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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Steve2142's picture
Replies 3
Last reply 11/7/2014 - 1:24am

Hello - 

My doctor ordered a brain MRI after the petscan showed widespread metastases in the skin and organs.  The MRI confirmed several mets in the brain.  Any explanation on what all below means would be very helpful:

-9mm rim enhancing mass with moderate edema

-6mm

-3mm

-3mm

-7.4mm

-Several additional foci of flair hyperintensity

-Multifocal osseous metastatic deposits involving the skull base

 

Thank you!

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Ashley's picture
Replies 9
Last reply 11/6/2014 - 11:44am

Hi Everyone,

 

I know I'm getting ahead of myself, and and should live for the moment with happy thoughts, but my dad who is stage 4 just had some incredible scans on a nivolumab/lirilumab trial.  They are only the first set of scans, but his LDH levels are continuing to decrease and are almost in the normal range, which makes me really think that his scans are going to continue to look great.

 

My question is around experience with longevity of PD-1 therapies.  Do they continue to work?  I realize that this is a combo trial, but assuming its the PD-1 that's helping him out, should we expect things to stay good?  He even had a small tumor in his brain shrink, which leads me to believe that at least one of the drugs cross the blood/brain barrier.  

 

Just looking for other people's experience.  I know BRAF drugs tend to be short lived, and then melanoma comes back aggressively...wondering if we should expect the same with PD-1.

 

Thanks,

Ashley

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MattF's picture
Replies 2
Last reply 11/6/2014 - 7:30am
Replies by: tcell's wife, kylez

Mixed results....

 

some tumors shrank......one ot bigger with swelling and an associated hematoba in my right frontal lobe.

meeting nuerourgeon on Fri.....

think the swelling and bleeding bother doc worse than the actual still relatively small lesion.

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JC's picture
Replies 25
Last reply 11/5/2014 - 11:54pm
I had a routine Dr appointment yesterday, did bloodwork, palpated my lymph nodes, etc. . I decided to go ahead and get a chest x-ray done, since I never did from a year ago since my 1A diagnosis (figured get a baseline in case would be useful in the future), even though Dr said isn't necessary with an early thin lesion like mine, no symptoms, etc.. He called back today and said there are a few spots of concern in the left lung, and he wants me back today for a chest CT with contrast. I'm in shock. I'm shaking. All this time I've been hearing 95+% survival rate for 1A lesions like mine, 0.3mm, 0-1 mitosis, radial phase, no significant regression, no ulceration, negative node biopsy, and now I've got a concerning chest x-ray, and they want me back today for CT scan. I don't know what to think, I feel like this is the beginning of the end and I'm now on a path to the unthinkable. I have young kids, I'm only in my 30s.

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Kerrid74's picture
Replies 6
Last reply 11/5/2014 - 11:07pm
Replies by: casagrayson, Janner, Anonymous, Ed Williams, Kerrid74

So, I was diagnosed with stage 1 a invasive melanoma on my my right upper arm.  Diagnosis was made after WLE and sentinel node biopsy- which were negative for evidence of metastasis.  The surgery was approx. 6 weeks ago.  Life going on, yada yada yada.  Around the same time, my nerves were shot to say the least, I was having some pressure from a hemorhoid I have had.  Here's my crazy question.... I am completely and totally freaking out that it somehow could have spread and or I have anal melanoma.  Had anyone had cutaneous and non-cutaneous melanoma simultaneously or has anyone had cutaneous melanoma that spread to anal melanomA?  I see the gi doc in a week.  But I'm a nervous wreck.  I understand they are two different types if melanoma but they are still related.  Help!? 

 

 

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gordknight's picture
Replies 2
Last reply 11/5/2014 - 8:26pm
Replies by: Gordknight, Janner

Got back from the WLE on my neck for my stage 1a melanoma.  Praying that this is all behind me now.  Have an appointment on monday with the surgeon to follow up and get the results if they are back by then.  I wanted to thank everyone for their support in my earlier thread.  Especially to Janner for being the voice of reason in a lot of threads.

Now I just need to stay offline and stop reading stories about stage 1a'ers that progress to IV within a few years. 

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HappyBeingPale's picture
Replies 1
Last reply 11/5/2014 - 4:54pm
Replies by: Kacey79

Hi All! 

Four years ago I was diagnosed with melanoma but was one of the lucky ones and caught it early enough that all I needed was wide excision and visit to the derm every 3-4months. I have moved a lot recently so I'm seeing a new derm this month so I know I'll have answers soon enough but was hoping you all could ease my mind :) I have two moles on my back that seem to be fairly new, but the odd thing is there are very close together. As far as I can tell (I had my friend take a picture for me) they are not actually touching, which I think is good news. Has anyone ever had two moles that grow so close together that they did a biopsy for them? 

 

Thanks!

S

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katd's picture
Replies 15
Last reply 11/5/2014 - 2:21pm

Any one out there using interferon alpha treatment. Dr are telling me I cannot have another Pet/Ct Scan until I have gone thorugh the treatment (which I have 9 1/2 months left) and then wait 1 month.

katd

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Hello all

on the last meet with my wife oncolog i understood that he would like to study the carachteristic of folks who responded to Z for a long period and put the stick at 18 month (still far target for my wife btw). I would like to report him how many of you had progression or the drug stops to work  after this point. Maybe it is useless and he has this statistics, but it is for free.

TY for your contribution.

Antonio

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brittanyx's picture
Replies 2
Last reply 11/5/2014 - 8:06am
Replies by: akls, brittanyx

A month after I started interferon I had 2 periods in a month. And no I haven't gotten one in a month. Can interferon mess with your menstrual cycle?

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Wolverine's picture
Replies 4
Last reply 11/4/2014 - 4:43pm
Replies by: Wolverine, kylez, Janner

Hello,

 

I am Stage 3C and have been since July 2012.  Would being at this stage disqualify me from being a kdney donor?

Everyday is a Gift so Fight Strong, Live Long

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democat's picture
Replies 9
Last reply 11/4/2014 - 1:29pm

Does mitotic rate impact how fast melanoma will return? I was diagnosed as 3A in January 2013, but told that I was more like a 3B because of my very high rate of mitosis. Does that make it more likely that my melanoma will recur (if it does) sooner rather than later?

 

Roxanne

Stage IIIa/IIIb

since 1/2013

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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