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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emilypen's picture
Replies 16
Last reply 10/8/2011 - 6:45pm

Hi All,

My hubby started on chemo this week, Monday. My question is how quickly does it normally show results after 1 treatment?

He has a lot of sub-q mets on his back and chest, and we felt they were starting to shrink before the treatment on Monday although the doctor felt IPI had not been successfull in any way because his internal tumours had grown so much.

Now however , almost all of the sub-q's on his back and arms are starting to flatten out and get smaller. I noticed it on Tuesday and thought there is no way it's the chemo working this fast?

 

Would love to hear others thoughts and/or experiences?

 

thanks,

Em

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bblapril's picture
Replies 16
Last reply 10/8/2011 - 3:46pm

A couple weeks ago I posted a topic "bump on neck" and I wanted to give an update and look for guidance.

The bump is two swollen lymph nodes and the biposy revealed more melanoma.  Also, the neck and chest scans revealed that it has spread to the lungs.  I am shocked how quickly this has happend.  He just had his neck disection in June 2011 and started interferon in July and petscan was clear in July.  Surgery has been scheduled to remove the nodes next week.  After a two week healing time he will begin IL2.  Any info or thoughts about this would be appreciated.  Thanks so much!

April

Be a fountain not a drain

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Lisa13's picture
Replies 3
Last reply 10/8/2011 - 1:02pm
Replies by: Jim M., mclaus23, mombase

Has anyone experienced hot flashes on ipi/Yervoy?  Mine started today and just wanted to know if this happened to anyone else. I have my 4th infusion next week.

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Lisa13's picture
Replies 3
Last reply 10/8/2011 - 12:59pm

I'm currently scheduled for my 4th round of ipi next Thursday. I've also been sick with my first cold in 2 years which has finally let up after 10 days.  That being said, do you know if a weakened immune system via a virus could cause ipi not to work that well, or does the power of ipi work on the immune system in another way?  I also started Entocort (steroids)  today for a possible mild inflammation of the colon which I'm not happy about.  I know steroids also weaken the immune system so I'm upset that I was so close to completing this treatment without my immune system being compromised.

Does all this make sense?  Do you have any knowledge whatsoever?  I'll know next week if my ALC #'s are still going up and I really hope they are.

Thank you,

Lisa - Stage 4 

Many impossible things have been accomplished for those who refuse to quit

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Lisa...His Wife's picture
Replies 19
Last reply 10/7/2011 - 10:25pm

I have to look at it that way...that every morning is...a good morning.

I just tried to set up a profile page...having registered just this morning.  When my husband was first diagnosed with melanoma I found this site but I did not bookmark it...luckily I stumbled back in here somehow this morning!

In that short time...since May of just this year...it already seems like a liftetime...we have traveled far...and quickly too...on this journey.

I'm not fond of the term Caregiver... because...to me it's way more than that.  I am Lisa...His Wife.

I tend to ramble.  I ask too many questions.  I am concerned.  I am afraid.  Yet...at the same time...I listen.  I am compassionate.  I am strong.

Our journey is...for the most part...as fast as it is happening...in the beginning stages I guess.  I hope to find guidance...or maybe just acceptance...along with much understanding...in this group.

I am honored to be here...and with much respect

Lisa...His Wife

Cherish The Moment

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mom3girlsFL's picture
Replies 8
Last reply 10/7/2011 - 6:13pm

So I had a PET 2 wks ago and it lit up in a node (small SUV, 2.5) in the poplitieal fossa (behind the knee) in the same leg my radical groin dissection was done last year.  Onc sends me to have a CT to "double check"...

Results of CT were normal except for "non-specific prominent enlarged node popliteal fossa".  This was left on my answering machine from my onc's assistant as my onc is on vacation till monday.  The assistant said she will put my chart on doc's desk for monday morning.

So...of course my gut says it's mel...BUT, my optimistic, treat everything with a little humour side, is telling me maybe it is not...

I know a biopsy is probably the next course of action?  My hubby says why are they messing around with this - why did they CT? the PET showed it, why didn't we biopsy then? and why are we biopsing (sp?)? just take out all the nodes!

Advice? Comments? Anyone?

:( Laurie

Do not fear tomorrow, God is already there.

