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Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

My husband had his monthly MRI today. He began the Avastin treatments a month ago (has had 2 treatments now, one every 2 weeks). This MRI showed quite an improvement! It showed marked decreased swelling! This was the biggest improvement that we've seen since the surgery! We tend to believe, due to the timing, that these good results are due more to the Avastin than to the Temodar. He will continue the Temodar treatments (5 days every month, restarting tomorrow night). He's been told that he really can't remain on the Temodar over 2 years, since it will begin to affect his bone marrow. However, I guess he can remain on the Avastin indefinitely... But they say that they still don't know enough about the effects of Avastin on brain tumors. Please keep in touch, and I will, too! What is the 3rd drug that they added to your regimen? Have you heard of CPT-11??? It is also an experimental drug for GBT that looks promising but has horrible side effects. Are you being treated at a major medical center? (I was curious how wide-spread Avastin is being offered.) My best to you, and I look forward to hearing from you again, Melissa

bc · Experienced user Joined: 11 May 2006 Posts: 54

Hello,

nice to hear about your husband and the avastin treatments. Is this an IV and is it taken one day every two weeks? How is it administered?

what side effects does your husband have from the avastin?

My father had the cyberknife and is doing ok. the swelling is gone, but he is still taking steroids - being decreased now, so the big test will be in the coming months, how he is and if any symptons show up.

Not sure when his next MRI will be, it could be several months before they can see exactly how this treatment worked for him.

He continues with the Temador for now.

Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

My husband is receiving the Avastin in one infusion every 2 weeks. The first infusion ran an hour; the 2nd infusion 2 weeks later ran for 45 minutes. Now the infusions only take 30 minutes. There are virtually no side effects! He has no symptoms from it at all! However... Avastin can cause blood clots (and blood clots are common in people with brain tumors. My husband had a terrible time with these after his surgery, so he is currently on Lovenox, which he injects himself twice a day). Ironically, the Avastin can also cause brain bleeds... not from injury, but if the Avastin should work on the tumor in such a way that the tumor, itself, breaks apart and starts bleeding! So, it's a double-edged sword. The reason that my husband is on Lovenox, as opposed to another blood-thinner, such as Coumadin, is because in case of such a bleed, the effects of the Lovenox can be reversed more quickly than with other blood-thinners. Avastin is currently approved by the FDA for colon cancer, and I believe that they are working on approving it for lung and breast cancer. It is still very experimental in brain cancers, so it isn't covered by insurance. However, I've heard that the company that makes Avastin sometimes supplies the drug to patients. You may have to find a large medical center that has a study currently going on using Avastin. (I think that the Avastin works by shutting off the blood supply to the tumor; There's a name for these kinds of agents, but I don't know what it is...) I hope that this helps! Take care...

bc · Experienced user Joined: 11 May 2006 Posts: 54

hello,

I wanted to see how your husband and mother are doing.

Hopefully they are doing well.

My father was doing well after the cyberknife treatment, and over the last few weeks they were decreasing his medication.

than this week he had a seizure. He had a CT scan which didn't show any bleeding or problems and just waiting to hear what caused the seizure. We are thinking it is due to the gradual decrease of the steroids and Anti-seizure medication.

Does anyone know more on this area? I believe he has some fluid in the treated area. Does this every go away??

