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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triciad's picture
Replies 8
Last reply 7/15/2011 - 7:14am

Hi Everyone,

Last Saturday, I noticed a small bump close to where my original tumor was found.  I went to the dermatologist on Monday, and she tried to do a punch biopsy, but it was too deep.  She immediately paged my oncologist and surgeon to set up appoinments and talk with them.

So, I met with my oncologist today for our regular 3 minute visit.  He walked into the room and said, "I know all about it.  It's an in-transit.  We're scheduling you for a brain MRI and a pet/ct.  If all are negative, then meet with the surgeon on Monday.  If something else shows up...come back to me.  Don't worry, I'm going to make sure you are fine."   And that was it.

Can anyone help me out here?  What is an in-transit?  What does it do to my current staging of 3B?  I'm one week shy of being 2 years NED.  This is the second time I'll be getting a cancer diagnosis for my birthday on Tuesday.  Shouldn't I be getting diamonds or a fabulous vacations somewhere?

If anyone can explain these in-transits to me I will be forever grateful!

Tricia

 

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Karin L's picture
Replies 6
Last reply 7/17/2011 - 11:55am

I apologize in advance for my ignorance .  A brief history.  Back in '06 I had an orange sized area from my left thigh surgically removed that was melanoma (cannot remember the breslow? Clarks...etc.).  A SNB was done that came back clear.  CT Scans yearly came back clean (later found out only the abdomen and chest were being scanned) In Nov. of  '10 I felt a lump in my left groin area that turned out to be several nodes of mel as well as metastis to the liver and a "sprinkling" in the lungs.  My oncologist at the time really messed up my head by telling me I had "about a year to live" and "there was nothing more he could do".   He gave me the name of a melanoma specialist to see which has been my lifeline for the last 8mos.  I had left his office with no hope at the time and protected myself mentally (my minds way of doing so) by not willing to hope too much.  Makes little sense, but it is what it is.  I was willing to fight though. 

Fast forward.  Was accepted into the OncoVex clinical trial.  Tumors in groin were shrinking and Dr. was very hopeful the immune system was taking care of the rest.  First CT at 3 mos. showed otherwise.  Many new tumors in the liver were found.  Dr. wanted to do high dose IL2 asap.  Began in early Apr. and ended stay 4 approx. 4 weeks ago.  Went for CT last Friday and here is where my question begins.  I know what the Dr. said and I feel absolutely blessed, but I am left with questions so I come to you since they sound so ignorant when I think them. 

All tumors in the liver are gone except one small area (the original area).  No more treatment at this time and Dr. is very confident that area will be gone by next scan (2mos).  He also said (and told me he rarely says this to his patients) that he believes by next scan I will be in "complete remission".  

I can still feel the tumor in my groin (as it was very large) although it does feel a tad smaller than before.  Can you still have tumors and they are not active?  Are they dead?  Do they disappear in time?  If mel returns, does it return to those original areas affected first or it doesn't matter? 

I am having such a hard time wrapping my head around all this. 

Karin

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Karin L's picture
Replies 3
Last reply 7/16/2011 - 3:50am
Replies by: Kim K, ChrisB, Rocco

I finished round 4 of IL 2 treatment 4 weeks ago and within the last few days have been losing much hair.  I realize this is a less common side affect of treatment, but I wonder if anyone knows if it certain to be complete hair loss or extreme thinning? 

Thank you for any and all replies in advance.

Karin

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Rendergirl's picture
Replies 2
Last reply 7/15/2011 - 2:35pm

Probably a silly quesstion, but are there any special concerns if we get an ingrown fingernail on an arm with previous lymph node removals?

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Bruce in NH's picture
Replies 15
Last reply 7/21/2011 - 8:36am

Just thought I would post my latest setback in trying to enter a T-cell targeted therapy clinical trial at NIH. NIH requested CT scans and brain MRI last week. After over 10 years of brain-free mets, I got the surprise of my life. Opinion of radiologist: " Multiple bilateral cerebral hemispheric metastases." Initial count is greater than 10, which exceeds the NIH acceptance criteria by at least 7 (3 or fewer mets with none greater than 1cm. in size). The report is preliminary so there is little to no detail on size but mets appear scattered from front to back primarily on the right side. I have had no headaches or brain fog to alert me to a problem, which makes the diagnosis that much more frustrating.

