MPIP: Melanoma Patients Information Page

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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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Bugandi's picture
Replies 3
Last reply 10/4/2010 - 12:16am
Replies by: Cynthia C, Bugandi, paul


I had a recent PET scan that showed an 8 mm spot or uptake in my left lung, and am quite frankly, scared!!!!!.. I have had a couple of surgeries, but have been told that chest surgery is no walk in the park.  My oncologist discussed radiation as an option, anyone ever had radiation to the lung?s?  I go back in 2 weeks for a high resolution CT scan and then will have to make deisions as to how we are going to attack this.  I don't know what to expect, so any feedback would be appreciated.



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Bruce in NH's picture
Replies 8
Last reply 10/6/2010 - 2:15pm

Today is really a wonderful day. It seems like only yesterday that I was awaken by my wife at 4AM while on a business trip to Singapore, telling me that the mole I had removed prior to leaving was melanoma. Singapore is 12 hours time difference from my home in New England. I never felt so alone. But now I can celebrate 10 years of living beyond that day, thanks to God, wonderful physicians and medicines and great family and friends. I thought it important to share this milestone with those of you on the board who have recently been diagnosed with melanoma. There is a lot of support for you here, and we will try our best to see that you survive this disease as many of us have over the years. Take care, fight hard and have a wonderful weekend!

Bruce in NH

Stage IV since December, 2008

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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tonyrussell's picture
Replies 33
Last reply 2/13/2012 - 10:04pm


My wife just got diagnosed with Melanoma today.  Although the doc said he got it all out...i'm terrified.  We do have to go to a specialist to make sure it isn't in the lymph nodes but the prognosis is good.  However, I could use some positive input and stories.


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SandraDee's picture
Replies 23
Last reply 10/5/2010 - 10:14pm

Hi all:  This is Sandy - Buffalo.  I only changed my name b/c when the forum here changed, I was having trouble getting on so had to create a new user name. 

Anyways, my "free ride" pass seems to have expired.  The clinical trial (IMC1121B) that I started almost 2 years ago and that was keeping me stable has gone south!  So has my melanoma.  So, in addition to 1 worrisome tumor in the bottom of my right lung, as well as other, smaller tumors bilaterally, I am now dealing with a. 5cm x 6xm (gosh, it's so hard seeing those large #'s) "mass" in my small intestine.  It is causing me a lot of abdominal/back pain, as well as fever and anemia.  Hemoglobin this week was a mere 6.8, so I have had 2 units of blood infused this week alone.  Also got 2 earlier in the month, so apparently there is some type of internal bleeding going on, and the docs have yet to pinpoint the location.  Has anybody heard of mel sypmtoms (fever, body aches) responding to antibiotic?   The confusing part is that my WBC is skyrocketed (more than doubled in 2 weeks, and was high to begin with), as my RBC continues to decline.  However, on antibiotics, fever goes away and WBC comes down a bit.  So, my doc seems perplexed as am I have an infection on top of the new mel findings???  Sorry, I'm getting winded here.

I'm currently being treated at Roswell Park in Buffalo, and they are suggesting possible small intestine surgery (capsule endocscopy scheduled next week to determine location of bleed), followed by Temodar, hopefully followed by ipi.  IPI of course is very questionable due to entering that treatment with a compomised small intestine. I am going to Pitts to consult with Dr. Kirkwood on Monday and hope to get a few more options/clinical trials. I am also in the midst of BRAF testing.   Bottom line, I need to start on something fast!

Sorry I've been away so long, dear friends.  I am not one for change, and it took a lot for me to even figure out how to log on since the changes.  And, enough about me....blessings go out to Jerry, Kurt, Sharyn, JAG, (whose posts I've followed for 2 years now), King, Sue Kyser,  Charlie, Terra, James from Sydney and all of my other long lost friends.  Even though I haven't posted in months, I still check in on so many of you!


Sandy - Buffalo

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Julie in SoCal's picture
Replies 3
Last reply 10/2/2010 - 11:56am

Hi there Friends!

Just wanted to post and say that I just had scans again and all came back clear!  I'm 2 years past dx, one years past tx.  Life is good!

Doin' the happy dance!



SNB, LND, HD-INF, GM-CSF 11mo, NED 2 years

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Joan C's picture
Replies 3
Last reply 10/2/2010 - 12:36pm

He was a big producer of shows like The A Team and The Rockford files.

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skysar's picture
Replies 3
Last reply 10/2/2010 - 8:16pm
Replies by: Jim M., Jim in Denver, jag

I posted last week regarding the rash I developed either from IPI or antibiotics.  The 2nd treatment was scheduled for 9/29.  Doc decided not to give me IPI due to the rash but did give me the Temador.  My platelets are dropping so I have to have blood checked twice next week and we will go from there.  Rash is getting somewhat better so that is a relief.  Not feeling so hot today after taking two nights of the Temador.  I am on a total of 350mg.   Next treatment scheduled for 10/20 with tests this time.



