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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TexMelanomex's picture
Replies 7
Last reply 3/26/2017 - 4:55am
Replies by: Anonymous, TexMelanomex, Gene_S, Momofjake, jahendry12

Hey Warriors!

I completed the WLE & skin graft on my scalp and SLNB at MD Anderson on Tuesday and returned home today. I'm a little punchy from the high dose of Norco but I wanted to give an update (so please forgive any typos or ramblings).

So...the lymphocyntigraphy was the easiest part of the process by far. It took about 90 minutes and 4 injections to get all the 3D pictures to work from. These stung a little but not too bad as they were on the scalp.

Then it was on to pre-op where Dr. Ross estimated the process would likely take about 3-4 hours (it ended up taking 5.5 hours). It turned out that I had 4 nodes at three sites that lit up and 2 were very deep in the side of the neck, the other two were in the back of the neck. I also had a skin graft (from my bum of all places!!) along with a bolster placed. I guesss people were right all along, I really am a "butt head". Dr. Ross finished up with me around 8:00 pm and my fiancee was the only one left in the waiting room. He spent the time to sit with her and explain how things went which she really appreciated. (Kim, he hasn't changed a bit and was very compassionate with her as she was worried sick being the last person in the waiting room that day).

I was kept overnight in post-op due to pain (which I really cannot remember having at this point) and the administration of dilaudid (if you've ever had dilaudid, which I hadn't, you can attest to what an incredibly powerful drug this is). I'm acutally glad they did this because it made me feel a little better being at MDA for the night since this was my first surgery of any type. I like to think I have a high pain tolerance but apparently I wasn't giving them a good answer on the 0-10 pain scale. To be honest I was still so loopy from anesthesia I don't recall having the conversation at all but was reminded of all the goofy things I said/did that night by the attentive nurses.

Dr. Ross was back in action early the next morning to come see me and discharge me. Overall, very impressed with him and MD Anderson. The bolster feels weird but will be removed next week and hopefully I will have results from the lymph nodes the same day but it may be a few days after the removal. I'm very interested in seeing what skin from my bum looks like on my head. Between doses of Norco I'm still seeking the best way to camouflage this bolster...fortunately its positioned high on the back of my scalp so I can manage to fit a baseball cap over it, a bandana (do rag style) seems to work, but the real trick will be next Monday at work. I work in a professional environment and a hat is kind of hard to pull off, a bandana simply wouldn't fly, so any suggestions are greatly appreciated.

Despite the purpose of this trip to Houston I found ways to enjoy the time down there. Going to the Galleria, trying some local fare, and simply enjoying some simple things was great. Of course there isn't much enjoyable about surgery, but even in that I tried to remind myself (when I was coherent) that hey, I'm alive and I'm in the fight! The waiting for things to happen was really bothering me and even though I might not get the results I want from the SLNB I at least got the primary cut out and  I can prepare for the next phase of battle.

I want to thank all of you for words of support and encouragement, for sharing your experiences and for being part of this community. In the short time I've been a part of this I have learned a ton and really appreciat all of your experience and strength!

 

Tex

 

Tex

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Anonymous's picture
Replies 1
Last reply 3/26/2017 - 1:56am
Replies by: Anonymous

I am a Phase I clinical trial participant with a BRAF V600K mutation at the University of Michigan involving a combination trial between Dabrafineb, Trametineb, and GSK2141795.  I am one of four out of eleven patients whose metastatic melanoma has stabilized at U of M during this trial.  GSK2141795 is owned by Novartis, but was manufactured by GlaxoSmithKline.  

Novartis refuses to manufacture any more GSK2141795 and we run out of meds on April 30.  

Does anyone have any extra GSK2141795?  Or know any details regarding the sale of GSK's oncological division to Novartis in 2014?

Novartis included the information regarding GSK2141795's unavailability in the trial paperwork we all signed, but it came along with a verbal promise that another drug was under development and would be ready to take its place.  It's not ready and they don't want to manufacture any more of it.

This is such an emotional rollercoaster; I run from being grateful for having a few extra months to live, to feeling really angry that a drug company knows how to solve this issue, but refuses to do it.  I was hospitalized for 6 days with allergic reactions and risked blindness three times with dosage adjustments to prove out this drug.  Now it's working and there isn't any more of it.

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Tnscin84's picture
Replies 6
Last reply 3/26/2017 - 1:37am

Hello all. I come here for support for multiple people I know that have been diagnosed with MM. I pray for all of you daily. 

my Hx: 2009 Spitz nevus benign and removed completely and then some. 

Then ive convinced myself (after multiple people have been diagnosed around me) that I'm going to get or already have it. Because I had a few blistering sunburns, I used the tanning bed intermittently in college and have lots of little moles--haven't been out in the sun but twice since 2009. 

