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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Terra's picture
Replies 4
Last reply 11/21/2011 - 8:21am

Hi

We had mid Oct scans that showed ipi was working - approx 50% decrease in liver disease - yet he is now feeling some consistent pressure on his lower left side again and the most recent scan did not involve his head where he had a tumour behind his eye (on earlier scan) - he is now thinking his eye looks slightly swollen and feel slightly oily.

 

Thanks for any possible answers - we more have scan in a month 

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H555's picture
Replies 7
Last reply 8/7/2013 - 7:28am

i'm just about to begin week 3 of high dose Inteferon IV and am totally whipped. it's all I can do to get up after sleeping 12 hours. i've started taking a nap within 2 hours of getting up. I've got no appetitie but am drinking protein shakes and peanut butter and toast. The meds are managing the side effects ok. i had a very high fever and severe chills after the first treatment but only slight chillls the following monday. my biggest challenge is appetite and fatigue. does anyone have any tips for getting thru the next two weeks? thankyou.

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Gene_S's picture
Replies 7
Last reply 11/23/2011 - 8:37pm
Replies by: bcl, EmilyandMike, AlisonC, mombase, deardad, Anonymous

The Surprising Cause of Melanoma (And No, it's Not Too Much Sun)The Surprising Cause of Melanoma (And No, it's Not Too Much Sun)
Research is uncovering fascinating theories behind the recent epidemic of the deadliest form of skin cancer, melanoma. What's more, the rise is only being seen in indoor workers. Especially if you work indoors, find out how to protect yourself and even cut your overall cancer risk by as much as 60%.

---------------------------------------------------------------------------------------------------

I'm a firm believer that the LACK of sunlight is one or possibly the sole cause of my melanoma.

I have previously posted info about Vitamin D and testing for proper levels. If interested do a

search using my user name.

 

Best Wishes,

Gene  (Stage IV, currently doing a clinical trial using Yervoy with gm-csf)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Lisa13's picture
Replies 5
Last reply 11/21/2011 - 7:51am
Replies by: lhaley, LynnLuc, Lisa13

Hi Linda,

Since we have pretty much the same size brain, I thought I would ask you a couple of questions:

What did your Dr. say about the 2+cm tumour?  Is there a high chance of it shrinking and even possibly disappearing.?  If so, what are the "odds" of that happening?

What were his options of treatment in terms of blood/brain. I remember you mentioning 3 things.

 

I really wish you the best of luck Linda, I truly do.  Having had gamma knife last week, I'm hoping over the next few weeks, I don't have symptoms, which to me would sound like bad news because I'd be scared of it growing. It's so hard to know if the ipi I've been on has created the tumour to get bigger because of inflammation. I often wonder because I've had no symptoms from a 2.5 cm tumour, that it's because ipi is doing something.  Nobody has any answers even though one of them has questioned the same thing. Radiologists sometimes don't know much about these drugs and melanoma in general, so I'm looking forward to seeing my melanoma oncologist at the end of the month.

Lisa

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

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JerryfromFauq's picture
Replies 4
Last reply 11/21/2011 - 12:44am

 i am NicOz's mum. we would just like to thank you all for your lovely thoughts re Nicole's passing. Sorry am not very computer literate could only get in to chat room using Nicole's name password ,to let you all know we are sincerely grateful,very special to us as well we all miss her so much  very special to us as well we all miss her so much         ..                                                                             

-hi wanted to let you know Georgia doing ok.

We all miss Nic so much. 

Thank you all so very much ,chatting with you all kept her strong.  Keep up the good fight , dare i say God bless you all,  

yes i know i would have traded places with Nic from the start as well.  l will keep in touch from time to time, try to see if can get new user name.   My son will help.

******************************

        Pam says Georgia is healthy and getting along well.  WE all know she has to really miss her Mother that she was so special to.

I'm me, not a statistic. Praying to not be one for years yet.

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Lori C's picture
Replies 3
Last reply 11/21/2011 - 12:00am
Replies by: LynnLuc, Lori C, WendyPam

A friend has contacted me with an urgent problem - a relative (21 years old) in Florida (Miami) has kidney cancer.  He is on "shared cost Medicaid" and is finding it almost impossible to get care.  She's asked me for resource ideas - I know of no better cancer resource than MPIP.  What should this young man do?

 

Thank you,

Lori

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Webinar November 28

1 pm (EST)

 

Therapies for Melanoma of the Eye 

Richard D. Carvajal, MD

caravjal

 

Dr. Carvajal is a medical oncologist at Memorial Sloan Kettering, with a special interest in the treatment of melanoma and sarcoma. His research is focused on the development of new targeted drugs and immunologic therapy against these diseases, and currently he is researching therapies for melanoma of the eye. He received his M.D. from New York University with a fellowship at Memorial Sloan Kettering.

