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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dolphin5's picture
Replies 1
Last reply 11/23/2013 - 2:08pm

We have tried them all, I think.  Low fiber, BRAT, chicken soup you name it I have cooked it for her.  No sugar, no milk, no red meat, no spice etc.  So, now the doctor has increased her steriods to six a day for the next six days.  Still diaherra, weak but she did say I THINK I am feeling a little better.  So, now I am looking at yogurt.  I cannot find anything that says NO.  Has anyone that is on Yervoy tried yogurt to help with diaherra?  I want to thank all of you that responded to my last post.  One note.  As far as for my wife, BioChemo was nothing like the side effects of Yervoy but if it works, well we will get thru this.  Thanks again.   

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Brendan's picture
Replies 6
Last reply 11/27/2013 - 4:22am
Replies by: Mat, Brendan, Anonymous, POW, awillett1991

Hi Everyone,

[I posted this on MIF as well]

 
I have not posted in a while but I continue to read daily.  After Craniotomy #2 in June I enjoyed NED status for about 4-5 months.  I recently had a brain MRI and a chest, abdomen, pelvis CT.  The brain MRI looks good (no signs of anything new and surgical cavity continues to improve).  Unfortunately, two new mets were found in my lungs (2mm in left lung and 16mm in right lung).  
 
The appointment was Friday at 5pm so I will have to wait out the weekend before anything happens (phone calls, planning, etc.).  I am UPenn in Philadelphia and my doctor is a melanoma specialist.  It might be difficult for me to get into a PD1 trial because I have been on some type of steroid since Feb 2012 (now on prednisone 5mg).
 
Here is my melanoma history:
2008
Sept-Stage I-left ear-SNLB negative
 
2011
Sept-Stage IV-left lung (23mm met)-NED after lung surgery-then ipi.  
 
2012
January-ipi leads to hypopituitarism (still NED)
June-brain met discovered
July-Cyberknife for brain met #1
Sept/Oct-second round of ipi 
November-Crani #1
 
2013
April-brain met recurrence
May-GammaKnife for brain met recurrence 
June-Crani #2-Gliadel wafers left in surgical cavity
November-2mm met (left lung) and 16mm met (right lung); normal LDH (138)
 
My only mutation is P53
 
So ... Here were the options we briefly discussed:
 
Goal #1 is to find find a PD1 trial.
Other possibilities:
-surgery on right lung
-radiation/ipi combo (but doc is not sure about round 3 of ipi)
-TIL at NCI
-IL2 
-Ipi + IDO (new immuno) Phase 1 trial (I just heard of this one)
 
Going into this appointment, I was ready crani #3 (going for JAG's record) so this was quite a curveball.  Thanks for reading.  Any suggestions would be appreciated.  
 
Happy Thanksgiving!
 
Brendan

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Cgillett's picture
Replies 3
Last reply 11/24/2013 - 11:23pm
Replies by: Cgillett, tasjacques, POW

Hi my name is Carol and my brother has stage IV metesatic melanoma with no skin lesion. The tumors have been very aggressive and are in the peritonium and lymph nods. He has been through bio chemo with il2 and then yervoy! Nothing was working . He is a nras not braf which has limited his treatment options.   He was blessed to be accepted into the Merck trial drug. The first 3 treatments were fantastic. Little side effects  and the aggressive tumor was shrinking rapidly.  He's voice was stronger every day his skin was back to normal no more flaking, he could sleep and eat.  Things looked so so promising. His fourth treatment was a week and a half ago and suddenly his voice was getting weak and he feeling bad again.  He's stomach is beginning to grow again and he is scared and very down.  It seemed so positive and now right before the holiday and 1 week from his scan we feel uncertain and slightly worried. Does anyone have any information or experience with the pd1 working so well then just seemingly stop working instantly? I would be gratful for any insight that I could share with  my brother and family.  For all of the warriors fighting this monster, you are my heros and my prayers are with you daily.  Your battle is not for the faint of heart and each day is a victory. 

God Bless and In Jesus Name,

Carol G.

Sister Warrior

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cep3700's picture
Replies 8
Last reply 11/29/2013 - 7:35am

Hi Everyone,

I have posted a few times about my issues with getting all of my mothers paperwork in order from multiple dr's and trying to get it all to MD Anderson. My mother is getting worse by the day. She has multiple large brain tumors and just finished her WBR. We were supposed to start Zel treatment for her cancer in her abdomen, spleen, lungs, ovaries... Her stomach swells more and more each day.... She was supposed to have the Zelboraf by today, but we went to the office, and THE DR HASN'T EVEN ORDERED IT!!!! 

