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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_Paul_'s picture
Replies 35
Last reply 12/22/2016 - 2:22pm

I just got another set of scan results today. In a period of 37 days it really picked up the pace. So much so that the radiologist's first comment was "dramatic interval progression in metastatic disease burden". I could list all the organs, lymph nodes, etc., but you get the idea.

The MRI revealed my first brain met, a small 4 x 3 mm lesion in the right caudate head.

The TIL protocol allows for me to continue since the met is under 1cm. The oncologist thinks the risk of zapping it and waiting for a few weeks to see if it bleeds is greater than the risk of prolonging the TIL. However, even though it is now widespread, and even though I have a golf ball size tumor in my right lower lobe, my heart is still strong and my lung function remains at 100%. So I am healthy enough for the TIL. Porobably not the case in a couple of weeks.

Unchecked I have about a month or two left. So if the TIL doesn't work I don't think there will be time for another trial. I have new respect for the term "do or die"!

On the good side, my youngest daughter has volunteered to be a 24x7 caregiver which is required during the week of chemo. And my sisters are flying in from afar (Toronto and San Fran) to help after I am discharged from the ICU. And a lot of friends are volunteering to help with whatever I need, including giving my daughter a break from the caregiving. All that love really helps.

Even though I have my will in order, treatment plan in order, caregivers, etc. it feels like I'm an actor in a movie. I am hoping I come out of this alive, but it is all quite bizarre.

I really hope Josh's new combo treatment works. I pray for everyone suffering (physically or mentally) on this board every day.

- Paul

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Anonymous's picture
Replies 6
Last reply 12/17/2016 - 1:48pm

I met with the surgeon today regarding the reports. The depth of the tumor was 1.22 mm the same depth as what the dermatologist took off in the shave biopsy. The surgeon removed the margins according to guidelines and the area is cancer free. The OR report mentions there was a 1.5 cm margin around a 2mm scar( left by the shave biopsy). So 2.5 cm in total from the original lump I could see on my skin. So that's gone and I have to keep the stitches for 3 weeks as a lot of skin was cut to cover the space.

For the lymph node biopsy, the first sentinel node that was closest to the surface in my upper leg/groin area had a 4mm area of Melanoma. It was contained inside the capsule. That was removed. The second one which was deeper was clear and removed.  At my pre surgery consult the surgeons were doubtful that it had spread to lymph nodes but decided they better do the biopsy. It's a good thing they did and I kept insisting that I get into surgery asap!

The surgeon also checked the lump in my groin that is causing nerve pain. She said to put heat on it and move around more if I can, hoping it will shrink. If it hasn't by next week's app't she will drain it but didn't want to do it today one week after surgery and cause an infection. 

The next test I have to do is a PET scan of the remaining lymph nodes in my groin to make sure the melanoma hasn't spread to a different node, and to have a baseline. For anyone that has done these do they inject you with radioactive tracer again? If so, doesn't it take longer to reach all those lymph nodes than the sentinel ones? Then ultrasounds of groin lymph nodes every 3 months for the next year. 

 

 

 

 

 

 

 

 

 

 

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Michelle820's picture
Replies 4
Last reply 12/18/2016 - 3:07pm

Hi, I am new to this site. Today I had a WLE for a melanoma in situ on my left breast-very awkward surgery:/. I am very thankful that itwas caught early. However, now I'm having the mental part of the diagnosis weighing me down:(  I have always had issues with my sun damaged skin-way too many basal cells to count, but now having the "M" word hit me. Luckily, I was able to get into the pigmented lesion group at UPENN. I was very impressed there. The Dr seems concerned that I have a lot of "moles". He suggested that Iparticipate in skin photography.  Not too keen on getting body shots:/ if it will help I will do it. I'm nervous that I will end up with more biopsys to come which means more scars. I already have two on my forehead that I'm self conscious about. 

Just needed to vent about today-everything went okay but really wish it was not done under local. Being in the OR draped from head to toe, they covered my head and face! Almost had to ask them to move the towels and drape so I could breathe lol. I know the surgery location was the reason, but I didn't like that at all. Plus, hearing and smelling the skin burn is gross! And the tugging from sutures isn't pleasant either. Ughhhh definitely was more intense than what I expected:(

Thanks for listening. This seems like a very helpful and supportive site. 

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JoshF's picture
Replies 24
Last reply 12/19/2016 - 2:08pm

I'll keep it short & sweet. The CT at MDA showed liver progression with about 20 tumors. My onc was concerned and didn't want to wait 4 weeks for TIL. Thinks it's too risky. My LDH is astronomically high...I'm scared to say it. So my take away was time is getting short. He called my onc in Chicago and they agreed Keytruda and Abraxene was what we should do. I'm not even going to research, I'm just blown away. Anyone have any insight on this combo? I think Artie did it just don't remember but it made me think of him...just broken hearted. Not to mention my flight home is now cancelled. Just want to hug my wife & kids.

Josh

Let's work for better treatments....for a cure!!!!

