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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Replies by: Scooby123

Hi,

Have had 3 doses of ipi nivo over 15 weeks, delays due raised AST ALT so have had one 6 week drug hol and dose 4 should have been yesterday, but back on 50mg pred as numbers raised again in spite of 10mg pred daily after dose 3.

12 week scan showed liver progression..but that would be a compare to reference scan 5 weeks before treatment start and after 2 doses plus 6 week drug holiday BRAF wild type and in the uk.

Mood music from docs is that they think true progression rather than psuedo progression, and took a blood to test if eligible for immunocore trial https://clinicaltrials.gov/ct2/show/NCT02535078?term=immunocore&rank=3

Anyone out there with experience of "late " response to combo with diffuse liver mets ?

Feeling a bit punch drunk as the bad news keeps on coming- anyone been transitioned to nivo solo with grade 2 liver probs with suspected progression ?

Any experience / info good or bad welcome. Was sort of hopeful for a response with mild vitiligo and with  some superficial skin lesions fading away. Back in the waiting game now as I think next scan will be used to determine next steps

The white knuckle ride continues......

Wishing you all well

Deb

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Anonymous's picture
Anonymous
Replies 0

I'm waiting for my biospy appointment currently. I've sever depression from this as I'm assuming the worst. I just know I have nodular melanoma (black dry raised mole) it's 2mm in diameter. I don't know how to cope with this anxiety, especially when looking to my little girl tears can happen easily also I'm getting strange headaches which let me think that it's now in my brain. How i can prepare my self for the diagnosis? Any advice would be appreciated.Thanks

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Hi all,

Has anyone here ever had a melanoma that was first misdiagnosed as a dysplastic nevus?  I had a dysplastic nevus removed last year.  It had to be sent in to UCSF for a second opinion because the first results were inconslusive.  This, combined with the fact that a dysplastic nevus looks similar to melanoma, has me wondering if it actually could misdiagnosed.  

I know someone who had a mole removed six years ago, results came back as a spitz nevus.  They got a surgical excision and then got on with their life.  However, six years later, this person discovered a lump under their arm.  It turned out the spitz nevus diagnosis was wrong and it had been melanoma the whole time.  

This made we wonder if this happens with dysplastic nevus moles as well. I have a family history of melanoma, so I am just a little concerned.  I did have the mole surgically excised when we found out it was dysplastic. 

Just curious to hear if anyone has any personal experience with this.

Thank you!

 

 

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JoshF's picture
Replies 14
Last reply 2/21/2017 - 7:32am

Hi Everyone! It's been awhile and I've been staying in touch with Paul but figured it's time to update. So I did TIL beginning in February. Ended up with 14 billion cells which the PI for trial said was reasonable. I guess the trick to TIL is having the "right mix" of cells. My TIL cells had good viability so hopefully they can get some work done. I definitely need it. I'm scared, anxious...all the above but doing best to live life. I'm not thrilled about having to go back to Houston every 3 weeks for keytruda. Since I failed Nivo, didn't think it was good option but it's part of trial and doc says new immune system can provide different results. I'm praying that's the case. Outside of that I'm trying to get strength back. TIL does take it out of you for sure.

On another note, I lost a friend while in hospital. He was doing bio-chemo and his body gave out. It's hard part about this disease, you meet people and then they're suddenly gone. I'm heartbroken....he would've been 40 yesterday. I guess it's why I've been staying away from this forum. Too much suffering. Not to mention I haven't heard from Paul in 2 days. 

Anyway, I'm hopeful and not ready to leave my kids so I'll fight on but I'm not going to lie, I'm wiped out. Cmon TCELLS!!!!

Josh

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

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Replies by: jennunicorn, Mark_DC

Hi,

Can anyone explain the Ipi infusion process and length of time for the infusion?

Does Ipi get infused through 1 catheter site or multiple?

Does the infusion take a few minutes or more than an hour, or multiple hours?

Anything else about the infusion which you recommend(e.g. Bringing music and headphones, bringing a book, eating food beforehand or fasting beforehand)?

 

thank you

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stevenallenschwartz's picture
Replies 2
Last reply 2/21/2017 - 3:01am
Replies by: Patrisa, Mark_DC

Had my 4th infusion today. Almost postponed due to higher liver enzymes than normal. So far no reaction. Scheduled for my 5th infusion in 3 weeks than the petscan to determine the efficacy. Taming my fear by staying active.

