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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hbecker's picture
Replies 4
Last reply 3/12/2013 - 8:56am
Replies by: hbecker, swissfarm7, _Paul_, POW

The post last week entitled "death and courage" made me think a lot about this situation we find ourselves in - as I'm sure it did many others who read and post here. I've been participating in this discussion group for 10 months now, and I don't think I have taken any other posts quite so personally in all that time. It helped me come to terms with some of the aspects of caring for and about my husband that so often go undiscussed between us. We have lasted through 42 years of marriage without talking about some important topics that hang in the air between us. Through the years I've learned to be more self-sufficient emotionally, and to understand that even though he doesn't share some of his inward feelings with me, it doesn't mean he's not feeling them. If we had not learned to accommodate each other's divergent styles, I'm fairly certain we would not have stayed together so long. I hope the patient who posted those thoughts has come to a better place by now.

Last week's anonymous post came at an interesting time for me. We have recently finished the GVAX trial at Hopkins. Now it's time to see what's next in our lives. I've written about that on my blog, and rather than repeat those thoughts here, I invite other melanoma survivors and caregivers to read it there.

Hazel Becker
blogging at www.hazelbecker.com

blogging at www.hazelbecker.com

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Cielo's picture
Replies 5
Last reply 3/12/2013 - 8:54am
Replies by: Tina D, POW, Cielo, Anonymous

Scott has been on Zelboraf eleven months today,and while  "Z" has been taking care of shrinking and stabilizing  the mets to the rest of his body, it couldn't protect the brain. Unfortunately, the result of the MRI showed extensive leptomeningeal disease has developed.   We really didn't know what it means but it was explained to us that lesions were in the liquid part in the intracranial part of the brain.  I'm not sure if I got the exact layman's terms here.  In other words...Brain Mets?    Got a call from the Onc's office today to meet next week for possible treatment with the Radiology Oncologist, Neurological Oncologist? and later Neuro Surgeon.  It was suggested WBR . Gamma knife.  I have been teaching my husband the terminologies I have learned from this site, it's all new to him of course, it's all new to me too, but he won't forget NED.  My problem is, he is too exhausted and too weak to fight anymore.  He doesn't like to hear the words radiations and trials....and I don't know what else is there for him.  So sad.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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dian in spokane's picture
Replies 3
Last reply 3/12/2013 - 8:46am
Replies by: Anonymous, Colleen66
Tina D's picture
Replies 4
Last reply 3/12/2013 - 8:41am

Just an update on what has been going on with me. One day after my third ipi treatment, I developed a headache ( which is an unusual thing for me). The first few days I figured maybe it was sinus related, but after the 5th day, hubby insisted I call St Louis. Over the next 23 days, it quickly worsened, even to the point of extreme light sensitivity and nausea and vomiting. Nothing I took helped at all. It became a 24 hr/day thing. During that course of time, an MRI of my brain was done and it was negative. When I went for my 4th ipi treatment, the Dr decided not to go ahead with it until he ruled out serious side effects. Labs done that day revealed endocrinopathy of my pituitary, and it was concluded that was the cause of the headache. I was started on 60 mg of prednisone and by the following day, the horrible headache was history!! YAY! As more labs came in, I received a call saying that they would not be giving me the 4th treatment at all. I was disappointed ( I was very geared up to "make it through all 4" and this felt like failing, I suppose), but the nurse quickly explained... "But, you don't NEED it!" The goal of the ipi is to get your immune system ramped up, and yours IS now ramped up. The endocrinopathy is an immune response. We dont want to get it any more ramped up than it is right now, or you can end up with serious autoimmune problems." . So, my labs are being monitored here at home in Indiana ( this has apparently affected the pituitary hormones that stimulate the thyroid and adrenals) . I may be started on Synthroid at a future date, just depending on the labs. I am being slowly tapered off the prednisone... now taking 30 mg/day. So far, doing great. I have been feeling wonderful and enjoying very busy days here at home. My first post-ipi PET scan is ordered for 3/20. Leaving it in God's hands and trying to always focus on the  blessing of this very day with my family.  I am sure the scanxiety will inevitably come as the day draws closer, but for now, I have been blissfully busy and feeling very well. I have not been on here much lately and apologize for taking so long to update. I am nearly constantly aware, however of the daily struggles faced by so many on here.... even on these days when I am feeling so well. 