thanks for the updates

Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

Thanks for asking about my family members! It turned out that on a second MRI, read by a better radiologist, the nodules in my mother's brain were caused by her multiple sclerosis and weren't tumors. (So, they've kept her on a very low dose of steroids for now.) As for the anti-seizural medication, my husband said that his neurologist said that it could go either way... After awhile he could be tapered off of it; Or, since he tolerates it O.K., there would be no reason to take him off of it, so for now, he remains on it (5 months post-op.) He goes in for his monthly MRI this Monday and restarts his 5-day regimen of the Temodar. After just 2 treatments over a month of the Avastin, the area around where the tumor had been (which had some kind of swelling/edema/fluid around it), the MRI showed great improvement! We'll know Monday whether or not he has continued to improve. I don't know where you live, but I would really really look into finding some place like a large university hospital or large hospital where they are using Avastin in experimental studies, if your father doesn't improve! (Of course, you'd want to be sure that he was actually RECEIVING Avastin and not getting a placebo of some kind!) Avastin has been shown to be a very promising drug, and it doesn't have the side effects (nausea, etc.) that the other chemos. have (although one is at more risk for blood clots, so he'd have to be on some kind of blood thinner.) And, contradictory to that, Avastin can act upon the tumor (so I'm told) to break it down TOO quickly and cause bleeding in the brain! So, it DOES have it's risks (like everything else). The other thing is that my husband has been told that IF it turns out that he needs surgery at some point, he has to be OFF the Avastin for 60 days first! So that's something else to consider. I'll let you know how this Monday goes... We'll have new information then, because if things have gotten worse, they could add a 3rd medication, also... My best wishes to your father! Keep in touch!

bc · Experienced user Joined: 11 May 2006 Posts: 54

Hello,

Just looking to see how your husband is doing and how his scan was.

My father is doing ok now, taking a higher level of steroids as he had a lot of fluid and swelling and that caused the seizure.
He had a slight tumor growth after the cyber knife, but the DR's said that is pretty normal and that the cyber knife works for up to a year...
Not that familiar with the cyber knife and if it's purpose is to slow the growth or halt it.

I have communicated to my folks the avastin and will be curious to see how it goes, so maybe down the road if need be, they can ask and see if t his will work for him. But I am hoping the Cyber knife continues to work as they say.

hope all is well with you

triley · New User Joined: 25 Jul 2006 Posts: 5

My brother-in-law was diagnosed 14 months ago with an inoperable GBM. He has done radiation and chemotherpy (Temador) and is currently at MD Andersen initiating Avastin treatment. Avastin is our last hope and it is getting really good results comparitively speaking. Some serious side effects, but really worth looking into. We had high hopes until today, they told us the tumor has grown aggressively in the last 3 months. The Avastin might give him some relief, but there is now too much growth to really reduce. Insurance will not cover his medical once he begins this experimental treatment, so be sure to research well. Talk to your doctors and others about this treatment early on.
Prayers to all.
Tracy

bc · Experienced user Joined: 11 May 2006 Posts: 54

Is he just starting the avastin treatment? You never know what this can do for your brother-in-law.

Did they try Gamma Knife or Cyber Knife radiation - this works on inoperable tumors and can slow the growth?

Please let me know how his avastin treatments go, I will hope that it stops the growth of his tumors... Dr's are human and you have no way of knowing what will really happen, until he does this and you see the results.

I wish you luck.

triley · New User Joined: 25 Jul 2006 Posts: 5

Dear BC,

The tumor originated to close to the brain stem to risk any type of surgery. So, no gamma knife treatment. He had his first treatment on Tuesday of Avastin. He is doing good so far. No side effects to speak of. They increased his steriods and his functions have improved since the weekend. He will have another treatment in two weeks. This isn't a cure - just more time. As you know, Avastin is experimental for GBMs - but showing better results than anything else they have for treatment to date. The research for brain tumors is slow but surely progressing. There is always hope. Thanks for your kind words.
Tracy

bc · Experienced user Joined: 11 May 2006 Posts: 54

Hello,

I thought I would check in and get some updates from you guys. Hoping all is doing as well as they can be.

my dad is doing ok, now. Pretty stable, although the tumor is there, hopefully it is slowed and controlled by the Cyber Knife. He can't read that well and has some memory issues, but other than that, he is doing well.

Thanks for the updates

bc · Experienced user Joined: 11 May 2006 Posts: 54

Melissa,

How is you husband doing? I was wondering if he is on avastin and how that has worked so far?

Thanks

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