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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Shelby - MRF's picture
Replies 6
Last reply 8/9/2012 - 5:58am
Replies by: Anonymous, Lori C, Ranisa

Avvo will donate $5 to the MRF for every doctor review they receive in the month of May.  Pleae use this link to be directed to Avvo's webpage designed specifically for skin cancer awareness and the MRF:  http://www.avvo.com/support/skincancer 

Pass this along to your friends!  Thanks!Ple

Shelby - MRF

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kay5291's picture
Replies 8
Last reply 8/8/2012 - 11:30pm
Replies by: Roxy1453, kay5291, AngelaM, LynnLuc, mcanova, aldakota22, Anonymous

Hello All-

I have been lurking for a week and I have gone back and forth about posting because I don't have any test results yet.  But you all seem so kind and calming, and I guess I could use some of that right now.

So a year ago I had a baby.  Late in my pregnancy I noticed a small spot on my upper leg/buttock area.  It looked like a small hemangioma, which run in my family, and my skin always changes when I am pregnant from the hormones.  Most of the changes go away or resolve after I stop breastfeeding, bu this one didn't.  It grew to the size of a small pencil eraser, and got dark.  I figured it was a blood blister.  I really didn't think anything of it.  But it never went away.  A couple of weeks ago I brought it up to my husband and he agreed that it would probably be best to get it looked at.  I made the appt with my pcp.  I have a very good relationship with my doctor, but as soon as she got a look at this thing her whole demeanor changed.  And I guess that's when I got scared.  She set up an appt for me with a surgeon, saying that she wanted to make sure that an expert cut it off because of margins, etc.  I had a consult with the surgeon first, and he said, "I don't like it.  That needs to come off ASAP."  I told him we were going on vacation next week and he said he didn't even want to wait until after that.  He set up the excision for the following weekday.  While he was cutting it off, he said two things that have me very uneasy.  First he said to his nurse, I've going to revise this some before I stitch up."  To me he said, well I've got to take off a bit more than I told you.  Then several minutes later he said, "Ok I'm going to stop.  I can't chase this anymore."  When I asked what that meant I was not answered, and the subject was changed.  I was given short or no answers at all for every question I asked, in fact.

Today is Wednesday, and the nurse said she would probably have results Friday or  Monday.  It's like torture.  I don't want the call but I want the call now.  It's difficult because no one will talk to me about it.  My husband says don't borrow trouble, which I understand but just makes me feel lonely.  Doctors wont answer any questions until they have to.  My mother dissolves into tears at the mere mention of the subject.  Ugh.

So I guess I just wanted to know if anyone has any idea what the surgeon could have meant with those two statements.  Cause I knwo what it SOUNDS like to me. Also I guess I needed an outlet to get some feelings out.  I think it kind of sucks that the one going through it is forced to be the "strong" one for everyone else and hold it all together, but that seems to be my situation.

If you're still reading, thank you.  As fatalistic as this probably sounds, I am hoping and praying for good news.

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Jydnew's picture
Replies 7
Last reply 8/8/2012 - 7:42pm
Replies by: Gene_S, Jydnew, DebbieH, akls, Anonymous

Hi all,

My husband has been NED for 10.5 years - IIIA at diagnosis in Jan 2002.  This is the first year he won't be getting a scan.  He will get the usual bloodwork and oncology appointment.  What is that worth?  Everything I've said seems to say that bloodwork is only indicative of a recurrance when the cancer is very far gone, and that the patient is the most reliable person to catch a recurrence through symptoms.  He's going to get bloodwork twice a year and a chest x-ray once a year (in winter) from this point forward.

I read that conditional survival puts his chances of continuing NED at the same rate as someone who was diagnosed at stage I.

Wishing many years of NED to everyone here...

Wendy

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awillett1991's picture
Replies 4
Last reply 8/8/2012 - 5:35pm

I'm a little over 3 mos on Zel, it's working, and finally I am feeling like I'm past the worst of the side effects. I was diag in Jan with a cardiac tumor, and June scans show it is shrinking. Hopefully nothing else will crop up - next scans in 3 wks.

