Dear 'F',
This is WONDERFUL!! news about the 50% necrosis of the atrium tumor, and it should certainly give you good ammunition/evidence for your appeal to obtain an exception from the Crizotinib Trial for 'K' to be allowed back into the Trial. Thank you for sharing this very encouraging news in addition to the precious picture of 'K' in which she amazingly looks so fresh and beautiful in spite of the surgery and pain that she had just gone through! Her smile lights up my heart and refects the bright spirit within her. I Hope that her recovery continues to go well and that once she is discharged from the hospital tomorrow she and you will be able to soak up some of the warm California sunshine before returning to rainy Seattle. Please give 'K' a special High 5 and gentle hug from us Hesses.
Sharing the great joy of the very successful outcome of 'K''s surgery with much happiness, special caring, and continued Hope,
Bonni
'K' from USA - Dx 2007 at 10 years old
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
-
Fictional
Re: 'K'
Thanks for downsizing the photo Ivan.
She's out! We got out yesterday - yes, it is so hard being woken up so often in the hospital. We've always felt the best way to get better is to get out of the hospital as soon as possible.
She was presented at tumor board - and this may be of interest to you guys. She had a post-surgery chest CT (also 3 weeks of Crizotinib) and there was no rebound growth - so at least so far - in our experience, better than Sutent and even R1507 in this regard. She also had a large tumor removed although granted 1/2 of it was dead. I looked harder at the op report and also talked more with Brock who talked with the surgeon immediately after. I can't help thinking being on the met inhibitor helped here - I found 2 case reports of ASPS in the pulmonary vein - and usually it seems to come from the lung - and usualy it infiltrates the pulmonary vein and even invades the heart. For the past 5 months she's been on Crizotinib - and maybe after it punched through into the vein space - the Crizotinib prevented it from invading the vessel wall even when the think floated up into the left atrium. On the echo, it was flopping around with each beat of the heart and (I know this is gross) when it was lifted out, it broke in 3 pieces and was necrotic). There were still mitoses in there though, so we are going to have to be watchful for new metastases. Another thing the cardiac surgeon did (didn't know this was possible) - he proceeded up through the vein "well into the lung mass" and was cauterizing. He then also did extensive washings (she had to be transfused) to avoid tumor cells escaping. Needless to say, we want to be back on Crizotinib.
We also know that left lung met is probably not dead. At tumor board, all were discussed including cryo. It was thought to be too close to the atrium. So what they are proposing is essentially gamma knife to that one nasty left lung met - it is her biggest met and just in a nasty area sitting on top of the pulmonary vein. The reason you haven't heard of gamma knife to the lung before is because it's called SBRT or stereotaxic body radiotherapy.
http://www.medscape.com/viewarticle/718760
Here's the UCLA page on SBRT: http://radonc.ucla.edu/body.cfm?id=61
Our peds onc says it generally works with little side effects - the mass doesn't go away, but it usually stops growing. He said the only complication he has seen has been in the brain - if a brain nuclei near by gets injured with swelling or something like that. If it continues to grow, then you can still try ablation or surgery - it doesn't eliminate other options. The total dose to the lungs is much lower - and in dd's case, they think it can be done in just 3 days. We are hoping to do that before she is due to fly back home (she's in CA still for her 1 week postop check).
On the Crizotinib front - also thought I'd share what we're up to. Every doc we know recommends resuming Crizotinib, but she is officially out of the study - and the Pfizer trials coordinator said they cannot do any more forward looking protocol exceptions. But - that being said, the Pfizer trials guy said there are many people who have been permitted to be on individual use allowed to continue receiving the drug. And we are trying to figure out how to do that. I will let you know if we can.
Our docs tell us - they don't want to file a single use compassionate IND with the FDA because of the dangers that come from an audit etc. (this is too long a story to go into) - and I don't really know the paperwork, but I believe them. They are calling around - really trying to help us - and trying to see who else has it and is willing to do this - they don't think any COG member will want to do this (I know this sounds crazy).
Meanwhile we should also be getting some of the molecular profiling data back - to see what remaining markers are there. 'K' is so happy to be out - and she did get out the morning of POD#3 (postop day 3)! She is walking to the store and areas around Westwood with Brock - just moving a little gingerly.
She's out! We got out yesterday - yes, it is so hard being woken up so often in the hospital. We've always felt the best way to get better is to get out of the hospital as soon as possible.
She was presented at tumor board - and this may be of interest to you guys. She had a post-surgery chest CT (also 3 weeks of Crizotinib) and there was no rebound growth - so at least so far - in our experience, better than Sutent and even R1507 in this regard. She also had a large tumor removed although granted 1/2 of it was dead. I looked harder at the op report and also talked more with Brock who talked with the surgeon immediately after. I can't help thinking being on the met inhibitor helped here - I found 2 case reports of ASPS in the pulmonary vein - and usually it seems to come from the lung - and usualy it infiltrates the pulmonary vein and even invades the heart. For the past 5 months she's been on Crizotinib - and maybe after it punched through into the vein space - the Crizotinib prevented it from invading the vessel wall even when the think floated up into the left atrium. On the echo, it was flopping around with each beat of the heart and (I know this is gross) when it was lifted out, it broke in 3 pieces and was necrotic). There were still mitoses in there though, so we are going to have to be watchful for new metastases. Another thing the cardiac surgeon did (didn't know this was possible) - he proceeded up through the vein "well into the lung mass" and was cauterizing. He then also did extensive washings (she had to be transfused) to avoid tumor cells escaping. Needless to say, we want to be back on Crizotinib.
