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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Anonymous's picture
Anonymous
Replies 4
Last reply 8/5/2016 - 10:55am
Replies by: momof4boys, slh4448, BrianP

Folks!

 

any thoughts on clinical trials ?

- How can you find one?

- Should be worried about joining one?

Anyone joined a CT before?

 

Thanks

Karim Galil, MD

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Kare83's picture
Replies 4
Last reply 8/14/2016 - 4:03am
Replies by: Kare83, gazzz, JoshF

On my initial path report it says

"There is a moderate lymphocytic inflammatory infiltrate, consistent with a component of regression."

Looking up regression, from what I can tell this is good as it  means the immune system had identified the malignant cells as bad and go about destroying them, right?

Although I have stumbled across a page to help understand Melanoma Path reports and it says that regression can make it hard to work out how extensive the Melanoma was before regression occured. 

Also.. it was a very thin Melanoma, I know, but it states that there was focal invasion of the papillary dermis (0.40mm breslow), and in the wider excision got everything though I am slightly freaking out thinking about blood vessels and things that could help it travel... Is this why they say it can turn up in the lymph nodes later on? Because no one can really be sure if they got it all out?

I feel so bad I shouldn't be falling apart over this when others are really fighting this disease and I hope I am no offending anyone but I just have these bouts of anxiety over it that I can't control. Some days I am fine and others I just lose it! I guess the main positive is that it has made me very aware of covering up moreso and looking after my skin... carrying out monthly skin checks and taking photos of moles to monitor change. I just hate what it does to you mentally!

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Ajwells's picture
Replies 5
Last reply 8/4/2016 - 4:10am

I read a lot about Yervoy on this forum. I see mostly "I didn't have any side effects" or "my side effects didn't start until the 3rd infusion". 

To be upfront this is adjuvant treatment.  And a lot of what I could find are older articles from like 2011 during clinical trials  

As I lay here a week after my first infusion SO tired. Bone tired. I have yet to make it through a 4 hour shift at work. 

I looked up drug interactions because I'm on a lot of psych meds (Lamictal, Effexor, Buspar, Trazodone) and I didn't find anything, I guess I should trust my oncologist to know. 

I'm trying to eat healthy, drink plenty of water. My appitite is decreased, but it has been decreased for long before the melanoma came along. 

I feel like a pansy. How am I going to take the rest of the treatments when I'm already over it?  I can't take care of 3 kids, work my job, and feel sick all of the time. 

I made the choice along with my doctor to do the treatment because cancer and recurrence run rampant in my family and I'm too damn young and have too much to live for to play games. So I've got to either figure out what to do to deal with the side effects or I need to get less on my plate. 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/2/2016 - 7:48pm
Replies by: Anonymous, Polymath

I was diagnosed in March with stage 4 melanoma to the lymph nodes, stomach, bone and lungs.  I have done 3 ipi-nivo treatments and 1 nivo treatment.  I didn't get all four of the ipi-nivo combo because the side effects were too severe. My last treatment was on July 1st and that was the nivo only treatment. Since then I have been on steroids for colitis.  I'm not sure when my next treatment will be but oncologist hopes it will be soon. My last PET scan on July 13th showed almost a complete response.  There are still tumors left but they are so small they don't show up on the scan.  The lump under my left armpit is not gone completely but has shrunken a lot. The oncologist told me its probably dead tissue. What I'm wondering is that once the treatment is complete, do they remove the lymph nodes where the cancer first spread too? Or is this something they only do when someone is stage 3? I'm just not sure how much more the one under my arm is going to shrink.  Just a little confused.

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Sflynn's picture
Replies 1
Last reply 8/1/2016 - 7:03pm
Replies by: Lee Parlier

Well.. My update to my last post is not how I thought it would be.. My husband tried a second round of Taf/Mek after it failing the 1st time. He made it 12 weeks this time. He had a repeat MRI and catscan After having to take him to the e.r. For severe head and ear pain. He was admitted due to complications to the progression of the disease. Even on treatment he developed new brain mets, total of 18 now. Ranging in size 10mm all the way up to 3x3cm and is starting to invade the dura on his right temporal lobe..All mets now have started all to hemorrhage. An increase in steroids and anti seizure meds seem to be doing nothing!! Docs are not hopeful being that he is almost 1 year diagnosed. This disease is horrible!!! 

