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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Millykamp's picture
Replies 23
Last reply 8/7/2015 - 5:58am
Replies by: Millykamp, stars, jvictoria, Mrs.GL, DianaD, Anonymous, dfeng, JoshF

I have been having mixed emotions the last few days.. I try talking to people,about it but I don't want them to think I am one of those people that is overreacting on something that is nothing. I lost my dad to cancer when he was 38, pretty much lost half of my dad side of the family to cancer.    Now that I am 37 and found out I have melanoma the past few weeks has been nothing but biopsy, and more yet to come.  along with upcoming wide excision and SLNB.   I know my cancer is nothing to worry about.  But it's always on my mind.. I guess I am scare of not knowing what to expect.       I am just curios.... Do people ,ever get those days where you just wanna have a big hug and just cry???

 

i am so glad I found this site and glad to see people' from around the world just come together and support one and another .    Thank you!!! 

Melissa 

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Just wanted to take a moment and ask everyone to say a prayer for T Jerry. I recently heard he is not doing well. He has been a great support, friend and wealth of knowledge to many. 

 

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Replies by: Christine.P, mrsaxde

My surgeon predicts the very large melanoma on my right calf a few inches above my ankle is going to need a skin graft and plan to use a wound vac for about two weeks to see if he can "close" the wound a little more before performing the graft. 

Has anyone ever had one of these? What is it like to live with a tube coming out of your leg? Any pain or just an inconvenience (e.g., no showers for 2 weeks, etc.)? 

Thank you!

Christine P. 

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Anonymous's picture
Replies 8
Last reply 8/6/2015 - 11:08am

My husband was diagnosed last month with stage IV BRAF melenoma. No primay site found, but it is in his duodenum and may have some spots on the mesentery of the small bowel.  He had one lymph node removed from  under his left arm that was also BRAF melanoma.  He has just started on his chemo meds. He is taking Tafinlar + Mekinist.  3 days in he is doing well with it and so far has a wonderful appetite.  Any one with any information or experiences with these two drugs?

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heg50heg's picture
Replies 2
Last reply 8/6/2015 - 8:37am
Replies by: Janner, stars

Its been a while since I have had to ask questions on here as I hve been having good scans for the past 4 years. Have had several biopsies which have came back posative over last years but all have been negative.

My question to all is : Can you get a melanoma spot on the elbow as I have a rather unusual loooking spot that has popped out and looks kind of like the brown spots that I have had biopsied in the past only this new spot is puffed out a bit and looks a little jagged , but in the same token it does not look like my first melanoma which did in fact look like a large dark mole. So just wondering if a mel could pop out on an elbow like this.

Thanks Harold Grieshop  4 year styage 3 survivor

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DianaD's picture
Replies 6
Last reply 8/6/2015 - 12:59am

I will be having a biopsy of the two moles on my back on Monday, Aug. 10th, at the University of Chicago.  Dr. Farah Abdulla will be performing the biopsy. 

DianaD

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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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