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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BrianP's picture
Replies 9
Last reply 1/6/2014 - 9:39pm

I traveled down to Moffitt this past week to enter a MAGE vaccine trial for Stage IV NED patients.  Unfortunately due to some delays with pathology request the scans I had several weeks ago which indicated no disease are now not recent enough for the trial so I had to get rescanned.  The new scans showed evidence of disease so I had to come up with a new game plan.  I'm now looking to travel back down to Moffitt this upcoming week to enter the BMS Nivo/IPI combo trial.  There's been a lot of press on this new combo but surprisingly I haven't heard of many people on this forum enrolled in the trial.  Would love to hear from someone on the trial if they could share their experinences so far.  Thanks!

Brian

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/6/2014 - 10:33pm
Replies by: POW, BrianP

My 34 year son was diagnosed two years ago

large mole on torso surgically removed with lymph nodes under arm, one of 12 nodes infected

radiation for 6 weeks then 12 months of interferon

july 2013 MRI showed small brain lesion and 3 new tumors on torso and back

radiation of total brain for 4 weeks plus 1 mega boost to exact spot

12 weeks of yervoy

good news brain MRI showed lesion gone

bad news tumors on torso 2mm larger and also on liver and spleen and new tumor on thigh and side torso

next step clinical trial - dr Laos at u of m has already closed his trial so have been recommended us to karmonas cancer at Wayne state

waiting now for appt date

Pat

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Pink's picture
Replies 3
Last reply 1/6/2014 - 10:40pm
Replies by: Bubbles, Pink

tomorriow going for another brain scan then Wed. meet with radiologist and neurp at Moffit. Initial MRI showed 3 small mets to brain. i am also going to start Ipi as soon as insurance approves it. if SRS does not work can they do it again  and does IPI cross the blood brain barrier.

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mwcollins's picture
Replies 18
Last reply 1/7/2014 - 7:26am

Hi all-

After reading many posts and with encouragement from my husband, I have finally decided to register on this website, and participate.  My husband is very active on this site, so here is my story.  My husband was origionally diagnosed in February of 2011.  At the time we were living a normal life. I was (and still am) a stay home mommy to 3 boys and 2 dogs.  The initial diagnosis scared the crap out of both of us, but surgery seemed to take care of it. We moved to North Carolina from upstate NY to try to fix the financial pitfall we were in, but a month and a half after moving, melanoma reared its ugly head again.  This time it had moved to a secondary lymph node.  Primary lymph nodes were clear and the PET scan was also clear other than the one tumor.  Here we are another 15 months later, and routine CT scans showed a thickness in the small bowel.  I brought up the idea of my husbands diverticulitis as being a possible cause.  I try to consider myself a silver lining type person, but I have to admit I am scared.  I have 3 wonderful boys all at ages that desparately needing their daddy.  Our oldest is 12 and quickly becoming a young man who needs his dad to help mold him. Our middle son is 11 and wants nothing more than to learn how to be a better athlete from his dad (my husband was a tri-sport athelete), and our little guy is 4 who wants nothing more than to use his daddy as his jungle gym. I try so hard to be the voice of optimism.  My husbands family has a long line of cancer (breast, colon, tongue and neck), but all survivors. I want to belive that my husband is going to be another one of the line to be a survivor, but there is a small part of me that is just so scared that our luck is running out.  We have talked about the "worst case", and I would probably move back to NY to be with family especially since I have the ability to obtain a job if I return (I haven't worked aside from being mommy since my oldest was born).  I DO NOT want to have to return to NY, but feel comforted to have the safety net.  More importantly, I just can't imagine living life without my husband.  We met in 1994, and married in 1998.  We have had a very typical marriage with it's ups and downs, but despite being together for almost 20 years, it just doesn't seem long enough!  I guess, I just wanted to introduce myself to the forum, and get some support.  I have read such amazing stories on this site, and am hoping to lean on many of you as I go through the roller coaster ride that is melanoma.  Not many people out there understand this life that we all live and I just want to say how glad I am to have the support.  I look forward to posting more and supporting y'all.