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I feel good about having the chance to speak with my father's melanoma specialist face-to-face while visiting in Europe. The conversation went pretty well I thought.

A bit of a background. My father was diagnosed with Stage 3C back in January. He had seizures few weeks ago and they found 13 brain Mets ranging from 2 millimeters to 13 millimeters in size.

He finished two weeks of WBR and is feeling pretty well as of now. He is still on steroids and anti-seizure medication.

After talking to the doctor and telling her my opinion it seems her plan of action is to do a CT with contrast
to see how the tumors reacted to the radiation. She said if he had a good response they might consider doing stereo active radiation if there are spots left, followed by immunotherapy. If the response was not so great she prefers to start him on the BRAF inhibitors.

Seems she would preferred to keep the Inhibitors in our back pocket should we need them later. She feels if he is stable to get going with immunotherapy since it takes a while to kick in. If he progresses she would switch to the inhibitors.

I feel pretty good about this plan. What do you guys think? Any and all opinions, criticisms, agreements are welcome!

Thank you!!

Annie

Ps. I went to the dermatologist today and had my first ever skin check. I seriously thought I was going to have a panic attack right there in the office. They took one mole off my back, the doctor said the worst it would be is atypical. I feel very fortunate.

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sscottmusic's picture
Replies 5
Last reply 8/2/2016 - 7:58am
Replies by: stars, Anonymous, jennunicorn, Andrew1725

My first mm was in 2004. 3 weeks ago they found a 3rd. What does this mean for my future. 

Stan

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Replies by: fleurdelis82, Janner

Back in early November 2015 my boyfriend pointed at a weird mole on my waist. A mole had suspicious darker spot in the middle. The area around the mole also looked irritated so it was possible that the irritation and scabbing was from clothing (I recently botught a new pair of jeans and a tag rubbed right where the mole was). However, I made an appointment to check the mole out ASAP. While waiting, I subconsqiously scratched the mole (I am a scratcher) so by my appt the mole had a scab from scratching on top of it. The dermatologist did a shave biopsy (removed the whole thing and some margin of healthy skin around it) which turned out as a "traumatized benign compound nevus". The area healed fine and now there is a scar. There is a slightly brownish area in the center where the mole used to be but nothing suspicious. 

Recently, I have been worried that if that darker spot on the mole was a very early melanoma, my scratching could have removed most of it so that it wasn't detected on pathology. And now these few cancerous cells that were left will grow undetected until the disease is advanced. These thoughts are causing me a great deal of distress. 

Can anyone please help me understand if this is a valid concern or not? Thanks in advance for your help!

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/1/2016 - 8:52am
Replies by: Anonymous

Hi! 
Zelboraf helped for lung (2.5x3cm SUV max 24.3) and left armpit (2.2x2.7cm SUV max 38,7) metastasis and they are gone (we think so), but in right armpit (2.6x2.5cm SUV max36.8) it is g almoust half size bigger. Dr. sugested Roferon A (interferon) + zelboraf. Is it ok or better switch to another treatment (to which)?

Thank you.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/31/2016 - 9:05pm
Replies by: landlover

I am stage IIIa.  I was diagnosed in January 2016 with a 1.5mm melamona on my left ear, no ulceration, 4/sq mm mitotic rate.  I had surgery March 22, 2016 to excise the melamona and complete a SLNB.  2 of the 7 nodes were positive for micrometastatsis melanoma.   I then had a paratidectomy and CNLD on the left side of my neck.  All 54 lymph nodes were negative.  Recent CT scans and Pet Scans were negative.  

