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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Mat's picture
Replies 11
Last reply 1/30/2017 - 12:27pm

I'll call this post--taking a break from nivo, aka "high class" problems--particularly in light of the struggles of a number of folks in our Stage IV community.  As some of you know, I've had a good run on ipi-nivo since January 2016.  I've been fortunate with side effects, though I did spend most of the last 7 months on antibiotics due to a sinus infection that would resolve and return (thought to be a side effect due to sinus inflammation caused by ipi-nivo).  Starting in November, I started to experience unexplained pain in my right ankle, which progressed to pain and swelling and water retention from ankle to knee (again, just the right leg).  Have been on 20 mg of prednisone for a while now, which helps a bit (along with Advil).  Most recent PET this week continues to be stable (no concerning uptake) similar to my PETs in June and December.  My most recent nivo infusion was in early December.  I've had approximately 20 nivo infusions in total.  We decided to take a break and revisit every 2 weeks in light of the December PET.  Now that I've had the most recent PET and continue to have the inflammation (referred to as synovitis on the PET report), the thought is to continue to hold the nivo.  Makes me nervous.  I don't want the tail (synovitis) to wag the dog (melanoma).  Celeste had a recent blog post on a similar topic, but the study involved NED patients (I'm not NED) and only a small group (and only a short period).  Again, high class problems and ones that I gladly accept versus tougher circumstances.  Of course, I continue the ongoing discussions with my medical team.  Any thoughts on taking a break and/or experience with immunotherapy-induced synovitis are welcome.

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AvaL's picture
Replies 13
Last reply 1/31/2017 - 3:13pm

Just very curious to be honest.,, I've read some reliable material about the use of mebendazole and the potential for it to aid cell death in melanoma. 

 

Had anyone tried this? Or heard of its use? 

 

would really appreciate anyone's input... is it all nonsense or could it have some value? 

 

Many thanks x

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/28/2017 - 11:08pm
Replies by: Anonymous, Charlie S

In general how likely is it that you can work during chemo or radiation

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skousal's picture
Replies 1
Last reply 1/29/2017 - 3:58pm
Replies by: Jules

Hi everyone, 

I am currently stage 3a, still awaiting a left complete groin lymph dissection scheduled for next week at MDA. Since my initial surgery 12/13/16 for the WLE and SNB I have had intermittent burning in both left and right groin areas. The surgical oncologist (not at MDA)  didn’t address my concerns at all, I have also been having low grade fevers. With time the pain and swelling is getting worse. The last few nights I haven't been able to sleep due to the pain. I can feel two swollen nodes maybe the size of a walnut, in each groin. The odd thing is that the swelling is not isolated to the left groin, the side of the positive SN, but rather on both sides. Has anyone else had these symptoms or could offer remedies to reduce the pain, or reduce my anxiety. A hot bath appears to help some. 

Thank you, Shawna 

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TommyD's picture
Replies 3
Last reply 1/29/2017 - 5:20pm

Greetings all

Im new to the forum as a newly diagnosed stage 4 melanoma patient. My oncologist has recommended the immunology therapy using the drug Keytruda (Pembrolizumab).  Wondering if anyone has any experience with this treatment and it's side effects. 

Thanks

TommyD

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BrianP's picture
Replies 21
Last reply 1/30/2017 - 3:30pm

As some of you know I started the same trial Josh did about 2 months after he started.  Just returned from my first scan at 6 weeks and basically my disease is stable since starting the trial.  All you "old timers" know this is great news.  I've said in the past that stable is a tie and a tie is a win in this game.  Having said that you all know everytime you go in that machine as much as you try to dampen expectations you all hope to get that miraculous result coming out.  The nurses and doctors were pleased with the result and say the real story will be told in six weeks at my 12 week scan.  All that remains treatment wise in the trial is the 4th ipi infusion and then 2 or 3 follow up scans. 

I think the trial is a pretty fascinating trial.  Here's a brief explanation.  The first phase of trial is the leukapheresis which is the process in which they hook up an input and output to you and run your blood through a machine that collects your white blood cells.  Next they filter your white blood cells in an attempt to gather your memory white cells (I think they are called the B cells).  Once they have these memory cells they manipulate them inorder to make them more likely to find melanoma cells.  Once they do this manipulation they harvest these new and improved cells into about 25 - 30 billion cells.  This process takes about 8-10 weeks and when it's done you start phase II.  Phase II they reinfuse these new cells and start a 14 day period of low does IL-2 to help the infused cells in their new environment.  The low does IL-2 is just 2 self injections a day and nothing like high does IL-2.  24 hours after the white cells infusion you have your first of 4 ipi infusions.  The side effects generally are the same as Ipi alone. 

