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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Banu's picture
Replies 7
Last reply 7/12/2011 - 3:23pm

Hi everybody,

Because my father could not get access to Yervoy and lost a lot of time waiting for it, he was supposed to start carbo/taxol on Tuesday, July 5th. However, we had to go to ER on 4th of July, because my father could not have a bowel movement after 5-7 days and was very bloated and in pain. When the ER doctors checked the blood, they found out that his red blood cell count is very low (5) and they admitted him to the hospital for blood transfusion and treatment. So, he could not make it to his chemo appointment and his doctor said that we need to wait a few days and see what is happening with him before we can decide whether to proceed with chemo, Yervoy or any other option that may be of help to my father.

In the meantime, the primary care team at the hospital suggested that it is not a good idea to resuscitate my father if needed, because his prognosis is very poor. A doctor even told me that it would be better for him to pass away from a heart attack than endure cancer. When I told the doctors that we don't want to give up and try every possible option until the end, they advised me to be realistic. I know that the odds are slim, but there are those who were blessed with a response when it was least expected.

My father has been weak in the last few days and was not able to walk on his own yesterday and today. He is not using any pain medication and did not need one until now. He is not giving up and wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

My father is quite weak right now and was not able to walk on his own yesterday and today. He is not giving up though and I believe he wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

He had five units of blood transfusion and his red blood cell count is around 8.5.

His LD is 716 U/L, ALT 27 U/L and vitamin D > 135.

Doctors say that his LD levels are too high and that they don't want to remove tumors unless it is obstructing an organ.

I want to find a treatment that may be of help to my father. I need to get him stronger first, so that he will qualify for more treatments. Are there any suggestions? Would you recommend any supplements, products or treatments?

Thank you all for your guidance.

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StevenK's picture
Replies 9
Last reply 7/12/2011 - 2:58pm

There's a dark spot appearing in my excision scar. It's not a scab and it is really scaring me because it seems to be exactly where the orginal lesion was. The wide excision came back with no signs of mm, so how is this possible? Could mm be back just three weeks later? I called my doctor, but he went home at noon. Have to wait until Monday. Is there something else it could be? Blood beneath the skin? Has anyone else had dark spots in their excision scar that scared them?

Thanks in advance for your reply,

Steve

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/12/2011 - 2:25pm
Replies by: washoegal, Anonymous, Carver, ValinMtl

Hi,

I am a newbie & need you advice.

I had sugery to remove a 2cm tumor from my upper thigh 4 weeks ago. The doctors needed to go down into the facia of the muscle to get clear margins.

He did NOT put in a drain. I got  a very large seroma (fluid build up) on my incision that is not going down. The fluid is  around & on  my incision & it is very sore & sensitive.

On top of everything else, last week the seroma got infected so the doctor used a needle to drain the seroma to do a lab culture & put me on atibiotics.

I finally got some relief when he took out fluid for the lab culture but within hours the fluid came back. When I sleep at night with my leg elevated, the next morning the fluid has NOT gone done.

I have a appt with the doctor tomorrow so I would appreciate any experience/advice with seromas you might have. Is it too last to put in a drain? The doctor told me that draining the fluid out with a needle, puts me a risk for infection again.

Thank you for taking time to read my post & replying.

mary

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/12/2011 - 2:19pm
Replies by: washoegal

Hi,

How are you doing. I have not seen you post lately. Are you getting treatment & seeing Dr. Hamid.

Look forward to you posting

Mary

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Linny's picture
Replies 4
Last reply 7/12/2011 - 9:49am

Today I had an ultrasound done to investigate an abnormality that was found near the surgical site of my lymphadenectomy duing a CAT scan. When I posted my initial note your words of encouragement helped keep me calm through the wait for the appointment. Can't even find the words to let you know how much that meant to me.

I had good news today! The abnormality was nothing more than a bulging blood vessel -- a result of the sugery I had done back in January. I felt a huge sense of relief when the tech said she was not able to spot anything. It took both her and the doctor to find the culprit. The Doc said the bulge was nothing to worry about and that it was part of the healing process. He also confirmed that I have absolutely no lymph nodes left in my left arm pit. The surgeon apparently got them all. :-)

So I'm still NED and pray I remain that way.

