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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Aundrea's picture
Replies 12
Last reply 4/15/2015 - 1:24am

For those of you who are NED survivors, I would just like to see some statistics.  Make it short and sweet.  My husband is IIIc, resected at the moment and is hopfully getting approved for the ipi/nivo 2 arm blind trial in the next 2 weeks.  We know he will get one or the other.  So I just want a roll call and Im going to print it out for my husband whom has been emotional just to let him see the hope I see daily looking at this forum! 

List: 

Diagnoses date 

Stage 

How long NED 

What treatment used 

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We met with the melanoma specialist yesterday.  My husband has ctage lllc resected with surgery almost 4 weeks ago.  Our dr is doing the clinical trial of nivolumab vs yervoy, 2 arm study.  Not sure which drug my husband will get.  He said this trial just started to see how it works for stage lllc.  Originally, our oncologist offered radiation and interferon and then refered to the melanoma specialist at Baylow Sammons texas oncology dallas.  After speaking with the melanoma onc yesterday, he felt interferon would not be best option and radiation would not either plu he could not perticipate in the trial if he took radiation.  The clinical trial drugs are approed by FDA for stage 4 melanoma and he said they are working on other forms of cancer as well.  Dr feels he will meet all criteria to enter trial and he signed all contract papers yesterday.  I hope this was a good choice, we are young with 2 children.  My husband works in the sun and uses sun screen but now, after being at his job for 6 years he feels he needs a job chnage in the midst of all this, im afraid for him to get a new job knowing he will start treatment soon and what boss would put up with that from a new employee.  His work is working with him now very well and all they want is him to be healed, and we hope maybe they will try to get him on other equipment in a cab to keep him out of the sun, they have worked well with keeping him out of as much sun as possible.  I feel we have a lot on our plate as all you you do on this forum.  Lastnight my husband started crying that he did't want to die.  I know you all fear that, I have hope though from reading this forum seeing all you stage 4 and 2, 5 and plus years NED.  I really need to keep talking him into getting on this forum because it has given me hope.  Any advice is much needed.  Have you been on these drugs?  What stage where you then, how long have you been NED?    

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Speedster's picture
Replies 3
Last reply 4/15/2015 - 12:53am
Replies by: Speedster, Aundrea

Have an ideas for support here in Austin as I'm just getting strarted having be diagnosed in January.  I am tying to naviagte the emotional side of things as I make the turn toward a clinical trial in Dallas at Baylor Sammons.  I'm Stage IIIc.  Ugh.

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Chris in Minnesota's picture
Replies 7
Last reply 4/15/2015 - 12:04am
Replies by: Chris in Minnesota, Toby0987, Bubbles, Anonymous

Here is a quick story of my melanoma.  I had a 8cm tumor in my left axilla that was unresectable due to it involving a major vein. My melanoma oncologist then started chemo that included avastin, abraxane, and carboplatin in hopes to shrink it enough to shrink off the vein and surgically remove it.  It worked and within 4 months of starting chemo I was being operated on.  They did a CLND of my left axilla. They removed the mass and the pathology of the mass showed no viable tumor but "many" of the 21 lymph nodes showing "treatment effect".  The doctor said that meant it appears that many were once infected with melanoma but the chemo showed a complete response.  That surgery was in August 2013.  In October 2015 I had a round of radiation in that area and have been on GM-CSF ever since then.  I have been having clean scans since as well.  My question is this.  Has anyone very had a "complete response" with traditional chemo like this and did they ever have a recurrence?   I have my scans coming up next weeks and am a little worried this time as I've had a cough for the last couple months that won't go away

thanks

Chris

 

 

 

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StephyD83's picture
Replies 4
Last reply 4/14/2015 - 7:52pm
Replies by: Janner, SABKLYN, Toby0987, arthur

Hi All-

I just noticed a small light brown spot like a freckle (I do not have freckles) appear on my excision scar. Could it just really be a freckle or could it be a recurreance? I currently have only 5mm insuffienct margins on a Stage 1a .4 mm thick on my forehead. What are your thoughts??

 

Thanks!

Stephanie

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ashlee12's picture
Replies 8
Last reply 4/14/2015 - 6:49pm

I have a mole that I have had all my life... Well every since I can remember .. It's a medium brown and it's defiantly smaller then a pencil eraser.. Well I noticed sometimes when I itch my arm after I itch it it turns into a bump... Obviously I'm freaking out ... The bump then goes away after some time

 

 

 

im terrified its bad .... And I don't wanna Google.... Any thoughts

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Melissag0624's picture
Replies 5
Last reply 4/14/2015 - 1:51pm

In the news this morning my personal doctor, Robert Andtbacka, who's is a leading melanoma specialist at the Huntsman cancer institute announced that they are one step closer to finding a cure by injecting lesions known to have melanoma with a mutilated form of the cold and herpes virus. The point of this injection is to activate the body's immune system to fight the melanoma and also to teach your body that the melanoma cells are bad and require fighting. They are still very early in the trails but patients who have had very advanced melanoma are having great results and even being deemed cancer free! They are still doing clinical trials, I don't know the specifics and what candidates they are looking for but your questions can be answered by calling his office at 1-801-585-0303. Keep on fighting!