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BillMFl's picture
Replies 4
Last reply 12/23/2016 - 9:26pm
Replies by: Carole K, BillMFl, jag, Janner

Been a long time. Two in-situ primaries about 12 years apart. Many many basil and squamous. Lost count after 30+. Used to be very active here but moved aside for others with greater needs. See that Janner is still on here! Great gal. One of the best. Currently doing Efudex on scalp for numerous aks. Still going strong and living large. Found both my primaries and most of the others. Am a pro at early detection. Both Derms thought my primaries were nothing until they got the results. I have also spotted primaries on other people and urged them to get checked. Got big hugs when I saw them later. A very early melanoma usually does not look all that unusual. Especially a superficial spreading. Both of mine initially presented as a light tan macule with a slightly shiney sheen. Normal skin is more like flat latex paint. Beware of a slight metallic sheen. Place a drop of baby oil or similar clear liquid on the lesion and look for tiny little dark brown or black spots drifting up from the DE junction. These little blobs are the first sign of abnormal nesting of melanocytes. They are easy to see with a magnifing glass. Not easy to see with a naked eye.  This is the easiest way to self check any new spot that is suspicious. By the time a lesion fits the ABCDs it may already be more than insitu.Superficial spreading is by far the most common and also the easyist to find very early. Other types are more difficult to find early but are also less common. There are now many many more new treatments for Melanoma that there were 15 years ago when I was Volunteer of the Year at Moffit Cancer Center here in Tampa. Truthfully, I burned out after spending so much time with many who were less fortunate than I was. I am happy to see that great people like Janner are still on here. I salute you all and a heartfelt wave to any other of my old friends who are still active here! For those of you who are new do not dwell on statistics. Those numbers are pretty accurate for a large population of patients, but not highly accurate for any given individual. I have known many long term survivors whose initial prognosis was not good but who fought with everything they had and defied the odds. Bless you all! 


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SOLE's picture
Replies 16
Last reply 12/18/2016 - 1:05am
Replies by: SOLE, _Paul_, Anonymous, Maureen038, Bubbles, Janner, Ed Williams

To you all good people, I am strugling still with my followup and I am advocating for myself everywhere I can.

Still Stage 3b according to brain MRI I had prescribed by my GP! Oncologist wants to CAT scan my groin next February! I think I am being played. Anyway, i will have my chest CAT Scan on Dec. 22nd. Again prescribed by my GP to releive the stress and anxiety I have been experiencing.

On the blood disorder front, hematologist was really rude last week. My platelet count does not add up to 100k. last September, I scored 66k. I had 20 pounds more on my body then. Now I score about 40k. Hematologist lectured me about lowering my expectations about clinical trials and advised me to set my affairs in order!!!!! Think he forsees that I won't have much choice left come Stage 4. Disorder is being investigated. Not quite a Bernard Soulier syndrome he tells me. On 40mg Decadron for 2 days to shut down my immune system to see if there is a response from my bone marrow...

And to top this off, I have a bad acral nodular mel that I don't know what to research for anymore. Old statistics are predicting that my chances at 5 years are...... 0%!

Please, Bubbles, Janner, all of you good people, have you ever been able to enter a trial without meeting all the criterias? 

Clinical trials on acral nodular melanoma are absent of the picture.

Do you guys know if my acral nodular will behave like a normal cutaneous one? If so, it's not so bad. I may have a fighting chance. Depends on the mutations I suppose. Could the combo nivo + ipi be of help?

What sould I be looking for? What types of mutations? I have listed CKIT, NRAS, BRAF, CRAF, PD-1 expression,... What else? I am in the process of seeing Dr. Wolchok at MSK early next year and have him tell me his opinion. I need hope. Desparately.

You see, I want a fighting chance. My recurrence rate is so high, I want to be prepared and FIGHT! I was thinking of having exome sequencing of my tumour... Could this help? Do you know a place it can be done? Money is no object at this point.

Do you know of a way, a real real to increase platelet count? Even with a syndrome? I will try with nutrition and also maybe with my too expansive homeopath.

Please, help... and thank you for your time.

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Jubes's picture
Replies 4
Last reply 12/16/2016 - 5:38pm

Hi all

i just wanted to tell you that I am leaving today (from Sydney, Australia) to visit my son and his family in New York and it makes me feel a bit closer to all you wonderful folk from the USA who answer my posts here! Two years ago we did not think I would see that second grandson be born and I am just so grateful to modern medical science and my amazing team of doctors. Not to mention my orchestra who have put up with my long absences from work. I almost feel like trying to make an appointment with dr Weber in New York just to see him in person!!

i am ned now after lung resection and we will pet in January to see if disease has progressed anywhere else 

the only issue I have now is that my muscle stiffness seems to be returning now that we have stopped the infliximab maintenance (out of abundant caution)  my doctors say there is no evidence that infliximab has caused progression in the many cases they have used it for colitis but we are being careful and have noted my progression after infliximab for other patients information. Has anyone else had experience with infliximab for joint and muscle pain? What do you take for these symptoms if you don't take infliximab ??

thanks

anne-Louise 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/16/2016 - 6:41pm
Replies by: Casitas1, debwray

I'm stage 4 with many 1-3 cm mets strewn across my body. I've responded well to treatment (PD-1) according to scans from 2 weeks ago. LDH is low, and eos/lymphocytes are in the right range. I remember (in retrospect) having mild  muscle twitching when I first started having pains associated with developing mets. Those twitches last about 3 seconds at a time, but recur frequently. They've been happening more frequently lately -- does anyone know what the cause of these twitches might be? I'm thinking its some sort of chemokine or cytokine reaction in my body, or some other side effect of my body duking it out with the cancer.

does anyone have any experience with muscle twitching? better yet, do you know what the cause may be? Keep in mind that this happened before I started PD-1, and has just started up again. 

