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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Mli0709's picture
Replies 12
Last reply 8/12/2016 - 4:30pm

Hi Everyone!

 

I just wanted to give you all an update on my mom after my recent post a couple of weeks ago (doctors gave up on my mom post - if you didnt read it). I just want to thank everyone for the amazing positive feedback I received on my post through MPIP. The advice, encouraging words and resources suggestions really helped me and motivated me to find a solution to my mom's prognosis/insurance issue. I have some good news and bad news.

 

The bad news is that my mom was recently hospitalized due to a pleural effussion that the doctors said is due to the malignancy so that means that the cancer is advancing fast. My poor mom had to get 2 thoracentesis and will have to get a permanent catheter placed in next week. If any of you have any experience with this process and have some advice on how to better manage the symptoms/catheter related issues, please let me know. They repeated a head CT in the hospital and no signs of new leasions in the brain (thank God for this). The problem is that it has been almost a month since no treatment so this concerns me. Of course the in-house oncologists gave us the same sad story when they came in the room ("I'm sorry there's nothing else that can be done for your mom") but we tried to still remain positive and tried to not let their words bring us down. My mom is doing alot better now compared to this weekend.

 

The GOOD news is that I was able to find a hospital in Dallas (4 hrs away from us) that has a melanoma clinic and accepted my mom despite having no insurance. She will be seen at UT Southwestern in Dallas and the melanoma specialist she will see is Dr. Arthur Frankle. Does anyone have any experience with him? If so I would appreciate it if you shared. I was told he has 35 years of experience in melanoma and he is the head head of UT Southwestern’s Phase 1 clinical trials. Our appointment is set for next week tuesday and although its great news that we were able to find a new doctor for a second opinion I am terrified of what they would say. I am really hoping he has a positive view on the situation and we dont walk out of that appointment with another "I'm sorry, there's nothing we can do" discussion. I am really hoping that he will be able to give us some insight and provide reasonable treatment options. I am also proactively trying to register my mom in Moffitt hospital in Florida (they also have an assistance program for cancer patients and have melanoma clinic/clinical trials) in case Dallas doesnt work out. We have a family member in Florida who told us about the hospital and said many good things about the place.

 

Lastly, I am scheduled to take my NAPLEX (pharmacy licensure examination) next week after the appointment and I am really anxious and nervous that the outcomes of the appointment will affect my performance on my exam. I have been studying very hard and I am still trying to keep a positive attitude and remain focused while I study. I thank God for this group and I am certain that God has directed me in the right direction so far despite the circumstances. At this point  I am placing all my trust in him. Please if you can, send us positive vibes and prayers as we prepare for next week's busy schedule!

 

Thank you everyone!

Maria

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Replies by: susanspotless, MoiraM

Hello,

I am wondering if anyone has any knowledge or experience with  immunosuppressant drug treatment. I have had dozens of moles removed, they were all dysplastic. My melanoma was diagnosed as 2A, ulcerated and a high miotic rate. I have been NED for 7 years and while I don't stress over re-occurrance I do worry about the risks of  immunosuppressant drug treatment.

 I have had chronic idiopathic urticaria ( daily hives) and angio-edema ( subcutaneous tissue swelling) since 1983. Angioedema causes large, disfiguring facial swelling, the hives are hot, itchy and some are painful. I have head two long remissions, first 15 years, then 12 years. My last flare was 3 1/2 years, the current one 2 years. Antihistamine treatments have failed as well as prednisone, and just recently a prescription drug named Xolair, a protein that resembles one type of human antibodyI am afraid to take  immunosuppressant drugs because of the risk of the malignancy they all carry.

I'd appreciate any help anyone here might offer from experience or knowledge, thanks!

 

susanspotless

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Shaneswife's picture
Replies 7
Last reply 8/11/2016 - 7:58pm

Hello. Curious if anyone here is in the trial on interferon or ipilimumab vs. Prembrolizmumab? We are considering this trial for my husband once he's 4 weeks out from his clnd. Looking for feedback about the trial experience.

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Amanda's picture
Replies 1
Last reply 8/11/2016 - 7:54pm
Replies by: landlover

Hello all, I havnt been on the site in forever it seems. Most might not know my boyfriend Randys journey, but I'm sure someone will remember us.

