George From China - Dx 2007

[Olga]

Lynette, I am not sure where to find a place with the sufficient experience in Gernany for the LITT application fore recurrent brain mets, may be Prof.Vogl can hel you, he is the head of the radiology in Frankfurt and he writes books on use of diff types of ablative techniques for diff cases - explain the problem to him and ask what place has most experience in LITT application for recurrent brain mets. This is his page:
http://radiologie-uni-frankfurt.de/cont ... x_eng.html
and you can contact him trough his secretary from this page:
http://radiologie-uni-frankfurt.de/content/e6796/e4489
they all speak Engl.
I do not know the cost of this treatment here in Vancouver for non-residents. We can probably ask Dr.Toyota secretary.

[D.ap]

Hi Lynette and George,

Hope this day has brought you closer to some descions..
Here is the link from the home page on LITT

http://www.cureasps.org/2010/05/
Please know that we ae thinking of you both

Love
Debbie

[Jorge]

Thanks Olga for the info you provided!

From the resume of Prof. Vogl, looks like he's a really big guy. A professor as big like him must be very busy! Anyway I will send him an email to ask for pre-evaluation of the ILT performed at his hospital—according to the link by Debbie, Prof. Vogl is most experienced intervenional radiologist in using LITT. Thank you, Debbie & Dr. Yosef.

I also followed the ILT thread and found 2 open clinical trial in USA of ILT/LITT to treat brain tumor:
http://clinicaltrials.gov/ct2/show/NCT0 ... ILT&rank=1
http://clinicaltrials.gov/ct2/show/NCT0 ... apy&rank=3

The first one is opening in Brigham & Women's Hospital, where Brittany tried it years ago. I will contact that hospital to see if they would like to evaluate George in the meantime. If they accept him, the treatment will be free, right? That will be very attractive.

There is always hope out there. Everyone please don't give up and continue to explore for more weapons to fight ASPS.

Best wishes to all,
Lynette

[Bonni Hess]

Dear Lynette,
Thank you for the thoughtful updated information about your search for treatment options for George. I am so grateful that you have found a couple of promising resources to explore for treatment of Geroge's brain mets, and will be anxiously awaiting your update on your treatment decision. I understand that treatment of George's brain mets needs to be your highest priority, but I would also like to encourage you to not wait too long to address treatment of the liver mets since ASPS liver mets can grow quite rapidly and need to be treated at the smallest possible size for the greatest chance of a successful response. Brittany's liver met was able to be successfully treated and destroyed with Radiofrequency Ablation (RFA) which only required a short hospital stay, and from which she thankfully had a very speedy recovery. Perhaps this is something which you could pursue and schedule while awaiting responses from Professor Vogl and Brigham and Women's regarding treatment of George's brain mets. Take care dear Lynette and give George and yourself special hugs from me.
With special caring thoughts, healing wishes for George, and continued Hope,
Bonni

[Jorge]

Thanks Bonnie for your thoughtful remind.

I took the abdomen CT (done in end of Feb) to see a cryoablation doctor half a month ago. But he could barely tell it's a met or not--the suspicious spots are very small and vaguely. He suggest we monitor it for now and do a MRI later. Do you think the MRI should be done with contrast or not?

He also read the lung CT with me. The report said the biggest met is 6mm, but we coudn't find a 6mm met. We coudn't find more than 5 mets in the lung, all are very small, less than 5mm I think.

By the way, George had a ECT in Feb when he was in hospital had the neurosurgery. Nothing related to ASPS. He also had a pelvic MRI in March, nothing found. He had a Gama Knife after the second neurosurgery to treat the reported new mets. But it turns out the 5 small mets left have been there since last Augst!!! Such a great news to us! But, dramatically they found another new mets in the temporal lobe, developed just in 2 weeks from none to ~8mm!! I can't believe it can grow so fast. We went to some doctors, but they all think it's ASPS. It's really dramatical, can never get a happy ending easily.

[D.ap]

Hi Lynette

That was good news that the image showed 5 mets back in August. No change I assume.

About the 8mm growth..

The doctors know about the ECT, right?
The scan was an MRI with contrast?

Aneurysms can develop after an ECT, also. George had been on pazonib , which is known to cause possible bleeding, prior to the surgery and then to have the ECT procedure?

Maybe not ASPS?

We are with you all hoping not.