Thanks guys

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_Paul_'s picture
Replies 15
Last reply 12/18/2016 - 12:53pm

I will be starting a week of "Lympho-depletion" chemo on Tuesday in preparation to receiving my lab-grown TIL. But throwing up has always been at the top of my least favorite things list. I have some Ondansetron, and I think I heard one of the people on my care team say its ok to double the dose, but even so I suspect I will still be sick. My cast iron stomach is not what it used to be,

I asked the folks in my cancer survivorship group their thoughts and what I cam away with was CBD capsules. One of the guys there (a very conservative guy) has been on chemo for years, and says the CBD has dramatically improved his quality of life. Apparently the CBD doesn't make one high like normal pot does (very appealing to me). The folks on my care team said pot was ok so long as I didn't smoke it.

So I am planning on purchasing some CBD capsules.

Thoughts?

Thanks - Paul

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miaka618's picture
Replies 8
Last reply 12/17/2016 - 10:29pm

What is the significance of the mutation? Is it good to have, or bad? I think my tissue has been sent out at least twice to find out if I have the mutation with two different doctors, and I haven't found out the result with either one, so I'm not sure if the tissue was lost in the mail, or what. After my last pet scan, I had a couple more nodes light up. I had a needle biopsy done on the larger node which came back positive and the doctor talked about finding out the BRAF mutation which reminded of that. 

Back to surgery on Wednesday, and the other 2 nodes they are going to be watch and wait. The surgeon is concerned with nerve damage because of scar tissue since this is an area I had the surgery previously. 

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Nicklindner's picture
Replies 9
Last reply 12/17/2016 - 4:37pm

I posted a few weeks ago after my diagnosis of stage 4 metastatic. I had my follow up with UPenn and met with a great doctor that offered some hope which was on short supply at that moment. I have a couple questions. Being younger, 33, are their side effects that might be more common for me or anything I should do to help with the treatment?

second the tumor on my lung in 3.8 cm. Is it possible for this to go away completely from the treatment and if so what would be a realistic time frame for that to happen- should my body respond to the drug.   Thanks again to everyone who reached out to my last post. I found it incredibly helpful. 

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Aloha14's picture
Replies 3
Last reply 12/15/2016 - 10:25pm
Replies by: Aloha14, SABKLYN, Anonymous

This nerve pain in my groin after the lymph node biopsy started yesterday and hasn't stopped. The lump has gotten bigger.  I finally spoke with the surgeon's office and they will see me tomorrow to possibly drain out the fluid. I didn't know removing only 2 lymph nodes would cause this much fluid. Has anyone had this done?

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Fsudom959's picture
Replies 2
Last reply 12/15/2016 - 10:02pm
Replies by: Fsudom959, Janner

Last year I was diagnosed with stage 2a Melanoma.  I had it removed and am doing fine now.  I recently found out my father (whom I never really knew) and his brother both passed away from pancreatic cancer.  I thought that maybe this is hereditary and googled it.  Has anyone heard of the CDKN2A gene mutation that causes both melanoma and pancreatic cancer in almost 50% of people?  It says it is rare.  Does anyone here have it?  Do you know how much it costs to test for it and if insurance covers it?  I had a BRAF gene mutation test done (my dermatologist sent it out without me knowing) and I got a $2k bill.  Thanks for any help! 

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Dear MPIP Community:

We have been contacted by a reporter from USA Today who is looking to speak with 2-3 melanoma patients who are currently on treatment and are:

  • Responding well to treatment
  • Not responding well to treatment and/or experiencing “poor” quality of life
  • Experiencing a financial burden as a result of their melanoma diagnosis 

If you fall into one of these categories and would like to share your story, please email Jennifer Glicoes at JPA Health Communications at jennifer@jpa.com. As always, we appreciate your assistance and willingness to help spread awareness about melanoma.

Happy Holidays to you and your families,

Shelby - MRF 

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Anonymous's picture
Replies 3
Last reply 12/16/2016 - 7:55am

Hi Folks,

Posted re raised liver enzymes earlier in the week. Was called back in today for monitoring. Need to keep taking the 50mg of steroids each morning as AST / ALT still high- one is still 4 times ULN the other has dropped back to double...... So back again on Monday to see if it is resolving and if we can start dropping the steroid dose I guess..... good news is - didn't need the overnight bag... They also confirmed that hepatitis can increase the levels of LDH so will run with that explanation for now.  

Best wishes to all,

Deb

 

 

 

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