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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Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

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So I posed a question on another post about Melanoma shopwing up in a different set of nodes other than the SLN 

It is about 9 months since diagnosis and surgery.

I could absolutely swear the "contours" of my right arm pit are different than the left.

I don't see my oncologist for about 5 weeks.

I see my neurologist in 2 weeks for a botox treatment for headaches and facial spasms. (Melanoma was on right cheek at base of ear.) 

Neg SLN Biopsy

over 1mm

mitotic 5/mm2

vertical growth 

clarks IV+

so anyway can you actually feel if the shape of your armpit is different is that nodes...i see people getting up in there and I just dont' know what to feel for lol

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lrkg1234's picture
Replies 10
Last reply 5/19/2013 - 11:24am
Replies by: lrkg1234, kylez, aldakota22, Anonymous, MattF

We had a pretty crazy week at MD Anderson and not very good luck with our MRI, varying reports etc.  We still don't totally understand it and have had 3 opinions.  Please read below and let me know what you think. 

First doctor Patel calls us and says there are several areas on the brain that look like tumors, not sure how many, maybe some are scar tissue. She says that the radiologist says there was no contrast, but there clearly was and that she had other doctors agree that saw contrast.  She begins to tell us about possible SRS or Whole brain radiation.  I asked if she remembered that Scott has already had both SRS and Whole brain radiation.  She had not remembered that so things would obviously be different now.  She was not sure then if she could possibly be looking at scar tissue from the previous treatment.  NOT comforting, or cool waiting for several more days for an explanation.  The scan was done on Sunday and we didn't have an amended written report until yesterday, after we were back home in Indy.  

 

Here are the two reports, the preliminary and the amended. 

 

Technique, MRI of the brain without IV contrast-diffusion, axial T2 and axial flair were included. 

Findings:  There are areas of new T2 FLAIR hyperintensity in the left insula and bilateral left greater than the right anterior temporal lobes concerning for new foci of metastatic disease.  The previous enhancing lesions demonstrated are not well evaluated due to the noncontrast technique.  There is likely numerous enhancing lesions that have increased or that are new, however, cannot be evaluated due to noncontrast technique.  The orbital structures are unremarkable.  There There is no evidence for acute infarction.  The paranasal sinuses are clear.  There is mucosal thickening in the right mastoid air cells.  The left mastoid air cells are clear. 

Impression.  LIkely other foci of metastatic disease, however cannot be seen due to current technicque.  MRI with contrast is recommended. 

 

OK, then nothing else happens, no new MRI, just a change in report.  Here is the new ammended report. 

ADDENDUM:

It appears that the patient had IV contrast, which was not pushed over to PACS and given that now these images have been pushed over, it is noted theat the patient is status post IV contrast.  Multiple enhancing lsions as dtailed below:  then goes on to list a total of 7 lesions.  Some of these are new when compared with the prior. 

So, my question is what is reality? 

We got the disc yesterday in the mail and gave it to the radiation oncologist office here.  He calls my husband last night and says that it might not be so bad as 7 tumors, it might just be 2 and then treatment would be possible.  He is home with a busted knee until for a week and a half and says that we can deal with it then, or see someone else.  He does not believe it will make a difference in Scott's treatment to wait a week or so. 

This is just craziness. I think they clearly screwed up the MRI at MD Anderson.  Bad news is hard enough to take, but it would be nice not to be told a few different things.  What does everyone think of these reports?  What does it exactly mean to "push" these images over? 

Thanks for the help.  Lisa

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SDJanku's picture
Replies 4
Last reply 5/18/2013 - 11:50pm
Replies by: Janner, malika, SDJanku

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

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SDJanku's picture
Replies 1
Last reply 5/18/2013 - 5:25pm
Replies by: washoegal

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

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Erinmay22's picture
Replies 2
Last reply 5/20/2013 - 12:50pm
Replies by: Erinmay22, kylez
A few weeks ago I had an editor from Everyday Health ask if they could film me for a piece on Melanoma for awareness.  Here is what they put together. 
 
 
It's nice to hear more and more folks talking about it.  Although we always see discussions of it go up this time of the year!  
 
