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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mkirkland's picture
Replies 6
Last reply 4/1/2016 - 9:50am

Does anyone know how long this drug stays in your system once you have finished treatment? 

Thanks! 

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Lin P's picture
Replies 2
Last reply 3/29/2016 - 3:40am
Replies by: Kim K, Scooby123

My mom has been on Zelboraf for about 2weeks and started feeling pain in the tumor on her neck(lymph node).

Does anyone know if tumor pain also can be a side effect of zelboraf?

She also had a radiation therapy in that area for your information.

Thank you.

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jennunicorn's picture
Replies 11
Last reply 3/28/2016 - 10:11pm

Ok, so I have had VERY loud ringing in my ears for almost 2 months now. I've dealth with tinnitus in the past but never to this extent. I noticed the ringing start after a cold I had at the end of January, so I figure it is from that. Had my onc check my ears when I saw her a few weeks ago, she said they looked good, no infection. 

Of course one thing that comes up when you search ringing in ears for causation is brain tumor. I'm sure that's not the case for me, but with the whole melanoma thing, it makes me have to think about it a tiny bit. Has anyone had any experience with ringing in their ears.. like really loud, can't fall asleep at night, hard to hear, type ringing? If so, what have you done to lessen it, if that is possible? And, has anyone had experience with a brain met causing ringing?

I've been taking Lipo-Flavonoid pills since I've used it in the past to stop tinnitus and it worked before. It is doing absolutely nothing now. It is a mix of different vitamins that is suppose to help whatever causes tinnitus. 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Replies by: jennunicorn, Momofjake, Anonymous, Janner, Kare83, DZnDef

Hi,

I was reading some older posts on the board about shave vs. punch biopsies.

I found this article that warns AGAINST punch biopsies.

I am guessing that means that an excisional biopsy is best.  At least in the case of a suspected melanoma.

So frustrating to reach conflicting literature.  A prior article I read mentioned that punch biopsy was the way to go.  But a punch biopsy makes me wonder about seeding?  Couldn't the punch force cells down further than they already are, since the depth can only truly be known with WLE?

 

Seems like one could go to 10 different derms and end up with 10 different recommendations!

So frustrating!!

p.s.  I am also learning about nodular melanoma since that is what my new mole resembles.

 

The link below will take you to the full article, as I just posted the abstract.

http://escholarship.org/uc/item/4vb8x54s

 

Punch biopsies of melanoma: A diagnostic peril
Giovanni D Lorusso MD, Deba P Sarma MD, and Syeda F Sarwar MD
Dermatology Online Journal 11 (1): 7 

Department of Pathology, Veterans Affairs Medical Center and Louisiana State University Health Sciences Center. glorus@lsuhsc.edu

Abstract

Excisional or incisional biopsies of melanoma are used to determine depth of tumor invasion and to plan subsequent treatment. Accurate determination of depth of melanoma invasion is critical for treatment decisions and prognosis. Incisional or punch biopsies can be perilous for histopathologic determination of invasion, and both over- and underestimation of invasion can occur when using incisional methods. Likewise, histologic factors can lead to over- and underestimation of invasion. Prognosis and treatment of melanoma are primarily determined by depth of tumor invasion. We discuss several scenarios that can lead to over- and underestimation of depth of invasion in incisional biopsy specimens. We therefore discourage incisional or punch biopsies of suspected melanoma and recommend that depth of invasion not be reported on these types of specimens.

anita1976

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Marianne quinn's picture
Replies 5
Last reply 3/28/2016 - 7:06pm

My husband just had another great CAT scan. Still NED! What is so wonderful is that 2 years ago, he was diagnosed with a small metastasis to his liver. He was in the interferon vs. ipi trial for stage 3C. He had 4 infusions of 10 mg ipi and had tolerated it reasonably well. He was removed from the clinical trial ( he was supposed to get 4 maintenence doses)., basically a clinical "failure". He then had microwave ablation surgery and then became NED. 2 years ago, we thought  he only had months. Now we know he is a "durable responder". We are lucky.

What bothers me a bit, is when the study results come out, it will not reflect that the Yervoy worked. Also, it was a bit disappointing that after being followed so closely during the trial and giving at least 50 vials of blood, that he was dropped like a hot potato from the support from the clinical trial researchers. I think there is valueable information to be gleaned from him. It is really a shame for other melanoma patients. One of the reasons he joined a clinical trial was to help others.

Keep up the good fight. There is hope.

