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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yazziemac's picture
Replies 2
Last reply 4/5/2015 - 3:21pm
Replies by: _Paul_, Ed Williams

Hello all:

 

It's been a tough 2 weeks. Pete had one week of radiation to his back for pain.  The day after it finished he was overwhelmed with headache and vomiting.  He was admitted to our local hospital and given an MRI.  They had difficulty managing his pain and he was in hospital for 4 days.  The MRI showed many new brain lesions.  He is now home and begins whole brain radiation next week.  He continues on the Ipi and has now had 2 infusions.  His pain is now managed well.  Happy Easter to you too.

 

Yasmin

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Nadia's picture
Replies 5
Last reply 4/5/2015 - 3:15pm

We live in Canada, hubs failed ipi, had to interrupt Dabrafenib due to side effects, and after 12 shots of Keytruda the scans are showing growth in one of his existing lung nodules and new growth in the gastro hepatic ligament lymph nodes. He had a brain tumour, cyber-knifed in sept 2014, and as of last MRI (march 2015) has shrunk from 1.9mm to 1.4mm.

Other than the chemo cocktails, or going back to Dabrafenib and find a way to deal with the severe side effects, what other options do we have?

Are the TILs trials at NHI in Bethesda still open for international patients? What is the best way to approach them? Can we, as patients approach them or do we need a dr referral? 

I'm at a point where I need help, all the searches I do come up without anything else but IL2 and/or TILs; he appears to be excluded from any other type of trial due to prior exposure to ipi, antiPD1 and BRaf meds. Also, not sure about the vaccine type treatments, they all seem to require less than 3 visceral tumours, he has more than 12.  

Thank you for your input, I hope we can come up with something to keep us in the game a little longer.
 
 
 
 
 

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CCCL's picture
Replies 2
Last reply 4/3/2015 - 12:38pm
Replies by: CCCL, Thandster

Hi ,

 

I recently had my Sentinel Lymph Node surgery, and it they found 1 out of 5 nodes positive with 1 mm dimension of tumor burden in the positive node. I am going to be doing the CLND in a week or so. I have read a lot of the information on this forum and the internet as a whole and its been great to get a better understanding of everything. The question I wanted to see if anyone was familiar with was the pathologist listed a % of how much cancer I guess was in the Lymph Node. I haven't read about that anywhere, so I wanted to understand the significance of it. 

 

Here is exactly what the pathologist said on the report:

 

Largest Metastatic focus measures 1 mm in greatest dimension, involves less then 10% of lymph node area,  subcapsular and intraparenchymal location, no extracapsular extention indentified.

 

So I have a good idea of all of the other info outside of the "10%" of lymph node involvement, I haven't seen anything like that anywhere on the internet so was hoping someone here might be familiar it. I am just wondering if it has any significance in terms or good or bad factors. 

 

Thank you for your help ahead of time. 

CC

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Happy_girl's picture
Replies 3
Last reply 4/3/2015 - 9:49am
Replies by: Jubes, SoCalDave, Rocco

Yesterday was my one year anniversary... And today was my dr Appointment.... Everything was good! 1 year NED!  I can't believe it's been a year already! Thankful and blessed! Happy Easter everyone! 

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Joe.Pro's picture
Replies 10
Last reply 4/6/2015 - 2:09pm

So...today my life changed.  My biopsy came back positive for malignant melanoma and I'm undoubtedly quite scared based on a few factors.

Here are my details:

34 year old white male diagnosed today with AML.  4.26mm Breslow and IV Clark scale according to the pathology report I received from my podiatrist as the lesion is located on the bottom of my foot.  I know this lesion has been present for 18 months but I foolishly ignored it.  

I am preparing for my visit next week to Dana Farber Institute in Boston and am curious what questions I should be asking...are there better places to look for treatment based on results?

I'm obviously brand new to this disease and it's very scary as I'm sure all of you know.  

Please help...

joe

 

 

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Hi all,

We're in the early stages of planning a Twitter chat about immunotherapy and its use in treating melanoma. We will be partnering with another cancer research/advocacy group and an oncologist who specializes in immunotherapy. What questions can we answer? What do you think would be the most helpful information for people with melanoma to know about immunotherapy? We value your input so please let us know! You can leave suggestions in the comments or email me at LSmithDyer@melanoma.org. THANK YOU!

Lauren - MRF

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Chantel's picture
Replies 2
Last reply 4/7/2015 - 11:43pm
Replies by: arthurjedi007, Anonymous

My father was just diagnosed with recal spindle cell melanoma stage 2. He is undergoing surgery in one week - colectomy and removal of rectum with a stoma and bag placement (colostomy). From what I have read even with Surgey this is a bad tumor.

Are there any other treatments he should be seeking after surgery- chemo, radiation, immunotherapy or gene therapy available? Any advice on this tumor, treatment and prognosis is appreciated

thank you. 

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Ginger8888's picture
Replies 7
Last reply 4/3/2015 - 8:30am

I was diagnosed in Jan 2014 and had lymph nodes removed from the left side of my neck, then did the 30 Hd interferon in April-March and failed it, it spread to my lungs so Dr put me on Yervoy and i finished it Aug 13th and i just got my second 3 month ct scans results and i'm and still NED..Whoot! I can't believe i've been NED for 6 months..Thank you Yervoy!!

