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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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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Jamie's picture
Replies 4
Last reply 10/14/2011 - 4:43pm
Replies by: Lisa13, jcraigdawson, Jamie, Anonymous

I have been NED 3 years. I had a PET/CT scan 1 month ago which revealed a "subcentimeter lung nodule" with SUV of 2.3....Doc said wait 3 months for further testing..Doc said not to stress it, so does that mean it's probably bening in nature or is there a bigger prbability it could be reaccurence(spelling)??? Any thoughts, or info is appreciated. Thanks ahead of time!    Jamie Stage 3a

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benp's picture
Replies 2
Last reply 10/14/2011 - 4:02pm
Replies by: Gene_S, benp
Strongdaughter's picture
Replies 6
Last reply 10/14/2011 - 8:46am

My father was diagnosed with Melanoma in 1999. At that time he had a Clark's 4 stage IIB melanoma, I think. A couple of his lymph nodes were removed at that time along with a large excision from his back. He was clear all the way through his 5 year check-up. 

Fast forward to this year. About 3 months ago he was having some lower back pain that he felt might have been kidney stones so he went to his urologist and was cleared of that. The pain then migrated to his mid back on the left hand side and he felt that he really needed to do something about it because it was beginning to be unbearable. At that time a chest x-ray was taken and the results showed a mass. From there the accelerator pedal has been pushed to the floor. He went through the PET scan to discover that he had lesions all over his body mostly concentrated to his bones.  He also has cells in one of the lymph nodes in his chest. He is in Stage IV now. He has had a complication that we were not expecting; he broke the top part of his pelvic bone while rotating to get out of the car about 1 1/2 weeks ago.  Radiation was started yesterday so we are hoping for good results and possibly some pain relief from this process. He is BRAF-. He is also slated to start Yervoy sometime this week or next. The oncologist that he has is wonderful and I would highly recommend him to anyone in the Charlotte, NC area. His name is Asim Amin.

So now that you have a little background on what is going on I am looking for information from other patients or family members that have a similar spread of cancer. Most of the people that I have read about have a soft tissue spread. Also, my interest in this whole process is about my future. I have had 20+ dysplastic nevi removed and I am concerned about the chances of Melanoma happening to me. I am here for any information that anyone is willing to provide because I have a firm belief that knowledge important in a time like this. I will be passing everything on to my father and mother.

Thank you!

Knowledge is power!

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When it rains, it pours!!!! Melanoma patients over the last twenty years have not seen any progress in the fight to cure Melanoma. That has all changed in 2011 when the FDA approved Yervoy (Ipi..Ipilimumab), an anti-CTLA-4 monoclonal antibody and Zelboraf (vemurafenib). Well, this all going to change Melanoma from a cancer to a chronic disease that may be stabilized or even cured. The new Kid on the block( PD-1) is another Surface molecule that is unregulated when the T-cells are activated. This molecule is time dependent , which means that over time it migrates to the surface. Base on the research today, PD-1 molecule causes global inhibition to activated T-cells and down regulates the IL-2 expression by the PI3K/Akt pathway. It also inhibits the ICOS molecule that is an important co-stimulator for the T-cells.

So with stakes high to be the first to market, Bristol Myer Squibb, a little known company, Amplimmune, co-sponsored by GlaxoSmithKline and Curetech, a subsidiary of Teva Pharma of Israel are in the race of their lives. Winner takes all. And to throw Icing on the cake, the blockage of both inhibitors (PD-1 and CTLA-4) have shown remarkable ability to eradicate Melanoma tumors in mice.

Bristol Myer Squibb seems to be leading this race with a clinical trials recruiting at Sloan Kettering in New York and Yale in Connecticut.

The study is “Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma”
Trial: NCT01024231

So with this in mind, if was seeking to try a clinical trial at time, I would seek out the combination first, then PD-1 and if all else fails, Anti-CTLA-4 therapy followed by IL-2.

I see a Stabilization/Cure on the horizon for this disease and others based on these immunotherapies.

“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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boot2aboot's picture
Replies 7
Last reply 10/14/2011 - 12:26am

I don't know if anyone on this board knows or reads Dr Mercola's blogs...but these last few weeks he has been running stories about Dr Burzynski and how this doctor's drug trial studies got axed by NIH...his study was about certain peptides...whatever...anyway, i hate it everytime there is some sort of 'conspiracy theory'...because it is upsetting to hear people run their mouths about being a 'possible' cure for cancer that was denied by the government because of jealousy, idiocy, whatever and cancer victims missed the boat...

i used to like reading mercola but i am beginning to think THIS guy is a HOAX...and very irresponsible...i would think if there is ANY validity  in regards to burzynski, a drug company would be NUTs not to buy the patent...cures are BIG MONEY...just look at the cost of yervoy...but then again, desperation makes one doubt and doubt....

don't back up, don't back down

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Anonymous's picture
Replies 1
Last reply 10/13/2011 - 8:28pm
Replies by: jax2007gxp

Been thinking about  you. How did your appts go with the surgeon & Onc?

