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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Shelby - MRF's picture
Replies 4
Last reply 5/21/2014 - 12:06pm
Replies by: Anonymous, IntegratedResearch, Tina D

Dear MPIP Community,

We were recently contacted by Integrated Research and Data, a research company based out of Ft. Lauderdale, FL. They are currently searching for melanoma patients, diagnosed at different stages, to participate in an online survey. The goal of their research is to understand different aspects of patient needs and treatment plans. 

The first step would be a screening done by phone. Follow-ups would then be done to get the right amount of different types of patients. If you are selected to participate in the study, you will be given a $150 Visa prepaid debit card. The survey, if you are selected, is expected to take approximately 40 minutes of your time. The survey is encrypted to meet HIPAA compliance and particpants will not be contacted afterwards unless it is to confirm your mailing address to send your payment. 

If you are interested, please email MelanomaStudy@IntegratedResearchandData.com and you will be contacted to pick a time that is convenient for you to go through the 5 pre-screen questions. 

I hope everyone has a nice weekend!

Sincerely,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/21/2014 - 12:15pm
Replies by: Mat, ecc26, starletwoman2007

Can someone tell me whether they have had wbr and if was successful. Did there hair grow back?

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/21/2014 - 2:09pm
Replies by: NYKaren

Can you tell me ate there any people out there who have had long term brain mets. I have just been diagnosed with them and just wondered if I stood a chance x

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SamC 23's picture
Replies 4
Last reply 5/21/2014 - 3:27pm

I met with my Thoracic surgeon today and feel relieved yet still nervous for what lies ahead. Next Tuesday he will perform an EBUS, I didn't know but lymph nodes in my lung are enlarged. He will biopsy the nodes and hand them over to a pathologist in the OR and determine if it is MET or not. If it is MET they will leave the node in my lung as a marker for treatment. If the lymph nodes are negative a wedge resection will be done. 

in essence more surgery is better then a little. I'm staying positive for the best outcome. Definitely sucks having to wait yet another week to determine what is going on.

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GrammyM's picture
Replies 8
Last reply 5/21/2014 - 3:30pm

My husband was diagnosed with stage 4 melanoma 2/27/2014 when his horrible back pain proved to be a tumor on his spine, with active cells in brain and lungs.  At 6 ft and 160 lbs, he has always been a health nut, eating right and daily trips to the gym.  After two separate week long hospital stays for pain management with concurrent radiation treatments he has dropped to 122 lbs.  With so little fat, the loss is muscle and he can walk only short distances with his walker.  Has anyone out there come back from a weight loss like his?  If so, please tell us how.

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rgrand's picture
Replies 3
Last reply 5/21/2014 - 3:38pm

Got hone from surgery about an hour ago. Medical nuclear imaging took longer than my surgeries did! I was in the operating room for 1:50.

No nausea from anesthesia. Now I have to keep my foot elevated for a week.

Awaiting WLE biopsy and SLN biopsy now.

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virginia washburn's picture
Replies 12
Last reply 5/21/2014 - 4:02pm

What a road this has been. My husband has metastatic melanoma (lung, brain, subcutaneous). He has done 2 rounds of Ipi, had Gamma Knife x 3, and just completed whole brain radiation. (He had "at least" 28 brain tumors on his last MRI)

He has an appt. next week to discuss possible Anti PD-1 therapy. He will have to wait a minimum of 30 days, generally recommended 8 weeks for MRI to see if his brain tumors have recurred. So, for now, we are in "Limbo", the so called gray area. We know his prognosis is not good.

I have asked the Cancer Center to refer my daughter and myself for counseling. I'm so numb, I don't feel anything. I HAVE to be strong for my husband and daughter. I know the gates will open eventually. The uncertainty is nerve wracking. This consumes me 24/7. I can't think of anything else, it is always looming in the back of my mind. I have no motivation, no energy, no desire to do anything. Many friends have reached out to me, but I just do not have the desire to do anything.

Some friends have organized a benefit for our family this week end, and I know this will be very difficult.  It's so hard to beleive a year ago how optimistic the dr's. were and how well he was doing. He has recently lost 20 lbs, lost his hair (radiation), very pale. He has that "cancer" look. 

I pray everyday for strength to keep going. I'm exhausted, but I think of my husband and what he is going through, and realize he is facing his own mortality. I can not even imagine what he is feeling.

Virginia Washburn

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Jydnew's picture
Replies 2
Last reply 5/21/2014 - 4:11pm
Replies by: melanomafighter, BrianP

Hi everyone,

I haven't visited this page in a long time.  My husband is 12+ years NED after a diagnosis of 3a at age 26.  Lots of loss and joy since then: new jobs, new homes, the death of our infant son and the births of our beautiful daughters.  Life really does go on, and much happiness is in the smallest moments as well as the big events.

