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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rabbits68's picture
Replies 5
Last reply 4/28/2015 - 7:09am
Replies by: rabbits68, MattF, newmanmark, Mat

I have been on Mekenist/Tafinlar combo for about 2 weeks and have been suprised (and thankful) that I do not have any side effects.  I was told the first 6-8 weeks would be rough until my body adjusted to it.  I ran a slight fever the first day, but since then I have felt good.  I have read some literature that says you won't feel side effects until a month. I am just curious if there is anyone who has had this same experience or is it too early to tell? Thanks,

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StephyD83's picture
Replies 4
Last reply 4/28/2015 - 7:07am

Hi All-

Last week I had a Fine Needle Biopsy of lymph node in my neck that the Dr felt to be large & hard. He just emailed me & said the cells were indeterminate & they had to send it off for special staining to differentiate healthy from malignant cells. Does this mean my lymph nodes does have Melanoma in it?  Has anyone else had this on a FNA & if so what was your final result?

 

Thanks!
Staphanie

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yazziemac's picture
Replies 6
Last reply 4/28/2015 - 6:44am

Just got back from the cancer centre where Pete was fitted with a catheter that was necessitated by the fact that he can no longer urinate.  They believe it's due to the brain mets.  Just waiting for this liver inflammation to go down so that he can get back on the Ipi.  Homecare is coming tonight to show us how to manage the catheter at home.  Honestly, between his cane and now the catheter, my 56 years old husband is like an old man---breaks my heart.

 

Yasmin

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Jubes's picture
Replies 2
Last reply 4/28/2015 - 12:06am
Replies by: Bubbles, Ed Williams

Hi all. I have been on keytruda since September 2014  I recently posted about a problem I have had with cramps all over my torso. It is like frozen shoulder but from top of neck down to hips. It was agony and I couldn't move. I am in Europe and was worried I couldn't get home to Australia. My dr gave me the ok to take 25 mg prednisone and it is like a magic wand. Up to now I had been taking 900 mg ibuprofen every 6 hours and it didn't really help much. I know the prednisone counteracts the Pembro but at least I can get home now and I'm sure my doctor will have a plan :) he is amazing.  I just wanted to share this with you as this problem has been increasing over the last 10 weeks until it became unbearable. I could only find one other person on this site that has had the same side effect 

anne-Louise 

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Dear MPIP Community Members:

Researchers at the University of North Carolina are working to develop programs to support families affected by a parent’s cancer. If you are the parent of one or more biological or adopted children under the age of 18 and have been diagnosed with advanced cancer, you are eligible. If you would like to participate, please use the following link to complete this ANONYMOUS survey:

http://go.unc.edu/ACAPUNC

The Principal Investigator for this study is Dr. Eliza Park of the University of North Carolina at Chapel Hill. Questions about the study can be directed to Dr. Park at Leeza_park@med.unc.edu or (919) 966-3494. The survey should take approximately 20 minutes.

Sincerely,

Shelby - MRF

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buffcody's picture
Replies 1
Last reply 4/26/2015 - 1:17pm
Replies by: Anonymous

Catharine Poole who heads up the Melanoma International Forum just had published her latest book on melanoma.  It's up to date, which because of the greatly changing nature of the field is of great importance to us but hard to come by in readable and comprehensive form as this book provides.  The price is right from Amazon with an interesting Kindle offer right now.  (I don't have a Kindle so I can't try it.)  The easiest way is to just enter Catharine Poole in the search engine on the Amazon site (or Barnes and Noble) and Voila! you'll have it all. I'm a sometimes poster here and have profited a great deal from this forum and Catharine's

 

Frank

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/26/2015 - 5:20am
Replies by: Beezer, arthurjedi007

Hello Friends, My sister is two months out from her last WBRT for two large mets to the brain, she also has it in her lungs but the combo chemo drug she was on before WBRT was shrinking those, unfortunately the cough is now back again and we are worried, she had to be taken off the combo drugs before WBRT started, and to be honest the side effects from the radiation were worse than we thought, it has affected her walking and one hand is affected and also her congnitive is affected, she forgets things easy and she can  get very anxious, and aggressive even at times, she is on 2000mg of Keppra so thats not helping, she is starting ipi next Friday and we are delighted with that, but speaking to her today on the phone she is totally flattened, she has no energy at all and I'm worried she will not have the strenght to deal with this new drug. She is only 49 and she is my light in a storm, Im devasted I cannot be with her each day as she lives in Queensland and I live in Europe. She is the greatest little battle soldier you can find and has am amazing husband who cares for her day and night, but I'm so worried today as her strenght was not there and what if she cannot manage the ipi, What worries me about all this is the side effects of the radiation have worn her down we never expected this, will these side effects go away or are we hoping for to much.

