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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cbs805's picture
Replies 6
Last reply 5/13/2014 - 8:18am
Replies by: Tina D, cbs805, sweetaugust, Anonymous, arthurjedi007

Interested to hear how patients are doing on expanded access PD1.  My husband has had chemo, surgeries, radiation, Cyberknife, 2 rounds of ipi and now 2 doses of PD1.  After first dose his LDH was lower and he has been feeling better than he has in a year.  He was diagnosed in April 2013.

CBS805

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Erin_H's picture
Replies 6
Last reply 5/13/2014 - 8:27am
Replies by: Tina D, BrianP, Erin_H, Linny

Hello all

 

Sadly after 13 yrs melanoma returned. My primary was on my face and the new tumor was removed from my hip. 

Both times all scans came back clean and did not spread at the time. After getting the a-ok from the scans this time, I have been acting like I had Stage II in 2001 because the tumor this time was localized. Then I spoke to a doctor friend who gave me a reality check about the scariness of distant recurrence. 

Is there anyone out there that is facing something similar with distant recurrence and any advice. I'm going to visit a few specialists. 

I had Stage II at 24 and now Stage IV at 37 and I have a beautiful 2 year old that I want to see grow up. 

-Erin 

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jangle's picture
Replies 10
Last reply 5/13/2014 - 12:31pm
Replies by: Tamils, POW, Anonymous, Becky, AnitaLoree, kylez, jangle, mau

My nephew (12 year old) is at Kaiser in Oakland CA with metastatic melanoma in his central nervous system.  They are getting BRAF results this afternoon I believe.  He was hospitalized with vomiting and a seizure 2 weeks ago and had several spinal taps before the melanoma was confirmed by a surgical procedure.  Sorry for the sketchy info - I will add more details and clarify when I can.

I am trying to help them locate suitable specialist docs or clinics in the area (or anywhere for that matter) that they could be referred to.  As I understand the situation, Kaiser doesn't currently have a suitable specialist and will refer them out, but I don't know how hard the process will be nor what it will involve.

We need to act fast and I'd like to help them get through the red tape if possible.

Thanks for any help or experience you can share.

joe

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JoshF's picture
Replies 8
Last reply 5/13/2014 - 2:03pm

Hi all-

well it's been 3 months since I had scan after completing trial of ipi then HD IL-2. I did ipi Oct-Dec last year and then IL2 in Jan. Scan on Feb 17...NED. Scan yesterday....NED!!!! Obviously I'm very happy but I can never lose uncertainty. First question I ask is what is prognosis in comparison to other patients who've responded like me. Is it the IL2 or ipi...or both???? It's like I almost feel guilty or it's too good to be true. Am I crazy or is this normal? 

So my oncologist gave me option of scan in mid August or push it out to beginning of Oct. she felt comfortable waiting as she said there is no disease to track. Am I crazy for doing this? The rationale is over exposure to radiation as like many of you...I've had my fair share of runs through the tube! The study I'm on requires scan in Oct-Nov as this is the 1yr time frame.

i hope everyone here is well. This site and many of the people have been a tremendous resource & support. I can only hope that treatments that have a broader scope in helping people are in the near future....c'mon PD-1!!!!

josh

Let's work for better treatments....for a cure!!!!

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ray39's picture
Replies 3
Last reply 5/13/2014 - 3:21pm
Replies by: ray39, sweetaugust, Anonymous

Still waiting on biopsy results but been doing research.  Why did I have what appears to be a shave biopsy?  The growth appears to be gone but the research I've done doesn't recommend this for melanoma situations.  Man this is frustrating!   The punch biopdy would have given a better idea of depth it appears.  

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Linny's picture
Replies 2
Last reply 5/13/2014 - 11:07pm
Replies by: Anonymous

This looks like a good trial for Stage III patients. You may want to ask your doctor about this one!

 

A Study of the BRAF Inhibitor Dabrafenib in Combination With the MEK Inhibitor Trametinib in the Adjuvant Treatment of High-risk BRAF V600 Mutation-positive Melanoma After Surgical Resection. (COMBI-AD)

This is a two-arm, randomized, double-blind Phase III study of dabrafenib in combination with trametinib versus two placebos in the treatment of melanoma after removal by surgery. Patients with BRAF V600E/K mutation-positive cutaneous melanoma that has been completely removed by surgery but who are at high-risk for recurrence [Stage IIIa (lymph node metastasis >1 mm), IIIb or IIIc] may be eligible. Subjects will be randomized to receive either dabrafenib (150 mg twice daily) and trametinib (2 mg once daily) combination therapy or two placebos for 12 months

http://clinicaltrials.gov/ct2/show/NCT01682083

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/14/2014 - 12:54am
Replies by: kylez, Anonymous

Has anyone with brain mets had issues with falling off to sleep amd then kerning away. I have had this the last couple of nights and am now panicking that the vem is no longer working?

