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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Sasha's picture
Replies 1
Last reply 6/18/2013 - 10:18am
Replies by: hbecker

Hi All,

 

I haven't been to this Board in years!  I'm 39 years old and have a history of two melanoma insitus and one melanoma Stage 1a.  I have been cancer free for about ten years now.  I had a new place on my back just below my neck and wasn't sure what it was.  It was a colorless bump about the size of a pencil eraser on my skin that just recently started bleeding a little and became very tender!  I saw my doctor last Wednesday and she told me at the time she thought it was another melanoma.  She examined me and I had a couple of swollen lymph nodes in my neck.  She asked if I had been sick recently and I told her but I have been running a fever of around 101.5.

Anyway....the biopsy came back as "Invasive, well-differentiated, squamous cell carcinoma; with features of Keratoacanthoma."  I'm thinking that is good, right?  I'm suppost to go back on Thursday to have a WLE.  She said that further test weren't needed becuase this cancer is not likely to spreadsheet.  Does anyone have expenience with this type of cancer?  Am I doing my due dilligence by just having a wide lesion excision?     I'm

I appreciate any input you may have.  Thanks!

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Kate M's picture
Replies 2
Last reply 6/18/2013 - 2:07am
Replies by: JerryfromFauq, hbecker

Just wanted to tell everyone Thank You!
My mom is stage iv and I'm trying the best I can to help her throught this nightmare.
The information here is helpful and so appreciated .

Kate

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greeneggsnham's picture
Replies 4
Last reply 6/15/2013 - 4:19pm
Replies by: chalknpens, kylez, ecc26, Anonymous

Question...In Dec. I had a melanoma removed from my left thigh via 2 wide excisions (the first didn't get wide enogh margins) and am .72mm breslow's with a Clark's Level 4-I had a sentinal node biopsy due to rapid cellular mitosis.  I found a large brownish mole on my left buttock/hip area-slightly irregular border, variation in brown color, asymmetrical.  I'm not panicking as i will see oncologist in about 8 weeks, but I was looking at images online-how do I know if it is a dysplastic nevi (I don't think I have these) or is it another melanoma & is that common?  Thanks!

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lrkg1234's picture
Replies 9
Last reply 6/15/2013 - 2:16am

Scott had his last dose #4 of IPI on April 18th.  He had his scan early May.  The scan showed growth in tumors and a few new ones.  His energy level was very low and was spending a lot of time in bed.  Tumors began popping up and were visible through the skin and a few above the skin.  Things were looking bad.

Suddenly, in the last week, he is full of energy.  He worked in the yard all day today and is spending more time at the office.  Crazy Good!  He is not on any medication other than pain medication. No steroids or anything else.

Now if some of these exterior tumors would go away that would be encouraging!  I hope Ipi I is doing something.  It could be that his body is enjoying a break from treatment, but it could be a positive response. 

He is like a different person!  I think he could do other treatments now because he's seeming like his old self.  Hope this lasts.

Question:

Has anyone had Ipi work for them? Was it at the 8-12 week mark or more like 16 plus weeks?  When do you think you knew that is was doing something?  

Tell me something good....... :)

Lisa (Scott's wife)

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bikerwifee's picture
Replies 19
Last reply 6/14/2013 - 9:02am

My husband and my best friend passed away Wednesday at home surrounded by his family and best friend. No more struggles and no more pain.

Lynn was a biker and a cival war reenactor and a veteran so what a send off he had. He was buried with his biker colors and escorted to grave site by a mile long of nothing but bikers. The thunder rolled.

Lynn was saved so I know he rest safely in the arms of jesus. Dont every give up Lynn fought till the end. Thank you all for the support and love.

God Bless
Belva

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SarahW's picture
Replies 8
Last reply 6/14/2013 - 5:40am
Replies by: SarahW, POW, gostan, jmmm

Hi all,

Just back from Moffitt last night. My husband has 2 brain mets, one is 2.6 mm the other 2.7 mm. We are kind of stunned, but I suppose we shouldn't be. He's on Vemurafenib. He was on XL888 with the Vemurafenib, however XL888 has been d/c'd due to brain mets. He's off study now. The tumors in abdomen and lungs etc are stable. Oncologist is proposing stereotactic radiation.  Is this the same thing as Gamma Knife? Oncologist said it would be a "one time targeted radiation of just the tumors, not the whole brain." If you or your family member has had this procedure how did you/they feel after the procedure? Any particular side effects on the day of or after treatment?

 

Thanks so much for your input.

Sarah

www.thelaundrythief.blogspot.com

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Shelby - MRF's picture
Replies 7
Last reply 6/13/2013 - 10:46pm

The Melanoma Research Foundation is working hard to make our website an even better experience – where the community of people with melanoma, survivors, researchers and caregivers can find and share valuable information and support, as well as find out about opportunities to get involved.