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bluepeople's picture
Replies 14
Last reply 10/6/2010 - 2:43pm

So my hubby was diagnosed with stage 2b, 2c melanoma.  He had 2 spots removed, checked both sentinal nodes which were clear.  Still a little worried since one spot was pretty deep.  PETscan next week, crossing our fingers that it hasn't spread anywhere.  He is supposed to start high dose interferon in November, then the 11 months of maintenance low dose.  From those of you who have done this, and are stage 2, what was your experience?  I keep hearing that it is a year of hell, and that lots of people don't last the whole year for various reasons.  It seems that this is a proactive way to battle the cancer I guess.  I'm pretty freaked out since my dad died from melanoma in 2000 (although he didn't catch it till it was pretty advanced).  Are there other options?  Thanks for any input.


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Jaime.30's picture
Replies 8
Last reply 10/1/2010 - 4:56pm

Hello my name is Jaime and my husband is a melanoma warrior.  He was diagnosed April of 2009 with Stage III A Melanoma, which started as a flesh colored lump on his right ear.  He had part of his ear removed and had a radical neck dissection to remove 25 lymph of which was positive.  He went on to do Interferon for 10 of the 12 months when something showed up on a brain MRI and our doctors said Melanoma 90% sure....discontinue the Interferon and see a Neurosurgeon.  CT scans and a stealth MRI were done and there appeared to be 2 or 3 small lesions on the brain just above the ear where the primary tumor was.  Dr. says you are only 33, this is in a low risk area of the brain...we wanna go in and take it watching it.  He had a craniotomy on September 2nd and the results were shocking.  They removed a ping pong sized area of what turned out to be inflammation.  No Melanoma cells were found.  We are very happy about this of course but we do not know what is causing this and it is know to be associated with tumors.  The plan now is to wait keep rescanning the brain and hoping that nothing comes back.  The MRI right after surgery was totally clear.  After a couple weeks of using a walker then a cane my husband is doing well. He is not the same on the left side...weaker and a bit unsteady at times but doing so well. A friend of mine that I met on a Facebook Melanoma group suggested I look here for maybe someone who has had a similar situation.  Thank you for reading.  God Bless.

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Replies by: KatyWI

hello all,

I have basically only been reading the board ever since it switched styles.  So I am glad to be back on.

Finally I can say..I see so many have been suffering this summer and in my heart I suffer with you.

and it is painful every time a warrior gets their wings...

wearing yellow, living strong on October 2nd for cancer survivors worldwide and praying for strength and peace for all mm warriors out there....

I am hanging in and still stable 21 mos.

Diana W  3c

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-The melanoma fist was found when she was 25 and they cut it out of her lower leg.
-Now at age 55, it moved into to her limp nodes on the same leg.
-They surgically removed the limp nodes and she had a major infection to deal with for several weeks.
-After more biopsies and appointments they found that the cancer had moved in the form of a tumor wrap around her main artery in her leg.
-They gave her 6 months to live and told her there is nothing else they can do.
-I have heard of people getting through these things or at least having hope and living a longer healthier life then they would have if they had given up.  
-My main concern is finding somewhere that treats mind body and soul.  She needs to have someone to talk to who is positive and makes her feel better, and this has not happened.

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kinthai82's picture
Replies 3
Last reply 10/7/2010 - 8:32pm

Hello all,

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2010. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with another one of my classmates, would like to create a video on melanoma awareness.  I want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

If interested, please contact me via this post, email (, or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

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Bonnie Lea's picture
Replies 1
Last reply 9/30/2010 - 1:19pm
Replies by: Sherron

message on FB from his daughter.....He is a great guy and friend to me this "canadian friend" as he called me.  OH dear God please give him a safe passage.

Just Keep on Hanging In

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debbieVA's picture
Replies 9
Last reply 10/3/2010 - 10:15pm

MPIP family....

I got a call from Kurt's wife, Pam,  this morning.   This Warrior has been through so much.  

He has many friends here...and I just wanted you to send up a prayer for him and his loving family.  

Debbie Stage 4 NED

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Anonymous's picture
Replies 5
Last reply 9/30/2010 - 7:34pm

I have been on many different medicines for pain relief.

I am now faced with my insurance refusing to pay for long-acting OxyContin medicine that my Dr. has prescribed.

Today, I got a call asking me which of the following medcations I would prefer to try: Methadone or Fentanyl.

After a few brief questions, I was told (in the nicest way possible) that Fentnyl patch hasbeen shown to be ineffective in overweight people.

Which leaves Methadone.

I have never heard of anyone using this drug to treat cancer pain and am skeptical.


Any advice, opinions, or facts would really be welcomed and helpful.


I already take dilaudid for breakthrough pain and was taken off  MSContin due to how long I had been on it.


Thank you!

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