Today I asked my doc about stopping Zel and switching to Yervoy. My thinking is that my tumor burden is low, and maybe Yervoy will work better now rather than later. I would have Zel in my back pocket if needed, assuming it doesnt fail me before then. I am not a good trial or IL2 candidate bc of my cardiac involvement, so my future options are pretty limited. My Mel has been a slow growing kind so far.

I'd appreciate any ideas or thoughts you might have - my doc is mulling it over. Just trying to make the most of my options. Where is a crystal ball when you really need one?

Thanks!

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Theresa123's picture
Replies 1
Last reply 8/8/2012 - 4:32pm
Replies by: louwpb

Hi,  I found out I have this gene in my melanoma tumors.  I am trying to find out information.  Is this gene inherited?  I have a daughter and I hope I didn't give it to her.  I am being evaluated for Zelboraf.

thanks,

Terri

Stage 4

Every day is a miracle.

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Mymlan's picture
Replies 8
Last reply 8/8/2012 - 10:36am
Replies by: Mymlan, Anonymous, Janner, Gene_S

Hi all, 

I had a wide re-excision for a thin melanoma of the Left posterior ear 3 weeks ago. It was grafted and is healing well. The melanoma was removed by a Dermatologist on June 6th. Pathology report states Clarks Level II, Breslow .25 mm, no ulceration, extensive regression, mitotic figures not applicable (small dermal component), epitheliod cytology, no identified melonacytic nevus, non-brisk tumor-infiltrating lymphocytes, no perineural/vascular invasion identified. 

Also, found a strange-looking mole in my scalp on the Right side of my head, did a 2 MM Punch Biopsy, which came back Friday as precancerous, according to the Oncologist. Now I am being sent to the MD Anderson Melanoma Center where they want to do a full body scan to check all of my moles. 

About 2 weeks ago, I noticed several small, new pigmented areas on the backside of my left ear, they are all in a row up and down my ear. Two are pretty big and kindof a rectangular shape. They are getting darker as time goes by. They don't feel "bumpy" but they do have a slight rough surface. What are the chances of this being more Melanoma..?

I noticed a few more similar spots under my left armpit last night. One big and two small, they are very faint but they are there. Has anyone else had a similar experience..?

Thanks.

"The journey of a thousand miles must begin with a single step" - Lao Tzu

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Kelly7's picture
Replies 5
Last reply 8/7/2012 - 11:11am

My brother(37) has stage 4 melanoma on his lungs. In February he underwent IL2 with little positive results so the doctor had him undergo Yervoy starting in April. His only side effect during the treatment was that he lost some hair and his hair turned gray. He finished his treatment in June and went back in July for his 6 week scan. At that time, the big tumor shrunk, and the smaller tumor was GONE!!!!! 

Fast forward to 2 weeks ago, he started to get really bad headaches, and was super tired. Went in for more scans and tests and it was determined that his pituitary gland was swollen causing the severe headaches. He was sent to the hospital for 2 days and is now on steroids.  Now this week he has developed severe stomachaches. He went to the ER last night, and they did many tests. THey think its gastrointestinal. 

Has anyone else had this? I keep reading the side effects on the Yervoy website and they say that the side effects can be life-threatening.....I am soooo worried!

 

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Anonymous's picture
Replies 2
Last reply 8/7/2012 - 5:34am
Replies by: aldakota22, sharmon

For those familiar with Peter Ogle's blog http://www.theogler.blogspot.com/2012/08/family-update.html ) this is the most recent entry regarding Peter. For those so inclined, the family is asking for prayers for Peter...
 
Sunday, August 5, 2012

Family Update
Guest writer: Nick Ogle

Despite an encouraging PET/CT report from Tuesday's trip to OHSU, a CT scan taken at Good Sam on Saturday showed a large tumor on the right side of Peter's brain located in his parietal and temporal lobes. Because of its size and the swelling caused by it, Peter is undergoing surgery to remove it today in Providence Portland Medical Center. Because melanoma brain tumors bleed, there is a lot of blood clotting in the area surrounding the tumor, which will also be removed.

We are thankful that the tumor is on the right side of the brain, Peter's nondominant side. This means his speech and memory should remain unaffected by the surgery.

We expect Peter to be in the ICU for the next couple days as he recuperates and is monitored closely.

Hold him in your prayers. 