Thanks

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arthurjedi007's picture
Replies 3
Last reply 5/14/2014 - 7:45am
Replies by: Anonymous, Fen

Dunno if anyone is interested but the MK-3475 EAP at the Rochester Mayo took exactly a week for them to file all the papers. Then apparently they are having to wait about a week but they are not sure yet for the medicine to arrive. I assume that is only for new patients. So far so good.

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rgrand's picture
Replies 3
Last reply 5/14/2014 - 11:05am

On Thursday I will have the melanoma removed from my foot and a skin graft. They will take the skin from a donor site on the side of my abdomen.

They will also be doing a SLNB at the same time.

The full thickness skin graft on the sole of my foot is about a 3" circular area.

Has anybody undergone something similar? How long does it take to heal from this and when do you think I will be able to drive and walk on the grafted skin?

thanks!

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sofistef's picture
Replies 7
Last reply 5/14/2014 - 1:49pm
Replies by: Brendan, Rod, sofistef, Tina D, BrianP

Hi,

I received the results of the ACTH test today and was told that I am adrenal insufficent, I'm stage 4 on Ippi/ Nivo/ IPPI+NIVO trail, I don't know what medicine I'm getting. First two sets of scans showed stable in the only confirmed melanoma spot and nothing new. The MRI I had a month ago, when they suspected adrenal insuficiency showed no pituitary inflamation.Also the Dr told me that I will start some thyroid med as well.

I'm still no feeling great, and this makes me nervous abut the next scans due in a couple of weeks.

Did anybody experience this? Was this a sign that the treatment is working? Is this a permenent condition?

 

Thanks

Dana

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kpcollins31's picture
Replies 5
Last reply 5/14/2014 - 3:24pm

Just curious how many of you seek "pre-approval" of certain procedures through your health insurance carriers. I have good insurance so I never really thought about it - if a doctor tells me to have a CT or a PET scan, I just do it. Same with surgery. My thought has always been that I will not let some bureaucrat dictate what treatments I should or should not have as that is a choice for me and my doctor. If the insurance denies something, I can deal with it afterwards. For example, they recently deemed general anesthesia and an epidural as "not medically necessary" for open abdominal surgery which I thought was kind of funny... we got that fixed.

I ask the general question because my PET scan is coming up next week and I received the letter from the hospital stating that I should ensure that I am preapproved by my insurance prior to showing up for the appointment.

Kevin

   

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llmercll's picture
Replies 16
Last reply 5/14/2014 - 4:31pm

I've had a fairly large mole on my back for as long as I could remember, I've never really given it a good look until recently however. Over the past year I've spent a great deal of time in bed on the computer, lying on my back, and one day I noticed my mole was "stinging". I checked it out in the mirror and noticed there was a black spot on the mole, taking up maybe 20% of it. I figured I'd watch it and see how it does before going to a doctor. 

It's been 3 months and I don't think it's grown much, if any, at least not in width. It has a very "mole" like feel to it, and I can move it around a lot with my finger, I don't find it particularly odd except for that black spot. It doesn't sting anymore. If it grew at all over the past 3 months it might have gotten a bit "puffier". Unfortunately melanoma is often multicolored, and thats exactly what the problem is. And nodular melanoma grows in depth, not width, so that scares me too =( 

I tried making a dermatologist appointment but my medicaid requires me to get a referral, and I don't have a primary care doctor. I probably won't get to a dermatologist for another week or two because of this. I know it's critical to get early treatment of melanoma, so this is upsetting me greatly. I'm getting really anxious thinking about cancer, and would like someone to just take a look at at a picture of the mole and let me know what they think. 

http://img209.imageshack.us/img209/3209/dscn2452j.jpg 
http://img502.imageshack.us/img502/9726/dscn2469.jpg 

Also if anyone knows a way for me to get a referral I'd really appreciate that too. 

thanks so much to whoever helps out, I'm hoping for someone knowledgeable to come along and ease my nerves, haha

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/14/2014 - 5:34pm
Replies by: Anonymous

I am a stage 4 mm patient and currently on vem. I have mets in several places including my brain and wondered whether the location of mets made any difference as to whether you will become a complete or partial responder x

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Mavbus's picture
Replies 3
Last reply 5/14/2014 - 8:51pm
Replies by: Ginger8888, Lil0909

My name is Donette. I had my first interferon treatment yesterday afternoon.  I started vomiting about 2 hrs after the treatment. For about 3 hrs. I hope and pray today's treatment is better.  I did call the dr and got on anti nausea med. Took one about an hr into getting sick. Wondering if it'll help if I do it sooner. 

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