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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deardad's picture
Replies 5
Last reply 8/5/2012 - 11:48am
Replies by: Anonymous, Jeff's Mom, saddaughter, deardad

My dad is now in a wheel chair, he has no headaches buts needs mum to carry his weight to bathroom etc. He'a had this shocking flu that robs him of sleep at night and has for the last week. He's so tired and nods off during the day. Its so hard because I know he is dying and it's so hard to know whether it's the cancer or lack of sleep from coughing all night that's making him tired.

We have booked in to see the neurosurgen on the the 16th of August for SRS. He looked at dad's MRI and wants to talk to him about SRS to try to prevent further paralysis. Personally I'm not confident he'll make it to that appointment the way things have declined so much in a week.

Sorry to give you all the this blow by blow description.

Palliative care have been fairly hopeless in getting drugs to us and mum is so determined he will die at home under her care.

I called a GP in today to see if dad could have some sleeping tablets and he recommended half dose (he's never had one before).

My bro in law said not to give it to him with bronchitis, he needs to cough.

I'm not sure what to do now...take the pill or not? He's slowing down....does anyone know what I should expect roughly from now on?

Can't believe I'm now in here in this dark place that I always put away in the future.

Thanks everyone

Nahmi from Melbourne

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Gene_S's picture
Replies 1
Last reply 8/5/2012 - 11:33am
Replies by: Linny

Anyone know how Yoopergirl is doing?  I believe her last post was in July.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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dawn.spiering's picture
Replies 3
Last reply 8/5/2012 - 6:37am
Replies by: natasha, o2bcheri, Swanee

Hi my name is Dawn. I have just been diagnosed with melanoma . In 2007 I had surgery for uterine leiomyosarcoma and there was no adjuvent treatment. In 2008 I noticed a small lump in my neck and applied for insurance coverage and denied because of previous diagnoses, for the next three years I've been fighting for state insurance coverage and after quitting my job and allowing me and my disabled son to become homeless. I finally recieved medi-cal. The lump is now huge about 5 by 5 by 4 cm and is pressing on the caratoid artery, which means alot of pain. I am waiting on insurance approval for surgery which is scary sense Molina is fighting on paying any test the doctors need to help me. I think they are hoping I croak before approving surgery :(. So thats my history.

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Jennholbert's picture
Replies 8
Last reply 8/5/2012 - 5:27am
Replies by: LynnLuc, natasha, Jennholbert, Anonymous, jag, AngelaM

The report looks good with one little exception. I will see the oncologist in two weeks for rond two.

Here are the results...
Malignant Melanoma
Type: superficial spreading malignant melanoma
Clark's Level: II
Thickness: breslow of .26 mm
No ulceration
Dermal Mitotic Rate: 0 (this really shocked me!)
Lymphomas ulnar space invasion : none
Precursor Nevus: present
Biopsy Margins: the lesion extends close to at least one radial margin: wider margins are indicated

It appears I had a partial regression.

We found another very little spot on the palm of my hand that will need to be checked out.

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MeNDave's picture
Replies 23
Last reply 8/5/2012 - 2:08am

I know I haven't been on in awhile, but Dave is not doing well.  The chemo combo has stopped working, and although we got him to his first IPI infusion on Thursday, by Saturday it was apparent that it has spread to his brain.  I called the rescue squad, and he was admiited on Saturday.  The good thing is, he is not in any pain and the tumor is affecting his short term memory, but not his long term... so he knows we are all there with him.  We want to bring him home, but our local hospice does not support IV pain management, and his doctors have said they will keep him as long as they can so they can coordinate the pain control.  Our family is surrounded by a wonderful medical team that sat and cried with us, and so many friends that have helped in so many ways.  Dave has touched so many lives, that I know no matter what, me and the kids will be ok.

I am so thankful for everybody on this board,  Dave is such a fighter, and I ask for prayers for peace for him.  He is a wonderful person... I wish you all had a chance to meet him.

Much love to all of you, and please remember, don't ever give up -

Maria

Don't ever, EVER, give up!

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Anonymous's picture
Anonymous
Replies 13
Last reply 8/4/2012 - 10:01pm

I recently had a very dark mole removed. I have lots of moles and this one definitley looked different. About the size of pencil eraser. I had punch biopsy and dr took margins and I received 4 stitches. She also talked about plaque. She called one week later and said they could not rule out melanoma so they are sending it on to expert in California. Wondering how worried should I be? Dr in California is the worlds leading authority on melanoma. Is this just for liability? Not sure what to think.

