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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Jan in OC's picture
Replies 8
Last reply 10/30/2010 - 3:00pm
Replies by: killmel, jag, Jan in OC, Anonymous, BethA in VA

Hi everyone, its been a busy month for us and I finally found time to get here!  

Last month Dirk started having vision problems...Dr at UCLA said may be a side effect of the BRAF drug (they have recently added two new ones that effect the vision).  We had to visit the ophthalmologist...his vision has change 3 diopters in less than a month...they did not find any sign of Uveitis or RVO, so we are scheduled for an MRI of the brain next week to rule out Mets.  We will revisit the Dr to closely monitor his vision in the next few weeks.  

We have been on Hoffman-LaRoche BRAF for 10 cycles (28 days each), and his last CT showed no change to his mets.  We are scheduled for another CT day before Thanksgiving.  Dirk also is going to Physical Therapy to gain more range of motion in his shoulders and try to get a little stronger.  He has been feeling very frustrated, can't see as well, can't reach for anything without pain, needs help getting dressed...so I have been working to get him help to improve those.

On the positive side,  he did get to go to his 35 year high school reunion last week!!!  And we are grateful that he is still with us to celebrate the coming holidays (last year Dr said it may be his last xmas, scared the crap outta me!).  Halloween is this weekend, he is using all of his lymphedema wrap to scare the kids as a mummy!  What fun!  He still has his warped sense of humor and we try to keep laughter in the house.

I will try to update after the MRI results are in.

Stay strong

Jan

 

 

 

 

 

laughter is the best medicine

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BethA in VA's picture
Replies 4
Last reply 10/29/2010 - 11:30pm

I am celebrating today...I am 6 years NED.  This is my second go with MM.   I was NED for 10 1/2 years before my 2nd MM, and am well on my way again.  Just wanted to give some happy news.  Celebrate every day and keep positive.  Good luck to all of you.  Beth  3/B

Melanoma tends to cut into your looks!!

 

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Gwen in Maine's picture
Replies 21
Last reply 1/30/2011 - 2:43pm

Hello Everyone,

I've been reading the forums for a few months now and am grateful for such a supportive place to post.

Here is my history. I've been dealing with Melanoma for almost 2 years now - diagnosed 2/09, at 47, with melanoma in lymph node on my neck, unknown primary. I had false positive spots, via PET scan, all over my body so they took time and biopsies to make sure it was only in my neck. Surgery in April to remove the lump and surrounding lymph nodes, diagnosed IIIc. A month later I had five sessions of high dose radiation to the area and a month after that, started 1 month of HD interferon followed by 11 months of low dose interferon. I got through it ok, but it was not easy. Ten months into the LD interferon, I noticed 2 small nodules at the midline front of my neck. They thought it might be scar tissue but took a biopsy and it tested postive for melanoma. I had surgery in August, 2010 and the margins were clear. Before all this happened I had never had surgery in my life and have always been generally healthy and active.

There aren't many treatment options for me at this point. So far I've opted for watch and wait with scans every 3-4 months. I've also focused on eating a macrobiotic diet, which makes me feel like I'm doing something. Last week I found out my latest PET-scan was clear, thank goodness. My doctor talked more with me about doing the Leukine treatment. From what I've heard, the data isn't solid about whether it's helpful or not. Basically if I did it, it would be for the sake of trying anything that could possibly help it from coming back and spreading. Right now I'm feeling great though, and am hesitant to start something  that might make me feel as bad as I did on interferon, for only a little hope it could help. On the other hand, I've read that the side effects of Leukine are not as bad.

I'd appreciate hearing from those of you who have tried Leukine and what you thought about it.

Thanks so much,

Gwen in Maine

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ValinMtl's picture
Replies 5
Last reply 10/28/2010 - 3:36pm

Flu shots are coming to town next Tuesday and all of a sudden I have this dilemna.  I'm on compassionate ipi, has anybody taking ipi be allowed to have a flu shot?  I'm going to try to get answer from the doctors in the next few days, otherwise, I think I'll have to pass on it.  Val

Live Laugh Love Nothing is worth more than this day!

