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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Anonymous's picture
Anonymous
Replies 3
Last reply 10/6/2010 - 12:46pm
Replies by: bcl, JennerFromIowa, jag

There was a day when I came here some years ago inviting all of you to share in a mutual joy and it ended with no joy.  This is a difficult time for me as I once again relive that joy that ended in no joy.

It was a time that I was happy to be a survivor but at the same time sad to be one because the one so close to me was not.

It bothers me deeply of why her and not me, just as it has before then of why them and not me.

Grateful as I am for the life experience  melanoma has afforded me, I hate you for what you have stolen from my being.

One day melanoma, you and I will have a final reckoning.  It has been so long coming and you so have taunted me, but this day melanoma will indeed will come; and you just like me, you can not and will not avoid that day  when you and I meet once and for all.

Haughty as you may be as you rear back in your chair and laughingly accept my challenge ..just remember this--one of us will die, and it might not just be me, but it may be you, you  no good  son or daughter of a bitch.

The main reason is that just that once, you decided to show off and I saw you.  I know what you look like.

I will kill you

 

 

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KellieSue's picture
Replies 4
Last reply 10/6/2010 - 9:17am
Replies by: jag, Fen, lhaley, King

Eh!

Been having some hip pain recently, thought it was another tumor on my hip(I know, worst case scenerio always pops into my head)

After having an xray and speaking to the Ortho surgeon, I apparently just have weakened bones from hip radiation a year ago. He recommends partial hip replacement ASAP.  So onto another surgery on Friday am. Should be a pretty simple surgery(compared to some I've had.)

I gotta tell ya, between the hysterectomy, hot flashes and hip replacement I feel about 40 years older than I am!

In the meantime been waiting for IRB approval to start the redose of ALT-801. Grateful they haven't let me start yet since this hip problem came up.  Now I can get this surgery done with, heal up and be all ready for redose in a few weeks!

I met a nice Stage IV lady and her family today, Jackie! Dr introduced us as she's getting ready to start ALT after she has some radiation to her hip. Her sister said she had visited the board and noticed we lived only 20 minutes apart!  Hate that another person is having to go through this but nice to meet someone!

Super fun times folks!

Kellie(from Iowa) Stage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Replies by: bcl

My mom is suffering from cancer and is looking for a lawyer in the san diego area that has experience dealing with hospice situations.  Can anyone help me out?  Thank you!

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cwparson's picture
Replies 7
Last reply 10/5/2010 - 10:29pm

I have been blessed with my fourth clear PET scan.  It has been two years since my last surgery. 

I have been stage IV since 2001.  Eight major surgeries, lost my right kidney and two years of chemical treatments. 

Thanks to all of you for your help and inspiration.

ChrisP

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SandraDee's picture
Replies 23
Last reply 10/5/2010 - 10:14pm

Hi all:  This is Sandy - Buffalo.  I only changed my name b/c when the forum here changed, I was having trouble getting on so had to create a new user name. 

Anyways, my "free ride" pass seems to have expired.  The clinical trial (IMC1121B) that I started almost 2 years ago and that was keeping me stable has gone south!  So has my melanoma.  So, in addition to 1 worrisome tumor in the bottom of my right lung, as well as other, smaller tumors bilaterally, I am now dealing with a. 5cm x 6xm (gosh, it's so hard seeing those large #'s) "mass" in my small intestine.  It is causing me a lot of abdominal/back pain, as well as fever and anemia.  Hemoglobin this week was a mere 6.8, so I have had 2 units of blood infused this week alone.  Also got 2 earlier in the month, so apparently there is some type of internal bleeding going on, and the docs have yet to pinpoint the location.  Has anybody heard of mel sypmtoms (fever, body aches) responding to antibiotic?   The confusing part is that my WBC is skyrocketed (more than doubled in 2 weeks, and was high to begin with), as my RBC continues to decline.  However, on antibiotics, fever goes away and WBC comes down a bit.  So, my doc seems perplexed as am I...do I have an infection on top of the new mel findings???  Sorry, I'm getting winded here.

I'm currently being treated at Roswell Park in Buffalo, and they are suggesting possible small intestine surgery (capsule endocscopy scheduled next week to determine location of bleed), followed by Temodar, hopefully followed by ipi.  IPI of course is very questionable due to entering that treatment with a compomised small intestine. I am going to Pitts to consult with Dr. Kirkwood on Monday and hope to get a few more options/clinical trials. I am also in the midst of BRAF testing.   Bottom line, I need to start on something fast!

Sorry I've been away so long, dear friends.  I am not one for change, and it took a lot for me to even figure out how to log on since the changes.  And, enough about me....blessings go out to Jerry, Kurt, Sharyn, JAG, (whose posts I've followed for 2 years now), King, Sue Kyser,  Charlie, Terra, James from Sydney and all of my other long lost friends.  Even though I haven't posted in months, I still check in on so many of you!