Linda

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Well unfortunately I was right. One was a pseudocyst with gelatinous material and no melanoma. The second was falling apart as the surgeon took it out and was. Reported as friable with fatty tissue and sheets of melanoma cells..

1 week post op I have a lump in the region where the bad lump came out. The oncologist thinks probably a hematoma related to surgery. Too fast for a 4-5 cm tumor to pop up. It also appears bruised on skin surface. Of course I'm worried about that tumor falling apart and having melanoma cells.

I had a long talk w D Samlowski who discussed treatment options. He thinks 1st choice should be biochemotherapy w chemo drug (which I can't remember name of) along w IL-2 and interferon. I've just started to read a bit and it sounds like there are different regimens. His regimen was 4 days in hospital ICU with above drugs followed by 3 injections of low dose interferon the following week. Two weeks off and repeat 3 more times.

Has anyone done this version? I will find out the chemo portion tomorrow when I call his nurse. Did it work? I don't think the month of high dose interferon did much since this came up so soon ( or maybe it's because I couldn't tolerate or afford the other 48 weeks). This will be at a lower dose and I will just deal with it no matter as I would really like to kick this melanoma to the curb and move on.

He is reserving other treatments in case we need them later.

Any thoughts? We didn't discuss radiation, but I have been thinking maybe the should be done as well? Or before biochemo?

Julie in Las Vegas

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Shelby - MRF's picture
Replies 1
Last reply 7/11/2011 - 11:32pm
Replies by: JerryfromFauq

A Washington, D.C. area television station contacted the MRF for assistance in setting up an interview about the dangers of tanning.  The station is looking for someone to interview about why they stopped tanning.  The reporter would like to find someone in their 20s who is available for an on-camera interview in the D.C. area.  The reporter is particularly interested in speaking to ex-tanners who have received a melanoma diagnosis.  If you’d like to be interviewed, please email Jenni@JonesPA.com by Wednesday morning. 

Thank you for your help!  We appreciate your assistance drawing attention to this issue. 

Shelby - MRF

 

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emilypen's picture
Replies 5
Last reply 7/11/2011 - 9:12pm
Replies by: Terra, CLPrice31, lhaley

Hey All,

It's been a while since i've posted. It's been a rough month or so.

My hubby failed of the braf inhibitor he was on and we've been waiting the required 28 days so he can start IPI.

During that month tumours grew quite a bit, a few new ones popped up. He had to have some radiation to his jaw to control a lesion there and hopefully stop a soft tissue tumour that was pushing around a few teeth.

Plus we moved home to Canada and found out we're pregnant! 

So today is the day! Can't wait to actually be "doing" something instead of waiting.

Curious as to what the fasted is that anyone on IPI has seen improvement? 

 

thanks,

Em

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lhaley's picture
Replies 7
Last reply 7/11/2011 - 2:34pm

CLEAR!!!   That means I'm now 5 weeks NED!  However, there is always a however, my onc is leary because the location is so close to the last recurrance, and that recurrance is just .5 inches from the one before that. They are still going to excise the lump entirely to be sure.  I'd rather proactive instead of reactive. Radiation will start again once the lump is entirely excised.  They didn't excise the first time because we had decided since surgery had just been 4 weeks before that if it showed to be mel I was going to go systemic with a low tumor burden.

So, until proved otherwise.... I was NED at my stage IV 5 year anniversary!! 

Linda

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benp's picture
Replies 5
Last reply 7/11/2011 - 8:38am
Replies by: shellebrownies, Lisa13, benp, Anonymous

Hi, 

 

I have recently been diagnosed with stage IV melanoma, mets in brain and smaller ones thoughout my body. Today I learned I was BRAF positive, so will hopefully be joiing a BRAF inhibitor trial starting early next week.

 

On reading the documentation for the study, I learned I could not eat grapefruit or oranges etc, must avoid herbal supplements (curcumin, geistein EGCG etc.). Does anyone know why this is? I could possibly imagine some reasons. I was thinking of doing IV vitamin C, though this obviously rules this out.

 

I would love to know if it is indeed harmful to be taking supplementation while on the trial.

 

Thank you for your help, 

Ben.

