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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Scuba Doc's picture
Replies 2
Last reply 5/12/2014 - 8:39pm
Replies by: Bubbles, rosa1

Anyone know if any hospital starting the Expanded Access Program ( EPA ) for MK-3473 (Lambrolizumab/Pembrolizumab) is allowing melanoma patients to participate in the  EPA without having taken Ipilimumab first?

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Replies by: BrianP, JerryfromFauq

So of the trials available, those two seem like the most promissing. I am currently stage III, but am preparing for the inevitable IV, which is when I'll be ellegible. 

I'm thinking of first going with BRAF/MEK/PD-L1 combo because it seems like it's less drastic (TIL trial involves first nuking my entire immune system and being a bubbleboy for a month). 

From lurking around the forum, it seems like BRAF/MEK combo is almost always a temporary bandaid, and the cancer tends to come back. Is this always the case? Is the combination with PD-L1 meds more likely to result in long-term remission, or should I go straight to TIL?

How effective is BRAF/MEK/PD-L1 and TIL at preventing brain mets? This is my worst fear. Given my line of work, even mild cognitive impairment could ruin me.

Anyone who's been through either is welcome to share their experience. How'd it turn out? What side effects did you get?

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DZnDef's picture
Replies 10
Last reply 5/12/2014 - 10:44pm

Hi all,

I am Stage IV with  mets in 1 lung (13mm, 6mm, 3mm).  Unknown primary, and no mets anywhere else (yet).  BRAF V600E

I have seen several doctors all of whom want to start treatment right away but I am still weighing my options.  Here are the treatment paths that have been offered to me:

1)  Yervoy followed by Anti - PD1 if Yervoy fails - (Dr. Steven O'Day, Beverly Hills, CA)

2)  Clinical Trial # CMEK162B2301 - MEK162 and LGX818 BRAF inhibitor OR Vemurafinib (blind study) - Dr. John Fruehauf, UCI Medical center

3) Stem Cell vaccination trial (don't know number but here's a link to their site describing the trial) http://www.californiastemcell.com/cancer-stem-cell/  - I don't have a doctor for this one yet, just found it, but it looks promising (either 67% or 50% success rate, I'm unclear.  Seems way too high).  I have been emailing with the trial contacts who have forwarded my information to the head doc.  Waiting to hear back.

4) Surgical removal of all mets (lung surgery) - Doctor Shigeru Chino, (he removed my first met in 2012 from my right lung - which was misdiagnosed)

Apart from the surgical excision in 2012, I am a melanoma treatment virgin.  Does anyone have experience with any of these treatments?  Is there a particular sequence I should try them?  From what I've read on their site, option 3 is the "easiest" on the patient (fewest side-effects) and seems to have a reasonable success rate.  I just haven't read/heard much about it.  Option 1 seems good in that I know Dr. O'Day has loads of experience with these drugs.  But I'm concerned about my newly super-charged immune system going rogue (I'm deaf because of autoimmune problems).

I am currently seeing a Holistic practitioner of Naturopathic Oncology (Dr. Kristin Stiles Green, N.M.D., Thousand Oaks, CA) who is working on getting me to optimal overall health prior to starting any drug treatment.  She will also work with me during treatment in an effort to minimize any side effects and keep me otherwise healthy.

This is such an important decision and I just don't feel "qualified" to make it.  My loved ones just look on helplessly and tell me its my decision.  I'd welcome any input/advice/personal relevant experiences.  I will make my own decision for ultimately what feels right for me, but I would like more input from others before deciding.

Thanks so much for your help, everyone!

Maggie

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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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