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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newmanmark's picture
Replies 8
Last reply 3/23/2017 - 9:04pm

I completed 3 treatments of nivo/ipi before I had to take a break due to hypophysisits.  We now have that under control but decided to not do the 4th combo treatment.  Last week I had nivoluamb alone.  The following day I experienced joint pain (wrists, ankles, knees, etc).  It has continued for over a week and prevented me from going to the gym.  Has anyone else experienced this type of joint pain?  If so, how did you manage it?

Thanks
Mark

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BrianP's picture
Replies 37
Last reply 3/22/2017 - 7:25pm

That's the news I got yesterday.  How amazing is that?  For those not up to date on my latest, I had my trial's 12 week scans on March 8th.  The scans showed my abdomen tumors were still responding to treatment but I had a new 5-7mm brain met.  That kicked off a whirlwind of travel, research, and just plain consternation.  Fast forward to yesterday.  I have my pre-gamma knife Brain MRI in the morning which is done at a higher resolution than your normal brain MRI.  Later in the day I'm getting my gamma knife education consult from a nurse.  At the end of the class she takes a look at my scans and says, "I probably shouldn't be telling you this but I don't think there's anything there anymore."  Sure enough there was complete resolution of the tumor.  Even though it was small at 5-7 mm it's pretty remarkable that it would resolve in 10 days.  Was the first scan not accurate?  Did the trial treatment kick in?  Were prayers answered?  I don't know and don't care at this point.  As Julie says I'm just doing my happy dance. 

Brian

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Replies by: Laydeejoey, Anonymous

I was diagnosed with melanoma in 2006, had surgery to remove a large ulcerated mole on my stomach the end of 2006 and underwent the standard one-year treatment with Interferon.  At that time and due to my melanoma having not invaded any of my organs (although the mole was ulcerated and very deep), surgery and Interferon was the only course of treatment offered at that time.

 

I am now thankfully approaching my 10-year anniversary and still remain NED.  But at the time of my cancer diagnosis, I racked my brain trying to think of what I could have done to make this mole on my stomach (which I had had since very early childhood) change and there was only one thing I could connect it to, and that was daily use of Johnson's & Johnson's baby power/talc to that whole area of my stomach where that mole was.  I had used this powder daily on my stomach for over 20 years.  I researched it on line to try and find any correlation between daily use of this talc over many years and only found there was concern with children and lung cancers.  

Within the last year, I have seen now where there is a correlation between ovarian cancer and these same powder/talc products.  Even though these powders were not directly applied to the skin, there is now proof that these powders could eventually find their way into the body and cause ovarian cancer.

My concern is could there possibly be a correlation between the use of these powders/talcs being applied directly to the skin and skin cancers?!  Have any patients here used baby powders/talcs for long periods of time on your body and found that you've had changes to the moles in those area, namely melanoma?

Any feedback would be much appreciated and very important for those people who are continuing to use baby powders on areas of their body where moles are present.

Love, hugs and best wishes to all here fighting this vicious disease!

 

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BellaG's picture
Replies 3
Last reply 3/22/2017 - 4:00am
Replies by: debwray, BellaG

Hello there, this looks like a brilliant site.  I hope I can share my burden and get some support.

My mum is 79.  She had her original melanoma on her upper arm several years ago and had it completely removed.  Another lump appeared a few inches away, a year later, and again, all removed with no spread. 

A few weeks ago she found a "breast lump" in the upper right quadrant of her left breast.  This was diagnosed as a metastatic spread and she was sent for CT scan.  

I read some research and feared the worst.  I went to the follow-up appointment with her, and she was delighted and fully relieved to hear her major organs are all clear, the consultant told her that "there are some glands in your groin, but we will scan you again in 4 months, just to keep an eye on you, there are many reasons why your glands might be swollen". 

While she was in the treatment room having an assessment with the nurses I spoke to the consultant and expressed my surprise at how the melanoma can metastasize with no lymph/blood involvement.  He then told me that "it's very serious, but I see no benefit in your mum knowing this".  He is quite right in his assessment of my mum, she will COMPLETELY LOSE IT if she gets a poor prognosis.  She watched both parents die from cancer and is petrified of it to the point it's really ruled her life for the last 40 years.  

Her lump has now been removed and she's quite happy, but I spoke to her yesterday, and she's found a hard lump under the skin near her anus.  I reassured her, but I wonder if this is further spread now.  

I can imagine she won't be a candidate for treatments, she's BRAF negative, and even if any were available; she has other health problems and is a heavy smoker.

So, what am I asking for?  I don't really know.  Is this a typical mode of spread?   She lives several hours away, and I feel I need to be making plans for "when the time comes", but what are the timescales likely to be?  Please don't worry about cushioning the truth for me - I'm very much supported emotionally, I just feel frustrated by distance and lack of access to her consultant. 

