UPDATE

5 Posts | Page(s): 1 

Update

by rosegamel on Wed Dec 05, 2012 06:13 AM

Quote | Reply

Let me apologize in advance for all those privately emailing me for an update...things have just been so chaotic lately between work, kids, and traveling all over the country. So here goes...

We have 3 new tumors. 2 on the motor strip that are responding to avastin and one extending into his occipital lobe that is not responding at all toavastin.Wehave been evaluated by several people at different facilities for surgery, gamma knife, radiotherapy, autolitt/neuroblate and got turned down by all. Apparently the growing tumor is too diffuse /multi-focal. Cleveland clinic was also a big flop for us.

Because he has failed Avastin after only 8 weeks, it has eliminated him from many different trials. There are 2 in particular that we are waiting on. The temodar/parp inhibitor with avastin should be re-opening soon. It was shut down for a toxicity event that was not related to the therapy so it should be opening back up. The other trial consists of avastin/cd105. The avastin is helping two of the tumors so we want to keep using it. The cd105 may help the growing tumor if it is related to egfr expression. We havent made a decision yet and wont be able to until we see the neurosurgeon on thursday.

So, heres the good news (maybe). After getting back from Cleveland clinic, my husband's original neurosurgeon called and said he would consider surgery for the growing tumor. We will know for sure on Thursday, so, in the meantime, we have stopped Avastin. He needs 6 weeks off before the surgery can be done.

Currently, my husband has remained pretty stable except for some episodic visual stuff (flashes or stripes of light, blurriness) in his left eye. It is becoming more frequent so Im sure it is directly related to the new tumor. We are not on decadron but there doesn't seem to be too much mass affect at present and he wants to stay away from it as long as possible.

Thats it for now...Im putting it all in God's hands.

RE: UPDATE

by angel1959 on Wed Dec 05, 2012 09:59 AM

Quote | Reply

On Dec 05, 2012 6:13 AM rosegamel wrote:

Let me apologize in advance for all those privately emailing me for an update...things have just been so chaotic lately between work, kids, and traveling all over the country. So here goes...

We have 3 new tumors. 2 on the motor strip that are responding to avastin and one extending into his occipital lobe that is not responding at all to avastin.We "" target="_blank" rel="nofollow">http://avastin.We " target="_blank" rel="nofollow">avastin.We have been evaluated by several people at different facilities for surgery, gamma knife, radiotherapy, autolitt/neuroblate and got turned down by all. Apparently the growing tumor is too diffuse /multi-focal. Cleveland clinic was also a big flop for us.

Because he has failed Avastin after only 8 weeks, it has eliminated him from many different trials. There are 2 in particular that we are waiting on. The temodar/parp inhibitor with avastin should be re-opening soon. It was shut down for a toxicity event that was not related to the therapy so it should be opening back up. The other trial consists of avastin/cd105. The avastin is helping two of the tumors so we want to keep using it. The cd105 may help the growing tumor if it is related to egfr expression. We havent made a decision yet and wont be able to until we see the neurosurgeon on thursday.

So, heres the good news (maybe). After getting back from Cleveland clinic, my husband's original neurosurgeon called and said he would consider surgery for the growing tumor. We will know for sure on Thursday, so, in the meantime, we have stopped Avastin. He needs 6 weeks off before the surgery can be done.

Currently, my husband has remained pretty stable except for some episodic visual stuff (flashes or stripes of light, blurriness) in his left eye. It is becoming more frequent so Im sure it is directly related to the new tumor. We are not on decadron but there doesn't seem to be too much mass affect at present and he wants to stay away from it as long as possible.

Thats it for now...Im putting it all in God's hands.

good choice he is in control and knows what is best live and love him like crazy and spend as much time as you can with him it sounds like you are thking very good care of him and i commend you for that . I lost mine on Oct the 30 and i had no regret we spent 31 years together and i put him before me gave him the best care that i could it is hard for me this christmas without him but he is in no more pain my heart aches for him everyday but god will carry me through best of luck to you 

RE: UPDATE

by siblingof on Wed Dec 05, 2012 02:58 PM

Quote | Reply
Rose, if the PARP inhibitor study is for ABT-888, we were on it before it was shut down. Disaster. The worst growth my sister's ever had was on ABT-888. I strongly advise against it.

RE: Update

by karynk on Thu Dec 06, 2012 12:37 PM

Quote | Reply

Thanks for the update Rose - Hang in there!  This part of the battle sure is the toughest!

-Karyn

5 Posts | Page(s): 1 
Subscribe to this message board discussion

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.