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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Replies by: Anonymous, boot2aboot, LynnLuc, MeNDave, deardad

The oncologist told us today that my husband's latest PET/CT disclosed a couple of new mets and some growth in pre-exisiting mets.  This means that the drugs are no longer working for him and we are on to plan B, which we need to decide upon very soon.  The two options the doctor presented were:

 

1. enrollment in a phase two clinical trial by MERCK on PD-1 or:

2. treatment with Yervoy and the Roche BRAF inhibitor as a combination therapy.

 

The doctor said if it were him, he would do the trial.

 

Does anyone have any informtion on the PD-1 trials?

 

Thanks

Deborah

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  Just wanted to pay my respects in the one forum where we can really share the pain.From all I have read and heard about Gary was that he was a very warm and honest man besides being one hell of a ball player.RIP   Gary Carter .

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This post has been in the works for five years. It is with my tenacity and help from researchers around the world I am able to present this paper. It is still in draft form but I thought was important enough to just get it out there. It may be to technical for the average person/patient but, it is well worth downloading and presenting to your oncologist and or medical team.

The gist of the paper is we have responders and non-responders to therapy. WHY?? with the help of Four on the most influential researchers in the Melanoma field, Dr. Craig Slingluff, Dr. Thomas Gajewski, Dr.Kingston Mills, Dr. Jim Allison and others, I was able to put some puzzle pieces together to tell a story. A story that may just save your life

In short, the non-responders may be/are missing the "Danger Signals" inflammatory Cytokines. Why, because their tumors are most likely harboring M2 phenotype macrophages (TAMs) Tumor assisted Macrophages.

But these TAMs have plasticity. This means they can change phenotype based on their miroenviroment. With some coaxing they can be change into M1 macrophages which in turn actiavate the T-cells. This means the patient needs to have therapies that promote M1 and Th1 cells. Well both Dr. Allison and Dr. Mills have discovered ways to do just that.

Please take some time to download and read this historic paper. It just may be the game changer for cancer.

 https://www.box.net/s/mzxb1b2o0tue44a3z3xo

 

I am going end with one slide.

 

 

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~
Take Care,
Jimmy B

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Angela C's picture
Replies 6
Last reply 2/17/2012 - 4:38pm
Replies by: boot2aboot, Angela C, LynnLuc, Rebecca and Bob, Anonymous

Hi there.

I have an adrenal tumor and a tumor next to the pancreas that need to be removed surgically since I have failed IL2, MDX-1106 and Yervoy. It's been decided to try and get into the TIL trial.

My doctors office contacted NCI today and I an waiting to hear from them on what information I need to send. I'm just wondering how long it has taken others to get in for a consult? We as patients always want things done yesterday. :) I'm just concerned how long it might take for me to get everything compiled and sent and then how long it will take got them to get me scheduled. Every day we wait us another say these tumors are growing and becoming harder to remove surgically.

Also, do you know if they will remove just part of a tumor for TIL if they are unable to remove the whole thing?

Thanks!!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Karin L's picture
Replies 7
Last reply 2/17/2012 - 4:27pm

My onc. requested I see a neurologist for relief or treatment of my neuropothy in my hands and feet.  It has gotten worse since the onset about a month ago.  My appt. was today. 
She has me going in for a battery of tests.  Is this really necessary?  She has me completed freaked out in the meantime (told me not to worry, ha!).  MRI of the brain (just done in Nov.), MRI of the spine, and MRI of thora...(not sure what that was/is).  Bloodwork (I get that), a nerve conducting test. 

I also get ruling things out from the Dr's point of view, but I am anxious to say the least.  I requested an open MRI and the answer was ABSOLUTELY no.  She said the pictures aren't good enough.  Really? 

I am 8mos. out from IL 2 treatment and was under the impression neuropathy was fairly common.  My onc. was sure it was not the cancer but a side affect from treatment.  The neurologist kept hinting at the melanoma possibly in the spine, brain, nerves, etc.  I have been responding to the IL2 treatment since week 1 in the hospital.  Last scans in Dec. show continued improvement.  Many tumors disappeared, others shrunk by 80% or more.  Bloodwork last week excellent.  Could there be issues in the brain (MRI clean in Nov. when they checked for rining in the ears), or spine that are not responding? 

She said there was very subtle differences between my right and left legs.  For those with neuropathy, did your muscles also feel weak? Or heavy at times? 

So frustrated, thoughts?

Karin

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katiebird's picture
Replies 5
Last reply 2/17/2012 - 4:09pm
Replies by: ElaineLinn, katiebird

It's been a while but I'm back with a question. My primary was Stage 1B  on my left thigh in the summer of 08. SNB and WLE were both all clear and I've had clear check ups regularly since then other than one spot on my left calf that required just removing the skin around the site to be safe. Can't remember now what that procedure is called!

Fast forward to a month ago, I noticed a small lump right below my left jaw bone. At first I thought it was a pimple but it never really went away. The nurse at the school I work at checked and said it was a swollen lymph node. I'm sure I've had swollen lymph nodes before but I've never known it. This has been over a month now and I'm wondering if it's something worth getting checked out, and if so by whom? Do I go to my PCP or my dermatologist? I'm sure it's something totally unrelated to my melanoma but that thought is always lingering in the back of my  mind.

Thanks

Kate

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Replies by: Swanee, gtown, Janner

I haven't been on this site in about 9 years - I'm just over 10 years NED after a stage 1B melanoma on my ear.  Recently a friend of mine was diagnosed, but I thought it was odd that the Dr. told him he has metastatic melanoma, but the only thing they have done so far is an excision and biopsy.  It is 3mm, but without seeing the lymph notes or doing scans, how could you diagnose this as metastatic?  Am I missing something?

