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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jamieth29's picture
Replies 21
Last reply 1/9/2016 - 10:33pm

Just wanted to thank everyone here for the immense information and support everyone gives. After being on the braf drugs for about 4 months and using them for as a sort of neo adjuvant I'm going for surgery dec 30th at university of Chicago. I will have a resection of my leg where I've had many intransit spots but confined to about a 4 inch area. I am also laproscopic surgery to my iliac area to clear some lymph nodes out of that area. I had one external iliac node show up on pet and ct enlarged to 18mm. The drugs reduced it to 7mm and that was on my sept ct scan. The spots on my leg also disappeared. Hopefully pathology shows necrotic tissue. I'm nervous to say the least but also know i have to get through this and see what happens. The plan is to stop drugs after surgery and see if it comes back. I am going to look for some kind of trial. Not sure what yet but might be a vaccine trial. The last four months have been almost normal going back to my carpentry job and having 0 side effects from drugs. I'm really nervous about lymphedema but if i get it i will cross that bridge when i get there. Also nervous for the kids seeing me in the hospital again. I will be inpatient for a full week through new years so that sucks. Be kind of interesting to see how this approach works. Doctor says i will still be stage 3c after surgery and if all goes according to plan 3c ned so finding a trial will be a challenge. I do believe right now the drugs have rendered me ned. Anyway have a beer for me on new years. Hope everyone enjoyed Christmas. I'll update with path results after i get motivated after this surgery. Doctors are saying 6-8 weeks till I'm fully recovered so I'm setting my sights on 5 weeks just cause i like proving something to myself. Take care everyone.
Jamie

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Scooby123's picture
Replies 7
Last reply 12/29/2015 - 11:12am

Hi everyone first I would like to wish all of you a Merry Christmas. Hoping we can forget this horrible disease for a few days.

After the sadly pass of Artie I seem to have felt so down and then another one of our family friends young lady with children has too passed away with cancer. She battled ten years god bless her. I just feel so sad and cannot stop thinking of what next.

my tumours are in my liver, lungs  3 in liver 1 in each lung and I believe in lymph nodes , been on ippi with good results had scan results still no change stable no activity in brain. Was going today Christmas Eve to get results but my consultant kindly called me yesterday with results. I am so pleased for that but feel sad. I am braf negative so not got much choice in treatments so glad ipi worked. I do not understand that they will not give me maintance dose of ipi if it worked well . I was told PD1 next but due to me not having much choice why not give me top up of ippi . People who did well on trials on ippi got top up of treatment and did very well. Feel like it is all to do with cost of treatment here in Uk not that am young and healthy at moment to take more treatment so why not give it. I had not much side effects apart from itchy and bowle movements but not too bad.

well sorry for the moan but just feeling like this at present, am still working and doing things as normal 

Love too you all and God Bless us xx

scooby❤️❤️

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/23/2015 - 11:04pm
Replies by: Janner

I'm 20 years old and have pretty dreadful anxiety about my health which really stresses me out. A couple of weeks ago I noticed a mole on my thigh that I thought looked weird, it was a bit lumpy and itched from time to time. I went to see a doctor who inspected it closely and said it looked harmles, but to come back if it changes or starts to hurt or bleed at all. Fine! Problem solved!

Except, yesterday, I remembered a mole on the back of my 18 year old brother's neck, which is a bit large. It's not colossal or anything, perhaps marginally bigger than the pencil eraser which seems to get mentioned as a good reference point. But, still, it's freaked me out. It looks completely normal apart from that, in terms of colour and symmetry and what have you, and obviously it's not my body so I can't say whether he's feeling any itching or pain with it. I know this isn't the place for a diagnosis, but should I be so panicked? Because right now I am so so panicked. I feel like on the one hand, it would be a bizarre coincidence if I got so terrified of skin cancer, turned out not to have it, but then two weeks later found out my brother did all along; it seems more likely that the fear is still gnawing at me and making me get too agitated about a normal thing. But, also, if a mole's bigger than a pencil eraser, you have to get it checked out, don't you? Even if it's only slightly bigger? So, should I point out to him that he should get checked? I don't think he even knows what a melanoma is, so I feel like it's my responsibility, but equally, I don't want to come off as a paranoid weirdo who orders him off to the doctor for no reason. I shouldn't be getting so distressed about this...

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Lucky242's picture
Replies 5
Last reply 12/25/2015 - 7:56pm
Replies by: Patina, Lucky242, Bubbles

Forum - does anyone have advice on combining immunotherapy with BRAF/mek pills? 

