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 20
Last reply 2/7/2016 - 6:05pm

Went in today for scan results and brain mri showed 3 spots. Two 3mm and one 4mm. The doctor wants to wait two weeks and do another mri to make sure they are mets as he said he's not convinced they are. They were not present on mri in June said there is no edema for whatever that's worth. I have a appointment with radiologist Monday. The body pet/ct was clear. The doctor wants me to go ahead and start nivo next week. He said i shouldn't do anything until we repeat scan. Don't know what else they could be...to me it was pretty cut and dried they didn't show in June and are now present so...advice? Could hardly be around kids when i got home so scared that the kids will have to watch this play out.

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jc0709's picture
Replies 1
Last reply 2/5/2016 - 12:51pm
Replies by: casagrayson

Hi everyone,

Firstly, sending my very best wishes to everyone here who is fighting their own battle.

I'm Jen. I have been browsing this forum for a couple of weeks but feel now I would like to introduce myself in the hopes of finding support from others going through similar. Sadly, we have a lot of history of cancer in our family but no skin cancer as yet, so it helps to be amongst others who can relate.

I had an excisional biopsy yesterday on my 4th left toe, for a suspicious mole to be removed. I have known for years about a small freckle-like mark in this place, but in recent months I took a closer look and my husband agreed it needed checking out. It has increased in size, raised from the skin, and changed in appearance quite significantly. Not sure about everyone else, but between my toes is certainly not a place I look at much!!

It is now 6-7mm, a mixture of colours, with a dark network when you look closely, pinky areas, dots, lines. Very different compared to my other freckles and moles (I have quite a lot).

I saw my GP in December who did an urgent referral, saw Dermatologist on Christmas eve, then plastic surgeon in Jan, followed by surgery yesterday. All the people I've seen so far haven't said much about it, just that it has concerning features and needs to be excised. Makes me worry more that it can only be one thing due to the lack of discussion. Surgeon said up to two weeks for results, and I am booked for a follow up appointment on 24th Feb.

I am in a lot of pain today, but it's nothing compared to the worry and anxiousness I am feeling.

I'm not expecting a great amount back, as I'm sure its quite an unusual place to have a mole removed from! Just wondered if anyone may be experiencing similar, and how you all cope with waiting for results?

Kind regards

Jen

Jen

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jennunicorn's picture
Replies 21
Last reply 2/8/2016 - 12:16pm

Does anyone have a great sunscreen they use every day that doesn't feel like they are wearing sunscreen? It feels like a neverending search for the right one. I have sport ones for when I am more active and don't care if I feel like I am wearing sunscreen. And I have face moisturizer with sunscreen in it that I like. But, finding that one for the whole body for just regular every day use seems difficult. I also hate the smell of most sunscreens. My derm recommended EltaMD sunscreens.. they are kind of expensive, not too bad, but before I go buying some, if anyone has tried it, do you like it for every day?

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Azcaddyman's picture
Replies 4
Last reply 2/5/2016 - 9:56am
Replies by: Anonymous, Azcaddyman, Janner, gregor913

OK here's a quick summary of what's going on

 

I went to my dermatologist to have a large lesion on my neck looked at. Although I was convinced it was melanoma, he insisted I was wrong. He suspected it was a bcc. He did a small shave biopsy. The pathology report showed ssm at least .60mm deep. No mitosis, nothing unusual except regressive changes at the base of the biopsy. I was referred to a surgical oncologist. Because we didn't know the actual depth I was scheduled for a slnb and wle. I went in for my procedure about 3 weeks ago. The lymph node biopsy failed. They couldn't get the radioactive tracer to drain into the lymph system. My surgeon did remove some tissue that showed some pickup of the dye but wasn't sure it was even a lymph node. 

Last week I went in for a post op follow up. The pathology report from the wle/slnb showed that the tissue was not a lymph node. Although it was cancer free. The "residual" melanoma was .8mm deep. No mitosis. Stage 1a. I was told at that point that since my tumor wasn't deep enough no further testing would take place. 

Now OK I understand how this works, you can't add the first biopsy to the final excision to determine depth. So this means my true staging info was lost because my dermatologist didn't do the right thing. However, is this important? At first they wanted to do a slnb but when that failed, is it OK to just say I'm OK? Would I be crazy to ask for an ultrasound study of my lymph nodes? My Dr assures me that the chances of spread are so low that there's no need to be concerned. So should I just relax? I get my stitches out next week. That will probably be my last appointment and after that I'm on my own. 

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karima49's picture
Replies 3
Last reply 2/5/2016 - 9:59am
Replies by: Anonymous, marta010, Scooby123

My mother was diagnosed with Stage 4 in December 2015. She has been on the Mekinist/Tefnlar combo for about a month now. She has had a major problem with nausea and vomitting. She went to DR 2/1/16. She is now to cut dosage in half. Once in morning and once at night instead of twice in morning and twice at night. It seems to be doing a little better but she is still just so weak. She can only do something for about 10 minutes and then she needs to rest. Is anyone else experiencing this and is there anything helping you? She has lost 23 within about 2 months. They want her to eat more to see if that helps get some strength back. Please help with any suggestions. Thank you. 

