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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Some may know my history, it is up to date on my profile.  Surgery in October. Surgery in November. Interferon in December (two days after hubs mom died) to half of January then stopped per oncologist.   No current treatment now which freaked me out.  So I had two biopsies taken cuz I had some free time and they are dysplstic Nevis. Great news.  These are how my primary started so two more WLE procedures, thankfully just in the procedure room.  That's on the 5th of April.  And finally I get my scans on April 9th to see if the lung thing grew bigger than 4mm.  This is my scared to death point.  I would go to stage 4.

You can cut things out of me, pull out nodes but playing around with the internal stuff is paralyzing me with fear.  It came on when we got home from a month in Florida.  Life seemed so normal and happy and great excersing and shopping (I've gone from a size 16 to a 6 in a year, partly due to eating gluten free and then not being able to eat while on Interferon.  when I was shopping I was thinking. I wonder if this would fit my daughter when I'm gone.

I have continued to crazily clean and organize the house.  A few more degrees warmer and I can wash the outside windows.

I am continuing to teach my 17 year son life skills.  Cleaning, laundry. Kitchen, shampooing carpets. Chasing spider web's,, etc.  We have also started an herb garden, quite large. He should be a great gardener before I die.  Hubs and I do all paperwork together so he will be fine. I also keep a copy of all passwords and account numbers in a book in a lockbox with important papers.

So, yes, since we returned to the dull cloudiness of Ohio, I have lost my great attitude I have carried all along.  I just don't know where it went.  My depression is up, my anxiety is way up, and this weather makes my joints ache.  

When do you get to the point where you don't have some kind of procedure or treatment going.  Where you can catch your breath and not planning more treatment for the next stage.  People say just push it to the back of your mind and keep living.  But when things are happening monthly I cant seem to do that.  I am a naturally positive person with empathy for everyone one this board and most people in general. I am very spiritual,  take care of my chakras, meditate, use essential oils.  And match colors according to my aura.

I know I lost a few of you there but these are strategies for me to keep going and healing.

I'm tired from the last 6 months, hurrying to get stuff done at home and scared about next month.

Any advise, kind words, kick in the pants, PMA, lullabies welcomed.  Nasty remarks will be burned in the fireplace.

Thanks, Colleen 

Live!

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bikerwife's picture
Replies 4
Last reply 3/13/2013 - 10:50pm

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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Replies by: Fighting Mama, Tim--MRF

Hi,

Haven't posted in awhile. I have been on Zelboraf since January 2012 with a good response (with usual SE gi upset, gas, hair loss, extreme photosensitivity). My last CT was very encouraging and continued to show marked regression. I have been pretty stable from the head down. My brain on the other hand has had a mixed response to Gamma Knife. In 2012 I had three sessions of GK and my last brain PET/CT, done last week, showed marked progression. Since the scan I have had some seizure acitivity. I now have plans to initiate whole brain radiation this Friday. It seems so surreal to hit the end of the road, so to speak. Would like to hear from those who have gone through whole brain under similiar circumstances or if there are any new trials taking folks with brain mets?

Fighting Mama~ Amy

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steelergirl's picture
Replies 3
Last reply 3/13/2013 - 5:01pm

I am having a broncoscopy with a needle biopsy tomorrow to see  and probably also lymph nodes removed from around my windpipe to see if my cancer is back, or to defintely be diagosed with sarcoid.

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nancy mary's picture
Replies 6
Last reply 3/13/2013 - 4:24pm
Replies by: nancy mary, Janner

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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Colleen66's picture
Replies 20
Last reply 3/13/2013 - 10:08am

 

My head is spinning, anxiety is over the top, depression kicking in.  Spring cleaning all days to give my mind a rest.  Could really use the chat room.

Colleen

Live!

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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.

Login or register to post replies.

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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