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himynameiskevin's picture
Replies 11
Last reply 10/30/2010 - 3:29am

So I'm 5 weeks and 5 days out of IL-2. I got my CT scan on monday and discussed the results today. Sorry to say it, but unfortunately IL-2 wasn't my magic bullet (unless by miracle I'm some sort of late responder and it hasn't kicked in yet, which I've heard is possible... my fingers are crossed.. we'll see). Anyway, it turns out the tumors are still there, chest, back, lungs... They did say my liver appears to be clear, but it most likely just seems that way because of the CT scan, I guess it sometimes doesn't pickup certain tumors and an Intravenous petscan would be needed to tell for sure. They think I may have had a minimal temporary response because of the softening I felt in the mass on my back. But not enough of a response to strongly encourage another round. So we've discussed more options. Like possibly trying the IL-2 again, maybe Ipilimumab. I'm BRAF+ so we discussed PLX4032. And lastly, possibly seeing if I'm eligible for Adoptive Cell Therapy. So that's it. I wish I could say I was a positive responder, but hey, If I'm not, then there's a better chance that someone else on here is. So that's good. One thing I'm focusing on is that despite the numerous nodules in my lungs, I still feel fine, no breathing/physical problems, I ride my bike everyday have a very active lifestyle. Just hope this indicates I still have some quality time to find something that works for me.. I do have a lingering Itchy-throat cough I seemed to get after the IL-2, but appears to be fading as time goes by. And that's about it for now. I'll update as soon as something new comes up. Thank you all for being so supportive. You know how much it means. With Love, -Kevin

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MsKage's picture
Replies 11
Last reply 4/26/2011 - 6:02am

Hello -

SNB in April, one positive node.  Underneath the scar from that node, I had recurrent cysts which were repeatedly drained and surgically removed twice. Now there is a new, hard (bone hard) lump in the same place.

I had an ultrasound yesterday and the report says "highly suggestive of malignancy", nothing else. I am having a PET scan tomorrow.

I saw my surgeon today and he suggested that I wait and see what the PET shows.  Obviously, he will remove it if it is clearly suspicious on the PET scan. However, he suggested that if my PET is clean that I just "keep an eye on it".  He said he would be willing to do a needle biopsy if I really want it, but he's pretty sure it's just scar tissue from the multiple surgeries.

What do you guys think? Is he right about it likely being scar tissue?  Would you take that chance?  Should I demand to have it removed if my PET is clear?  Maybe I should wait to post until I know for sure what the PET shows, but I'm really anxious about this and I am worried that my surgeon is not taking this as seriously as he maybe should (he's not a specialist).  Then again, it's easy to get paranoid about these things....

 

Thank you in advance for any advice, and thank you for being here to help... this site is an amazing resource.

 

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Hello -

SNB in April, one positive node.  Underneath the scar from that node, I had recurrent cysts which were repeatedly drained and surgically removed twice. Now there is a new, hard (bone hard) lump in the same place.

I had an ultrasound yesterday and the report says "highly suggestive of malignancy", nothing else. I am having a PET scan tomorrow.

I saw my surgeon today and he suggested that I wait and see what the PET shows.  Obviously, he will remove it if it is clearly suspicious on the PET scan. However, he suggested that if my PET is clean that I just "keep an eye on it".  He said he would be willing to do a needle biopsy if I really want it, but he's pretty sure it's just scar tissue from the multiple surgeries.

What do you guys think? Is he right about it likely being scar tissue?  Would you take that chance?  Should I demand to have it removed if my PET is clear?  Maybe I should wait to post until I know for sure what the PET shows, but I'm really anxious about this and I am worried that my surgeon is not taking this as seriously as he maybe should (he's not a specialist).  Then again, it's easy to get paranoid about these things....

 

Thank you in advance for any advice, and thank you for being here to help... this site is an amazing resource.

 

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naty's picture
Replies 12
Last reply 10/30/2010 - 8:56pm

Hi I'm new here as of tonight.  My ftr was diagnosed with stage IV melanoma with mets in liver, spleen, lung, and brain.  I'm a nurse (peds so this is out of my league) so I have the family job of researcher.  He is to start whole head radiation tomorrow for 13 sessions and then follow up in 3 wks with his oncologist and see about starting temedor.  I did ask that he be tested for the BRAF mutation which the he obliged to do.  If he is negative what is showing some positive results?  it seems if you have brain mets (active) you tend to be excluded form most studies.  He's otherwise healthy! (or was he is going down hill fast and scaring me).  Not sure what other info may be pertinant.  Oh, he did 13-14mo's of interferon when he was diagnosed back in 2006.  I guess he should have started interferon shortly afer dx but he started 6mo's later so I guess that was for nothing?  I was looking at the vaccine program in Chicago but again brain mets and his tumor on his liver at this point I believe is too large.

thanks!  great site here for info and support!!

