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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Rendergirl's picture
Replies 13
Last reply 7/2/2011 - 10:53pm

I have pre-op tomorrow and Tuesday I have my surgery. I'm having a tumo removed from inside my leg in back of the knee. They are going to use a nerve block, injecting me in the lower back, which I'm really scared about. I'd rather be put to sleep. They have to make sure the Melanoma hasn't spread which is why they're removing the tumor. I'm really nervous about the surgery and the pathology. I could use any good wishes and thoughts right now.... thanks.

 

Becca

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Hi Kevin

I was just wondering how your treatment is going on, hopefully still well? :-)

In case you´re not satisfied with the effect of your therapy, have you considered Ipilimumab?

It seems that my wife is a complete responder, thanks to Ipilimumab (and her positive mind).

I wish you the very best fellow warrior.

 

kind regards

willtolive

 

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Shelly in Switzerland's picture
Replies 2
Last reply 6/27/2011 - 9:54am

I am wondering about side effects of the STR. I have been wheelchair bound ever since the
WBR the middle of of March.
I begin the linac treatment (STR) this week, 5-10 doses. My left foot does not cooperate at ALL!

I want to fly to Seattle. Anybody out there who has regained use of their limbs?

Basically I am wanting to know length of recovery time after STR.
Am I crazy?

Shelly
There is no will but God's will. Today I seek his peace.

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H555's picture
Replies 3
Last reply 6/27/2011 - 8:05pm
Replies by: H555, Sherron, lhaley

My name is Ron Bassett-Smith, I'm 61 and will have surgery June 30th (the same day i retire ironically) to remove malignant lymp node(s?) from the inguinal area on my right side. I had a melanoma removed from my right calf 16 years ago, large excision, all tissue clean on the margins, regular follow up, no radiation no chemo. I was diagnosed with prostate cancer in 2005 related to Agent Orange exposure in South Vietnam in the late 60's. had surgery, then salvage radiation 2 years later and then was diagnoed with a biochemical recurrence in Jan of 2010. that one is slow growing, my psa scores are creeping up slowly. i'm very familiar with treatment, survival odds etc for prostate cancer. I've got a good oncologist at the Oregon Health Sciences University and for now see her annually till my psa scores hit a level that we've agreed will be the beginning of hormone therapy.

I found a lump on the line between my groin and my right leg 6 weeks ago, my primary care doc had a bone scan, CT scan of my chest, abdomen and groin and an MRI of my head and no tumors were identified. I was referred to the melanoma clinic/center at OHSU for needle biopsy on Tuesday and sure enough it came back as metastatic melanoma. I hadn't thought about the recurring in over 6 years. I'm having lymph nodes removed on June 30th and then likely interferon therapy in Salem - close to where i live.

We're kind of in shock. we had lots of plans for this summer, all of which are now on hold.  grandchild #2 is due in September, youngest son is in Kenya in the Peace Corps as of June 7th, for 26 months. I have lots to live for, am a bit nervous about what we might find out on Thursday but here's my assessment - tell me what you know, i'm on a similar web community for prostate cancer and have learned tons there in the last 6 years - 16 years between the 1st and 2nd occurence is good, no identifiable tumors is good. information after Thursday's surgery will tell us lots about how tought this is going to be. just thought I'd introduce my self as I suspect I'll be spending a fair amount of time here trying to understand the progression and treatement of metastatic melanoma. thank you.

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carol b's picture
Replies 13
Last reply 9/29/2011 - 7:10pm

I was wondering if anyone on here can tell me about having a baseball size melanoma tumor removed from under they arm. What all do they cut out and what am i to expect pain wise and recovery time. I am a little scared and concerned. Any comment will be appreciated because i have been looking it up on the computer on other sites and it seems like a horror story so i thought someone on here has had it done and could give me some correct advice.. Thank You in advance...

Carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Cspan's picture
Replies 12
Last reply 6/27/2011 - 9:03pm

My husband was diagnosed in January with scalp melanoma,when they did his PET scan they also found lymphoma (CLL) low grade and except for a few swollen glands- asymptomic.

It was very deep 6mm melanoma but he only had one sentinal node with micro mets. Because radical neck surgery didn't really improve survival and the interferon offered didn't really show much evidence of benefit we opted for watch and wait.

He went to an intergrative medicine specialist and has been working to boast his immune system naturally. Nothing crazy just organic foods, fish oil, green tea etc. His last bllod work looked great LDH went down from 200 to 143

Last week he found a lump at the sentinal node incision line...it came back positive. We are having a really hard time and confused....this hasbeen the worst weekend of our lives. I don't know where to turn...should we go to a melanoma center? We live in Portland Oregon. Also, I don't know what to do for him emotionally and I guess right now this is our worst problem. He isn't sleeping or eating much and has a racing mind. He is fixated on getting his affairs in order. Am I in denial?

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/26/2011 - 5:32pm

If during surgery while cutting out a tumor with wide margins, the surgeon "unknowingly" cuts into another tumor and only half the tumor is remove because it was at the wide margin confirmed by a pathology report , can anyone speculate or have knowledge of what happens to the open, penetrated cancer tumor left in the body. Do cancer cells fload into the blood/lymph system because the tumor has been penetrated? Your opinion would be appreciated. This scenario has happened to me and I am am trying to deal with it.

Thank you for taking the time to give me your  opinions

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Nebr78's picture
Replies 6
Last reply 6/29/2011 - 3:06am

I have been taking radiation for a mass that has entered my spine.  Last treatment about June14.  Two days ago I started  having pain in lower back and it has gotten worse.  About a 10 on a scale of one to 10.  I see doctor on Monday.  I  am taking Morphine and Lo-tabs for pain.  It don't quite do it.  I fear that the radiations didn't kill anything and it is in spinal cord.

Has anyone had this situation?

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Lisa13's picture
Replies 3
Last reply 6/26/2011 - 7:20am

9 days ago, I started my adventure with dacarbazine.  Other than 2 pretty bad days, this drug is easily tolerated.  I go out everyday and play with my daughter and still have energy when I come home to clean house.  The onset of symptoms can begin 5-7 days, so I think I've experienced the worst of it on days 5 & 6. If this drug work for the mets in my lungs, I could tolerate this for months.  I know this is not a favourable treatment, but it works for some people otherwise they wouldn't be using it at all.   No treatment for melanoma lasts forever, so if that was to buy me time until I have to use something else, I'll take it anyday!

I hope to be able to post a success story as I've seen 2 other people now post based on this drug.

Best of luck to all of you!

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Hello again Friends,

Here is a brief update on my stage IV melanoma journey. You can read more details in my profile which I just updated. I recently completed the second pass of the 10 week Ipilimumab (now Yervoy) clinical trial, and unfortunately the chest wall tumor continues to grow. Maybe in hindsight that's good news as a prerequsite to enter the new t-cell targeted therapy clinical trials now in progress at the National Institute of Health in Maryland require a minimum of 2 cm. (mine is about 3 cm.). Dr. Steven Rosenberg is heading these trials, and my oncologist has submitted me as a candidate. I am waiting to see if I will be accepted into the program. You can learn more about these clinical trials by viewing the profile of Dr. Rosenberg at NIH. I do not know which trial I would participate in as there are 10 listed, but I am hopeful I qualify for at least one of them.

If you have recently participated in one of these trials or are now actively in these trials, I would be interested in hearing about your experience either on the board or via email. I have heard that patients can expect to see success rates of 50-80% vs. the 20% or less of other therapies I have tried and failed. So I remain optimistic and confident that this time the beast can be broken - time will tell. I will post again when I get the much anticipated call from NIH for acceptance.

