Just wanted to add that my thoughts and prayers are with you. Thanks for posting this info. because
it has been atleast 2 yrs since my son has had an echo. I honestly had forgotten to ask about how
often that should be done along with the other scans. We had hoped to start orthodontic treatment
but it worries me to start this 2yr. committment with ASPS being so unpredictable.
Thanks again for sharing.
Peace and blessings,
cindy
'K' from USA - Dx 2007 at 10 years old
Re: 'K'
Dear 'F',
Thank you so much for sharing this difficult situation that 'K' now faces. I can understand how anxious you must be feeling when your little girl is in a dire situration. But God is good and in control no matter how evil this disease is. We have not been given a spirit of fear but of love and power and a strong mind. That is my prayer for you. That God would surround you with His love and give you the power to fight and the strong mind to make good decisions without being cluttered with fear.
It is such a blessing to be in this country and have access to such excellent surgeons. What Doctors today can do inside of our bodies is truly a miracle. I will also be praying for the surgeons to be guided by unseen hands and to have the wisdom to make the best decisions once they get into the surgery. My heart breaks for some of those who come into this forum from other countries with no knowledge of this disease and heading in the wrong direction for treatment until they get some great information from this forum. We all were there at some time.
Jordanne has had several EKGs because she has had heart palpitations since high school. I, like you , have sometimes felt it might be a waste, but I'm glad now that they have been keeping an eye on her heart. Our friend, Tiffany, who I think knows you from the Sarcoma alliance, had a fast growing tumor wrapped around her aorta and touching her heart, lungs and liver. they were able to shrink it with heavy duty chemo and then were able to remove it successfully. I know it's not the same kind of surgery but it just reinforces how amazing some of these surgeons are.
'K' and all of your family will be in my prayers.
God bless you all,
Dotty
Thank you so much for sharing this difficult situation that 'K' now faces. I can understand how anxious you must be feeling when your little girl is in a dire situration. But God is good and in control no matter how evil this disease is. We have not been given a spirit of fear but of love and power and a strong mind. That is my prayer for you. That God would surround you with His love and give you the power to fight and the strong mind to make good decisions without being cluttered with fear.
It is such a blessing to be in this country and have access to such excellent surgeons. What Doctors today can do inside of our bodies is truly a miracle. I will also be praying for the surgeons to be guided by unseen hands and to have the wisdom to make the best decisions once they get into the surgery. My heart breaks for some of those who come into this forum from other countries with no knowledge of this disease and heading in the wrong direction for treatment until they get some great information from this forum. We all were there at some time.
Jordanne has had several EKGs because she has had heart palpitations since high school. I, like you , have sometimes felt it might be a waste, but I'm glad now that they have been keeping an eye on her heart. Our friend, Tiffany, who I think knows you from the Sarcoma alliance, had a fast growing tumor wrapped around her aorta and touching her heart, lungs and liver. they were able to shrink it with heavy duty chemo and then were able to remove it successfully. I know it's not the same kind of surgery but it just reinforces how amazing some of these surgeons are.
'K' and all of your family will be in my prayers.
God bless you all,
Dotty
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Fictional
Re: 'K'
Thanks again everybody - cindy, Dotty, Mario, really everyone for their best wishes and prayers. Dotty - I re-read your post as we were waiting for 'K' to get out of surgery and it was very encouraging. Thank you.
She had the surgery yesterday. Dr. Brian Reemtsen is AMAZING. I'm posting from the PICU because UCLA Hospital has Wifi (yes!). Her time on cardiac bypass was only 13 minutes. Very thankful for this. Total surgery time a little less than 3 hrs.
She is sleeping now, but definitely much happier that she is gradually getting detubed and de-lined. We are in the PICU. After her nap, she's to be up in a chair and walking a few steps etc. You know the drill. She's been surprisingly chatty (more than after thoracotomies), and on her iPod and laptop this morning 'talking' to friends.
We hope to learn tomorrow whether there was necrosis. The 'thing' was very bizarre - an ASPS lung met had eroded into the pulmonary vein in one tiny spot - and was floating upstream in the pulmonary vein (normal blood and normal vein wall around it. It reach into the left atrium. The heart was not invaded, so thankfully no need to treat the heart.
The weird thing is that the surgeon said the 'thing' was "very soft and by gross appearance he thought necrotic. We will know tomorrow if it is. if it is, this is very good news - and hopefully we can use this data to lobby for a protocol exception because she has been asked to leave the Crizotinib study. We still have left over pills at home.
So I'll repost after we get more profiling information back and pathology. Tissue was sent for fancier profiling too (mRNA) and Fritz was putting an explant into a SCID mouse. We will know more within a week and they are presenting her at tumor board on Thursday.
I am so glad this surgery is over. I can't even begin to tell you. I was imagining this thing batting back and forth with every heartbeat.