Randy has been getting pembrolizumab, or keytruda as they call it now for 3 1/2 years and counting. He's had his ups and downs but had a good response then stable disease thereafter. He's had many multiple hospital stays from pnumonia turned septic, but recovered. A tumor in his lower lung is blocking the lowest part of the lung so he gets pnumonia easily.

He has to take pills everyday because his adrenal gland failed from the treatment.

After his recent pnumonia/sepsis episode where he was unconcious for 3 days we learned 2 new Mets were in his right and left thigh respectively with all other tumors slightly smaller or stable. They did a biopsy on one of the thigh tumors I assume to test for mutations etc. On the plus side one tumor on his chest has disappeared and the other on the chest is a bit smaller. He's still receiving the keytruda and this last dose has him feeling sick for a week after infusion. Severe fatigue. He was in bed all day for 4 days and then came out of it by day 7 and is back to feeling good and being really active.

So Dr. Ribas says the good guys and the bad guys are fighting right now. Will know more about biopsy on 2 weeks.

Oh and the side effects he was feeling this week which he didn't really get in the beginning were extreme fatigue hot and cold flashes and sweating. Sleeping a lot but still feeling tired. But a week after infusion he feels good again. Oh yeah nausea and stomach ache too. Couldn't eat. No appetite. But that's all back to normal a week after.

-Amanda-

"Give thanks in all circumstances"

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landlover's picture
Replies 6
Last reply 8/11/2016 - 7:27pm
Replies by: landlover, Anonymous, rosa1, MoiraM, jennunicorn

My first CT scans & MRI were in April. I had two small lung nodules at that time & pathological nodes in my neck.  I have since had a nevk dissection and am stage 3c.  I had scans this week in preparation for joining a clinical trial- but got word today that I have something new in my left neck and that one on the nodules has grown from 3mm to 7mm, and that I have one new lung nodule. Now they have ordered a PET. 

What experiences have others had with growing lung nodules?  It seems ominous to me.  Am I about to join the stage 4 folks?  

My daughter is getting married on a week and I don't want to share this news with my family yet. 

Thank you for your input!

Peggy

Stage 3C, primary on neck, neck dissection May 2016.

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MissJenn's picture
Replies 38
Last reply 8/11/2016 - 4:31pm

Hi,

I really would like as many stage 3A friends on here as possible if you would please respond...   I find myself with all sorts of issues, questions, feelings, well, everything that sometimes I feel is either too heavy for earlier staged melanoma patients, or way too trivial for even more advanced staged patients...  please get together with me if you would...  if you were previously stage 3A and would like to share I would appreciate also.  Right now everything is so new to me...just need to express how I feel and don't want to offend anyone.

IT'S YOUR BODY AND YOUR LIFE...BE INFORMED!!!

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Anonymous's picture
Anonymous
Replies 0

I was diagnosed with Stage 4 metastatic melanoma of unknown orgin in March 2014.  Over the course of two years I've been on interferon, then IL-2, Yervoy and Opvido.  Had some good response with Opvido, but have stopped responding.  I am currently enrolled in clinical study at  Sammons Cancer Cener in Dallas.  This is a genomic study and have been matched with the drug Palbociclib.  This was recently apporved for breast cancer.  Just wondering if anyone has any experience with this drug/study as it pertains to melanoma?  Been on this for 3 wks (3wks on/ 1wk off) and so far side effects are tolerable.  Thanks for any info!

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dmturner's picture
Replies 14
Last reply 8/11/2016 - 10:00am

Hi All:

Pretty new here.  Sad but true.  My story goes as this...I work on my feet and was having an area on my heel that was sore I put up with it for a couple of months then decided to go to my podiatrist (June 2016).  He thought it was a plantar wart and cut it off and sent tissue to the labs.  "No worries, that is just what we do".  Well got a call a couple weeks later and he was frantic, called me Friday night and Saturday afternoon.  I of course called him back when I heard his message.  He already got in contact with Skin Cancer Specialist in Dallas.  Got an appointment and then a week later had the Mohls procedure.  It was pretty deep 4 mm.  So he recommends me to a doctor at Texas Oncology and see him and put in orders for a brain MRI and Pet Scan the very next day.  All came back good.  So he gets me in to see the surgical oncologist and we make a plan to have a SLNB the next following week.  (I am off work for a medical leave, can't work with big ole hole in my heel).  The one biospy behind knee was negative the one in my right groin was positive.  My leg is a bit swollen still but I have been working.

