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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Jewel's picture
Replies 3
Last reply 10/4/2014 - 12:17am
Replies by: Janner, Squash, Teochasse

My husband had a clnd in his left groin in 2011. His lastest scan is showing a hot node in his pelvis. If this turns out to be melanoma would that take him from stage 3 to 4? We find out Monday.

Thank you

Jewel

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JoshF's picture
Replies 3
Last reply 10/3/2014 - 8:39pm

So got preliminary scan results...there was some "fuzziness" in right lung but my oncolgist said it wasn't concerning for malignancy as lung nodules don't present themselves in that manner. Not to mention that I was on a Z Pack for sinus related issues last week. I was told that this is not uncommon in what they see in scans because basically you "see everything". Any thoughts?

Still has me nervous but things can always be worse...so I won't complain much. Bloodwork amd everything else was normal...thyroid meds are finally working after ipi took that out last winter. Overall feeling good and praying to remain NED and that many others join the ranks of NED....praying for you all!

 

Josh

Let's work for better treatments....for a cure!!!!

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Invented by Array BioPharma Inc. and licensed to Novartis in 2010, binimetinib is a small molecule selective inhibitor of the kinases MEK1 and MEK2.  
 

Results from the 117 patient Phase 2 study showed median progression free survival (mPFS) of 3.6 months and objective response rate (ORR) of 14.5%, including one patient who achieved a complete response.  These findings were consistent with previously disclosed interim results at the American Society of Clinical Oncology 2012 annual meeting.  In addition, the median overall survival (mOS) of 12.2 months is encouraging for this patient population, which has a particularly poor prognosis.  NEMO, a global phase 3 trial currently enrolling patients with NRAS mutant melanoma, is designed to measure the difference in PFS between patients treated with binimetinib versus those treated with dacarbazine, a current standard of care.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/3/2014 - 4:31pm
Replies by: JerryfromFauq, Anonymous, Janner

Ok, this is going to be a long story, and probably confusing. I have been reading on these forums for a couple of weeks and everyone seems so kind and knowledgeable. I don't think my questions can really be answered, I think I just need to let some stuff out and see if anyone has had a similar situation. 

 
A couple of months ago I noticed that I had a swollen lymph node under my left ear. I wasn't too worried about it because I had been really tired and getting dizzy spells so I figured I just had some type of virus. After a couple of weeks it was still there and I was still feeling feeling sleepy I made a drs appt. It had been awhile since I had a general check up so I made an appointment with a new doctor. I go to the gynecologist yearly, but can't remember the last time I went to a gp. 
 
Anyhow, while I was there I showed her a mole on my right forearm that was really odd looking. Over the summer it had developed a black spot. I also showed her a large bump on my left shoulder. She said it was a cyst but did not want to do anything until a dermatologist looked at it. She confirmed that it was a swollen lymph node under my ear but wasn't to worried about it. I also told her about a  fibroadenoma in my left breast that my gynecologist had found about a year and a half a ago. At the time that my Gyno had found the lump I was also having clear nipple discharge. So my Gyno sent me for diagnostic ultrasound and mammogram and had bloodwork to check my prolactin levels. My prolactin levels came back normal. They said the lump was a fibroadenoma and that the discharge was physiological. I have had to go to the breast health center twice for them to check for changes and if no more changes at next appt I won't have to go back. I still have the nipple discharge. 
 
After telling my gp about the boob situation she had no idea why my hormone levels weren't checked. So she ordered some bloodwork and referred me to a derm about the mole and cyst. I made an appt for the following week. All of my bloodwork came back normal. 
 
At the dermatologist appt she removed the mole and wanted me to get the cyst removed asap. So they set up an appt for two weeks later for excision. A week later she called back with biopsy results from the mole and it was melanoma in situ. So she set up an appointment for me to get wle on forearm at the same time they removed the cyst. She also had me come in for a full body scan. 
 
So this past Monday I had a full body scan and she removed a suspicious mole from the right side of my face. Then later in the afternoon I had wle and cyst removed. After the cyst was removed I asked to see it. It was huge, about the size of an eyeball and white. They prescribed antibiotics and sent me on my way. The cyst was weird, but I never was worried about it.i noticed it about 8 years ago. It was tiny at first, about the size of a bebe on left shoulder. It ended up growing to about half the size of a golf ball and had a head so my old dr had drained it. It went down and just felt like scar tissue. Fast forward to this summer, it came back but was under the skin and solid. 
 
