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Wed Dec 23, 2015 5:58 pm

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Posts: 357
Location: SE Texas

You can read my updates here...

viewtopic.php?f=2&t=11740

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Diagnosed with a choroidal melanoma 7/1/2014

Enucleation of left eye 9/2/2014

New Prosthesis
11/4/2014


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Sat Dec 26, 2015 10:56 am

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just a reminder that not all cancers are the same.



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Fri Feb 05, 2016 10:54 am

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Joined: Sun Jan 22, 2012 11:41 pm
Posts: 173
Age: 48

Truer words were never blogged!

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Eye removed January 16, 2012 due to Choroidal Melanoma



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Fri Feb 05, 2016 11:31 am

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so so true...Lil

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Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Mon Mar 14, 2016 5:05 pm

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Joined: Tue Sep 13, 2011 3:25 pm
Posts: 54
Age: 39
Location: Houston, TX

It's been a while since I posted. I was really trying my hardest to move on with my life. Job is going well, family life is great. I also now have a son who's 7 months old. I don't think I've ever loved someone so much in my life. He is the flipping cutest boy I've ever seen.

Be that as it may, I was going on 4.5 years cancer free, then 2 lesions were found in my liver late last year. I had 2 biopsies to inspect, and a surgery to remove one of them. I was then put on a combination Pembro + Vorinostat drug regiment. Unfortunately, the drugs are not helping because they found additional lesions in my liver again.

I'm not afraid of dying, that's not a huge issue. But what I hate more than anything is that I will not likely get to see my son grow up. Even worse, he won't even know me. My doctor said if left untreated, I probably have around a year. With current treatments, maybe 2-3 years.

They're trying to see how quickly they can get me into a TIL treatment since they were able to grow T-cells after they took out the last tumor. In the mean time, we're looking to see if they can do anything to bridge the gap between TIL treatment and now; basically, before the tumors grow to large.

Life is great, until it smacks you in the face with a large hammer.

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Always follow your dreams, except for that one where you're naked at work.



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Mon Mar 14, 2016 5:21 pm

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Joined: Sun Dec 25, 2011 4:17 am
Posts: 624
Age: 61

Hi Skurtn, It is good to have you back, I too have returned after a hiatus. I am roughly in the same situation as you are in and I hope you have taken time to read some of the successes that have been achieved with a variety of approaches to the disease and I would go after whatever, wherever as your abilities allow you too. If there is any resource from any where the internet reaches that we can help you with, please feel free to call on us to work on it for you. It is easy to tell you that you are not alone, but I and many others are here with you, going through the very same thing, lean as hard as you feel able too, take care.


Tom

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59/M/Enucleation 2012/Ocular Melanoma/Mets June 2013

Tommonoli passed away on December 28, 2016
He will be missed.

http://www.legacy.com/obituaries/macon/obituary.aspx?pid=183240054



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Mon Mar 14, 2016 6:01 pm

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Joined: Tue Sep 13, 2011 3:25 pm
Posts: 54
Age: 39
Location: Houston, TX

Hi Tom,

I was looking back through the posts in this and noticed that you've been going through some really trying times as well. One of your posts back in 2014 indicating that you've been going through various chemo/immune therapy treatments.

How are you doing now? It's been about a year since then.

P.S. Thank you for the words. My one true goal, more than anything, is to be able to see my son grow up, and at least remember who I am. I hope that can become a reality.

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Always follow your dreams, except for that one where you're naked at work.



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Mon Mar 14, 2016 6:32 pm

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Joined: Sun Dec 25, 2011 4:17 am
Posts: 624
Age: 61

Thank you Skurtn, I started the clinical trial, but was turned lose when the tumors exceeded the studies parameters after 5 months. I have not been invited to join any of the others, mostly due to a lack of genetic markers qualifying me to participate. Out of 6 per million and 800 who develop mets each year, there are very few folks like me that have neither of the markers that the researchers need. One dose of chemo (for brain cancers, not OM) and I decided to not pursue any further treatments. June will be 3 years since mets and I believe that it is my odd combination of genetics that is resisting the spread of the cancer. Except for pain medication to offset the pressure the tumors are creating in the liver, you would not know that I am Stage 4. As I said, I am encouraging you to find every outlet, no matter how distant to fight the disease, without seeming to say, "do as I say, not as I do". Thank you again for caring, I will continue as long as I am able to, take care.

Tom

_________________
59/M/Enucleation 2012/Ocular Melanoma/Mets June 2013

Tommonoli passed away on December 28, 2016
He will be missed.

http://www.legacy.com/obituaries/macon/obituary.aspx?pid=183240054



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Sat Apr 30, 2016 5:11 am

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Joined: Sun Jan 22, 2012 11:41 pm
Posts: 173
Age: 48

Just an update everyone.

Latest round of test results and no mets.

Wanted to drop a quick post and give everyone an update.

Troy

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Eye removed January 16, 2012 due to Choroidal Melanoma



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Sat Apr 30, 2016 11:31 am

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Sk...You will c your son grow up...hang in there and a positive outlook will guide you...Dr's don't know everything...all cancers are not the same...wishing you the best outcome...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)


Last edited by Lil on Sat Apr 30, 2016 11:35 am, edited 1 time in total.


