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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AlisonC's picture
Replies 1
Last reply 12/15/2011 - 11:12pm
Replies by: lhaley

I was reading Lisa's post and wishing for the same for my friend David here in Singapore.  He is only 8 weeks post diagnosis of 3 brain mets (almost 3 years post stage IIIA) and he's having a really rough time.  He had a craniotomy for 2 tumours on Nov 1st and Gamma Knife on a 3rd a week or so later.  Since then he's had an awful time with bleeding, raised intracranial pressure and nausea/vomiting that have seen him re-admitted twice (and back at the hospital more than that).  It's brutal because I know he wants a great Christmas with his family and 3 young children. 

We have a satellite clinic of Johns Hopkins here in Singapore (which is where he's being treated) and he gets additional opinions from the Mayo Clinic.  Does anyone have any additional advice (even lifestyle, things to eat/drink that help) that might help him get through the pain and nausea ? and sleeplessness ?    They've done repeated scans and so far he remains NED (not counting the gamma knifed tumour which obviously is still visible) but he's just suffering such a lot.

Any advice appreciated and I'll pass it on....

AlisonC

StageIIIB

NED since 2001

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JoshF's picture
Replies 5
Last reply 12/16/2011 - 6:45am

I had been dignosed with what my oncologist felt was primary dermal melanoma....meaning there was no leison on my epidermis. It is very rare and has typically a positive outcome. That happened in April/May...I had surgery to remove leison out of right cheek as well as sln biopsy which came negative. I went for my bi-monthly checks and all has been well. Had a CT Scan of Chest and Neck in November which came back NED. At a suggestion I went to see another Melanoma specialist a few weeks ago who suggested MRI of brain and CT Scan of Abdomen & Pelvis. Will have results on Dec 19th....Dr also said he might recommend Interferon Alpha 2 or Leukine....as an adjuvabt treatment for 1 yr. This is a little freaky...anyone tell me more about this? This is scary but I want to do all I can to prevent this from ever coming back.

Let's work for better treatments....for a cure!!!!

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Lisa13's picture
Replies 11
Last reply 12/19/2011 - 12:42pm

It's been almost a year since I was diagnosed with Stage 4. I had great success with ipi on my lung mets and while on ipi, developed 2 brain tumours which were gamma knifed 6 weeks ago.

Tomorrow, we're hosting a holiday open house, I've been dancing with my 2 year old, running around the house cleaning, preparing and decorating for the holidays, laughing and enjoying life like I don't have cancer.. It's hard to believe that I have Stage 4 as I've never had a symptom or side effect since being diagnosed.   I know we never know what lays ahead in our future, but I do know I can't let this melanoma run my life.  When my friends and family I havn't seen for awhile see me, they tell me I look unbelievably amazing. My hairdresser just told me my hair was as healthy as he's ever seen it!  Attitude means alot in this battle. I think of someone like Lance Armstrong who had lung and brain mets and is still hear 10 years later without the cancer returning. Yes, he had a different cancer - but he had an advanced state of cancer and 2 brain mets which he knew was a bad prognosis.   That guys attitude and willing to try and beat the odds is motivation for me.

I have scans at the end of January which I'll be nervous about, but I keep remaining positive that this could stay away for a long time.  As for brain mets, some people on ipi got them during treatment, but havn't had another one come back for at least a year.  This is what I hope for me as well. 

Happy Holidays everyone.   I hope the New Year is filled with hope, new treatments, better stats, and continued good news for those who are responding to ttheir reatment. 

Lisa

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

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robbier's picture
Replies 11
Last reply 12/17/2011 - 3:14pm

Went to see my onogolist yesterday, still having issues with the recomendation of doing interferon alfa.  At the present time i am in remission according to the Doctor, there is no signs of cancer, so I having issues with doing something like interferon and the side effects.  So I amwaiting for the Dr. office to call me for my appointment with UAB (University of Birmingham).  This is just been a very hard decision.  Any suggestions from anyone would be appreciated at this time.  Thank You

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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deeczar's picture
Replies 4
Last reply 12/15/2011 - 9:34pm

Hi

Going to Md Anderson in a few weeks for isolated limb infusion..anyone  with experience with this? Any info helpful on what to expect ..Thanks Dee

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deeczar's picture
Replies 1
Last reply 12/16/2011 - 1:10pm
Replies by: Camp Host

Hi

Going to Md Anderson in a few weeks for isolated limb infusion..anyone  with experience with this? Any info helpful on what to expect ..Thanks Dee

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Sherb's picture
Replies 6
Last reply 12/20/2011 - 11:15am

Question for all of you...... My mom has stage 4 with tumors in her liver (5) and 1 (4cm) tumor in her messentary,and throughout lymph nodes . We are waiting for the results of BRAF. She has been having stomach pain each day, multiple times a day and then vomits every other day and then feels a bit better. Anyone have a guess as to what could cause this? This has been going on for 2 weeks. It is frustrating waiting for results. She has failed 10mg Ipi. Just waiting for results from BRAF so we can move forward and figure next step. Sorry for the rambling.

