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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Jaime.30's picture
Replies 2
Last reply 10/9/2010 - 7:08pm
Replies by: Jaime.30, amybusby

Eston was on Interferon for 10 months and it was stopped in late August due to what was thought to be stage progression to stage IV...so far doctors say the inflammation in his brain was not from Melanoma because not one cell was found.   He still seems to have what we call around here Interferon fog...memory slips or sometimes he just does not seem with it and some days he will wake up and you would have thought that he had just had a shot because everything hurts.  His joints are sore most of the time still.  I was wondering if this happens with a lot of Interferon patients.  Will these side effects go away eventually.  We have not seen the Oncologist since stopping the Interferon to ask these questions because he has been seeing the Neurosurgeon and was expected to go on to do WBR...so his appointment is not until the end of the month.  Thank you Jaime

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EricNJill's picture
Replies 11
Last reply 10/14/2010 - 4:45pm

Eric's vacular tumors have been bursting.  We've been bandaging them up and tonight I changed one of the bandages because it was seeping so bad that it saturdated his sock at work today.  When I removed the bandage the odor was so bad I almost got sick.  I cleaned it with alcohol and still the odor was from the tumor awful.  His leg has recently become very swollen and this area as well as an area on his thigh where he has other vascular tumors is red.  I outlined the redness in pen to see if it grows, but I'm beginning to think he may have an infection.  I have never smelled an odor like that from his vascular tumors after they burst.  He is also running a fever of 99.1 right now.

I called earlier to our specialist in another state but they were gone.  What are your thoughts?  Anyone else had this happen?

Thanks, JillNEric in OH

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/9/2010 - 8:36am
Replies by: A, Janner, EricNJill, Jaime.30

I recently developed pimple-like thing which is not a pimple. It is red in color and drives me crazy when I think about skin metastases. However, when I press on it, the color goes away. Is it possible for skin metastases to  "blanch"????

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Janet2's picture
Replies 8
Last reply 10/10/2010 - 5:40am
Replies by: Janet2, Anonymous, Sharyn, lhaley, jag, Linda/Kentucky

I was admitted to hospital at the weekend and am home now -- was getting dehydrated from vomiting/sickness and had severe headache/dizziness. CT scan shows carboplatin hasn't worked and all my tumours have grown plus new ones. Also, I now have a tumour on my brain and a subcutaneous one at the back on the right-hand side. I've been told to have a week's quality of life and it is planned I should start whole brain radiation to deal with the symptoms and help with with quality of life the following week. I was wondering if anyone has had the whole brain irradiated and if so what are the side-effects during treatment and more long-term ones afterwards. Also, how long after treatment do the longer-term ones start and how long do they usually last? It is planned that I should have two sessions three -- four days apart. I am having radiation to tumour by right hip as well. They are leaving the rest of my cancer so I don't know how it will behave and don't know if they will recommend any further treatment as they say I may not be well enough. I have already been turned down for  Ipilimumab due to my mobility problems. Any information would be appreciated. By the way I live in the UK.

Janet 

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Hi Lauren,

 

Glad tosee you posting. How is Jenna doing? Hope her treatment is working.God Bless and hoping you have good news to post.

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Connie's picture
Replies 5
Last reply 8/5/2013 - 8:28am