So now I am waiting on lab results from biopsy on right side of face, wle on right forearm and cyst on left shoulder. I thought maybe the antibiotics would have made the lymph node better if it was from a virus, but it still there and rock solid.
 
I wasn't too worried until last night. I woke up with a feeling of dread that the mole, the cyst, the lump in breast and the swollen lymph node are all related. I know worrying won't change the outcome of anything, but I am really curious if it is possible for all of these things to be related. The mole was just melanoma in situ, but is it possible for it to spread? I am hoping to hear from my dr today, but I know it will be a good chance that I won't hear a thing till Monday. I hope I am just a lumpy person! 

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JoshF's picture
Replies 6
Last reply 10/3/2014 - 2:32pm

Well hard to believe it been just over a year since I had recurrence and went to Stage 4. After doing Ipi last Oct- Dec and HD IL-2 in Jan, if this scan comes back clean it'll give me about 7 months of NED. Can you tell I'm nervous? Haven't been able to sleep......only 5 1/2 hours to scan time!!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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I will do my best to make a very long story short. 

I have Melanoma and recently had yet another scare (I had, what I am hoping to have been, a lipoma removed from my back last week - still waiting on path results).  My husband felt the mass on Labor day, it was about 3-4cm in diameter and about an inch or so under my scar from my primary.  Any lump, bump or mass on us people with Melanoma is completely terrifying for obvious reasons.  So, needless to say, this month has basically been mentally hell.

Now a little bit about my husband.  He has low testosterone and gets bi-weekly injections to combat this.  With these injections comes a crazy sex drive.  Let’s connect the dots…

Since my diagnosis a year and a half ago I have not been as ‘frisky’ as I was.  We are married – been together for 10 years – our sex life isn’t what it was like during the first 3 years together.  The most unfortunate side effect from Melanoma has been the constant fear of that nasty beast coming back and as I am sure all of you are aware, that thought never travels too far from view. 

I am already emotionally shut off (which is why I tend to write my feelings – this is why my blog has helped me through this whole shit-show).  I like to joke that I am a phenomenal ‘wall builder’ and essentially use that as a defense mechanism.  During times when I am freaked out about one thing or the other, I close right up like a clam.  Sex can be so far from my thought process – and half the time my husband has been drinking and that doesn’t help the situation either.  We’ve been fighting quite a bit lately about this…our fights can be nasty and he tends to throw out the “D” word (divorce).  It’s exhausting and frustrating and I just wish it would stop.  But just simply wanting it to stop doesn’t “turn me on” – especially when we’re in the middle of one of these nasty arguments. 

My question is how to help this?!  Have you dealt with this and how? 

~(lack of sex)ually frustrated  

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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I will do my best to make a very long story short. 

I have Melanoma and recently had yet another scare (I had, what I am hoping to have been, a lipoma removed from my back last week - still waiting on path results).  My husband felt the mass on Labor day, it was about 3-4cm in diameter and about an inch or so under my scar from my primary.  Any lump, bump or mass on us people with Melanoma is completely terrifying for obvious reasons.  So, needless to say, this month has basically been mentally hell.

Now a little bit about my husband.  He has low testosterone and gets bi-weekly injections to combat this.  With these injections comes a crazy sex drive.  Let’s connect the dots…

Since my diagnosis a year and a half ago I have not been as ‘frisky’ as I was.  We are married – been together for 10 years – our sex life isn’t what it was like during the first 3 years together.  The most unfortunate side effect from Melanoma has been the constant fear of that nasty beast coming back and as I am sure all of you are aware, that thought never travels too far from view. 

I am already emotionally shut off (which is why I tend to write my feelings – this is why my blog has helped me through this whole shit-show).  I like to joke that I am a phenomenal ‘wall builder’ and essentially use that as a defense mechanism.  During times when I am freaked out about one thing or the other, I close right up like a clam.  Sex can be so far from my thought process – and half the time my husband has been drinking and that doesn’t help the situation either.  We’ve been fighting quite a bit lately about this…our fights can be nasty and he tends to throw out the “D” word (divorce).  It’s exhausting and frustrating and I just wish it would stop.  But just simply wanting it to stop doesn’t “turn me on” – especially when we’re in the middle of one of these nasty arguments. 

My question is how to help this?!  Have you dealt with this and how? 

