or register to post replies.

Tim--MRF's picture
Replies 18
Last reply 9/11/2014 - 2:23pm

The FDA has approved Merck's PD1 drug, pembrolizumab, for use in patients with metastatic or unresectable melanoma.

The drug, which will be sold under the name Keytruda, was approved based on a trail of 173 patients. 24% had tumor shrinkage and most of those patients continued to respond after 8.5 months. This is by far the best response rate of any melanoma drug currently approved.

The drug is approved for patients who have already been treated with ipi and, for those whose tumor has the BRAF mutation, with a BRAF inhibitor.

Tim--MRF

 

Login or register to post replies.

kalisama's picture
Replies 9
Last reply 9/11/2014 - 12:28pm

Am I understanding correctly that this med is only available to patients who have previously been on Yurvoy?

Thank you for clarifying. I see my onc this Monday and I want to understand as much as I can before I see him.

best,
kali

Login or register to post replies.

dirks7171's picture
Replies 7
Last reply 9/11/2014 - 5:40am

I recently underwent WLE surgery for malignant mucosal melanoma of the anal canal.  I had a large tumor (3.8 cm) that had grown into the submucosal tissue by the time it was surgerically removed in the beginning of August.  I live in Maryland where my surgery was performed and am in the process of considering adjuvant therapy now -- and am at a crossroads.  My last PET scan in July showed no metastisas but I know this is an aggressive type of melanoma cancer that can spread quickly.  My biopsy surgery pathology clearly identified the cancer as malignant melanoma.

My surgery pathology slides are being examined at Memorial Sloan Kettering.  My  doctor there is Richard Carvajal - Director of Developmental Therapeutics.  When I met with he and his team in July before my surgery (after receiving a diagnosis of malignant melanoma of the anus) and prior to examination of the slides (now underway) he suggested I might be a candidate for a chemotherapy combination therapy consisting of two drugs that have been around for a while - cisplatin (given interveniously) and temador (temazolomide) - given in pill form.  The IV and pills are given for a week - followed by a three week lapse.  This process is repeated six times.  The therapy is based on a clinical study done in China of individuals diagnosed with muscosal melanoma.  The outcome of the study suggested that the therapy prolonged the lives, on average, of the individuals who were given the chemo combo. 

Just wondering if anyone in the network has undergone the chemo combo at Sloan or any other medical facility -- or has any insights into how effective it might be?  Also wondering about experiences working with the mucosal melanoma team at Sloan.  Any suggestions on how to maximize patient-doctor communications and treatment outcomes. 

Finally, I don't know if I am C-Kit or BRAF mutation positive yet -- or much about the overall pathology biology.  Does anyone have suggestions on what type of immunotherapy might be available to me given specific mutations or other aspects of the malignant mucosal melanoma (anal) that I was diagnosed with (e.g. Gleevec)?

As you can tell I'm a newbie at this and will try and give as good as I get from anyone who can shed any light on my questions.  Thanks in advance for any information and interest.  I am frightened but hopeful.

Chesapeake Guy!

 

 

 

 

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 9/11/2014 - 12:39am
Replies by: kylez, Anonymous

Hi can anyone tell me what treatment they Are on for their brain mets? Already been told that vem and wbr have failed. Also srs wont work cos location of mets. Therefore do I have any other options to use? Heard it will take to Long for ipi to work

Login or register to post replies.

Bubbles's picture
Replies 23
Last reply 9/11/2014 - 12:26am

To all of you:

CT's of chest, neck, abdomen and pelvis along with an MRI of the brain were all negative today.

133 months post original melanoma diagnosis in 2003.  53 months Stage IV.  47 months NED.  45 months since start of my Nivolumab (BMS' anti-PD1)  trial in Tampa.  15 months since my last infusion.

I feel incredibly lucky and amazed  and grateful and strange and undeserving...to be here...and to be able to share this news with all of you.  I do so to wish you hope and strength in all your journeys and struggles.

Yours, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Login or register to post replies.

Debra Cannon's picture
Replies 2
Last reply 9/10/2014 - 10:09pm
Replies by: BrianP, Bubbles

Anyone with Stage II b getting immunotherapies or other types of adjuvant therapeis after tumor removal and sentinel lymph node biopsy?

Login or register to post replies.

Pages