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Bonnie Lea's picture
Replies 3
Last reply 10/7/2011 - 4:04pm
Replies by: Anonymous, bcl, JerryfromFauq

Should prob post this on the other board but it happened here.  A old post of BCL telling us the passing of Cass was brought up front (I got the thing to my home)  from Feb from one of those 'bot'  anonymous told me about the other day.  Relieved all those feelings and seeing a dear friends name (who has since passed)  can't they be stopped?  Is it someone out to get us?  why pick such type of posting?

Bonnie Lea

Just Keep on Hanging In

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Jan in OC's picture
Replies 8
Last reply 10/7/2011 - 10:11am

Hi everyone,

Just a quick update on hubby, cause my life is really crazy!!!  Haven't been on here for a couple months.  After Dirk was taken off of IPI (yervoy) in May,  he started on the E-7080 trial.  It's been two and a half cycles, yesterday, our UCLA oncologist pulled him from this trial, too many new tumors growing. This brings our time at UCLA to an end

Dirk has an appointment with Dr Papadopoulas at MD Anderson in Houston on August 9th.  He believes that this move will give him the best choice of treatment options. I am driving the family, leaving on Tuesday, July 26th.  So long, Southern California, hello Texas...Dirk says he'll be saying "ya'all" in no time!  

Working hard to ensure that the move goes smoothly, and all of "my stuff, his crap" gets there safe and in one piece.  After this, I need a vacation!!   Still trying to arrange transport for our other auto to TX and find us a permanent place to live there.  Luckily, MD Anderson staff have been very helpful in finding us short term lodging until we can find our way around.

I will have to change my sign in name, no more "Jan in OC".   lol

laughter is the best medicine

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Shimian's picture
Replies 6
Last reply 10/7/2011 - 4:07am
Replies by: Bosandi, cwu, Shimian, ccbreeding

My father had wide excision (without graft) of a new melanoma spot on his left foot sole two weeks ago. But the biopsy shows melanoma cells on the margin. We are sad and upset about this. The surgon said he would cut off bigger area and apply a synthetic skin graft at a interim basis and wait for pathology confirming clean margin before putting a permant skin graft into place, which means that my poor dad will have to go through another 2 rounds of surgery.

The surgon was reluctant to cut off bigger area in the first surgery two weeks ago as he was concerned of using skin graft on weight bearing foot sole. 

Can anyone who went through skin graft on foot sole or other weight bearing spot before share with us the experience? How will skin graft affect walking in the future? Is it necessary to have interim synthetic skin graft? Does skin graft on foot sole require better skills/experiences from surgon? What questions shall we ask to ensure we have the right surgon and right plan down the road?

Thanks.

 

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justlittleoleme's picture
Replies 6
Last reply 10/6/2011 - 11:44pm

We had surgery on 9/23. Pathology is back and there is no staging information. Dr.'s nurse said because tumor was below skin they don't stage the cancer. The report states it is metastatic melanoma. Originally we were told stage 3 since it is a local recurrence. I am confused since metastatic melanoma is stage 4. I would like your thoughts since staging between 3/4 makes a difference with regards go the treatments available.

Also, we are approaching two weeks post op. One of the dr's we are consulting with wants a brain MRI to rule out brain involvement. Our local hospital said we need to wait until 8 weeks post op. The consulting dr has him scheduled 10/14 for the MRI. Do we need to be concerned about the MRI and his internal stitches? Anyone ever encounter this?

Thanks, barb

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

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Donna M.'s picture
Replies 4
Last reply 10/6/2011 - 8:25pm

Is anyone going to the symposium on Saturday?

Peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart. (Unknown)

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Anonymous's picture
Replies 7
Last reply 10/6/2011 - 6:25pm

every time my husband gets a mole cut off the waiting game ages me years. i dont understand how some people dont find out for 2 weeks - that just seems insane to me. what seems to be typical - 1 week? 1 day? does it just depend on how many other moles the pathologist has to review?

thanks!

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himynameiskevin's picture
Replies 11
Last reply 10/6/2011 - 4:51pm

Hello,
A quick update from my room at the NIH...
Well in the beginning stereotactic radiation got rid of a small brain lesion, IL-2 cleared up my liver. And surgery got the mass off my back. Then with numerous lesions still in my lungs, I was accepted to the NIH last year and in December I participated in the "Adoptive Cell Therapy" protocol. Initially I had a good response, I think as a whole things went down around 20% over the first few months. As time went by, monthly scans showed the shrinkage was slowing down. And in late August, one had appeared to be growing again. But just one, the rest are still stable. So I was told to come back this week, with the Doctors intentions of a small surgery to remove the defiant one, and hope the rest continue to remain stable. But it turns out the tumor is not in an easily accessible spot as they thought so that idea was scratched and about 5 other options were discussed. It came down to the doctors suggesting I go back to San Diego for some systemic therapy. They suggested Ipilimumab. They said my immune system is still strong and smart enough to keep these things at bay, and hope the ipi will give them a little push to make a difference. 