So I start a new journey into the unknown. I've done some research on brain mets but would appreciate comments from those of you familiar with multiple brain mets, specifically what questions I should ask the radiation oncologist when we meet next week for a consultation. It looks to me like my only option is Whole Brain Radiotherapy (WBRT). If you or your spouse/partner/family have had experience with this treatment, would like to know what to expect in the way of side effects. I'm sure they vary from patient to patient but for now I have to start somewhere. Thanks for sharing your experiences in advance.

Bruce in New Hampshire

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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carol b's picture
Replies 8
Last reply 10/4/2011 - 3:40am

well, my tumor HAD shrunk enough to do surgery but once again they keep putting off my appointments, I called and told the it was growing back fast on July 5 , But since then it has gotten as big if not bigger than the last time, Each time it grows back it grows faster. Now i have little pimple like things growing on the outside of the skin,, there is 6 of them, i figure they are small tumors because they are growing too. The redness is growing back to,, i was told that is tissue death, Its all the way up my shoulder now, which was never there before, I have it all in my boob and it is swelled to the max and the nipple is turning yellow. Its also spread across my chest, it always stopped right in the center of my chest but this time its spread to half of my other boob,,,i got to  go to vandy Monday to see the surgeon , i pray they just jump in and take out this monster before it kills me but they seem to be taking their sweet time. guess thats my update,, no good news to tell about but i wish i did,, i will comment when i get back from seeing the surgeon Monday to let yall know what he said,, praying for you all always.

Carol B

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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amansinne's picture
Replies 2
Last reply 7/13/2011 - 6:50pm
Replies by: amansinne, MichaelFL

Sorry to make my question so specific, but I was just sent my records, including test results, from my dermatologist and I came across the following for a mole I had byopsied a while back: "compound melanocytic nevus with architectural disorder and mild cytologic atypism of melanocytes (dysplastic nevus, mild)"

Yikes! Can anyone tell me what this means?

Thanks in advance for any help!

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mygirlmaddy's picture
Replies 9
Last reply 8/17/2011 - 2:00pm

My husband is stage IV with 3 subcutaneous and1 internal tumor.  We have tried IL-2, Ipi, he is B-Raf wildtype, and does not qualify for TIL due to a steroid dependency thanks to side effects of the Ipi.  He is undergoing radiation to try to shrink the tumors and our oncologist at home is recommending Temodar after radiation is done.  She has been clear that neither radiation or Temodar are consider cures.  Does anyone have suggestions about treatments not mentioned here?  I am at a loss.  My husband's records have been sent to NIH by our oncologist in Boston  and came back with no suggestions.  I don't want to look back at this and feel like we didn't do everything we can.  I can't think of a more knowledgeable bunch than those of you in the thick of it with us.  Thanks for any suggestions.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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TracyLee's picture
Replies 2
Last reply 7/13/2011 - 3:42pm
Replies by: nicoli, Carol Taylor

Hi y'all,

Anyone else have little "zit" type bumps, extremely painful, that send burning zaps up your head?

Onc doc says it's melanoma attaching to nerve endings (lots of surgery in that area).

Hurts like the devil! Taking Neurontin to "calm" them down, and Oxy for pain.

Terrible time trying to sleep, just call me Sleepless in Delaware!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Hey everyone,

 

My father in law was just diagnosed with Stage IV melanoma by an oncologist in a small town in Idaho. This oncologist is not a melanoma specialist and seems to have missed some of the big steps in the process- they have no idea where the origin of the cancer is but they know that the tumor in his shoulder isnt the origin. Also they have only done a PET scan- no other tests and they are telling him that they are going to recommend Yervoy but just to wait to see if his insurance will cover it, etc,.

