George From China - Dx 2007

[D.ap]

Lynette and George

We are so glad to hear of the surgery AND the recovery of George's
Thank you also for the news on Dr Rolle!

Happy days for everyone !
We all are praying for continued success on the brain mets and the recovery

Much love
Debbie

[Bonni Hess]

Dear Lynette,
I am so deeply grateful, happy, and relieved that George's 2 frontal brain mets were able to be successfully resected and that he is having such a speedy and good recovery from the surgery As strange as it may seem, Brittany too found her brain surgeries to be much easier than her other innumerous resections in terms of post-op pain and recovery. I Hope that George's good recovery continues with him quickly regaining strength and energy. I know that it is currently unknown/unproven whether or not TKI drugs can/do cross the blood brain barriar to prevent new brain mets, and I am personally aware of a couple of ASPS patients who unfortunately had continued brain met progression while taking TKI treatment. However, Brittany has now thankfully had 57 months with no new brain mets since beginning her Cediranib treatment in April 2009, and prior to her Cediranib treatment she was heartbreakingly having increasing development of new brain mets so it seems that the Cediranib has certainly helped to stabilize the situation at least thus far. Of course, we are painfully aware that can change at any time if she develops resistance to the Cediranib, so we continue regular scheduled brain MRI's with the next one scheduled for March 17th. I am not personally familiar with the BKM120 drug which you mentioned, but will be anxious to learn more about it, and very Hopeful that it will prove to be an effective systemic treatment for ASPS. Take care dear Lynette, give yourself and George happy hugs from me, and keep in touch as you are able.
Sharing the great relief and happiness of George's successful brain met resection and good recovery with much joy, special caring, healing wishes, and continued Hope,
Bonni

[D.ap]

Lynette and George

We are hoping this day brings you joy and healing
How is George feeling? How are you doing?

Write when you can
Love
Debbie and family

[D.ap]

Hello my friends,
I'm very glad to update that George had a very sucessful surgery last Thuesday with the 2 frontal lobe mets resected! We're also very surprised by the recovery. This surgery is much easier than the thoracotomy for George. He could get up and walk after the drainage tube was removed 3 days after the surgery. He feels like normal today!

Bonnie,
We're also considering taking some TKI. As you know, new mets kept appearing when he was taking Cediranib, Pazopanib (+sirolimus) and I've seen a ASPS patient here progressed to the brain when Sutent worked for her. So what left to me is Cabozantanib only.
I'm also thinking about BKM120. Some Renal Cell Cancer patients take it and it works to shrink the brain mets. Have you seen any ASPS patients using this drug?

Thanks everyone for your care.
Lynette

Hello Lynette and George

I hope George is continuing to feel better with each day
I've been looking for articles on the BKM120 and found this

http://clinicaltrials.gov/ct2/show/NCT01339052

It looks like it is in its early infancy here in the US


Write when you are able

Love
Debbie

[D.ap]

Lynette and George

A paper written on BKM120 by Dr Federman of UCLA.
I believe Dr Federman has several ASPS patients that he is seeing in his area. Joshua at one point has flown out and talk to him in person.




http://static.squarespace.com/static/51 ... ivals%20Un

Debbie

[Ivan]

George, hope you are doing well. Do you have any neurological symptoms from the extensive treatment you've had for the brain mets?

[Jorge]

Hello everyone,

I have a lot to udpate on George.

George just had the second neurosurgery last Friday, resecting 4 mets on the occipital lobes--3 of the mets failed to response to Gama Knife and started growing. The surgery is successful but the central visual field is damaged. Not sure if it will be better later. There are again new mets in the brain, so we have to do Gama Knife again to control it for the short term. I'm also trying to contact Heidelberg Ion-Beam Therapy Center (HIT) to see if they will accept George to treat the remaining brain mets. The Gama Knife is proved to fail on George.

New mets are found on both lungs in Feb, biggest 6mm. I think it can't appear suddenly, the earlier CT missed them. The abdomen CT reports suspicious low density nodes in the liver, biggest 5mm. I read the CT by myself, I can only find one. But I will take it to some other radiologist to compare it with the earlier scans.

Considering all the updates above, we're considering TKIs seriously. Actually, I've ordered them. XL184+BKM120. There are not many Sarcoma cases to refer to, but they have better BBB penetrability on lung Cancers. Not sure if it's the right call.

Ivan,
The main sequela till now is the eyesight and visual field damage. And slightly memory deterioration. Intelligence or conigtive function, hard to tell.

[Olga]

Lynette, thank you for an update. I hope the visual fields will improve as the swelling goes down, sometimes the effects are reversible.
Do not be that discouraged by the Gamma Knife failure - technically it can not fail i.e. it destroys the target, the problem might be if the target is bigger than the coverage with the optimal dose - the mets were to big, or they missed the target - zipped the area close to the met or partially the met and partially the area next to it. The key is the volume of the procedures the facility performs, the high technical level of the unit and software and the proper quality control feedback - i.e. they follow the cases and review the results and do the needed adjustments.
Do you know about another option to treat brain mets - LITT? It is a local ablation using thin probe that emits laser, inserted trough the skull into the met. It is like cryo or RFA for lung/liver mets. It is done in Vancouver by Dr.Toyota Ivan's neurosurgeon, in Germany in some places, in US by Dr.Black in Boston (Brittany Hess had it done at some point). The advantage is less radiation damage than from the GammaKnife or other types of the radiosurgery, the disadvantage is being more invasive.
Are you going to use these two drugs in combination? We have one member on XL184 now who is having a response, but not on BKM120, but I have something about a person with angiosarcoma who had a response to it, I do not know the location though.