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Charlie S's picture
Replies 4
Last reply 7/11/2011 - 8:21am
Replies by: Carol Taylor, Anonymous, washoegal, Charlie S

A question was posed to me the other day by a  seeking melanoma patient for which I had no effective/relative  answer and  therefor would ask for your collective wisdom and input.

Here was the question:  " By all clinical indications, I am about to progress to Stage IV and I am personally scared to death.  My second marriage is not all that great anyway, but this is putting an additional strain on it and I do not know what to do to reconcile my marriage and my personal fears"

 

It wasn't exactly like that, but pretty close.  Though I have been there and done that, my insight might not really be relevant by todays perspective.  I'm just glad I am past this, but the person who asked me is not.

 

So, in the hopes that this person might read your collective wisdom. rather than my out dated point of view..................how  bout some input?

Cheers.

Charlie S

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Rebecca and Bob's picture
Replies 3
Last reply 7/11/2011 - 7:13am
Replies by: lhaley, Carol Taylor, Lisa13

 

My husband is going in for scans next week, does the anxiety ever stop? Praying for NED to continue. It will be 2 years since his last surgery. 4 years with all of this so we consider ourselves lucky.

We would like to continue with the bear attack story for now :) when it comes to our 5 and 7 year old. We can always tell the real story when we are old and gray.

 

Rebecca

 

Believe

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Netlla's picture
Replies 19
Last reply 7/11/2011 - 3:14am

Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph.  He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other? I just feel like one of the two are his last option, he is getting very sick, and I just don't want to make the wrong decision on treatment. Please help! 

There is always hope.

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H555's picture
Replies 5
Last reply 7/10/2011 - 1:38pm
Replies by: jimjoeb, H555

in the femoroinguinal area of my groin and pelvic node sampling and sartorious muscle flap created. From discovery to diagnosis to surgery has been a blur and now I'm in the research phase of this chapter of "cancers I love to hate"

I was diagnosed a few weeks ago as having a 2nd occurence of melanoma - first one was on my right calf 16 years ago and the subsequent surgery to remove the margins was deemed successful. This time, about two months ago, I found a hard painful lump in my inguinal area at the same time that I was having an annual exam in preparation for retirement. CT scans, MRI and bone scans were all clear. needle biopsy a coupe of weeks ago confirmed that the mass was malignant melanoma. This is so ironic in that I've been battling prostate cancer for  more than 6 years and was diagnosed with BCR in january of 2010. that one is growing slowly with only clinical evidence of the cancer.

The malignant lymph node - the size of a ping pong ball - was removed on last Thursday, June 30th, the first day of my retirement... The surgeon sampled lymph nodes in my groin but didn't expect to find any malignancy in any of them. He will call me later this week after consulting with the tumor board at OHSU in portland and we see him on the 12th to go over treatment options. He told me the day after the surgery that I am a classic stage 3C. 

I think I'm healing fairly normally, ive had 5 other surgeries to compare to this one. the fluid in the tubing for the JP pump is kind of orangish yellow now, 5 days post op. also doing lovenox shots daily till the 12th.

I'm looking for info on length of time to heal, i'm still taking strong pain meds every 3 t 4 hours, i can now put a bit of weight on that leg - i'm using a walker- . and experiences of others on this board to help me dial in what we can expect in terms of treatment (Interferon with or without radiation, and others), duration to the extent any of us really can speculate about that reasonably. thanks for sharing any experience you've had with this chapter.

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mom3girlsFL's picture
Replies 3
Last reply 7/10/2011 - 1:25pm

Good Morning all,

I was off enjoying a much needed vacation with family in the mountains of Georgia this past week and had a question.  Since my radical groin dissection (Sept 2010, I think) I have had very minimal swelling - surprising my surgeon even.  I did end up seeing a lymphedema specialist who released me after 4 visits b/c I really wasn't having any issues.

Fast forward to vacation and out of nowhere I am swelling pretty good.  From my toes up to about my knee, possibly a little further up.  Elevating my leg is not helping much.  And, of course, since I have had no issues I did not bring my compression shorts on vac with me.  Now that I am home, I've elevated and put on my shorts, with little improvement.

Of course I am worried something may be going on.  Anyone with similar experience?  Should I call the lymphedema specialist tomorrow or my onc and report the new symptom?

Thanks, as always, for your help.

Laurie

Do not fear tomorrow, God is already there.

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