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Sat Apr 30, 2016 11:33 am

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hey Troy keep in touch for sure...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Mon May 23, 2016 4:11 am

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Joined: Mon May 23, 2016 4:02 am
Posts: 4

:shock: :shock: interesting story here
ห้ามพลาดกับเว็บไซด์คาสิโนออนไลน์ที่ใหญ่ที่สุดในประเทศไทย เปิดบัญชีแรกเข้าฟรี ฝากถอนไม่จำกัด ไม่มีค่าธรรมเนียมเล่นเกมส์ใดๆทั้งสิ้น เพียงแค่สมัครสมาชิกวันนี้ คาสิโน


Last edited by sonnee on Wed Jun 29, 2016 10:02 am, edited 2 times in total.


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Sun May 29, 2016 1:59 pm

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Joined: Sun Jan 22, 2012 11:41 pm
Posts: 173
Age: 48

One thing I have discovered since getting cancer and having my eye removed is that there are some interesting stories, real life stories. When we share these stories, they take on a life of their own and become bigger than each of us. I think a little piece of our humanity is born out in these posts. I don't know about everyone else, but I am glad to have had this forum, especially the first year after having my eye removed. The story of others made my life easier, even as I struggled with my own mortality. People like Tom and Raylene have helped me grapple with my own situation in ways I never thought possible from people I have never personally met. I hope that all people, whatever the outcome, find some peace from our posts. We are truly one community brought together through adversity and, in some way, that conflict within our own selves have revealed a humanity which makes us a little better, a little more understanding, a little less selfish, and a little more human. I do not think that cancer brings out the best in us, I know this to be false from my personal perspective anyhow. It does, however, remind us of our own mortality; and once we accept that mortality makes us a little less arrogant and a little more human...

I hope that everyone diagnosed with eye cancer can understand that our fates were sealed the moment we were born into this world...and though we all planned on living until 90+ and accomplishing all our goals, fulfilling all our desired, and seeing all our dreams come true, it happens that way only for those who are convinced that our reality was our goal, or desires are truly what we already have, and our dreams will come true today and we will celebrate them tonight.

Please, despite cancer or losing and eye, go live today. We are all mortal and despite what anyone believes, we are still alive and, irrespective of what you believe, the moments you will miss the most are not the ones that you will never know, but the opportunities that you missed worrying about those moments.

Everyone, go do something fun with the people you love today...even it it's just going to get an ice cream...

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Eye removed January 16, 2012 due to Choroidal Melanoma



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Sun May 29, 2016 2:37 pm

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amen to everything you said for sure...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Fri Jun 03, 2016 10:44 pm

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Joined: Mon Oct 13, 2014 4:16 am
Posts: 357
Location: SE Texas

Update:

I was at M.D. Anderson last Tuesday (5/28) for CT scans and saw Dr. Sapna Patel Wed. (5/29) and got the GOOD REPORT of "no growth in the two nodules in my right lung, no new nodules and the liver is still clear". I then took my 20th treatment of Nivolumab.

God has been so good to me.

_________________
Diagnosed with a choroidal melanoma 7/1/2014

Enucleation of left eye 9/2/2014

New Prosthesis
11/4/2014


Image


Last edited by WDB1944 on Fri Jun 03, 2016 11:27 pm, edited 1 time in total.


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Fri Jun 03, 2016 11:12 pm

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WDB..I'm so happy that your check up went well...That's the best news!!!!!!!! Lil :)

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Fri Jun 03, 2016 11:20 pm

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Joined: Mon Oct 13, 2014 4:16 am
Posts: 357
Location: SE Texas

Lil wrote:
WDB..I'm so happy that your check up went well...That's the best news!!!!!!!! Lil :)



Thanks!

_________________
Diagnosed with a choroidal melanoma 7/1/2014

Enucleation of left eye 9/2/2014

New Prosthesis
11/4/2014


Image



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  Profile

Fri Jun 03, 2016 11:45 pm

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Joined: Mon Jan 05, 2015 3:10 pm
Posts: 2210

for sure ... Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Fri Jun 17, 2016 10:49 am

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Joined: Sun Dec 25, 2011 4:17 am
Posts: 624
Age: 61

Great news always to get a thumbs up from the doctors.



Tom

_________________
59/M/Enucleation 2012/Ocular Melanoma/Mets June 2013

Tommonoli passed away on December 28, 2016
He will be missed.

http://www.legacy.com/obituaries/macon/obituary.aspx?pid=183240054



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Mon Jan 23, 2017 4:53 am

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Joined: Sun Jan 22, 2012 11:41 pm
Posts: 173
Age: 48

I know our choroidal melanoma community has suffered many losses and I do not post nearly as often as I did in the past. I find the loss of those I consider friends such as Reylene and Tom make visiting this site regularly a little hard for me. I post today as I just pased my fifth year anaversary of losing my eye without metastasis. This, as many of you know is a big milestone and I wish to give those of you early in the battle with this disease a little hope that there are those of us with large tumours found late that are beating the odds.

I spoke many times with Tom prior to his passing, he was alway positive right to the very end and though he was suffering in the final stages of this disease, was always more concerned with others than himself. I will miss him and hope that this post gives some of those fearing an inevitable outcome that there are survivors living happy lives.

Remain positive and enjoy every day.

Troy

_________________
Eye removed January 16, 2012 due to Choroidal Melanoma



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