Thanks and I wish all you warriors and care givers a great day,

Bruce in New Hampshire, USA

Stage 1 - Oct. 2000; Stage 3B - Sept. 2003; Stage 4 - Dec. 2008

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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Anonymous's picture
Anonymous
Replies 24
Last reply 4/10/2012 - 5:57pm

My appt. was cancelled without explanation but that he is not with the clinic.

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Boos Mama's picture
Replies 5
Last reply 6/25/2011 - 5:55pm
Replies by: Anonymous, Ranisa, DeniseK, Boos Mama, MichaelFL

I found a Melanoma last year, 2010, when I was pregnant with my son. It was early, in situ, minor surgery, no big deal.
My sister and my cousin have also had Melanoma. Sunday night, 6/19 I found a mole on the outside of my knee that I know had not been there. It's about the size of a pencil eraser, more red than brown and slightly raised. Last night, Friday I found another about five inches away almost identical. I know it had not been there. I also had some numbness in my toes recently that I just attributed to my migraines, probably a coincidence.

It's Saturday. If they are fast growing melanoma, they are growing really fast. I have had the service page my dermatologist but so far no answer. What would you do???????

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I am hoping to find someone who has had a similar situation. My precious 11 year old little girl has been seen by 2 dermatologists (one was for second opinion) for a small black irregular bordered lesion onher lower left eyelid-where one would apply eyeliner. Due to past photo's we know that the lesion came up in the last 28 days. The first Dermatologist terrified us all because she had the whole dermatologist office come in and "look" at the lesion. She (as well as the rest of her colleages) informed us that this lesion looked very suspicious for melanoma and it needed to be fully exised ASAP. Second pediatric dermatologist said the exact same thing. She is scheduled to have it removed this Wednesday. I would like to insert a picture but I can't get it to work. Any others have any similar situations?
Susan

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/8/2013 - 3:53am

Hi all. First time poster here, although I've been following the forum occasionally for some time. Perhaps my question is a bit dumb but please bear with me and help me clear up some things. My 70 year old father is a stage IV melanoma victim, with mets in his lungs, liver and lymph nodes. He was first diagnosed in 2009 as stage III and had had subsequently removed his primary tumor and some lymph nodes in his neck.

He was now given a choice of treatment that would consist first of dacarbazine and then of ipilimumab (if necessary, I guess). The thing is, my father is extremely negative towards any chemotherapy and doesn't even want to hear about it. He insists he will beat the disease on his own terms. It's really his body, his illness and ultimately his decision, and I think it ought to be respected, but on the other hand I also try to explain to him that ipi really doesn't work like classical chemo, and that there are many people out there who benefited wonderfully from this drug. He might take my word for it when I present him with some success stories from this website. However, his doctor maintains that the only possible way of treatment is to administer dacarbazine first, and only later ipi.

Is this true? I've read on the Internet that this combination is a standard procedure "one-two" punch, but can't a patient demand to undertake ipi treatment alone if such his desire happens to be? I also find it a bit counterintuitive to administer a cytotoxic drug first, with all its detrimental effects on the immune system, and only afterwards apply ipilimumab, which is then supposed to work through this compromised immune response. Wouldn't a more logical sequence be ipi first, dacarbazine second?

Again, I apologize for my ignorance of the subject. Any clarifications will be greatly appreciated.

I also wish best of luck to all of you battling this disease. Stay strong! Whenever I read a success report, I want to just high-five that person. :)

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Nicky's picture
Replies 3
Last reply 6/25/2011 - 10:47am
Replies by: jimjoeb, Nicky, Carol Taylor

Hi everyone, well I was admitted to hospital to get a wide excision on the melanoma in situ on the right upper back and fortunately the surgeon discovered another suspicious mole on the left upper back which has been excised.  so a little bit sore but recovering well from both surgeries.

This is now my third melanoma primary over 11 years.  I am still currently Stage III and I hope to remain that way.  It certainly gives you a reminder not to drop the ball when it comes to regular check ups.  It was six years since my last melanoma and I still feel that my survival has been mostly due to early detection and being proactive with health professionals

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