Brief background: my mom was diagnosed with brain & body mets Oct 2014. She was on the Taf/Mek combo for 6 months and Taf alone for a further 6 months. Targeted therapy was a great success, reducing tumors in body & brain significantly. The therapy was reduced to half a dose of Tafinlar, when she was put on nivolumab 6 months ago. In Nov, her onc stopped BRAF/mek and added ipilimumab to the mix, when scans showed activity in her lymphs. He has confirmed that she is essentially on the ipi/nivo combo as both immunos are in her system. Her second infusion of ipilimumab was last Thurs (Dec 17th). Since starting ipi, we have seen drastic and consistent rise in LDH. 

Yesterday, my mom had pleural effusion and a trip to the ER produced a new set of CTs, which showed new tumors in brain and body. We were told by hospital doctors that the situation is serious.

Tomorrow, we meet with her onc in charge (a great melanoma specialist). As a family, we question if its too soon to call the verdict on ipi working/not working. My dad has a gut feeling that a second-go on targeted therapy can kick melanoma butt again, as the disease never progressed when mek was included in the picture.

In a perfect world, we continue with ipi treatments 3 & 4 and add in some BRAF/meks. Her onc has warned us of the toxicity of combining this many treatments...does anyone have experience with resuming targeted therapy after progression on them? And in conjunction with multiple immunotherapies in the body? ANY input, whether it's links to articles, personal experiences, would be invaluable, on evidence of combining ipi/nivo combo with BRAF/mek inhibitors. 

THANK YOU (and happy holidays!) 

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Eileensulliv's picture
Replies 15
Last reply 1/8/2016 - 9:14pm

At my appointment last week, my doctor said my latest CT scans were better than stable... He said the nodule in my lung is so much less conspicuous that it is opaque and hardly noticeable... Confident the cancer is gone, and the same goes for the cancer that was in nodes in my mesenteric bowel... The nodes are all back to normal size if not even a bit smaller than normal. He said this was an excellent scan and that he is confident in saying there is no evidence of disease! 

So the plan is to continue on nivo, complete the two years (March 2017!). Some have said the full two years isn't necessary, but if it helps with a durable, longer lasting response, I certainly don't mind the treatments! I still work 40 hours/week, and live my life with minimal side effects! 

Needless to say, I couldn't be happier right now! I'm so thrilled... Christmas came early for me this year!

On a side note, I will be participating in the Advocacy and Summit Hill day for the MRF in March. Will I have the pleasure of meeting any of you in DC in March?

Eileen 

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/25/2015 - 12:40am
Replies by: Lil0909, Anonymous, mjanssentx

I had lymph nodes removed from armpit. All negative with tissues negative too. This was done Dec 2. For the past few days ive developed redness and seems like a bulge under my armpit that hurts when it is touched. I went to the doctor and he said it is fluid and that I have a small infection. He prescribed me antibiotics and have been taking them since monday afternoon. He said if it doesnt go down by monday he will numb and drain it. Anyone know what this pain can be? ANON

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/23/2015 - 5:44pm
Replies by: casagrayson

I'm a little behind but your post caught my eye. I had a persistent cough with no diagnosis last winter. It happened following a mild respiratory infection. I was diagnosed with Laryngo/pharynx reflux. I would cough up clear frothy sticky mucus by the tons and always had a rattle in my throat. Another symptom classic to LPR is the feeling of a glob of mucus at back of throat at all times. It cannot be diagnosed by typical imaging. An ENT can perform an exam to diagnosis. It has none of the classic symptoms of reflux such as heartburn, burning in esophagus etc. Google LPR Laryngopharyngeal reflux or silent reflux Hope this helps.

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Anonymous's picture
Anonymous
Replies 0

I'm a little behind but your post caught my eye. I had a persistent cough with no diagnosis last winter. It happened following a mild respiratory infection. I was diagnosed with Laryngo/pharynx reflux. I would cough up clear frothy sticky mucus by the tons and always had a rattle in my throat. Another symptom classic to LPR is the feeling of a glob of mucus at back of throat at all times. It cannot be diagnosed by typical imaging. An ENT can perform an exam to diagnosis. It has none of the classic symptoms of reflux such as heartburn, burning in esophagus etc. Google LPR Laryngopharyngeal reflux or silent reflux Hope this helps.

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/23/2015 - 11:05am
Replies by: Toby0987, Anonymous

I was told my Thyroid was "full" by ENT. Had an ultrasound today and technician said she could tell me exactly what was what,  instead of waiting for ENT. She said my thyroid was normal but had 8mm nodule that they would watch for a year. I said, so it can't be melanoma, she said " Oh no, melanoma is only on your skin" ! What the what! I am 3b, mitosis 18, ulcerated. Any thoughts?  I'm thinking of dropping all med appts and follow ups, I'm sick of the hype to find out it's nothing over and over again.

