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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mama1960's picture
Replies 7
Last reply 6/29/2013 - 7:42pm

Ok, lots of narcotics involved just typed for 15 min and managed not to post a word! Mel moved to bones 2-3 months ago. 3 fractures, both upper arms, right groin, just from bone thinning.LOTS is pain. hit the wall about 12 days ago. Doc put me in hospital. New bone scan 4 weeks into Zelboraf showed lots of new tumors in ribs, so stopped that. Did a 3 drug chemo mix for a quick knockdown, hopefully. Can't name them, doc said they came up with it at MD Anderson. Waiting for insurance to approve moving to rehab to get me on my feet and home. Then, Temodar? Can't remember for sure. Don't know if I will be back to work in 2 weeks, 2 months, or ever! How so we deal with all of this?

It is what it is.

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SarahW's picture
Replies 4
Last reply 6/28/2013 - 6:20pm
Replies by: Brendan, SarahW, DeniseK

Hi all,

My husband's SRS for 3 brain mets in the frontal lobe(the largest is 2.6mm-however there were none 8 weeks earlier) has been scheduled for July 3 @ Moffitt. I gave him a list of questions to ask the Radiation Oncologist. He wouldn't let me come to the appointment. I got some answers, but not quite as much information as I would have liked. The radiation oncologist advised him that I will need to drive him, which of course I was planning to do

To the question of whether he would need to be placed on anti-seizure medication and/or steroids, the answer was "It depends on how he does post-procedure."  So I guess I should be prepared for anything?

Thank you to those who replied to my earlier post. Any other thoughts?

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NYKaren's picture
Replies 15
Last reply 6/28/2013 - 12:34pm

First, thank you to all who responded to my post yesterday. I was deeply shaken and upset but once again, it's time to pull up the bootstraps and move on.
My husband and I met Dr. Greg Kondziolka today and liked him a lot. He showed us the scans and asked me how my hearing is in my right ear. When he showed me how much Mel is in the ear...it basically blocks everything. That was as scary as the brain mets.

It's kind of interesting that one of the larger brain tumors is dangerously close to the area that affect my speech. If I hadn't insisted on stopping Zel for the PD1 trial, I wouldn't have had the MRI, and I'd be talking oddly or not at all pretty soon.

As I said, we liked the doc a lot... He was one of the builders of the gamma Knife system. The best thing about him is that he believes in sedation. (Well, one of the best.)
NYU's Gamma Knife machine was damaged during Sandy, so he does the procedure at 3 tri-state hospitals that have the exact same machine.
We'll be going to South Nassau Hospital, about 15 minutes from our house, which is good when you have to be there at 5:30 am.

Also, yes the GSK trial does require 2 months out from treatment for brain mets, so I'm lucky to be going for Merck's version.

So, onward and upward, and I'll let you know how it goes Tuesday.
Karen

Don't Stop Believing

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KnowThyself's picture
Replies 7
Last reply 6/28/2013 - 11:41am
Replies by: Janner, KnowThyself, becky15

So the lesion is on my upper ear helix...I've had a biopsy, excision, WLE, and now they want to take more because the margins are not clean... however, the path report seems to contradict itself, here's the meat of it:
"Severly atypical dermal and epidermal melanocytic priliferation present at tissue edges...the lesion is histologically difficult and borderline in nature. Although a benign lesion is favored, we are not able to exclude malignant melanoma. The differential diagnosis includes a .8mm deep, nonulcerated, malignant melanoma stage pt1a, with no mitotic activity.. re-excision along with margin of uninvolved skin recommended....
So basically, id like to know if its benign, or malignant...and why they wouldn't be able to tell the difference...I don't want to have more done if its not needed, seems how this time a skin graft won't be able to cut it, he said it'll have to be larger, and get into plastic surgery..... I don't know what to do, I don't want to leave it alone if there are cancerous cells, if they ARE in fact cancerous...but no one seems to know! And with no insurance, and a low tolerance for pain, I need a better answer than 'borderline'....

Help!?!?!?!?