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fdess056's picture
Replies 3
Last reply 12/15/2011 - 12:49pm

Hi, all. I'm scheduled to start Yervoy after Christmas and would appreciate any advice or anyone wishing to share their experience with it.  I'm stage 4 BRAF positive with a 1.5 cm met on the tibia near the knee and a 2 cm met on the left lung.  Prior to this i was NED for 20 months  after surgery, radiation and interferon.   Thanks and Happy Holidays to all

frankd

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Anonymous's picture
Anonymous
Replies 0

Anyone has platelets fall as a result of Ipilimumab? If so, what was the treatment and was it long lasting?

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Hope Returning's picture
Replies 3
Last reply 12/14/2011 - 2:17pm
Replies by: JerNYC, Anonymous, FormerCaregiver

Anyone has platelets fall as a result of Ipilimumab? If so, what was the treatment and was it long lasting?

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Hope Returning's picture
Replies 1
Last reply 12/14/2011 - 5:28pm
Replies by: Anonymous

I read a post that someone made contact with Dr. O'day. Is there a way to consult with him on a urgent matter by phone? Where will he be? Anyone knows what happened to him and how come he didn't return to the Angles? Email is not suitable for urgent medical consultation, so is there any way to otherwise contact him?

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I read a post that someone made contact with Dr. O'day. Is there a way to consult with him on a urgent matter by phone? Where will he be? Anyone knows what happened to him and how come he didn't return to the Angles? Email is not suitable for urgent medical consultation, so is there any way to otherwise contact him?

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kjkaralekas's picture
Replies 12
Last reply 12/19/2011 - 10:56pm

Hi--

I was diagnosed with Stage IIIB melanoma (Sept 2011) when a freckle I had removed from my nose (Jan, 2011--melanoma) had spread to a lymph node under my chin (the sential node biopsy didn't work). My PET scan came back negative. I had the lymph node with the tumor removed along with 30 other lymph nodes on one side of my neck (Oct 14). The tumor was encapsillated and no other melanoma was found in any of the other lymph nodes. I was asked to be a part of the clinical trial (ippy/interferon). With only a 7% chance of it helping and the fact my tumor was encapsillated (no breakage around it), I am hoping this could be the end of it. My local oncologist along with my surgeon understand my not taking part in the trial. I'm going on the 50% positive side that the melanoma could be cured at this point. I will continue seeing my dermotologist & cancer surgeon every three months, my oncologist at Mass General every 6 months and my local oncologist every 4 months. I have been taking a tablespoon of lemon everyday, vitamin D, exercise regularly, eating the super foods and lowering my alcohol intake. I'm hoping this will work. Has anyone out there had Stage III melanoma for years with no spreading? I'm hoping I'm doing the right thing. Any info would be appreciated.

Kelly

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kjkaralekas's picture
Replies 5
Last reply 12/16/2011 - 9:57am

Hi--

I was diagnosed with Stage IIIB melanoma (Sept 2011) when a freckle I had removed from my nose (Jan, 2011--melanoma) had spread to a lymph node under my chin (the sential node biopsy didn't work). My PET scan came back negative. I had the lymph node with the tumor removed along with 30 other lymph nodes on one side of my neck (Oct 14). The tumor was encapsillated and no other melanoma was found in any of the other lymph nodes. I was asked to be a part of the clinical trial (ippy/interferon). With only a 7% chance of it helping and the fact my tumor was encapsillated (no breakage around it), I am hoping this could be the end of it. My local oncologist along with my surgeon understand my not taking part in the trial. I'm going on the 50% positive side that the melanoma could be cured at this point. I will continue seeing my dermotologist & cancer surgeon every three months, my oncologist at Mass General every 6 months and my local oncologist every 4 months. I have been taking a tablespoon of lemon everyday, vitamin D, exercise regularly, eating the super foods and lowering my alcohol intake. I'm hoping this will work. Has anyone out there had Stage III melanoma for years with no spreading? I'm hoping I'm doing the right thing. Any info would be appreciated.

Kelly

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laurieformike's picture
Replies 3
Last reply 12/27/2011 - 7:44pm
Replies by: laurieformike, alicia

My husband started WBR today, while on the Zelboraf, they the Oncology Radiologist and the Oncology doctor both thought it would be okay! So now after reading on here, that it my not be a good idea. Going to call the Zelboraf Patient Support service tomorrow. We kept asking  to be sure they were fine with him staying on it. Oncologist said that not everything has been tested, but felt it was okay to be on it while doing WBR. Now scared for him, he's been through so much with the side affects, the throat swelling, seizer from Cyberknife(swelling),very fatigued all the time. Knowing that that will get worse with WBR.

I will be checking back in to up date anything new, the next two weeks will be very busy going to Stanford daily.

Hope you all have a nice Holiday season!

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