Hugs,

Sandy - Buffalo

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NicOz's picture
Replies 3
Last reply 10/4/2010 - 8:30pm
Replies by: glewis923, washoegal, Anonymous

I fail to see how choosing to post anonymously is not being respectful. If someone chooses to maintain their privacy by not using a recognisable moniker, then they are perfectly within their rights to do so, surely?

I don’t post anonymously here, but I also don’t ask many questions these days, nor do I have much to “offer”. Not everyone who visits this forum has travelled the more ‘typical’ route of melanoma progression or treatment. And with the amount of people concerned about “upsetting the natives” and “scaring people” with their stories, I actually feel that I have nothing to offer in most cases.

I used to post on here more frequently, but no longer feel part of the ‘community’ so these days it is fairly rare that I respond. I have nothing to offer with regard to chemo information that hasn’t already been covered in numerous posts. I have no advice to offer stage I, II OR III as I jumped straight to IV. I don’t even have much to offer stage IV as I only deal (at this stage) with brain mets using a mixture of surgery and SRS. Don’t ask me about liver, lungs, intestines, bones, subcutaneous mets... I have no idea or advice to offer. I will deal with them if and when I have to.

I don’t get on and talk too much about brain mets, other than to update any treatment I’ve had recently, and I’ve had that many surgeries that I’d just be repeating myself over and over (which would be a waste of time in my book) And frankly, sometimes I’m just too busy living as normal as possible life and spending time with my little girl.

Because I choose not to immerse in  and surround myself with melanoma does not mean that I have any less right to visit this site to lurk and see how friends are doing. If I choose to distance myself to stay away from here because I do not feel up to seeing one more ounce of bad news, that is my business. If I choose to push melanoma to the periphery of my life, then more power to me! I already have it in my body- I see no need to have it on my mind unless it is necessary.

I have divulged all of the personal information I intend to, and have no wish to go over it ad nauseum. There are archives for that.

I am at a different place to where I used to be, so this is what works for me. Times change. Circumstances change. Fear changes, and even abates. My needs are different. I have been around here for 2.5 years. Not everyone is at the same stage or in the same place, and I think people tend for forget that lately.

I don’t get my “hope” from anyone else, so I don’t come here looking for that. I do my own research on what interests me, and I’m qualified enough to do that considering I was clinical trial researcher prior to melanoma. I’m in a different country to most on here, so I’m not going to be any help with doctor recommendations, available trials,  disability/insurance/financial issues.

I don’t reach for NED. To me, it’s just another acronym. I’ve never been NED and that doesn’t actually bother me because, for now, I’m still living independently, still caring for my 5yo daughter, still doing the school run and still taking my girl on bone-jarring rides at the local show (fair, I think most call it) From November to June just past, I had 3 craniotomies (one of those was a double) and an SRS treatment, and there was not a month when I didn’t have to travel for medical appointments. For the moment, I’ve had 3.5 months at home, and I’ve been loving it.

Yes, I still have 5 tumours in my brain, but meh. When I get to the point where I need to have something done about them, I will (and no, they aren’t measured in mm’s IFKWIM) For the moment, we’re chugging along nicely.

My point? Not sure. Just letting people know that there are real people who visit this forum, and their reasons for not being active are likely many and varied. It is up to no one else to judge them for it. People have the right to be active, or not. To be anonymous, or not. Everyone has their own reason for being here, and it is no less valid because it doesn’t mesh with how someone else thinks it should be.

Rant over.

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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Rocklove's picture
Replies 2
Last reply 10/4/2010 - 2:00am
Replies by: Anonymous, washoegal

I finished bio-chemo 3 months ago and  have increased in tingling and some pain in the feet. Recently it has also got to my fingers and hands. It does cause problems with every day functions like walking, driving and typing.

The doctor has prescribed gabapentin. Started 3 weeks ago with 100mg 3xday. Now 300mg 3xday.

The Doc also referred me to a neurologist. Does anyone know what I might expect when I see the neurologist?

Not sure what they can do as far as tests and medication.

I was told by my melanoma oncologists the neuropathy could go away in about a year. But am hearing of people having the problem for years.

I'm dum on the subject...and would appreciate some help to understand.

Thanks,

Rocky

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Bugandi's picture
Replies 3
Last reply 10/4/2010 - 12:16am
Replies by: Cynthia C, Bugandi, paul

Hi,

I had a recent PET scan that showed an 8 mm spot or uptake in my left lung, and am quite frankly, scared!!!!!.. I have had a couple of surgeries, but have been told that chest surgery is no walk in the park.  My oncologist discussed radiation as an option, anyone ever had radiation to the lung?s?  I go back in 2 weeks for a high resolution CT scan and then will have to make deisions as to how we are going to attack this.  I don't know what to expect, so any feedback would be appreciated.