Melissa

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I was diagnosed with stage IV melanoma that spread to my lungs and my uterus. On October 5th I was hospitalized for one week and got 9 doses of the IL-2. Then i got out for a week and went back the week after and only got 5 more doses. I couldnt urinate no more and they said my body had enough. Im out of the hospital one week tomorrow and my PET scan isnt scheduled for at least 5 weeks. I was wondering what symptoms anyone had and when will I feel myself again. Im having spouts of hives...constantly going to the bathroom and cant sleep right...also did this work for anyone. Im 35, mother of two and afraid this might not work. If it doesnt does anyone recomend another option.???? Please help...Im scared as hell !!!!!!!!!

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Jim in Denver's picture
Replies 27
Last reply 10/30/2010 - 10:34pm

I just returned fro MD Anderson last night, and I have news to share.  My 12 week scans show no disease progression, and my numerous small lung tumors are shrinking.   I have one larger lung tumor, which showed some increase at 6 weeks, but has now reduced back to its baseline measurement before treatment started.  I asked Dr. Hwu if I am a responder, and she said yes. 

I had suspected that I might be responding after my 4th treatment because I developed significant rash and constant itch, and my one surface (leg) tumor showed a slight decrease in size and volume.   I had another Ipi infusion yesterday, and am doing the Temador for 4 days beginning last night.  Now I will go on "Maintainence", which means that I will go to MDA every 4 weeks instead of 3, and receive Ipi at 12 week intervals with Temador at 4 week intervals.  Scans will be done at 8 week intervals instead of 6 weeks. 

For those who may not know, I have been in the Ipilimumab plus Temozolomide trial at MD Anderson since August.  This trial is only at MDA, and is one that is using a combination of oral chemotherapy with high dose Ipi to see if the combination will work better than either drug by itself.  It appears to be working for me.  I was diagnosed as Stage IV with lung mets on March 15th, 2010 - this was my initial diagnosis, and this is the only treatment I have ever received.  After testing negative for the v600e gene (BRAF) at the U of Colorado and being told that I was therefore not eligible for either the Roche or GSK trials, I decided to look for other options.  MDA had been highly recommended by a number of people on this board, so I decided to go to there to explore other treatment options.  My experince there has been nothing short of incredible.

I cannot tell you how fortunate I feel to be sharing this information with you right now.  I do not feel like I am out of the woods yet, but I think I am on the right path.  I want so much to have others get treatmments that will help them, and the high level of interest in Ipi seems quite justified to me given my experience.  The combination treatment I have received looks very promising, and hopefully other combination Ipi treatments will be developed that will help many others with melanoma.  There are at least two others who post here who are also in this trial, and I am hoping so much that they will also show responses. 

At the same time I am feeling elated about my own situation, I am very mindful of the many others in this community who are working to get treatments that will help them.  From my time on this board and with this community, I always sense the presence of those who have gone before, those who are on this journey right now, and those who will be forced to travel this path in the future.  I feel incredibly humbled with the knowledge that I share the company of many fallen warriors, along with the many fighting so bravely right now. 

From the first time I posted here, I have been blessed to have received invaluable support and helpful information from so many of you - it has meant so much and continues to do so.  Words cannot express my gratitude to be able to know so many people from around the world who make this board such a special place for patients, spouses, family, and friends.  I will continue to post updates and to try to help others here in some small way, and offer information, hope, and encouragement.  We have a long way to go, but there are some rays of hope emerging from the dark clouds. 

Best Wishes,

Jim

 

 

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Springbok's picture
Replies 7
Last reply 10/28/2010 - 7:26pm

I am still somewhat in shock.   About a month ago,  a bleeding "pimple " on my arm was diagnosed as mel, Breslau thickness 2.6 mm, making me Stage 2 , I guess

There I was thinking I was very healthy, at age 61, and still pretty active - skiing, gym, riding my bicycle to work, and an aspiring, but totally inept, surfer. Little did I know that the nasties were at work inside me.

This web site has been extremely helpful in understanding both the medical aspects of the desease and the frame of mind needed to beat it.

Two questions I would like to pose to the knowledgeable who frequent this blog:

1. An SLN biopsy operation has been scheduled for next week.  If it turns out positive for cancer (and I hope not), standard medical practice seems to indicate that the next step is to take out all the nodes in the area. However, at the same time, reading some recent papers, I detect that the doctors are having doubts whether removing the nodes, other than the sentinels, does much good.  In fact there is a big study underway comparing the life expectancies of those who do a lymph node disection with those who don't.    Any thoughts?