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Tina D's picture
Replies 17
Last reply 7/9/2013 - 9:45am

Sorry to be so long in posting. My mel specialist ( in St Louis) consulted with a surgeon who said that getting a biposy was not something he felt was feasable with my tumors being so deep, and my long surgical history. This was difficult news to recieve! But, thank you to a dear friend who was able to think quickly and clearly ( thank you, Amy!) I now have an appt in Nashville to discuss the Pd1 trial there. One thing that poses a possible denial is my prednisone dosage after the autoimmune response to ipi. I am still on 5 mg prednisone, and that is not a problem, but they have to decide if the dosages, and tapering, fit in with the strict trial guidelines. I have not been able to be on here much due to ongoing set-backs from my husband's back surgery, but will try to post after my visit to TN. Still feeling wonderful and am SO thankful to be here to celebrate our youngest child's 14th birthday today! She was 2 years old when I was first diagnosed with both breast cancer and melanoma within 6 weeks of each other. Yes...I am very blessed to still be here and be able to kiss her sweet cheek this morning and wish her a happy birthday :-)

Tina

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I have created a petition on the whitehouse.gov website asking that tanning beds be regulated as a Class II medical device and be banned for use by minors. As someone who has lost a dear relative to melanoma, I strongly believe that the next generation should be legally protected from these devices, as the dangers are not known well enough.

Please "sign" my petition here:

http://wh.gov/lOFg4

It needs 100 signatures before it can be viewed on the website and at 100,000 the White House will issue an official response. Let's show our leaders how seriously we take melanoma protection!

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I have created a petition on the whitehouse.gov website asking that tanning beds be regulated as a Class II medical device and be banned for use by minors. As someone who has lost a dear relative to melanoma, I strongly believe that the next generation should be legally protected from these devices, as the dangers are not known well enough.

Please "sign" my petition here:

http://wh.gov/lOFg4

It needs 100 signatures before it can be viewed on the website and at 100,000 the White House will issue an official response. Let's show our leaders how seriously we take melanoma protection!

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Brendan's picture
Replies 7
Last reply 6/27/2013 - 8:38pm

Hi Everyone,

Craniotomy #2 was a success and I am NED again.  The surgeon left six chemo wafers in the cavity and my CT was clear (sorry if I posted this already-I am on some serious decadron).  Surgery was on Tues at 7am.  I fell great and I am possibly going home tomorrow.

Thanks for all your support.

Good luck!

Brendan

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joy_'s picture
Replies 3
Last reply 6/28/2013 - 10:56am
Replies by: joy_, benp, Gene_S

Hi everyone.  I have read a few previous posts about ALC and positive immune response with Yervoy.  My husband just had his 3rd infusion (10mg/kg), and I was looking back at his labs... It appears to me that he may be having a positive response.  Can anyone give me your take on these numbers and tell me if this would be a fair assessment?

ALC

1.3 (three months prior to Yervoy)

1.6 (day of first infusion - 2 weeks off Zelboraf)

2.7 (day of second infusion)

2.5 (day of third infusion)

 

Also, I was wondering about the C Reactive Protein number.  Any correlation between that and response?

His number of immature granulocytes is up as well.  Is this indicative of anything? 

I would love to know that his labs may show possible good signs because it has been a little difficult to see new subqs while on this treatment.  As always, thanks to anyone willing to share your insight or experience!

Tracy

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Littlea41's picture
Replies 3
Last reply 6/27/2013 - 12:32am
Replies by: Littlea41, Anonymous, Janner

Hello.

 

I was diagnosed with melanoma in-situ on my wrist in march and had it removed as well as the local wide- everything came back clean.

2 weeks ago I had 2 spots removed from my chest.  One came back OK and the other one came back as the following:

Pathological Diagnosis: Atypical Compound Melanocylic Nevus with Architectural Disorder and Mild cylologic Atypia, (Dysplastic Nevus), see comments.

Comments: Margins involved. 

Gross Description: Received in 10% formalin is a shave biopsy measuring .6 cm X .4 cm with a pigmented area measuring .1 cm X .1 cm.

