George From China - Dx 2007

[D.ap]

Lynette
Maybe Olga can answer this for us :
We're taking some clinical tral (stage I) TKI which is very similar to Sutant developed here, but I don't know the English name of it, there is only a number. I will look it up and let you know later. The pathology report translated by Prof. Rolle says "A mean of 8 mitosis were observed. 80% of the metastases showed vital cells of ASPS, 20% showed regression like necrosis, fibrosis or cystic areas." But I'm not sure if the conclusion is drawn based on each mets. From the German pathology report, I can't see that. I need to do more study to find it out...

Also when cryo was done on George several years ago was it on this lung?
If so maybe the neurcrosis is a result of that and the implant?
Healing wishes to you and Jorge too

Debbie

[Olga]

Debbie, when cryo is done, the necrosis of the treated met is usually 100% (unless they missed it). The 20% necrosis in some of the mets is hard to assume to be a result of the treatment or not as it is very typical for ASPS tumours and mets to have some amount of spontaneous necrosis in them as a result of their faulty blood vessel supply - you can usually find out the notice about some % of necrosis in the pathology report from any of the ASPS surgery to remove tumors, treated or not - and the bigger they get, the more necrotic tissue is there.

[D.ap]

Lynette

How is Georges progress with his lung fluid ?
How are you both doing after the surgery ?
There seems to be common feeling amoungst alot of the families after major surgery/surgery. We feel very happy that is over with and we've made progress, however we feel like we should be doing more. Take this time to catch up on your sleep and also enjoy each other and your families and friends ! The rest will follow.

Much love
Debbie

[Jorge]

Dear Debbie,
Thank you so much for your care about George.

He didn't have lung fluid from the laser sugery. He had the lung fluid after last Cryoablation, but it was gone after it was drained--too much (~1000ml) that couldn't be absorbed by itself.
He started to go to work after we came back although there is some pain. He doesn't need the pain killer so I think it's okay.
Yes, I complete agree with you on the feeling after surgery. We feel very happy and relieved although I know it's not over yet for us. I have to think about the alternative TKIs and the sequence/shedule to take them. Still a lot to worry about, but the success of the laser surgery is definately an mood adjustment to make us feel happy and confident.

Sorry for my poor/plain words. But I really appreciate everyone for your help and care and have gratitude to this great community! You all in my minds and healing wishes to all of you.

[D.ap]

Lynette
So glad to hear that Jorge is adjusting after surgery
I assumed there was fluid in lungs. The cough . Your English is great. Better than I could translate if I were in your shoes
Thanks for the update
Debbie

[D.ap]

Lynette

Did not soak in to what you said about the fluid--woo a qrt of fluid! No wonder it was so miserable and hard to deal with for Jorge. How long after cyro did it take for the fluid to build up? Is that given as a possiblity prior to surgery and last question was it a result of sugery or some side effect of a medicine ?
I am sorry that he had to go through the experience. He is one brave guy

Have a great day-looks like your weather is comparable to ours in USA, Kansas..warm

Debbie

[Jorge]

, I see.
I never think of this may be the reason, as the Doctor never mentioned this to us when we were in the hospital.
We happen to plan to have a CT scan tomorrow. We will find it out.

Thank you for the reminder.

Have a nice weekend

Lynette
So glad to hear that Jorge is adjusting after surgery
I assumed there was fluid in lungs. The cough . Your English is great. Better than I could translate if I were in your shoes
Thanks for the update
Debbie

[Jorge]

No, it was not that bad. He didn't feel apparent uncomfortable until he had a CT 3 days after the cryo! He was just kind of short of breathe with red face at that time. We thought it was the side effect of the hexadecadrol--he was still having swelling--the side effect of Brain Gama knife.
However, it's true that he is very tough. The only thing beat him down so far is the swelling of the brain mets. So everyone please be extreamly careful about this, have the brain MRI properly.

