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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RaquelP's picture
Replies 9
Last reply 8/5/2015 - 4:55pm
Replies by: Anonymous, RaquelP, jpg, Ed Williams, arthurjedi007

Has anyone progressed on Keytruda and now has moved on to Opdivo? Wondering if anyone has moved on to Opdivo with success and if insurance approved it.

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DennysGirl's picture
Replies 8
Last reply 8/5/2015 - 3:17pm

a little history... My husband is stage 4 with mets in brain, neck, spine, ribs, pelvis, knee, liver and the largest in right lung and was diagnosed in May of this year. He was on a fast decline and within weeks of death before he was put on Mekinist and Teffinlar combo on June 10th. He responded very quickly to the combo and started feeling great within a week. He has been receiving short term disability through his work insurance which is good for 6 months (4 more months). We filed for SSDI and were approved right away but of course we don't receive any payments til the end of January. He is on FML right now but that ends the beginning of September which means if he doesn't go back to work we lose his insurance (which is covering most of the cost of his meds). 

Does the Short Term Disability payments end if he stops working and tells his boss he isn't coming back? The Short Term payments could get us through the 5 months waiting period without losing our house! 

He feels good now but I'm afraid the combo will stop working eventually and then we will have to reapply for SSDI and still have to wait the 5 months again! 

Renee~loving wife fighting for her hubby! 

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camping_mama's picture
Replies 33
Last reply 8/5/2015 - 12:35pm

Hi all,

New to the melanoma world, with a 7 year old daughter diagnosed about 3 weeks ago.  (T1b, wide exsision and SLNB completed, awaiting results of SLNB).

Have any of you had experience with DMSO and turmeric/curcumin.  I have read a lot about the anti-cancer aspects of curcumin, but many also report that it is difficult to assimilate significant amounts through the diet.

My thought is dissolving in DMSO and rubbing near the area of the primary tumor and possibly the lymph basins.  (DMSO takes anything dissolved in it directly into the skin and cells).  I realize that DMSO isn't "approved" for this use, but it seems that the minor risks could be offset by the cancer fighting benefits.  

Anyone tried it?  Thoughts?

http://www.mdanderson.org/newsroom/news-releases/2005/07-11-05-potent-sp... (one of many reports on the tumor inhibiting quality of turmeric).

 

 

 

 

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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jamieth29's picture
Replies 5
Last reply 8/4/2015 - 10:16pm
Replies by: stars, jamieth29, dfeng, DianaD

Well since my last post about my reccurance this is what happened. I had the surgeon look at spots which are many along my scar. He told me he thought they could resect them however when i went in for surgery this past friday he thought there looked like to many to be surgically removed. He biopsied 3 additional spots. 2 of the spots were negative and one additional spot turned out positive. He told me he could do the surgery but it would require a skin graft. I am afraid if i do the graft that it may just come back again. If I'm 3c unresectable i have access to pd-1. If its resectable then I'm looking at probably a 4 week recovery and then trying to get back into the checkmate 238 trial. I'm meeting with Dr Luke tomorrow and then a plastic surgeon at UC. I hate the thought of leaving cancer on my body if its resectable but that may be my best option to get to a pd-1 sooner than later. I have a pet/ct scheduled for Thursday so the smartest move in my opinion to see what the scan shows...if my body is still clear then maybe go for the resection. I'm struggling big time with the stress. i just wish i had a clear path. The in transit spots keep popping up fast along almost my whole incision. They are very small but obviously a big problem and im worried they are a sign that my cancer is really aggressive. Very nervous about pet on Thursday. I need a doctor to give me a path and just say this is what we are doing and that's it and hopefully it meshes with my opinion. Thanks for the opinions and guidance from everyone here and good luck to those of you having a tough time right now. The last 2 weeks have kicked my ass emotionally and i have to get out of this funk!

Jamie

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My father's melanoma has spread to the brain, lungs and abdomen. His brain tumor responded well to radiation. He then had 4 rounds of Yervoy which were not successful. He has completed 4 treatments of Optivo, but the area around the (dead) brain tumor is now experiencing significant swelling.

The doctors mentioned Avestin but were not sure if there were any statistics about using that to treat Melanoma and in conjunction with Optivo. 

I'd be interested in hearing about any experiences anyone has with this. 

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MarkL's picture
Replies 6
Last reply 8/3/2015 - 9:33pm

Just got diagnosed for second time with melanoma of the scalp (amelanotic melanoma).  Had my first episode in 2010, with WLE and no adjuvent treatment.  That tumor was .74 mm deep.  Latest tumor is 2.15 mm deep and near original site of melanoma.  Excision margins will be too wide for primary closure so skin graft will be required.  Not looking forward to seeing it on the top of my bald head but cosmetic concerns are secondary.

Big question is whether to have sentinel node biopsy.  PET/CT scans are clear.  Sentinel node is in parotid region so afraid of damage to facial nerve and parotid gland.  Would love to hear from anyone who has had lymph nodes removed from this area. 

Thanks,

Mark

Mark

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LaurenE's picture
Replies 6
Last reply 8/3/2015 - 6:44pm
Replies by: Ed Williams, Anonymous, Joe.Pro, Bubbles, Johnjk04, dfeng

Hi, I'm hoping to hear more from those out there who have gone through the combination ipilimumab and nivolumab treatment, either on trial or through expanded access. Has it worked for you? Did it not work? What side effects gave you the most problems - and what helped you through treatment?

My dad is going to start this on August 18th. He'll be traveling for the treatment and staying with me in Ann Arbor, MI each time and I would appreciate any information and insight in order to prepare myself. Thank you in advance!