 

Megan

 

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mikvahnrose's picture
Replies 1
Last reply 1/7/2014 - 9:39am
Replies by: Janner

I got a shave biopsy of a suspicious mole about a month ago. December 2nd

The results came back that it was a Benign Compound Melanocytic Nevus. Read by a dermatopathologist so it makes me feel more confortable that it is not cancerous.

Well i now know that the mole wasnt cancerous, but within a month it has reappeared!!! Not the same size as it was before, it's smaller, but it came back. Is that normal?? Is that a concern that i should get it checked out again?

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Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.

Thanks.

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Anonymous's picture
Replies 14
Last reply 1/7/2014 - 9:01pm
Replies by: Anonymous, Vermont_Donna, jmmm, POW

Ok, need help.  This is really confusing.  My husband is planning on starting short term disability from work on Monday.  His job is NOT protected by the FMLA.  We have to get the paperwork filled out by the doctor and are not quite sure of the best answers.  We were thinking that it would be best to say unknown about returning back to work, so that he could get his 12 weeks pay and maybe they will pay the health insurance premium instead of making us pay COBRA right away.  He would also like to keep his job if possible, just in case of a miracle.

But, then on the otherhand I heard that you should apply for SSDI right away, even if you are on short term disability.  How can you say that you might return to your job on one form and then a week later fill out another that says you are permanantly disabled? 

Also, it's quite possible that they will just lay him off during the 12 week short term period right?  Has that happened to anyone?  Then what happens?  Can they take away your long term disability plan that you paid for when you were employed now that you are no longer an employee?

Do you ever just get to skip short term disability and go straight to long term disability? I'm not talking SSDI, but Unum Long Term Disability? There seems to be some protection there.  It would help him with keeping his life insurance too, then he could get a premium of waiver and it wouldn't matter about not having the job to keep the benefits.  He paid for the life insurance, but it's through the company with Unum. If you could just skip the short term disability that would seem safest.  Everything is though Unum and work.  We don't really trust anyone and no attorneys around here know the answers. 

The best idea seems to be get approved for short term disability, apply for SSDI, then get approved by Unum for LTD and get a premium of waiver. Plus do all this before you may get laid off/fired or whatever.  Am I on the right track?

Sorry, this is a head full.  What can I say my head is full!  Not even sure if I made much sense.

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Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.

Thanks.

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Anonymous's picture
Replies 10
Last reply 1/9/2014 - 12:31am

hi ... i'm a Danish guy looking to enter a Bristol Myers Sqiubb phase 3 trial of ipilumimab and/or nivolumab and I was wondering if anyone else in this forum is participating in this trial already and what your observations have been so far - both in terms of tumor effects as well as side effects ... looking forward to your comments !

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Replies by: Mat, aldakota22

I am so proud to be in this trial, for three years now. We must remember those first brave ones, who died from BRAF alone, and the courageous Dr. Flaherty and his crew, and the FDA itself, which allowed MEK inhibitors to be given at the same time. They saved my life and so many others, and those to come. I am just overwhelmed with gratitude.

The history of the world is the battle between superstition and intelligence.

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Anonymous's picture
Replies 1
Last reply 1/9/2014 - 8:49am
Replies by: Tina D

Ok ladies, kind of an akward question here and it may be that no one has any answers or ideas, but here goes:

I started the BRAF/MEK combo about a month ago and have been on birth control pills for over a decade. Before starting I was told (by about 6 different doctors, nurses and pharmacists) that the new medications would make my birth control less effective and it was imperative that I use a barrier method as backup. OK. Fine.

I started the new meds about the same time as I started a new pack of birth control. I had some minor spotting mid way through the pack which I attributed to the "less effectiveness" but no other issues. Anyone who's ever been on birth control knows one of the perks is very predictable reliable menstuations. I was supposed to have my menstual period this past week and... nada. I've had nothing. I started a new pack this weekend, but I've never not had a period in the almost 20 years I've been on these pills. For those of you thinking I might be pregnant- unless it's an immaculate conception I'm not... trust me. I know exactly how long it's been and if I'm pregnant it's either because some magical baby fairy managed to outsmart biology, or the government is doing more than reading people's e-mails. 

