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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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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Anonymous's picture
Anonymous
Replies 9
Last reply 10/10/2011 - 12:04pm

Have been dealing with Melanoma Stage 4 to Liver for over a year. Multiple traditional therapies and clinical trials attempted. Not much success. Anyone have a recommendation for alternative therapies such as supplements/health food items??

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jax2007gxp's picture
Replies 6
Last reply 10/13/2011 - 11:27am
Replies by: Anonymous, jax2007gxp, Vermont_Donna, FormerCaregiver

Hey all,

Hoping someone is home on a Friday night...last night as I was falling asleep I noticed what feels like a small but swollen, sore lymph node in the left groin.  I fell asleep and forgot about it until just now when I felt it again.  Could mel have jumped from the right side to the left and so quickly?  I just had scans on 9/6 which only showed the mel in the right groin and the LND was done just a few days later on 9/9.  I know there are multiple reasons for lymph nodes to get irritated, but I have rarely ever had groin ones swell throughout my life.

I see an oncologist for consult on Monday and my surgeon on Tuesday, but I think I am going to need some reassurance to get through the weekend.

Many thanks,

Jacki

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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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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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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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cwu's picture
Replies 2
Last reply 10/14/2011 - 10:12pm
Replies by: cwu, FormerCaregiver

Hi everyone,

My father has in transit lesions a year after surgery to remove tumor on his right heel. These lesions mostly on his calf and they are popping up on his skin so you can see them (not sure if cuteanous is the right word).  He started his first dose of Yervoy (IPI) almost three weeks ago.  Since that infusion, his lesions have started drying up alot.  There is one that is quiet big and the skin around it is so dry that it started cracking and bleeding.  I was wondering if anyone has similar experience and what recommendations you have.  It is not bleeding alot and it doesnt cause him pain but we are concerned about infection. We were hoping that since the lesions are drying, they would start falling off.  We have taken pictures and sent them to his Dr. and waiting to hear back.

Thank you for any suggestions.

Chau

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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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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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MaryD's picture
Replies 13
Last reply 10/11/2011 - 10:56am

Just wanted to share some encouraging news - I am so humbled and grateful to report that my recent scans were clear and finally made a 3 year mark without a  recurrence.

I was DX in 2001 and in 2007 moved to stage IV status via one lung met.   During the past 10 years, I've done 1 year interferon, a peptide vaccine trial, radiation, an Ipi trial for resected disease, and finally, 6 months of pulsed IL-2 treatments two years ago.

Needless to say, I will never take this for granted.   Over the many years I have been on this board, there have been so many brave warriors fighting this disease with such grace and dignity  and there seems to be no rhyme or reason as to the outcome.

I can only hope that this news provides hope and encouragement to all of you who are fighting this battle.   Please know my prayers and good thoughts go out to all of you . .

Best regards,

Mary

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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 4
Last reply 10/21/2011 - 2:54pm

My Dr. told me to start taking my Entocourt today and I'm a bit leery of taking it.  I know the risks of ipi, but other than a tender to the touch area on my lower left side (above my pelvis), I have no symptoms.  He believes it may be the start of inflammation in my colon/intestine and wants to keep it under control. 

I know this drug effects the gut, but it also mentions "weakening of the immune system" which is not what I want to have when I'm so close to finishing this treatment.  Can this steriod take away the effect of ipi or do they not even know this yet?  I see my Dr. next week, so I'll probably take it and see where I stand next week.  I'm currently still battling a cold I've had for a week, so I don't want to weaken my immune system even more.

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

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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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Bruce in NH's picture
Replies 5
Last reply 10/11/2011 - 8:10am

Hi,

I am in the process of completing the 42 day Temodar chemo pill program which is designed to attack the melanoma metastases in the brain. I have just completed the 25th day of 42. My question has to do with how many days after the program ends should the next brain MRI be done to assess treatment success. Since it's a chemo based product, one would think you might need several weeks for the chemo to knock down the mets. If you have experience is this area, I would like to hear from you. I need to get down to 3 or less mets to enter the t-cell clinical trial at NIH in Maryland, so this is very important to me that Temodar be successful. Any related comments regarding your success with this drug are appreciated.

Bruce

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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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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