As Josh's, probably mine, and the past trial show this isn't the cure as of right now but to me there seems like so much potential.  If you can find a way to manipulate a persons white cells to fight cancer that would be a pretty powerful tool.  Below is a link to the last trial they tried this.  As far as I can tell it is essentially the same trial Josh and I are on but I think there are some advancements in the machines and techniques of filtering and manipulating the white cells.  The first thing that jumps out at me is whether the results are that much different from ipi monotherapy.  I think the researchers are trying to make a case but I'm not sure.

http://ascopubs.org/doi/full/10.1200/JCO.2015.65.5142

All and all I definitely have no regrets about trying this trial and I'm pleased with the result but even as I continue to hope for that "miraculous" scan report in 6 weeks I also know realistically this isn't my last treatment.  Thanks everyone for your support on this site, even you Celeste ;).

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BBrakhane's picture
Replies 17
Last reply 2/13/2017 - 2:42pm

Hello, I just discovered this  site yesterday.  Its very humbling reading a lot of these stories.  I know that as scary as it has been I have been so very fortunate, and truly consider myself blessed in how this has gone so far.  I apologize in advance for how detailed Im going to be, but as I have been reading, I found myself wanting more details from other peoples stories, I guess to find out if there were similarities, in timing, discoveries, treatments, etc, etc,....

 I originally noticed a very tiny red dot in the middle of a mole in January of 2014.  My father had had several small melanoma spots removed around 20 years ago, so I knew I was at risk.  I am a neurosurgical consultant, so I know almost all of the surgeons where I live.  I called the one Im closest with and told him I had melanoma.  He said, "Hold on, can we at least do a biopsy first?"  So we did the biopsy a few days later and it did come back as melanoma, surgery was scheduled for the next week.  In the time between the biopsy and the surgery, while in the shower, a felt a knot in my right groin, I knew that was not a good thing!  I called him and let him know immediately.  He decided we better do a PET before the surgery, so we had a better idea at what exactly we might be dealing with.  The PET revealed two spots, the mole on my right calf and a spot in my right groin, while not good news, it was better than finding out there were spots everywhere, and at least we knew what we were facing.  He decided to take all the right groin lymph nodes in the surgery as well.  The calf resection margins were clear, and only the one lymph node had evidence of disease, all the rest were clear.  I was referred to Dr Linette at the Siteman Cancer Clinic in St Louis for follow up.  He explained everything, and told me that they had tested my tumor and I was BRAF positive, I had NO idea what BRAF was, so I thought that was bad news, typically positive in a medical test, is bad news, isnt it?  That was what I thought anyway.  He explained the different drugs at the time and said that he really didnt think I needed to be on them, but if I wanted to, for peace of mind, that was fine and he would support that decision.  I decided to hold off and just stick with seeing a dermatologist and surgeon for follow up. 

