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.

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Replies by: arthurjedi007, JustMeInCA, Anonymous, Nell, Bubbles, DZnDef

I have about a 10 x 9 cm tumor in my left shoulder and about the size of a small fist  in my left collar. Kind of looks like a hunchback mass of tissue pressing my left shoulder down a couple inches lower than it should. Keytruda  has helped slow down it's growth but is not enough. Also measuring with a tape measure it has increased 50% since my last scan in early November. From 4 x 4.5 inches to 6 x 6.5 inches. So I think the keytruda is losing the fight at least with this tumor.

My radiation doc has been ready to treat it for three weeks. It would be 45 gray in 15 treatments. He will not do a higher dose because of all the nerves I could end up with a dead arm. He believes the radiation would end the pain, probably return a lot of mobility to the arm. However he's not sure it would decrease the size of the tumor by any significant amount. He's at Saint Louis at Missouri Baptist. Also my Mayo medical onc believes this is what I should do because radiation has worked for me in the past.

My Saint Louis medical onc believes I should do surgery. It has taken three weeks and I should finally hear from his nurse what the surgeon says he can do. At best my medical onc believes the surgeon can remove as much of the tumors that can be safely removed without putting me in jeopardy. At worse they can only remove a small sample. But it is the surgeon who will really have to say. I also suspect it will probably be another three weeks before I can talk to the surgeon and they are fairly ready to start because it seems to take Siteman a long time to get things done. Not saying they are bad it just takes way longer than Missouri Baptist or Mayo which are the only other places I've had things done. I wouldn't be in such a hurry except the choking sensation I'm getting I think from the collar tumor seems to be getting worse fast.

Anyway I have my Mayo medical onc saying radiation and my Saint Louis medical onc saying surgery. I've had radiation four times and all have done me good. Except for a minor surgery to take out a couple Squamish stuff the zelboraf caused I've not had surgery.

Im at a loss of which doc to listen to. Any thoughts?

Artie

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democat's picture
Replies 16
Last reply 1/13/2015 - 1:38pm

I just need to vent.  I just went in for my semi-annual CT scan and was told it would be 4-7 days before I get my results. That's a lot of extra stress. Is a 4-7 day wait out of the ordinary?

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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As you all may know I am about to have my melanoma removed and skin graft also the sentinel node will be done all at once.. I was told I was going to have a drain in after the node biopsy.. How long did you have yours in for? Or do you know how long? Sorry just super nervous I've never had any surgeries before .. This is my first one ever.. Thanks to the melanoma :( thanks for your support everyone 

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New research unveils drivers for early resistance against this combo:

http://www.nature.com/ncomms/2014/141215/ncomms6712/pdf/ncomms6712.pdf

 

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Ksprin's picture
Replies 2
Last reply 1/13/2015 - 4:43am
Replies by: JustMeInCA, Wader

Hello! I'm new and my names is Krysti. Can anyone recommend melanoma specialist in the Bay Area? Thanks!

Krysti flynn 

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Twistermom3's picture
Replies 1
Last reply 1/12/2015 - 4:53pm
Replies by: Julie in SoCal

I had my first check-up after a WLE in October on my back for an in situ melanoma and full body check. The dermatologist described the scar on my back as keloid. It is irritated. The MD suggested steroid injections and I declined. The thought of annoying the scar more made me shudder. The scar is slightly raised . Has anyone done this for a scar?

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milerstar1's picture
Replies 6
Last reply 1/12/2015 - 1:42pm

After 8 mos of being NED just had scan come back with multiple lesions on liver and lymph nodes in area also affected.  Was originally diagnosed in Aug 2011, did a year of interferon after left side ALND. In May 2014 it showed up in right side axillary node, so had complete ALND on that side as well.  Am pending MRI of brain to rule that out and PET scan next week to determine total presence.  Consulted with my own doc, a doc at KU med and Mayo and all 3 say combo therapy BRAF inhibitor and MEK inhibitor.  Was not given good prognosis if this doesn't work.  PLEASE, would like any input, suggestions possible from similar cases.  I have 3 kids and a wife at home.

"Do not fear or be dismayed for the Lord your God is with you always." - Jos 1:9

"To Give Anything Less Than Your Best is to Sacrifice the Gift" - Steve Prefontaine

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Replies by: Anonymous

You 0 and now the rock Newman show folks welcome back this is our last our today September the seventh from busboys poor slice and use Rome my guest in this hour doctor john Ellis %ah you heard me say before to edge up professor the University of the Pennsylvania School of Medicine Department of Anesthesiology dynasty the logy and critical care of Harvard University graduate of Harvard University we affectionately called the White House we Cleanse EFX don't call howardto the black harbor which I stock john tells weapons welcome tithe rock dude so rocket is a pleasure to be here to pleasure to be a BC I have three sisters who live here 10from graduated from up Howard University man who remembers you with an RA from back in the day okay but you can't go back that far picket um uncles ones extended family I grew up in New York upcoming all my life many wonderful love family meetings anddinners here in busboys & poets with pleasure to be here great to have you arm thesis your story is a is truly a fascinating story there's much to talk we have we have an our body goes by terribly fast ohm so I want to get into really many things up part what I'd like to do is um is to get into love your background inters of arm you re: person today that has an incredible message you by example in a whole lot to folks talk the talk but docs John Ellis hashes walked the walk at one point let me ask you what was your highest week my house where it was $3.37 337 a6-foot-2 62 okay so 337 and we'll talk a littleabout BMI that's.