Luke 1:37

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Gene_S's picture
Replies 2
Last reply 8/6/2012 - 11:51pm
Replies by: Gene_S, LynnLuc

Quercetin, a polyphenol found in apples, onions, green tea and other plant-based foods, is a quinone that has shown an interesting effect on melanoma tumors.

In low concentrations quercetin behaves as an antioxidant, yet at high concentrations it becomes a cell-damaging pro-oxidant.

 

 

More info can be done by searching " Quercetin and Melanoma".

also "Science codex and Treating melanoma and brain cancer without chemotherapy".

also see: 

http://www.james-arond-thomas.com/template.asp?articleid=125

Best wishes,

Gene

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

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Gene_S's picture
Replies 3
Last reply 8/6/2012 - 10:07pm
Replies by: Anonymous, ToddC, chalknpens

Here is an excellent video about cancer in general, it is a must see video!

http://www.youtube.com/watch?v=WnaBG177VIw&feature=related

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

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himynameiskevin's picture
Replies 13
Last reply 8/6/2012 - 7:56pm

Hi all,

Sorry for the delay, and the length, but here's the latest..

I had an MRI on the 23rd that showed new/growing tumors in the head, none over a 1 cm. A day or two later I noticed a lymph node in the groin was swelling, this same one appeared around the same time of brain tumors in Jan/Feb. It completely went away after starting Zelboraf, not even showing on a PET scan. It's weird to me that the same one, same spot, came back now, same time as my brain is under assault again... maybe there's a correlation?

I had a "detailed MRI" yesterday, for a clearer picture, and preparation for more SRS or WBR. But no call from the doc. She and I have always had an agreement that'd she calls me the day of the scan to update, whether good news or bad, she always has. But not this time, I'm really hoping it's just because theres not really any change from this scan and the last.

I finally, got my PET scan scheduled for Monday morning, it's a little upsetting it was ordered over a month ago and should've been done weeks ago. But people make mistakes, and the milks been spilt I guess.. moving on.

As I have progressed I have been on and off of Zelboraf since the 23rd. Due do different Dr's opinions. But as of the 2nd, I'm off completely, for now. For two reasons, "Zelboraf and radiation do not mix well together. There has been some bad interactions seen at sites irradiated in patients taking the medication. Ideally a patient should stop at least 5 days prior to radiation. And... patients who take a break from the drug sometimes regain response to the medication. This has been seen and is now published."

So here's the plan.

It's unlikely, but should all the stars align in my favor, my PET would show complete clarity of the body, except for the node, indicating there's some connection between the two, maybe the node is "seeding" my brain. They surgically remove or SRS the node, and tell me my head is SRSable again, and they do that, rather than WBR. They're all taken care of, never to return and I live a long life, learning so much from this experience, and helping others along the way until this beast is tamed. Which seems is just around the corner, if we could just hold on a little longer...

The more "realistic" plan and near to last option that's been discussed and I'm hoping for: 1. Keep off zelboraf. 2. If scans aren't too bad, get SRS, as WBR might change things. 3. After radiation, wait a week, then start zelboraf for a week. 4. Begin IL2 the next day. I would like this option, IL2 was the first thing I did and although it didn't cure me, I tolerated it well (14 bags and 9 bags) and although the dozens in my lungs and nodule on my chest progressed.. the good sized tumor in my liver just vanished without a trace the cluster of mass on my back softened for awhile. I guess I'm just excited about this, because it's another option.

If scans look bad. Or I make it through the IL2 with no benefit. Traditional Chemo is an option and something I have never tried. Most likely Temodar. Maybe Temodar and Zelboraf together..

And maybe, if I could buy a little time, maybe I could get on one of those "Compassionate Use Trials". If one shows up. One of those MEK inhibitors or AntiPD1 things I keep hearing about. I'm hoping something's gotta eventually work right?
 

Thanks for hearing me out. Any insight or opinions? Encouraging relatable stories?

Sorry If I've missed out on keeping up with some of you, there's so many people on here, and if you miss a day or two, the board just flies by.

-Kevin

 

I've been watching the Olympics lately, jealous and envying the health, energy, and strength of all these athletes. But got to thinking, in a way, we're just as strong and talented as any of these athletes, if not more.. And were a team too. Helping each other fight, not for a gold, but for life. A relentless mental, physical and emotional struggle on a whole nother level. We're basically Olympians.