Jump forward 18 months or so, and while in the hospital for an exam, an abdominal CT was done, and the bottom of my lung bases were incidentally observed, a small spot (7 mm) was noticed.  This was extraneous to the reason for the exam, but with my history they decided to do another CT the next day on my chest to see if there was anything else of note.  There wasnt, so the doctors said, its so small and only one, lets give it three months and see if there are any changes.  Three months later, this was October of 2016, we did one more CT and that spot was still there, measuring 7.8 mm, but again, nothing else.  Most of the Interventional Radiologists I work with said its too small to biopsy yet, lets give it a little more time, one of them said, no, I can get it, I think we should check it.  So we did, it was a tough case, but he was able to get enough cells to get the info that it was indeed, melanoma.  Back to Siteman!  Dr Linette had moved on to another opportunity, and I met my new doctor, Dr Keller.  I really liked him, which was great because I had really liked Dr Linette, and hated to hear he had departed.  We agreed that a resection was the way to go, so that case was set up, in the mean time I had another PET done, and no other spots were detected.  However, Dr Keller asked if I had ever had a brain MRI, I told him no, only the head part of the PET, he said he would feel better if we did the MRI, just in case.  So we did, and of course, another tiny spot (2mm) was found in the cerebellum.  Lung surgery was cancelled and an appt with a neurosurgeon was scheduled.  He offered radiation, I only knew of fractionated, 30 day or so multiple treatment type of radiation, and I was taken aback at the thought of that, for a 2 mm lesion, when I knew from both of the Oncologists that there were drug options, and pretty good ones at that.  Once he explained no, it was Gamma Knife, I said heck, lets do that today!  We actually were able to do that the following week, that was done on Dec 15 2016.  Everything went very smoothly there, and we were able to reschedule my lung resection for Dec 22.  That surgery was kind of painful, but in the grand scheme of things, Ill take it without complaint!  Tumor was about 8mm, but the total wedge removed was 11cm X 7.5cm X 3cm.  Margins were clear.  Dr Keller and I agreed, that even though there was no other known disease, it was probably a good idea to go ahead and start on some medication.  He recommended Tafinlar and Mekinist.  The surgeon asked that I not start them until after my follow up, just to be on the safe side for healing of the surgical sites.  So, I have now been on the meds for one week.  So far, so good, no issues, I am knocking on wood as I type this!  Dr Keller has been very clear, that there is no other KNOWN disease at this time, and I am taking these, to ideally take care of anything floating out there, that we dont know about yet.

I spend a lot of time thinking about all of this, a lot of people have said that I am unlucky, but I truly believe I am VERY lucky in the manner in which these things have been discovered, and that even though none of this is what anyone would want to go through, how blessed I am at the options that I have, as far as treatment and great doctors!

Thanks for your stories, this was the first page I happened on to, where I was able to see what other people have encountered.  It was educational, and I really appreciate the page and those of you here!

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Bmine102793's picture
Replies 8
Last reply 1/29/2017 - 12:21pm

With malignant melanoma do you get large growths under skin where melanoma mole is ? And if lymphnode closest by has also swelled does that mean its most likely spread? Havdnt seen doc yet im just curious

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MaPerny's picture
Replies 7
Last reply 1/30/2017 - 7:46am

Hi, 

I have been trying to post this for a while, we have a tough situation to swallow and for nearly 4 years we have focussed on Hope and the next solution that is round the corner.  I recommend that approach for everyone on this board and for the newly diagnosed there are lots of new, exciting options that will bring up the survival and complete cure %'s I am completely convinced.

We saw Dr Glitza as recommended to discuss the possible LMD treatment for Juan.  She was excellent, explained everything and the expected prognosis without treatment.  After going through multiple hospital stays, surgeries, radiation, immunotherapy, chemo, TIL...  Juan has decided that he wants to spend as much quality time with me and our 11-year-old son as he can while he is feeling well.  This means that he will have no more treatment except palliative pain management.  They have put him on steroids finally and the difference in pain and energy levels has been wonderful.  He is feeling better than he has been for a year!

He wants to go to the mountains so on Feb 7th we will be off to Steamboat, we haven't been able to go for three years and we love going there.  Juan won't ski of course but will be enjoying the beautiful mountains and fresh air, a million miles away from the hospital.  Eduardo can't wait to ski again.

Juan is so strong and has a wonderful attitude about it all, he wants to be in control and to enjoy his time with dignity.  That helps me hold it together for the sake of both of them although my heart is breaking.  

Sending love, hope, prayers and thanks to everyone.  

Maria

 

 

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Tink88's picture
Replies 4
Last reply 1/28/2017 - 6:07pm
Replies by: Tink88, 45_dps, jennunicorn

I went to the Dr on Monday for a skin exam, and one of my moles are melanoma 2mm. I am going to UCSF early next month for further testing. Waiting is a bitch, a scary bitch. I appreciate these site

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katieherwig's picture
Replies 3
Last reply 1/31/2017 - 2:11am

I'm being treated for Stage 4. I'm 2 1/2 years in and on my 32nd dose of keytruda. The last few weeks I've had swelling in my feet, legs, and arms. Has anyone else experienced this? My doctors can't find why. All my labs are great. I need a solution to stop the swelling if possible!

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casagrayson's picture
Replies 9
Last reply 2/1/2017 - 11:12am

I know that no one can diagnose a lesion on the internet.  I know the only way to determine if it is a serious problem is to have a biopsy.  However, I'm going to ask anyway.  My husband has had multiple primaries, none of which required SNL.  About a month ago, he had a nodule pop up.  It has continued to grow, and appears ulcerated.  