~(lack of sex)ually frustrated  

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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oldblue's picture
Replies 7
Last reply 10/3/2014 - 12:33pm
Replies by: Ginger8888, Squash, DZnDef, oldblue, ecc26, Anonymous

 

Hi all,

I recently read the avemar research and was surprised that most of it was never followed up with larger studies or trials over longer time in the west. Most fowhat I read came from Russia or Hungary. Maybe there is more research but I haven't found it.

I'm also awareof a clinical trial currently recruiting for high dose vitamin D supplements for those at stage 3 - at least it is in Australia.

Is anyone aware of any other alternative options out there? I am interested in it as an adjunct to more formal treatment regimens as long as it doesn't interfere with them.

Or,is there a website that has them?

Thank you,

Nigel.

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adriana cooper's picture
Replies 2
Last reply 10/3/2014 - 11:01am

I go in for my scans on Oct 6th I will find out the next day what the results are. I do love Seattle Cancer Care. I will be 16 weeks out from my first IPI infusion, only made it thru 3 infusions. My body attacked itself more or less, extreme pain and joint swelling walking with a cane for a short time, and every symptom that came with IPI I got. With the help from my rheumatologist who has put me back on prednisone, I know its not the preferred medicine, but as of now I am not in pain. I will soon find out if my lung mets are still there. The recurrence in my arm is still making it presence known. I hate the hurry up and wait game but that all we do when we have cancer. But thanks to my wonderful boyfriend who is always there for me I am holding strong at stage 4 and I will win this battle. Good luck to all of you.

Adriana

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Anonymous's picture
Replies 1
Last reply 10/3/2014 - 12:32am
Replies by: JerryfromFauq

I have been told that all malignant melanoma tissue sent for biopsey contain s-100 protein, and that almost all non melanoma tissue does not. Is this true?

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Kerrid74's picture
Replies 4
Last reply 10/2/2014 - 4:12pm
Replies by: Kerrid74, hbecker, DZnDef, Janner

I just got a call that the wide excision of my right upper arm and sentinel node biopsy came back clear.  Which is good.  But I still feel like I'm holding my breathe.   I know this cancer is vigilant and always wants a way back in, and I will be just as determined in my follow ups.  But after all that I've been reading there are so many stories that begin like mine, all clear and then boom,6 months or 6years later one little guy got away and now it's stage IV.  Be honest- should I be demanding a scan or blood work or anything that might help in just a tiny way to secure my mind that we really did do everything we should have?  The lesion was considered "not thick" at .9mm in thickness and a mitotic rate of <0 with no ulceration. But deep enough to warrant snb. 

thank u everybody and may the force be with u.  The strength ppeople exhibit on this site is  overwhelming.  

Kerri

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ABELL's picture
Replies 10
Last reply 10/2/2014 - 11:58am

Hi everyone,

Please read prior posts for history of the patient...

Need a little advice, really confused and in the dark. Best friend had cyberknife sometime in early August... Started Yervoy August 14th. Only on 2nd treatment now. Her condition has declined 110%. 

 At first, she was tired... Still allowed visitors, communicated via text & answered phone calls. Then the texts got jumbled, didn't make sense. Then those stopped. Now, she can no longer walk or talk on most days.

About a week and a half ago, she went the doctors (for declining health) they advised that she might still have swelling in her brain. They put her back on steroids.  She ended up in the hospital last night, dehydration plus she was not able to talk at all, could not get up out of bed.

They kept her overnight for MRI's, once last night & scheduled another one this morning (not sure why 2 MRI's would be needed).

Is this a normal reaction to Yervoy? Is this a sign that she is not responding to the drug?

I hear of people continuing to work while doing this treatment... Why is her body/mind just shutting down?

 

Any insight would be incredibly helpful...

Thank you!

Amanda

 

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ecc26's picture
Replies 10
Last reply 10/1/2014 - 8:45pm

Hi everyone!

I hope you all are having a good day today. I had been training for a 5k charity run for our local Cancer Resource Center that was to occur at the end of October. With my recent craniotomy, 5k is just not going to happen, but there is also an option for a 2 mile walk, which given my recover is definitely possible and I plan to participate in that segment instead. I have a few team members (my mom and some co-workers), but we need a good team name and I was hoping perhaps some of you out there might have some good ideas. 

I'd love to hear any ideas any of you have for a team name

 

Thanks, and again, I sincerely hope you are all well today

 

-Eva

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 An Invitation to Witness the Regression of a Stage IV Melanoma (a cure?)

 

http://www.atavisticchemotherapy.com//content/cancer_treatments#case_inf...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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