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Ginger8888's picture
Replies 8
Last reply 8/3/2015 - 2:01pm

I did my last treatment of Yervoy Aug 13th 2014 and so far all scans have been NED..Today i got my new scans and am stll NED..Whoot!!!

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/3/2015 - 1:59pm
Replies by: Ginger8888, Anonymous

My Dr said they changed the upper limit of the normal range from 100 NG/ML to 50 NG/ML, due to Increased risk of hypercalciuria.  What is the recommended level we really be at?

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blden2186's picture
Replies 2
Last reply 8/2/2015 - 9:09pm
Replies by: blden2186, Bubbles

Well ithas been over a year sine I was on this site.  I have been stage 3C for 3 years but have been melanoma free for almost two.  Now I have another tumor on my leg - the 4th round.  I may be getting intothe Tvec trial.  Meeting with oncologist Thursday.  This is getting old. 

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cbeckner98's picture
Replies 4
Last reply 7/31/2015 - 11:11pm

Hi all,

I've written a few times - my Dad has stage 4 cancer in his brain and lungs and went through a course of whole brain radiation in late June.  Since he is BRAF negative, he just had his first dose of Keytruda/Pembro on July 20th - after tapering from steroids in early to mid-July.  In any case, he has been extremely fatigued since and has lost almost 15 lbs in the last two weeks (since everything tastes metallic and/or makes him nauseous).  Given all of this, has anyone had luck with the non-steroidal appetite stimulants?  Has anyone tried Dronabinol/Marinol (a version of marijuana)?  For those of you taking immunotherapy/anti-PD1 drugs after steroids, how long did the effects of the steroids linger on?  I would appreciate any recommendations on food which tastes good - beyond watermelon and pineapple, he isn't eating much (and no protein).  I'm worried that they are going to have to put him on an IV if he doesn't start eating and gaining back some weight.

Also, he just had his first post-radiation MRI on his brain today - 2 tumors were the same, 2 tumors were a bit smaller, and one bigger tumor in the frontal area increased in size.  Disappointing...  We are still holding out hope that Keytruda will make a difference - finally hoping for some good news in the midst of this!!!

Thank you as always,

Carrie

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casagrayson's picture
Replies 5
Last reply 7/31/2015 - 9:19pm

For those of you who have been diagnosed with lung mets, was it found on a simple chest xray, or was a CT or PET scan the thing that caught it?  

Strength and Courage,

Susan

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DianaD's picture
Replies 5
Last reply 7/31/2015 - 4:46pm
Replies by: DianaD, stars, arthurjedi007

It's a long story and complicated, so I'm only going to provide a high-level summary here.  I received a diagnosis of liver disease today, of unkown cause.  I'm being referred to the hepatic clinic at the University of Michigan, where they have a world-renowned hepatic specialist.  It probably takes a long time for an appointment with her, so the goal right now is to get me into the system and seen by any of the doctors there.

Separately, I have two ugly, non-normal looking moles on my back, with all of the ABCDE characteristics.  My GP 's office is making an appointment for me at U of M for that, too--they are going to try to get me into the melanoma clinic, but if that's not possible, they will make the appointment with dermatology.  U of M dermatology biopsied my moles and performed a second excision of a dysplastic mole on me ten years ago, and it took a long time to get an appointment, so today I referred myself to the University of Chicago's dermatolgy deparment, using their on-line appointment request.  I received a message saying that someone would call me within 24 hours.  

Whichever medical center gives me the first appointment will do the biopsy, and I'll use the second medical center for a second opinion, regarding the pathology report and any recommended treatment.  

I'm hoping that I don't have melanoma with metastases to the liver or liver cancer.  Another possibility is that my immune system is attacking my liver (and kidneys--my kidney function is barely in the normal range).  I have Sjögren's Syndrome, which in the most serious and severe form, the immune system attacks the body's vital organs or systems.  There is no cure.  They use a chemo drug in the hope that it will slow the process down and in the hope that the patient can tolerate the treatment. 

The best case scenario is that the meds that I've been on for six years for my autoimmune disorders (I have four disorders) caused the liver damage, and now that I'm off all meds, my liver will heal.  That could take a long time--years, and my liver function may never go back to the level of functioning that I had.  

The worse case scenario is that the liver disease continues to progress, ending in liver failure and death, unless I receive a liver transplant.  

Melanoma and/or any other cancer are also worse case scenarios. 

Thank you for "listening."

 

DianaD

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Julie in SoCal's picture
Replies 12
Last reply 7/31/2015 - 4:43pm

Hi there Friends!

Yesterday I had Pembro infusion #5 and it seems to be working!  When I started this round, I could feel four pea to grape sized in-transits, now I can't find any! Rock Star Doc couldn't find any either (and he's the expert!!!).  So we did the happy dance as he writes NED (no evidence of disease) on my chart again.

The other news is that my Rock Star Doc has moved to a different hospital and they're still getting everything set up for infusions. Their temporary solution has been to use the VIP rooms--nice, big room to myself, private nurses, coffee or tea, and a TV to watch if I so desired. Rock Star Doc said not to get used to it...that might be difficult wink emoticon

 

 

Wishing you all NED!

 

 

Shalom!

 

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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stars's picture
Replies 21
Last reply 7/31/2015 - 11:29am

Hi

I'm sure this topic has been done before, but things change over time. I'm really curious what changes, if any, people have made to their diet and lifestyle after a melanoma diagnosis. My instinct is to try to clean up my act a bit - I don't really drink or smoke, but I'm reading up on plant-based diets and working towards getting a bit more exercise and balance in my life. The book I'm reading is The Complete Macrobiotic
Diet by Danny Waxman - I don't know if I can implement all the changes, but I can certainly do some and they line up pretty well with e.g., the Harvard Healthy Eating Plate.  Thoughts?

Stars

 

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