2. I have been reading Alexandr Solzhenetsyn's book - Cancer Ward.  Its a fine , even perhaps great, novel (he got the Nobel prize after all), and lays out the reality of cancer.  In the novel he describes the curative powers of what he calls Chaga or Shaga, which is a mushroom that grows on dead birch trees in Siberia. His own experience with cancer relates to his time in a prison camp in Siberia where he developed stomach cancer. He learnt about Shaga from some of the local hunters, who brewed up this tea made from mushrooms for all their ailments. Solzhenetsyn claims it cured his cancer.  I found the stuff in a local Russian store and have been diligently drinking 3 cups of tea a day made with it. It is quite pleasant tasting, and ,as I discovered , is extremely high, in anti -oxidants. My question is:  Do any of you  have experience with Chaga and its curative powers with respect to mel?

 

best wishes

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bill58's picture
Replies 11
Last reply 10/29/2010 - 11:46pm

This darn disease.  Just had a CT scan yesterday in preparation for starting the BRAF trial on Monday.

They found mets in my brain.  Trying to talk to the radiation oncologist to determine next course of action.  Oncologist says I need to get the treatment within the next 7 days.  My vision has gotten noticeably worse over the past week so I thought either I need new glasses or something was up with this pesky disease.

Does anyone have any advice on brain radiation?  Hopefully it is only a few spots that they can treat with pinpoint radiation.

I know others on this board have received radiatoin treatment and wondered about the recovery time.  Will I have to be in the hospital for a while?  how long before I can go back to work?

I guess my plan A - BRAF treatment has fallen by the wayside. I wont qualify until the brain mets have been treated for 3 months, and by then the study will be closed, since I was one of the last participants to get enrolled in the study last month.

Here is to hoping for some good news one of these days.

A little down right now.  Could use any words of encouragement.

Bill

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

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dian in spokane's picture
Replies 1
Last reply 10/27/2010 - 11:56am
Replies by: Jim in Denver

Haven't seen a post from you in a while..just wondering how you are doing

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lhaley's picture
Replies 19
Last reply 10/29/2010 - 11:41pm

I just received an e-mail today frm Amy that Kevin passed away Oct. 17th at 12:45 am.  He had been able to go back to Virginia to see some family and friends and then the cancer took over.

 
 

Mr. Kevin McIlvane, age 48 of Mableton, died Sunday, October 17, 2010 at his residence. He is survived by his wife, Amy McIlvane; son, Sean McIlvane; brothers, Michael McIlvane, Harry McIlvane, James McIlvane, Charles McIlvane; sister, Annie McIlvane. Military Committal Service will be held Friday 2 pm at Georgia National Cemetery, Canton, GA. In lieu of flowers, donations are requested to the Melanoma Research Foundation. Send your donation to: Melanoma Research Foundation, 1411 K Street, NW, Suite 500, Washington, DC 20005.

 

Copyright 2010 The Marietta Daily Journal. All rights reserved.

Read more: The Marietta Daily Journal - MCILVANE Kevin

Many of us on the board got to meet Kevin in Chapel Hill.  Although the disease already had a grip on him he was able to get us all laughing and to give us hope.  He fought so hard, trying all kinds of drugs and combinations to win his battle.  His biggest concern was his son.  My heart goes out to this family.

Kevin helped many on this board. A true warrier.  A toast to you my friend.

Linda

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MichaelFL's picture
Replies 5
Last reply 10/29/2010 - 10:55pm

Hi everyone!

I am a little surprised today as this is about the same scenario that happened to me over two years ago now.

Due to my dads (and family) insistence, my 40 year old brother went in to a dermatologist a few days ago to have a mole biopsied on his back that "changed" My dad called me this morning to let me know what transpired, and low and behold, he said my brother just got the call this morning-it's melanoma.

What surprises me is that he really was not a sun worshipper as I was. I do not recall him ever having a sun burn and he never really went to the beach as I did as a child or adult.

I have to hand it to my dad, he probably saved both our lives as he "nagged" us both to see a derm.

I don't have any other details at this time. I will update later. At least we know what we are doing this time. I'll make sure he does not confuse Clarks Levels with stage levels as I did when first diagnosed!

Michael stage 1b-2 years one month NED.

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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