Thanking God for the day,

Tina

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Lacey11613's picture
Replies 1
Last reply 3/12/2013 - 8:28am
Replies by: ruby

23 yrs old, diagnosed in January after finding a spot on the back of my left ear. Will be having a WLE, reconstruction, and SNB next week. Wondering how long recovery typically takes? Can't really find much about melanoma on the ear so sort of in the dark.

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tony9511's picture
Replies 8
Last reply 3/12/2013 - 8:26am

I am due for my second surgery in less than a year.  The melanoma came back on my right shoulder, the said it was stage 2 clark level 4 when they did the WLE at the VA the first time.   Now its back, don't know the depth etc.  I am just frustrated and very depressed......and very depressed for anybody that has to battle this cancer.  I guess everything happens for a reason right?  I have thousands of questions in my mind.....what if I was stage 3 etc the first time.  I do trust my oncologist, but you always wonder when its the VA.  I had a resident do the punch biopsy.  Anyway just rambling.  God bless anybody going through this. 

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First Thanks to those that responded to a previous post about Yervoy reaction. AS stated make sure your Doctor knows Yervoy. My wife suffered because  the doctor we used was not experienced. I gained more knowledge her than my wives doctor knew about Yervoy. Thanks to all who educated me on Prednisone, Endicott, Remicade. Great help.

My question for those that have taken high doses of Prednisone  80 to 100 mg.  how fast were you able to reduce in order to resume Yervoy treatment? I have been told it needs to be reduced below 10MG to get a dose. My wife went to 80mg to settle her reaction to Yervoy first dose. How fast has anyone reduced after stable reaction.

 

Thanks,

Daniel

Trust in God - Live one day at a time

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TracyLee's picture
Replies 10
Last reply 3/11/2013 - 1:40pm

I'm in "lower, slower" Delaware. Anyone else on this board from Sussex County, DE or possibly the Eastern shore of Maryland? There is not a local melanama group that I can find in my area...just a lot of breast cancer groups. Naturally, their issues/treatments are not the same as mine, so I've not attended anything they offer.

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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Lacey11613's picture
Replies 1
Last reply 3/11/2013 - 12:36pm
Replies by: WayneG

23 yrs old, diagnosed in January after finding a spot on the back of my left ear. Will be having a WLE, reconstruction, and SNB next week. Wondering how long recovery typically takes? Can't really find much about melanoma on the ear so sort of in the dark.

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Hello fellow warriors!

I am a stage 3 melanoma survivor doing several small fundraisers for MRF throughout the year. I'm looking for women whose lives have been touched by melanoma (either directly or indirectly) who could help me with my fundraisers. The time committment is very minimal and it does not matter where you live.  Please send me an email for more into at welgetracy@gmail.com and put MRF Fundraising in the subject line.

Thanks for your help!!

Tracy Welge

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kkhalsten's picture
Replies 12
Last reply 3/11/2013 - 11:51am
Replies by: kkhalsten, Janner, dian in spokane, Anonymous

Hi, in 2009 I was diagnosed with a thin melanoma on the back of my left leg upper thigh- I had a wide local excision and sential node removal with pathology stating sn was benign...great! Then on 1/1/13- I found a lump on my left groin which grew within 1 week from a marble to small apple....went to the cancer center- had a PET scan - no other "areas" lit up except for the groin- then had surgery lymphadenectomy 3 weeks later and the pathology reads as this:

 B *skin and subcutaneous tissue, left superficial inguinal; dissection: postivie for metastatic melanoma in subcutaneous tissue- see comment:

there is a 4.5 cm composed of metastatic melanoma surrounded by lymphocytes and fibrotic tissue within this lymph node dissection. It is unclear if this nodule represents a lymph node completely replaced by melanoma or a subcutaneous metastasis.....

 

B. seventeen lymph nodes negative for melanoma (0/17)  and benign skin with scar of operation...GOOD NEWS!

 

So, my question is: I understand the actual melanoma node was unclear and the 17 extra nodes they dissected were benign- so  now I'm stage 3 NED- but the oncologist stated to me that there is possible metastasis due to the unclear pathology of the 3.4cm node....