The doctor doesn't seem to think this is worth doing the local wide on.  I'm concerned because the margins are involved and I'm already a Melanoma patient.  My original melanoma didn't look like a typical melanoma.  in fact, the doctor didn't even want to remove it but I insisted.  I have another spot on my back that is darker then any other mole on my body-- again, she didn't want to take that either.  This is a new doctor I am seeing (not the one who removed the melanoma).

What are your thoughts on getting a second opinion or- having the local wide done on the mild nevus?  I've read that some reports have come back OK but when reviewed by another pathologist, they have concluded melanoma. 

 

Thanks for your time

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Replies by: Charlie S

The Save Your Skin Foundation is desperately looking for basal-cell carcinoma patients to help with a survey this week. If you are interested in participating please contact us at: kfm@saveyourskin.ca.

A community of volunteers determined to eliminate melanoma through research and education, and dedicated to those touched by it.

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NYKaren's picture
Replies 10
Last reply 6/27/2013 - 9:11am
Replies by: Tina D, Owl, Brendan, DeniseK, kylez, jP85, Anonymous, POW, awillett1991, King

so I had my scans yesterday for measurable disease to get me into PD1 trial and to rule out brain mets.

good  news--i've got measurable disease.

bad news--brain mets.  3 around 1 centemeter, and 1 less than 5 mm.  I am scheduled to see Dr. Kondzolka, Director of Stereotactic brain neurosurgery @ NYU.  Tomorrow is consult, Gamma Knife procedure is probably Tuesday.  He used to be at University of Pittsburgh...anyone know of  him?

So I guess I'm stage IV now.

I was crying on the phone when Dr. Pavlick told me. 

I guess I'll post more after I see Dr. K tomorrow...my husband is coming with me...can anyone suggest questions to ask?

I know some of you have had Gamma Knife, can you please share your experience with me?

thanks,

Karen

Don't Stop Believing

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mary in Rhode Island's picture
Replies 4
Last reply 6/27/2013 - 9:41am

Has anyone used an antibiotic with Zelboraf?  I was recently ill and needed an antibiotic. Evidently, with zelboraf there are many that are counterindicated>>>>>due to arrythemias of the heart or qt lenght. I ended up on doxycline.....it worked but I was partially deaf while I used it

What antibiotic have you been successful with while on Z.  I have been on Zelboraf.almost 2 yrs.  Last pet showed there might be a new issue. but that is another issue...thank you for any info.  Regards, Mary

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mandamanda123's picture
Replies 1
Last reply 6/27/2013 - 9:16am
Replies by: Tina D

Wanted to give a quick update on my now 30-year old husband who was diagnosed at stage 3 in Feb 2012, for anyone in a similar situation facing difficult news/choices. My husband opted for no treatment and decided against a clinical trial following an axillary lymph node (complete) dissection in April of 2012. There was no evidence of melanoma in any of the removed material. He had no/unknown primary and the initial mass was macroscopic (very large), possibly consisting of matted lymph nodes, BRAF+. His most recent scans were in November of 2012 (no head scan at that time), no concerns. He has scans in July, so we are holding our breaths because we realize that this is critical timing for recurrence. However, he feels healthy and is thus far happy with his decision to decline further treatment. We will continue to hope and pray that the surgery to remove the initial mass was a complete success and I will update on his scans in July.

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mom3girlsFL's picture
Replies 1
Last reply 6/27/2013 - 9:17am
Replies by: Tina D

Hello fellow warriors,

It's been a long time since I've posted anything...basically, have had no new news to report AMEN!  Although I am not active in posts, I do still visit and read.  MPIP family is always in my prayers!

I remember posting frantically a couple years ago when mel invaded groin lymph nodes, not once but twice.  I really thought some very terrible things although I kept my poker face with family and friends.  This community allowed me to vent my fears and frustrations and I will forever be grateful to the old timers who helped me along.  I continue to pray for the warriors and their families who we have lost and as each day passes I am grateful for another day.  This does not mean mel isn't ALWAYS on my mind, but time does help push it towards the back of daily living.

Keep fighting!

Laurie

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