How common would it be for a person to have had superficial spreading melanomas but then have an amenolotic nodular melanoma?  Or does a sub-q ever present in this manner?  Maybe I'm being too paranoid, and this is nothing but a benign lesion or a squamous.  My husband has an appointment with the dermatologist at the end of February and doesn't want to reschedule for earlier due to a hectic travel schedule.  Based on the appearance of this thing, should I insist he get to the doctor sooner than later?

http://s102.photobucket.com/user/casagrayson/media/IMG_2717.jpg.html

Strength and Courage,

Susan

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AimeeB's picture
Replies 6
Last reply 1/29/2017 - 9:43pm
Replies by: AimeeB, Charlie S

Hi there all, I am new here. I have an area on my face/scalp/hairline. I am not sure when it started exactly, but have been aware of it for about a year. It has been slowly growing, but I have been successful in ignoring it, lol. I only really notice it when I blow dry my hair. Finally, I realized I needed to have it examined. I had a biopsy on Monday. Normally the doc will say "I will call you tomorrow (in 2 days, etc) to give you the results. This time he said, let's set up a time for you to come in and talk about the results. Ugh! We have online chart system, but they only put normal results on, until they speak to you. Of course, I have been stalking that site, and my results are not there. I am scared, as my father had melenoma on the top of his bald head 3 years ago and now has a big crater. I wish I knew how to post a picture. I also wish I knew either way, since the doctor didn't give me any non-cancerous diagnosis.

Thanks for listening to me. Just scared.

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/27/2017 - 6:22pm
Replies by: Mark_DC, Anonymous, Polymath, Aloha14, cancersnewnormal

Any help with this would be appreciated. I have spinal problems at multiple levels.

Neck especially c4 /c5. Large prolapsed disc at T10/11 and T12 also multiple problems lumbar region including L5/S1 . THis has been imaged by MRI at intervals and has remained stable.for well over a year.

Just had CT scan results-as part of ipi nivo treatment. Examiner is indicating melanoma spread  ( CT with contrast ) to T10/11, T12 and L5/ S1. THe last spinal MRI was May 2016. The previous CT with contrast was late September 2016.

Is there any chance that my disogenic disease has been mis- identified as melanoma ?

Which is the better imaging technique for spine ?

Is melanoma more likely to spread to areasof the spine which already have issues ?

Struggling to take on board the latest- with new disease identified in skull, lungs, groin, pelvis and spine

Probably clutching at straws...but thought I would ask anyway.

 

 

 

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Hello everyone,

On Monday I went to a dermatologist for the first time in my life. I'm a 29 y/o male, and I just learned about the ABCDEs of skin cancer two days earlier. Unfortunately I had a mole just north of my navel which seems to have met all 5 of the criteria:

Here's another picture showing the size better (the black ring is 6mm):

So you can see that it is about 10mm in length, bi-colored, and misshapen. Furthermore I found a photo of myself from 10 years ago, and the mole didn't exist back then. A photo from 4 years ago shows it, but it did seem a little smaller at the time.

Luckily I was able to get a same day appointment with the derm on Monday. After seeing the spot on my stomach, he let slip "Oh we definitely need to have that looked at" -- not the most comforting thing to hear. He also found a spot on my back shoulder which he was less concerned about, but he took a shave biopsy of both. I'm currently waiting on the results =/

I honestly wasn't very worried until the next morning when my wife was helping me change the bandages on my biopsy sites. The scar on my back looked pink/white, pretty much how I would expect it to:

However the scar on my stomach, the big ugly one, looked a lot darker. It made me wonder just how deep this thing really goes:

I know I have to wait for the biopsy results to come back to know anything definitively, but I'm very curious to hear your opinions about the scar on my stomach. Does the dark color (where my skin was removed) indicate deep roots? If so, do lots of moles tend to go deep, or is it more so a trait of cancerous moles? Did any of your biopsy scars look like that one, and if so what was the eventual diagnosis? Any other general thoughts?

I know I'm supposed to be taking my mind off of it while I wait, but I would much rather pre-process as much of this as possible. You guys seem like a very kind and welcoming crowd - I hope you don't mind my asking those questions. Thank you very much for your time.

Derek

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