Today, just meant up with my oncologist and he suggest the "CLND of the right groin area but there is other options."  By the way I read up on thru this forum.  Yervoy.  I weigh the pros and cons and decided on Yervoy.  Because of the possible long term side effects of lymph node dissection.  I work on my feet.  I would be off work for 4-6 weeks.  I have used up sick time.  Etc.

My question.  Has anyone else decided to do this route.  I mean if it has spread and the PET scan did not detect it then the Yervoy would help with the whole body.  What if there isn't anymore cancerous lymph nodes?

Just so overwhelming.  I mean from June 10th (podiatrist) to August 9th.  All this in a 2 months span.  I have no other issues except high blood pressure and cholestral  both under control.

Thank you in advance!!!

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JoshF's picture
Replies 10
Last reply 8/11/2016 - 7:56am

So I had last radiation treatment, 3rd and final infusion of ipi (start washout for trial) and interesting blood work results. Not to get long winded but trying to make sense of what I found on the one and only Bubbles blog in regards to NLR and elevated eosinophils. So I noticed in the past 3 blood tests that my eosinophils have gradually been going up and this last blood test shocked me a bit. Now I think I understand NLR and it's easy to figure out...I've always had an NLR less than 5 which would make sense that I did initially have a good response to ipi and hoping that ipi does something for me again this time. What really caught my eye was the elevated eosinophils. I know different labs use different ranges and I've noticed this from MDA, to my local onc to my PCP. That being said, for the the most part the ranges fall into what Celeste had on her blog...this is what my current blood test said...

Eosinophils 1.1/Kmcl with a standard range of .10-.50

Eosinophil % mine was 20%...normal range 1-6%

Both of these were marked as high...

This explain why I feel like I have a fever at times but no temperature? Or can eosinophils be elevated from radiation? Seems unlikely and nurse said high doses of radiation lower some blood counts and that my dosing wouldn't be significant. I did my NLR and it was less than 3. I of course am trying to be optimistic but cautious because as many of you know, I went NED on ipi only to be back in trouble. I by no means have been typical which is why I tell myself not to look at this stuff...I guess it's the hope that I can and will overcome this to watch my kids get older. It's why I keep seeking out everything and anything to beat this...

Josh

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

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BrianP's picture
Replies 16
Last reply 8/11/2016 - 7:52am

Last week I was in efforts to return to my pre-melanoma flying career and purchase a house.  That all changed Tuesday when I got the result back from my latest scan.  After two years of stability and one year off treatment it looks as if my melanoma is on the move again.  To say this sucks doesn't do it justice.  I'm still having a hard time believing it. 

Meeting with Dr. Weber tomorrow to discuss options.  The obvious choice is to restart nivo and hope it picks up right where it left off.  Burning the midnight oil on Trialsl.  I might have some challenges with some of the various trial prerequisites.  Fortuntely right now I only have two small nodes grouped together so having a biopsy and a marker tumor may be difficult if that's a requirement.  If anyone has any idea on trials let me know.  I really like the sound of Josh's trial but again not sure if I would qualify.

Sorry to be a Debbie Downer.  I know anytime there's news like this we all feel a little more vulnerable.  At first I was a pretty down but I'm starting to get the fighting spirit back.  I'll let you know what Dr. Weber says tomorrow.

Brian

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Anonymous's picture
Replies 1
Last reply 8/10/2016 - 8:45pm
Replies by: Anonymous

we DO understand all treatment options out there and have been through most of the approved newer ones. Were are curently looking at intratumoral injections of il-2 . So far we can not find anyone curently doing this. They have done this at Huntsman combined with yervoy but not now. I think they are doing it now but not in the US. So if anyone has run across intratumoral injects of il-2 or combined with yervoy or keytruda / opivido let me know. If you get a chance ask around AND THANK YOU IN ADVANCE.