Our game plan shifts now to what to do with medication / treatment. We feel the left lung met is still in a bad location - now burned at the site it was invading the pulmonary vein, but not really prevented from growing into there or a neighboring region again. A key question is if there is necrosis - if so, then we definitely want to be on Crizotinib again - and would recommend this drug to others. If not - options have been discussed - essentially gamma knife / IMRT to the lung met, send the films to Rolle again to see if he could take it out without losing the lobe (it is very peripheral) or Littrup (who had agreed to do it before - even though he did not know it was in the pulmonary vein... so at that time it could have been devastating).
Thanks again everybody.
She had the surgery yesterday. Dr. Brian Reemtsen is AMAZING. I'm posting from the PICU because UCLA Hospital has Wifi (yes!). Her time on cardiac bypass was only 13 minutes. Very thankful for this. Total surgery time a little less than 3 hrs.
She is sleeping now, but definitely much happier that she is gradually getting detubed and de-lined. We are in the PICU. After her nap, she's to be up in a chair and walking a few steps etc. You know the drill. She's been surprisingly chatty (more than after thoracotomies), and on her iPod and laptop this morning 'talking' to friends.
We hope to learn tomorrow whether there was necrosis. The 'thing' was very bizarre - an ASPS lung met had eroded into the pulmonary vein in one tiny spot - and was floating upstream in the pulmonary vein (normal blood and normal vein wall around it. It reach into the left atrium. The heart was not invaded, so thankfully no need to treat the heart.
The weird thing is that the surgeon said the 'thing' was "very soft and by gross appearance he thought necrotic. We will know tomorrow if it is. if it is, this is very good news - and hopefully we can use this data to lobby for a protocol exception because she has been asked to leave the Crizotinib study. We still have left over pills at home.
So I'll repost after we get more profiling information back and pathology. Tissue was sent for fancier profiling too (mRNA) and Fritz was putting an explant into a SCID mouse. We will know more within a week and they are presenting her at tumor board on Thursday.
I am so glad this surgery is over. I can't even begin to tell you. I was imagining this thing batting back and forth with every heartbeat.
Our game plan shifts now to what to do with medication / treatment. We feel the left lung met is still in a bad location - now burned at the site it was invading the pulmonary vein, but not really prevented from growing into there or a neighboring region again. A key question is if there is necrosis - if so, then we definitely want to be on Crizotinib again - and would recommend this drug to others. If not - options have been discussed - essentially gamma knife / IMRT to the lung met, send the films to Rolle again to see if he could take it out without losing the lobe (it is very peripheral) or Littrup (who had agreed to do it before - even though he did not know it was in the pulmonary vein... so at that time it could have been devastating).
Thanks again everybody.
Re: 'K'
'F', we are so happy that the surgery went very well and that no heart surgery was needed, at least some luck came along 'K' way. This floating met really sounds bizarre. How did they access it? Was it sternotomy or what. It is really good that you did not proceed with the cryo in the summer, who would have suspected it to be that way. Our best to 'K'.
Olga
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Fictional
Re: 'K'
Olga,
It is all very odd. They had great visualization with a special EKG-gated Cardiac MRI. Very fancy scan and had to be special ordered. We had to go to the UW to get it.
Surgeon entered through the right atrium, crossed the interatrial septum, and visualized in the left atrium - and saw it was not attached to the atrial wall at all - then he proceeded through the vein to its source. Freaky thing - but veins are very elastic and stretchable. They suspected and confirmed intraoperatively that the pulmonary vein that blood was flowing freely around the met. It was not in the main branch of the inferior pulmonary vein, but one of the secondary branches. The surgeon could see beyond that the vein was completely normal.
It was still a dangerous thing - because it was big - and could have snapped off the stalk and then obstructed the heart or had a met to the brain. We're very curious to see if it was indeed necrotic.
I found another case report of ASPS in a pulmonary vein. The question is if these arise mostly from lung or from a small met deposit from the blood.
This thing is not the pattern of cardiac mets seen in sarcomas. In our other forum member who has talked about her heart mets, she had invasive mets to the right ventricle - in at least 2 locations - and the right ventricle had to be completely reconstructed. These surgeons are absolutely amazing.
It is all very odd. They had great visualization with a special EKG-gated Cardiac MRI. Very fancy scan and had to be special ordered. We had to go to the UW to get it.
Surgeon entered through the right atrium, crossed the interatrial septum, and visualized in the left atrium - and saw it was not attached to the atrial wall at all - then he proceeded through the vein to its source. Freaky thing - but veins are very elastic and stretchable. They suspected and confirmed intraoperatively that the pulmonary vein that blood was flowing freely around the met. It was not in the main branch of the inferior pulmonary vein, but one of the secondary branches. The surgeon could see beyond that the vein was completely normal.
It was still a dangerous thing - because it was big - and could have snapped off the stalk and then obstructed the heart or had a met to the brain. We're very curious to see if it was indeed necrotic.
I found another case report of ASPS in a pulmonary vein. The question is if these arise mostly from lung or from a small met deposit from the blood.
This thing is not the pattern of cardiac mets seen in sarcomas. In our other forum member who has talked about her heart mets, she had invasive mets to the right ventricle - in at least 2 locations - and the right ventricle had to be completely reconstructed. These surgeons are absolutely amazing.
