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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rick1981's picture
Replies 4
Last reply 12/1/2014 - 4:33am

Hi all,

After the Stage IV melanoma diagnosis in early June (2 days after our daughter was born), my wife has been put on the BRAF/MEK combo with immediate results: the skin lesions disappeared in days, the first scan in August showed a significant reduction in tumor load and in October the PET scan was fully negative. We had hoped to be on our way to NED or at least to have a long run on the combo.

However, our MD called yesterday to let us know both LDH and plasma (experimental test to identify resistence against the combo) signal disease progress. We'll see him tomorrow and then have a scan early next week.

But it seems like the combo only lasted 5-6 months (high LDH values apparently correlate to a short impact period of the combo) and we're on to immunotherapy.

In principle that's not a bad thing, but it just produced a big dent in my wife's optimism and strength. She was convinced that with the combo, cannabis oil, supplements, yoga etc she would beat this thing against all odd. It's still possibly, but we'll have to move to Plan B and I'll do all I can to bring back her positivity and we'll keep fighting.

Will keep you posted,

Rick

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sgrain's picture
Replies 13
Last reply 11/30/2014 - 9:25pm

Hi all,

It's been a while since I posted or have read the board but in 1999/2000, I was an avid follower and it was (and is) such a great source of information and support.  In 2000, after 6 cycles of Bio-Chemo (legha protocol), I was declared NED and remained so until Feb 2012 when a lung nodule showed up.  Following surgery, I was again NED for another year, then tumors in both right and left lungs.

I have tried Ipi, Zelboraf, Dab/Mek combo, and most recently, PD-1.  The only treatment that even partially worked was Zelboraf which killed the tumors in my right lung so now I am only dealing with left lung nodules and a couple new ones that popped up in the middle of my chest.

I have an appointment at Mayo Clinic in Rochester, MN on Monday, Dec 1 and it looks like they have a couple of trials available but they are phase 1 which I'm leary of.  The other option that I haven't tried is IL-2 but that scares me.  

A couple questions for you:

1) If any of you have done the high-dose IL-2, how brutal was it and did it work for you (or not)?

2) Are there other trials or treatments that others in a similar situation as me are considering or participating in?

I so appreciate all of your wisdom and support and hope I can contribute more to the board with my experiences.  Thanks again and good luck to all fighters out there!

Sandy Grain

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jenny22's picture
Replies 12
Last reply 11/30/2014 - 6:25pm

HI,

I am hoping that I will gain knowledge, and support from others in this forum.  My husband just passed his 5 year mark from Stage 3 lung cancer.....I am hoping I too can say that one day.....although today i received some lousy news.

I could really use some words of encourgement or thoughts from those of you in similar situations.

Here is my story:

Sept- 2013-  Ok, I'll come clean here....I had decided to treat myself to some cosmetic surgery......i had a face lift and during the pre-op appt i asked the Plastic surgeon to remove something on my neck......never thinking it was anything, since i go to the DERMATOLOGIST regularly, every 3 months due to my history. 

When I went back for my first POST-Op appt, i was told that what he'd removed was 1.5mm melanoma.....amelanotic.....though the normla protocol would ahve been to have sentinel node biopsy I was told i couldnt have one since all the lymphatic drainage patterns in my neck would have been too greatly altered....I saw 3 surgical oncologists and ALL told me based on the size it was a very low risk that would have gone into a node....so I ahd the WLE and have been following up with SLOAN in NYC with ultrasounds of my neck every size months......Just passed the first year mark and all WAS ok.

Lst week i felt 2 small pea size lums under the skin on my neck....in the ame spot as the original one and about and inch or 2 away. Today I received the phone call confirming they were both Melanoma.

I was devastated when told that made stage 4A.......from stage 1 to 4.....skipping all in between.

Tomorrow I am having a brain MRI, followed by CTs with contrast on NECK, CHest and Abdomen on Wed.

Then scheduled to see surgeon and oncologist next wed and thursday.

I am not reading the statistics as i know they are grim and very old, before the new drugs recently approved.

BUT it would very helpful if i could hear a few longer term STAGE 4 survivor stories.....of course i don't know yet if it has spread beyond these addtioanl skin mets, but of course hoping for good enws after scans.