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Shawna1972's picture
Replies 13
Last reply 2/17/2012 - 10:22am

Wow, what a last few weeks I have had.  I would appreciate any feedback or answers that you can provide.

I went to the dermatologist a few weeks ago to have, what I thought, a mole removed for cosmetic reasons - as it was on my face.  Had it for about a year.  Dermatologist said 'I'm not so sure that's a mole, I suspect that possibly could be basal cell - but we'll send it to the lab to see'.  I was less nervous about basal cell, I thought ok, if it's basal cell - she just took it out.

Two weeks later, I got the call to come in and discuss.  Derm advised lab had a hard time figuring out what to call it.  From what I gather, the punch biopsy showed 'potential' for malignant melanoma.  The margins were not clear, so I know there will be another excision. Do I expect bloodwork, xrays, scans? Also, the report advises a low mitotic rate of less than 1%, hopefully that's a good thing?  Two Dr.'s were consulted by lab, one had the conservative approach opinion of another excision and watch - the other more radical, involving lymph nodes.

I contacted my primary care Dr. who has referred me to a hematologist/oncologist for an initial consultation next week.  Any advice on what to expect at an initial consultation? Also, would an elevated blood calcium level that was found last fall, have anything to do with this?

The research on the internet is freaking me out.  At this point, I have no stage, no real concrete of a diagnosis for melanoma - just 'potential'.

Any help or insight would be greatly appreciated!

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natasha's picture
Replies 2
Last reply 2/17/2012 - 5:57am
Replies by: natasha, washoegal

Hi ! Is it a lot of people from UK?

Hospitals you can recommend ? I am in Adenbrooks Cambridge ,but seems like things are going so slowly ,it takes month between my primary surgery and wide excition / SNB. Still waiting. Looks like our friends from USA are in better hands regarding hospitals and treatment.

And another question - could you recommend some food suppliments we can buy here in UK?

Thank you and God bless you.

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chermes55's picture
Replies 1
Last reply 2/17/2012 - 3:07am
Replies by: FormerCaregiver

Reached day 21 in my new trial. other than a slight non-bothersome rash between my shoulders i havent really had any side effects. This week i have returned to work and trying to resume life as usual. i have had some slight fatigue but not sure if it is actually related to the trial or the fact that i have been pushing myself harder than i have in the last year. Looking forward to my 2 mo. scan at the end of march to see if this thing is working. I know that i will never completely regain a completely normal life, but at least i can have the chance at the illusion of one. Since the interferon ended my appetite has went thru the roof and i have gained 15lbs since december. My mental state has had its ups and downs in the last year mainly because of the interferon/lexapro combo and lately just do to having lots on my mind. I am on a mission to keep my head up believe in my docs and this trial, its an uphill battle but im never going to give up.  

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CMH's picture
Replies 1
Last reply 2/16/2012 - 12:33pm
Replies by: Janner

I had a basal removed soon after my melanoma surgery (November 2011, 1B.)  The basal was about 6 inches from my melanoma.  The melanoma scar never bothers me, but the basal scar hurts  - kind of a burning, itchy sensation.  It's very dark pink but seems to change shades of pink, like a mood ring.  There's a bump underneath the scar (which started out smooth.) At my three month check, my dermatologist didn't comment on it.  I wish I had mentioned the discomfort, but I was preoccupied by a lesion on my hand (turned out to be a wart!!)  Anyone have trouble with basal scars?

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yoopergirl's picture
Replies 7
Last reply 2/16/2012 - 12:01pm

The more I read on this board the more I realize that I am not informed on my cancer status. Was told in December I am stage 4 with the melanoma spread in my lungs from my primary in my left finger(2006) a reaccurnace in Dec 2010 to the forearm and lymph nodes.

What I am asking for is some questions that I should be asking the oncologist on Monday, I see him before I have my third yervoy infusion.

I do know that I am Braf negative (whatever that means) don't know much else. I am being seen at the Marshfield clinic in Wisconsin. I am actually his first patient for the Yervoy. I have gotten 3 opinions already and they all said to go with the Yervoy since interferon was too hard on me last year, did the month infusion but it made me so sick had to stop the shots at home.

As far as the Yervoy I am tolerating it well, my labs are all good but am having alot of the itching. You all are such fighters here and I intend to be too so am thanking anyone who could help me out here....yoopergirl

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yoopergirl's picture
Replies 2
Last reply 2/16/2012 - 9:37am

I am currently on Yervoy, having my 3rd infusion on the 20th. Last night while I was putting on my ointment for the itching I noticed on my arm was another lump a few inches from my other one, my blood work is scheduled for this Monday and then the nurse from the clinic will call me with the results I will have to tell her about this new lump, I really don't understand why they don't take them out now, things I have to ask the doctor but in the meantime get very anxious about these lumps. Has anyone had surgery while on Yervoy?  Thanks  yoopergirl

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Anonymous's picture
Replies 3
Last reply 2/15/2012 - 9:03pm
Replies by: runnergirl, Richard_K

Is there an issue with this feature? 

I now receive a message about ' this page is under construction or not available...'?

Luke 1:37

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Jydnew's picture
Replies 6
Last reply 2/15/2012 - 8:43pm
Replies by: CLPrice31, Leigh, Mike N, natasha, Anonymous, gtown

Hi,

My husband just returned from his oncologist and remains NED 10 years after being diagnosed at stage IIIA.  He had his last CT scan in August, and continues with annual chest x-rays and semi-annual bloodwork.  He was originally dx in January 2002 with a 1.3mm depth melanoma on the right tricep area.  There were micromets in 1 or 2 nodes (I can't quite tell from the path report).  He opted for no further interventions after surgery to remove the rest of the lymph nodes in his armpit.  He is now 36.

I hope for NED for everyone on this board, and wish daily for a cure for this horrible disease.

Wendy

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