We value your opinion, and invite you to take a moment to complete a brief survey on how you think about and search for essential information on our site. The survey will take no more than 10-15 minutes, and is followed by a few very important exit questions. Here’s the link: http://bit.ly/106golB

Thank you for participating, and be sure to share the link with friends – the more input we get, the better your experience with the MRF website will become!

Because we are hoping to get a new website up and running as soon as possible, we’re asking respondents to complete the survey by Thursday, June 13.

Sincerely,

The MRF team

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/13/2013 - 9:04pm
Replies by: JerryfromFauq, Anonymous, washoegal

Does anyone have suggestions for a family member diagnosed with stage iv melanoma and no insurance? Unfortunately, we do not qualify for medicaid, but are far (very very far) from being wealthy.

Thanks!

P.s. I already looked into every type of insurance - can't find anything.

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ad2424's picture
Replies 6
Last reply 6/13/2013 - 4:41pm
Replies by: joy_, JerryfromFauq, ad2424, Anonymous

According to this study (http://www.ncbi.nlm.nih.gov/pubmed/23666915) 10mg has higher survival rates than 3mg. Does anyone know if studies are ongoing regarding best dosage?

Does the FDA ever change a dosage once approved?

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Melissag0624's picture
Replies 14
Last reply 6/13/2013 - 3:19pm

According to this study (http://www.ncbi.nlm.nih.gov/pubmed/23666915) 10mg has higher survival rates than 3mg. Does anyone know if studies are ongoing regarding best dosage?

Does the FDA ever change a dosage once approved?

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Tim--MRF's picture
Replies 3
Last reply 6/13/2013 - 1:57pm

I had a long conversation today with a patient who has had three boughts with mucosal melanoma of the vulva--all treated wtih surgery.  Now that she has gone the third round she feels that another approach is warranted.  Her surgeon is recommending resection of the vulva and lymph nodes, then treat with leukine.  A gynecological oncologist has recommended radiation.  She does not have the c-kit mutation. 

This patient has no computer and no access to a computer.  She has an appointment with a melanoma doctor tomorrow afternoon, but is completely confused as to what course of action to take.

Can anyone suggest questions she should ask of the doctor she sees tomorrow?  I know a few doctors who have treated a lot of mucosal melanoma, but some of the particulars are likely to escape me.

I wil be speaking with her again tomorrow late morning.

Tim--MRF

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Anonymous's picture
Replies 1
Last reply 6/13/2013 - 7:57am
Replies by: gostan

Hi,

I am new to this forum & I am so lucky I found you. Everyone is so helpful & informative.

I am participating on a MERCK PD1 trial. I have been a completer responder for over 6+ months. I just had my routine MRI Brain & CT scans. My scans showed NO tumors in my body BUT my brain MRI showed a 7MM brain met of the posterior left frontal subcortical.

My doctor is waiting for Merck to decide if I am going to be kicked off the trial. I am not sure if other sponsors (e.g. BMS) let you radiate a brain lesion and then go back on the trial.

I would sincerely appreciate any input about your experience with being on a trial and then getting a brain met. Were you able to stay on the clinical trial?? Did you radiate your brain lesion and the continue with the clinical trial? Who was the sponsor of your clinical trial?

I realize that every clinical trials have different protocols but is there are general rule when it comes to getting a brain met while participating in a clincal trial??

Thank you so much for taking the time to read my post and responding.

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Hi all,

Just back from Moffitt last night. My husband has 2 brain mets, one is 2.6 mm the other 2.7 mm. We are kind of stunned, but I suppose we shouldn't be. He's on Vemurafenib. He was on XL888 with the Vemurafenib, however XL888 has been d/c'd due to brain mets. He's off study now. The tumors in abdomen and lungs etc are stable. Oncologist is proposing stereotactic radiation.  Is this the same thing as Gamma Knife? Oncologist said it would be a "one time targeted radiation of just the tumors, not the whole brain." If you or your family member has had this procedure how did you/they feel after the procedure? Any particular side effects on the day of or after treatment?

 

Thanks so much for your input.

Sarah

www.thelaundrythief.blogspot.com

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Tina D's picture
Replies 7
Last reply 6/12/2013 - 11:41pm

Hi all,

It has been a while since I updated, I had to postpone my scans by 2 weeks due to my husband needing surgery. My PET shows no new areas, so for that we are incredibly grateful. But, the tumors that had initially begun to shrink fafter ipi, have begun growing again :-( . SO... My Dr is running a PD1 trial, I may get into that, or there may be other options. He is at ASCO & will be in touch tomorrow with all possible scenarios for treatment that he thinks appropriate at this point. This was incredibly disappointing, but, as always, my days belong to the Lord, and we continue to trust Him. I am down to 5 mg prednisone daily ( for the pituitary inflammation from ipi) and doing well on that. Big decisions to make over the next days, and I will try to post an update as we decide what to do next.

For now... One day at a time....

Tina D

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