Hoping to hear from someone!

thanks,

janet

 

 

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Jubes's picture
Replies 5
Last reply 11/30/2014 - 12:09pm
Replies by: arthurjedi007, Jubes, Linny

I have been diagnosed with  stage IV in my lungs and lymph nodes and the doctors can't find the primary. In 2005 I had an amelanotic hutchinsons freckle removed. I had had it on my left upper arm for 2 years and various Drs told me it was nothing until I changed dermatologist. By then it was about two inches diameter        After that I was checked regularly for new melanomas and the dr always checked the glands in my armpits but that was it. Is it possible that I have had this melanoma for the past 10 years? My current oncologist thinks it unlikely that hutchinsons freckle was the primary but just wondering if anyone else had had that type of thing?

thanks

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arthurjedi007's picture
Replies 11
Last reply 11/30/2014 - 12:06pm

I was wondering if there is anything I should know before getting a port? Basically I understand it is a minor surgery. They put the thing in under my skin. It attaches to a vein that they said goes to my heart. It's under the skin so no problems with showering and things. After the surgery heals there should be little risk of infection. They can puncture the silicone thing hundreds of times so I can get my medicine and blood work that way now. It's just a little bump under the skin.

Just wondering if there is anything I should be concerned about getting a port? I also plan to have radiation to my left collar bone and left shoulder tumors. I don't know if the collar bone tumor would be in that area where the port is and could cause problems with it or not. Or I guess according to the wikipedia picture it would be further down but not sure.

I've only had 10 doses of pd1 but combine that with 4 doses of ipi and countless blood draws and scan sticks they have a really hard time getting the iv in for my pd1. They did get it the first try today but it hurt like crazy and would still hurt if I hadn't taken my pain pills for that, my leg and shoulder pains.

Artie

 

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Jubes's picture
Replies 5
Last reply 11/29/2014 - 9:54pm

HI All,

Has anyone who is on Pembrolizumab or Nivolumab noticed any changes in their memory?

I have had 4 cycles of Pembrolizumab and am feeling really good. I have previously done Dabrafenib and Ipi and the tumours increased in size on both of those. I am stage 4  in my lungs with unknown primary. Recently I have noticed that it sometimes takes me a few minutes to remember what i have been doing in the last couple of days. The drug company does not list any such neurological side effects, so it is possibly unrelated or stress related, or that I am not at work with my usual schedule. Just wondering if anyone else has noticed anything similar?

Thanks

Jubes

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Anonymous's picture
Replies 14
Last reply 11/29/2014 - 5:31am

Hello. I am two months removed from a left groin lymph node dissection. I wear a compression stocking every day, elevate my leg when it feels tired and often when the stocking is off at night, will use a wedge to elevate my leg further.

The lymphedema specialist I am seeing says my leg looks very healthy. It is still early to determine if I have any sign of the beginning stages of Lymphedema. My left leg compared to my right (from my ankles to my upper thigh) are within 3 cm or less of one another.

For those who had the groin dissection, is the compression stocking a permanent item to be worn 24/7 or has anyone been able to find proper management to where they can go without the stocking or to something a little less conspicuous like a compression sock? I understand there is no reason to wear one while I'm working but I certainly would like to spend my free time without one.

The second question is this. We've recently purchased a hot tub, mainly to provide relief to our tired muscles and backs. Has anyone with the dissection told specifically NOT to use a hot tub. I've had mixed opinions from medical experts, some say it should be fine, some say avoid it like the plague. Has anyone here used them since their dissection? Experiences?

thank you

 

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gaby's picture
Replies 1
Last reply 11/27/2014 - 1:15pm
Replies by: ltalley
You always gave me their support in difficult times so today I want to share this good news. Today we visited the oncologist with the result of SCAN, and everything is clean !! Thankfully, my husband two years and four months which is NED ago. Also my husband could finish with pegylated interferon tramiento, so now let's try to do a little more normal life.
 
We live an  emotional roller coaster. From diagnosis in June 2012 my husband had 38 years, everything was very difficult, but he's a fighter, and decided to make interferon for two years. He had several questionable PET and suffer much distress but thank God the beast yet to return ....
 
Greetings and thanks for the support.
 
gaby

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gaby's picture
Replies 3
Last reply 11/27/2014 - 12:29pm
Replies by: gaby, michaelinsocal

Hi, I'm very afraid again. Tomorrow my husband  (stage 3A for now, and 40 years old) has the horrible semester Scan (TAC).

Two weeks ago my husband ended two years of treatment with pegylated interferon. They were two very difficult years .... But he  finally finished the treatment,  now we  have to pray that the beast does not return.  Let's try to find a normal life again.