If anyone out there has any information or been thru treatment for radiation burn and an open wound in a melanoma site, I would appreciate any help you could offer.  My Mom had a very large tumor removed in June in her inguinal canal which was a melanoma, probably metastasis from her big toe which was amputated 5 years ago. The surgical site healed very well. She has two other deeper tumors in her pelvis, that they have left alone as they said her quality of life would be affected. She chose not to do chemotherapy as she is 82 and did not want to feel sick with what time she had.  About 4 weeks after her surgery, a lump reappeared in the area of the tumor that had been removed. Since her lymph glands were involved in the surgery, the surgeon did not want to drain that area as he felt she could end up with a permanent drainage. Her oncologist offered radiation as a way to get microscopic cells left behind in the surgical site and "slow things down". Her organs have been clear.  She had 4 weeks of 5000  ???Grays a day. By week 3 she was badly burned ( raw area on inside of left thigh around 5 to 6 inches long by almost 2 inches wide) and the lump was still there.  Prior to radiation I read the radiologist report which said the lump was fat. They continued treatment until completion. She was told she could end up with a bad sunburn. She ended up with her skin turning black.  She had her do rinses 3 times a day to the site and apply a burn cream.  Early this week she got feverish and yesterday ended up in the hospital. Yesterday where the lump was, (and is?), opened up and a bunch of ( my sister said) blood and pus came pouring out.  She lives in Montana and I live in Washington and I have called my sisters as I feel she needs some Doctors who know about wound care.  The site is being packed and she is on IV antibiotic..  Does anyone know about hyperbaric medicine and wound healing?   Has anyone had a similar experience and has gotten good treatment?  Her skin that was healing from the burns has also been impacted by the infection and/or fluid accumulatiion.  Do you know of ointments or dressings that you have used to keep one area dry and healing while another area close by, is draining and packed? Has anyone had lymphedema cause a similar wound and if so how did they treat your wound? I will be going home soon and any help on what to ask and what to do would be greatly appreciated.

Sincerely,

Connie

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Connie's picture
Replies 4
Last reply 10/11/2010 - 6:58pm

If anyone out there has any information or been thru treatment for radiation burn and an open wound in a melanoma site, I would appreciate any help you could offer.  My Mom had a very large tumor removed in June in her inguinal canal which was a melanoma, probably metastasis from her big toe which was amputated 5 years ago. The surgical site healed very well. She has two other deeper tumors in her pelvis, that they have left alone as they said her quality of life would be affected. She chose not to do chemotherapy as she is 82 and did not want to feel sick with what time she had.  About 4 weeks after her surgery, a lump reappeared in the area of the tumor that had been removed. Since her lymph glands were involved in the surgery, the surgeon did not want to drain that area as he felt she could end up with a permanent drainage. Her oncologist offered radiation as a way to get microscopic cells left behind in the surgical site and "slow things down". Her organs have been clear.  She had 4 weeks of 5000  ???Grays a day. By week 3 she was badly burned ( raw area on inside of left thigh around 5 to 6 inches long by almost 2 inches wide) and the lump was still there.  Prior to radiation I read the radiologist report which said the lump was fat. They continued treatment until completion. She was told she could end up with a bad sunburn. She ended up with her skin turning black.  She had her do rinses 3 times a day to the site and apply a burn cream.  Early this week she got feverish and yesterday ended up in the hospital. Yesterday where the lump was, (and is?), opened up and a bunch of ( my sister said) blood and pus came pouring out.  She lives in Montana and I live in Washington and I have called my sisters as I feel she needs some Doctors who know about wound care.  The site is being packed and she is on IV antibiotic..  Does anyone know about hyperbaric medicine and wound healing?   Has anyone had a similar experience and has gotten good treatment?  Her skin that was healing from the burns has also been impacted by the infection and/or fluid accumulatiion.  Do you know of ointments or dressings that you have used to keep one area dry and healing while another area close by, is draining and packed? Has anyone had lymphedema cause a similar wound and if so how did they treat your wound? I will be going home soon and any help on what to ask and what to do would be greatly appreciated.

Sincerely,

Connie

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Mark_Catskill's picture
Replies 16
Last reply 10/11/2010 - 11:04pm

Hi Everyone.  I haven't logged in in a long time.  I am here to reassure everyone that it can be done.  Four years after developing both lung and brain metastasis, I uave noevidence of active disease.  A few old, asymptomatoc  tumors still show up on scans but they have not changed in over a year.  I am "stable" and the prognosis that I will remain stable is very, very good.

 

If you wanr to read about all the treatments I have had I just updated my medical history on my profile.  Just search for Mark_Catskill.

