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
Replies 8
Last reply 7/8/2013 - 3:16pm
Replies by: Anonymous, Janner

To make a long story short, I have a lesion on my ear....They did a biopsy, a full excision, and a wide excision, however margins were NOT clean, so I am due back at the end of the month for another excision.... (All these surgeries will have happened between April 1st and July 26th of this year, so about 4 months)

The lesion is a .8mm level II stage 1A, however they call it 'borderline' as severe atypia is the differential diagnosis.... So far I have been treated as if it were the latter of the 2, with everyone telling me surgery is the way to go, nothing else to worry about, treatment would be the same either way.....

I even went back to my primary doc, because I wanted to talk about my path eports and other symptoms I have been having (severe headaches every day, sometimes dizzy spells) and still, he assures me nothing is related to the melanoma where it was so thin and borderline, to go ahead and have the surgery and everything will be OK....He even offered to prescribe me some pills for anxiety, I must have came across as a loony..

That was last week...well, since that day, one of my lymph nodes on my neck have been getting slightly bigger each day.....I have read about the possibility of surgically induced spreading, (since the remaining cells have easier access to the blood stream and lymph system with all the bleeding, swelling, stitches, and so-on)

My questions are:

1) Has anyone else found that the possibility of spreading due to surgeries and unclear margins is probable?

2) How long should I wait for the node to go down before I get it checked out?

 

Out of all of this, I have not seen an oncologist, (no one deems it necessary) and I have not had any blood work, scans, or node biopsies (again, not necessary)

When should I start to ponder the idea of it NOT being all in my head, that this could be a realistic problem that no one wants to take care of????

 

help?!?!?

 

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chalknpens's picture
Replies 2
Last reply 7/10/2013 - 10:55pm
Replies by: chalknpens, Anonymous

I am here to vent some frustration, self-doubt, and fear. I have so little to complain about in comparison to most here. I offer my apologies.

I've only been dealing with skin cancer for a little more than a year - treatments, that is. I've no doubt had it for years and years.
The cancer sitings have been now on my right shoulder (basal), left back(melanoma), left forearm(melanoma), right shin(basal), left calf (squamous)

It took 8 surgeries and about a hundred sutures to clear those away. I have what some of you may recall my naming "The Mark of Zorro" on my back ... seven inches long and three inches wide at the top and bottom. That's the largest of the set of five.

... I saw the dermatologist last week, had another biopsy, and he prescribed an expensive cream rather than more cryosurgery on my forehead (his suggestion.) The biopsy came back positive:  on the left side of my chin, another squamous.

If I have the first surgery on my face, I worry that I will face more to come in another three to six months. Will the next one be the spot on my nose, or among the brown 'liver spots' on my cheeks? Will I have this 'one only,' or perhaps 'just two,' and then, reasonably, 'one more?'

Or will I say, now, 'Enough?' Where do I draw the line  ... this is on top of Multiple Sclerosis ... the cognitive effects of which took me out of my career as a public school teacher. How much is too much?
 

I am not perfect, but I am enough.

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Moodypoodle's picture
Replies 4
Last reply 7/8/2013 - 8:46pm
Replies by: Charlie S, Janet Lee, Linny

Someone mentioned in a recent post about using Firefox instead of IE to post to this board.  Chrome works for me but it took ages to stumble on that fix. It occurs to me that others might be having issues too and could use this simple hint. 
 

Every Second Counts!

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DeniseK's picture
Replies 9
Last reply 7/7/2013 - 8:51am

Hello Everyone,

I had my first infusion of ipi yesterday on the 4th of July.  I'm thinking that's a sign.  Freedom from Melanoma!

So I have a few questions that if you could share your stories with me.

My main goal in taking ipi is to help me become stable for Anti PD 1 trial.  It didn't cross my mind that Ipi could work on me.  Now I might just be wishful thinking but I swear the sub q on my arm is smaller.  Since it's only been 1 day I"m wondering if anyone has ever seen immediate response?  

If I'm a responder, how long does it last?  If I'm reading things right it could be years.  Does it have a tendency to stop like Z?

