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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DeniseK's picture
Replies 14
Last reply 9/21/2013 - 5:42pm

OK, so most of you know my story.   I get my 4th and final infusion of Yervoy day after tomorrow and I am taking Dabrafenib full dose.

Zelboraf quit working for me around the 6th month.  

Anyway, I know my melanoma is getting worse.  I can feel subq's on my neck and back that are new.  The sub q on my arm is getting pretty big and I am going to talk to my doctor about removing it due to pain.  I am not sure if I can have surgery while on the medication.  I can quit the Dab cuz it's not working anyway but what about Ipi?  

Also I don't think I have the time for Ipi to kick in.  I can feel my body getting weaker and my back and chest are hurting more and more.  I know I only have a short time.  So I haven't got an MRI yet to see if my brain is stable but I have a feeling it's not.  I'm really hoping I'm wrong but I am having dizzy spells and pains in my head.  My question is what is left for me if I can't get into the PD-1 trial?  I was thinking temodar or IL2?  Are there any other options?  Is IL2 the one you have to go to the hospital for?  Is it Interleukin combined with what?  I am completely scared at this point and need some help.

Thanks everyone

Denise

 

 

 

 

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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MattF's picture
Replies 5
Last reply 9/21/2013 - 3:44pm
Replies by: Anonymous, washoegal, JerryfromFauq, jeffjohn78, JoshF

Someone please help me out...maybe I am spoiled. I was being seen at MD Anderson for the last year.

I moved from TX back to CA in July. I have been at UCLA for 6 weeks now and have accomplished

a FNA showing Metastatic Stage III Melanoma Reoccurance

a PET/CT showing two Mets all in the neck keeoing it regional and Stage IIIB

now they tell me today my Surgery for Parotectomy, and lymph node dissection is set for 

OCT 28th 2013?????

 

I am going to meet with City of Hope Chief of Head and Neck Surgical Oncology on Tues. Am I crazy but is 12 weeks at UCLA to get a biopsy, a scan and a surgery seem like alot to anyone else. They literally don't set up anything and have zero follow through.

I got these things done in a 14 day period at MD Anderson.

Then to really make me want to seek different care, UCLA tells me I will need my family doctor to sign a physical stating i am healthy enough for surgery 1 week prior to my scheduled surgery or UCLA will cancel my surgery.

I never had to worry about seeing anyone else at MD Anderson...it was complete and comprehensive care. I am honestly praying City of Hope is like that also.

Anyone have thoughts or better yet experience with City Of Hope?

Matt

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sbrooks90's picture
Replies 5
Last reply 9/20/2013 - 9:01pm

Hi Guys,

Just wanted to get a sense of what treatment options are out there for Stage III (Besides IFN-a). I had my CLND last week and am waiting for the results on that so I can be properly staged. Has anyone had experience with radiation? My surgical oncologist said that is an option if 3 or more lymph nodes are positive. I know a lot of these treatments are in clinical trials but would like to see what other people have gone through. This board is full really smart individuals!

 

Thanks,

Samuel

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Scott B's picture
Replies 11
Last reply 9/20/2013 - 11:59am

Just found this site so I guess I'm what you call a newbie.  In 08 I was found to have Melanoma on wrist Clarks level 4. Had surgery to remove it, was told it was all removed. Jump frorwad to May of 2012. Routine yearly meeting with Onc. Swollen lympnodes in left elbow. Scans showed stage 4 melanoma. it  is more like where it isn't. Been on Zelboraf since Aug.  My Onc has been communicating .with a doctor at Md Andersen because latest scans showed tumors have shrunk in nearly  all spots but brain. The doctor at Md Andersen suggested using Zelboraf along with Temodar. I went to Denver Cancer Center Thurs.for second opinon. Dr. there said there are is no data to show that the combinations of the two drugs has shown to work. I'm confused why he feels that way yet Md Andersen said they use this combination often. It has many doctors confused because my brain tumors are not normal. Usually brain tumors are a large tumor or more, where as my brain tumnors looks like "specks of salt" many, many small ones all over. the brain. Question is is anybody or do you know somebody using this combo? Because of the volume of tumors on the brain radiation isn't an option. Just really wanting to know if anybody is using this combo and seeing good results. On a side note when I registered to join ths web site it said this registration was good for only 1 day, why?

