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Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

My husband was diagnosed with a GBM 2 months ago. It was diagnosed a few days after he had problems with speech/aphasia, problems with writing, and performing calculations. He had none of the "typical" symptoms of a brain tumor (no headaches, dizziness or seizures). We thought that he had a stroke and were in shock when the MRI showed a 2-inch tumor! It was in his left (dominant) parietal lobe. It was easily resected, because it was close to the cranium, and we were told that it "popped out" like a golf ball (no "tentacle-like" parts). He's now on radiation/Temodar. He seems to be doing great, so far! His prior symptoms have basically disappeared, although he still can't "multi-task" (which he had been so good at before... Ironically, he's a physician) and his short-term memory has been impaired. He has been extremely fortunate to have friends in the field of oncology who are checking out every nook-and-cranny for every possible cutting-edge therapy (immune, chemo, vaccine, maybe a "designer" therapy that would attack the weakest link in his particular tumor on a microbiological level???) They are also looking into Avastin. Has anyone had any experience with Avastin, or any other newer treatments? Thanks!

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

Hello,

my relative has the same type of tumor in the same location. The tumor was completely removed, but there is always a small piece left behind.

He completed the 6 weeks of radiation and temodar, and the tumor has shrunk, but still some left. Not sure if the Dr were hoping to have the whole tumor gone, or if this is normal?

He will do a Cyber knife radiation treatment next.
Also starting 6 months of chemo , one week on, 3 weeks off.

I am curious to compare how your husband is doing, after radiation, did the tumor shrink, etc.

Is this a primary tumor or related to another cancer? For my relative it is a primary tumor.

BC

Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

Hi. When my husband went through his surgery almost 3 months ago, they were able to remove the entire tumor (It is a Primary one). He went through about 7 weeks of radiation and Temodar. He completed that about 2 weeks ago. He went in for a repeat MRI last week, and it showed an "unclear" area about 1/6 the size of the area where the first tumor was removed, right next to the original area. However, they can't tell if it's new tumor or dead cell debris. He since has had more definitive (supposedly) scans , and we are waiting for the written reports on those. The doctors who he currently sees (a neuro-oncologist and the brain surgeon) disagree on the next first line of treatment... He took 5 days of Temodar (a higher dose this time) and is off it for the rest of the month. The neuro-oncologist says to wait out the month and have a repeat MRI. The surgeon, although admitting that waiting a few more weeks for this next MRI would be O.K., too, says that he is most positively sure that it is new tumor, and it needs to come out! When my husband had his first surgery, it was a nightmare! He was in the hospital for a month! That was because, after healing from the surgery, he went to a rehab. floor (meanwhile on the massive doses of steroids that he was on, which made him completely manic, sleeping 1-2 hours a night; nonstop talking, etc.). Then (since brain tumor patients, for some reason are more prone to blood clotting, and he couldn't be placed on blood thinners after the operation), he developed blood clots in his arms and legs. He ultimately ended up with multiple clots in his lungs and a pulmonary infarction! They had to place him on I.V. Heparin and hope that he didn't have a brain bleed, which he didn't. But the whole experience was a complete nightmare for him, so the thought of having surgery again, when they aren't even 100% sure that it is tumor, is horrifying! However, if it is recurrent tumor (and you know that this is a fast-growing tumor!), he risks it spreading throughout his brain! Sooo... For now, we wait for the next MRI to see if that area has grown or if there's any new information. Then a decision will be made. Another option that the surgeon offered was what you mentioned: the radiation Gamma Knife. However, he told us that once that procedure is used, it is ultimately very difficult to read subsequent MRI's and be able to know what is and isn't tumor! He also said that he could take Avastin... or try one of the experimental vaccine protocols. So, right now we are in a holding-pattern until the next MRI at the end of May...

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

Hello,

I spoke to my mom and got more information. Seems after the surgery there was a small shadow nearby that wasn't able to be removed. that is the tumor that has grown a little and they will use Cyber knife radiation next. I think the initial radiation was focused on the area nearest the surgery. This tumor is about 2 inches away.

I would ask about Cyber Knife? Didn't know that after the Gamma knife, it could be hard to see the area, must be scar tissue? Cyber knife came out this past Jan, so I know it's pretty new.