Thank you so much for any help, Bella

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Anonymous's picture
Replies 2
Last reply 3/21/2017 - 10:54pm
Replies by: Munchsolis, AshleyS

Hi All,

I am currently 16 weeks pregnant, and was diagnosed with a T1a tumor (.8mm, no ulceration, no mitosis).  I have gotten two different opinions from two oncologists regarding an SLNB - one, says that we should do it but wait till after I give birth (7 months from now).  The other, says it is fine to do during pregnancy and he wouldn't delay.

Given the seriousness of this disease, and the fact that I don't want to wake up in 7 months with stage 4 and unable to care for my baby, I am leaning towards doing it now.  BUT, I have read a great deal online that suggests there are risks to the baby (especially since my melanoma was on my leg, so the lymph nodes will be in the groin area).

Does anyone have any thoughts to share on this?  Woudl you do the SLNB now, and assume the risk to the baby, or would you wait since the liklihood of it having spread is so low given the original tumor stats?

I'm so torn and lost, so appreciate any insights/advice/experience you may have!


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mrsaxde's picture
Replies 0

Well, I had my most recent scan, a PET this time, last Friday. Saw my oncologist today. I knew the minute she walked into the room that the news wasn't good.

It seems Keytruda has managed to kill the spots on my skin and in my right lung. Neither of those places turned up as hypermetabolic on the PET. But what did light up is the mass noticed on my December CT scan, on the hilum of my right lung. Also several lymph nodes in the area are hypermetabolic. So it looks like Keytruda did the job, but at some point I have apparently stopped responding, and that mass that my oncologist wasn't terribly concerned about is now the issue.

She is taking my case to the tumor board on Thursday, and the plan currently is to continue with at least my next infusion of Keytruda, which is scheduled for Friday. My oncologist mentioned the possibility of radiation. Depending on what she tells me on Friday another visit to Dr. Sharfman may be in order.

Down but not out. Fortunately, unlike just a few years ago, there are still options remaining. And I am nowhere near ready to give up!

-Bill

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Replies by: Lddaughter, J.bun, zfishberg, SSH

Just trying to get an idea if I should call tomorrow or give it another day. This past Thursday we went in and they want to put my mom an Taf/Mek combo for braf + to help the tumors. We did blood work and were almost approved for a clinical trial (for dosing) and was supposed to get meds that Friday. The blood work showed high bilirubin so we had to opt out but still put in the treatment plan to insurance to get meds that morning. We got a call today from the Dr. saying the meds will have to be mail ordered from CVS Caremark and they should be reaching out to us in the next 24-48 hours. Once again it feels like her spirits are shot (also found a blood clot in the lung Thursday so we started injections to make sure that doesn't get worse). She has great BCBS PPO insurance, we just wanted to know if anyone else had to deal with the mail order and how long it roughly took. We are hoping if they call tomorrow to get expedited shipping, otherwise I am calling and HOPEFULLY  get some answers. 

Thanks for your time,

-A

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Judy Wiegand's picture
Replies 5
Last reply 3/21/2017 - 7:17pm

Diagnosed with stage 3a in December 2016 and continue to have other moles biopsied and now have 2 additional sites (MOHS surgery). PETscan in November 2016 was clean.

Am I pursuing the correct treatment of watching and seeing dermatologist and oncologist  every 3 months or is there something more proactive I need to do?

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Anonymous's picture
Anonymous
Replies 0

Hi

Hope somebody can help with advice. About a month ago I noticed a light black streak on my thumb.

I saw a dermatologist who used a dermascope to examine the nail. The consultant wasn't too worried and was happy to wait and see if it got worse, but also offered a biopsy.

Being worried I went for the biopsy. The entire thumbnail was removed, when the surgeon pulled back the skin behind the cuticle no lesion was present, he was confident it was completely fine but I insisted on the biopsy so a random sample was taken, which came back normal.

I recently saw the dermatologist again as a couple more lines have appeared one on the other thumb and one on the index finger of the same hand as the original  thumb streak.

While there he also looked (dermascope)
at the healing thumb. The nail has partly regrown one month on.

He said he could see pigment again, but seeing as I had now developed other streaks he would be inclined to think it was more likely be racial longitudinal melanonchia (I am dark skinned).

My research had led me to believe that you could get longitudinal melanonchia either due to melanocytic activation or melanoncytic hyperplasia. The latter (hyperplasia) causing a mole or lesion.

I didn't think there HAD TO BE a mole or lesion, to cause the black line (melanonchia) and it was just pigmentation in the nail.

However when I reminded the dermatologist that no lesion was visible when the surgeon removed the nail he (the dermatologist) implied there had to be a mole or lesion to cause the line.

So he said either we had to be happy with the result of the biopsy or assume the surgeon missed the right area as nothing was found and repeat it again on the same thumb. Again he was happy to wait and see and wasn't worried.

Questions:

Is longitudinal melanonchia always caused by a mole or lesion regardless of whether it is benign or malignant?

Can anybody suggest the name of a consultant who specialises in longitudinal melanonchia / subungual melanoma.