I have a lot of anxiety for the TAC. Please God help us ...

Regards.

Gaby

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ltalley's picture
Replies 1
Last reply 11/27/2014 - 11:48am
Replies by: _Paul_

I just wanted to say I'm thankful for family, friends, and this forum, and for being alive today. I know so many of you are going through terrible and difficult times, but I wanted to say stay strong, love every day, fight hard, and win!! Win for us, win for yourselves, and win for those of the future! May God give you peace, happiness, and endurance, but above all may He give you complete healing in mind, soul, and body. May Every One Have A Wonderfully Blessed Thanksgiving Day with lots of laughs, love, and memorable moments. And promise me no matter how sick you are or bad you feel that you will smile, just smile. Love to all!!! heart

Living Life!smiley

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/26/2014 - 2:44pm
Replies by: Jubes, Happy_girl

HI Everyone,

I am a stage IV patient currently NED 13 YRS AND 9 MONTHS  MPIP was a saving grace for me for sooooo many years and I hope all of you will find the love and support I found here.  I am still in touch witih many patients and caregivers I met here  We formed a bond of a lifetime together,

MPIP is a place to find a WEALTH OF INFORMATION,,  IF you have any questions ask JANNER or Jerry from Fauquat,  They know more than most doctors  lol  not kidding,  

Please do yourselves a favor and start the chat room going again, It was incredible support.  I am now on FB as well and I love love love beign there,  All of that being said...... THERE IS NO PLACE LIKE MPIP  You will get to know one another, your stories, your journey and you will form friends for a lifetime  

As difficult as Melanoa is , please look for the gifts,  there are many,

MELANOMA BROUGH BE TEARS

MELANOMA BROUGHT ME FEARS

MELANOMA BROUGHT BE SORROW

MELANOMA BROUGHT ME PAIN

MELANOMA BROUGHT ME HEARTACHE

MELANOMA BROUGHT ME ANGST,

MELANOMA BROUGHT ME ISOLATION

MORE IMPORTANTLY

MELANOMA BROGH ME SMILES

MELANOMA BROUGHT ME LAUGHTER

MELANOMA BROUGHT ME JOY

MELANOMA BROUGHT ME COURAGE

MELANOMA BROGHT ME STRENGTH

MELANOMA BROUGHT ME FRIENS

MELANOMA BROUGHT ME LOVE

MELANOMA BROUGHT ME FAITH 

MELANOMA BROUGHT ME BLESSINGS

MELANOMA BROUGHT ME PEACE

MMOST IPORTANTLY 

MELANOMA BORUGHT  ME THE OPPORTUNITY TO MAKE AMENDS TO THOSE I HAVE HURT

MELANOMA BROUGHT ME THE OPPORTUNITY NOT TO LEAVE ANY UNANSSWERED QUESTIONS FOR MY CHIDLREN

MELANOMA BROUGHT ME ACCEPTANCE

WHAT MORE COULD I ASK FOR

BIG HUGS EVERYONE.

LOVE AND LIGHT

CAROLE K 

STAGE IV  iT'S A BEAUTIFUL DAY!!! I OPEEND MY EYES TODAY!!!!  

 

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_Paul_'s picture
Replies 0

My sister is a family Dr. in Ontario, and she was visiting me last week. She suggested that I research palliative care now when I am still not feeling symptoms from the cancer. I thought palliative care was the same as hospice, but she said they were different, with palliative care more about pain management and quality of life.

I groveled around the SCCA website and they had this reference to a study that shows that patients receiving palliative care actually lived longer: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678.

I would love to hear your experience with it.

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Anonymous's picture
Replies 5
Last reply 11/26/2014 - 5:53am

When I was first diagnosed with melanoma (stage 3a) 12 years ago, when my 22 year old daughter was 10, I remember scanning this wonderful support forum for hopeful messages.  I thought it useful to remind people that many of us stop visiting this website as time goes on.  I had my second melanoma (caught early because I continue to be monitored )9 years ago.  I am not complacent as the future for all of us is unpredictable, yet it is important especially for newbies to know there are many like me out in the world. 

 

Jackie

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Jewel's picture
Replies 16
Last reply 11/26/2014 - 12:36am

Hi,

My husband started Yervoy on Wed 11/19. Can you please tell me how long it took for you to experience side effects? Were they able to be contolled by medication? So far my husband feels fine. Thank you so much

Jewel

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