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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jennunicorn's picture
Replies 1
Last reply 2/19/2017 - 12:38am
Replies by: corgimom

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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From melanomaforum.org:  The book written in 2015 is available free to all patients and caregivers.  Please send an email to: contact@melanomainternational.org   Limited quantity available.  We also would appreciate any donations to cover labor and postage.  It is the number one book on Amazon.com on melanoma.

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J.bun's picture
Replies 8
Last reply 2/18/2017 - 10:57pm

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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Anonymous's picture
Anonymous
Replies 3
Last reply 2/18/2017 - 7:51am
Replies by: Ed Williams, Bubbles

Was offered a trial involving TVEC combined with an immunotherapy.  I don't know much about TVEC.  And that side of the trial is blinded, so not sure it's worth it anyway.  I can also do the immunotherapy drug without TVEC, so it's not an all-in type situation.  Has anyone had early success with it?  Or anything similar?  I'm really not sure what to do.

Thanks!

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Replies by: Fen, 45_dps, Anonymous

8 days since complete lymph node dissection of the left side of my neck.

Normal scar and muscle tightness (and no sensation in my left ear, cheek, neck, and shoulder).

My speech is having a strong lisp.

It is very difficult to move food around in my mouth (mostly moving food from left to right is the challenge, and if it gets stuck at the top of my mouth then I can only get it with my finger). 

When I try to smile, and/or lift the sides of my mouth up, only my right side goes up (left side stays horizontal)

Has anyone experienced these? Could you let me know how you overcame them?

Any recommendations regarding medications, vitamins, or herbal medicines which can help nerves to heal?

My surgeon is getting me help from a speech therapist, so I've got that going on. But I'm definitely interested in the experience of others in this regard.

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AvaL's picture
Replies 2
Last reply 2/17/2017 - 3:17pm
Replies by: AvaL, jennunicorn

Hi, I know my hubby prob needs to get this looked at but I just wondered if others had had an itchy scar some months after the WLE. Hubby stage 3a and had WLE in November. He's not felt much around the area apart from yesterday when it became  itchy suddenly. I can't see anything at though around it, no colouration, no new bump etc. Anyone else had similar? God I hate this! X

 

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Shelby - MRF's picture
Replies 1
Last reply 2/16/2017 - 8:49pm
Replies by: Charlie S

Dear MPIP Community:

A media outlet is seeking individuals for a potential interview opportunity ASAP. If you are a former tanner who used a tanning bed in your own home and would like to share your story, please email media@melanoma.org. Thank you!

Shelby - MRF 

 

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Dreaf01's picture
Replies 3
Last reply 2/18/2017 - 9:26am

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
Replies 5
Last reply 2/17/2017 - 6:18pm
Replies by: SOLE, debwray, Janner

All of my lymph nodes which tested positive are in the same "field / mat" under my arm (primary was on my chest).

Does the term metastatic come from the fact I may have micro-metastize particles which can travel throughout my blood and lymph system?

I'm having a hard time distinguishing between stage 3 and 4, but it seems like the difference is in where the melanoma is found and not necessarily a difference in prognosis.

I can see the difference between stage 2 and 3 being prognostically significant because at stage 2 the melanoma has only been "found" in the skin. However, just because it hasn't been found in other places doesn't mean the micro particles haven't started spreading to anywhere else.

ok, I started out with a question and ended up scaring myself.

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Shaneswife's picture
Replies 4
Last reply 2/16/2017 - 8:41pm

Sigh. You ever notice that all we do with cancer as a care giver is wait. Wait for appointments. Wait for tests. And wait for results and then repeat over and over. I'm so darned worried about Shane's results. We get them Tuesday and my gut tells me his liver and bones and lungs will be better, but not in the brain. The brain will show progression. And if you can't control the cranial disease then what. I suspect he's in for another round of whole brain radiation before they switch him to immunotherapy. I don't even know if the combo is approved in Canada doublet. Anyone know for sure? I'm talking ipi/nivo. They will have to take him off the braf/mek if there is progressiono in the brain. He's highly symptomatic with neurological symptoms when not on 12mg of Decadron a day. Sorry for my vent. I'm just so tired of waiting.

Janis

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Charlie S's picture
Replies 5
Last reply 2/16/2017 - 1:37pm

Somebody, somwhere once said or wrote something that stuck with me about the adversity when your inner mettle is tested with a private storm  and how to deal with it:

Have a wishbone

Have a backbone

Have a funny bone

It sooooooooooooooo applies here I think as we all deal with the obvious.

Good tools methinks.

Just thinking out loud.

 

Cheers,

Charlie S

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Replies by: Bubbles, Spl25, Ed Williams

I know there are a few clinical trials looking into this, but I'm looking for data (even preclinical) regarding whether Melanoma cells are *more* or *less* likely to be recognized by cytotoxic immune cells after BRAF therapy. Has anybody heard of a CR or durable response to PD-1 *after* BRAF inhibition? I've certainly heard the stories of disease coming back "angry" after BRAF therapy (in the minority of patients, of course). 

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Anonymous's picture
Replies 3
Last reply 2/17/2017 - 6:34pm
Replies by: J.bun, Anonymous

Has anyone else experienced only fatigue & tiredness while on MEK/TAF?

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Anonymous's picture
Anonymous
Replies 8
Last reply 2/17/2017 - 11:00pm

I've recently had a recurrence of melanoma in three nodes (groin, pelvis, knee).  Other than the three nodes, everything else looks fine.  I had interferon in 2007, and had previously been in remission since 2012.  All of my previous melanomas have come on the same side of my body, from my groin down.  

I'm trying to decide what course of action to take next.  I'm being offered pembro, but want to know if this is the best, next step.  Doctors are confident it can be effective with the least side effects.  I'm BRAF positive as well.  I would appreciate any thoughts or advice.  I know there isn't any perfect option, but I'm asking what would make most sense for this stage?  Thanks, and best to all of you.  

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