 

Please email all questions for the doctor to: cpoole@melanomainternational.org by November 25, 2011

 

System Requirements

PC-based attendees

Required: Windows® 7, Vista, XP or 2003 Server

 

Macintosh®-based attendees

Required: Mac OS® X 10.5 or newer

 

Space is limited.

Reserve your Webinar seat now at:

https://www1.gotomeeting.com/register/889341536

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/21/2011 - 8:25pm

OK -- I am a newbie on this.  Is anyone willing to help educate a newcomer?  I was diagnosed on Thursday with malignant melanoma.  I recognize the seriousness; but have not yet become hyper-concerned.  Depth:  .35; Location: Neck; Clark's Level III; No Ulceration; Non brisk Lymphocytes; Mitotic figures 2 per square mm

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rbruce's picture
Replies 6
Last reply 11/24/2011 - 4:11pm
Replies by: rbruce, boot2aboot, LynnLuc, Anonymous, Charlie S, fgilbert63

So, I posted this about a week or so ago with the title Melanoma and viagra and did not get one response.  Is it because of the stigma of viagra?  I don't care what drug I take if it has the potential to increase my lifespan 2 fold like this research did in mice.  Viagra was originally meant for heart disease and they found it worked for ED.  Now, it looks hopeful for melanoma and yet no one would comment.  I don't get it.  The reason it's so interesting to me is that the drug is readily available.  Here's my original post along with a link to the study just completed in Germany.  Please take a moment and check out the link and comment.  Thanks,  Robert 

Has anyone seen this?  http://www.tgdaily.com/health-features/59537-treating-cancer-with-viagra  I heard in my support group that viagra was being used by some with breast cancer but this is the first time I've seen anything about it's use with melanoma.  I sent the article to my Oncologist at UCSF and he said for me to check with my trial coordinator to make sure it doesn't interfere with the Clinical Trial I'm on and then try it!  Has anyone heard of this? Does anyone have an idea of doseage?  It's obviously an off label use and I'm just wondering (please don't laugh) if I can take a low dose so as not to cause me to be have the full "Viagra" effect but have some therapeutic effect.  Anyone have info?    Thanks,   Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Wetterhorn's picture
Replies 3
Last reply 11/19/2011 - 4:08pm
Replies by: jag, lhaley, Fen

I posted recently about my nausea that has been somewhat constant for the past month, and after calling Sloan for the 2nd time on this, they want me back in for a brain MRI asap. Getting blood work next week on Monday and will be getting a brain MRI on either Mon or Tues. My symptoms have also included fast rapid twitches throughout my body, sometimes in my feet, sometimes hands or arms, most frequently in the head. This was first noticed a week or 2 ago. In addition, some dizziness and lack of energy has occurred as well. After reading a few posts, I hate to think that I now have a brain met, but unfortunately that is where all arrows seem to be pointing. I did have 2 MRIs done quite recently, late Sept and early Oct that were both clean. This was due to severe headaches, that were thought to have been caused by Yervoy.  Was supposed to go to Costa Rica for 11 days as well, leaving next friday, but that sure seems to be in Jeopardy. FML.

Wetterhorn

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LEEPOINTON's picture
Replies 12
Last reply 11/22/2011 - 5:48am

 

I was diagnosed  with ulcerated invasive malignant Melanoma on my back in may 2010,it was 1.2mm thick so was staged as a 2b,I had a wide local excision and no trace of melanoma was found in the removed area. I went for check ups every 3 months. In august 2011 whilst attending a routine 3 monthly check my consultant discovered a lump under my left arm. After a biopsy,  I was diagnosed with metastatic malignant melanoma stage 3b. I had a full lymph node dissection in september 2011.I am at current on a clinical trial so am on 6 weekly checks.I am fully aware of the seriousness of this disease but in an effort to reassure myself i do search the internet hoping to discover that melanoma is not always necessarily a death sentence, I have read numerous sites, mostly giving an extremely worrying  and bad prognosis for this type of cancer. I was wondering if any one out there has any good news stories of been years down the line having seen no reacurrance. I am only 42 years old and feel that  i am a sitting duck with a massive uphill battle on my hands,constantly worrying of another reacurrance with a worse prognosis is a living nightmare to me. Please please any positive stories or help would be much appreciated.