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I'm still reeling from results I received late yesterday. I'm a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I'm reaching out on any suggestions, recommendations that anyone may have. Thank you.

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nancyclay68's picture
Replies 4
Last reply 8/4/2012 - 2:46pm
Replies by: krissy424, Anonymous, aldakota22, natasha

As I await staging for the WLE I had on a positive punch for MM, I thought I'd pose a question.  I've heard rumors that birthmarks can or might sometime become melanoma.  I was born with two dark brown birthmarks, one on my inner left thigh and one on my outer right bicep.  In my thirties the one on my arm began to slowly disappear until it was gone by age 40.  Fast forward to age 44 and in 8 months I go from a tiny black dot (think ink mark) to a 6 mm wide black lump with red halo that came back MM.  Interestly, in the exact location of the former birthmark.  Coincidence?  Just curious if anyone else had an experience like that.

Prayers and peace to all battling Mel.

Nancy

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sjl's picture
Replies 5
Last reply 8/4/2012 - 1:52am
Replies by: sjl, cliff61, Anonymous

My husband was diagnosed with mucosal melanoma of the nasl cavity in April.  He's had surgery for it twice with clear margins the second time plus the removal of several lymph nodes, one of which was malignant.  He's at stage 3:  T3c, N1, M0.  In addition to that they found another primary cancer, non small cell squamous in the lung. 

They've held off on radiation while they figured out the lung and he is scheduled to have part of the lung removed in a couple of weeks.  Now, everything is up in the air again.  He woke up Sunday morning with a chain of lumps along the neck and swelling.  It has gotten worse.  We saw a doctor yesterday who said it's melanoma that has spread to the skin.  Biopsies were taken with a rush order and we will get an appointment ASAP after the results come back.   I can't believe how fast those bumps showed up.  We had just seen a doctor about a week earlier and asked about a small swelling at the top of the incision in the neck and were told that it was nothing to worry about.  We were told repeatedly yesterday that the delay in radiation has nothing to do with the melanoma coming back like it did.  I thought that's why we were supposed to do radiation in the first place!  I know that radiation doesn't always work but what hope is there for my husband now?  They are talking about doing a shorter but stronger course of radiation than originally planned and possibly radiating the lung now rather than removing a piece.  He's being checked for cKIT for the possibility of Glevec and maybe another clinical trial.  The doctor we saw yesterday had asked for the testing for cKIT back in May and we found out yesterday that it was never done.  He's asked again.  We are dealing with UPMC and the Hillman Cancer Center so we've got good doctors but even there, you have to stay on top of things yourself. 

Any suggestions?  Is there any hope?

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Hi Kevin,

 

I have been away from the board & trying to catch up on what's happeneing!

I have been praying for you all week because I knew you would be having your MRI & Scans.

Please post an update when possible.

Stay Strong!

MaryBeth

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allinhughes's picture
Replies 6
Last reply 8/3/2012 - 3:37pm
Replies by: EmilyandMike, KMT2003, Janner, Anonymous, natasha

I just don't know what to think, I really need to hear some positive thougths and stories please, I am 35, 3 kids, was a sun lover and had a mole removed from my back that turned out to be Melanoma, it is draining to my left inguinal lymph nodes, they are calling to schedule my surgery on Friday and I just don't know what to expect and what is gonna happen, my Dr. said don't worry you are not gonna die, you are young and healthy and you cought it early, yet the more research I do and the more i read the more freaked out I get,

How can you live in the future if you are regretting the past and fearing the future, I am here now...

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chalknpens's picture
Replies 3
Last reply 8/3/2012 - 1:59pm

I am new to melanoma. Since the end of May, I've had five sites biopsied and all have come back with something: two were basal, one squamous, and two melanoma. I've had three Moh surgeries on one melanoma site, two on the second, smaller site, and full excision on the two basals. The squamous will be either excised or Moh when the stitiches come out of my second melanoma.  I'm in my sixties, and never had stitches before this. Now this summer, in the past eight weeks, I have over a hundred. It has been non-stop, with only a few weeks in between surgeries while stitches heal. Then back for the next. The stitches are all still recent, and ugly, and obvious. My back looks like it bears the "Mark of Zorro." So now does my arm.

I also have multiple sclerosis, and serious depression as a result of the MS diagnosis, which took me out of my classroom earlier than i'd planned. I've always been heat intolerant, perspiring heavily and looking nervous even when I wasn't. This, too, over time, added to the stress and anxiety that became depression. I was injecting a medication I didn't have faith in for four years, and finally last year, with the help of a counselor and anti-depressant medication, i was able to 'just say no' to the prescription for multiple sclerosis, and had just begun to feel more of my old, confident, assertive self. But it was too late to save my career. Little did I know that melanoma was yet ahead. I loved my job. I loved my colleagues. I miss them.

