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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beatricefromPARIS's picture
Replies 1
Last reply 5/21/2014 - 9:08am
Replies by: Tina D

Hello Tina,

A quote from one of your 2012 messages when you had to stop Zel because of uveitis

"My pupil is actually shaped like a sideways heart at the moment... looks rather unusual, haha!"

Did that pupil problem solve in the end and how?

I also had to stop Zel because of uveitis early January. 2 months after stopping, I developped on one side a drooping eyelid and enlarged pupil (reactive but larger than in the other eye). Exams have ruled out serious causes such as problems in the brain which could damage eye nerves.

My ophtalmologists here seem puzzled by this rare occurrence.

Just curious to know what your experience is...

Thanks in advance

 

Beatrice

 

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starletwoman2007's picture
Replies 3
Last reply 5/21/2014 - 9:09am
Replies by: ecc26, starletwoman2007

Just been told that my brain mets have got worse and that need wrbt. I am currently on vem only. Just wondered who had had it and been any effects. Also how successful has it been for people?I

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Momrn5's picture
Replies 6
Last reply 5/21/2014 - 9:20am
Replies by: Momrn5, Thandster, G-Samsa, tcell, JerryfromFauq, Anonymous

I am Stage 3a with micromets to the Sentinel node only.  Had scans 5 months ago showed a couple abnormalities.  I had a follow up brain/head MRI and Chest CT yesterday.  The 2 mm and 3 mm nodules in right lung did not grow  and Onc. Told me he feels that they are granulomas and nothing to worry about.  That being said, he wants a follow up CT in 6 months.  The uptake is still " different" on the top of my head, but he said that they feel it's nothing. Possibly an abnormality that resulted from a head injury when I was a kid.  He won't order another MRI for a year.  All blood work including LDH normal.  Now the question....I am thinking of getting my next CT scan locally because of the distance I have to travel. I live in a smallish town in the U. P.   Would people in this group feel OK doing that? Or should I stick with the scans at U of M?   Opinions requested.  Thanks! 

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MixtaJones's picture
Replies 8
Last reply 5/21/2014 - 9:41am
Replies by: MixtaJones, JerryfromFauq, hbecker, Anonymous, Teochasse

I am trying to find some information in regards to how fast melanoma spreads in the body. I cannot find much online so figured I would turn to people with experience.

I first had a mole removed in July or 2013 that was a superficial spreading melanoma .97mm deep. My general practitioner removed it a biopsied and found it was melignet but since the margins were clear he said I was fine. No more tests. 8 month later I found a lump under my arm and was diagnosed with early stage 4 shorty after. My big question is what stage I was at when the mole was removed? I know it had already started to spread I have no clue how to figure out how much worse my situation has become becasue the doctor didn't do any further testing. Does any have any input they can give me?

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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braunerk's picture
Replies 3
Last reply 5/21/2014 - 10:39am

Well a little history April 2007 stage 2a with me on left foot on arch/bottom of foot April 2014 small subq met on left leg stage 3b May 2014 I ended up in hospital with septic shock and was able to get them to image my abdomen and they found a mass 7.5 cm by 6.6 cm and involvement with lymph nodes so now stage 4. Also got them to scan the brain and no involvement at this time. They have sent tissue samples out for gene testing and them will decide on treatment. Any suggestions on which treatment would be best. Still can't believe what has happened. I am seeing a mel specialist in Tucson AZ so got that covered. But any other suggestions would be helpful

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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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