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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bikerwife's picture
Replies 1
Last reply 3/13/2013 - 7:24am
Replies by: POW

Lynn is having his 5th gamma knife this morning they put him to sleep for the procedure this time. He had his first treatment with abaraxene last Monday. Just tired no other problems so far. 3 weeks on one week off en repeat then scans. Blessing and prayers for everybody out  mpip land.

Belva

What God leads u to he will. Lead you through

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swissfarm7's picture
Replies 5
Last reply 3/13/2013 - 2:14am
Replies by: swissfarm7, buckytom, Janner

Hi, all!  Hans is 4+  months through his year-long interferon treatment.   This comes after his Stage 3B diagnosis last July and subsequent lymph node dissection.   Compared to many people, his side effects have been manageable.  He's lost 25 pounds (and was trim & fit to begin with, so he didn't have weight to lose) and is generally more fatigued, but he's continued working on our farm and takes on occasional ski day. 

His white blood cell and neutrophil counts have been critically low for quite some time, so his dosage was halved.  The counts have continued sinking, though, and he now needs to consider stopping the treatment temporarily (or permanently) or taking another drug to treat the neutropenia.  His local oncologist recommended neupogen twice weekly.  I've heard of people with other forms of cancer receiving chemo and taking neopogen.  I read that leukine might be more appropriate for melanoma patients. 

Anyone have experience with this and care to share your thoughts?  As in the past, I'm not asking for opinions on interferon treatment, though I have no doubt someone will feel the need to comment to that end. ;-)  I'm specifically looking for info on neutropenia and the drugs mentioned above.  Thank you!

Best,

Colleen

Keep on keeping on.

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ncdaniel's picture
Replies 6
Last reply 3/13/2013 - 12:34am

Since my the Melanoma in my wife has spread from her head ( Removed 2011 11.5 mm deep ) to her lungs in July 2012 meta sized to lung multiple spots with tumors a needle biopsy was done in 2012 of her lung tumor.The sample showed Melanoma (no surprise) but the sample was not big enough for Braf testing, The assumption was made that since her original tumor on her head was tested not to be  BRAF receptive so would her lung tumors. My question is should new samples be taken and tested? I have just read on this site about NRAS testing should this be done?  I am not sure I even understand NRAS but any thought would be appreciated. I know most of you are not medical people but living this makes you one pretty quick. Any advice would Help. My wife has had IL2 - not a responder, and had one dose of IPI /Yervoy and is now on high dose steroids 80mg now 60mg due to issue not sure when or if Yervoy will resume anybody with any experience with this?

Daniel

Trust in God - Live one day at a time

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Hi.
I have a question about my path report.
from what i,ve read mine does not include mention of most of the item talked about or read about
Online. It is from Columbia dermatpathology NYC.
It reads: " I interpret this as in situ melanoma, possibly arising in a dysplastic nevis.
The lesion extends to one peripheral margin in the plane of bisection."
This was ashave biopsy.
Micro: the specimen is bisected and shows confluent junctional melanocytic nests as well as many
Single melanocytes extending upward within the epidermis.

Is this sufficient? I,m puzzled that thi eas all that was written.
Appreciate your opinions. Thanks.

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dian in spokane's picture
Replies 8
Last reply 3/12/2013 - 10:03pm

I've read a ton of tips and talked to a lot of people and I think I'm ready. I'm geared up emotionally for it. And I've been sort of following MarieM's great advice on prepping my skin for it, which includes baths in water with oil, and thrice daily smearing of Eucerin over the whole body. My skin is as soft as a baby's. Hopefully that will ward off some of the worse of the peeling.

Today I am going to buy some Biotene products, and after rereading KimK's harrowing description, I think I'll stop in the baby dept. and buy some Butt Paste. :)

MANY people suggest that I take , easy to eat, easy to digest, handy food with me to eat during times of hunger instead of waiting for the hospital food. I'm wondering if anyone has any suggstions about such foods? Also.. Jane's tips suggest that one get a protein powder you can mix with water. When I went to the vitamin shoppe, they immedidately recommended regular Whey Powder, which I use in my morning breakfast shakes. That made me gag and I'm not even in the hospital yet.  I wonder if anyone knows if there is some kind of LIQUID protein that can be poured into water?

My doc says they will be inserting a Picc line, instead of a Port, because they've found it reduces infections. I was scared about a Port, which I've so far avoided getting, so I am happy about that. Though I seem to remember that the last time I had a Picc line it didn't go that well either.