Thanks for your help

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Tim--MRF's picture
Replies 9
Last reply 7/7/2013 - 7:08pm

I spoke with Janet a short while ago and she is having problems posting.  She has a question that needs some responses this weekend, so I offered to post on her behalf.  Please reply to this post and Janet will read online, though she may not be able to respond:

It’s been quite some time since I’ve posted here, as life with melanoma continues its roller-coaster ride with our lives. My husband was diagnosed with Stage IV Melanoma on January 17, 2013 with unknown primary – a sucker punch from out of nowhere.

Don had CyberKnife radiation to a single brain met in mid-February. We were fighting with BC/BS to cover Zelboraf, so he started on Ipi shortly after the cyberknife. Something went wrong, and the brain met was swelling and Don became paralyzed on one side. He had a craniotomy on March 5, and then spent 5 weeks in rehab. On March 15, he started Zelboraf and it was like a miracle. After rehab, we spent 5 weeks in Florida and had a wonderful respite.

However, after 2 months on Zelboraf, followup scans showed two tiny mets in the brain and “mixed response” to various other tumors in other locations. He was taken off the Z and began Ipi treatments on May 20. He had cyberknife for the two brain mets on May 30. He has now had 3 Ipi treatments, and the 4th is scheduled for July 17.

He has not felt well since the middle of May, lots of nausea and indigestion (stomach mets), lack of appetite, and general weakness. A brain MRI following up on the May 30 cyberknife shows several new brain lesions. It may be too early to tell if the two treated a month ago were taken care of, but there are certainly more. The doctors at Dana Farber are suggesting Whole Brain Radiation so that any other lesions will also be taken care of, and they feel this should be done as soon as possible.

My husband Don has a lot of disease, and we do not know if the Ipi is working for him. We plan to finish with the 4th treatment in a couple of weeks. Depending on whether or not the Ipi seems to be working, our next plan was to hopefully get him into a PD-1 trial, which as we all know will demand a “stable” brain.

I’ve seen posts from people on this forum who have SRS-type radiation treatments to many, many more brain mets than Don is showing now. When and why do melanoma patients with brain mets opt for the WBR? And how likely is it that WBR will work (we don’t seem to have had much luck with the SRS)?

We are looking to make a decision early next week, and, as always, your experiences and opinions will be most appreciated! Thank you all.

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Richard_K's picture
Replies 4
Last reply 7/5/2013 - 12:33pm

Yesterday started out good and then just continued to get better from there.  First, in terms of traffic, the drive into New York City was the best I can ever remember.  Traffic was very light with no holdups anywhere even though I forgot to bring our EZ-Pass.  Second, my derm evaluation started early and went fine with no issues.  Next, I had my blood drawn at NYU and went on to see Dr. Pavlick.  No problems with my exam AND BOTH my creatinine and bilirubin were back to normal.  I was given another six week supply of pills and officially start my 41st month on Zelboraf.

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Anonymous's picture
Replies 14
Last reply 1/7/2014 - 9:01pm
Replies by: Anonymous, Vermont_Donna, jmmm, POW

Ok, need help.  This is really confusing.  My husband is planning on starting short term disability from work on Monday.  His job is NOT protected by the FMLA.  We have to get the paperwork filled out by the doctor and are not quite sure of the best answers.  We were thinking that it would be best to say unknown about returning back to work, so that he could get his 12 weeks pay and maybe they will pay the health insurance premium instead of making us pay COBRA right away.  He would also like to keep his job if possible, just in case of a miracle.

But, then on the otherhand I heard that you should apply for SSDI right away, even if you are on short term disability.  How can you say that you might return to your job on one form and then a week later fill out another that says you are permanantly disabled? 

Also, it's quite possible that they will just lay him off during the 12 week short term period right?  Has that happened to anyone?  Then what happens?  Can they take away your long term disability plan that you paid for when you were employed now that you are no longer an employee?

Do you ever just get to skip short term disability and go straight to long term disability? I'm not talking SSDI, but Unum Long Term Disability? There seems to be some protection there.  It would help him with keeping his life insurance too, then he could get a premium of waiver and it wouldn't matter about not having the job to keep the benefits.  He paid for the life insurance, but it's through the company with Unum. If you could just skip the short term disability that would seem safest.  Everything is though Unum and work.  We don't really trust anyone and no attorneys around here know the answers. 