As as update on me - I had scans again this past week.  The lymph node they are watching continues to shrink.  The lung spot that showed up 4 weeks ago is gone.  There was a tiny spot on my L5 vertebrae but the doctor didn't seem concerned at all about that (but it's much easier for him not to worry...)  But still feeling pretty good!   And hopefully all heading in the right direction! 
Erin
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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ljhncj12345's picture
Replies 8
Last reply 5/24/2013 - 1:51pm

I read this board frquently but seldom post anything.   I Was just wondering if anyone out there has had a good result after ony 3 ipi treatments.  My husband has had a rare side effect that put him in acute kidney failure. Steroids have brought kidney function back to normal but now they will not do the fourth treatment. Scans on monday and we fid out where we are on Wednesday.

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sjl's picture
Replies 4
Last reply 5/22/2013 - 3:52pm

Hi - it's been awhile since I posted.  My husband's situation has very rapidly deteriorated in the last 3 weeks.  The tumors on his neck are huge, his face is distorted, he can't talk or swallow, one eye will not close and initial scans show that the melanoma is most likely now in the liver and lungs.  Further testing has not been done because it doesn't matter with the neck the way it is.  The tumors are pressing on the corotid artery and the jugular vein.  He is on oxygen and a feeding tube.  He's got blood clots in one lung.  Carbo/Taxol quit working, Yervoy failed, a round of Dacarbazine didn't seem to help and he just completed 5 rounds of radiation that seem to have slightly shrunk what we can see.  His situation is so bad that our local doctor didn't want to complete the radiation that was begun while he was hospitalized and under the care of his melanoma specialist two hours away form home.  He was rehospitalized to get the feeding tube under control and they wanted to complete the radiation so it was done.  Now they want to talk to us about a clinical PD1 trial.  What are your thoughts on this?  And who pays for it?  It would be done at the Hillman Cancer Center in Pittsburgh. I'm not sure if I've tracked down the correct trial or not but if I did it's a phase 1 trial.  He's cKit and BRAF negative, NRAS positive.  I want to go to the appointment as fully prepared as I can be so I can ask the right questions and have some idea of what to expect.

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Hi,

I am new to this forum

I am stage 4 and I been NED for 12 + months after taking PD1. I was a complete responder on PD1.

To my surprise, I had my FU Mri brain & CT scans. CT results showed no tumors NED. BUT Brain MRI showed new MET in Brain 6mm. This is my first brain met and I am very scared. I am hoping that this is not the start of multiple brain mets.

I have researched SRS and the results are mixed tosuccessfully killing  the tumor completely. Also the side effects of SRS and the radiation killing healthy cells is something that I concerned about.

I have been reading  about Proton therapy for brain mets. Research says Proton therphy has  less side effects & less damage to healthy cells.

Has anyone treated their Brain Mets with Proton Therapy & what were your results? Was the treatment successfully?  Any short term and long term effects?

MD Anderson has an outstanding Proton Treatment Center. Anyone have their brain mets treated at MD Anderson. What kind of treatment did you get for your brain Met at MD Anderson??  Did MD Anderson give you a choice to have Proton Therapy?

I would hate to fly to MD Anderson, and then MD Anderson decides is to give me SRS and not Proton. I can get SRS near my home so I would only be going to MD Anderson for the Proton Therapy.

 

Thanks for  your replies to my post.

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/13/2013 - 9:04pm
Replies by: JerryfromFauq, Anonymous, washoegal

Does anyone have suggestions for a family member diagnosed with stage iv melanoma and no insurance? Unfortunately, we do not qualify for medicaid, but are far (very very far) from being wealthy.

Thanks!

P.s. I already looked into every type of insurance - can't find anything.

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Anonymous's picture
Replies 3
Last reply 5/22/2013 - 2:07pm
Replies by: Anonymous

Here is the series of events....

