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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JoshF's picture
Replies 22
Last reply 2/22/2017 - 5:18pm

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: J.bun, 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 4
Last reply 2/22/2017 - 5:49pm

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 3
Last reply 2/21/2017 - 2:07pm
Replies by: geriakt, 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 4
Last reply 2/21/2017 - 2:12pm
Replies by: BillMFl, Michelle820, 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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Scooby123's picture
Replies 4
Last reply 2/20/2017 - 1:08pm

Hi All,

When my mel went to my liver, lungs, brain I was told it spread by blood not lymph nodes, but in the 2 years of checks before been told it had spread I did have a wied  feeling in my groin area . I did see my GP at the time but said my nodes was up but felt it was nothing to do with the cancer due to not long after surgery to remove mole. I did not get other test after surgery only check moles and nodes on visits. I have always woundered if it could have been in my groin lymph nodes before spreading but I will never know now. 

My question is my mole was on my bottom back near hip on the right side latley I have been having the feeling I had in my nodes years before spreading. Has anyone had groin lymph node involment and if so do you get lumps or just looks swallow. I just feel a aching sensation in this area. Will have it checked going to call nurse tomorrow but just wanted anyone's experience in groin with lymph nodes with cancer in that area.

scooby X

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jennunicorn's picture
Replies 6
Last reply 2/21/2017 - 11:34am

Wondering if anyone else has had their blood tests show anemia but when tested for iron deficiency found you're not iron deficient?

I dealt with iron deficiency my whole childhood, had to take the grossest medicine for many years. So, when my onc said anemia, I assumed I was back to being iron deficient. But, tests show I am all good with iron. My onc said she will test for other things next time I am there, in 2 weeks. Just wondering if this is caused by the treatment and if anyone else has experienced something similar?

 

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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newmanmark's picture
Replies 3
Last reply 2/18/2017 - 9:39pm
Replies by: Mark_DC, newmanmark, debwray

Hello,

I have completed 3 rounds of the IPi/Nivo combo and it resulted in hypophysitits.  I have been on high doses of prednisone for the past 2 weeks.  Started at 80mg per day and ween down 10mg every 5 days.  I have become agitated, irritable and I don't feel myself.  My body aches, my jaw feels tight and I have an overall exhausted/tired feeling.  It doesn't go away even after a full nights sleep.  Not sure how much longer I can tolerate it.  

Has anyone else experienced this with high dose prednisione?

Thanks
Mark

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