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 8
Last reply 5/21/2014 - 9:52pm
Replies by: Bubbles, Anonymous, kylez, Janet Lee, BrianP

Can you tell me ate there any people out there who have had long term brain mets. I have just been diagnosed with them and just wondered if I stood a chance x

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BMS has opened an expanded access protocol for their anti-PD1 drug nivolumab. Details can be found here: http://clinicaltrials.gov/ct2/show/NCT02142218?term=nivolumab+melanoma&r...

No sites are open yet, but several sites are actively working on opening up this study. Opening a study like this can take some time, with the delay varying considerably from site to site based on their own rules. 

We will provide updates on open sites as soon as we have that information.

The program will be available for patients with Stage IV or unresectable Stage III melanoma, including cutaneous and mucosal melanoma.

Patients must have progressed on Yervoy (ipi) or some other anti-CTLA4 drug. If the patient has a BRAF mutated tumor they must also have progressed on a BRAF inhibitor.

Patients with active brain metastases are excluded. This includes patients with brain mets who are currently in radiation treatment or who are taking steroids following radiation treatment.

The good news is that anti-PD1 therapy will soon be available to more patients. The better news is that we are likely just a few months away from having one or two anti-PD1 drugs approved by the FDA.

Tim--MRF

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Momrn5's picture
Replies 6
Last reply 5/21/2014 - 9:20am
Replies by: Momrn5, Thandster, G-Samsa, tcell, JerryfromFauq, Anonymous

I am Stage 3a with micromets to the Sentinel node only.  Had scans 5 months ago showed a couple abnormalities.  I had a follow up brain/head MRI and Chest CT yesterday.  The 2 mm and 3 mm nodules in right lung did not grow  and Onc. Told me he feels that they are granulomas and nothing to worry about.  That being said, he wants a follow up CT in 6 months.  The uptake is still " different" on the top of my head, but he said that they feel it's nothing. Possibly an abnormality that resulted from a head injury when I was a kid.  He won't order another MRI for a year.  All blood work including LDH normal.  Now the question....I am thinking of getting my next CT scan locally because of the distance I have to travel. I live in a smallish town in the U. P.   Would people in this group feel OK doing that? Or should I stick with the scans at U of M?   Opinions requested.  Thanks! 

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/22/2014 - 4:00pm
Replies by: Anonymous

If you haven't seen it yet, cancer warrior Megan Kowalewski's dance video set to Kelly Clakrson's "Stronger" is a truly uplifting clip that is sure to make you smile. Check it out at https://www.youtube.com/embed/BaQdwTsVtCY?feature=player_embedded%22

 

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Aloha all!

I will be at Plum Island for 2 weeks next month if anyone wanted to get together - nope not on the island itself cheeky.  If I remember right I will be in the Orient Point area at the Silver Sands motel.  LMK if anyone is interested.  I will be free in the evenings and weekend in between.  I am going for some training on the island.  Apologies for not posting on the OTBB but no one goes there any more.

I hope to see Carole K there and anyone else.

I get in at 7 AM at JFK and will have to wait until 1PM or so to get a shuttle to Orient Point.  How feasable is it to make a run out to the Sept. 11 memorial museum during that window of time?  I will be arriving on a Sun.

Aloha,

Kim

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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SarahW's picture
Replies 3
Last reply 5/21/2014 - 10:13pm
Replies by: Aussielyn, SarahW, NYKaren

My husband has been on the dabrafenib mekinist combination since February. Last Wednesday he started having fever and chills every afternoon and evening and feeling very tired. He is on a 48 hour drug holiday and steroid taper now. 

For those of you who have had these side effects, did the episodes recur once treatment was resumed? Did you have dosage adjustments? Did that work?

 

thanks for your input

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Anonymous's picture
Replies 6
Last reply 5/22/2014 - 2:10pm
Replies by: paul, ecc26, Nadia, tcell, Mat

Hi,

Can anyone tell me when their sided effects started and what they were?  This may be the next step and finding out how soon and what to generally expect would be a great help to me.

Thanks!

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melanomafighter's picture
Replies 7
Last reply 5/30/2014 - 7:43am

Hello...wanted to send hope and positive outlook to all of you...50 months NED....I feel very blessed....

Remember what's important and make everyday count

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mwcollins's picture
Replies 5
Last reply 5/22/2014 - 11:29am

First the AWESOME news. Kevin's scans were clear today!!! This is his first round of scans after the small bowel resection in February where they removed an apple sized tumor, a foot of intestine and 20 lymph nodes (only 1 being positive for melanoma). My question for all you scholars out there is the doctor said his next scan will be in 6 months because of insurance coverage. I know Kevin is very happy to avoid being injected with radioactive isotopes, but knowing that melanoma doesn't 'play' by any rules, I'm thinking 6 months is too long to wait. What are your thoughts? Am I being overprotective or is this the right course of action? Thanks in advance!!!