Not sure if anyone out there has had any kind of experience with these drugs and birth control pills, but I thought I'd put it out there just in case.

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Hstevens0072's picture
Replies 8
Last reply 1/9/2014 - 8:50am

I don't usually post but I do read the board.  I want to let you know that I am in the MK 3475 PD1 clinical trial and just had my third set of scans at the end of December.  I am very fortunate, my largest tumor is 82% smaller and the others have resolved.  No new disease.  I haven't had any trouble with side effects.

i know many people read these posts looking for hope so I wanted to share.

Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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sFELDMAN's picture
Replies 5
Last reply 1/9/2014 - 10:15am
Replies by: Pink, Tina D, BrianP, Mat, SABKLYN

Hi everyone. I am in  immediate need and hope you can help me. I am in immediate need of a PD 1 trial. Does anybody know where any of them are being held I live in Florida but am willing to go and travel anywhere.    I have previously been on Braf/Mek  16 months did well,  then Yervoy....slowed it down but need pD1.   Thanks to all my fellow warriors for your help.  G-D bless

 

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Bob B.'s picture
Replies 3
Last reply 1/9/2014 - 11:25am
Replies by: lsmith - MRF, Anonymous, BrianP

it's been awhile since I visited.   The site has changed.

 

How do I "search" a previous Topic?

 

Thanks!

 

Bob B.

The Only Good Legend is a Dead Legend.

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Anonymous's picture
Replies 7
Last reply 1/9/2014 - 12:14pm
Replies by: POW, Anonymous, Kim K, Momrn5
When Is a Completion ALND Necessary in the Presence of a Positive Sentinel Node?

 

Eur. J. Cancer 2013 Dec 10;[EPub Ahead of Print], A Suyoi, SK Bains, A Kothari, M Douek, O Agbaje, H Hamed, I Fentiman, S Pinder, AD Purushotham

Research · January 02, 2014
 
 

TAKE-HOME MESSAGE

  • This retrospective study from the UK examined 155 patients undergoing completion ALND after positive sentinel lymph node biopsy. Patients with macrometastasis (> 2 mm) in the sentinel node had a 35% likelihood of further axillary disease on completion surgery vs a 10% likelihood in those with micrometastasis (< 2 mm).
  • The authors suggest that this adds further evidence supporting the avoidance of completion ALND in patients with micrometastases.

- Richard Bambury, MD

ABSTRACT

Background

The management of the axilla in the presence of positive sentinel lymph node (SLN) remains controversial. Many centres forgo completion axillary lymph node dissection (cALND) in the presence of micrometastatic disease. The American College of Surgeons Oncology Group (ACOSOG) Z0011 trialists argue for extending this to macrometastasis. The aim of this study was to correlate tumour burden in SLNs with that in the residual lymph node basin to determine the likelihood of residual disease in patients with micro- and macrometastasis in the SLN.

Methods

Patients who underwent cALND following a positive SLN were analysed for histopathological features of the primary tumour and burden of axillary disease.

Results

Of 155 patients, 115 (74%) had macrometastases and 40 (26%) micrometastases in the SLNs. Residual axillary disease was detected in 55/155 (35%) patients with macrometastases and 4/40 (10%) with micrometastases. Generally, with increasing size of metastasis in the SLN there was an increasing risk of further disease in residual lymph nodes. Logistic regression analysis showed increased odds ratios for further disease for all groups when compared with the <2 mm (micrometastasis) SLN group.

Conclusion

Patients may be advised to forgo cALND where the SLN contains isolated tumour cells or micrometastasis. Recommendations for proceeding to cALND can be based on the size of metastasis in the SLN, which relates to the risk of further disease in the residual axillary lymph nodes and subsequent regional recurrence.

European Journal of Cancer
When Is a Completion Axillary Lymph Node Dissection Necessary in the Presence of a Positive Sentinel Lymph Node?
Eur. J. Cancer 2013 Dec 10;[EPub Ahead of Print], A Suyoi, SK Bains, A Kothari, M Douek, O Agbaje, H Hamed, I Fentiman, S Pinder, AD Purushotham

 

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