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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RaquelP's picture
Replies 4
Last reply 3/15/2017 - 6:22am

Has anyone heard from Kerri? Hoping Jake is doing well!

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Aaron's picture
Replies 11
Last reply 2/24/2017 - 10:47pm

Ok.  So before I go a little further I will give you a shortened version of the whole story, like I always do, for those who are unfamiliar or have forgotten.  

NIVO/IPI combo

1st scan everything reduced by 1/2  Roller coaster high

Pituitary enlargement and vitiligo develops and  put on Prednisone complete only 3 of 4 Ipi and continue on Nivo  Roller Coaster high because I'm thinking I am responding but also low because I want the 4th dose and questioning what my life will look like now on all these new meds to replace pituitary function.

2nd scan no growth no shrinkage; stable  Roller coaster low; questioning if my good responses were over.

Tuesday I had my third scan.  I originally had 20+ tumors and now only have two measurable tumors left and they are shrinking!  Thank God for modern medicine and for being with me and my family through this.  I know it isn't over and that NED is not "cure" but I can't help but feel I am going to beat this.  ROLLER COASTER HIGH!

 

Wishing the best and for all as always.

Aaron

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Anonymous's picture
Anonymous
Replies 13
Last reply 3/2/2017 - 1:04am

Is it really caused by Sun exposure? I don't think so. There are many many people enjoying each day in their life soaking up the sun, tanning, not applying sunscreen and never get melanoma, while others never do these stuff and it happens to them in a young age. I just don't know what really causes this disease! It's unfair.I hate it.
Sorry but I'm very disappointed and just want to say it.

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BarbaraF's picture
Replies 2
Last reply 3/24/2017 - 7:38pm
Replies by: BarbaraF, jennunicorn

Patient is Stage III C with melanomas on the face, two recurrencies, first involved a skin graft from thigh. Second was within a month and near original site.

We are in the process of choosing therapy - clinical trial or oncologist. Meanwhile two suspicious bumps have appeared --  one that does not break the skin near the original area and another on the leg. Patient wants to wait until the next regular appointment - 2 or 3 weeks from now. I think he ought to go PRONTO. Opinion? Monthly? 

 

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Dreaf01's picture
Replies 5
Last reply 2/23/2017 - 5:55pm

I pray for everyone on here everyday. I need some opinions please. I had my wle and 2 nodes removed from my groin on 12/29. The nodes were negative (thank God).Right after surgery a golf ball hard lump developed right next to the groin incision and gradually started decreasing. I had an allergic reaction to something (unknown) last weekend, as a result I was put on Prednisone. The prednisone for the most part made the lump dissolve or decrease quite a bit. Im not sure if the lump was a seroma or some kind of post op issue, but my surgeon saw it at my post op apt and didnt seem concerned. Now all I feel is a small hard lump that tends to decrease a little when massaged. It is not painful. Im just concerned because Im not sure if its that same post op lump or a lymph node as it has been almost 2 months since surgery. Has anyone had anything similar? I have an appointment with the surgeon next week, but a little nervous. Thanks!

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Carybaum's picture
Replies 5
Last reply 3/19/2017 - 4:19pm

Hello, fellow warriors. I am an American living in Hong Kong. I was diagnosed Stage IV in June, 2016 and have been on Nivo since July, 2016. It looks like we'll be required to move back to the US due to my job loss here. Is there anyone participating in the ACA Individual Marketplace insurance out there that is being treated with immunotherapy? What difficulties in coverage have you experienced? So far it's a bit of a nightmare trying to match network providers with plans on the Marketplace website. Telephone calls with Marketplace representatives have proven fruitless. Any info would be greatly appreciated. Keep fighting!

Regards,

Cary

 

 


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ryanbkyle's picture
Replies 18
Last reply 2/27/2017 - 11:39am

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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mdoh's picture
Replies 5
Last reply 2/24/2017 - 2:33pm

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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rabbits68's picture
Replies 12
Last reply 3/1/2017 - 4:48pm

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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Shaneswife's picture
Replies 5
Last reply 2/23/2017 - 2:42pm

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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Anonymous's picture
Replies 4
Last reply 2/23/2017 - 12:52pm

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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snow white's picture
Replies 45
Last reply 3/3/2017 - 9:31pm

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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Coneflowers's picture
Replies 8
Last reply 2/24/2017 - 3:47am
Replies by: Coneflowers, Mat, 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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debwray's picture
Replies 15
Last reply 2/23/2017 - 7:28pm

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 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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