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JoshF's picture
Replies 2
Last reply 9/19/2013 - 9:36pm
Replies by: JoshF, casagrayson

Hi All-

 

I'm anxiously awaiting pathology results from excisional biopsy I had on my right cheek Tuesday. There were some small lump under scar. Doc took out 2 masses one 7mm the other 4mm. He said he thought they were lymph nodes. I have seem many posts abput reoccurrence in parotid gland and lymph nodes in neck but not in cheek. Anyone have any insight or knowledge of this? Also are the lymph nodes big? The lump was movable and slightly tender when I would move it around but not painful. I just can't find much on this and I'm going crazy. Just keep getting bad feeling about this.

 

Josh

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

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Landslide45's picture
Replies 2
Last reply 9/19/2013 - 4:03pm

I have a side effect question for the group. My Dad (stage IV) has had mild neuropathy off and on since beginning interferon treatment last summer. He is now in a 3mg clinical trial of Ipilimumab, and this week (he is between his 2nd and 3rd doses) the neuropathy has gotten severe and made it very difficult for him to walk. He is having a brain MRI tomorrow but in the meantime we are anxious to know if folks have had similar experiences and how likely this might be a treatment side effect vs being tumor-related.

Anyone have any thoughts or advice? Anyone have tips on how to handle neuropathy symptoms?  Thanks in advance--this board has been a major source of hope and knowledge for our family as we try to fight this nasty disease!

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d0771's picture
Replies 8
Last reply 9/18/2013 - 9:40pm
Replies by: POW, d0771

I am new to this board, and have been reading it extensively for the last few days.  I was first diagnosed with melanoma this past Friday.  I am in the Dallas / Ft Worth area of Texas.

A brief history.  Approximately 9 months ago I went to my dermatologist due to an odd growth on my back.  While it  turned out to be benign, they decided to biopsy 2 other moles.  One came back benign, the other came back mild-mid atypical I believe.  I had a followup after 3 months, and this past monday was my six month follow up.  The doctor decide that one mole on my upper left back needed to come off,  I thought nothing of it at the time, and actually forgot about it until I got the call on Friday and was told that I had Melanoma in situ, and that I neeed to wider excision to check margins.  

After doing extensive reading, I do know that if you are going to have melanoma, in situ is the place to be.  Of course this has also made me much more paranoid about whether my diagnosis is correct, what I should be doing to "be my own advocate", which I read about often here, and just generally what questions I should be asking and what I should be doing.

These past exams were not full body exams, they only examined me with my shirt off.  Since my diagnoses, I have examined my entire body, and have found one spot on the back of my left leg that appears slightly suspicious to me.  Fairly symmetrical, not raised, a bit smaller than a pencil eraser tip (if I hold it over the mole it cannot be seen,but does have brown coloring variations, and just looks a little different form the rest.  

My wide excision is scheduled for Monday. Only odd thing about it is, due to scheduling of the office, my options were to schedule later in the week at my regular office, or go to their other office and have the procedure done tomorrow afternoon.  Is there any reason that I would need to make sure that the same person who did the original biopsy performs the follow up procedure?  

Aside from bringing up the other locations I find suspect at my appointment tomorrow, I am told that an appointment for a full body skin exam cannot be scheduled until the end of the month.  Should I be pushing for it earlier than that?  Should I be pushing for that to be done at my procedure tomorrow? (I am told they block out an hour)

I do not have my biopsy results, I was only given the news over the phone.  But as posted, I was told it is Melanoma in situ.  A question on this. Does this mean that during the biopsy, they were able to determine that there were clear borders around the biopsy itself?  So essentially I should already have clear margins(the entire melanoma was removed), but the wider excision is to further test / ensure that they got it all?