Also would I be right in thinking that if there was a lesion it would start just below the skin behind the nail cuticle and work down rather than the other way round i.e. start deep in the finger/thumb and work its way up to the surface

Also are there any nutritional reasons for it.

Any help would be appreciated.

Yours
Very stressed.
 

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zfishberg's picture
Replies 4
Last reply 3/21/2017 - 6:17pm

Hello!

wanted to check whether there are any patients that were treated with PD-1 inhibitor (Keytruda) in parallel with BRAF inhibitors ( Taft/Mek or Taff alone).

For example - Keytruda once in 3 weeks,

taffinlar - during 2 weeks between the infusions

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TexMelanomex's picture
Replies 23
Last reply 3/21/2017 - 4:29pm

Hey Everyone, I've been reading in here for weeks and finally decided to stop lurking and participate. I was diagnosed in late January with melanoma on my scalp. I'm 43 and have been healthy (military) my whole life so when the dermatology office called with the news I was floored. Thus far I have not had any treatment because I spent some time researching and decided to go to MD Anderson rather than have a local oncologist tackle this. I have been to MD Anderson once to meet with my oncologist and have had CTs of the chest, abdomen, and pelvis (all clear) and will have the wide exicision and SNB next week. While it was a temporary relief to get the CT results, waiting on procedures and answers is rough. I get the impression through these message boards that I better get used to waiting and watching and waiting some more.

My initial biopsy indicated that the tumor was 2.2mm deep, Clarks level 4, has a mitotic rate of 12, no satellitosis, no perineural invasion, and "non-brisk" tumor invading lymphoocytes. I have read what all of that means statistically and I have decided I don't care about the statistics. I feel like this is my fight and while numbers are important, my approach to this is more important.

I really appreciate all of the stories and insights I have read on here. I feel very confident in my treatment team at MD Anderson and I feel I am ready for whatever fight I have ahead of me (but this might be easier to say up front). This diagnosis, in its short time, has already taught me a lot, but most improtantly: Nothing is certain. Be nicer. Love your family and friends like there will be no tomorrow. Slow down. Breathe. My faith matters more than I realized. People can and will inspire you if you let them. Breathe some more. Being concerned is normal, feeling sorry for myself is a waste of my time. Sunrises have a new flavor and serve as a reminder that sunscreen is my new best friend.

Tex

 

Tex

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Janner's picture
Replies 10
Last reply 3/21/2017 - 11:58am
Replies by: Janner, barb3246, Anonymous, Bubbles, Mat

For someone at high risk for bone mets (not melanoma, actually, but BC) - what scan type is considered the best for detecting bone mets?  If you are reluctant to get scans, which type would you choose if you did any at all?

http://www.MelanomaResources.info

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WallyE's picture
Replies 14
Last reply 3/21/2017 - 10:06am

Good afternoon all the worriers on this forum.

My history is well recorded, I think.

Since my last posting my oncologist has recommended I go onto IPI / Yervoy taken as a combo with something else.

Please can you share your experience with me about this drug in terms of side effects, how it is administered and whether it is effective..

We are still waiting for the Medical Aid to authorise it. Apparantly it costs about just over ZAR R800 000  fo a 4 cycle course taken once every 21 days.

Any input will be greatly appreciated.

God bless you all.

Wally

One day at a time.

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/21/2017 - 8:26am

I am wondering if it is common for someone to go from stage 3 to then finding brain mets but no mets anywhere else? Anyone on here experience only brain mets?

 

Jenn -  IIIC - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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geriakt's picture
Replies 8
Last reply 3/21/2017 - 1:21am
Replies by: casagrayson, geriakt, jenny22, Anonymous, dmalone, Becky

Not only do we need to discuss our own melanoma treatments, but we also need to talk about preventing this cancer. We have all heard of how bad it is to use indoor UV bulb tanning beds, but I never hear anyone talk about the dangers of UV cured nail coatings and polish. Did you know you can get a melanoma under your nail bed? Did you know melanoma under the nail bed goes mostly undetected and is more fatal? Think of it you have an intense UV light on your hands, nails and nail bed every 2 weeks when you get your nails done ( or did as some may say). 

Think about this you do not get to see what is going on under your nail bed because your nails are painted all the time. Does your nail person do anything to protect your skin on your hand around the nail or just stick your whole hand under the UV light source to cure the nail coating? 

I am a 51 YO male stage 3B melanoma patient  and never had my nails done but I am a coatings chemist and would never place my hand under intense UV light. I also have a friend at 41 YO male with melanoma found under his thumb nail. I assume he never had his nail done either. His melanoma went miss diagnosed for 6 months. Then he had his thumb removed, then had his lymph nodes removed. He started as a stage 3B like me, but unfortunately his melanoma progressed to stage 4.  

My point in all of this is ladies do not have your nail treatments using UV cure coatings. Use old school lacquer. I understand your nails may not be as durable or as pretty as your designs and color blending will be limited. One the plus side you will always have all your digits. 

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