Also, my dad did 6 weeks of IMRT radiation. I think the initial area that was treated looks ok for now.

The dr also mentioned that after they are able to clean up this area and after the 6 months of chemo, they might continue in a maintanance mode, one week on every other month. Seems they don't really know when to stop chemo since it can come back and continueing with chemo in a much smaller dose can be effective. He has some patients that have been doing ok for the last 3-4 years.

That area you mentioned about your husbands tumor could have been there before/after the surgery, since the dr can never remove 100% of the tumor, but can get 95 to 98%. There is something always left behind, well, that is how it was explained to us.

What interest me when reading your message is how familiar this is to my dad's. The information sharing could be very beneficial to all.

thanks

Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

My husband had the IMRT radiation, too. I think that my husband's tumor was unusual, because it was completely encapsulated (and no "tenticle-type" growths from it). They said that they were able to remove the whole thing, because they had caught it much earlier than they usually do, and this tumor popped out like a golfball. (That's their words.) What kind of chemo. is your dad on? If my husband is to remain on the Temodar, they would keep him on the 5-days-on, followed by 23-days-off, for up to 2 years! They did a tissue exam on his tumor, which, they said, showed that he was a "Temodar responder"; But if this is a tumor recurrence, then I guess that it would mean that the Temodar is not working. I know of 2 cases where people with GBM have lived 15 or more years, and they're still around! So, some people are very lucky! (A very few, though...) This is a horrible illness, no matter how you look at it!

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

I believe my dad's tumor was like a golf ball and 2 cm, and no tenticle's.
But still the surgeon said that they got all of it and I guess there is some that is embedded but perhaps normal in surgeon terms. Hard to really now, since I go on what my mom says.

His tumor was on the surface of the brain which made it easy to remove. He was in the hospital 2 days and out. Quite amazing. I am sure your husband would have been in and out quickly if he didn't have those struggles. The Cyber knife is a replacement to surgery and can pinpoint to areas that are inoperable as well as those that are. I should know more in the coming weeks as to when he has this. They may want him to do a few more cycles of chemo before this radiation treatment.

my dad is taking temodar as well, one week on and 3 weeks off and sounds like you could take this for several years. I say if it keeps the tumor dormant, than it is so worth it.

The stage of my father's tumor was very early stage 4 , basically right on the border between stage 3 and 4.

I will keep you updated on what they do, results, etc.
I hope you ask a lot of questions and I would ask about the Cyber Knife as an alternative to surgery, especially after what your husband went through the first time.

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

Hello,

I wanted to provide an update. My dad will be having the cyber knife treatment in the coming weeks. Turns out this area of growth is a re-occurrence, so hopefully the cyberknife can treat this.

I am most interested in what informatin you find out from her husband's colleagues and how your husband is doing. Have they may any decisions on what course of treatment to do ?

thanks for any info you find out.

Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

My husband has his one-month follow-up MRI this coming Tuesday. We are holding our breaths until the results come back that day. If there is no further growth, or the suspicious area has shrunk, then he will continue taking the Temodar cycle of 5-days-on, followed by 23-days-off. If his doctors agree that the area has increased in size and that he should have further surgery, then he will probably have the surgery. After that, he will probably consider one of the newer experimental protocols somewhere (possibly one having to do with Avastin, added to another experimental chemical). I'll know more next week...

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

thanks for the update. I will hope for the best for you and your husband.

I guess the Gamma Knife is not an option? Could the suspicious area be too big for gamma knife?

I think it will take about a month or so, before we have any updates on the cyberknife treatment and how it does, but I will update you.
If their doctor recommends other treatments, I will pass them on to you, info sharing is important.

If you try something experimental with positive results, please let me know, as you never know what treatment can be effective and be worth trying.

thanks again, and I will hope for the best for you.

Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

One of the several possible treatments that my husband had been told about last month had been something a little newer than traditional Gamma Knife (although I can't remember the name of it). The doctor who mentioned it said that the problem with it was that once you had the procedure done, from that time on it would be very difficult to read any subsequent MRI's... We find that, depending on who you talk to, you get a different recommendation! It gets very confusing! The surgeon wanted to do immediate surgery last month, whereas the other doctors all said to wait another month until the next scan.