 

Thank you so much for reading my long post and any answers and guidance you can provide. 

 

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Rebecca and Bob's picture
Replies 9
Last reply 9/18/2013 - 5:04pm
Replies by: NYKaren, HopefulOne, JoshF, Rebecca and Bob, Anonymous, POW, sbrooks90

We had a scare today with scans. The doctors thought that a spot on my husband's spine might be melanoma so we had to do another scan MRI of the back to check it closer. It ended up being inflamation. We were so relieved words cannot even express it. My husband progressed to stage IV when our kids were 1 and 3 years old. Here we are 7 years later, 3 of those years spent working towards NED. This has been such an emotional roller coaster ride, but we are thankful each day that we have enjoyed and spent doing things with the kids and that he is here for them.

I just wanted to share some good news.

Rebecca

Believe

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Replies by: HopefulOne, Anonymous, POW, Tracy Chicago, JoshF

I'm 4 yrs NED from stage 3 melanoma (woot woot!) but now I'm experiencing similar problems that I had right before my stage 3 diagnosis (nausea and bad bowel movements after every time I eat). It's been going on for four days. Would you call your oncologist or your regular doctor? I'm feeling nervous about this!

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TSchulz's picture
Replies 3
Last reply 9/18/2013 - 4:51pm

Hello everyone, 

I have not been very active on this board the past several months and truly hope there is more positive than negative news flowing through the postings.  All the people who share here are heroes in my mind and helped me and my family through the darkest of times.  I'll be forever grateful.  

I wanted to share my most recent positive news - although a little old now.  My last trip to NIH in follow-up to my ACT/TIL treatment in May 2012 was the first week of August.  After the usual labs and scans the doctors, again, shared that my melanoma was not seen and I remain with no evidence of disease.  

Those words, have made life move forward again  for us - cautiously forward.  

All the very best to everyone out there dealing with this terrible disease and a special thank you to everyone who is enrolled in a clinical trial - it is because of us that there will, one day, be a solution to melanoma.  

Troy

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    We are the "MELANOMA PATIENTS INFORMATION PAGE" community.   The history of the MPIP predates the formation of the MRF.  The MPIP is a Memorial to Jeff Patterson and his wife's sister, Cindy.
     The MRF does a great job of fund raising and supporting research for the fight against melanoma.  The MPIP is not a fund raising entity, we are a group of fellow sufferer's trying to help each other on a personal, compassionate and informational level.  We need the MRF's help, and the fact that the MRF recently began supporting the MPIP should be a benefit in their fund-raising.  The first new format  seemed to have forgotten the personal approach of the MPIP and concentrated more on the commercial fund raising side of the MRF.  After complaints and requsts the MPIP history information was included in the MRF write up

        Cindy was diagnosed with melanoma approximately Nov 1995.  Jeff set out to find everything he could about this dreadful disease.  What he discovered was that there was a great deal of information available on the internet, but it took him hours and hours to find it. He decided to put everything he could find on one "page" so that Lori Paterson's family could access the information more easily.  Unfortunately Cindy passed away  in August, 1998.    Jeff's efforts continued. What now is known as the MPIP - complete with a bulletin: board and chat room - is the result of Jeff literally spending : thousands of hours writing computer programs and researching melanoma.   His labor, which has been helping tens of thousands of patients, caregivers and their friends worldwide, outgrew the ability of one person to support it properly and the MRF agreed to continue and enhance this fabulous site to assist patients on a personal level.

Jeff Patterson's MEMORIAL SHOULD NOT BE PUSHED ASIDE AND MADE TO APPEAR AS A TRIBUTE TO AN Astronaut's WIFE.   
     Jeff allowed others involved in the struggle against melanoma to use his site and continued the site at his own expense and time for many years to be a chat room and social room and information site for melanoma individuals.