 

does this make any sense? I'm so confused!

indecision

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Cielo's picture
Replies 6
Last reply 3/10/2013 - 11:00pm
Replies by: Cielo, kylez, POW, Janner

Can anyone who had these kinds of treatments please tell us about it? My husband has brain mets and we would like to be informed ahead of time before we see doctors next week.  These were suggested by our Oncologist for possible treatments.  We have sleepless nights, trying to decide what's best. We haven't lost hope and my husband wants to keep fighting but can he endure the treatments.  He is 66 years old and very weak.  He has been on Zelboraf for eleven months.  MRI lately showed metastases to the brain.  Scans on chest, pelvis and abdomen showed healing and stabilizing.  Thank you.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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Anonymous's picture
Anonymous
Replies 12
Last reply 3/10/2013 - 9:59am

I've had melanoma a long time. When I advanced to stage 3 ten years ago, I started contemplating death. I'm not a big believer in these "gifts' they say cancer brings you. I don't feel a bit lucky to have it. But it occured to me long ago, that death takes most people by surprise, and that knowing that your time is short gives you the opportunity to ..make your friendships deeper, bring meaning to your life, and prepare for death.

By that I mean.. spiritually and emotionally coming to grips with something we all face, not just all cancer patients, but every single person. The most common event to human beings..as common as birth. Nothing else is so universal. It's also the source of a lot of fear, fear of the unknown mostly.  So you'd think we would ALL be ready for it when it comes. Instead we often spend most of our lives avoiding even considering death.

During times of good health, remissions, I've tried to discuss death with my husband. It took a long while to even get him to go with me and make legal arrangements, wills and such, which really, we should have taken care of when we got married 25 yrs ago. But if I even bring up the idea of say..what kind of funeral or memorial I might want, he gets crazy. I even tried to talk him into making arrangements ahead of time for funerals for both of us, telling him it would make me feel better to just know it was dealt with.So our children don't have to deal with it. He won't hear of it. God forbid I do anything like trying to clean out all the decades of junk I have around this place so he won't have to deal with it later...I have to do that in small doses, while he's working, so he won't notice.

But it's the spiritual and emotional aspects of dying I want to look at most of all, and it seems there is not a single person in my life I can discuss death with, without them breaking into tears. Maybe I need to see a counselor, since I am not a religious person, nor even a believer, I can't see a clergyman.

Still, I feel like I've made progress on my own contemplations of death. I feel much less fear of it now than I did 10 yrs ago. And I'm even comfortable with the fact that melanoma will probably take me one of these days. I don't feel much fear about death itself, since it IS so common after all.

But now I am facing this huge treatment ordeal. I know I need to get courageous, and be strong, but.. I'm feeling weak, and a little resigned. Like, all this time, I've always thought I would win, but now I'm feeling like I am just forestalling the inevitable. I think this is a bad attitude to take into treatment.

Now, I'm also not one of those people who believe a 'positive attitude' will save me. I've been around here a long time, and I've seen very positive people die. And I've seen very spiritual people die. People often talk to me about my positive attitude, and I mostly have one...but I don't believe cancer has a clue or a care whether it's host is positive or despondant.  So I don't think that just thinking about death is going to cause me to die!

Nevertheless...I'd like to set aside these thoughts of death and try to build my courage for treatment. I know that going into it believing it will work will help me face the discomfort of the treatment.

I am not sure how to find a balance. Somehow, I'd like to be able to be accepting of the inevitablity of my own death, while at the same time, visualizing myself making it through treatment and into remission again.

I've seen people here face treatment AND death with such courage, and I'd like that for myself. To face it all with grace and courage. I'd like to find my way to it.

I post this anonymously because sometimes my loved ones read here, and because I believe that these thoughts are in many of us here. 

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ruby's picture
Replies 7
Last reply 3/10/2013 - 3:45am
Replies by: ruby, Prd10, Tina D, Hstevens0072

Hi all

I would welcome anyones advice here please

I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

 

I have now bee told to take interferon for 4 weeks high dose and then 12 months delf administered... I have a 8 month old baby to look after a 13 year old daughter and am scared I will not cope whilst on the course I also live in ireland away from all my family I am put off my the bad side effects but also dont want to regret not taking this chance to see off the monster your thoughts advice anythink welcomed as this is the hardest of decisions..

 

thank you

 

rachel

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mark d's picture
Replies 5
Last reply 3/9/2013 - 8:44pm

I was diagnosed with nodular mel. on Feb 1. I had surgery on the 27th to remove my earlobe and SNB in my neck. Well one node came back positive and I have to get my neck completely cleaned out now. The only treatment I am authorized is interferon because the Army only approves that right now. I just want to know how others have reacted with this treatment. How sick were you. How successful were you. How many treatments were given. Since my Mel was on my ear it is kinda difficult to treat with conventional methods. Thanks for the info and this site for support.

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