http://www.xfacts.com/cleanse-efx-review/

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AshleyS's picture
Replies 3
Last reply 1/12/2015 - 9:52am
Replies by: jbronicki, ncdaniel, JoshF

I'd appreciate advice for a melanoma specialist from MD Anderson.  I'm going there for a second opinion. Thanks!

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BrianP's picture
Replies 3
Last reply 1/12/2015 - 5:32am

Some of you may remember I attended a patient forum back in October in Chicago and I posted about it here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/immunotherapy-patient-forum

 

The videos from that forum are finally available for viewing here. I think they became available last month but I was just made aware of it.

http://curemelanoma.org/about-melanoma/patient-eng/patient-forum-videos/

 

I thought all the presentations were pretty good. One in particular I would recommend for someone looking for a feel-good hopeful story is the presentation by Rusty Cline. He's a survivor with an amazing story.

Brian

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Tracey R62's picture
Replies 5
Last reply 1/11/2015 - 10:33pm

Question on gene mutations and treatment. What would you believe to be the best treatment for melanoma if one DOESN'T have BRAF or a CKIT mutation or the other more common one?

Iam going in for surgery to remove my toe and my left groin lymph nodes Tuesday and just weighing my treatment options.  Sorry I don't have any more information, I am waiting on the actual report to be emailed then having the medical oncologist interpet it.  I just wanted some patient feedback.  Thank you.

Tracey R62

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Question on surgical margins. Since I'm most likely looking at recurrence in right cheek, the head & neck surgeon conferred with my medical oncologist on margins and have decided they will go with 1cm. I had asked her to consult with surgical oncologistwhi specialized in melanoma I consulted with in past and he feels that's unecessary. Couple of things he said:

1) Suture Granuloma is possible or other odd looking tissue that formed nodule. If that's the case, aggressive surgery planned is not necessary.

2) Even is it is recurrence taking 1cm won't change prognostic factors as much as more metastasis would or recurrence in lungs etc...

He said he would do surgery if I want but have to wait until 21st and said surgery Tuesday is an emergency...my choice. This puts wrinkle into everything...I trust all my doctors and asked them to discuss the surgical plan and next steps which I hope will happen tomorrow so I can decide whether to go in Tuesday for surgery with ENT or do consult with sugical onc with surgery following week.

Anyone have similar experiences? What did/would you do?

Also anyone out there who reads this have a suture granuloma? Was it painful? Was it nodular?

Or nodular lump by scar that looked odd on CT/MRI and it turned out to be benign? 

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 7
Last reply 1/11/2015 - 1:55pm

My husband had great n.e.d. scans after dabra/mek treatment for a recurrence at the surgical site of melanoma. Then a serious side effect caused him to have to stop using it an he switched to IPI.  Now three weeks after first IPI treatment, there is a lump growing again. They said we have to keep using IPI and wait to see if the lump changes.  Cancer sites state things like people with local recurrences like this after surgery have lower survival rates. How the heck is anybody expected to live with this stress? It's driving us nuts.  We don't know if we have hope or not. Thanks for listening. Just venting.

Rose

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Anonymous's picture
Replies 4
Last reply 1/11/2015 - 12:10pm

I was first diagnosed with melanoma Stage 1b in 2004 (Breslow 0.44 mm, but had few mitoses, so was restaged from 1a to 1b when the new classification came in) treated with WLE. About a month ago, I started to have upper/middle back pain, which I thought was due to a poor posture. It was sort of migrating from between the shoulders to the sides, upper part of the back etc. It is tolerable, and I don't take any pain killers. I don't have a pain at night and hot shower provided some relief.

Because of my melanoma history, I am always hypersensitive to any pain and I saw the PCP for the piece of mind. She sent me for PT and upon my request/insistance to get an X-rays of thoracisc spine, which showed a compression fracture at T8 level. She now wants me to test for osteoporosis, but I am scared to death about a possibility of metastatic spread. I am 43 years old woman and how likely it could be osteoporotic fracture??? Well, I have certain risk factors: use of Mirena, low weight, lack of excersise, perodic use of high doses of proton pump inhibitors  (due to acidic reflux), maybe low Vit D... I pray that this is osteoporosis, but I am trying to understand what I have to do in a worse case scenario. I don't have an oncologist (I live in Boston) because I only saw a dermatologist all these years. How do you get strenght to go through Stage 4 treatment? I have 2 kids age 8 and 10 and I afraid that I will never see them grow up. Having Stage 4 diagnosis is like a death sentence to me. I'll appreciate any support and help. Thank you for listening.

 

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