 

I will try to visit more frequently to share my experience and knowledge with the MPIP community.

 

Mark from Catskill
 

I have cancer but cancer does not have me.

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Hi Everyone.  I haven't logged in in a long time.  I am here to reassure everyone that it can be done.  Four years after developing both lung and brain metastasis, I uave noevidence of active disease.  A few old, asymptomatoc  tumors still show up on scans but they have not changed in over a year.  I am "stable" and the prognosis that I will remain stable is very, very good.

 

If you wanr to read about all the treatments I have had I just updated my medical history on my profile.  Just search for Mark_Catskill.

 

I will try to visit more frequently to share my experience and knowledge with the MPIP community.

 

Mark from Catskill
 

I have cancer but cancer does not have me.

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/7/2010 - 7:21pm
Replies by: EricNJill

So happy to see you are posting. How are you doing?I hope Eric's treatment is going well. Stay positive & good luck.

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bluepeople's picture
Replies 7
Last reply 10/20/2010 - 1:42pm

 So my husband was recently diagnosed stage IIc, did surgery and had his PET scan yesterday.  Found out today that the PET scan was clear!  I was so worried that something would show up.  It seems that melanoma never really goes away, but this is such good news for us.  He is going to attempt the year of interferon treatments and we'll go on from there.  I just wanted to share my excitement and thank people for their support on this board. 

Akilyn

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dkbart's picture
Replies 4
Last reply 10/7/2010 - 6:05pm

I have never posted on this site.  Just posting that I have been 25 months NED since being diagnosed in August of 08'.   I wish all the best and hope for everyone who participates on MPIP.

Dave Bartels

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nj-Mark's picture
Replies 12
Last reply 10/10/2010 - 2:34am

Hi All,

After almost 4 years on my melanoma journey (see profile) I've now gotten to where it's time to wait this out.   I'm set up with Hospice and have been working with them to manage the pain from my abdomen and leg mets.

I'm hoping to continue to lurk on the board for a long time, but I wanted to say now I am so thankful for all of the wonderful support, virtual hugs, emails, and conversations I have had with many of you over the years.   You've been my rock and inspiration many times.

Warmest regards to everyone.   I really feel in my heart that a cure is coming soon.

-Mark

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/7/2010 - 10:59am
Replies by: EricNJill, Bonnie Lea, Anonymous

Hello everyone,

I have Stage 1 melanoma history and recently had moderately atypical nevus removed by my plastic surgeon with clear margins. Yesterday I noticed a bluish line just in the middle of a scar. I am worried now about it: is it bruise, blood vessel or pigment???? Any thoughts? It drives me crazy...

Thanks!

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Linda/Kentucky's picture
Replies 8
Last reply 10/8/2010 - 10:38am

Just returned home from looong 2 days of scans, bloodwork and office visits.  Wish I could say results were good but I'd be lying.  After 6 months of following the Ipi trial I hate to report John was definitely not a responder..... I really didn't need thousands of dollars in scans and bloodwork to tell us this. We kind of felt it all along.  I'm really not on here to criticize the use of Ipi. it was a crap shot and we lost this round.  I pray it helps others and please do not be discouraged we would do it all again.  This melanoma that got into my husband must be a fierce thing because from the very beginning it has literally resisted everything we have thrown at it up until now.  We also found out on top of tumor progression that he has a blood clot in his lung.... we now have to deal with.

So here we are now back to square one...... My question is after surgery not an option, failed high dose IL-2 and now Ipi.  We may be looking at some type of Chemo as bad as I hate to say it.  Has anybody had any luck with chemo working at all?  We are also seriously thinking about the Novalis radiation (along with chemo) which is a very precise beam and works on bone,liver, lung.  Our oncologist today told us not to even consider DTIC.  He said Taxol/Carboplatin was a possible choice.  I have not researched any chemo therapies due to being told they usually don't work, well ok.......neither did the other one's we tried.  Sorry not had a very good day~ 

Thanks for any advise given.

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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