The best idea seems to be get approved for short term disability, apply for SSDI, then get approved by Unum for LTD and get a premium of waiver. Plus do all this before you may get laid off/fired or whatever.  Am I on the right track?

Sorry, this is a head full.  What can I say my head is full!  Not even sure if I made much sense.

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blueeyes39's picture
Replies 8
Last reply 7/8/2013 - 1:51pm
Replies by: Anonymous, Linny, blueeyes39, kathycmc

I am a stage 3 and was in clinical trial....due to weight loss, unexplained hives and severe night sweats i have had to drop out of clinical trial. my couple questions are is interferon the only treatment for stage 3a? my new dr thinks thats what we should do and in the beginning of all this i thought it was to but after all ive learned about interferon im not sure it is. my dr thinks something is going on but they cant seem to find out where. he suggested another clinical trial, SLD, and interferon. i know its my choice but i know that interferons benefit are very few. if anyone has done this type of treatment or may have some other means please feel free to share cause i would like more choices. THANKS

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DeniseK's picture
Replies 11
Last reply 7/13/2013 - 11:07pm
Replies by: Jaryllane, Janet Lee, DeniseK, mbaelaporte, Amanda, Anonymous, POW

So hopefully I"ll be starting the trial within the next 6 weeks.  What are the side effects of this drug?

Does it cause photosensitivity?  Joint Pain?  Nausea?  etc......

Curious because I hate these side effects.  especially the photosensitivity, I'm cooking on the west coast!!

Thanks,

Denise

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Everymoment's picture
Replies 3
Last reply 7/21/2013 - 4:00pm
Replies by: Everymoment, Janner

Hi,

So some of you may remember me from a while ago. I had vulvar melanoma stage II clear SNB (5 years ago). That was my 4th melanoma and according to the doctors nothing spread. Last PET was probably 5 years ago and it came back clear. I am now 35. I have had crazy symptoms over the past month and at it turns out I have had a stroke. They doctors have no idea why (I don't have a single red flag for stroke and there has been no stroke in my family) and they say that my symptoms don't match that of a stroke because I am having issues all over. My symptoms are dry mouth, dry eyes, disoriented which comes and goes, shortness of breath, burning in arms/pins and needles, when walking at times I can't tell where my feet are being placed, numbness on face (both sides), sometimes food/water tastes smells weird and the oddest thing is my toesnails have horizontal ridges. I have had an MRI of my brain which shows the stroke and an MRI of my spinal cord which shows nothing. I have had a CT scan of my head which showed a sinus infection and a CT of my chest which showed a very small nodule. I had a nodule about 7 years ago and it's probably the same one. No one was concerned about it.

So then I started reading. I read an article about a girl whose first sign that her melanoma spread was she had a stroke. Has anyone every heard of anything like this on this board?

Thanks,

Everymoment

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Hi,

So some of you may remember me from a while ago. I had vulvar melanoma stage II clear SNB (5 years ago). That was my 4th melanoma and according to the doctors nothing spread. Last PET was probably 5 years ago and it came back clear. I am now 35. I have had crazy symptoms over the past month and at it turns out I have had a stroke. They doctors have no idea why (I don't have a single red flag for stroke and there has been no stroke in my family) and they say that my symptoms don't match that of a stroke because I am having issues all over. My symptoms are dry mouth, dry eyes, disoriented which comes and goes, shortness of breath, burning in arms/pins and needles, when walking at times I can't tell where my feet are being placed, numbness on face (both sides), sometimes food/water tastes smells weird and the oddest thing is my toesnails have horizontal ridges. I have had an MRI of my brain which shows the stroke and an MRI of my spinal cord which shows nothing. I have had a CT scan of my head which showed a sinus infection and a CT of my chest which showed a very small nodule. I had a nodule about 7 years ago and it's probably the same one. No one was concerned about it.

So then I started reading. I read an article about a girl whose first sign that her melanoma spread was she had a stroke. Has anyone every heard of anything like this on this board?

Thanks,

Everymoment

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Kev12's picture
Replies 15
Last reply 7/10/2013 - 10:56am

Hi all

 

Firstly, I would like to say thanks for all of the sharing on this forum. My first reaction to my diagnosis of nodular melanoma was to find out everything about this disease that I could and this forum has proven to be invaluable in that regard!

