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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Jewel's picture
Replies 15
Last reply 9/28/2011 - 8:38pm

 Hi there,

My husband has been recuperating from a ELND and Skin graft with WLE, while he has been doing well with recovery we are now faced with alot of decisions which I have seen alot of you wonderful people have to make.

We will be going to Sloan Kettering for a 2nd opinion and to hear what they might have to offer. We have done nothing other then surgeries.

My husband is a firm believer in keeping his body and his mind strong....putting all these chemicals in his body when he is showing NED at the moment is hard for him to swallow.

I would appreciate hearing from all you survivors who have had positive nodes and what personal choices you made for yourself. I know everyone responds different and melanoma grows differently in all of us.

Scared and Confused, even though I would never let my husband know that. He has been amazing through all of this.

Thank you,

Jewel

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Gene_S's picture
Replies 4
Last reply 9/28/2011 - 8:22pm

My husband is going for his 30 week scans on Friday and we are praying for more regression or better yet NED.  Will update when we get the results on Friday.

Judy (loving wife and caregiver of Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Replies by: dearfoam, KatyWI, kylez, benp, mombase

Our Medical Oncologist called today to discuss setting up with the neurosurgeon for a biopsy of Dad's brain tumors. There are a few to choose from, and he says the recovery is better than with the other options (spleen tumor would risk too much bleeding and require a resection/ week+ recovery in hopsital). The point is to send sample off for the BRAF test as the other sample was insufficient.

Just wondering how that has gone for other people. I worry about dad having a crainiotomy just because he has had problems with other biopsies in the past. Back in April he ws in the hospital over a week when biopsy #1 gave him a lung collapse 3 days after, followed by several blood clot problems etc. Biopsy 2 was OK because they still had him in-house for the recovery. But he already has messed up judgement and reasoning; I worry if treatment goes really well, he will have brain damage (though maybe he already does to a degree) and not be able to practice law professionally again (which is all he wants to do).

However, we will all enjoy telling him he has a hole in his head! We do try to keep things light-hearted.

Thanks in advance for your thoughts and replies.

-DF

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mom3girlsFL's picture
Replies 3
Last reply 9/28/2011 - 5:27pm

PET scan last monday, onc appt yesterday.

IMPRESSION:  There is slightly increased uptake within a one cm node in the left popliteal fossa.  This is a nonspecific finding which may be both inflammatory and/or neoplastic in nature.

So, CT of left knee (?) scheduled thurs morning.  Onc not too terribly concerned although he does not like the location being on the left side (radical groing dissection, left, sept 2010, node involvement).

As for my other concerns - frequent headaches? stress. abdominal cramps? stress. leg aches? who knows!  weight gain? ben and jerry's phish food!!!!

Feeling pretty good about it being nothing, but...trying to breath!

:)Laurie

Do not fear tomorrow, God is already there.

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rbruce's picture
Replies 13
Last reply 9/28/2011 - 11:38am

Diagnosed with Melanoma in March.  PET/CT showed tiny tumors in my lungs so now I'm stage 4.  Testing showed that i have the Wild Type mutation NRAS Q61.  Before testing UCSF was talking about the new inhibitors for BRAF that are showing great success, but not for NRAS Q61 mutation.  This week I visited Dr. Steven O'Day at the Angeles Clinic in Los Angeles who suggested Ipilimumab and then Dr. Daud at UCSF the next day who is suggesting Carboplatin and Taxol in conjunction with Axitinib (A UCSF clinical trial).  Any thoughts, experiences, suggestions, ideas would be most welcome as I have to make a decision soon.  Thank you so much!    Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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momof2kids's picture
Replies 2
Last reply 9/28/2011 - 11:10am
Replies by: momof2kids, nickmac56

I had brain surgery back in June 2011, and just this past week my Brain doctor told me I can stop taking the Dilantin since I've never had a seizure.

Unlike the steroids where it took a month of weaning off according to the doctor, this time he wants me off these in 1 week, so instead of 3 pills a day, I'm down to 2 pills a day, and tomorrow thru Thursday I'll be down to 1 pill a day.

Just seems like quick stop, just making sure that seems right?

I am sorta nervous about going off though, I always like the extra protection of not getting a seizure of course, now it's like if my body wants to give me one it will.

So, just anxious to see if anyone else stopped taking theirs that quickly?

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justlittleoleme's picture
Replies 6
Last reply 9/28/2011 - 9:18am
Replies by: justlittleoleme, Anonymous, lhaley, mimi0201, nickmac56

My husband's surgery is Friday.  I have asked them to test the tumor for BRAF anything else we need to request?

We visited with a melanoma oncologist Monday who gave us three options for adjuvant treatment.

1) radiation 2) interferon 3) clinical trial with a)interferon b)Yervoy-depending on which group he would get into.

We will know more once the surgery is completed and the pathology results are back.

