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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sbrooks90's picture
Replies 2
Last reply 9/23/2013 - 7:58am
Replies by: POW, blden2186

Hello Everyone,

I received a strange email today from someone on the MPIP board asking me... since I was a stage III patient to do a 40 min phone survey for money (that it would help other patients etc etc). Just wondering if this is real or not and has anyone had experience with this before? I am very skeptical

Thanks,

Samuel

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For stage 4 melanoma with nodules in the lung, oncologists are giving the choice of interleukin 2 or PD1. What are the differences between these two options?
IgorPuzanovMD (Physician - Oncology (Verified) ) - 06 / 05 / 2013


http://talkabouthealth.com/for-stage-4-melanoma-with-nodules-in-the-lung...

HD-IL2, is FDA approved since 1992, is a taxing therapy delivered best in specialized centers of excellence as inpatient intravenous therapy (5 days in hospital, 9 days recovery at home, 5 days in hospital) which was shown to cure 5-8% of patients and help stabilize or shrink disease in additional 20-25% (usually for 7-24 months).

PD-1 therapies are very recent, but with exciting potential to be delivered on outpatient basis, in a vein, every 2-3 weeks and with objective substantial shrinkage in 20-50% of patients. Long term results from Dr. Sznol reported at ASCO 2013 suggest durability of these responses for 24 months. However, it is not yet clear if the long term cures will be observed at the same (or better/worse) rate than with IL-2.

Currently, I encourage patients to enroll on PD1 or PDL1 trials when available as HD IL-2 can be given as standard of care after that therapy. Some patients unfortunately will not be healthy enough to get IL-2 after PD1. If that is a major concern, HD IL-2 can be given first. However, some PD 1 trials will not allow prior HD IL-2 or may close by the time progression after IL-2 develops.

It is a decision best made with your treating physician.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Replies 7
Last reply 9/22/2013 - 2:11pm
Replies by: Anonymous, POW, Janner

Hi,

I am a senior citizen and get confused when it comes to computer things.

With the old website you could go to the profile page of the MPIP member and you were able to email the member using the website form.

I have looked on the profile pages and I cannot determine how I can send a "private" message to the member.

Please tell me how to contact MPIP members via their profile page or any other way.

Thank You

Josie

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Momrn5's picture
Replies 15
Last reply 9/22/2013 - 10:52am

SLN Positive. Brings me to stage 3. I guess I am in a fight for my life after never being sick a day. I have been reading this site since my biopsy. Have learned a lot about melanoma from all of you but I don't want to be here. If you get my drift. Appt. next week with surgical onc. to discuss CLND. What is out there for stage 3? Is it ever curable? Or are we always just waiting? Still have to tell the kids. Don't know if I will be able to keep it together.

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eddiealmost's picture
Replies 8
Last reply 9/22/2013 - 5:34am
Replies by: eddiealmost, Janner

I have dysplastic nevi syndrome with 100's if moles, at least 15 moderate dysplastic, and 2 recent severe dysplastic.

My derm used a scalpel to dee a very deep cutting of the severe dysplastic mole, not a complete excision. She went very deep!!! There was no brown skin left (I am white) and the removed lesion had a lot of normal looking skin attached to it.

The margins came back as not clear and the derm did a wide complete excision down to the muscle.

The severe dysplastic mole was growing down into the skin, not staying on the surface.

Can moles grow vertically and still be benign??? Does this also mean that th atypical cells can grow in I pigmented cells??

I am glad that it was not a melanoma, but am concerned that hey might have made a mistake considering how deep it grew.

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My husband was in the clincial trial interferon vs. ipi.  He was able to get all four induction infusions.  About 10 days after his fourth infusion, he developed colitis from the ipi.  That landed him in the hospital for five days.  Last Friday, 25 days post ipi, he was hospitalized again for hepatoxicity.  His liver numbers are still up.  So far, this hospital stay is day seven and he is still inpatient.

He had CT scans on 2/24/12.  Those results have come back.  He now has spots on his spine and right pelvis.  They did a bone biopsy Tuesday on the right pelvis. We are still awaiting those results.

His oncologist is not recommending any further immunotherapy due to the reaction he has encountered with the ipi.  If the biopsy shows melanoma, (which I will be shocked if its not) she is saying chemotherapy.

In your experience, what drugs are we likely to see chemotherapy wise?

If it is melanoma again, that will move him to Stage 4 from Stage 3b.

I need your help to know what our next step is or should be.

We don't know how strong we are until being strong is the only choice we have.

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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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