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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Christine.P's picture
Replies 2
Last reply 3/30/2016 - 7:21am
Replies by: Anonymous, jennunicorn

Does anyone have a favorite sunscreen to recommend? I can't seem to find one with all the right protections that feels and smells nice. Spring is coming and I want to get out of the house and won't dare without my sunscreen. 

Ideally, I'd like to find a light, soft lotion with a shea or coconut scent (or at least one that is not fruity or perfumy). 

Christine P. 

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Hi,

Melenoma runs in my family (my mom passed away from it when I was 12), so I've always been concerned that I'd develop it. I've watched my moles closely and I noticed one in particular that my dermatologst had said to watch had changed.

I went back to the dermatologist to have it looked at and sure enough she said we should remove it and send it in for a biopsy. I'm not sure if she did a shave or an excision (I didn't watch or ask because it kind of freaked me out). Anyways, I got a call back today and the results came back as severely atypical and they want me to come back on Monday to remove more and send it in for a second biopsy.

Of course I'm concerned due to my family history of it, but do I have anything to really be concerned about? Is it possible that this is a melenoma?

Thank you!

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WithinMySkin's picture
Replies 2
Last reply 3/29/2016 - 12:21pm
Replies by: jennunicorn, Mat

Jimmy Carter seems to be raising awareness (and money) for Melanoma, whether he wants to or not!

https://www.washingtonpost.com/news/to-your-health/wp/2016/03/29/bloombe...

WithinMySkin

www.Withinmyskin.com

 

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Tamlin's picture
Replies 2
Last reply 3/29/2016 - 11:58am
Replies by: JuTMSY4, Anonymous

 

Re: Lump in groin 

Tamlin -  (3/29/2016 - 8:43am)

New update: consultant called today to say that although nothing else seen near enlarged lymph node which is a good sign, he has referred me to have lymph node removed and tested for melanoma. I'm starting to get a bit scared now. To meet consultant next Tuesday so he can go over the operation with me. Does anyone know if it's safe to fly after this operation as I'm due to go on holiday in May? How long were you in hospital and how long for recovery? 

Thanks 

 

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Charlie S's picture
Replies 13
Last reply 3/30/2016 - 5:59pm

I guess for me, it is never going to end; maybe that is good maybe that is bad.

1987 Stage III unknown primary, hot lymph nodes , surgery and silence until 1996 then recurrence to Stage IV.  

Slew of surgeries, interferon, interleukin, seven recurrences through 2008; then quiet again.

And now, 29 years later, here we go again.

Swollen belly, big leg pain and bad scan.

I kind of thought (with my fingers crossed) that maybe I had paid my dues; but just saying so does not make it so.

I know the rules say no swearing...........................but I am so fucking tired of melanoma

 

Charlie S

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gcooperbl's picture
Replies 1
Last reply 3/29/2016 - 12:51am
Replies by: AllysonRuth

hi all

my father has had persistant pain in his leg and sometimes back during his course of pembro - it has only recently started to get worse the last few days. He is due to get MRI scan tomorrow to see if cancer has spread to bones or get a bettter idea of the pain. 

anyone had any experience of pembro causing severe muscle pain?

he has really bad fatigue as well and has had three doses of pembro, due another one on friday 

thanks so much

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RMcLegal's picture
Replies 2
Last reply 3/29/2016 - 11:32pm
Replies by: Anonymous, BrianP

I haven't posted here in a very long time.  Feeling emotionally drained from the loss of too many melahomies.  But I haven't lost hope...

 

 

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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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