Even though I know that the biggest dangers are serious, like heart failure or kidney failure, the things that I'm most anxious about are more mundane. Like..skin reactions. I break out from having a hot bath, or wearing a bra, or..just driving through texas, I'm worried about the rashes. Anyone have any suggestions for a non steroidal anti itch cream?

And my other mundane concern is my back! I have a...35 yr back ache. It's something I have learned to live with, aned part of that strategy is never sitting too long, never standing too long, never walking too long, never lying in one position too long. You get my drift. I can commonly end up in pain just from sleeping on a strange hotel bed for a couple of nights, so I am worried about what 6 nights in that uncomfortable looking hospital bed will do to me.

I do heart stress tests and pulmonary function tests this coming Thursday (the 14th) and go into the hospital to start treatment on St Pat's day.. a lucky day for me!

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buffcody's picture
Replies 6
Last reply 3/12/2013 - 4:18pm
Replies by: kylez, audgator, buffcody, Anonymous

I'm 10 weeks out from my last ipi infusion but my itching and rash has reached their height (I hope) the last week or so.  My doctor's office has recommended Sarna, though they also earlier had recommended an over the counter cream containing cortisone.  I wonder if any of you have had similar long term side effects after ipi and if you found some other over the counter product that gave more relief. Or prescribed?  I'm trusting that still experiencing these kind of side effects after 10 weeks eans that my immune system is still actively fighting the melanoma not just giving me problems.  Next set of scans in two weeks.

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Cielo's picture
Replies 3
Last reply 3/12/2013 - 2:57pm
Replies by: kylez, Colleen66, aldakota22

We have been praying for guidance and hope that along the way God will keep guiding us of what we have decided.  We were told yesterday that it is the only best option. Scott's LMD is around the membrane and there is no telling where it has been spreading, so Gamma knife since it is a "Specific/targeted"  treatment is not for him.  This will cover also taking care of the lesion around the sinus. Today, he will get his first session of the whole brain radiation.  Please send us positive energies and prayers.  Thank you all.

Cielo

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

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meeshka6059's picture
Replies 10
Last reply 3/12/2013 - 2:35pm
Replies by: susanr, meeshka6059, POW

After only a short time on Zel my father's tumors in his body grew. He is on a very low dose as he doesn't tolerate Z well. His last brain scan showed new tumors and we are meeting today with his neurological radiologist to discuss options, if any, today. (Dad is 82, diagnosed stage IV in October.) I expect to hear some talk about gamma knife today. Wondering about anyone's experience with this, effectiveness, side effects, etc. He is continuing on the Z for now until the brain mets are dealt with. Then they will do another body scan to see if it's working. Dad continues to be weak and tired, losing weight, and his mental capacity is dwindling. He has no pain or nausea. We are giving him medical marijuana tincure for seizures and that seems to be doing the trick. I continue to count every small blessing.

Thank you. I'm sending you all love and light. ~Michelle

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mary55's picture
Replies 9
Last reply 3/12/2013 - 2:25pm

Laurie died on February 28 surrounded by her family.  Her last posting here was about donating her body to science, which we were able to do.  Laurie often shared her postings here with me, her sister Mary, and I know how much this forum meant to her.  Thank you all for the support, companionship, information and courage you all shared with her.  Your final postings to her in January were lovely and a real tribute, and she got to read them.  with gratitude, to the warriors online from Laurie's family

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Tamils's picture
Replies 9
Last reply 3/12/2013 - 11:45am

My father was diagnosed with stage iv melanoma last November after a lump in his skull turned out to be melanoma.  They could not find a primary on his skin.  He had had a spot behind his retina for 20 years or more, which had undergone a very tiny change, but an eye specialist ruled out ocular melanoma.  After his surgery to remove the skull met, his scans were clear.  Fast forward to his latest scans from last week, and he has two spots on the right lobe of his liver, as well as apparent lesions on various bones.  Today his oncologist, in combination with a different eye specialist who hasn't seen him for nine months, says that it's ocular melanoma, based solely on the fact that it has metastasized to the liver.  I'm not convinced it's OM.  Has anyone else had a fairly rapid met to the liver with an unknown primary, that wasn't considered OM?  I will cross-post this to the Cure OM board as well.

The doctor also said that the mets were progressing too rapidly for ipi or IL-2 to work.  He is B-RAF negative.  She recommends Temodar but says it isn't much use.  We are collecting his records as quickly as possible to get a specialist's opinion.  He is otherwise in pretty good health and is in no pain; sure ipi can take awhile to work, but don't some people respond within a month or two?  I am also looking at clinicaltrials.gov.  Any comments on treatment would also be appreciated.  Thank you so much.

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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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