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Can't get surgey, any other options?


#1

So I am asking for a friend who has SS. Doctors said his heart is only working 44%. His tumor is wrapped around his heart so they can't perform surgery. He has already done many different forms of chemo, and his lifetime limit of radiation. Does ANYONE have a similar situation? Or think he could get surgery somewhere? He is in Ohio right now at the Cleveland Clinic. I'm in South Jersey so I tried to refer him to UPenn, but I am trying to find him alternative choices. Has anyone BEAT SS without surgery? Is that even possible? Thanks guys!


#2

Unfortunately my son had a tumor that was abutting the heart and with every heart beat it made a hole somewhere and he had blood around his heart. We lost him on 2/22/15 he was only 23 . Hope you will be able to get help. Good luck!


#3

This may sound odd but I was watching NY Med last summer or fall and women had SS tumor on her heart that nobody else would operate on. I believe that is was one of Dr. Oz associates who took the case on and removed the tumor successfully. I think it was Memorial Hospital. Best wishes.


#4

I am so sorry to hear about your son. It really does break my heart. I wish there was something that could've been done. Thank you so much for your reply though, I appreciate it!

JOE'S MOM said:

Unfortunately my son had a tumor that was abutting the heart and with every heart beat it made a hole somewhere and he had blood around his heart. We lost him on 2/22/15 he was only 23 . Hope you will be able to get help. Good luck!


#5

Thanks for the reply! Do you have ANY idea where I could find a link to watch this? I'm on google, but I don't exactly know what to look for. That would help a lot though, I didn't know there was something out there like this!

Taz said:

This may sound odd but I was watching NY Med last summer or fall and women had SS tumor on her heart that nobody else would operate on. I believe that is was one of Dr. Oz associates who took the case on and removed the tumor successfully. I think it was Memorial Hospital. Best wishes.


#6

My son had a large tumor in his Medial Steinem , that they said was inoperable. Dr. Majit Bains a thoracic/cardiologist successfully removed it. He is associated with Sloan Kettering in NY. His number is (212) ■■■■■■■■. God bless and many prayers.

Synovialmom

Don't do any more chemo or radiation.


#7

Was the tumor on his heart or was it just in the chest area? did he do chemo and/or radiation before it was removed? thanks for the reply by the way!!

Synovialmom said:

My son had a large tumor in his Medial Steinem , that they said was inoperable. Dr. Majit Bains a thoracic/cardiologist successfully removed it. He is associated with Sloan Kettering in NY. His number is (212) ■■■■■■■■. God bless and many prayers.

Synovialmom

Don't do any more chemo or radiation.


#8

You can find it on you tube or Google NY Med, cardiac surgeon gives patient hope.

Hood this helps



JulieK4 said:

Was the tumor on his heart or was it just in the chest area? did he do chemo and/or radiation before it was removed? thanks for the reply by the way!!

Synovialmom said:

My son had a large tumor in his Medial Steinem , that they said was inoperable. Dr. Majit Bains a thoracic/cardiologist successfully removed it. He is associated with Sloan Kettering in NY. His number is (212) ■■■■■■■■. God bless and many prayers.

Synovialmom

Don't do any more chemo or radiation.


#9

Wow Julie, I was going to post a very similar question to this forum. Here's my story. I'm not sure it's helpful to you Julie but I want you to know we're in a similar situation.

My brother (26) has SS. He's at NIH in Maryland now. We were getting him ready for a clinical trial when we discovered that one of his three tumors has grown so large that it's crowding his intestine. Liquid can barely pass through and food cannot. They have him on an IV drip but the cancer is effectively starving him. That issue as well as a few others has made him ineligible for clinical trials. He's had numerous rounds of chemo and radiotherapy. None were very effective and he's not strong enough to do more treatment anyway.

We only just found out he's ineligible for clinical trials in the last 24 hours, and we haven't spoke with his primary doctor about what to do next. We suspect surgery is the only option, but it carries significant risk because of the tumor's proximity to his intestine. Every doctor we've spoken with thus far has discouraged surgery as an option. But now I wonder if it's his only hope.

I will follow up with the doctors that you've all suggested. Please let me know who else we should contact or what we should do.

Thank you so much!

-Kevin


#10

Kevin,

For some reason I don't think I ever noticed this reply. And I apologize so much. First, how is your brother doing now? Has any progress been made? And I just feel like something can always be done. Where are you guys located?

happythoughts22 said:

Wow Julie, I was going to post a very similar question to this forum. Here's my story. I'm not sure it's helpful to you Julie but I want you to know we're in a similar situation.

My brother (26) has SS. He's at NIH in Maryland now. We were getting him ready for a clinical trial when we discovered that one of his three tumors has grown so large that it's crowding his intestine. Liquid can barely pass through and food cannot. They have him on an IV drip but the cancer is effectively starving him. That issue as well as a few others has made him ineligible for clinical trials. He's had numerous rounds of chemo and radiotherapy. None were very effective and he's not strong enough to do more treatment anyway.

We only just found out he's ineligible for clinical trials in the last 24 hours, and we haven't spoke with his primary doctor about what to do next. We suspect surgery is the only option, but it carries significant risk because of the tumor's proximity to his intestine. Every doctor we've spoken with thus far has discouraged surgery as an option. But now I wonder if it's his only hope.

I will follow up with the doctors that you've all suggested. Please let me know who else we should contact or what we should do.

Thank you so much!

-Kevin


#11

Julie, Kevin's brother passed away :-(