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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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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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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bluepeople's picture
Replies 7
Last reply 10/27/2010 - 3:28pm

 So my husband had a SNB more than a month ago, and it has become infected.  He had a fever all weekend and the area was really red.  He FINALLY went to a doctor today and they opened it up, cleaned it out, and now we have to "pack the wound" until it heals inside??  Luckily I'm not too squeamish with this kind of stuff, but hopefully they send good directions home with him.  He didn't even call to tell me he went in for surgery until after it was done!  Has anyone had to do this, and if so, do you have any tips?  I've read that it can be pretty painful. 

Thanks so much!

Akilyn

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MonicaD's picture
Replies 25
Last reply 8/30/2013 - 2:33pm

Hi there,

After my SNB came back positive, I had surgery to remove the rest of my inguinal/groin nodes last week (Oct 18th).  I'm really worried about the prospect of lymphedema now and would love to hear from other people who have had this surgery and what your experience has been and how you've dealt with it.  I was a very active person before and I plan to be again but worry how lymphedema is going to affect my ability to hike, bike, run, etc.  So far, I still have my drain in and it's removing a lot of fluid, which feels good so I plan on requesting to keep it in as long as they'll let me.  I'm still very much in the early phase of healing so when I'm sitting or lying down, I keep my leg elevated and also try to do some gentle massage on my leg.  Is there anything else I can be doing?  What can I expect later in terms of swelling and ability to be active? 

Thanks for any info you can give me!

Monica :)

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lhaley's picture
Replies 4
Last reply 10/27/2010 - 12:53pm

A little more than a week ago I had a lump in my arm and a node in my chest wall (under the collar bone) removed.  Friday a new lump appeared - on my butt! My appointment was supposed to be this coming Thursday but they had me come in early.  I am very impressed with my Doctors at Charlotte's response time. Phone call to Dr. White's office at 11am on Friday, he was in surgery so they had me go to my local oncologist who fit me in right away. When they weren't sure what this was I was given an appointment Monday. Could not have asked for a better response time!  Once there they pulled in Dr. Amin and the two spoke to me together. Now I don't have to take the drive on Thursday!! 

I've been put on an antibiotic and they believe that it's an infection. This has never happened before so we will see.  If it doesn't shrink in a week I'm to go back and they will do a fna, but they said it is not presenting like melanoma. None of my melanoma's have presented normally so I hope!!

Ends up that the lump on my arm was not a subq but a lymph node. By the time of surgery it was 2.9cm. He took extra nodes and all others were clear and clean margins were gotten!!!   The node under the collarbone was only 1 cm. Other nodes were clear and clean margins!!   Knowing that the 2 spots were indeed melanoma I had the best report I could have asked for.

Scans will Dec 2nd. If all is still clear then I'm back on watch and wait!  Meanwhile they are testing the tumors for b-raf. 

Stage IV for 4.5 years now and going for way more!!

Linda

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ValJaneMB's picture
Replies 5
Last reply 10/27/2010 - 9:03am

Hi Everyone,

After receiving so many wonderful responses to my first posting, I thought I'd ask for suggestings regarding what I think is vital to anyone fighting disease - SLEEP!!

I know I haven't had a full night's sleep in years - at this time I am taking zoplicone (I  think my body has built up a resistance to it and it's stopped working) and  I also take 1/2 tablet of melatonin about 2 hours before bed.  I work full days, try to excersise, follow all the rules.

We hear so much about how important it is to get at least 7 or 8 hours of sleep each night.  Right!  I don't know how menopausal women manage.  Stress probably plays a big part in this too.

Any ideas or suggestions? 

Thanks in advance.

ValJane

I am off to work soon so probably won't respond to any posts until this evening.

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tricialeigh44's picture
Replies 7
Last reply 10/26/2010 - 10:01pm

Just want to ask everyone on this site to wish my new friend Kevin good luck on his CT results. As you may know he is getting his results on the 27th.

May IL2 be his miracle!!!!

Tricia

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ChristineL's picture
Replies 15
Last reply 11/9/2011 - 4:49pm

Anyone have experience with peg interferon?  For me at stage IIIB it's one of two options since I don't qualify for any trials (it's either that or regular interferon).  I'm extremely hesitant to do Interferon for a lot of reasons, and supposedly peg interferon has fewer side effects, although it's a 5 year regimen (instead of the 1 year).  I'd love to hear thoughts on this!

Thanks a ton,

ChristineL

Fight like hell

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jim Breitfeller's picture
Replies 2
Last reply 10/25/2010 - 1:29pm
Replies by: bill58, Sharyn

This is a very good presentation from Dr. John M. Kirkwood for patients and care givers. Dated September 2010 held in Cleveland
Ohio.

Dr. Kirkwood give his honest opinion on the clinical trails to date and where they are heading in the future.

http://www.youtube.com/v/6EE5i8sSmyw?fs=1&hl=en_US

 

Please take an hour out of you day to view and listen, It may save you or your love one from doing the wrong therapy.

Best regards

Jimmy B

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bonnieb's picture
Replies 2
Last reply 10/24/2010 - 11:30pm
Replies by: Janner, Anonymous

But it just occured to me today that if only 7% of people have a second primary then why do we avoid the sun after diagnosis with the first?

Not that I am looking for an excuse to go tanning or anything but my Doctor seems so vague about everything and I just wondered about it. Does exposure to the sun increase the chance of melanoma returning?

Cheers,

BonnieB (diagnosed stage 1 Nov 09)

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