Love
Debbie

[D.ap]

Lynette and Georg
A link for symptoms of an aneurysm
Please check with doctors as soon as humanely possible

http://www.bafound.org/warning-signs-symptoms
Much love and concern
Debbie

[Olga]

Debbie, Ivan's brain met (that was resected past June 2013) also grew very fast from nothing to almost 10 mm...

[D.ap]

Hi Olga

I was surprised because Lynette was talking about a 2 week time frame .
Maybe I read that wrong ?

Thanks
Debbie

[Olga]

I missed that - about two weeks, it is highly unusual for ASPS met to grow that fast. I would review all the scans before to see if it was actually there but missed, or it might be not a met.

[Jorge]

Debbie & Olga, I totally agree with you two. ASPS can't be so aggressive to grow that fast!

George just underwent 2 neurosurgeries, so the MRI scans were very frenquently done. He had a positioning MRI with contrast (the mets to be removed are very small and kinda deep) before the surgery on March 20 in the resolution of 2mm. Nothing was found in that area. He had MRI before discharging from the hospital in Mar 31th, a spot of ~4~5mm showed up even in the images without contrast! The MRI for Gama Knife in Apr 4th showed the spot is ~8mm, so the doctor consider it as a ASPS met but didn't treated because it's not accessible to their Leksell-C machine.

George just has an MRI this morning to follow up this met--We look like crazy or over aggresive to do the MRI so frequently. But if it is ASPS, we have to react soon.
I will update you the result tomorrow.

By the way, about the LITT/ILT treatment in brain, Dr Thomas Vogl replyed "we do not offer LITt in the brain. the only method we are offering is a regioanl chemoperfusion of the brain mets with chemotherapy drugs." I asked him to recommend some place that do LITT in the brain in Germany, he said "no one is doing currently litt in brain mets only in surgery". But I did find some article of LITT in Brain from someone in Munich unitversity hospital...
I also get reply from Birmingham Women's hospital to ask me to send them the image CD

Wish me luck and best wishes to all of you.
Lynette

[Bonni Hess]

Dear Lynette,
I am so grateful that you and George are being so pro-active in aggressively pursuing and obtaining frequent brain MRI scanning which is so critically important for patients who have a history of ASPS brain mets. I am painfully aware that ASPS brain mets can grow much faster than ASPS mets in other parts of the body and therefore require much more frequent monitoring with MRI scans, which is why we insist on having Brittany's brain MRI's every three months despite the initial recommendation and resistance of her radiation oncologist and the insurance company who ultimately thankfully agreed to the 3 month schedule based on our provision of anecdotal experience data on this issue. However, I am not personally aware of ASPS brain mets having grown as rapidly as George's concerning now 8 mm. lesion has, and I am holding very tight to Hope that it is not an ASPS met as the doctor suspects, but rather some type of benign lesion. I will be anxiously awaiting your update on today's MRI results, and am sending my most positive thoughts and very best wishes your way.
With deepest caring, special hugs, healing wishes for George, and continued Hope,
Bonni

[D.ap]

Hi Lynette when time allows

What is a

Leksell-C machine?

Hope the day brought you good news.

Much love
Debbie

[Jorge]

Hello all my friends,

I can't wait to update you the good news--the suspicisous spot is gone/disappear from the MRI scans yesterday!!! I ask the radiologist to double check, there is nothing in that area! YAY

It's a completely reverse and relief. I think we can relax for a while after the intense endeavor in the passing year

It's the laser surgery that give us the chances to fight this disease! I have to thank this great community and everyone here, especially Olga, Bonnie and Debbie, Amanda. Without your the help and encourage, we can't achieve this. I also want to thank Ivan and Connie for your generous share of the experience post-surgery & the life in Coswig and everyone that generous share their experience fighting ASPS. Words can't express my gradtitude!

Good luck and best wishes to all,
Lynette

[Olga]

Lynette, congratulations! Thank you for the kind words, we are glad to be of help to George and you. About the spot disappearing - it might have been a technological artifact, or some kind of treatment related inflammation or something else - we have to know the typical behavior of the ASPS mets to raise a proper question when the finding does not appear to match it. We already had few cases in our community of false positive findings with the suspected speedy fast growing mets - couple of suspected liver mets turned out to be a treatment induced changes, the lung met turned out to be pneumonia, the brain met turned to be a radiation necrosis etc. so it happens. Information sharing helps a lot as ASPS is so rare that drs can not have enough of personal experience with ASPS patients.