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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ipi in DC's picture
Replies 11
Last reply 11/1/2010 - 6:10pm

Hey Everybody,

Just got back into town from my scheduled scans during Ipi/ temador trial. As Jim I was enrolled in the trial in August, we are on the same weeks. The scans showed an  aprox. 25% decrease in all lung nodules and the nodule on lower back has decreased by atleast  half.

I also feel so lucky to be responding to the treatment, but yet guilty because so many others are still working so hard to find something that works for them or the same trial and not responding. It makes me very humble to be so lucky, (why do I get to respond and not everyone else).

I agree with Jim that we are not out of the woods yet, but it was so nice to have the staff come in smiling with good news. There is still a long way to go and a possibility of more side effects that can be very nasty. I do have a major rash that started the first infusion but has increased each infusion. The rash went nuts the 4th infusion and a constant itch over my intire body that just seems to walk from one spot to the next. It really seems to go nuts in the middle of the night. Unfortunately Benadryl doesnt work for me and never has. The Hydroxyzine seems to take the edge off, and I have found that Green labeled Gold Bond lotion and powder seems to be the best for me. The lotion makes you feel like your freezing cold until it dries.

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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Andrew Langsford's picture
Replies 11
Last reply 11/1/2010 - 11:25am

I have had DCIT recommended to me by an oncologist. He said that after 2 doses he can tell whether it is taking effect or not.  Has anyone had this advice, or a good experience with DCIT?  The ipi would be the next thing, but it has come with a warning of drastic side effects to the bowels, anyone experience this?

Thanks for any help and experience.

 

Andrew

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mrsmarilyn's picture
Replies 9
Last reply 11/1/2010 - 4:08am

Hello-Everyone.  Just want to say my brother Gary is at his 9 month mark on GSK Braf-all METS almost gone.  Even one on his lung.  He has been invited to speak at a group of researches in Nashville-based on his progress.  How is anyone else out there doing on GSK Braf?!  He was asking me to share the good news and see what the progress is of anyone else out there.  Before he went on GSK Braf- Mets were going out of control.  He will continue on - and my best wishes to all - thank you again for any feedback!  Feel free to email direct.

MrsMarilyn

Sister of Gary (Stage IV)

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brownie's picture
Replies 8
Last reply 10/31/2010 - 3:55pm

I had my pet scan done at Mayo in Jax. Fla. yesterday and, Thank God, they were clear.

IIIc for a year now.

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Jerry from Cape Cod's picture
Replies 9
Last reply 10/31/2010 - 11:25am

Hello All,

I just recieved a call from Buddy's wife Nancy.  After a month in John's Hopkins Buddy has entered hospice where he is resting comfortably.  Please send your thoughts and prayers to Buddy, Nancy and their family. 

Nancy posted here and at the old site frequently, recently the care of Buddy and the family orchards have required all of her time and energy. 

I'll forward all posts to Nancy.  Also, if you'd like to send an email to Nancy please send it to me at jerry@JerrySullivanCapeCod.com and I'll forward it off to her.

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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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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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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CONCLUSION: CONCLUSION:
1. Focus of hypermetabolic activity in the questionable focal skin
thickening in the region of the left armpit. Significance of this is
uncertain. Clinical correlation is recommended.
2. Focus of hypermetabolic activity in the focal skin thickening of
the left suprapubic region. Clinical correlation is recommended.
3. Focus of mild hyper embolic activity in the region of the right
anterior chest which probably represent normal physiologic activity.
Correlation with mammography is recommended.
4. Focus of hypermetabolic activity in the the inferior aspect of the
right calcaneus bone. There is spurring seen in this area on
corresponding CT exam. This may represent plantar fasciitis.

They forgot to send the head part, I get it today. all the Dr. said over the phone(" It's not as bad as I thought it would be") Told me that he would talk to me this afternoon, about when is the best time to get to Maryland, NCI, he doesn't want anyone  touching me here n Columbus, Ga. Can anyone get anything out of this? Just tired of this waiting game, it took 4 wks to get the CT/PET scan. And What should I do now?

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EricNJill's picture
Replies 6
Last reply 10/30/2010 - 3:58pm

Eric says that he is having problems with perifial vision.  I've noticed lately that he has been running into furniture and corners of the walls.  Yesterday when he came  home from work he had a gash and bump on his forehead.  He is a service manager at a goodyear and he said that a car was up on a lift and he ran into it.

They already had him scheduled for a Pituitary MRI because he's been so sick with vomitting and they can't figure out why.  They said it should also show up if there are any mets in the brain.  I was just wondering if this was a sign and if there were any other signs I should be looking for.

Thanks, Jill N Eric in OH

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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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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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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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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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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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Jill and Eric in Fl's picture
Replies 40
Last reply 10/29/2010 - 11:32pm

I wanted to post an update to let you know that Eric has been moved to hospice. He was having a lot of pain and the meds we had at home just weren't controlling it anymore, it got so bad Sun night I had to call an ambulance. On the way to the hospital his heart rate was 240, the doctors all came in and gave us our options and he decided no more treatments. He was moved to the hospice house on Tues and they finally have his pain under control and he is very lucid sometimes and very out of it talking nonsense other times. Nights seem to be the hardest he get out of bed and try to go home, last night he told me I was scaring him and that he didn't trust me anymore, I know it's the disease and he medications talking but it broke my heart. He hadn't eaten in 3 days but since the pain is under control he has started to eat  little. We have no way of knowing how long we have left but we know it's between him and God now. We are prying for a peaceful passing or a wonderful miracle. It is very hard because he gets very anxious when I am not here so I try to stay with him but I also need to go and comfort and console my children. My 13 year old daughter, who because of this disease is wise beyond her years, said "Mom, Dad doesn't have much time left, go take care of him, help him with this final journey, you can take care of us later"  They have been wonderful, taking care of things at home and putting on such brave faces. My 10 year old son said it best, "Mom, melanoma is mean"  I couldn't agree more. Praying for peace and comfort for Eric and praying for all the warriors out there battling this awful mean disease

Jill and Eric in Fl

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