I had a moderately atypical one removed from my left shin almost a year ago and they got the lesion completely--and said if I wanted to have further margins I could for piece of mind but it wasn't necessary. So, with my anxiety--I had it removed which showed nothing in that skin.  Then a tailspin of anxiety (and hospitalization from panic) later--I have had multiple biopsies (15) that I have begged for--they have either come back "solar lentigo" or "nevus with architectural disorder with no significant cyrologic atypia).  I go to a derm who helps run the melanoma clinic.  I sent him this picture but it's the weekend and I'm having a panic attack. I'm not sure if this is normal pigmentation process around the scar or melanoma /cancerous. I can't remember if I noticed it last month. 

 

 

We just went theough IVF and after reading all the stories about pregnant ladies on here--I don't even want to try to get pregnant now even though my derm said pregnancy does not cause melanoma--it just might bring it out faster if it's already there but since I do monthly skin checks, am about do not mole mapping, and I see them every 4 months (bc I am paranoid), he said I would likely catch if early/in Situ IF* that would happen. I am in therapy for OCD/catastrophic thinking  I'm hypervigilant because of the experience biased or knowing people with it.  I try to remind myself most everyone has gotten blistering sunburns and overexposed to the sun but not everyone gets it. But it's just exhausting and I'm just waiting for it to happen.  very unhealthy I know.  I like reading all the information posted on here that's educational for sure.

 

Thoughts on this pigmentation at the bottom of my scar? Normal process 9-10 months out? I go Thursday to see him for a different issue but it's he weekend and I'm having a panic attack

 

http://i1347.photobucket.com/albums/p710/Anna_Cousar_Mechem/IMG_7754_zps...

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JoshF's picture
Replies 22
Last reply 3/25/2017 - 9:27pm

Thought I'd drop in and say hello as it's been awhile. I hope everyone is doing well. I'm still trying to recover from TIL and have been very weak & lethargic. I was actually supposed to go to MDA this week for the Keytruda portion of the trial but too weak. I'm going to withdraw and do Keytruda at home. I've never been so physically impacted by this disease and the treatment. I had one sub-q shrink to nothing but that's it. It's been about 6 weeks since TIL infusion so I'm still holding on to hope this works. Not sure with performance status that I'd have many options left. I hope everyone is well, I saw Brian good news, saw Jake is doing good but having SRS...I didn't look past 1st page but I think of you all often. Blessings 

Josh

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

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I am waiting anxiously to hear from NCI to see if I am going to get into TIL trials. In the meantime, Abraxene has kept tumors from growing but I feel like it's bringing me down physically. I also made an appointment at Sloan Kettering in April just to see what they have to offer. Anyone seen Dr Shoushtari? I have been amazed at how smoothly things have gone with both places. Thank the Lord! I am praying and waiting to see what is my next step. It is a little scary, but I am excited to get this behind me. It's helpful hearing from those who have paved the way through TIL. I read all of your posts even though I don't always respond. You all have helped me gain courage to get to this point.

LisaG

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BarbaraF's picture
Replies 1
Last reply 3/25/2017 - 8:22pm
Replies by: debwray

My husband is early Stage IV melanoma. Next week he begins a clinical trial with Dr. Ann Silk of the Cancer Institute of New Jersey. 

Phase 1b KEYNOTE-200 (STORM study): A study of an intravenously
delivered oncolytic virus, Coxsackievirus A21 in combination with
pembrolizumab in advanced cancer patient

In this study, sponsored by Viralytics.com, a cold virus will be injected into his tumor. 

A similar trial is ongoing at Memorial Sloan Kettering, with the virus delivered intravenously, 

We have high hopes for the reported success of this trial but are mildly concerned about whether injecting the virus into his cheek could possibly damage his facial nerve. The tumor is just below his ear. 

any feedback? 

 

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Nick C's picture
Replies 3
Last reply 3/25/2017 - 5:18pm

After four Keytruda treatment, I had my CT scan. The results:

1. Slightly improved metastic disease.

2. There could be a new focus of a tumor in the left axillary region. (Had two nodes removed at the end of October).

3. Otherwise no convincing new metastic diease.

Taken as a whole....this is good new for me.

Nick


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ajpeterson's picture
Replies 11
Last reply 3/25/2017 - 4:08pm

I was diagnosed with Melanoma a few weeks ago, it is in my left lymph node in the groin area.  I had a think mole removed on that same side on my lower back 2 years ago and it was removed with "clean margins". 

I have a meeting with an oncologist who specializes in melanoma next week, and I've been told that I'll need to have it removed, along with others around it...plus something else? (immunotherapy, chemo, etc).

I'm a 3rd grade teacher, and I'm trying to figure out if I'll still be able to carry on with my job, taking minimal time off for surgery and treatment.  Do you think this is realistic?

 

 

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Hukill's picture
Replies 7
Last reply 3/25/2017 - 3:15pm

I will speak with my pharmacist next week but I was wondering if anyone had any info on this. Before starting the ipi/nivo combo my wife and I were specifficaly told that we could not risk exchanging body fluids due to risk of transfering ipi/nivo to her. We were told to not even share bites of food or use the same spoon ect. We were also told to use condoms. Did anyone else on the combo receive this information when you started treatment? If so where you given a time frame after stopping treatment when you no longer had to worry about transfering body fluids?