As with most people who receive the dreaded news, I could not believe that something like this could happen to me! I was diagnosed last week and had bloodwork done yesterday, CT scans of chest, abdomen and pelvis this morning (still waiting for the results which is freaking me out!) and I am scheduled for a lymphosintigraphy tomorrow and surgery to remove my sentinel lymph nodes on friday and also to remove more tissue etc from the site of the melanoma.

 

I have been on a rollercoaster ride this far and my moods swing from total depression to being remarkably candid about the whole thing- somehow trying to justify that I will not have any lymph node or further involvement!

 

I have literally spent hours trying to understand every word in my pathology report as it simply scared the life out of me when I first read it. 

Briefly, I have a 1.3mm nodular melanoma on the inside of my thigh just above my knee. It is not ulcerated but has a mitosis rate of 4. No satellitosis was seen nor any intravascular or perinerual infiltration. It is also listed (for what its worth) as a Clark Level III. 

 

What I cannot fing out is what the following means and it is freaking me out! Can anybody tell me what the Appendigeal Sheath is? My pathology report mentions that it is not within the appendigeal sheath? I have no idea if this is a good thing or a bad thing?

 

It seems that the melanoma has invaded my dermis (clark level III) but I dont understand how this is possible? According to the path report there is no loss of the rete ridge architecture and no fibrosis in the dermis. I am definitely not a doctor, nor do I profess to have a cooking clue about what half of this all means, but when I looked at what the rete ridge is it seems to be on the boundary of the epidermis and the dermis? If the rete ridge has not been affected then how has the melanoma invaded the dermis? They also mention that there is a mild chronic inflammatory cell infiltrate in the dermis. I have no idea what that means?

Apologies if I seem to be overly analysing all of this but I am freaked out and trying to understand exactly what is happening to me. I am holding thumbs that I dont have any mets anywhere but it is all quite overwhelming! I got married 2 months ago and it freaks me out to think about what I am most likely going to put my (incredibly sweet and amazing and supportive) wife through. The guilt is overwhelming.

 

Thanks

 

K

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flvermonter's picture
Replies 1
Last reply 7/3/2013 - 8:56am
Replies by: Tina D

The ups and downs with melanoma is so frustrating. Good news: we went to a tecommrnded radiation oncology in Ocala today. he is going to radiate the lung cancer and melanoma st the same time. he ordered a petscan to review first before the radiation and will stasrt the radiation treatment end of next week. he is also introducing us to a medical onc to get my husband in one of the trials. Moffitt wanted to do separate radiations snd said he no medical onc, just the radiation. never understood that.

bad news: took my husband to er tonight with a 102 fever. he has an infection where the drain was ( Moffitt removed it yesterday). now the petscan for tomorrow has yo be cancelled for a week and treatment moved out another week.

we were thrilled to have a doctor who said yes let's treat both with radiation at the same time.. and let's get you in a trial.

Hugs to all, patients and care givers.

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mclaus23's picture
Replies 4
Last reply 7/6/2013 - 10:49pm
Replies by: awillett1991, mclaus23, Anonymous

Hello :)
My father has been battling stage IV melanoma for several years.
He was treated with Ipi and most recently the clinical trial drug PD-1.
He had a very rare side effect on the PD-1 and can no longer take it.
He has 2 masses on his adrenal glands which grew 1/2 inch since he stopped pd-1 which was about 4 weeks ago.
He had a total of 5 infusions.
The adrenal tumors were there with Ipi so he's pretty stable at this time.
I hope the Zelboraf will work for my father.
I would love to hear any feedback from anyone on this drug, side effects, current prognosis!!

Thanks so much in advance!!!!

Margaret

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mclaus23's picture
Replies 0

Hello :)
My father has been battling stage IV melanoma for several years.
He was treated with Ipi and most recently the clinical trial drug PD-1.
He had a very rare side effect on the PD-1 and can no longer take it.
He has 2 masses on his adrenal glands which grew 1/2 inch since he stopped pd-1 which was about 4 weeks ago.
He had a total of 5 infusions.
The adrenal tumors were there with Ipi so he's pretty stable at this time.
I hope the Zelboraf will work for my father.
I would love to hear any feedback from anyone on this drug, side effects, current prognosis!!

Thanks so much in advance!!!!

Margaret

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