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Anonymous's picture
Anonymous
Replies 0

Hello Friends, My sister is two months out from her last WBRT for two large mets to the brain, she also has it in her lungs but the combo chemo drug she was on before WBRT was shrinking those, unfortunately the cough is now back again and we are worried, she had to be taken off the combo drugs before WBRT started, and to be honest the side effects from the radiation were worse than we thought, it has affected her walking and one hand is affected and also her congnitive is affected, she forgets things easy and she can  get very anxious, and aggressive even at times, she is on 2000mg of Keppra so thats not helping, she is starting ipi next Friday and we are delighted with that, but speaking to her today on the phone she is totally flattened, she has no energy at all and I'm worried she will not have the strenght to deal with this new drug. She is only 49 and she is my light in a storm, Im devasted I cannot be with her each day as she lives in Queensland and I live in Europe. She is the greatest little battle soldier you can find and has am amazing husband who cares for her day and night, but I'm so worried today as her strenght was not there and what if she cannot manage the ipi, What worries me about all this is the side effects of the radiation have worn her down we never expected this, will these side effects go away or are we hoping for to much.

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jessann's picture
Replies 3
Last reply 4/24/2015 - 5:46pm

Hi! New to the board and had a crazy ride so far. A mole I have had since birth, had a melanoma arise within it. Has anyone had this before? My first bioposy came back as: Clarks level III-IV with a lesion with app depth of 1.5mm, superficial spreading., but also said features that might suggest its arising from a congenital nevus, and should be considered approx. This triggered my surgeon to warrent a 2nd bioposy by someone that specialize more in melanoma. The 2nd report came back OPPOSITE! showing: Malignant Melanoma, superficial spreading, probable anatomic level 1 in-situ. WOW so now what do we do? I saw an oncologist who suggested I either do full surgery (SLNB and excision) or send it again to Dr. Mihms who deals with complex cases. I just got the new results today. It does explain it a bit more and I wonder if anyone has been in the same situtation? Malignant Melanoma, superficial spreaking, level IV, and a measured thickness of .55mm, arising with a compound congenital nevus with moderate atypia extending to within 1.5mm of the lateral margin. no ulceration, regression, or vascular invasion. Recommended a re-excision and the question of SNLB is left to the patient and physician. I haven't talked to the oncologist yet, no one calls back and I leave so many message (frustrating). And on another note I was scheduled for surgery today (because the oncologist said the 3rd results would be back mid week and as of last night at 5pm the nurses couldnt find them). So now my surgery will be this coming week and I am left to decide the best treatment. Any thoughts from the community? Also, with the full surgery, what is recovery like?

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/24/2015 - 1:42pm

I would like to know how long Keytruda treatment last. Hoping somebody on this board have experience with the treatment.
Good luck to all of you!

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1derdog's picture
Replies 1
Last reply 4/24/2015 - 1:03pm
Replies by: arthurjedi007

I could really use some positive information on my husband's latest ct scan.  7 months ago my husband had a lesion in his right middle lobe which was removed successfully by VATS procedure.  They got it all & deemed him NED.  Now, in his latest CT scan they found a 2.9 cm lobular lesion just medial to the uncinate process of the pancreas invading the superior mesenteric vein.  He is being scheduled for a pet scan next week to determine if it is melanoma again.  His doctor doesn't think it is but obviously wants to eliminate the possibility.  Is anyone on this board familiar with something like this? The waiting is awful since we found out. We were so happy for the last seven months thinking that maybe this was the end of this roller coaster ride.  He had the mass in his lung for two years while on a clinical drug & it did not spread.  

Any words of comfort or information (good or bad) would be greatly appreciated.  

 

Thank you

 

wife (caregiver)

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josephsli's picture
Replies 4
Last reply 4/24/2015 - 12:13pm
Replies by: jessann, POW, josephsli, Janner

Hi, 

I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.

Thanks

Joe

 

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flaglerjoe's picture
Replies 7
Last reply 4/24/2015 - 10:04am

Anyone else have the SLNB weeks after the WLE? They initially measured my melanoma as thin based on the punch biopsy, and after the WLE, pathology showed that it was actually a 2mm depth. Tomorrow I am going back from the SLNB that they did not do initially several weeks ago. 

 

I know this isn't ideal but I wondered if anyone else had theirs a while after the initial WLE?

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newmanmark's picture
Replies 4
Last reply 4/23/2015 - 6:18pm
Replies by: newmanmark, Ed Williams

I was wondering if anyone has any information on the treatment for melanoma mentioned in the last paragraph of this article.  It looks like there's some major progress being made.

http://ottawacitizen.com/news/local-news/ottawa-scientists-hail-viral-st...

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tomw65's picture
Replies 1
Last reply 4/23/2015 - 5:02pm
Replies by: Mat

How long after the four ipi  infusions before testing to see if anything isworking or not

hazel43green

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