George From China - Dx 2007

[Jorge]

Hi Bonnie and Olga,

I have the paraffin I got from the laser surgery tested and I get immunohistochemical VEGF(+), which is very good and give us much confidence to try other VEGFR inhabitors.
But the hospital here can't test c-MET here. I'm wondering if VEGF(+) and c-MET(+) can happen at the same time? Hav you ever seen anyone with VEGF(+) and c-MET(+) simultaneously?

Thank you!

[Bonni Hess]

Dear George,
Brittany's tumor tissue testing which was done several years ago showed that her tumor tested high for VEGF-R and fairly low for c-MET so apparently ASPS tumors can contain both elements to different degrees. We personally think that this is why Brittany had a failed response to the ARQ-197 drug which targets c-MET, and a much more positive, successful, and sustained response to Cediranib which targets VEGF-R. The ARQ-197 Clinical Trial oncologist was very skeptical and unsupportive about our having Brittany's tumor tissue tested because he didn't feel that tumor tissue testing is a viable way to determine what drugs may and may not work for a patient, but whether it is just coincedental or not, it certainly seemed to be accurate in Brittany's case.
With special caring thoughts and continued Hope,
Bonni

[Jorge]

Thanks Bonnie.

So looks like also very useful to do the c-MET immunohistochemical expression. If we also get an expression on this, it can broaden the TKIs options.

Regarding the tumor tissue test, it's observed in a lung cancer community here that the immunohistochemical expression makes more sense in determining TKI than the gene mutation test result. But it's a anecdotical summary. The doctor here indicates the tumor tissue tests can just be used for a reference only, can't determind the drugs on them.

Thanks again,
Lynette

[D.ap]

Lynette and Jorge
Just curious how you two are doing?
How is Jorge feeling after his procedure ?
What TKI are you currently on for the brain mets ?

Hope all is well for you both
Debbie

[Jorge]

Thank you for asking. George is doing very good currently since he is off the TKI now for the laser surgery in next week.

He doesn't feel any uncomfortable at all--the doctors also told us he may not feel anything at all. I think if the brain mets are found in a very small size with asymptomatic,
the side effect of Gama knife is very slight. So it's really important to have the brain MRI at a relative frequent intervals and find the possible met when it's at a very small size.

Thank god, George had a brain MRI last Thursday and no new mets found. He also had a chest CT scan in the weekend. Most of the mets are 1~2mm smaller compared to 1 month ago--we realize the CT is too frequent, but it's for evaluating the TKIs. But it's still hard to tell because he had half month Sutent + half month Pazopanib. Bad planning
Anyway, it's overall good news.

However, we're wondering what we should do after the thoracotomy. I don't know if we should continue to take Pazopanib. Although the lung and other place is clear, there is sitll chance to have any new brain mets, right?

Please let me know if anyone has any input. It will be highly appreciated!

Debbie,
How is the recovery of Josh from the surgery? Is he coming home soon?

Thanks and best regards,
Lynette

[Ivan]

George and Lynette,

I have to say you are doing a great job managing George's disease. You are doing almost everything right, and giving him the best chance to survive. If all ASPS patients were as pro-active as you, many more would be alive today.

I honestly don't think if anyone can give any conclusive advice to you regarding the TKI. Does George have any side effects from pazopanib? Yes, 1 month of TKI with ASPS obviously can't be used to judge whether they are effective or not. If it grows by 1mm per month, and the TKI slows it down 40%, you still can't tell anything has grown.

I think the consensus is that TKI get less effective (even if initially effective). I personally have no plans to use them until the situation becomes not controllable via other means.

[D.ap]

Lynette

So good to hear that George is recovering so quickly!
In answer to what we think about TKI's and that is, we are researching like mad to be as knowledgeable about them much as possible so IF the time comes we will have them to utilize at that moment.