I'm from a large family. Some of my siblings have passed, as have my parents. But I still have five siblings. Most are a few years younger than I am. They continue to think that I can handle it. Only my husband truly "gets it." He is my rock, and always a full partner in my medical issues.

I never did manage to help my sisters understand that MS limited my energy, made my comfort level difficult to attain in summer, and cut into our financial resources. They are aware of the melanoma now, and yet still plan family get togethers on sunny beaches that are long drives away.

It is so defeating to know that there will always be a 'next time' for surgery, and stitches, and co-pays. And there will always be another social expectation of a sunny beach get together.

I guess I just needed to vent this in a safe place. It is so frustrating. They are all in their fifties or more. They are not uneducated, and not uncaring. But they are so dense when it comes to what they believe i ought to be handling and still showing up socially. I just want to walk away from them totally. But they are family. They were 'hurt' a year ago when i asked them to stop inviting me out to lunches with mediums at expensive restaurants.

I don't need lunch with a medium. I need time to sleep, and to save money for medical bills that are never ending. I want to spend awake time with my husband, or with my grandchildren and adult children. I am so fed up with them. They just don't get it.

I am not perfect, but I am enough.

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TSchulz's picture
Replies 21
Last reply 8/3/2012 - 1:12pm

I am a little superstitious about sharing good news but since I look to this board for inspiration as much as information I have to share the news I received last week.

In May, I completed treatment at NIH on the randomized trial of TIL cells followed by IL2 with standard lymphodepletion OR TIL cells/IL2 with standard lymphodepletion plus total body irradiation.  I randomized to the arm of the trial that did not include TBI.  As many of you know, the treatment was very difficult but the NIH team was amazing and got me through it.  

I returned in June for my one month follow-up scans and received the news that my tumors had decreased in size an estimated 54.2%.  Huge news!   Then last week, at 2 months, scans showed they are approx. 70% smaller than before treatment and no new tumors were reported - equally important at this stage.  After receiving a big hug from my research coordinator she said that there was a lot of good news shared in clinic that day.  

I know my story does not end here but we are hopeful to see this trend continue.  This is the first good news (concerning melanoma) we've had in over a year so we are celebrating and looking forward to a brighter summer!

I wish all the best to everyone dealing with this disease - we need to see a bunch more NED in 2012.

Troy

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mom3girlsFL's picture
Replies 6
Last reply 8/3/2012 - 11:53am

Hi All,

Haven't posted in a long while - just wanted to check in and share AWESOME news!  NED is once again a visitor in our home.  CT chest, abdomen, and pelvis clear as of yesterday!!!!  Almost 2 yrs NED now after radical groin dissection with lymph node involvement in late 2010.

Still get scanxiety, still waiting for our world to fall apart again, but trying to remain positive and hopeful.  Mel will always be in our life and some days are more difficult than others to cope but still hanging on!

Keep strong! Keep fighting! Know that you are all prayed for each and every night!

Laurie

Do not fear tomorrow, God is already there.

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chalknpens's picture
Replies 8
Last reply 8/2/2012 - 8:46pm
Replies by: jfergusfl, chalknpens, Anonymous, Janner, natasha

I've read a few other posts here, and learned that some here have had a second melanoma site, as I have. My question is does it matter that mine was found a month later, while others are found years later?

I had my second 'slow Moh' surgery today. The surgeon noted that this site, as the first, is an atypical site with undefined borders. It took three surgeries over seven days for the first site, and then the wound was declared malignant-free with clear borders. That site required over fifty stitches to close, and is now healing with stitches removed. The second site is one I'd questioned and so it was biopsied on a follow up visit a month after the first.  Both sites have been visible for about two years, waiting for me to finally have the courage to see a doctor who could biopsy them and recommend surgery based on the malignant melanoma finding.

Have others here had multiple "primary" sites discovered at the relatively same time? Does this have any meaning as to metastasis? I'm guessing that more sites will be identified when I return for another skin check. I have half a dozen 'pre-cancer' sites presently healing from cryosurgery, and not yet healing well (it's been 8 days) and think some of them may be cancer, too.

Please let me know if you've had multiple melanoma sites identified at the same or nearly same time? Mine are on separate body parts (back and arm.)

I am not perfect, but I am enough.

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