We also know that left lung met is probably not dead. At tumor board, all were discussed including cryo. It was thought to be too close to the atrium. So what they are proposing is essentially gamma knife to that one nasty left lung met - it is her biggest met and just in a nasty area sitting on top of the pulmonary vein. The reason you haven't heard of gamma knife to the lung before is because it's called SBRT or stereotaxic body radiotherapy.
http://www.medscape.com/viewarticle/718760
Here's the UCLA page on SBRT: http://radonc.ucla.edu/body.cfm?id=61
Our peds onc says it generally works with little side effects - the mass doesn't go away, but it usually stops growing. He said the only complication he has seen has been in the brain - if a brain nuclei near by gets injured with swelling or something like that. If it continues to grow, then you can still try ablation or surgery - it doesn't eliminate other options. The total dose to the lungs is much lower - and in dd's case, they think it can be done in just 3 days. We are hoping to do that before she is due to fly back home (she's in CA still for her 1 week postop check).
On the Crizotinib front - also thought I'd share what we're up to. Every doc we know recommends resuming Crizotinib, but she is officially out of the study - and the Pfizer trials coordinator said they cannot do any more forward looking protocol exceptions. But - that being said, the Pfizer trials guy said there are many people who have been permitted to be on individual use allowed to continue receiving the drug. And we are trying to figure out how to do that. I will let you know if we can.
Our docs tell us - they don't want to file a single use compassionate IND with the FDA because of the dangers that come from an audit etc. (this is too long a story to go into) - and I don't really know the paperwork, but I believe them. They are calling around - really trying to help us - and trying to see who else has it and is willing to do this - they don't think any COG member will want to do this (I know this sounds crazy).
Meanwhile we should also be getting some of the molecular profiling data back - to see what remaining markers are there. 'K' is so happy to be out - and she did get out the morning of POD#3 (postop day 3)! She is walking to the store and areas around Westwood with Brock - just moving a little gingerly.
Re: 'K'
Hello 
I am so happy she is out and feeling better!
Take her to Stans donughts in the village hehe I know its not healthy but omg it is so good!
I am sorry it has taken me so long to post but my working has been keeping me from posting and though I was silent i was smiling big and so so happy hearing all that was taking place with this sx and there findings...
*hugs and smiles*
I am so happy she is out and feeling better!
Take her to Stans donughts in the village hehe I know its not healthy but omg it is so good!
I am sorry it has taken me so long to post but my working has been keeping me from posting and though I was silent i was smiling big and so so happy hearing all that was taking place with this sx and there findings...
*hugs and smiles*
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: 'K'
'F' - I checked the link you posted about the proposed radiation treatment for this lung met located close to the heart. It is not the Gamma Knife (as GammaKnife uses different type of the emitters for irradiation as a source - cobalt-60 and is only capable of treating cranial lesions) but they use Novalis unit (it is a X-Ray based unit produced by the BrainLab, very high quality positioning, we have talked about it in the past - Okunieff was the primary doc in US with the most experience but it has been around for awhile and there are many people with the sufficient experience now). The problem is that the previous irradiation does complicates the surgery if it ever needed.
Olga
Re: 'K'
I was trying to relocate the part of the discussion that was more general to the different forum to make this topic about 'K' history more readable overall and it looks like it got lost in the process...
I am curious about the stereotactic radiation treatments at UCLA - I know they used CyberKnife for the lungs application before and now they moved to Novalis platform? At some point I was trying to compare these two as they are using the same rad.source - I was interested in 2 things - 1. what unit has less rad. scattering so the next tissues would be less damaged, 2- what unit has better targeting with less deviation so they need to add less margins for the reliability (and cover smaller spot overall - for example to cover 20 mm in a breathing lung you would need to add 10 mm around it it makes it 40 mm diameter or more) but the info seemed to be concealed somehow.
I am curious about the stereotactic radiation treatments at UCLA - I know they used CyberKnife for the lungs application before and now they moved to Novalis platform? At some point I was trying to compare these two as they are using the same rad.source - I was interested in 2 things - 1. what unit has less rad. scattering so the next tissues would be less damaged, 2- what unit has better targeting with less deviation so they need to add less margins for the reliability (and cover smaller spot overall - for example to cover 20 mm in a breathing lung you would need to add 10 mm around it it makes it 40 mm diameter or more) but the info seemed to be concealed somehow.
Olga
Re: 'K'
I'm so happy to finally see 'K'! she's very beautyfull and so gentle!
You were soooo brave! I'm late with reading Your and others' updates, please forgive me,
and keep in mind that I think of You and walk with You.
Now I'm sending You special sunbeam
I hope You are all well. Send big big big hugs to 'K'!
Thinking of You
You were soooo brave! I'm late with reading Your and others' updates, please forgive me,
and keep in mind that I think of You and walk with You.
Now I'm sending You special sunbeam
I hope You are all well. Send big big big hugs to 'K'!
Thinking of You
Re: 'K' from USA - Dx 2007 at 10 years old
Mania, F no longer participates in the forums. She decided to leave because (my understanding) she felt that myself and others here were not accommodating enough to a wide spectrum of opinions. I'm sure she still reads the board, so hopefully she can pass on your well wishes to K.
After F left the forum, we did not have any direct contacts with her. Unfortunately, after sometimes we found that K tragically lost her battle with ASPS, and we are deeply sorry about it.
After F left the forum, we did not have any direct contacts with her. Unfortunately, after sometimes we found that K tragically lost her battle with ASPS, and we are deeply sorry about it.
Re: 'K' from USA - Dx 2007 at 10 years old
I'm so sorry for your families loss
Debbie and family
LoveBonni Hess wrote:I am correcting/clarifying Debbie's reference to 'F''s daughter 'K' as now being 19 since devastatingly 'K' tragically lost her very courageous 7 year ASPS battle in 2014 at age 17. With special caring thoughts and continued Hope, Bonni
Debbie and family
Debbie