 

 

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Tamlin's picture
Replies 4
Last reply 3/29/2016 - 11:56am
Replies by: jennunicorn, Tamlin

Hi

just a quick update on how I got on at derm appointment. He examined the lump in my groin which I e had for 2 wks now and said he didn't think it was a lymph node, but given my history, he would arrange an ultrasound scan. I had my scan yesterday and have been told it is infact an enlarged lymph node, and that my consultant might want to do more tests.  I assume he means a biopsy. Good news is he couldn't find any more nodes in my groin

Should I insist on a biopsy if consultant suggest 'watch and see'.  Should I also insist on an open biopsy as I have read that fine needle biopsy isn't accurate (doesn't always detect cancer present )

 

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nlac26's picture
Replies 4
Last reply 3/28/2016 - 5:38pm
Replies by: nlac26, BrianP, Ed Williams

I started my clinical trial on March 3rd and what a busy day that was! After all the of the pre-testing they put you through, you'd think just taking the drugs would be the easy part. Not really!  My first day of the trial they put in 2 Iv's, one for the nivo infusion and one to pull blood from periodically for 8 hours. It was a long day at the hosptial to say the least. The infusion itself wasn't that bad. It lasted 30 minutes and then I was moved to a research treatment room for the remainder of the day. I take two pills a day of the IDO inhibitor as well. Sometimes I feel they make me a little wonky but as the month has progressed, those feeling have started to fade out. I had my second infusion March 17th. That one hit me a little harder and I was super fatigued and drowzy by the time my husband got me home. I slept the rest of the day, into the night and woke up Friday much better. I did the four rounds of Yervoy last fall and never felt one side effect from the treatment. I expected much the same from this treatment but it seems to be a little stronger. I met with the Dr yesterday and after an exam, we both agreed the tumor in my left armpit is shrinking! Of course, only a scan can prove that but when you've felt this huge lump in your arm for months and all of sudden it's not as noticeable, I have to believe these drugs are working! The little lumps lining my left shoulder blade are also gone! When you're constantly stuck with needles and ran through machines, believing in good news helps the decisions you've made in treatment worth it. We're very exicited and keep praying for the best possible result..NED! Next Thursday will be my 3rd infusion with dual iv's for more PK' blood studies. If I know it's working I can handle it a lot better!  I'll have my 8 week scan in the beginning of May to verify what we're all hoping for... Wish us luck as we keep fighting the fight! Niki

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Gene_S's picture
Replies 1
Last reply 3/28/2016 - 3:04pm
Replies by: Coneflowers

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Momofjake's picture
Replies 18
Last reply 3/28/2016 - 3:53pm

Hi my friends!

i just wrote a post that somehow didn't show up. Dang. 

K. Jakes scans showed more growth. Now in liver, lungs, spine, bones, muscles, most nodes, aortic arch node pressing on his aorta, stomach, kidney, rectum, neck....ya. Everywhere. 

They have cancelled his keytruda for Monday and have given 2 real options. 

1. Mek/Taflinar combo

2. Study with ipi/Taflinar combo

do these sound like reasonable choices? Which would you choose? I will be doing my best homework to help educate Jake. He is debating if he even wants any treatments and is 18 making the biggest decisions there are. It's so hard! But he does get to choose and I told him I will support whatever he decides! No one can ever judge how another navigates this nightmare. Jake feels great and has all the faith in the world! 

I really love you here and I know the heartache. Hope you are all being blessed with a normal day. Aren't they great?:) 

Warm regards,

kerri--momofjake

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britt1991's picture
Replies 4
Last reply 3/26/2016 - 1:09am

Hi,I am 24 and had two moles removed last year. One was severely atypical,and the other moderately atypical. My doctor recommended I see a dermatologist once a year,so I saw one less then a year ago. Maybe 8-10 months ago. I went to my doctor a little over a month ago for something unrelated,and figured I'd have her check out my moles while I was there. She wanted to remove one I've had since birth. I had this done on Monday and am very anxiously waiting for my results. There's no way my dermatologist didn't see it. Is it less likely to be melanoma,since it was looked at somewhat recently? Or possibly at least not advanced if it is? Thanks for any replies. I have been really stressed lately. 

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Dick, TJ, and many others will be at the 14th annual Safe from the Sun walk and run and FREE screening by top derms.  Go to:  www.safefromthesun.org and join thousands of melanoma patients and families to celebrate life!

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CCJ's picture
Replies 2
Last reply 3/24/2016 - 4:59pm
Replies by: CCJ, Janner

Have other people found that the biopsy results take a long time to come back? Nearly 2 weeks for my husband's  initial diagnosis and waiting for WLE results... on 8 days now. 

Anyone know why this might be?

Thanks

Carolyn 

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Randy437's picture
Replies 8
Last reply 3/30/2016 - 2:39pm

My CT yesterday was clear (except for old man things not related to cancer smiley) and my brain MRI of several weeks ago was also clear.  I'm stage IV (mets to both lungs, brain and intestine) and have been NED since January, 2010.  Why me?  I don't know.

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Scooby123's picture
Replies 12
Last reply 3/25/2016 - 10:09am
Replies by: Scooby123, Mat, Momofjake, Anonymous, BrianP, Bubbles, jennunicorn, Gene_S

Well after waiting 4 weeks for results my results was liver , lungs still stable but found 4 MM. spot on brain.

going to have radiotherapy next week to treat it., but no other treatment . I think due to my lungs liver stable from ippi, and they treat head different . 

Please advice , experience on head tumours and radiotherapy treatment. Been told cannot drive, was planning a holiday with my daughter before she goes to uni in September.

keep well all

scooby123❤️

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