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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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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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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taron's picture
Replies 7
Last reply 11/29/2011 - 7:04am

Dear All,

I wanted to ask if anyone is aware of a succesful rechallange to a BRAF inihibitor.

There is one case in Europe in Belgium which is summarised here (see post from Quentin) but basically Quentin went from Braf inihibitors to ipi and back to inihibitors.  I am a stage 4 currently on Vemurafenib and obviously very interested in the whole resistance issue.

Given how new these drugs are there may not be that many people that have had a chance to try all these treatments so I decided to ask patients group if there are any other cases.  Sure the docs will write about these cases, but will they do that in time for me and my family?

So I would like to ask you to reply to this thread if you are aware of any such case where someone who had previously progressed on a BRAF or BRAF and MEK combo then managed, somehow to respond again.  

Thank you

Taron

 

Per aspera ad astra (I have to believe it!

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Doug-Pepper's picture
Replies 1
Last reply 11/18/2011 - 6:43am
Replies by: MariaH

Praise the Lord! Doug had an appointment @ CCI(Clearview Cancer Center) last week. Lymph nodes, blood work, & skin all looked good. He had a clear pet scan in Aug. & will have another one in march. I am so proud of how he has been taking better care of himself. Since diagnosis we have changed our diets, added supplements, & alkaline water. I also noticed that his skin has been much softer after we put a filter on his shower head. I figure it can only help, tap water is not always the cleanest. Anyone have any thoughts on having pet scans every six months? Praying for all who are affected by this horrible disease. Thanks for all of the support, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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Lisa13's picture
Replies 3
Last reply 11/18/2011 - 2:23pm
Replies by: kylez, momof2kids, Angela C

2 days ago was my gamma knife on 2 brain tumours.  Although the procedure was 1 hour and 20 minutes, I got through it okay with lots of anxiety meds!

Anyway, I've never had symptoms from the one brain met which was about 2.5 cm - the other 7mm.  The radiologist even said this was definately abonormal not to have symptoms, but it's a remarkable thing. Anyway, today, I have some slight pain around the area where my tumour would be and around the spots where the screws were. Would this slight pain be normal in the area of the tumour?  Maybe it's doing something right now that it wasn't doing lately, so it feels kind of strange.  I don't need pain killers so I'm okay - it's just a weird quick pain.  Anybody experience pain or sensations after gamma knife??  The pain comes on the top of my head, but my main tumour is deep down in the brain, so maybe it's pain from the radiation, plus screw holes in my head.

Any ideas, support, etc??

Lisa

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

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Wetterhorn's picture
Replies 3
Last reply 11/18/2011 - 4:50pm

Hi all,

Been a little while since I have posted, just thought I would give a quick update. I started Yervoy in July for a small liver met, about 5mm. I got through 3 treatments before experiencing severe headaches and low energy. Brain and Pituitary MRIs showed no evidence of disease, but docs thought the yervoy caused my system to attack pituitary and thyroid, so I was put on prednisone and thyroid medication. Turns out, thyroid levels and adrenal levels came back to normal after I stopped taking medication and I felt fine for a few weeks. 

Then, about a month ago, I began to feel quite nauseous almost on a daily basis. Some days worse than others. I called docs at Sloan and they didn't seem too concerned. It continues to linger however.

Has anyone else experienced fairly severe nausea after Yervoy? Just wondering if I should more concerned.

My lesion did not grow at all since it was originally detected, so at least that was good.

Thanks

Wetterhorn

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Hi Tam,

Was wondering how your husband is doing on the braf/mek trial at UCLA.

Wishing you the BEST!

Carol

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joy_'s picture
Replies 10
Last reply 11/19/2011 - 9:59am
Replies by: joy_, DonW, Anonymous, LynnLuc, lhaley, Janner, bradcope1

Hi everyone.  My husband and I have had BCBS (self-pay) insurance for years.  He was orginally diagnosed with melanoma in 2007 with a recurrance in 2010 and is currently NED.  BCBS has now priced us out.  We cannot afford the $1200/month payment any longer.  I have been told by various people that if we lose our current coverage, we will not be able to get future coverage or that no other insurance company will take us with his previous melanoma diagnosis.  Does anyone know if this is infact true or if we have any other options at all.

Thanks in advance for any insight or advice.

All the best,

Tracy

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TracyLee's picture
Replies 12
Last reply 11/24/2011 - 6:13pm

Hi y'all,

After 3 months, I'm failing BRAF. Lung refilled and had to be drained this past Monday, terrible arthritis in my right wrist kept me awake Sunday into Monday.

Dr. Peri is coordinating with Dr. Sharfman at Johns Hopkins. They are going to have me change my dose: high a.m., lower p.m. + low dose steroids for the pain in the joints.

I go back on 12/1 (if not sooner if lung re-fills, it could happen). Will have more info and another "plan" to move on, and get this damn melanoma out of my life.

 

I'm normally upbeat, but just feel totally flattened right now. There are so many who are in so much worse shape (I'm still working full time, and feel pretty good, actually), but today is my pity party.

 

TracyLee Stage IV

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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