Reading over the posts on this page, I'm struck by how many positive posts there are on treatments for stage iv.  I'm curious what other people think - are treatments much improved over the paucity that existed 12 years ago when my husband was first diagnosed?

I ask because I know my childen are at increased risk of melanoma because of their dad's experience - especially my little red haired, blue eyed, white-as-snow skinned 4 year old, and I dream of the day when melanoma is cured.

Is there hope in these new treatments that it CAN be cured?  At least in the way, perhaps, that a disease like AIDs can now be held at bay and give the opportunity for long-term survival?

Thanks and best to you all,

Wendy

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Jme's picture
Replies 10
Last reply 5/21/2014 - 6:35pm
Replies by: Jme, Anonymous, Gene_S, OzzieK, Wolverine

 

My husband Was recently diagnosed with a 3b or 3c.. Unknown primary, Nodular melanoma. WLE in December with SNLB-  Lymph node clear.  Had a met occur on the edge of the scar in April and biopsied. Which actually ended up removing the met. Margins clear on biopsy. We are BRAF positive.  Where are consulting a second opinion at MD Anderson. Thoughts on PD-1? Yervoy, etc?
Also, his Sentinel node was on the opposite side from his Nodular tumor which several doctors find unusual.. Anyone had this occur?
 

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camping_mama's picture
Replies 15
Last reply 5/21/2014 - 9:33pm

Hi, my 7 year old daughter was diagnosed with melanoma about three weeks ago.  The tumor is a 1b. Thankfully it was small (.47 mm) but had a mitotic rate of 1 and vertical growth so they deemed it a "b" not an "a".

She underwent her wide excision and SLNB on friday and we find out results next week.

I know there are probably only a few folks on here with pediactric melanoma diagnoses.  Can anyone point me to an online support or information group for parents?  I saw the reference from 2 months ago for littlestwarriorspot.com, but the post also mentioned that there was another group.  If anyone has the info for that group and would pass it along I would be very grateful.  Thank you!!

 

 

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/21/2014 - 9:52pm
Replies by: Bubbles, Anonymous, kylez, Janet Lee, BrianP

Can you tell me ate there any people out there who have had long term brain mets. I have just been diagnosed with them and just wondered if I stood a chance x

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SarahW's picture
Replies 3
Last reply 5/21/2014 - 10:13pm
Replies by: Aussielyn, SarahW, NYKaren

My husband has been on the dabrafenib mekinist combination since February. Last Wednesday he started having fever and chills every afternoon and evening and feeling very tired. He is on a 48 hour drug holiday and steroid taper now. 

For those of you who have had these side effects, did the episodes recur once treatment was resumed? Did you have dosage adjustments? Did that work?

 

thanks for your input

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tcell's picture
Replies 5
Last reply 5/22/2014 - 3:39am
Replies by: tcell, kpcollins31, Gene_S, Mat

Hi all,

had my first scans after begin of BRAF / MEK therapy in February this morning and will discuss the results on Friday with my oncologist.

I originally had mets on lungs, liver, adrenals, pelvis and th-10. Hoping that my tumor burden has been reduced at least at bit!

I had no brain mets according to the PET they did back in February. The onc said that because of that there is no need for an MRI but just had a CT of skull, thorax and abdomen done. He suggested that if they find something suspicious in the CT we would do an MRI of the brain

Q: Do you usually get MRI scans with stage IV melanoma every 3 months as a routine? Is the CT still accurate enough to show lesions in the brain, especially when they are rather small?

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Ninniditti's picture
Replies 2
Last reply 5/22/2014 - 4:05am
Replies by: Ninniditti, BrianP

Hi!  I had my first ipi-infusion about two weeks ago. After four days I got ichting, fever and was very tired. Livertests taken were bad so I ended up in hospital where I still am, now one week. I immediatly got cortisol infusions whichte took care of the itching and fever but not livervalues and tirednes. Now the doctors search for reasons to the liverinflammation and treatment. Virus is tested negative so the only reason has to be ip side effects. Biopsi is taken but no results yet. Has someone here gone trough the same and have any advices?

Inger

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ray39's picture
Replies 1
Last reply 5/22/2014 - 7:31am
Replies by: Tina D

Got my wide excision results today and margins were all clear.  They never said it was definitely melanoma and leaned more toward severly atypical.  Thanks to everyone who responded in my time of crisis.  I have more atypical looking moles so this will be an ongoing thing for me.  I wish you all well and will be praying for you.  

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