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mrsaxde's picture
Replies 8
Last reply 3/25/2017 - 2:34pm

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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welcome32's picture
Replies 3
Last reply 3/25/2017 - 1:48pm

My daughter was diagnosed with melanoma in August. 2016.  Her melanoma was just under 1mm and had it completly removed.  She also had the setiinel lymph node removed which came back with micro cluster of cells.  She is being seen at Sloan Kettering in NYC.  At this point she is not in amy treatment, but is due for a brain MRI, pet scan and ultra sound of under her arm where the Sentinal lymph node was removed.  She did have an ultrasound in December of that area and it came back clear.   After the Surgery she had numbness under her arm, which I know is normal.  In any case for the last week and a half she has been periodically feeling aware that something is different in her armpit.  She is not sure if she is just noticing this because the feeling is comng back in her arm or if it is new pain.  She feels a subtle ache in the area in her armpit where the lymph node was removed.  in the last few days she has felt the sensation of it being swollen, though it doesn't visually look swollen and there are no visible lumps.  It is tender to the touch.  She lives near my other daughter who touched the area that she fees is swollen and she did notice that the tender area feels slightly firmer that\ the unaffected side.  We have an appointment scheduled in 3 weeks for all the tests.  Just feeling so so anxious.  Any suggestions, advice.......

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/25/2017 - 10:20am
Replies by: sandys, UBContributor, Anonymous

Hi,

I was diagnosed with stage 1a Melanoma in December and had a WLE.  It was located on my upper right back. Tonight I noticed a lump on my left temple, just by my hairline. It is just under my skin, about the size of an m&m. Could this be a swollen lymph node or in any way related to my melanoma?  I am not sure if I am being ridiculous  or reasonable to worry about this.

Would be so grateful for any replies!!

 

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Finished my 4th Opdivo/yervoy infusion on Thursday.  I do have intransit lesions (about 12-15) on my right foot close to my primary that have yet to shrink.  My doc order scans (PET or CT) depending on insurance approval and made an appointment in 3 weeks to do Opdivo full dose only every 2 weeks.  My question is these pesky lesions (blister looking things).  Any one else have them?  I have read about T-Vec and my doctor mentioned it but he wants to see improvement in the lymph nodes that are effected with melanoma right now and then maybe the lesions are just slow to respond and then we talk about the injections.

I have read only 10% of melanoma patients get intransit lesions.  Just seems like the infusion is like a fertilizer and they just keep popping up.  The doc also said I might have blockage in my lymph nodes that is keeping them from cleaning/clearing out.  Whatever that means.

Donna

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/25/2017 - 10:11am
Replies by: sandys, Pearl1578, Kim K, Treadlightly, JustJaren, Anonymous

Good Afternoon, I feel truly blessed to have found this site. I was newly diagnosed with Melanoma after a long 10 day waiting period on the biospy of a mole on my back. I am scared to death and cried for days. They also felt a spot on my thyroid and awaiting the US hoping they are not connected.

 Now that the crying is over I need to deal with getting through this. I have a wonderful surgical oncologist that i have complete trust in but the unknown is scary. I need to get my labs and US done before they will schedule surgery for removal and staging. They are also talking about possible grafting.

I have questions about staging...several people that I know that were diagnosed years ago never got staged? Treatment seems to be different for some? I understand that staging determines the treatment following the surgery, please advise me if I am understanding this correctly.

I also live in the Irvine area and would liketo find a local support group for Melanoma.

Thank you for you advise and help in advance!

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slh4448's picture
Replies 11
Last reply 3/25/2017 - 9:56am

Hello All,

I just wanted to throw out an ongoing issue to the group here. I had my second ipi 10mg dose back on 9/20. Went pretty well. About a week later w/o 9/26th to now, I have been battling a lot of nausea and episodic diarrhea. Quite a bit of diarrhea too. And not everyday, but there are some days that I am having unbelievable amounts of gas and very raunchy at that. I am in daily communication with my providers. On the 29th they brought me in for iv fluids, worried about my dehydration. On the 30th, I started on 80mg of predisone daily and 30mg of a ppi daily as well. Taking imodium but not more than label. Also taking zofram for the nausea per label. In the last week I went in to my clinic five days apart for blood work and everthing is basically good. WBC a little high, but the doctors believe that is due to my treatments more than anything else. They discussed with me about a possible gi infection, specifically c. diff so I was able to provide a stool sample on Friday and I should hear about those results tomorrow sometime. They also discussed sending me in for a colonoscopy.

I'm eating a very bland diet, don't drink alcohol and limit my caffeine to one 12oz can in the morning when I wake up, that's it. Drinking water, gatorade low in sugar, etc. My providers are very concerned about an infection...something appears to be going on???

My third treatment was scheduled for this coming Thursday, the 13th but they have cancelled that as we need to figure my intestines out first. Wondering about colitis??

So I was curious if anyone has any personal experience or knows of someone that may have or possibly going through this like I am and if so, would you you be comfortable in sharing that with me??

Anyway, hope everybody is as good as they can be!!!!!!!!!!

Stacy

 


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