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Aaron's picture
Replies 7
Last reply 8/10/2016 - 7:12pm
Replies by: BrianP, Ed Williams, KAF, Aaron

Well I guess it's my turn for an mri. I am on the ipi/nivo combo and scheduled to have my fourth treatment next Tuesday. During my third treatment I had a reaction where I broke out in hives during treatment. The about 5-6 days after treatment I developed a low grade fever (99.8) that lasted about 5 days and my forearms were sensitive/sore to the touch. Following my fever days I developed a low grade headache that is barely noticeable but has never gone away. I am now 10 days into this headache roughly and now have a MRI scheduled before my next appt this coming Tuesday. I am sure it is a pituitary issue or something of that sort and am remaining positive that this is is a sign that things are working in my favor.  Just hate that this will probably delay my next treatment as I was hoping to have all 4 done before school/work started back up this fall and would only have the nivo component to deal with. All in good time though. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/10/2016 - 6:00pm
Replies by: Aaron

Hello!

I had a WLE for a stage 1a lesion on my right lower calf on 07/27- 1cm margins with skin graft. I'm just wondering if you can give me any insight into how quickly I should expect it to heal?

Right now it pretty much looks the same as a week ago when they took the boot and wound vac off. It looks less like skin and more like flesh. There is no sign of infection but I'm a little worried the graft isn't taking since there is a pocket of blood in part of it.

I messaged my surgeon but it will take a day or two for him to get back to me. I'm cool with that since I'm not sure there's too much to do about it right now.

Any input from those who have had a WLE with skin graft?

Thank you!

Alc

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/10/2016 - 5:26pm
Replies by: Vas, debwray, SABKLYN

Hello , in April I noticed a 2mm black mole on my lower bicep, nothing irregular other then the color,  black as all my other moles are brown. Both my family doctor and dermatologist said to observe it and if it grows to remove and biopsy,  but since I didn't like the color I had the mole removed and sent to lab. This is what they said..

 "atypical compound melanocytic proliferation,  extending to the base of the specimen and very close to the peripheral edges.  NOTE: THIS LESION shows some features of a compound melanocytic nevus with architectural disorder and cytologic atypia of melanocytes (dysplastic nevus) as well as overlapping features of a pigmented Spitzoid proliferation/neoplasm. Atipical findings also include focally prominent pagetoid migration that be be related to prior trauma, however, an evolving higher grade lesion / melanoma cannot be excluded with certainty. A recent excision is recommended to ensure the entire lesion has been removed and for further evaluation of any remaining lesion.

 I'm confused as even my dermatologist couldn't fully explain to me what this means , I had WLE done on Monday and waiting for my results anxiously I might add! 
 
What I can't figure out is , is it DN AND if so mild , moderate , or severe? It's very confusing as because they do mention melanoma in the report.  Any input would be appreciated ! Thanks
 
Vas
 

 

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Momofjake's picture
Replies 20
Last reply 8/10/2016 - 2:40pm

Hi all,

Just checked in to see how everyone is doing. Crazy, my same people I look for are doing the same thing we are over here. Enjoying the good days, fighting through the hard ones and always looking for the next option or making big decisions. To all of this I say--you are one tough group! Inspiring, supportive, knowledgable, kind and very helpful! 

So Jake. He turned 19 Friday. A milestone. Another birthday! Yay! It's been a rough go lately. Jake failed keytruda. Disappointing to say the least. He just kept growing more tumors. His tumor load is so large now they put him on the Taf/Mek combo. Interesting that our specialist wants to wait for what he thinks is the optimum point of shrinkage the stop the combo and move right to ipi. Jake has not tried ipi. Well, after 3 good weeks on the combo he became VERY sick. Ha spent 7 days in a dark room w high fever, rigors, vomit etc. He refused to see his doctor. I knew he had to get up with so many lung tumors. He finally did. He is 6'1" and is down to 148 again. He just doesn't look good. They cut the Mek. He will start it again on a lower dose and is back on the Taf. His back was hurting so they did an MRI. His spine tumors have shrunk. That made for a pretty happy birthday:) Full scans June 13. Still plugging along. I just booked a big vacation Jake chose for July 22. A private, awesome beach house! Can't wait! Prayers and love to you all! Enjoy every good day!! We can do this❤️

Kerri--momofjake

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