Last year the MPIP history information was included in the MRF write up.  This was appreciated.  Now it has again been removed!  

                                                                                                         WHY?

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bkinman's picture
Replies 3
Last reply 9/18/2013 - 1:17pm

I thought it used to ask if you wanted to be notified, but it didn't ask, and I am not recieving notifications in my email.  I looked through my account and profile and didn't find anything. Anyone know

Sorry for non-melanoma question and thanks in advance.

Becky K

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JoshF's picture
Replies 10
Last reply 9/18/2013 - 12:15pm

HI All-

Some of you may have read my posts in the past. Please bear with me on this...I am very confused and appreciate all the support. I have finally been told that I am Stage 4. Confusing part....here we go....in April 2011 I had a bump removed from my right cheek that my derm thought was cyst. Well it mas melanoma and pathology said it was meatstatic melanoma. My derm was shocked to say the least as he has never noticed anything on my skin. He was concerned obviously but felt this was odd case.

I found a specialist and he did protocol of getting pathology slides and ordered WLE of cheek and SLNB. Surgey path came back with clear margins (diameter was 5.7mm) and SLNB was negative. He had felt intially that this wasn't metastatic but rare presentation with no epidermal component. I since have had numerous moles removed...a few dysplastic but mostly benign. I have had a chest/neck, abdomen/pelvis and brain MRI in Nov/Dec 2011....all negative, though there was a spot on liver where I had an MRI and it was determined to be a hemangioma. There was also a cyst in sinus area that was of no concern. I went to another specialist as I am not comfortable...and was told today that I am stage 4 since there was no epidermal component. Doc feels I'm low risk for recurrence but I will follow stage 4 treatment protocol without any immunotherapy/chemotherapy as I am about 8 months out for surgery and there is no benefit. The pathologist is ordering up unstained slides to do own testing. He also wants me to do annual eye exams and have a mucosal exam. I'm not sure about my prognosis and wonder if anyone out there has had a similar experience. Thanks.

 

Josh

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

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JoshF's picture
Replies 4
Last reply 9/18/2013 - 9:33am

Had re-excision of rt cheek today. Pulled 2 lesions suspected to be lymphnodes. Both pink & white in color. One was 7mm the other was 4mm. Waiting on biopsy results but given they were right under scar, it has to be melanoma. Guessing this would put me at Stage IIIC? Fun part is waiting to hear news....ugh!!

Josh

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

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lidiapeters's picture
Replies 4
Last reply 9/18/2013 - 1:08am

TISSUE SUBMITTED

1 shave/ excisional biopsy, right chest

GROSS DESCRIPTION

SCO one piece of shave/ excisional biopsy tissue from the right chest measuring 0.8 x 0.6 x 0.1cm

the specimen is trisected and all tissue embedded.

MICROSCOPIC DESCRIPTION

Multiple serial sections of the submitted skin biopsy sample have been examined. There is a somewhat asymmetrical 4 to 5 mm diameter melanocytic lesion in the center of the skin surface. Most of the S-100 protein positive nevus cells are seen in the dermis and there is associated marked lymphocytic infiltrate suggesting some degree of regression. A few junctional nests are noted. These are epithelloid cells with larger nuclei and nucleoli. Biopsy findings suggest the so called Spark's nevus (ie, nevus with features of Spitz nevus and Clarks nevus). Considering older age and histological atypia with some dermal nevus cells present at the dermal margin focally, conservative re-excision of the lesional area recommended.

DIAGNOSIS

SHAVE/EXCISIONAL BIOPSY, RIGHT CHEST; ATYPICAL SPITZ NEVUS; CONSERVATIVE RE-EXCISION OF LESIONAL AREA RECOMMENDED

 

 

 

Can anyone explain this?, All my dermatologist said is I do not have skin cancer, but said he saved my life?...mixed message?? and I am confused and scared and don't really understand my pathology report, anyone familiar with these finding? Any help I can get in understanding my pathology a little better would be much appreciated! 

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