Mary

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travers's picture
Replies 5
Last reply 10/13/2011 - 8:15pm

This week I got the biopsy report. Both biopsies came out melanoma.  This was a shock to me. My dad has been battling basal cell for 40 years, so I assumed that would be my diagnosis also.  The good news is that it is in situ. I am trying to gather information.  My dermatoligist removed the moles but I am going in next week to a skin cancer surgeon for surgery.  I am not completely clear on what the surgery is except that it will be painful.What should I expect?  Both moles were on my inner thighs but on different legs.  Is that normal? To have 2 moles that are both melanoma?  Once I have had it will it come back?  Sorry for all the questions.

All things work together for good to those that love God

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fdess056's picture
Replies 2
Last reply 10/13/2011 - 7:55pm

January 2010 showed by Doc a large freckle on my forehead.  He totally dismissed it.  8 months later it looked like  a mole & was dry and itchy.  Dermatologist diagnosed stage 3C Dec 2010.  Had surgery to remove mole, positive parotid gland and 16 lymph nodes (2 positive)   Had radiation and Interferon.  After 22 months cancer free, recent PET showed melanoma in left tibia near knee.  Had stereotactic radiation surgery 2 weeks ago.  Waiting for next PET in December and BRAF results.    Being treated at North Shore LIJ/Monter Cancer Center. 

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NYKaren's picture
Replies 3
Last reply 10/13/2011 - 4:24pm
Replies by: KatyWI, MariaH, rbruce

So, for those of you who've done IL-2 and gotten the itch (real bad), when does it go away?  Today starts week 3 from the start of the second week treatment.  I can deal with stuff still happening, but I'm living from Atarax dose to next Atarax dose.  50mg/dose, along with Doxipin, which is supposed to help.

Oatmeal baths feel great (especially when they're hot (a no-no)) followed by Sarna creme is a great fix for about 10 minutes.

Anyone else have any secret cure?

I can' wait to get scans--almost all the mel crusted under the aldera creme and most of it is off (leaving pigment behind) 

I'm so hopeful, I don't want to get shot down!

Thanx,

karen

Don't Stop Believing

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Anonymous's picture
Anonymous
Replies 14
Last reply 10/13/2011 - 12:47pm

My adult ( now 28yrs old) son was diagnosed with nodular mel. 6yrs ago this month.  He was stage 3.   After  2 yrs of treatments  (surgeries ,gmcfs, radiation, & interferon) he has remained NED for 5 yrs.   Yesterday he had his annual scans and everything was great!!!!   Then his Dr. oncologist, told them, since he has been "cancer free" for 5 yrs, annual scans are no longer neccesary.   My son did opt to do scans for at least 2 more yrs.  Dr also said, "the return of his type of "cancer"  very rarely returns after 5 yrs".  I was talking to my son's wife last evening, about  what the Dr. findings, and what he told them about the chances of no return, after 5 yrs.  I told her that was not true.  She got upset with me and told me, " he is a Dr. and he knows these things".  I am scared they will get less vigilent.   I was the one who was my son's caregiver when he was diagnosed, & while he did 2 yrs of treatment.   I was the one doing the research while he was fighting his battle, and trying to carry on with his life, and build a career.  Which he did even while going thru treatments!  He has an amazing story!   After my son got married, I handed over his recoreds to them.  I explained as much as I could, and the fact that this cancer is more then likely never gone.  This is a life long battle!   I know my son did know about the seriousness of this cancer.   He had always read his records.   How do I go about  telling them his Dr was so terribly wrong, without upsetting them more?   I can't believe my son excepted this!   I would like at some time to appoarch the subject of him going back to MD Anderson, for his yearly scans.  Yet, don't want to upset them more.    I do not know this Dr.   This is one he got after his original oncologist retired.   I sometimes think they both now live in denial, and this Dr. just reinforced their denial.  

     Another question, the scans showed he has a kidney stone.  How do they know it is a stone and not cancer in his kidney?  My son opted not to see a urologist, since the stone doesn't bother him.   Silly man!!!!   When this stone decides to bother him....... he WILL know he is bothered!!!    

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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 4
Last reply 10/13/2011 - 12:15am
Replies by: FormerCaregiver, momof2kids, Anonymous

My final ipi infusion is tomorrow and I just had bloodwork done today. My lymphocytes are up again from 225 to 258 which my Dr said is really good. Let's hope they keep going up once this final infusion is administered.  My LDH is up again but my Dr isn't concerned. It seems to go up, down, then up and down again, so if he's not worried, neither am I. Perhaps my lung nodules are inflammed from the attack of my immune system :)

I'm holding my almost 2 year old daughter while I'm typing this and pray that this drug will work for me for a long time.

Lisa

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

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Lauri England's picture
Replies 8
Last reply 10/12/2011 - 9:10pm

The nurse from my doctors office called me with the CT scan results after I have called 3 times.  I was told I have a 3 mm nodual on my lung and my liver is showing abnormalities.  She said the doctor would go over this with me in more detail at my appt on the 20th.  I am freaking out.  The nurse did say that the doctor wants me to be re scanned in 6 months.  6 Months!!!!! Yeah right.  I need to know what my choices are.  I just finished a year of Interferon a month ago.  I know they are not sure at this point if it is Melanoma but I know going into this my scans were clear with no abnormalties.  Any advice would be appreciated.  Thank you and God Bless!

Don't sweat the small stuff. There are bigger fish to fry!

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