I am planning on attending the symposium in Chicago on 10/1.  I am hoping he is feeling better so I can go.  I think there is a lot I may learn.

 

Thank you Tim for this website!  I have learned so much and I feel my knowledge of melanoma is still in its infancy.  I really don't WANT to know more, but I NEED to know more.  I want my husband around for a long time!

 

barb

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

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mwilson's picture
Replies 1
Last reply 9/28/2011 - 9:09am
Replies by: Anonymous

Hi,

I'm new and hate to meet you all this way.  I was diagnosed as a Type II diabetic last July 2010.  This July 2011 I had a mole on the back of my calf looked at by  a dermatologist and after excision and biopsy, found it was melanoma.  Since it was deep, I then had a WLE and a SLNP with finding of one micro metastis.  Well, so much for happy news in the month of July!

I'm Stage IIIa. I've just had a brain MRI and will have a CT/PET tomorrow and then meeting with the oncologist next week.  He is setting up a referral for me with UofA AZ Cancer Center in Tucson.  Dr. Cranmer. 

The surgeon has recommended that the rest of the lymph nodes be removed.  My hesitancy lies in the fact that my mom had lymphadema and I fully understand the problems managing it.  I did find a meeting at the Phoenix Wellness Community next week that focuses on lymphadema so will go there open minded and increase my knowledge.  I'm just not sure of having the surgery. 

The oncologist and I have talked about 4 weeks of interferon.  My question is - is there any problem with taking metformin and interferon that anyone knows of?  The doctor was looking on line and could not find a reference. 

We are thinking that I just monitor my blood glucose more closely than I usually do.  I don't have a problem with high reading - I'm kind of middle of the road but under decent control with an A1C of 6.4.

Thanks for all the information that you put on this board.  It has surely made me more educated.

Michele

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/27/2011 - 10:24pm
Replies by: jax2007gxp

Hi Jacki,

I been away so I want to catch up with you.

I read some post you replied to.

How did you session with the lyphedema specialist go? Is the specialist at UCI??

Have you picked an onc yet for possible treatment? What are your thoughts about treatment?

I read your post about numbness in your thigh. I have the same skin numbness from middle of knee to groin from surgery 4 months ago and my thigh is still numb. My doctor tells me it might not get better.

Sometimes I feel sharp electrical nerve type pain in my thigh but nothing more. I have had other surgeries & the numbness never went away.  What does your doc tell you about getting felling in your thigh again.

Take care

Jamie

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Replies by: jimjoeb

Hi there,

I read this forum daily and have been really saddened by the experiences of so many people here.  I hate this horrible disease.

I had a WLE and neg SLNB in the groin (0.82mm, non-ulcerated, <1 mitoses) in December last year and since then have had two different types of pains which have been bothering me.  Neither need pain relief.  I have an aching feeling in the upper leg worse with exercise and seems to be ?lymphoedema.  One leg was 3cm bigger than the other at one point and I saw a lymphoedema specialist but didn't do any of the massages because I worry about doing it. 

The pain which is the one that bothers me at the moment, is a sort of stabbing achy pain in my left lower abdomen/pelvic area.  It is really bothering me at the moment, it has gotten worse.  I am hoping maybe it is because we are moving countries next week so I am stressed.  I am just not sure though and it is really quite sore.  My GP suggested "physio" some time ago but it really is nothing to do with my joint at all.  I had a PET/CT in April because of this which was clear although the initial CT indicated reasonably large lymph nodes (around 1cm) ...this is why the PET/CT was requested.

What I am hoping is that I might get responses of other people who have experienced something similar and that this might be related to the build-up of lymph? 

I dont feel I can go back to my surgeon and complain again about this pain, well I could but I dont know what would come of it.  I dont want to have unnecessary investigations, and I wonder at what point I would be happy with the results.  Maybe only time will give me some peace.  I just really would like to know what the cause is, and know that it is not the melanoma.

In any case we are moving countries next week (on Wednesday).  I dont have a new Doctor sorted out there yet but I might try and book in to see somebody as soon as we arrive.  The complicating issue is that there will be a one year period where I will not be insured for pre-existing conditions there and I will need to return here to have any sort of tx/investigations if required if I dont go through the public system (which takes forever).

If anybody knows of some excellent specialists in Brisbane Australia that would also be helpful.

Thank you for all of your help over the past 10 months or so.  This forum has really been so helpful (and very frightening at times).  I have had a lot of ups and downs trying to get my head around this with a very young family.

