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
Replies 12
Last reply 11/11/2014 - 10:08am
Replies by: oldblue, Squash, Ginger8888, Annalive, Anonymous, JustMeInCA, Janner

My father had his primary melanoma tumor removed in May 2014 by his general practioner. The spot was on his trunk. Once the biopsy confirmed it was melanoma, he was then referred to a general surgeon to have larger margins removed. In hindsight, he should have been referred to a medical oncologist for surgery rather than the doctor that did the surgery. At his first visit to a cancer center he was told the stage was a 'risky' IIC. On the Breslow scale it was a Stage V and a Stage IV on the Clarks scale. At the first visit, the oncologist told my dad the treatment options for melanoma were not great. The treatments often have harsh side effects without a lot of proven success stories to show they are succesful in extending life. Last month he had an axillary dissection to remove lymph nodes that were detected in a recent scan (the lymph nodes were on the same side as the orginal tumor and under the armpit area). The biopsy of the lymph nodes were positive for 3 lymph nodes with one being fairly large. His cancer is now classified as a Stage IIIC.

Last week he had a visit with the radiation oncologist where it was suggested he has radiation on the trunk where the original tumor was removed extending up to where the recent lymph nodes were removed. He was also told the chance of the melanoma spreading to the brain was fairly likely. He meets with the radiation oncologist later this week as well with the chemo oncologist to discuss treatment options.

My father is in 70's. He is still active (despite having a bit of a hard time recovering from the two surgeries listed above). He also has the following health concerns: high blood pressure, enlarged heart, hardening/calcifications of the arteries, gallstones, cyst on a kidney, colon diverticulosis, background of pulmonary emphysema, small lobe on lung (too small at this point to determine on the PET scan if it's cancer) and bronchiectasis.

While I wish my father would get a second opinion (going to a hospital where there's more of a focus on melanoma), I don't believe he will. When I read the messages on this board, there are obviously treatments that are working for lots of people and I would like to think there's a treatment option that is suitable for him.

I'm curious if any of you have relevant information for someone in a similar situation. After we watched my mother pass away from colon cancer 5 years ago, we know that quality of life is something we shouldn't take for granted.

My questions are: given the area they want to do radiation on, how tough are the side effects - 6 weeks for 5 days a week? I also question why they are wanting to do radiation since he's been told he has an agressive form of melanoma and the radiation is only treating a targeted area. I believe they will also suggest interfuron as a treatment option. The oncologist has already said the side effects can be tough and many people aren't able to tolerate them. For someone around my dad's age with less than perfect health, are there many success stories that show it works without having harsh side effects? Should my dad deny any further treatment, do you know of studies that show how long it takes for the type of cancer he has before there's a recurrence? Should a recurrence happen, is there typically an extended amount of time before the cancer causes such side effects that it's hard to go about your daily life?

I know some of my questions aren't easy to answer but hoping someone in a similar situation has information to share. I'll be going to the doctor with my dad later this week and want to make sure I'm helping to ask the right questions. There's a lot of information to find online but it's when I'm trying to combine multiple aspects that it's harder to discern the information.

Thanks for taking the time to read this.

 

 

 

 

 

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Ashley's picture
Replies 9
Last reply 11/6/2014 - 11:44am

Hi Everyone,

 

I know I'm getting ahead of myself, and and should live for the moment with happy thoughts, but my dad who is stage 4 just had some incredible scans on a nivolumab/lirilumab trial.  They are only the first set of scans, but his LDH levels are continuing to decrease and are almost in the normal range, which makes me really think that his scans are going to continue to look great.

 

My question is around experience with longevity of PD-1 therapies.  Do they continue to work?  I realize that this is a combo trial, but assuming its the PD-1 that's helping him out, should we expect things to stay good?  He even had a small tumor in his brain shrink, which leads me to believe that at least one of the drugs cross the blood/brain barrier.  

 

Just looking for other people's experience.  I know BRAF drugs tend to be short lived, and then melanoma comes back aggressively...wondering if we should expect the same with PD-1.

 

Thanks,

Ashley

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JimS's picture
Replies 5
Last reply 11/4/2014 - 2:29am
Replies by: JustMeInCA, JimS, casagrayson, Anonymous

Hello,posted on here a couple weeks ago about my mom having something removed from her arm and her being very nervous about what it was.After talking with the kind folks on here and others,we had her calmed down and waiting for biopsy results.Well,it has been over 10 days and no word so she called the dermatologist today.They said the results would be delayed an extra day or two because the lab wants to do extra tests and stains.The lady said this was neither good nor bad.They just wanted to do extra tests.Well,needless to say,my mom is panicing worse thean ever now."Extra tests?" she told me."That cant be good."She's freaking out bad.

Anyone heard of this?Is it common?Thoughts on what to tell my mom?Thanks,everyone.

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Wolverine's picture
Replies 4
Last reply 11/4/2014 - 4:43pm
Replies by: Wolverine, kylez, Janner

Hello,

 

I am Stage 3C and have been since July 2012.  Would being at this stage disqualify me from being a kdney donor?

Everyday is a Gift so Fight Strong, Live Long

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Randy437's picture
Replies 9
Last reply 11/4/2014 - 10:21am

I'm now 5 years NED.

 

Randy - Stage IV

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chowmene's picture
Replies 7
Last reply 11/3/2014 - 12:04pm

hi, my name is mark and just learning about melanoma. just had mole removed and was told it was superficial spreading melanoma clark lvl ll breslow depth 0.40 mm. i understand i'm lucky it was found when it was. should i use sunscreen even if i'm just gonna be out walking to work about 10 mins. time?