Anyways my uncle is a Stage IV melanoma survivor after IL-2 at Roswell and my aunt has suggested that the first thing he needs to do is get a second opinion from a melanoma specialist in a big city so we are looking for doctors in Southern CA where we live for him to see. Right now we are looking at Dr. O'Day at the Angeles clinic and Dr. McClay at Pacific Oncology but if anyone has any other recommendations for melanoma specialists we would really appreciate it.

 

Also we really are at the start of this whole thing and my uncle's cancer treatment was 10 years ago so if anyone can give us some of the questions we should be asking at the specialists office or anything we should be expecting?  Any info would be very helpful

 

Thanks!

 

Julie

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Replies by: jim Breitfeller

Hey everyone,

 

My father in law was just diagnosed with Stage IV melanoma by an oncologist in a small town in Idaho. This oncologist is not a melanoma specialist and seems to have missed some of the big steps in the process- they have no idea where the origin of the cancer is but they know that the tumor in his shoulder isnt the origin. Also they have only done a PET scan- no other tests and they are telling him that they are going to recommend Yervoy but just to wait to see if his insurance will cover it, etc,.

Anyways my uncle is a Stage IV melanoma survivor after IL-2 at Roswell and my aunt has suggested that the first thing he needs to do is get a second opinion from a melanoma specialist in a big city so we are looking for doctors in Southern CA where we live for him to see. Right now we are looking at Dr. O'Day at the Angeles clinic and Dr. McClay at Pacific Oncology but if anyone has any other recommendations for melanoma specialists we would really appreciate it.

 

Also we really are at the start of this whole thing and my uncle's cancer treatment was 10 years ago so if anyone can give us some of the questions we should be asking at the specialists office or anything we should be expecting?  Any info would be very helpful

 

Thanks!

 

Julie

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MariaH's picture
Replies 8
Last reply 7/13/2011 - 10:51pm

Dave and I met with Dr. Kushilani at Roswell today.  Very articulate, intelligent, and personable.  Went very well.  He offered up every option I have researched and even encouraged us to think "outside the box" of melanoma treatments (I.e. clinical trials).  After research, and speaking with all of the clinicians (including the surgical onc who did Dave's LND, who Dave has great respect for) I think Dave is leaning towards IL-2.  He is very healthy with metastases to the paratracheal lymph nodes only, and it really is the only treatment showing complete response in any percentage of patients.  He is healthy enough now to try it, where as if his disease progresses, he won't be.  If IL-2 fails, then he recommended IPI, and if that doesn't work, his tumors are being tested for B-RAF.  I have contacted NIH about the trials with TIL and IL-2, but they are only available if he has failed a prior treatment. 

I am curious though, has anybody heard of radiation prior to IL-2?  I could have sworn I heard of at least a trial which was promising.  If any of you know of this, can you let me know?  I have heard that it increases the chances of an IL-2 response.

Best wishes to all the fellow Mel Warriors,

 

Maria & Dave

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Harry in Fair Oaks's picture
Replies 7
Last reply 7/13/2011 - 2:00pm
Replies by: Harry in Fair Oaks, Anonymous, dawn dion, jneubert02

...at my appointment at the Angeles Clinic.  Everyone said the same thing:  He is definitely still with the clinic, and he is on "indefinite leave."  I was told to still consider him my physician of record. 

The appointment marked the end of my 8 weeks on the GSK BRAF/MEK trial (I was randomized to the most amount of both drugs).  I am very happy with the results of the latest scans:  They can't find any trace of the sub-Qs, and all the bone mets appear to be smaller!

I'm also happy that the side effects have abated.  No more fevers or chills for the last 3 weeks.  Perhaps just some fatigue now and then.  My nurse told me that taking the BRAF and MEK together seems to lessen the effects of the dugs taken by themselves.

Best wishes,

Harry

 

 

 

Too ugly to die!

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We'll be hosting a patient symposium in Chicago, IL on October 1, 2011 if you are in the area.  The tentative agenda has just been posted.  Let me know if you have any questions!

http://www.melanoma.org/get-involved/1st-annual-chicago-melanoma-patient-symposium 

Shelby - MRF

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