Thanks

Bryan

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paleskinisin's picture
Replies 15
Last reply 10/3/2010 - 10:58pm

I have been battling this beast for 4 years.  Initial year, 2006, I had mel on back and 3 positive sentinal nodes.  2008 one met to lung - met removed via surgery and 1 year of leukine.  This year kidney removed with mel tumor.  September CT scan shows 3 tumors on lung - all less than 8mm.  My dr., Dr. Evan Hersh at the Arizona Cancer Center is recommending high dose IL-2.  I am hoping to get information from those who have gone through this treatment.  Any suggestions/help you can provide would be greatly appreciated.

Thank you,

Tina

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debbieVA's picture
Replies 9
Last reply 10/3/2010 - 10:15pm

MPIP family....

I got a call from Kurt's wife, Pam,  this morning.   This Warrior has been through so much.  

He has many friends here...and I just wanted you to send up a prayer for him and his loving family.  

Debbie Stage 4 NED

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Wendi Lynn's picture
Replies 2
Last reply 10/3/2010 - 10:55am
Replies by: DebbieH, Fen

Hi Everyone!

You are always so helpful, so here I am seeking help again.  I had a modified left neck dissection on 9/22 after a lymph node biopsy proved positive for melanoma.  Results are only the one lymph node was positive out of the 32 tested, so I'm very happy about that.  And I had a PET scan on 9/13 that was questionable on 3 lymph nodes in my arm pit.  My surgeon spoke with the PET doc (can't remember exactly the title of the nuclear doc) who said that the 3 in my arm could have been just enflamed.  With all that said, my oncologist said that if the lymph nodes were involved that we would need to do the interferon high dose and 11 month follow through.  I haven't seen my oncologist since before the lymph node biopsy (I have an appointment with him on 10/19). 

So, for those of you who have, sadly, too much experience with this, I'm looking for your opinions on treatment and timing of such. 

Thank you in advance for your words of wisdom! 

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skysar's picture
Replies 3
Last reply 10/2/2010 - 8:16pm
Replies by: Jim M., Jim in Denver, jag

I posted last week regarding the rash I developed either from IPI or antibiotics.  The 2nd treatment was scheduled for 9/29.  Doc decided not to give me IPI due to the rash but did give me the Temador.  My platelets are dropping so I have to have blood checked twice next week and we will go from there.  Rash is getting somewhat better so that is a relief.  Not feeling so hot today after taking two nights of the Temador.  I am on a total of 350mg.   Next treatment scheduled for 10/20 with tests this time.

Sue

Hotlanta

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Replies by: Jim M.

Hello Everyone, I have questions about if there are any other Choroidal Melanoma Liver metastasis patients on the site.

My husband was diagnosed in May 2010 with the liver mets and we have completed 2 rounds of chemo-embolization with ironotecan beads.

We are waiting on our CT scan results due Monday but meanwhile we ended up in the E.R. with edema throughout feet, ankles, legs, glutes.

We are told my husbands albumin levels are very low and that is causing the ascites and edema. We are told this is not a good sign.

Does anyone know of any natural treatments to help with this? We have had some success with elevation of the legs and lymphatic drainage.

We are scared and would really like to hear of any other survivors out there and how you are doing it.

Thank You

Suzie and Jerry     

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Bruce in NH's picture
Replies 20
Last reply 10/2/2010 - 6:49pm

Hi Friends,

I haven't posted for a while but have kept up with those of you like me who are participating in the compassionate use ipi trial program (10 weeks of 4 ipi infusions every 3 weeks). I've completed the first 10 weeks and my CT scans showed slight reduction in tumor size for two tumors in my left lung and center chest. I have been trying to get rid of these sites since diagnosed Stage IV back in December, 2008. You can get more details by clicking on my profile. In any case, I hope my PET scans tomorrow show some reduction in activity level within the nodes.

My options going forward would be a repeat of the ipi 10 week trial; surgery to remove the nodes (very high risk due to placement in the chest) and BRAF testing/trial. Hoping for the best, and my thoughts and prayers continue for all who fight this disease, especially for those caregivers who recently posted after losing their loved ones. Collectively we will continue the fight for you and for our children and grandchildren.

Hope and peace to all,

Bruce in NH

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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Joan C's picture
Replies 3
Last reply 10/2/2010 - 12:36pm

He was a big producer of shows like The A Team and The Rockford files.http://abcnews.go.com/Entertainment/wireStory?id=11777002

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