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JustMeInCA's picture
Replies 6
Last reply 11/8/2014 - 6:29pm
Replies by: Carole K, JustMeInCA, Anonymous

I'm hesitant to post this question because: 1) it seems so inconsequential, and 2) I feel rather idiotic, but it's a genuine issue and I'm at wit's end. My dad is Stage IV with several large tumors on his right leg that cause him a good amount of neuropathic pain, especially at night. He, who was never a cat guy, was adopted a couple years ago by an abandoned cat which simply adores him, to the point that if Dad goes outside, the cat sits at the door and yowls.

The problem is that the cat, Sidney, likes to lay on Dad in his recliner. This isn't as much of a problem during the day, but Dad has taken to sleeping in his recliner at night because the pain is more bothersome when he's lying in bed. Of course Sidney now also wants to sleep there with him and wakes him up during the night when he moves and touches Dad's leg. 

I've slept in Dad's bed the last couple nights and locked Sidney in there with me, but he yowls and bangs on the door to wake the dead. We've tried to come up with other solutions, but Dad won't go for anything like a squirt gun or sonic deterrent -- he just says, "No, leave the poor little guy alone."

Has anyone else had to deal with an overloving pet? Any suggestions would be greatly appreciated.

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vicuk's picture
Replies 5
Last reply 11/3/2014 - 12:32pm
Replies by: vicuk, Ginger8888, Anonymous, G-Samsa

So Helen has had latest scan and the melanoma is back. She was diagnosed 2. 5 years ago and was lucky enough to get on GSK MEK trial straight away.  Initially, the mel was in her ovary, her pelvis and her lungs. The trial drugs started work straight away and got rid of everything although her ovary was removed. The mel is back in her pelvis but her lungs and everywhere else are clear. Dr. says next step is Yervoy. Advice needed please. What are success rates with Ipi and where could we turn to after? We are in U.K so understand things will be different. She's my best friend and only 32. Ideas, advice and anything else.

Kind regards,

Vic.

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KRob's picture
Replies 4
Last reply 11/2/2014 - 3:23pm

Friends, 

I am a stage IV survivor (10 yrs this Feb) who visits now and again to check in on others, get the latest news, and try to share hope.

For those who have been and those who are new to this world of melanoma, never give up hope and never accept being a statistic! People do survive! 

For you whose battle is not going well, I pray that God our Father gives you strength and courage. Please know that you're always in the prayers of others.

Today I ask your prayers for a fellow melanoma warrior, Danny age 60, who was just diagnosed last week stage IV with metastatic spread to his bones (more tests are forecoming). He is at The James in Columbus, Ohio. Please pray for Danny.

Many thanks,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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Steve2142's picture
Replies 5
Last reply 11/2/2014 - 1:06am

I am currently being BRAF-tested.  If the results are positive, my onologist will put me on taflinar + mekinist.  If I am negative, he mentioned an expanded access trial with yervoy + keytruda.  I have not been able to find out how anything on this trial or the combo of these drugs.  Any info would be very much appreciated.  Thank you!

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SMGY1978's picture
Replies 4
Last reply 10/31/2014 - 5:55pm
Replies by: Lil0909, Becky, Janner

To date, my 8yo son has only had the mole on his scalp removed by the dermatoloist.  (Initial pathology yielded "spitzoid melanoma" - Clark IV, Breslow 2.1 mm, 3/mm mitotic rate).

 

Next, we're discussing the plan of action with Oncology/Plastic Surgery/Pathology.   They're tentatively scheduling surgery for Nov 7th.  Today, the Oncologist said if the FISH (fluorescence in situ hybridization) test comes back negative, they'll only do a re-excision.  If it's positive, they'll do the wide excision AND SNB.  They have a concensus that the tissue is "borderline" melanoma.  

 

Thoughts?   Anyone have negative FISH results, but had problems down the road?

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KMick's picture
Replies 2
Last reply 10/31/2014 - 12:07am
Replies by: KMick, liberty04281

Does anyone remember "Lisa13" and/or know what happened to her?  I followed her posts when I was first diagnoses and then she disappeared.  Someone in the chat room thought that she may of passed but wasn't sure.  Just wondering.

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SMGY1978's picture
Replies 2
Last reply 11/8/2014 - 6:34pm
Replies by: Carole K, StephyD83

We're in Illinois (Chicagoland).   Our 8-yr-old had a mole on his scalp, diagnosed as Melanoma.  (Stats 2.1 Breslow, Clark IV, 3/mm mitotic index).   Normal bloodwork, so we're optimistic.  Tomorrow, they'll confirm his surgery date/details.  Tentatively, they're planning to do a wide excision & SNB on Nov 7th.   I'll keep you posted.

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/2/2014 - 8:14am
Replies by: kalisama, SStamps, casagrayson, Anonymous

2 weeks ago we found out my mom's melanoma has returned to her spinal fluid and ventricle of her brain (diagnosed via two separate spinal taps and brain MRI). She has a history of one large brain met, but had that gamma knifed and then a subsequent brain surgery a little over a year ago. Her doctor said she now has leptomeningeal disease, and we're waiting on scans (Fri: PET; Mon: spine MRI, brain MRI) to see if it's elsewhere in her body. Does anybody have anyone I could reach out to for help?? I've been searching through posts and, per other posters, have seen that Dr. Papadopoulos at MD Anderson is someone we should try (since he does intrathecal IL-2 radiation to the spinal fluid). My mom is my everything, and I have never been so scared in my life. She's battled melanoma for the last 5 years and has done interferon, il-2, ipi, gamma knife...She's both Braf and CKit negative. She has completed one round of Temodar and is set to start the second round next week...WBR has also been discussed... I just don't know what to do and I feel like her oncologist has no idea what to do either! :( Any help, resources, uplifting stories, etc. would be greatly appreciated!!! 

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