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Melissag0624's picture
Replies 5
Last reply 4/14/2015 - 1:51pm

In the news this morning my personal doctor, Robert Andtbacka, who's is a leading melanoma specialist at the Huntsman cancer institute announced that they are one step closer to finding a cure by injecting lesions known to have melanoma with a mutilated form of the cold and herpes virus. The point of this injection is to activate the body's immune system to fight the melanoma and also to teach your body that the melanoma cells are bad and require fighting. They are still very early in the trails but patients who have had very advanced melanoma are having great results and even being deemed cancer free! They are still doing clinical trials, I don't know the specifics and what candidates they are looking for but your questions can be answered by calling his office at 1-801-585-0303. Keep on fighting!

Love, Melissa stage 3b, biochemo in 2013, year 3, primary left upper shoulder with lymph node involvement.

<3 Melissa

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BillyF's picture
Replies 4
Last reply 4/3/2015 - 8:28am

Hello all.

 

I was diagnosed with Stage II Malignant Melanoma, Nodular type Breslow 5mm, Clark IV. I went through a one-year treatment with Intron A.  I was treated with interferons to delay the recurrence of malignant melanoma. My treatment consisted of a one-month high dose of 30 MIU five days a week, and 18 MIU three days a week for another 11 months. Like many others on interferon, I did suffer from side effects like headache, nausea, fatigue, mild depression, hair thinning, muscle ache , fever, and chills.

 

During that time I was terrified and I feel that, without support of my loved ones, i would become depressed.

What was your experience? How did you cope with your fears? I mean, did you stay positive throughout your treatment and how did you achieve that?

 

Billy

 

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LauraJean's picture
Replies 6
Last reply 4/1/2015 - 11:14pm

Hi I was just wondering how many ladies here have been diagnosed with breast cancer after melanoma. Doing radiation now for stage 1 breast cancer. First melanoma was in 2007 stage 2, then another in situ in 2013, now breast cancer. Is this common? Thanks

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Eileensulliv's picture
Replies 5
Last reply 4/4/2015 - 10:50pm

I had my first ipi plus Nivo treatment about a month ago (my first ever any sort of treatment) and ended up with high fevers and vomiting, among other minor side effects. At first it was believed to be because my thyroid function was way off, hyperthyroidism. But after some time in the hospital and my thyroid improving but my fevers and vomiting getting higher and more frequent, my doctors were stumped. While in the hospital they started me on prednisone and I got better. I've been home a few days, and feel great aside from a lil diarrhea. 

Today I saw my oncologist to discuss how I feel now and where we go from here. He does not want to give me both ipi and Nivo since I had such a reaction to both, so he is going to keep me on Nivo every other week. This will start in 2-3 weeks once I am weened to a low enough dose of prednisone. 

While in the hospital, they did another ct scan. The tumors in my lungs are stable, no growth. There was previously an area in my intestine in which they were unsure if it was pooling of contrast, bowel "filling", or another met. Today that spot is gone off the ct completely! And the best news is there was a 2.4x2.0cm nodule in my intestine which is now 1.7x1.4cm!! So it's shrinking!! I know it's a little early to be so excited, but I just can't help it! the little bugger is shrinking!!

Eileen 

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catrob2015's picture
Replies 3
Last reply 4/7/2015 - 6:41pm
Replies by: JulieW, Janner, Anonymous

Hi all,

Just looking for abit of advice/reassurance as my husband is about 1.5 years from his diagnosis of stage 1b  of superficial spreading melanoma, it was 1.33 breslow deep. p2ta 

I have obviousley been worried throughout but for some reason i am just so worked up and obsessing about it at the moment, scared beyond belief that it will come back for my husband. My husband is very very moley with big moles and seems to be new ones appearing all the time, little ones, just feel really scared that i am going to miss something or his dr will miss something. We are in the UK so i worry the treatment isn't as thorough as it might be in the U.S and again that it will be missed, particurley when there are so many moles to look at. 

I am finding myself constantly searching/reading re stage 1b melanoma and making me incredibly anxious and depressed. We have a young 3 year old autistic son and i am 5 months pregnant and scared gonna lose my husband and what will i do and that it is a ticking time bomb :'( 

How likely is it to come back?? Is it more likely to show in skin or lymph nodes? And any other stage 1bers that have gone on to be ok, i worry as he has so many moles it is inevitable it will come back :(?

Sorry for the long post and rant. Just really to talk to people who understand, i know there are people a lot worse off and very grateful for where we are now but still can't stop myself from worrying about it.

 

Thank you 

 

Catherine

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barrykatz's picture
Replies 13
Last reply 4/6/2015 - 10:50am

My father has had his first cylcle of Yervoy. the only side effect so far is very bad itching. to the point where they rash is starting to bleed because of the scratching. Our Dr. said we are not allowed to use any cream on the skin whatsoever. We are only allowed to use Benadryl or Claritin,

 

This really does not make any sense to me. Has anybody used any cream to combat the itchy side effects ipilimumab / yervoy. Please let me know. I really would like to be able to help him with this ASAP. Thanks

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rick1981's picture
Replies 2
Last reply 3/30/2015 - 9:35pm
Replies by: Bubbles, Ed Williams

Hi all,

My wife is taking Dabra/Trametinib (re-challenge after they worked for 5 months up to december) - now in combination with Keytruda. So far it seems the targeted therapy worked for the "new" brain mets (see earlier posts) but the immunotherapy itself doesn't seem to do much (5 infusions so far). 

On Wednesday we'll get a new PET/CT scan and possibly move to Yervoy if the Keytruda didn't do enough.

But I'm writing now because more has been published about immunotherapy plus targeted therapy.

http://melanomanewstoday.com/2015/03/25/ucla-researchers-develop-effecti... (Dr Ribas)

Kind regards,

Rick

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