-Biopsy  early April

-Full excision end of April (diagnosed stage 1A)

-Progressively, in this last week, brown pigmentation is showing up right through the excision scar....it is not normal scar tissue, it's the same shade as the brown color their originally removed, and its exactly where it was before ........... The

-WLE scheduled for the end of this month

 

 

Is it possible that in the last month, (and since the margins from the last excision were NOT clean) that it is still growing, maybe even at a faster rate now that they've messed with it so much? Im wondering why they didnt go right from the biopsy to the WLE, but they DID remove ALL the visible pigmentation will the full excision, and now I can see it again....

 

Thoughts?

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/18/2013 - 9:13am

I need helping finding a doctor for a family member diagnosed with stage iv melanoma with metastasis pretty much everywhere (brain, lungs, liver, lymph nodes, etc.). I feel like due to the diagnosis and poor prognosis, I don't want to mess around - I'd like to get, at the very least, an opinion from a top doctor in the field of melanoma research. But, I'm having a hard time figuring out who that would be... Any advice? how to research? good experiences from specific doctors? I have a bazillion airlines miles so we can pretty much pack up and go anywhere.

This is scary stuff! Any help would be very much appreciated!!

Thanks!

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A melanoma advocacy group in Canada is conducting a survey of melanoma patients who have taken trametinib.  YOU DO NOT NEED TO LIVE IN CANADA TO PARICIPATE.  

The purpose is gather data to help inform the appropriate government agency about whether this drug should be funded in the Canadian health system.  If you live in Canada and have taken this drug please take a minute to complete this survey:

http://obsurvey.com/S2.aspx?id=0A9B7A11-0458-454D-B1A1-D118FBE8C121

Tim--MRF

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JoWen's picture
Replies 4
Last reply 5/18/2013 - 1:50pm
Replies by: MattF, JoWen, Anonymous

A few years ago Joe began having cluster headaches....it came in cycles, lasting anywhere from weeks to more than a month at a time.  Each one peaked at around 15-20 minutes and than began to subside.  The event lasting about an hour, about the same time each day.  Each time there was a physical change noticeable in the drooping and tearing of the eye.  He said that the pain would literally go to his jaw line.  Seen by PMD, Dentist, Endontist (for a root canal that he didn't even need) Neurologist and Neuro/Opthamologist at Cincinnati Eye Institute and a CT was done (normal)  Numerous meds tried the only thing that seem to work for short time only was Prednisone, however they did not want to continue having him on a steroid.  There was nothing out there for his pain....when it came on.....he paced the floors waiting for it to subside.  We were told that they don't know what causes cluster headaches and for some, it's doing or taking whatever helps the individual.  Oxygen was suggested but he declined at that time.

Within the last two months, he began to have a blurred/foggy vision and an uncomfortable irritation in the eye.  Seen by the eye doctor, he found that there were cataracts, but also evidence of possible past episodes of iritis. There was a thickened area on the sclera which he said was a cholesterol deposit.  The arteries within the eye were engorged, which he said were sometimes typical of people with high blood pressure, however, Joe's BP is constant in the range of 110/60. So he said that there may be more going on, possibly systemic or involving connective tissue.  It was then that Joe told him of his recent diagnosis.  It was felt that with upcoming surgery and pending CT and MRI, we wait until the results of these come in.

So now I am wondering, whether or not his "cluster headaches" have really been that, or connected to the melanoma

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JoshF's picture
Replies 6
Last reply 5/18/2013 - 5:40pm
Replies by: JoshF, Anonymous, Cindy VT, MattF, Kim K

So tomorrow is 2 years NED though I've had my scan a bit over a month ago which my onc said is a big milestone. I'm not a typical case because they never found a primary but thought that I may be a dermal primary. Anyway my onc feels scans would be more harmful and my chances of recurrence is very small. I voiced my concern about cells in bloodstream or lying in wait. I was told this is highly unlikely as with the amount of time between having melanoma and now the 2 years of NED something would've surfaced. His biggest concern for me is being in a higher risk group with already having melanoma. He feels blood work and skin checks would be adequate. He is a melanoma specialist and well respected and constantly says take the monkey off my back and put it on his...easier said than done. Anyone want to share their insight into melanoma cells in blood and my follow up plan.

Josh

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

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