Love, Melissa stage 3b, biochemo in 2013, year 3, primary left upper shoulder with lymph node involvement.

<3 Melissa

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/14/2015 - 1:49pm
Replies by: magnus31, tschmith

research has found that people with vitiligo have a certain blood protein that offers them some protection against melanoma?

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Replies by: Marianne quinn, Squash, Anonymous

Hi I was diagnosed in 2013 with stage 3b melanoma that started in my forearm and then blossomed into a 3.3 cm tumor in right armpit.  Mitotic rate was 4. I was whacked and hacked by dr Jacobs at mayo in Rochester mn. I turned down interferon and radiation and just did the surgery.  All the pets have shown a 2cm spot on liver with abnormal uptake and a small spot on my thyroid with abnormal uptake.  Dr McWilliams said not to worry and just to watch it.  They just did another pet and he ordered a fine needle biopsy of my thyroid and it was positive for papillary thyroid cancer.  Sounds like no biggie so I'm going to have alcohol ablation and hopefully that will kill the ptc so I can keep my thyroid.  My question is:  should I request a fine needle biopsy of my liver?  Also would you have them hack  out your thyroid or just alcohol injections.  Kind of makes me nervous about the liver since we waited on the thyroid and only after a fnb do we find out its cancer.  What do you think?

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arthur's picture
Replies 10
Last reply 4/13/2015 - 7:45pm

I posted here about a year and a half ago debating whether or not to take Interferon-Alfa or ipilimumab as an adjuvant therapy and ended up taking Interferon although not necessarily by choice as there were issues with the insurance and Interferon presented itself as the more financially viable option. 

I completed the yearlong regiment of Interferon in September and unfortunately a few weeks ago had a recurrence; one tumor in my lower back, one in my shoulder and three on my brain. My initial diagnosis was Stage 3B Nodular Melanoma so we knew recurrence was a strong possibility although this was much more extreme than I had been anticipating. I've underwent radiation of the brain, back and right shoulder, 10 treatments for each area and my oncologist(s) seem (somewhat) optimistic as they've indicated the tumors are (relatively) small. I can't help but think though that the metastasis is very bad for my long-term prognosis however, but I remain pretty positive. For the record, the initial melanoma was in my right shoulder, 6.5 mm thick, ulcerated and had micro metastasis in 1 of 19 lymph nodes removed from surgery.

Anyways I'm currently seeking several opinions from my oncologist and melanoma experts from UW-Madison and the University of Chicago on what my next treatment plan and ipilimumab once again has come up as what my next likely course of treatment will be now that radiation is complete.

My question is for those of you that have taken it how did you handle it? I know everyone responds differently I'm just looking for personal experiences.

I'm 24 and in good shape and health (except for the cancer of course) and plan on graduating university in December. I mention this because the first month of Interferon was absolutely debilitating and forced me to miss one semester already and obviously would like to avoid that happening again (luckily summer is around the corner).

Any experiences you have like how you felt, side effects, how long you were on it, etc. would be greatly appreciated. I've read nearly every article/fact sheet I can about ipilimumab, but I find hearing personal experiences from people on it to be more beneficial than a cookie-cutter list of side-effects you see online.

Thanks.

 

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Jubes's picture
Replies 10
Last reply 4/13/2015 - 4:48pm

Does anybody else on keytruda have terrible mech back and shoulder muscle pain? Thanks

anne-Louise 

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flaglerjoe's picture
Replies 6
Last reply 4/13/2015 - 4:38pm

After a trip to see a new dermatologist after having a bad experience with another, I was diagnosed with stage 1b melanoma. Today I found out that the tumor removed during the WLE was actually 1.96mm rather than the 0.55 indicated by the punch biopsy. The initial shave biopsy indicated an atypical mole and the punch biopsy showed melanoma 0.55 mm, probably nodular with a mitotic rate of 2. The surgeon did not feel the SLN biopsy was warranted as it was thought to be smaller than 0.75 mm. Hidsight is definitely 20/20 on this one.

Now, I am headed back for a SLN biopsy ASAP. If something is found, I would like to look for an actual melanoma specialist. Does anyone have any recommendations for someone living in Florida? I am young and have two young kids so I want to make sure I get the best possible care if anything further is needed. Other good places to read and learn?

 

thanks!

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Replies by: Jubes, Ed Williams

My Mom had MRI scans of her brain taken last week and the results were great. Nothing new to report and while they are watching 2 with edema it all still looks great.  She has been driving since January, take a vacation for her 79th birthday to the Bahamas' and is looking forward to visiting my Nephew in Sweeten this summer.  So, all is great on her end thanks to the doctors at USC. 

-- 1 week shy of the 1 year anniversary of her last gamma knife treatment for 17 new brain mets. - 8 treated in Dec of 2013.

-- The tumors in her trunk (originally 6) have done nothing but shrink or disappear. So, we are keeping our fingers crossed that the next appointment in May to her oncologist will show the same.   

I wish everyone had these results today, but they will one day. 

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rmclean306's picture
Replies 3
Last reply 4/13/2015 - 7:49am
Replies by: Marianne quinn, casagrayson, Anonymous

My doctor just told me that he suspects subungual melanoma on my left thumb. I go to a dermatologist next week. It's scary to think about. How do you post a picture for others to see?

 

Robyn

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