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Momofjake's picture
Replies 16
Last reply 2/6/2016 - 7:02pm

Hi my friends,

i have had a hard time getting on here since Artie. But I need a little advice. Jake has been on keytruda and a bone strengthener for almost 8 mo now. The first scan showed big improvement and the visible tumors shrank completely. Then Jake moved 15 min from home to try a light semester of college. He shared a room w his brother:) So glad he went! But next scan no shrinkage and it grew. 2 worst new mets--throat and rectum. All internal tumors remained--liver, lungs, spine, bones, sinus...he has normal side effects w white eyebrows, white side burns, some vitaligo and occasional mild rash that doesn't bother him and of course fatigue. 

So...now he hasn't been out of his bed in 3 days. Today will be 4. It's been 10 days since treatment. He has severe aches and now a fever. Loss of appetite and now a little nausea. His last blood work showed his kidney numbers weren't great, liver struggling a little and tumor marker up again. Before this he has been very active. Fatigue though. He has moved back home to focus on his body. It's all he does 24/7. Sleep a lot, eat crazy healthy, try to gain weight, gym. He does nothing else and all his friends are gone. It's hard to watch. 

I do all I can for him. k. Day 4 or more in bed. TIME TO SEE THE DOCTOR??? He says it feels like flu and doesn't want to go in. 

Oh how I hate the decisions....so many decisions. 

Thanks for getting thru the novel. 

Prayers and love to you all who are in this!

Kerri--mom of Jake

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greatladywilson's picture
Replies 2
Last reply 2/4/2016 - 8:29am
Replies by: chrisholder, Momofjake

Anyone with the diagnosis of sinus mucosal melanoma?  2 years out but having lots of issues.  Am I alone? 

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gregor913's picture
Replies 12
Last reply 2/6/2016 - 6:06pm

Hey everyone so I finished my second dosing of ippi and have my 3rd scheduled for Feb 15. Right now my oncologist has me scheduled for 4 doses total of the 10mg/kg. If everything goes well after all 4 doses here is my next question. I was reading the yervoy website for preventive care and it says that you should have the 4 initial doses then every 12 weeks for 3 years maintenance doses.

Was just wondering the people who are taking ippi right now if there onc has them scheduled for the maintenance doses because mine does not. Do you need the maintenance doses?

thanks Greg

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Anonymous's picture
Anonymous
Replies 15
Last reply 2/7/2016 - 4:47am

What would be a worse prognosis for stage 3. Having a ulcerated melanoma with micromets or having a macro node without ulceration. Just curious anon

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Anonymous's picture
Anonymous
Replies 0

Join 2000 patients and caregivers for a great/fun event!  Go to  http://melanomainternational.org/

 
 

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Tessie64's picture
Replies 3
Last reply 2/8/2016 - 7:43pm
Replies by: ashley_K, Janner

I had a biopsy on my toe about six weeks ago, which came back as moderately atypical. I actually go tomorrow for further excision. But over the last 2 days, there has been a black growth developing on the punch biopsy sight. It's already as large as the original mole (5 mm). Could previously missed cells develop that quickly to melanoma?

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Totally Blessed's picture
Replies 2
Last reply 2/3/2016 - 12:30am
Replies by: ldub, Totally Blessed

My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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Nanners10's picture
Replies 3
Last reply 2/2/2016 - 7:02pm
Replies by: WithinMySkin, Anonymous, Nanners10

Hi all,

Just looking for any advice that anyone can give. I had a CT scan (was experiencing some chest pain) and the results were so obscure. My dr. wants to follow up with a pet scan or another CT scan in a couple of months to see the difference. He didn't really go into details as to what causes (other than melanoma) these items and I was wondering if anyone has run into these before and if they turned out to be something or nothing. I know that maybe I am not giving enough info but don't have a copy of my scan yet but am stressing out. The terminology in question is:

-thickening of the pleural wall on the right side 

-abdominal stranding between the liver and the kidney

I haven't ever even heard of abdominal stranding and don't know how or what it relates to. Can't seem to find much on a google search either.

They are both listed as incidental findings as the scan did not include the whole abdominal/pelvic area it was mainly a scan on the lungs.

Any thoughts would be greatly appreciated. I know that another test is the only definitive way to determine what's going on but we all spend enough time obsessing over our reports that I thought this would be worth a try.

Thanks,

Nancy

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MoiraM's picture
Replies 15
Last reply 2/7/2016 - 9:17am

I went down the Ipi route for treatment of my Stage III melanoma. Good news is I am a responder and, six months later, the tumours in my lymph nodes have shrunk so that they can no longer be distinguished using a CT scan. (Bad news is that I have ended up with damage to my anterior pituitary gland that is probably permanent.)

My specialist has shown me a graph that appears to show that if I make it to three years then I am likely to make it to ten but she cannot answer my question, which is What proportion of 'Ipi responders' make it to the three year milestone without a reoccurence?

Has anyone got an answer to this question? Or any other relevant information (maybe like a link to a useful research paper).

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals

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