I cannot wait any longer, I have to get my mother into MD Anderson ASAP. 

Does anyone know anything about the MD Anderson Emergency Room? Is it only for current patients? We have our paper work sent into them, but still waiting for an appt with an oncologist... we have been waiting 3 weeks. Im scared that if I dont get her there soon it will not be good, and then I will blame myself. 

Should I just take her to the MDA ER? Anyones advice will help! I feel so helpless!

Thank you all,

Colleen 

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MattF's picture
Replies 17
Last reply 11/25/2013 - 1:12am
Replies by: MattF, Mat, casagrayson, POW, awillett1991, BrianP, ecc26, Anonymous, Tina D, G-Samsa

Well the medical oncologist just emailed me ...

after PET scan had found 2 hypermetabolic nodes and 4 suspisious bone foci 

I was ready to have my surgery team go for surgery of the nodes in neck (2nd dissection)

but the oncologist said he thinks surgery will not be any benifit and just more trauma on area. he said there were enough "other" things on PET to suggest metastasis....thicking of pituitary stalk, multiple bone foci and two lymph nodes.

He wants me to come in asap and go over what course of systemic treatment is best. He leans toward the BRAF Inhibitors....

Thoughts?

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awillett1991's picture
Replies 11
Last reply 12/7/2013 - 9:41pm

After cardiac surgery in Sept I went on Dabrafenib. Then added Mekinist. I could not tolerate the Mekinist so I went back to just Dabrafenib.  Been on it 8 wks .  

Today my onc said it was so clear I was responding and he was thrilled. I even have a patch of vitiligo which he said they have seen with dabrafenib or could be the Ipi I finished a year ago or a combo of dab and the anti pd1 doses I had, who knows? Anyway, just thrilled and thankful to God!

Amy

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Tina Botes's picture
Replies 3
Last reply 2/17/2014 - 2:01pm
Replies by: ukritam, Tim--MRF, fortiz

My husband was diagnosed with stage IV melanoma two weeks ago after a large brain tumor was removed. The tumor was 6cm x 5.3 cm x 5.2 cm and was a metastasized melanoma. What started out as suspected depression 8 weeks ago turned into a nightmare roller coaster ride.

The tumor was removed completely and a PET scan last week showed no other tumors - it did show however that he has Polycystic Kidney Disease (which explained a lot of his health problems). His kidneys are both significantly enlarged and misformed with multiple cysts, he also has cysts in his liver and spleen. His mitral valve is no longer functioning 100% and and and... Within a week he came face to face two enemies! Either one of the two will kill him. The oncologists though aren't even bothered by the PKD. I suppose melanoma is a bit more urgent than the fact that his kidneys will fail in a few (5 - 10) years.

He was at the dermatologist yesterday. The dermatologist took two skin shavings, but he said there is nothing even remotely resembling a primary tumor. We will have the results for the skin shavings tomorrow, but I suspect they will be clean since this is what the dermatologist said.

My question is really this: the oncologist recommends a single SRS session in two or three weeks and then nothing - just scans every three months. It feels so unsafe! They say without the SRS the brain tumor will be back in less than 6 months, with the SRS it can be longer. Shouldn't the treatment be more aggressive? Since the melanoma spread through his blood, shouldn't we try to do something more than wait?

I know there are other South Africans on this forum - please can you tell me who the oncologists are that know melanoma?

My hubby is 51 going on 30 - he has always been energetic and adventurous. Four weeks after his craniotomy I'm fighting to keep him off his motor bike. He still had staples in his wound when he was back on the driving range to check if his swing is still OK.

 

 

 

 

 

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wilsonjm2003's picture
Replies 7
Last reply 11/22/2013 - 4:50pm
Replies by: wilsonjm2003, Tim--MRF, ecc26, Gene_S, Anonymous, Tina D, melissa ann

My wife was recently diagnosed with Stage IV melanoma (the initial diagnosis was in February 2013, following a biopsy of mole on her scalp).  She has already had three surgeries (sentinel node biopsy in March; full lymph node excision of left neck in May; and excisional biopsy of lymph node in right neck in November) and four does of ipilimumab (10 mg/kg) as part of a clinical trial.  We (mostly I) are obviously devastated by this news, but trudging forward to identify the best next treatment.  We are currently considering interleukin-2, trying to enroll in a trial for PD-1, or sticking with ipilimumab even though her cancer has progressed since she was treated with it (although this is the lowest of our options).  Anyone in a similar situation have any thoughts on experience with IL-2, PD-1 (nivolumab) or Yervoy (ipilimumab)?

Thanks.

