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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J.bun's picture
Replies 12
Last reply 2/22/2017 - 5:10pm

I’ve been eager for my first post in this community, and felt like I needed to find the “right” way for myself.  Since my initial IB diagnosis in April 2015, I’ve been an avid reader/lurker on this board.  Like so many of the “early stagers,” I felt shocked – then relief it was only 1B – and concern for the future recurrence.  Unfortunately, these fears were recognized when I noticed a lump in my groin at the site of my sentinel node biopsy this past Thanksgiving.  Within one week I had an excision and PET CT scan - 2 nodes and skin involved.  I go to the Inova Melanoma specialty clinic in Northern Virginia - right outside DC.

Now, less than 100 days since this diagnosis, I have been on 3 treatments (6 total drugs - Ipi/Nivo; Zelboraf/Cotellic; Tafinlar/Mekinist); prednisone; and encountered an 8-night hospital stay (severe allergic reaction to Zelboraf - known as DRESS- extremely rare and potentially fatal).  Most importantly, my PET CT scan this week is showing that the drugs are working! 

I am writing all this to thank all you contributors/active posters - and hope to share my experiences and support each other too.  I wouldn't have been able to understand everything I went through and the questions to ask had it not  been for this board.   

I am a 33 years old, I am not writing this to raise fears - but I believe information can be empowering, and facing reality is far more important than to "keep your head in the sand."  We all want the same thing, and share the same goals.

- J.

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snow white's picture
Replies 35
Last reply 2/22/2017 - 4:55pm

It is with a very heavy heart that I have to relay this news.  Our dear friend and warrior Paul passed away on Friday 2/17/17.  I have been in touch with his daughter and she asked me to relay this news.  I am so very sad about this.  He gave me and my family so much hope, he was fighting so hard just to get back to LA to start the trial.  I had been keeping in touch with him via text after I met him in person at The Angeles Clinic. Such a great guy and will surely be missed, especially him humor!  His daughter has asked me to let all know that his services will be on Saturday at Pine Lake covenant church in Sammamish.  If you need more details I am happy to text her.  I know his family was a great support to him and will miss him dearly.  I will miss his posts on here so much.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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debwray's picture
Replies 13
Last reply 2/22/2017 - 3:40pm

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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ryanbkyle's picture
Replies 8
Last reply 2/22/2017 - 3:39pm

I am a generally healthy 54 year old woman who has been diagnosed with Stage 3A melanoma.  I had the wide excision and the sentinel lobe dissection. One out of three lymph nodes showed a microscopic trace of cancer.  I now have to decide on treatment, and would like advice from those that have gone through this.  My gut is telling me to take one day at a time and see what happens and be monitored by my oncologist -- not to do a CLND or the Interferon and IPI treaments.  Any advice would be appreciated?  Thank you!

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Anonymous's picture
Replies 2
Last reply 2/22/2017 - 2:52pm
Replies by: J.bun, UBContributor

I've been on taf/Mek for 17 months with amazing results until this last month I had 4 new brain mets. It seems to be working in my body still but not my brain. I also just started ipi/nivo combo and my doctor wants me to continue taking the BRAF meds for at least another month. I'm a little nervous about toxicity with all of this in my system. Does anyone have any experience with these taken together? Or know of any articles or studies combining all 4? Thanks for the help!

 

sara 

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rabbits68's picture
Replies 4
Last reply 2/22/2017 - 2:23pm
Replies by: Bubbles, MaPerny, Mark_DC, Rocco

I have progressed on Keytruda and my doctor wants to start the chemo drug Abraxene. I am not sure if this is the next step I should take. At this point I am considering going to either MD Anderson or Sloan Kettering. Does anyone know how I go about getting a consult or having someone look at my records. Short history: failed Yervoy, failed Mek combo and now failed Keytruda. Does chemo seem like the next logical step? Any advise is appreciated. I am feeling unsure and scared. Thank you

LisaG

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mdoh's picture
Replies 2
Last reply 2/22/2017 - 12:33pm
Replies by: UBContributor, youngann

Hello fellow warriors- I was diagnosed with stage 2a melanoma in July 2015. No issues since. Have been diagnosed with gallstones after a couple of acute attacks. Question is should I be concerned about this gallbladder removal surgery lowering my immune system? Should I let my oncologist know? 

Thanks and keep fighting!

mary

 

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Shaneswife's picture
Replies 3
Last reply 2/22/2017 - 11:31am

Well we got Shane'seen results today and it was very much a big old mixed bag of news.

Lungs: almost a complete cr. 1 lesion 3mm on right lobe is all that's left of the 15 between both lungs.

Liver: still innumerable tumors however the biggest 3 have shrunk each by 25%.

Brain: not great news here. Progression noted on many of the bigger tumors. Still has innumerable tumors even after wbrt and 6 weeks of braf/mek.

New metastases found in his vertebrae at t7, t8, and l4.

So he's progressing in brain and variable response in the body.

Doctor has no idea what to do next so sending us to Princess Margaret Hospital to a melanoma specialist. Hoping for an appointment next week. For now maintaining the braf/mek and dex and we go back to waiting again.

Janis

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Coneflowers's picture
Replies 6
Last reply 2/22/2017 - 10:33am
Replies by: Coneflowers, Ed Williams, AshleyS, Anonymous

My daughter who is a child has now been on Opdivo for over a year. She has been stable for almost a year!! Which is so great! Just wondering if there is anyone out there that has moved on from stable to NED? I have read a few stories, and I know everyone is different... I of course also worry that it will stop working. Her case is extremely rare and no one really knows what to expect.

Thanks!

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Melodygrace's picture
Replies 2
Last reply 2/21/2017 - 8:08pm

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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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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Dreaf01's picture
Replies 7
Last reply 2/21/2017 - 4:49pm
Replies by: Anonymous, cancersnewnormal, zfishberg, Nemesis, Janner

Just want to know why scans are not recommended for stage 1b/2A. My anxiety is getting the best of me and am wondering if I should be requesting them. I had stage 1b melanoma removed from my right upper thigh. Negative margins and negative nodes.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/21/2017 - 4:28pm
Replies by: Anonymous, BillMFl, jennunicorn, Fen

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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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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