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Jme's picture
Replies 12
Last reply 5/22/2014 - 10:39am

 

Hello all,
I have posted here before and really appreciate all of the response and advice we have received..I am posting again because I feel like we are starting to get a grasp (if that is possible) on this crazy melanoma world. When you are thrown in.. It takes time to grasp all of the terminology, and take an understanding of our own unique case as we have come to see--every case is different. My husband has asked me to repost his questions specifically so if they are redundant please bare with me:
 
Overview of our diagnosis: we first noticed a cyst like growth on the clavicle area , base of the neck, in September 2013. It was thought to be a sebaceous cyst by our plastic surgeon. It was removed in December 2013. It was a 9mm amelonotic Nodular melanoma located in the dermis which path thought to be a metastasis. Of course, we went searching for a primary site. No other melanoma could be found. In December 2013 we had a wide local excision of this area with sentinel node biopsy (sentinel node was found to be on the opposite side of the tumor). At that time the margins were clear as was the lymph node. PET and CT scans showed no evidence of disease. We followed up in April 2014, (3 month check) with another negative CT scan but noticed that a spot had changed on the edge of the WLE scar. After a dermatological biopsy, the spot was found to be the same. Melanoma in the dermis and metastasis. To date no primary has been found. The biopsy from the 2nd spot was read with clean margins. After reaching out to the melanoma international forum, we were advised to go to a center that specializes in melanoma. We spent May 13-20th at M.D. Anderson. The results of ultrasound, CT, PET, MRI show no evidence of metastasis. They have recommended another wide local excision of the area with possible skin graft. And perhaps local radiation depending on the path findings. (MDA wanted our original slides and tumor for their own path to review) We are BRAF positive. The general consensus is that the primary was probably attacked by his own immune system and likely won't be found. We understood the medical oncologist's reasoning that because the 2 tumors were found in the dermal region-it would have traveled from another source. Because of the size of the Nodular tumor and the recent recurrence we have been staged as a 3b or 3c. (Stage 3, tx, n2c) or perhaps a stage IV if the primary site was distant and that we do not know. We all agree on additional surgery with or without radiation. It is our understanding that we have 3 systemic options: ECOG 1609 (interferon vs ipi) or the combi-ad (BRAF inhibitor) trials or watch and wait. 
 
Questions for the forum: (please excuse if we are asking the same question, as we are trying to still understand all of this)
 
1. Would doing Yervoy (ipi) and waiting on the BRAF inhibitor make sense at this time: our reason for asking is that we are getting differing opinions. One says do the BRAF inhibitor because the success rate is higher. Other says that it is only a temporary fix and we should save this for later should another tumor show up? (We understood that the melanoma becomes resistent at some point to the BRAF inhibitor) Please clarify if we have misunderstood.. 
 
2. This seems like a crazy question-- but does the watch and wait make sense? Our doctor said that there could be a chance that we totally cancer free. 
 
3. We are hesitant about doing any radiation because of the potential complications and the fact that it doesn't really effect survival rate. And that doing radiation may preempt us from future clinical trials.. Thought?
 
4. Does participating in the ECOG-1609 or the Combi-Ad effect our ability to do the anti PD-1 extended trial? 
 
5. We have heard that preliminary results on the ECOG study should be released on June 2 at the big cancer meeting in Chicago. So, what does that mean to us? Would we be able to go to our insurance company with a case (pending good results from study) and get ipi without going into a trial? 
 
6. Since we have been stages somewhere between a stage 3 and a stage IV -- is there anything that we should try without going into a trial?
 
7. Is there any data on the known side effects of ipi? And, any data on whether ipi has the potential for melanoma resistance if taken too early?
 
8. Does taking Yervoy eliminate us from MK3475 EAP?
 
9. Do we qualify now for MK 3475-EAP? If so, who is offering the trial?
 
10. Is there any of the other treatments that would keep us out of MK-3475 EAP?
 
11. We have read that some people leave melanomas in place to monitor the success of drug therapy. Can you explain?
 
Thank you ALL for your support and advice. It makes a huge difference.
Jenny
jennyedwards
 
Posts: 4
Joined: 01 May 2014 14:33
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pigs_sty's picture
Replies 2
Last reply 5/22/2014 - 10:10am
Replies by: Mat, Tina D

Hi,

 

Wife has been on Zel since March this year. Noticed the tumour in her lymph node shrink massively (approx 95%) within the first few days and stayed small since. In the last few days we have noticed the tumour feels different (more lumpy, feels more "withered", just different) but not bigger. Has anyone else expereinced this? THanks.

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sofistef's picture
Replies 8
Last reply 5/22/2014 - 12:45pm

Hi,

 

I had a shoulder MRI today to evaluate a presumable shoulder tendinits, and we received the horrible news that there is in fact a head of the humerus fracture due to a tumor!!. I'm in the phase 3 Ippi/ Nivo/ Ippi+Nivo trial. Last scan showed nothing and my doctor confirmed that the CT with contrast that I get every 6 weeks should have caught this. Next week i will have a PET CT , hopefully it will show nothing, as the MRI showed enough already. I find it so hard to believe that a tumor can grow that fast in a matter of weeks!! We a so floored by the news that I cannot think what to do next. I'm Braf negative . They will unblind me tomorrow to see what I can get. I'm so scared !!

 

Thanks

Dana

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ray39's picture
Replies 1
Last reply 5/22/2014 - 7:31am
Replies by: Tina D

Got my wide excision results today and margins were all clear.  They never said it was definitely melanoma and leaned more toward severly atypical.  Thanks to everyone who responded in my time of crisis.  I have more atypical looking moles so this will be an ongoing thing for me.  I wish you all well and will be praying for you.  

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