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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adriana cooper's picture
Replies 5
Last reply 9/29/2016 - 7:07am

Adriana has surgery in the AM to place her ommaya and is scheduled to start Depocyt on Friday then every 2 weeks. She has not been scheduled for a flow test. I have been doing quite a bit of research and read that it is an important step and most every post I read from folks undergoing IT therapy have mentioned this step. Should I be concerned that it has not been scheduled. I understand the entire process takes 24hrs. As far as I can tell her Neuro-oncologist is quite experienced in IT therapy and has run trials using it (sadly none for melanoma) https://clinicaltrials.gov/ct2/show/NCT00992602. I would be devastated if something bad were to happen because a step got missed. I think the Dr.s get tired of my asking questions and researching but as with us all, our loved ones come first.

We are trying to stay optimistic about the Depocyt working for melanoma given it is her only current option, although any instance of melanoma patients using IT chemo therapies have passed within a few months. We will continue to investigate IT IL-2 options. Adding TIL would not me an option as no tumor has been preserved for such and there are none currently available as the BRAF worked on them? but sadly allowed the brain tumor to occur. 

Thanks for any advice. 

Would love to hear from any one with first hand experience with leptomentingeal disease (good or bad.)

Hoping for the best but very worried, Rob

Adriana

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dawn dion's picture
Replies 3
Last reply 9/29/2016 - 5:38am
Replies by: dawn dion, Bubbles, debwray

Hello all. It's been quite some time since I have been on here. I have been taking Keytruda for 16 months and while it's obviously helping it has not getting rid of the "spot" that I have been battleing for almost 6 yrs. I have immense ongoing pain in my shoulder for a solud 9 months. Pain meds really don't touch it. After many conversations I am meeting with radiation oncologist to discuss the possibility of going at it from that direction. I am stable and I forget the term they used but Drs. feel comfortable with me coming off the drug and watching. I don't know how comfortable I am without sone sort if "defense". Anyone have any thoughts on this.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Laura-lou's picture
Replies 9
Last reply 9/29/2016 - 4:53am

Hi all,

I had a biopsy on Monday, and by today, I have decided if I haven't heard anything, it's nothing.

My mole was 7mm with two colours - black and brown - and what looked like a mole, within a mole, within a mole.

Presented total A-E, but I've been using reading some moles do present like melanoma, and they're not.

A good chunk was taken, 9 stitches, or so.

What I'm interested in knowing, is how long did it take for you to be told it was melanoma. I'm thinking if I don't hear, defo by tomorrow, it's fine.

Thank you :)

Laura-lou

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(Always loved that line from 'Love Actually'!) I know you said you were taking a break from the forum for a bit and that is okay! But wanted you to know...should you take a peek...we are all still rooting for you! Love, c

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Julie in SoCal's picture
Replies 4
Last reply 9/29/2016 - 3:43am

Greetings Friends,

im not sure why, but this post has been rejected 2 times now. Maybe the third time's a charm.

It's been a wild roller coaster of a ride the last few weeks.  I thought that the treatment ride was leveling out (though probably not coming to a full and complete stop).  I thought I was joining a clinical trial. Alas it's not to be.  So here kicking Mel as I know it-
 
I will not be joining either of the trials I had hoped and thought I qualified fo. My liver numbers are too high and so I don't qualify.  So the plan is to get to get my liver back in shape where it should be and then move on with Mel.
 
My Rock Star Doc and I also talked about having the lung tumor resected and being done with it for now.  But again, there's no hurry on the lung critter and I still have options, just not clinical trial options at this time.
 
So that's all the news.  Of course, like a good coaster with hidden ups and downs, the plan is liable to change -seemingly at any moment (usually after I just catch my breath).  I'll be keeping my hands and arms inside the car at all times, but full and complete stop is a long ways off.
 
Here's to the process!  Thanks for riding with me,
 
shalom,
 
Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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snow white's picture
Replies 5
Last reply 9/29/2016 - 12:29am

Just wanted to update, after much discussion by 3 different docs. they have all agreed to the Gamma Knife!  My Dad is crying tears of relief that with so many diffrent opnions all have decided that this is a go.  Supposed to happen next week!  I am so glad I pushed Mom to ask about it!  Its going to happen at Hoag in Newport Beach.

:)

Jennifer

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Marilynliz's picture
Replies 2
Last reply 9/28/2016 - 10:53pm
Replies by: Mom2Addy, jennunicorn

I am just starting my journey. I am looking at either Wake Forest of UNC. I would also appreciate any oncologist recommendations. I actually live closer to the Hickory/ Mooresville/Statesville area but would be willing to drive the distance for comprehensive care. Any recommendations would be appreciated. Thanks.

 

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Can you have radiation therapy if a melanoma brain mets has started to bleed (causing an intracranial haemorrhagic stroke)?  Or should we wait until the scans show that the bleeding as slowed or stopped prior to starting radiation?  Just curious if the radiation would cause more bleeding and therefore swelling.

Thank you.

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stevecathy's picture
Replies 8
Last reply 9/28/2016 - 10:00pm

Short of story , my husband has been on mekinist and taflinar since Jan 16. Ct scan 5 weeks ago looked great , yesterday began feeling heaviness in left leg and arm . Primary Dr sent to er , he began to have seizures while at er . Mri done and confirmed brain lessions . There are 4 that were measured 1 to 2.5 cm . We are heartbroken, I have ask local oncologist if he can start keytruda. Advice , comments , anyone dealing with this issue , success, experience would all be appreciated. Please any suggestions. Thank you

Cathy Jewell

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knittingirl's picture
Replies 1
Last reply 9/28/2016 - 9:49pm
Replies by: maryb-z

I was NED since August after follwowing a ipi/nivo treatment at the end of the year 2015. But last week I felt a bump in y left forearm. I had a biopsy done. The pathologist thinks it is a schwannoma ( benign tumor of nerve) but my dermatologist wants to review the specimen with other doctors as it could be a recurrence of melanoma. I have to wait ....

Anyone has gone through this kind of experience ?

Thanks,

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Julie in SoCal's picture
Replies 1
Last reply 9/28/2016 - 9:37pm
Replies by: debwray

I tried to post, but it said I was blocked. So am I blocked?

julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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