Since the CNLD in May,  I still cannot raise my left arm above 90 degrees to the side.  I'm doing daily stretching and exercises but haven't seen a lot of progress.   In addition, my smiile is lobsided as my left lower lip is impaired.  However, this seems to be getting better.

Does anyone have advice for these symptoms? 

My surgeon said the nerves were spared during surgery but were stretched and this weakness in normal.  However he didn't give me a recovery time.

As for next steps, I'm waiting to hear whether I'm eligible for a clinical trial comparing Keytruda to High Dose Interferon.  If I don't do the trial my options are high dose intereferon or watch and wait.  Ipi is not approved in Canada for stage III.

Any thoughts on next steps?

 

Thanks,
​Stacie

 

 

 

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Shaneswife's picture
Replies 13
Last reply 8/1/2016 - 12:09pm

My husband is having a right groin CNLD and I was wondering if he will need crutches to get around after? I want to order them from the health care store but wanted to ask first if any of you needed them after.

Thanks in advance.

Janis

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Everymoment's picture
Replies 2
Last reply 7/31/2016 - 5:04am
Replies by: Anonymous, Janner

Hi,
I'm starting to realize the role genes play in our future. After having melanoma four times and having a breast cancer scare it got me thinking...by having melanoma are we predisposed to other specific cancers?
Thank you.

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Ace226's picture
Replies 10
Last reply 8/3/2016 - 1:09am
Replies by: kylez, Ace226, eric w, Mat, Casitas1

Hi Everyone,

 My dad has been doing well with metastatic melanoma for several years now but they told him that it now looks like leptomeningeal metastases which we are all very worried about CSF was negative and he doesn't have side effects of LM which is encouraging. 

 The doctors tried the Ipi/nivo combo (he had Ipi 2 yrs ago and was on opdivo for 8 wks this year)  but with in three weeks he started vomiting and having diarrhea now he has been in the hospital for one week and they are having trouble getting the diarrhea and vomiting under control. They say he has colitis. Has anyone had a side effect of vomiting from yervoy or this combo?  Tomorrow they may try Remicade if things don't get better today.

 I am very worried about him just wanted advice on if anyone had experience the similar side effects. And how they were treated  

 Also if anyone knows about better treatments for LM let me know. 

Thank you!!

 

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Anonymous's picture
Replies 4
Last reply 7/31/2016 - 10:03am
Replies by: Anonymous, Everymoment, Esmith123

Hi, my name is Emily. I'm 23 years old and when I was a lot younger, I made the foolish decision to start using tanning beds. I haven't for a few years, but since I stopped I've been keeping a close eye on my skin. I'm currently feeling helpless. I keep seeing spots on my body, all under 2 mm. My GP will not refer me to a dermatologist unless a spot is 6 mm. I have told him about my tanning history, and he told me that it's rare to get melanoma at my age even after my use of tanning beds. But when I read online it says otherwise and now I feel completely doomed that suffering from melanoma is my fate. Can a spot that's 2mm be deadly? I'm in Canada and to see a specialist you have to get a doctor referral to get in to see a dermatologist. Should I be concerned about anything under 2mm? If I have melanoma, I want to catch it early and do what everything says online is to get skin cancer screenings but my doctor won't help me. What should I do? 

thank you in advance.. You all sound like lovely people on this site... 

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Ddw's picture
Replies 7
Last reply 7/30/2016 - 1:11am
Replies by: Anonymous, MoiraM, Janner, Ddw

I just had a wide excision surgery on my heel. And they removed two groin lymph nodes and I'm waiting on pathology. So far the only information I had from shave biopsy it was a clarks level 3 with not clear margins. This is so different from breast cancer that I just finished chemo for in march. I have tripple positive breast cancer which means all hormone driven plus her 2 positive. I don't know if the two cancers cross in any way. When they put the radioactive tracer in me my groin lit up and also my neck which I don't understand. With my breast cancer I had a small tumor but it had already spread to my lymph node. I'm so confuse. If anyone could help I would appreciate it. I had the black spot on my foot for years my breast cancer oncologist told me we would worry about it later.

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