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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Anonymous's picture
Anonymous
Replies 7
Last reply 11/10/2014 - 6:47am
Replies by: rick1981, enatti, GAngel, Anonymous

I was really curious if anyone has tried the cannabis oil and it was reduced their cancer or know anyone who has? I've been doing a lot of researching about it but wanted to know if anyone had their own experience with it.

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Colleen66's picture
Replies 4
Last reply 11/9/2014 - 5:07pm
Replies by: Colleen66, Janner, Anonymous

Is there any difference between Nodular and Cutaneous Mel?  And would a Second Primary (other leg than original) be the same type (look the same) or be different?

Thanks guys...Colleen

Live!

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Patina's picture
Replies 4
Last reply 11/9/2014 - 3:01pm

My Mom went in earlier in the week for her CT scans and the tumors are continuing to shrink or have completely disappeared.  When all of this started she had tumors in her: lungs, kidneys, liver, adrenal gland and 18 or so tumors on her scalp and one tumor the the size of a birds egg on the back of her neck. In addition she had 25 brain mets treated spanning two separate occasions (12/9/13 8 treated, 4/15/13 17 treated). 

Her doctors and we are thrilled and its been less that 1 year since her diagnosis and the start of treatment (12/9/13). She's done fantastic with Gamma Knife followed up with starting Yervoy within the week.

During this week's visit her doctor gave us some numbers to go along with what he believe's is her outlook is. Here it is:

Based on how she has responded to Yervoy (very quickly & all tumors) he believes that she is firmly in the group of people who, at 5 years, had needed no other treatment.  - 92% after 5+ years of tracking have had no other treatments and the 8% who needed additional treatment seem to respond to Keytruda ,as well as or better than, they did to Yervoy. So, we know the next step if one is needed.

Considering where we were last year and the fact that her brain mets were completely missed by the original radiologist she is one very lucky woman.  

I hope one day everyone has these results. Medicine/Science has come along way and the treatments can only get better from here.

 

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Replies by: Anonymous, Bubbles, BrianP

Dunno if anyone is still interested in Antibody Drug Conjugates but they have trials for them at Sarah Cannon in Nashville. I'm still planning on TIL first but thought I should mention it.

http://sarahcannonresearch.com/for-patients/search-clinical-trials/melan...

Artie

 

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SMGY1978's picture
Replies 2
Last reply 11/8/2014 - 6:34pm
Replies by: Carole K, StephyD83

We're in Illinois (Chicagoland).   Our 8-yr-old had a mole on his scalp, diagnosed as Melanoma.  (Stats 2.1 Breslow, Clark IV, 3/mm mitotic index).   Normal bloodwork, so we're optimistic.  Tomorrow, they'll confirm his surgery date/details.  Tentatively, they're planning to do a wide excision & SNB on Nov 7th.   I'll keep you posted.

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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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