Regards Lee (stoke on trent, United Kingdom)

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Julie678's picture
Replies 9
Last reply 11/22/2011 - 10:55pm
Replies by: Julie678, Jessmoon, Anonymous, fdess056, LynnLuc

Hi, my husband has melanoma and we are getting conflicting opinions on radiation.  We are quickly learning there is no concensus on treatment when it comes to mel!  The brief history is my husband had a malignant mole on his back 9 years ago in 2002.  In 2002 he had a wide excision and a negative sentinel lymph node biopsy.  After 6 years of regular follow up he was let go in 2008.  This October he found a mass under his left arm-the same area as the SLNB in 2002.  On Nov 2 he had an axillary lymph node dissection.  There was only one involved node that measured 4.7cm with no extra capsulary extension.  Everything else was negative including the PET and brain CT. The surgical oncologist has a hunch that mel was missed on SLNB in 2002 and it is very possible they got it all during this surgery. The decision is ours but she thinks it would not be out of line to decline radiation due to the risk of lymphedema. We have seen a medical oncologist at Mayo and he is also very cautious about radiation.  The radiation oncologist believes radiation is worth the risk.  Any thoughts?  Mayo did recommend Leukine which we are very seriously considering.  The only other option we have found in MN is a head to head trial of IPI vs. Interferon.  We are not at all interested in Interferon and like the reduced side effects of Leukine.  Any guidance on Leukine or radiation would be greatly appreciated.

Thanks!  Julie

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Hi, my husband has melanoma and we are getting conflicting opinions on radiation.  We are quickly learning there is no concensus on treatment when it comes to mel!  The brief history is my husband had a malignant mole on his back 9 years ago in 2002.  In 2002 he had a wide excision and a negative sentinel lymph node biopsy.  After 6 years of regular follow up he was let go in 2008.  This October he found a mass under his left arm-the same area as the SLNB in 2002.  On Nov 2 he had an axillary lymph node dissection.  There was only one involved node that measured 4.7cm with no extra capsulary extension.  Everything else was negative including the PET and brain CT. The surgical oncologist has a hunch that mel was missed on SLNB in 2002 and it is very possible they got it all during this surgery. The decision is ours but she thinks it would not be out of line to decline radiation due to the risk of lymphedema. We have seen a medical oncologist at Mayo and he is also very cautious about radiation.  The radiation oncologist believes radiation is worth the risk.  Any thoughts?  Mayo did recommend Leukine which we are very seriously considering.  The only other option we have found in MN is a head to head trial of IPI vs. Interferon.  We are not at all interested in Interferon and like the reduced side effects of Leukine.  Any guidance on Leukine or radiation would be greatly appreciated.

Thanks!  Julie

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/21/2011 - 7:27pm
Replies by: patinkerbell2011, Anonymous, Rochester_Mike, Taiyla, Janner, paul

ALOHA!

 

Greetings from the sunshine state.

 

Does anyone know a good dermatologist in Ohau? I am having an issue with mine. I have had one primary, stage 2, 42 years ago. My appts are now once a year. I have not had another primary since my first mel. Knock on wood. My last dermatologist was very aggressive with my care and I was with him 22 years before he retired. Now, my new dermatologist is a "wait and watch" type of guy. My last dermatologist did at least 4-5 biopsies a visit, this guy, has not yet done one. I am not a huge fan of this "wait and watch" type of thing. I would hate to wait and having something turn invasive before I saw him next.  Is this a new type of practice? My last guy was a little old school. This guy used a flash light and even inspects between my cheeks! Poor guy. I have no idea what he wants to see in there, but it can't be pretty.

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I had my last derm appt this week. The derms say I am good to go. They removed the moles on my back with are harder to monitor and measured moles that need to be watched. Thankfully, a derm will be on base every three months, so if anything comes up, I can ask him. Dream come true if you want to ask me. I was very hesitant about asking my fellow jarheads to examine my back!

 

With that said, I would love to have your advice on one last issue. When it comes to watching for "change"....What characterists do you use to determine whether or not a mole is ready to be taken off? Two of the four suspicious lesions are already pretty dark, but have not changed for quite some time, therefore, we have left them. So, with that said, when it comes to change in color, that might not help. But do melanomas tend to grow? Or change shape? I know the ABCD's of moles, but that does not really help because all my moles are weird. And, how long is the "in situ" process. I am hoping to catch more moles in this stage, rather than stage 1. But is that even possible.

 

Thank you all for your help during this hard time in my life. I will have my wife give you updates. In fact, she would be more than happy to give updates. She said my attitude completely changed when I started talking to you all! Jared.

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