 

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jmmm's picture
Replies 3
Last reply 9/27/2011 - 3:55pm
Replies by: jmmm, janet-varner, ad2424

After a second opinion and thinking about it for a week, my husband wants to try for a PD-1 trial.  I've spent hours doing research and trying to find a trial, but I'm so confused!   I realize there are different drug manufacturers and they use a different number/letter combination for their drug.  I'm trying to track down a trial that allows for patients who have had previous yervoy/ipi treatment to enroll.  Please help!  Does anyone know where there is a trial for a PD-1 drug for a patient with previous yervoy treatment?  It looks like Sloan Kettering and/or John Hopkins might have a trial, but I"ve called and they all tell me that we'll have to come to their clinic to talk to the doctor.  We live in St. Louis and it would cost $500+ to fly up there to talk to the doctor.  We'll figure out how to do it, but I don't want to go all the way up there and have them tell me that he won't qualify because of prior treatment--they should be able to do that over the phone, right?  Thanks for any help--we're totally overwhelmed and confused. 

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Newmom's picture
Replies 1
Last reply 9/27/2011 - 3:29pm
Replies by: Newmom

My understanding is CT scan is more accurate in measuring tumor size.  Any thoughts?  I am seeing a difference of almost 3 cm in length with the 2 tests – CT scan is bigger in this case.

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jax2007gxp's picture
Replies 9
Last reply 9/27/2011 - 3:18pm

Hello all,

This past Tuesday I met with my surgeon regarding the surgery from a couple of weeks ago.  Based on the path results, I am Stage 3c. 3 positive nodes, 2 of which were matted.  Plus, the Cloquets node came back positive (after a negative result when frozen and tested while I was under in the operating room...the negative result caused him to skip taking out the deep nodes).  The Cloquets was positive for a 1mm spot in the middle of the node.  Of course, this worries me because the melanoma could have gotten to the deep nodes which remain in my body.  The doctor does not believe we need to go back in for the deep nodes because he believes it is unlikely the melanoma got past the Cloquets node since it is only 1mm.

I am being referred to the oncologist to begin treatment once I heal from surgery.  My concern is that the doctor told me that interferon is my only option because I am stage 3.  He told me that Yervoy and other options were for stage 4 patients.  Of course, I haven't heard this from the onc yet but I want to be prepared when I walk in the door.

Any feedback that may be helpful for my consult with the onc?

Many thanks,

Jacki

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LynnLuc's picture
Replies 4
Last reply 9/27/2011 - 12:36pm

I also saw Dr Weber and discussed going back to work. He thinks it's a great idea and says I am doing awesome. He also says I am ona good drug and feels very good and believes I will continue to have positive results...dare I hope! I have 2 more treatments and then I go to anti-pd-1 (MDX 1106) every 3 months....hoping to remain NED! Just wanted to share the news!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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CKasper's picture
Replies 9
Last reply 9/27/2011 - 11:16am

Hello to any one who reads this post.

I have been dealing with this disease since 1984.  My worst time has been since 2005 when I was staged III A or B.  I'm not sure because I have conflicting dr's notes.  At this point I don't think it matters.

In the years that followed I have gone through several surgeries and tried High dose interferon therapy which did not work for me as I had a very bad reaction from the immune drugs.

Last fall after getting out of the hospital for a serious heart problem, I was told I was cancer free....yeah, hurray!!!

Then my life really fell apart.  My husband left me, we are going through a divorce and my adult children hardly talk to me because they want to be neutral regarding the divorce.

I live in a very cold place in the winter and barely got through, I ended up in the hopstial I believe 3 times.

Every time I go to my internal med doctor he says I look good, and I just need to be positive and keep going.  I haven't had any body scans since last fall.  I had one for my head because I fell down the stairs (one of my hospital stays).

So since my "cancer free" delcaration, I have heart problems, falling problems, rash and welt problems, chronic pain problems, but I still got around, however I have noticed I have lost a lot of weight and my strength isn't what it was just 3 months ago.

About 10 days ago, I got welts, both arms became swollen, I have a hard time going to the bathroom, and on one night I got up and I felt I was going to pass out, this has happend a couple more times since then. 

I am eating when I have the strength to get up and fix myself something to eat. 

I have new pain in the right side of my body where all of this stupid disease started.  I am having a very difficult time taking care of myself.

I've been on and off this board over the years and I have read some pretty courageous things, but I think I am very tired of this disease and I think its back, and I think I'm going to let it take its course. 

I am frightend about getting up, and having the heart problem and passing out or dying.  Not so much the dying, but the lonliness and the fact that it would probably be days or weeks before anyone would say hey have your heard from her?

I'd like to say I do respect each and everyone's decisions on this board over the years, and I have seen great courage from those of you who ventured out and tried new things.

I'm tired of writing for right now and Wish you all good things and I'm going to try to do this every day, but the computer is upstairs and I' m not so good about being upstairs right now.  I do pretty much all my living on the first floor and sleep on the couch. 

So, thank you all for being an inspiration.  And hopefully I'll write and converse with you again soon.

I decided to post this anonymous.  However I am a Melanoma survivor of  27 years.

Peace be with you all, and hopefully the road to good health,

C

 

C

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