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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Replies by: Bubbles, arthurjedi007, Anonymous

Did I make a mistake? Went to 2 long distant places and signed the forms so they can get my biopsy material that was done locally so they can do their test to see if I qualify for their trial. The tests will be done at different places.

Wont that create a bottle neck where only the first place that got the material sent to them would do the test then the other place would have to wait until that test is done? Or would the local place send only a small amount to each? Good luck trying to get any info from the local place. It took my doc 3 months to get the result from a trial he tried to get me into.

If I did make a mistake then I need to call the place that I'm not sure about their trial anyway and have them not do the test. The other place I really want in that trial.

Artie

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newmanmark's picture
Replies 2
Last reply 5/8/2015 - 4:20pm
Replies by: G-Samsa, ecc26

I started the Mekinist and Tafinlar combo almost 3 weeks ago.  So far so good with minimal side effects.  The only thing I have noticed is aching/sore knees.  I started a running program one week before I began treatment and continued after I started the medications.  Last week I noticed my knees were aching but I attributed it to the running.  Well, the pain has lasted for over a week now so I'm pretty sure it has something to do with the medication.

Has anyone else had this issue on the combo therapy and if so have you been able to manage it?  What are you using to ease the soreness.

Thanks
Mark

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/11/2015 - 1:12pm
Replies by: Julie in SoCal, Speedster, Jubes, arthurjedi007, Anonymous, Mat

I have heard some people mention that steroids, while often needed for side effects, reduce the effectiveness of Immunotherapy drugs such as Yervoy, Nivolumab, Keytruda etc. My oncologist seems to have a different opinion - that steroids does not reduce the effectiveness of the immunotherapy drugs.

Has anyone heard from their melanoma oncologist one way or another about this?

Thanks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/7/2015 - 6:31pm
Replies by: Donna

Has anyone ever experienced ongoing pain beneath right breast, w/o any obvious lump or anything?    Any movement it hurts, a rigorous walk, coughing, laughing, etc.!   It's been over a week and I'm trying to wait it out and see if there is any change but it is quite uncomfortable and interfering with daily living.

Cathy

Stage 3a

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/7/2015 - 11:52am
Replies by: Janner, Anonymous

Looking for help. Trying to understand my husband's pathology report. Doctors say his melanoma was in situ but I'm trying to understand because it doesn't say how big the margins are only that it was caught early and was low risk.  

-residual malignant melanoma in situ

-margins are negative

-previous biospy site changes

Microscopic description: Sections show a proliferation of junctional melanocytes exhibiting confluent growth along the dermoepidemal junction and pagetoid spread.  The tumor is located in close proximity to an area with changes consistent with a previous biopsy site. All margins are negative. 

Gross Description-

Received in formalin, labled right ear lesion, is a irregular skin with subcutaneous tissue with a single stich marking superior and double stitch marking posterior.  The specimen measures as follows: 2.2 cm from superior to inferior, 1.8 cm from anterior to posterior and 0.4 cm from superficial to deep.  The specimen is inked as follows: Green for posterior half and black for anterior half. 

 

I didn't go with him to his follow up appointment and just looking for some help understanding this. 

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eturner82's picture
Replies 8
Last reply 5/15/2015 - 10:42pm
Replies by: _Paul_, RJoeyB, Wheels1994

Hi guys,

I always like to have a plan B for my husband here is a run down on my husband and the treatments he had had.

May 2007- stage 1 mole on right shoulder removed

Feb. 2, 2013- Yearly derm appt. dr feels enlarged node in right arm pit

Feb. 18, 2013- Meet with Mel specialist UVA- ATTEMPTS biopsy of node but only pulls fatty cells and spindle cells- Orders MRI AND CT

Feb. 23, 2013- MRI of brain clear- CT showed "snowstorm" small areas on right lung

March- Rt. Lung has biopsy- NEG (no cancer ) biopsy

April 2013- 6cm lump removed from right armpit and is POSITIVE for mel

May 2013- All nodes removed from right arm- NED

July 2013- Radiation to right armpit

Sept 2013- CT of chest ( was going to do a vaccine trial at UVA)- CT showed he was not NED and had bone met to lower spine

Nov 2013- IL2 - after 2 rounds scans show growth- Bone Mets

Feb 2014- starts Braf combo drugs- responded until July 2014- Bone mets

Sept 2014- starts IPI and receives all four doses ( scans show progression) Bone Mets( spine, hips, ribs and skull) Bone mets are to numerous to count and both Lungs have multiple mets.

2015- STARTS PD1

Which now brings use to May 2015- First set of PD1 scans showed 1 new tumor in lung and new adrenal gland- continued on with PD1 (giving plenty of time for PD1 to work) scan coming in one week- He has had a rib break in this time and pain in his spine which has lead to a X-RAY that showed a T-5 spinal tumor and radiation was given to the area- last week arm pain lead to large arm tumor being found and rod being placed in arm today.

Needless to say I am very nervous about next Mondays scans and wondering if anyone has any suggestions on our next step if PD1 is not our magic bullet.... Would he be someone who could even have TILS?