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/20/2017 - 7:34pm
Replies by: Anonymous, jennunicorn

Hello All,

I was recently diagnosed Stage 1a at a depth of 0.23mm about two months ago. I am still dealing with the stress and anxiety from this diagnosis, but I want to help beat this thing for all of you stage 3 and 4's out there. I feel so bad when I read all of your stories and what you are going through it breaks my heart. I realize I am in a very good spot with my prognosis, but am still scared. Anyhow, I wanted to start donating to research to help cure this dreadful disease. I have been on so many websites and I am just not sure which to donate to. Where do you guys think the majority of our money should be going? I wanted to invest in breakthrough treatments and such that have been made in melanoma, not necessarily a site that spends all their money on education. I think research is where I want to donate my money to and wanted to hear your guys thoughts on what you think is the best place to donate. Let me know your thoughts, thank you. 

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/20/2017 - 7:06pm
Replies by: Anonymous, skousal, MichelleRHG, debwray, momof4boys

Hello, 

Does anyone have any advise on how to unclog the JP drain from a complete lymphnode dissection. I have stripped the drain hundreds of times with no luck, I can see the tissue clogging the drain. The fluid is running down my leg.. please any help. 

 

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Anonymous's picture
Replies 1
Last reply 2/20/2017 - 5:50pm
Replies by: 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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Anonymous's picture
Anonymous
Replies 6
Last reply 2/21/2017 - 3:01am
Replies by: Anonymous, casagrayson

Could you have nodular melanoma without recurrence? I think I'll be diagnosed soon and I'm so scared, it's a jet black raised mole which appeared during my pregnancy:(
I'm in a country which this disease is extremely rare and none can understand me, I feel like I can't find support at all
Even when I mentioned this to doctors they didn't care and feels I'm just paranoid:/

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Judy Steven's wife's picture
Replies 7
Last reply 2/20/2017 - 11:35pm

HI everyone, my husband had his immunotherapy Feb 8, on steroids again Feb 10 because of brain edema, and now we're just home again and waiting for things to get better......which is not happening. Steven is very fatigued and got mouth sores, very painful. Didn't drink enough and ended up in  ER for dehyration. Gets upset with me when I want him to drink more, which is also frustrating. He's feeling miserable because of fatigue and this mouth pain. Any ideas on what to do for mouth sores? We got a miracle mouth wash from the doctor (w/ lidocaine), but is hardly numbs the pain. I also made a saline solution, with some tea tree oil to use a few times a day, but sores are stil there, and more are coming. Makes eating almost impossible (I blend soups). How do you keep your spouse/friend/family member to eat and drink when they feel so miserable?

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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Aloha14's picture
Replies 4
Last reply 2/20/2017 - 11:45pm
Replies by: Aloha14, Anonymous, debwray

I'm on vacation and got the chills and then noticed the largest seroma on my leg was red. I went to the ER and they did an ultrasound and said there's fluid in there, and the doctor thinks I have cellulitis. Gave me IV antibiotics and then a prescription for pills. I wore the compression pants on the plane and everything seemed to be ok until last night. I have a call into my surgeon. I wonder how I could get an infection when the skin isn't open?

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/20/2017 - 11:50am
Replies by: jennunicorn, MichelleRHG, Anonymous, Aloha14

I just wondered if anyone knew of the typical course of spread via lymph nodes in groin. I've been told that typically there is spread to groin nodes (surface nodes) and it then travels to 'deeper' pelvic nodes. Is this the case? Anyone have spread to pelvic nodes with only very small amount to one groin one and/or spread to pelvic without any spread to groin? 

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sgreen1920's picture
Replies 1
Last reply 2/20/2017 - 5:36pm
Replies by: BillMFl

I observed a mole on the sole of my foot a few months back. Something kept bothering about the location (I  have WebMD to thank). Then I noticed a discolorization on my big toe. I had injured my big toe from walking. Either way, my thoughts kept circling back to the bottom of my foot. My big toe finaly gave me bravery to go to the dermatologist.

Things went so quickly....

I got to the dermontologist office, she came in. She wasn't too concerned about my big toe. She zoned in on my foot. She noticed there wasn't just one mole but two on the bottom of my feet. A faint one but it was still there. Before I knew it, she was talking about a shaved biopsy. After it was done, she said the results would be in in 7 days. Holy! pain on the foot. Anyone else experience such a great discomfort? is it the location or is this normal?

I wanted to reach out to you all to see what you've done to curve the anxiety feeling? I've been stuck in bed because the location of the biopsy, and I have this undeniable amount of anxiety. I've attached some picture

 

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Michelle820's picture
Replies 3
Last reply 2/20/2017 - 7:40pm
Replies by: Michelle820, BillMFl, Janner

Hello all, just curious if anyone owns a dermoscope? Would you think it helps during exams? I have been told by my specialist, that I have a lot of "funny looking moles". Ughhh. He insists that my husband help me with my monthly skin checks-which he does-however, I don't think he gets the importance. I'm thinking of purchasing my own dermoscope. 

If you own one, any specific brand that's recommended? I understand they can be pricey but if it helps calm my nerves it's worth it in my opinion. Also, I have seen them as an attachment to an iPhone. ???

thank you for your input:)

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