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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deardad's picture
Replies 6
Last reply 10/9/2011 - 5:54pm

Hi just a bit alarmed that my dad found a swollen lymph node in his neck tonight after three weeks on vemurafenib. Two small tumors on his body have flatterned out completely but now we have found this lump in the neck? He did have a sore throat for a week before but everyone is so stressed out! Does that mean BRAF isn't working or are we just being overly worried? Im so over this stupid disease and its so heart breaking to see my dad and mum go through this...any information would be helpful please.

Daughter of the patient.

Nahmi in Melbourne.

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Steve W's picture
Replies 2
Last reply 10/9/2011 - 10:16am
Replies by: Steve W, JerryfromFauq

I'm currently in a trial with GSK using the braf drug GSK2118436.  The mets in my lungs have all reduced in size and even disappeared in my liver and spleen.  But a met in a porta caval lymph node doubled in size on my last scan and indicated "hot" on a followup PET scan.  Apparently it is not responding to current treatment.  i will have a followup appointment in a few days to discuss my options, but my understanding is that surgery may not be an option.  Has anyone gone through radiation treatment on porta caval lymph nodes?  Any other advice?  

 

Thanks,

Steve

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rbruce's picture
Replies 12
Last reply 10/9/2011 - 3:46am

So, looks like I may be going the il-2 route as my stage 4 Nras positive mutation doesn't have many options, and il-2 is the only thing offering a proven continued durable response.  Although the percentage isn't high, at least there is the potential of a long term response. Anyways, I am hoping that some of you can tell me about the facilities and il2 teams and the care provided, especially any in California.  I had decided on a chemo trial to start thursday, but I'm having major second thoughts.  This will be my first treatment.  pet/ct 2 weeks ago showed a number of small lung tumors, largest grew from 8 mm to 1.1cm.  I like what I've read about Til therapy, but need at least a 2cm tumor to qualify.  Also, newly found bone met in a rib and lymph node under my armpit lighting up. Any comments/experiences would be most welcome.  Thank you.  Robert 

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

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I am trying to do some research and writing on the clinical trial system  - specifically as it pertains to treating advanced cancer.  I don't feel Will, the person I lost to melanoma, was served well by the system, but want a broader range of opinions and views on it. 

If anyone could share articles, resources, opinions, experiences - I'd be most appreciative.  I'm doing work on a graduate degree in public administration and am doing it for this reason - and personal ones.  Please respond here or email me at Brennan07@aol.com

 

Thank you!

Lori, caregiver to Will, who has been gone a year on Oct. 6....

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The next immunothrapy that will most likely be FDA approved.

Here is a video that may help you understand how Anti-PD-1 works. The that they use is call CT-011. It is the anti-PD-1 monoclonal antibody.

CT-011 Anti-PD-1 video

http://4.bp.blogspot.com/-rEy2qXLft_k/ToEU-WPfFyI/AAAAAAAAAf8/Euv0RQLlwxM/s1600/Tumor%2Bwith%2BPD-1%2Bupregeulation.jpg

Best regards,

Jimmy B

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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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