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Maureen038's picture
Replies 12
Last reply 12/7/2013 - 8:04pm

Tim,

  POW wrote a very valid post on the importance of the threaded archives. All patients and caregivers deserve an answer to whether its possible to bring this back or not. It is critical to all of us and every effort should be made for it happen. We deserve an answer from you.

maureen

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CasieLV's picture
Replies 2
Last reply 11/20/2013 - 10:28am
Replies by: SABKLYN, Germer

Hi all,

I have been cancer free for 20 months and at my recent dermatology check up I had to get a mole on my back removed. I am waiting for the biopsy results to come back. How do you deal with the stress and anxiety of the fear that your melanoma might come back?

 

Casie, melanoma stage 3 survivor and co-owner of Wear Awareness

www.wear-awareness.com

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Alli's picture
Replies 3
Last reply 11/25/2013 - 6:09pm

Anybody still out there?? It's been a while.

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NYKaren's picture
Replies 10
Last reply 11/24/2013 - 4:29pm

I saw Dr. Pavlick today. I don't know why, but I was a wreck before-hand. 

When I messed myself up by staying off Tafilnar for 3 weeks, I wound up with 17 small brain mets, which were gamma knifed. Luckily, my lymph nodes were still clear. 

I have a follow-up MRI on Dec 16th and then seeing neurologist right after that.

As I'm typing this, I'm wondering why I didn't ask her about phase II PD1 trial; we just discussed phase III, and how it wouldn't be good for me. I will call tomorrow to ask about phase II trial. 

ANYWAY, her plan is, after brain is deemed stable, to add another MEK inhibitor. Apparently, they've gotten really good, long-term results with this combo, and hopefully that will hold me over until PD1 is FDA approved, before 2015. 

I'll find out about phase II trial and report back. 

Karen

Don't Stop Believing

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aldakota22's picture
Replies 11
Last reply 11/20/2013 - 12:00pm

Had Cat Scans  Sat. 11/16. Saw doc @ NYU Clinical Cancer Center this afternoon11/19. Results were as good as it gets.Dr. Anna Pavlick says all the liver.kidney, blood levels were great and the scans were clean.This is after taken off "Z" and switching to Tafinlar (dabrafenib) on 8/25 My run with Zelboraf was just 2 weeks shy of 2 years..This news came just in time to ease my anxiety.As tomorrow I leave for San Diego to board a cruise ship on Thursday for a 15 day cruise to Hawaai with a stop in Mexico.Always wanted to visit Pearl Harbor and the Hawaaain Islands.This is right after spending last week in National Harbor ,Oxon Hill,Md. with grandkids & son & daughter-in-law. National Harbor is just outside the D.C. city limits so spent the week sight seeing.I just wanted to post some good news after reading so much bad news recently on the bulletin board.Like all of us here just hoping to be here when medicine finally finds the way to live with melanoma as a chronic condition.Praying that day comes soon .You are always in my prayers.Beat the Beast.      Al

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cep3700's picture
Replies 4
Last reply 11/20/2013 - 10:34am

Hi everyone, 

My mother is undergoing WBR for multiple brain mets, and should be going on zelboraf soon. She also has extensive metastatic melanoma in her abdomen, spleen, lungs, and ovaries. We are in Baton Rouge LA, and trying to get to MD Anderson asap. We havent been getting the care that we need here, everything is taking forever, the radiation machine keeps breaking, which causes my mother to miss her scheduled appointments, and also we were supposed to receive the zelboraf last week and still havent received it and no one will return our calls. We keep getting the run around, and my mother will not last long with this type of care! 

We have been in touch with md anderson, but the woman that was assinged as our contact person forgot to add us to the list, and keeps messing up the paper work. we sent her biopsy results two weeks ago and she still hasnt updated the records, which still say "waiting for biopsy". 

Do you think that we should just take my mother to MD Anderson this week and wait for an appt? would it help that we are there in person? Could they finish the WBR there? (she has 5 days left) Does it normally take a long time for the zelboraf to come in? 

Thanks for all of your support, I read the messages everyday, and I have followed a lot of your cases and learned a lot of information from all of you! Thank you!!!

-Colleen 

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MattF's picture
Replies 6
Last reply 11/20/2013 - 12:06pm

I got a PET CT (as a pre test for clinical trial) 6 weeks after surgery, a parotidectomy and right neck dissection.

PET CT report is in and it absolutely confirms to hypermetobolic nodes.

I sent it to my surgeon at City Of Hope and she called directly to my cell today with a plan to get me in next week to start to prep for surgery.

My melenoma onc is at the conf and I will try to talk to him this week to make sure this is the plan to have surgery.

Report, both PET and CT both showed a sclerotic focus on my right humerus. not sure what to think about that.

 

Matt

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