Re: 'K'
So the surgery was done through the vein overall or laporoscopic or VATS or as an open incision? They had to do a bypass somehow anyways...
another note -
I do not think that any oncologists would agree to add cardio scans as a part of the follow up even after this case...It would be very beneficial if the cases like that were published as the single case reports somewhere and get indexed for the Pubmed, for example published case of Brittany history of metastases and what was done every time to fix them with the result of the long term survival might result in the more aggressive treatment approach for the ASPS mets even when they are multiple/different organs located.
another note -
I do not think that any oncologists would agree to add cardio scans as a part of the follow up even after this case...It would be very beneficial if the cases like that were published as the single case reports somewhere and get indexed for the Pubmed, for example published case of Brittany history of metastases and what was done every time to fix them with the result of the long term survival might result in the more aggressive treatment approach for the ASPS mets even when they are multiple/different organs located.
Olga
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Fictional
Re: 'K'
Oh now I know what you're asking. She had a median sternotomy. By going through the right atrium, they did not have to pull the heart out.
I know this sounds dreadful, but she looks really good right now and she's only post op day 1. The surgeon says he makes the incision as small as possible and low - so the scar does not show with 'v-neck' sweaters etc. Fortunately she seems to heal well. They seal things nowadays with Dermabond whatever that is. Recovery from heart surgery apparently is less painful than thoracotomy. She has not needed an epidural - but she is on oxycodone.
I know this sounds dreadful, but she looks really good right now and she's only post op day 1. The surgeon says he makes the incision as small as possible and low - so the scar does not show with 'v-neck' sweaters etc. Fortunately she seems to heal well. They seal things nowadays with Dermabond whatever that is. Recovery from heart surgery apparently is less painful than thoracotomy. She has not needed an epidural - but she is on oxycodone.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 'K'
Dear 'F',
My heart and my very special thoughts have been so very much with dear 'K' and your family knowing that 'K' was probably having her surgery done as soon as possible after your last week's consultation with Dr. Reemtsen. I am so very grateful and relieved for the successful outcome of the surgery and that there was no heart involvement. I am so happy that 'K' seems to be recovering so well and is already feeling good enough to "chat" online with her friends, which I'm sure is the best "medicine" of all for a teenage girl
. She is truly an amazing young woman with an incredible spirit, personal strength, courage, and resilency. It is wonderful that she didn't require an epidural for pain and that she is able to get pain relief from just oxycodone. I will be anxiously awaiting the results of the pathology on the resected tumor, and holding very tight to Hope that it shows necrosis. In the meantime, please give your amazing little daughter a gentle hug from all of us Hesses, take care of yourself and try to get some rest, and know that dear 'K' and your family are held very close in our hearts.
Sharing the good outcome of 'K''s surgery with much relief, happiness, and continued Hope,
Bonni
My heart and my very special thoughts have been so very much with dear 'K' and your family knowing that 'K' was probably having her surgery done as soon as possible after your last week's consultation with Dr. Reemtsen. I am so very grateful and relieved for the successful outcome of the surgery and that there was no heart involvement. I am so happy that 'K' seems to be recovering so well and is already feeling good enough to "chat" online with her friends, which I'm sure is the best "medicine" of all for a teenage girl
. She is truly an amazing young woman with an incredible spirit, personal strength, courage, and resilency. It is wonderful that she didn't require an epidural for pain and that she is able to get pain relief from just oxycodone. I will be anxiously awaiting the results of the pathology on the resected tumor, and holding very tight to Hope that it shows necrosis. In the meantime, please give your amazing little daughter a gentle hug from all of us Hesses, take care of yourself and try to get some rest, and know that dear 'K' and your family are held very close in our hearts.Sharing the good outcome of 'K''s surgery with much relief, happiness, and continued Hope,
Bonni
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Fictional
Re: 'K'
40% Necrosis! That's pretty good - and what the heart met showed. We are going to try and use this path data to appeal to stay on Crizotinib as a protocol exception. Kgal looks great. Tons of walking today and it's only POD2. They're letting her go home tomorrow. The site is still tender, but she was happy to learn she can take tub baths because that area will be out of the water.
Will let you know when the molecular profiling results are back.
Will let you know when the molecular profiling results are back.
Re: 'K'
I'm filled with JOY from your good report, plus a little misty eyed. We will continue to pray for quick healing and that she will be allowed back into the trial. what a strong young lady. I hope to meet you both someday. Maybe when our girls are all cancer free!
Blessings,
Dotty
Blessings,
Dotty
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skyflower
- New Member
- Posts: 26
- Joined: Wed Sep 03, 2008 9:25 pm
- Location: Seattle, WA (previously Orange County, CA)
Re: 'K'
Congratulations 'K' 
Lucio and I hope you have a smooth recovery. We were very impressed with UCLA, did you have any trouble with doctors and interns waking you up in the morning (teaching hospital and all)?
Lucio and I hope you have a smooth recovery. We were very impressed with UCLA, did you have any trouble with doctors and interns waking you up in the morning (teaching hospital and all)?