The middle of China is in a "toast mode" now. But the weather in the south is very pleasent. It rains frequently and the Typhoon also brings down the temperature. We're lucky

Lynette

Did not soak in to what you said about the fluid--woo a qrt of fluid! No wonder it was so miserable and hard to deal with for Jorge. How long after cyro did it take for the fluid to build up? Is that given as a possiblity prior to surgery and last question was it a result of sugery or some side effect of a medicine ?
I am sorry that he had to go through the experience. He is one brave guy

Have a great day-looks like your weather is comparable to ours in USA, Kansas..warm

Debbie

[Jorge]

Hi Bonnie & Olga,

As we know, the most promising TKIs--Cediranib, Sutant & Pazopanib are VEGFR inhibiter. Do you know some other TKIs which have different targets that may also work for ASPS?
I want to try some TKI of different target to see if they can also work.

Thanks in advance for your time. Your inputs will be highly welcome.

Have a nice weekend

Lynette

[Olga]

Сabozantinib (Cometriq) look here:
http://www.cureasps.org/forum/viewforum.php?f=66
other TKI are sorafenib and
but you have to be careful with the very concept of "trying" and "work". You do not know if taking TKI is going to be beneficial for the patient in a long run, i.e. if it is going to increase the life of the patient, his OS (overall survival). When drug works at all (active in certain disease and in certain patient) it simply means that it has some positive effect on the disease at least temporarily - like it stops the disease from progressing or even reduces the size of the disease - but after that when/if the resistance develops (and it is almost uniformly develops with the TKI as the body compensates for the blocked targets) the new growth rate might be faster than before and not only the time advantage could be lost but also the overall survival time might be less than if the patient would not take the drug at all. I.e. his disease would be slowly progressing instead of having some stop or slow down and then running out of control.

The place of the TKI in the overall treatment scheme for ASPS is not known yet. It looks to be beneficial in cases when the stage of the disease is very advances and survival outlook is grim so any time advantage would be a gift. Or when there is a need for the surgery/other local treatment but the size of the tumor does not allow the treatment and taking TKI might reduce the size and allow it to be treated/removed.
What is your current goal for George.

[Jorge]

Hi Olga,
I agree with you on the resistance of some TKI. We're also very afraid of the rebound once the resistance develops.
The reasons to try other TKI are:
Protect the effective TKI from resistance by switching to other TKI of other targets, so that we can re-use it when necessary.
Evaluate the new drug when there is still solid tumor.
Find a safe way (no rebound) to quit TKI.

So we might take some TKI for a while after the surgery and hope the low tumor burden will have less rebound. Then we can quit it.

[D.ap]

Lynette
How are you both doing today ? How's the insicion looking?
Was the CT scan able to reveal anything about the cough?
One last question: are you planning on going back to Dr Rolle to treat the other lung after you take the chosen TKI?
Debbie

[Jorge]

Thank you, we're fine. It's getting hotter. Here are the quick replies to your questions:
The incision is healed with scab on it.
The radiology doctor says he can't see anything could cause the cough through the CT san. NO liquid. Maybe a little inflammation where it was operated? On the CT, most of the holes (where the mets were resected) are empty, but there is one or 2 holes don't look like empty. I guess that is the inflammation?
We're going to do the left side in September.

Thank you for your care. Healing wishes to Josh.

Lynette

[D.ap]

Lynette
Glad to hear that there is no complications
The CT scan was done with contrast? The resected mets that looked empty were opague , and empty?
As I understand it the first scan will look bigger then the scans after that will continue to get smaller as the resection heals
So glad Jorge is healing
Take care
Debbie

[Ivan]

Thank you, we're fine. It's getting hotter. Here are the quick replies to your questions:
The incision is healed with scab on it.
The radiology doctor says he can't see anything could cause the cough through the CT san. NO liquid. Maybe a little inflammation where it was operated? On the CT, most of the holes (where the mets were resected) are empty, but there is one or 2 holes don't look like empty. I guess that is the inflammation?
We're going to do the left side in September.

Thank you for your care. Healing wishes to Josh.

Lynette

If the metastasis is small, Dr. Rolle just burns it without resecting it. Therefore, the scar is left behind and it can be over 5mm in size easily. It can stay there forever, or dissipate slowly over time.