I hope to post decent scan results this week and have a "set plan". Talk to you soon.

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deardad's picture
Replies 14
Last reply 8/6/2012 - 7:26pm

Sorry no news is good news at the moment.

I am loosing my dear dad, he can nearly no longer walk and his right arm is now going numb.

The damm flu has robbed him of sleep for 4 nights and taking away his final quality of life.

I feel ripped off and desperately sad.

I hate melanoma.

Nahmi from Melbourne

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LynnLuc's picture
Replies 2
Last reply 8/6/2012 - 6:55pm
Replies by: Webbie73

http://www.bethesdaskincare.com/

The Melanie Policy - free bar of Bethesda Sunscreen Soap to Cancer Patients - from Bethesda Skincare

They also have a FB page

https://www.facebook.com/BethesdaSkincare

I wrote the guy and requested it ( a friend sent me her response letter) and he responded to mine as well and asked me to spread the word. Another girl on FB got hers and she says she loves it.

The fella said because I am fair skinned I should remember to still wear sunscreen...so he seems like a wise fella!!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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deardad's picture
Replies 5
Last reply 8/6/2012 - 6:14pm

Does anyone think that 8mg of Dexametheisone is too low for someone with brain mets with paralysis?

Do you think we can increase this dose? Does anyone know what are the negatives of doing so are?

The onc said it might help, but didn't recommend it? I don't get that....and in the heat of the conversation we came out not knowing whether it was an option or not...he just didn't recommend it.

We realise dad has only a short time but is there anything that can help or has helped your loved one with brain mets before they passed?

Dad's appetite was great a week ago now its a battle for him to eat.....I think that's more about loosing his sense of taste.

We are caring for him at home, he is still lucid and his old self personality wise but as I posted earlier on he is now in a wheelchair, experiencing mild blurred vision and dizziness. He slips in and out of nodding off, but when stimulated can concentrate and engage in conversation for over an hour.

What a horrid, vicious cancer......

Nahmi from Melbourne

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chalknpens's picture
Replies 4
Last reply 8/6/2012 - 8:57am
Replies by: chalknpens, Janner, hbecker, Anonymous

I had the bone scan done last week, and met with the orthopedist this week to hear the results. While he found evidence of an old fracture (which might correlate with the beginning of the pain a few years ago in my lower right rib) he saw no indication that the melanoma had spread to my bones. That was very good news, and reassuring.

He is still, though, suggesting that I enlist an oncologist to manage my melanoma treatments from this point on. My dilemma is whether to go in to Boston to Dana Farber, or to go to my local hospital and find an oncologist there.

I feel a bit foolish going in to Boston, with what might be no reason to look for an oncologist. The dermatologist told me a few weeks ago that this was 'just superficial' stage 1 melanoma. But the orthopedist is looking at a larger picture, and further ahead, and suggesting that an oncologist would be the right doctor to help me make decisions when or if more melanoma is discovered.

This is deja-vu, reminding me of receiving the diagnosis of relapsing remitting multiple sclerosis five years ago. I agreed to the daily self-injection for treatment, even though I had not had recurring symptoms but always different symptoms. I was advised that the injections were designed to 'slow the progression' of MS, not treat any symptoms that came along. The belief was that by reducing the number of relapses, it would slow the progression.

New research is out now that denies that - even though the injections reduce the number of relapses, it does not slow the progression overall. I had been very depressed by the whole MS treatment ambiguity, and had stopped the injections on my own last year, but too late to save my careeer, as I'd been encouraged to choose 'quality of life' and retire earlier than I'd planned. I did retire, but on a smaller pension than I'd planned. Once I retired, i stopped the  injections and immediately felt better for a few months ... until this May when i was diagnosed with melanoma and other skin cancers, and the surgeries began. 'Quality of life' is different than i'd expected ... we spend most of our time and too much of our money driving to skin surgeries week after week.

I've already begun questioning the wisdom of allowing the surgeries, which leave large lines of sutures, to begin, if it is 'only superficial and stage 1.'

There are no do-overs in life, much as i wish there were.

But the bone scan showed no bone cancer.

I am not perfect, but I am enough.

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