My thought is if we've had both lungs successfully cleared of any visible tumors
then as a preventative measure to keep more from appearing, maybe, JUST maybe the TKI's
can do that for us But the thought in my mind is what if the TKI's reduce more of the quality of our current life than they GIVE to our future life. In other words they shorten our life rather than prolong our life . What if the tumors don't return aggressively and we've created more of a problem than we have solved. So with that being said, I would prefer to do the scans and use surgery and use TKI's as a last resort to take care of the little devils, the mets.

Ivan has been able for over 10 years to manage his disease with surgeries. Unfortunately the health care system does not make that option available all the time with this disease. A lot of medical professionals want to just treat with drugs and they don't see any supporting journals that say surgical intervention is a way to possibly prolong the life for the patient or maybe make it a chronic disease NOT a terminal disease. So the patient is left with drug treatment .

You see it's not my choice to make. I believe that Josh is with me up to a point
Josh is home safe and sound and doing well with 72 less mets in his right lung!
Thanks for asking

You both have a safe trip to Germany and we look forward to hearing the good news when you are able.

[D.ap]

Ps
I agree with Ivan that you both have done a wonderful job managing this disease .
Love
Debbie

[Jorge]

Jorge, they use CT scan during the procedure - not MRI, correct? I guess from now on with 1mm slice MRI it will be easier to get the nodules diagnosed in a timely manner.

How are you tolerating the gamma knife procedure? Are you experiencing any neurological side-effects during your recovery?

Ivan,
To give a clarification on the solution of brain MRI.
It turns out that it's an unreasonable request to ask for a resolution of 1mm for brain MRI. The MRI radiologist explained that the MRI scan is done in 3 dimensions, if the resolution is accurate to 1mm, it will take too much time--a scan with 8mm solution takes about 18 minutes. He also indicated a scan like this can capture any mets. Anyway, he wouldn't do the scan with a resolution smaller than 8mm
But I remember the MRI to locate the mets for Gamma Knife, was done in ~3.5mm and it took less time (maybe 10 minutes), so I guess the scan was only done in one dimension.

I don't know which is best. You can discuss with your doctor next time when you will do the MRI.

[Ivan]

8mm is not acceptable. My brain MRI takes 30-40 minutes or so, and I think the resolution is 2.5 mm.

[D.ap]

Lynette and George

How are you both doing?
Have you made it to Germany yet?
I hope this finds you both well
Love
Debbie

[Jorge]

Hello, everyone.
I'm updating from Germany.
George had 22 mets removed from the left lung on Sept 18th. Dr. Rolle said there was a big lymph node met close to a big vessel (I'm not sure if it's the pulmonary artery) and he might need to remove the lower lobe. Fortunately, Dr. Rolle was able to remove the lymph node completely without resecting the lobe
We're very happy and feel blessed.

We will go home tomorrow! We're both homesick now being out for such a long time.

Thank you to everyone who has helped us and thanks to the community. Wish you all the best.

[D.ap]

Lynette and George
So good to hear the wonderful news !
Safe travels to you both
Much love
Debbie

[D.ap]

Lynette
In response to your question about night sweats--
"Hi Debbie,
George has much night sweats from maybe August (it was mainly on the head) when he was taking the TIKs, and now after the surgery.
Is it because the body is too tired? How did Josh do to recover from this?

Thanks,
Lynette"

Flannel sheets are absorbent and cooling
Also some vitamins help cut down on perspiration
If you guys are taking TKIs you might want to talk to your oncologist before taking vitamins
Lavender oil is very calming and relaxing to the body and mind
As I understand it sweating is a persons body, metabolism reacting to stress. Maybe the cancer and maybe the pazopanib.
Hope George is feeling better!
Hope you are home safe

Love
Debbie

[Olga]

Some possible reason for the night sweets might be Pazopanib, Connie reported awhile ago that Kevin had them too:
"Kevin's side effects on Pazo have been minimal at 6 weeks in--night sweats, twitchy hands, occasional fatigue and nausea, and the hair turning white. "
its here:
http://www.cureasps.org/forum/viewtopic ... &start=120