 

thank you 

EMILY

 

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Anonymous's picture
Anonymous
Replies 0

We read every day but do not want to miss anything. Is there somewhere to get research help on stage 4 melanoma trials and treatments? This would be a easy task for a melanoma student. Maybe a student at MD Anderson? Thanks

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Anonymous's picture
Replies 2
Last reply 5/7/2015 - 6:11am
Replies by: AshleyS, Wheels1994

With bad luck in the past on just getting the Dr they give you, we're asking for help. We have done alot of research and want a Dr to go over all treatment and clinical trial options weather at their location or another state.. Thanks

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arthurjedi007's picture
Replies 15
Last reply 5/8/2015 - 1:50pm
Replies by: Anonymous, arthurjedi007, ecc26, JoshF, Wheels1994, Mat, RJoeyB

Basically they have several immunotherapy trials with no openings. They are phase 1 stuff for things they briefly mention in the videos we watch that they are looking into. Also if I understood right although the lag3 pd1 trial has arms for those of us who failed pd1 they haven't started filling them. they have one opening for one trial they have not given to humans yet but you have to have a certain protein on your tumor biopsy so should know in about 3 weeks. Talk about a ratty if that happens. 

He also thinks TIL is an option if you can get in.

For those who have ran out of immunotherapy options he has seen a chemo combo do really good. Way better than they used to see. I forget the names but he said they are fda approved.

Artie

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/8/2015 - 7:52am
Replies by: arthurjedi007, Anonymous, Mat, RJoeyB, Janner

What does bone tumor pain actually feel like?

I have a history of melanoma with 1 recurrence in the past 2 years and have been having increasing pain in my right hipbone/pelvic area, sometimes it radiates slightly into my back, sometimes a bit down my right leg, but mostly it seems to be right at the hipbone.  It has been gradually increasing for a few months but has just gotten really bad the last few weeks, so that it went from occasional and more of a dull ache, to constant and sometimes almost unbearable, though it will reduce back down to a dull ache, but now it is always there. 

I am going in for a CT scan but I can't seem to find much on what bone pain from tumors might feel like.   Melanoma lesions can be small, so I am not sure how aggressive I should be in following this up if the CT doesn't show anything.  Should I ask for a PET CT?

Does this sound anything like bone tumor pain to any of you?

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Replies by: Janner, kpcollins31

I love my onocologist but he can be so vague....please help me understand.

just had surgery a week ago for right axilla lymph node dissection.

 

Final Pathologic Diagnosis:

A. Lymph Nodes, Right Axillary, Level 1 and 2, Dissection:

       * Metastatic Melanoma involving matted lymph nodes, 5 cm aggregate;  14 additional negative nodes

B. Lymph Nodes, Right Axillary, Level 3 and 4, Dissection:

     * Metastatic Melanoma in one of 4 lymph nodes, 1/4/

    * Metastasis spans up to 3mm.

   * No extrandoal extension is identified

C. Skin, Right Supraclavicular Area, Wide Excision:

    * no melanoma identified

    * previous biopsy site

 

Comment:

In  conjunction w/ previous Path report from 3/13/15 , pathologic stage is pT3a pN3 (matted metastatic nodes)

BRAF mutational analysis was performed on prior biopsy 

 

 

 

ok my previous biopsy i posted as well the path reports, but i dont see anything saying BRAF, i know i am clueless.

 

They are reveiwing my case during tumor board tomorow to come up with the next plan of action, be it radiation or immunotherapy. But I am so clueless. I dont know what any of that means and it seems he just likes to be vague and keep it moving. So basically i am still waiting. But hey least they got these nasty tumors out of me.

 

Anyone that can help me understand this will be greatly appreciated...

 

 

 

 

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Lkopf's picture
Replies 6
Last reply 5/11/2015 - 10:58pm

Hi everyone! I am a 23Yr old nursing student. I was diagnosed in March of 2015. My story is still in the making but here it is. In 2011 I had a suspicious birthmark that began to change so I had it removed by a dermatologist. No big deal. Fast forward 4 years to today... I had a lump show up in my forearm, my dr wasn't very worried at first. But several months later more lumps started showing up around my neck and underarm. Long story short I now know that I have stage 4 melanoma. It is widespread in my body including some places like my gallbladder, spleen, both adrenal glands, lungs as well as my brain.  I underwent a gamma knife procedure 4/2015 to attack the 12 lesions in my brain. I had a small complication from several of the lesions bleeding but feel good. I start yervoy treatment tomorrow and am having some nerves but staying positive. Hopefully I can find someone who can say they have been where I am. Thank you!

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/5/2015 - 11:06am
Replies by: Anonymous

What is the best hope for small nodular metastatic melanoma that originated as mucosal (anus)

Are these smaller nodular types more diffucult to treat?   

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Wheels1994's picture
Replies 3
Last reply 5/5/2015 - 3:02pm

I've had many side effects come and go.  However, this Peripheral Neuropathy that I've had for the last 5 months has been ridiculously annoying.  Constant numbness and tingling of the feet and numbness of the finger tips.

Took all of the neurology tests to rule things out.  The theory is that the when I had 3 treatments of CVT following my Yervoy failure, the 3 Cisplatin doses caused a slow, progressing case of peripheral neuropathy that took about 3 months to get where it is today.  The docs seem to think it will get better with time and possibly subside completely.  There's also thought that it could be permanent to a degree.

I'm thankful that this is the only thing I'm dealing with right now at stage 4.  Just wondering if anyone else has had this experience with peripheral neuropathy:

How long did it last?  What was your experience?  What drug caused it?  Did it progress slowly then level out?  Duration?

 

Thanks in advance for a recount of your experience!

Matt

Matt King

Diagnosed Stage 4, July 2014

MD Anderson, Dr. Patrick Hwu

IU Health Simon Cancer Center, Dr Ted Logan

Currently responding to KEYTRUDA since January 2015

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