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/6/2016 - 6:37pm
Replies by: Anonymous, Scooby123, Mat

I have liver mets and am on Keytruda for five months now.

My blood work for liver and LDH etc is normal but just lately i have noticed my liver is tender in the mornings and i can sort of feel activity going on there. Sometimes i feel a sharp twinge as well.

Is this consistent with worsening liver disease? What can i expect if things get worse?

Are their any treatment possibilites. I am due for a PET scan next month but already feel like things are spiralling out of control.

 

 

 

 

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AshleyS's picture
Replies 1
Last reply 12/22/2015 - 11:50am
Replies by: geriakt

Ugh...I have had a day full of nausea, stomach cramps, and diarrhea. This is the part I hate about cancer...I keep trying to guess if I'm sick, if it's side effects (I'm on Opdivo), or if it's some kind of bad sign that my melanoma is spreading/re-growing, 

In April I was kicked off the Ipi/Nivo trial after 3 infusions. At the end of May I had a single dose of ipi. Since June I've been on Opdivo. I had lots of gastro issues until the middle of September, but they cleared up. I am on meds for hypothyroidism as a result of the drugs. In November, I learned I'm NED.

Has anyone else had side effects return after disappearing? 

I could be jumping the gun - I have lots of exposure to germs, church, hospital, 2 kids in daycare when I'm at treatment or sub, and a husband who is an elementary teacher. 

I'd appreciate any thoughts!

Ashley

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mireillep's picture
Replies 1
Last reply 1/8/2016 - 9:06pm
Replies by: sayres

İ am a 74-year old female.The malignant melanoma on my ear(in 2013)metastasised atypically and İ have undergone successful surgery on my breasts followed by 4 months of Tafinlar 75mg which eliminated a small tumour on my lung.The side-effects have been severe with mainly hair loss and strong back pain on my right shoulder blade and upper right arm and thickening of the skin under my feet.İ have to remain on Tafinlar for 3 more months at 150mg daily.What İ want to know whether anyone has experienced similar side effects.Has your hair grown back and has the back pain disappeared?

Did the treatment work?

Mireille


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mkirkland's picture
Replies 17
Last reply 12/22/2015 - 8:55pm

Well the day is here. I will get first round of Yervoy today. To say that I am scared would be an understatement! Lol any extra prayers would be appreciated! Thanks everyone!! 

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eemmiillyy's picture
Replies 1
Last reply 12/22/2015 - 11:32am
Replies by: Janner

Hi everyone,

I was diagnosed with melanoma in situ when I was 18 years old (back in 2012). The little spot looked like a very irregular freckle that had multiple colors and was growing quickly. I found it on on my own, and the derm did a biopsy then a WLE a week later. The scar is ~3in. long, and the stitches ripped during healing so the center is also about the size/width of a quarter.

I know there's a pretty low chance for reoccurrence following a WLE on such an early stage of the disease, but today I noticed a new freckle right in the middle of the scar. I look at the scar in the tub fairly often, so I know it's new... And this is how and where the last one started.

Is this something I should be worried about? Do any of you have experience with in-scar reoccurrences? Especially with in situ levels?

Thank you!
-Emily

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/26/2015 - 8:53pm
Replies by: Anonymous, tapsisarkar, Janner

Hello everyone,

I have had my skin checked recently and had a couple of biopsies done which came back medium Atypical.  I'm not so sure my doctor looked very carefully at my back, as it doesn have heaps of moles like my legs do, just lots of little freckles.  Anyway, I've been aware of a little growth that I could feel that was hidden under my bra strap, which has been growing. When the doctor checked me it was under my bra and she didn't look under it, so today I remembered it and got my husband to take a photo (in the Google Drive link below).  He said there was a larger one near it, that I didn't know what there, which has pigmentation on the left hand side.  The one I can feel has no colour, is just a raised oval area. 

I've taken a photo of both next to a ruler (in centimeters as I live in Australia) and wondered if i should go back and ask my doctor to look at them and perhaps a biopsy?  I'm aware that this is not a place to seek diagnosis, so I am interested in thoughts and suggestions please.  I'm 48, so perhaps these types of growths is just an age thing.  Thanks for your time. I would love your thoughts please?

https://drive.google.com/file/d/0B__F_Ob7Tx3EeDBjWTc2OFNtMGc/view?usp=sharing

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