So my time here at the NIH is over for now. Officially signing the papers and checking out. A sad day indeed. I fly out tomorrow morning. And even though this one is getting bigger and I wasn't one of the lucky complete responders. I don't regret coming here at all.  They did their best and I'm in better condition than I was a year ago today. Deciding to come here has to be one of the best decisions I've ever made and feel very lucky to have a doctor who encouraged and help get me in. I recommend this place to anyone who has the opportunity. 

So as of now, I have an appointment to see my oncologist in San Diego next Thursday. I'm sure he'll have some input, so I'm not sure if Ipilimumab will be the final decision. But it seems to be leaning that way right now.

Has anyone on here had a good response to ipi they'd like to share, whether short term or long term? It's a bit scary going into something new, and sometimes internet statistics can be misleading and discouraging. Hearing a success story or two can make a 1% chance feel like a 100% chance so I'm interested to hear.

Thanks, I hope everyone's doing well and I'll talk to you soon.

-Kevin

 

And now to one last night in my home away from home. I'm gonna miss this place, and all the staff that took care of me like family and not just a patient.

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Replies by: Anonymous, jim Breitfeller, momof2kids

I am suppose to have Yervoy soon , Ipi, and I keep hearing about this trial called PD-1 or PDL-1. I've had quite a Few
People from the bulletin board tell me to hold off on Ipi and try to get into this other trial. So now I'm totally confused. Can anyone share their knowledge on this and if you are in
The trial and what the side effects are like. Sometimes it's more stressful trying to figure out what treatment to do than having cancer itself. Everyone wants to tell you what to do and where to go.

Becky Stage IV

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dearfoam's picture
Replies 1
Last reply 10/6/2011 - 4:44pm
Replies by: justlittleoleme

Had to take dad in to the neuro unit at our hospital yesterday. his slow, slow, slow taper off of the low dose dexamethasone from 2 mg, to 2 and 1 mg every other day, to 1 mg/ day over several weeks appears to have resulted in some bonus brain edema around one of his larger brain tumors. His Radio Onc who usually looks at this was out of town, and so was the Neurosurgeon who we have seen once recently (about an upcoming crainial needle biopsy to determine BRAF status), so the report got jumbled like in that game "telephone."

So anyway, I had initially called his medical onco's nurse to report the increased confusion/ less stable walking/ nearly falling several times. That had mostly happened on Monday evening (though later he told me and the nurse it had happened Saturday, which was news to me). Was a lot better balance wise Tuesday AM, but not back to his baseline and still confusing some little things. Not enough to be alarming, but I thought I should report it since we had to swap his quap can for the old walker.

By the time the triage report got from hematology to radiology to neurology, etc, apparently the story got exaggerated. The nurse called and said, go straight to admissions, we need to do an MRI and skip the ER, the dr subbing for your nero will meet you there. Go now. The nurse on the phone was so sweet, but I was caught off guard and didn't ask wy we were admitting him if he just needs to do an MRI and get back up on the steroid - I mean, I understood they probably want to observe him if the suspect bleeding or other sweeling issues in the brain. So I got him settled into the room, etc, the on call dr makes his orders, and then the admitting neuro's resident dr comes in and says, well, you don't look as bad as the picture painted for us. Come to find out, they heard he'd gotten completely immobile, in a wheelchair, and whatnot. He still needed to been seen and everything, and get the tests done to rule out some other possibilities, but it was kinda weird feeling like oh, he's not as bad as they thought, but its not my fault... He did spend the night and get the MRI done, which did show slightly increased size of one tumor in the left temporal area, and swelling there.

I guess dad will be on dexamethasone the rest of his life... it's already been since April!!!

Just wanted to recount the story. I'm glad everythign was managable, but boy I am exhausted after all the running around over town, worrying, trying to get the accurate story to drs, waiting hours for discharge... and of course I got the usual all day tension headache that comes FREE with every hospital visit we make!!! On top of that, I got to remind dad, whoc is still confused just on certain details, why we are there and to stop calling the family to tell them made up stories about what we are there for, like brain surgery. (?!?)

SIncerely Exhausted,

DF

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