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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JustMeInCA's picture
Replies 6
Last reply 11/8/2014 - 6:29pm
Replies by: Carole K, JustMeInCA, Anonymous

I'm hesitant to post this question because: 1) it seems so inconsequential, and 2) I feel rather idiotic, but it's a genuine issue and I'm at wit's end. My dad is Stage IV with several large tumors on his right leg that cause him a good amount of neuropathic pain, especially at night. He, who was never a cat guy, was adopted a couple years ago by an abandoned cat which simply adores him, to the point that if Dad goes outside, the cat sits at the door and yowls.

The problem is that the cat, Sidney, likes to lay on Dad in his recliner. This isn't as much of a problem during the day, but Dad has taken to sleeping in his recliner at night because the pain is more bothersome when he's lying in bed. Of course Sidney now also wants to sleep there with him and wakes him up during the night when he moves and touches Dad's leg. 

I've slept in Dad's bed the last couple nights and locked Sidney in there with me, but he yowls and bangs on the door to wake the dead. We've tried to come up with other solutions, but Dad won't go for anything like a squirt gun or sonic deterrent -- he just says, "No, leave the poor little guy alone."

Has anyone else had to deal with an overloving pet? Any suggestions would be greatly appreciated.

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Steve2142's picture
Replies 7
Last reply 11/8/2014 - 4:13pm

My BRAF results came in and I am negative so yervoy is next in line for my very very advanced melanoma.   Prior to that though, they need to radiate 5-6 brain mets via SRS.  They are suggesting that we do both at the same time to see if yervoy results are a little better.  Anyone heard of this?  Any thoughts?  Thanks

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yazziemac's picture
Replies 8
Last reply 11/7/2014 - 4:19pm

Hi

I've posted before and read the boards often.  My husband, Peter, had a CAT scan today and I was told an hour ago (when I got home from work) that his melanoma has spread to his brain.  A 2.5 cm tumour in the right frontal cortex ( I think...)  We will be meeting with the radiation oncologist tomorrow at 9AM.  I'm so sad and scared, my husband is only 56.  But, I am inspired by all of the wisdom and experience here.  I'm trying to be brave, but I'm failing quite miserably.  His original site was on his neck and he's had 2 surgeries and 33 radiation treatments to date.  His neck dissection was in Feb/14 and radiation ended in late May/14.  His CAT scan in the summer was clear. So, any words of wisdom before our appointment tomorrow?  Thanks in advance :)

Yasmin

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I was hoping everything would be shrinking and the pd1/radiation combo would give a good story of how they worked great together for me. True to form today Dr. Linette my local doc gave me yet another bad report. The only good one I've ever got was in August at Mayo. But I must agree with what he is seeing, what I'm feeling and his treatment recommendations.

They weren't able to compare it to the Mayo scan in August but with their April scan.

What really suprised me is the T12 and L2 they radiated says "There is persistent intense uptake with the T12, L2 and L4 vertebral bodies." I assume that means the radiation didn't work? Radiation was completed 6 weeks ago. If that's so then I wonder about my head because all the report said was it was new because they compared to the April scan where it didn't exist yet. I was thinking about seeing if they could radiate my knee and maybe my pelvis but now I dunno. About 10 days ago my knee started hurting like crazy making it very difficult to walk. The scan shows a tumor in my knew and the growing one in my pelvis which also hurts a lot.

So overall stuff has grown although some stuff has shrank. The huge one in my shoulder still has the necrotic center but the tumor has grown and changed shape to 11.5 x 7.1 cm from 8.7 x 7.7 cm in August. Other stuff grew too.

So I dunno. I'm very depressed. He did talk about ERK or ERG trial. Whatever it's called. It's like BRAF just further down the gene chain and is phase 1. The BRAF stuff never did anything good for me (ie: never shrank nothing) so I doubt if that would work for me either. Although the taf/mek combo did keep a lot of tumors from growing just never shrank stuff. Neither did zel.

He also mentioned NIH immunotherapy (ie: TIL ACT stuff) which was already my plan B so I called the number they gave me and left a message. I dunno if I'll get in. They said it is very difficult to be accepted. With my leg acting up I just dunno. Maybe this latest dose of PD1 will make it better.

So that's my news. Since some things are still shrinking that means the PD1 is doing some good so they are keeping me on it. So I got my 9th dose today.

I'm sorry. I've always tried to be uplifting with a never quit attitude. Now I'm just very depressed and having a hard time taking all this in. I'm trying to focus on the good Rosenberg stuff. Like it's basically a 50/50 chance. 1 in 10 are cured long term. 4 in 10 have long term durable response. At least that's what I seem to recall I read. I know we've all been through so much. I just dunno if I can dig even deeper for one final treatment. Maybe I'll feel better tomorrow. It's been a rough couple days with scans yesterday and this news and stuff today. May Jesus grant me the strength and courage and whatever else I need to get into and through Dr. Rosenberg's treatment.

Artie

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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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