[D.ap]

Hi Lynette and George

I am so sorry for the scan results
In reference to the lung scan The 6 mm nodule. You've had laser surgery on George's lung in October ? Which lung? If not his lung where the growth has taken place maybe rebound growth?
Pneumonia ?

Thinking of you both
Love
Debbie

[D.ap]

Lynette and George
If need be liver section on forum

http://www.cureasps.org/forum/viewforum.php?f=41

Debbie

[D.ap]

Hello everyone,

I have a lot to udpate on George.

George just had the second neurosurgery last Friday, resecting 4 mets on the occipital lobes--3 of the mets failed to response to Gama Knife and started growing. The surgery is successful but the central visual field is damaged. Not sure if it will be better later. There are again new mets in the brain, so we have to do Gama Knife again to control it for the short term. I'm also trying to contact Heidelberg Ion-Beam Therapy Center (HIT) to see if they will accept George to treat the remaining brain mets. The Gama Knife is proved to fail on George.

New mets are found on both lungs in Feb, biggest 6mm. I think it can't appear suddenly, the earlier CT missed them. The abdomen CT reports suspicious low density nodes in the liver, biggest 5mm. I read the CT by myself, I can only find one. But I will take it to some other radiologist to compare it with the earlier scans.

Considering all the updates above, we're considering TKIs seriously. Actually, I've ordered them. XL184+BKM120. There are not many Sarcoma cases to refer to, but they have better BBB penetrability on lung Cancers. Not sure if it's the right call.

Ivan,
The main sequela till now is the eyesight and visual field damage. And slightly memory deterioration. Intelligence or conigtive function, hard to tell.

Hi you guys--( guys is an endearing term in the midwest)

I hope your doctor has suggested that you give George time to recover from his surgery. I have no idea how long..

I have found a link that has sugessted surgery as a treateatment even with multiple brain lesions?
With the sarcoma reaching the brain we must be veligent in the scans as well as taking care of them at the smallest size. Chemo and radiation are still not a proven treatment as I understand it but I certainly could be wrong. I want to be wrong

All my love and hope for a cure

Debbie

www.ncbi.nlm.nih.gov/pubmed/23336381

[Jorge]

Hi Debbie,

Thanks so much for your care and the info you provid.

Thank God, George is very strong so he always recover quickly from the surgeries. He walked 5 km everyday before the second neurosurgery and now he's started to walk to help with the recover now.
We plan to have the Gama Knife about 2 weeks after the surgery to minimize the effect by the radiation. Or it can be much worse when the new mets grow up.

The biggest met is on the right lung, operated in Jun 2013. This is to be expected. The suspicious liver spots are very small now, We will focus on the brain for now. And if the TKI works, they may disappear as well.

Debbie, you're right about the chemo and radiation on the brain mets. That's why I'm so depressed...

[D.ap]

Hi Lynette ,

I was worried that you weren't able to read the link.
I am so sorry that you and George have to go through this recovery
We are here for you BOTH . Please sleep on the information and make a determination on treatment in the morning.
Please know we are all thinking of you both..
Love
Debbie

[Amanda]

Lynette an George
Sending you both a huge hug!!!!

[Jorge]

Lynette, thank you for an update. I hope the visual fields will improve as the swelling goes down, sometimes the effects are reversible.
Do not be that discouraged by the Gamma Knife failure - technically it can not fail i.e. it destroys the target, the problem might be if the target is bigger than the coverage with the optimal dose - the mets were to big, or they missed the target - zipped the area close to the met or partially the met and partially the area next to it. The key is the volume of the procedures the facility performs, the high technical level of the unit and software and the proper quality control feedback - i.e. they follow the cases and review the results and do the needed adjustments.
Do you know about another option to treat brain mets - LITT? It is a local ablation using thin probe that emits laser, inserted trough the skull into the met. It is like cryo or RFA for lung/liver mets. It is done in Vancouver by Dr.Toyota Ivan's neurosurgeon, in Germany in some places, in US by Dr.Black in Boston (Brittany Hess had it done at some point). The advantage is less radiation damage than from the GammaKnife or other types of the radiosurgery, the disadvantage is being more invasive.
Are you going to use these two drugs in combination? We have one member on XL184 now who is having a response, but not on BKM120, but I have something about a person with angiosarcoma who had a response to it, I do not know the location though.

Hi Olga,

Thanks for providing the info of this new approach. I should read more on the other section of this community!
I'm looking for this ILT in Germany--it's much more affordable for us to do it in Germany than in the north American
I'm searching, but it's quite difficult for me to find something useful in the English world. It will be greatly appreciated if you know anything about the hospital, surgeon doing ILT in Germany.
By the way, how much does it cost in Vancouver?

Thanks and best wishes to you and your family.
Lynette