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

Hello,

First, how is your husband doing and did he have surgery, or are you waiting for the next scan?

My dad is doing the Cyberknife treatment now, each is 30 minutes long and has had no side effects.
I don't think we will know the results for another 6-8 weeks. So hopefully this will stop the growth of this tumor for now.

His reading is ok, not great as that is the sympton he had when he was first diagnosed. But I think he is able to read magazines and some light reading. Does your husband have problems reading/language skills and do you notice any changes in his reading.

My father had more trouble right before we started the cyberknife treatments where he could read at all, but now it has improved.

Hope all is well with you and your husband

bev

Mollypug · Regular Joined: 17 Feb 2006 Posts: 12

Hi! It was nice to hear from you! I'm glad to hear that your dad is doing well! My husband had his 2nd scan a couple weeks ago (The next one is due June 26th.) There was a small suspicious area on the first one, and on the 2nd one, there was a little more swelling (although the radiologist read it out as "no significant change".) The neuro-oncologist thought that my husband should add a second agent to the Temodar. So he started Avastin via I.V. 2 weeks ago. (It's considered "experimental" for brain cancer, although it's been used very successfully with colon, lung and breast cancers.) He'll be taking that just once every 2 weeks, and it only takes 30 minutes. There are no real side effects, either, which is a relief, as he continues to take the Temodar once a month for 5 days, and that does nauseate him. The surgeon thought that he still should have surgery... But everyone else said that he shouldn't. As for his symptoms, they have basically gone (He's recovered all of the skills that he had lost...Except that he still has difficulty trying to do more than one thing at a time/multi-tasking. We continue to live from scan-to-scan, though, but we try not to dwell on his illness inbetween... My mother was just diagnosed this last week with 2 probable brain tumors!!! So, it has been a rough week! We were at the oncologist with her this morning, and they want her to see a neurosurgeon now! (She's 81, though, so the issues will be different with her. She also has severe multiple sclerosis, going on about 40 years now.) So that's where we are at for now! How long will your father be receiving the Gamma Knife procedures? Please let me know how he continues to do! I hope that you are hanging in there, because I know how difficult it is!!!

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

Hello,

Glad to hear your husband is doing ok.

Alot of my fathers symptons are with reading and language skills, due to the swelling and once he started taking the steroids that improved.

His cyberknife treatment is going well, 30 min each day, so I think the usual treatment is 50 to 60 min, so perhaps his treatment is somewhat minimal. The hardest part is the waiting for 6-8 weeks to see the results.
He continues with the Temador as well, so maybe with both he will have a better MRI.

It is so hard to figure, especially with each doctor saying something else, like you should this, do that, etc. Funny that one doctor says do the surgery and the other says not yet. I think as long as they can control the growth and hopefully over time, shrink or stop the growth, than that will be good.

I would pay attention to your husbands symptons, as the swelling could cause some of his problems.

How long after you start with the Avastin will you see if this works or not? Glad to hear the side effects are minimal.

I cannot believe to hear about your mom. Wow... and that is hard for her being her age. But I bet she will amaze you, if she has surgery, I bet she does really well, although you might want to ask about the Gamma knife over surgery, since this tool can replace surgery and be easier for your mom.

I want to give you my home email, as maybe one of these times, we can actually talk and I would rather pass that info through my email acct.

my dad is 70, I think I mentioned that. How old is your husband?

I will be very interested to hear if Avastin works well for your husband, as it could be an option for my dad. When I talk to my mom I will ask her to tell me what treatment options their doctor offers, as the knowlege sharing could be beneficial to all

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

my email is bsharris@optonline.net

Nico · New User Joined: 26 Jun 2006 Posts: 1 Location: Australia

Hi,

I am sorry to hear of all your trouble with brain tumours.

From a search on the internet, my wife noted that your husband had had an Avastin infusion recently and that he is also being treated with Temodal/Temodar. You also mention that his next scan is due soon.

I am also a GBM patient, having been diagnosed on 22 July 2005, after which the original tumour was removed, concurrent radiotherapy was given for six weeks, followed by further treatment, after a month of respite, with Temodal/Temodar until Ferbruary this year. Thereafter, my treatment was changed several times, the latest being Avastin combined with Temodal/Temodar and procarbazine.

I would be very interested to hear from you as soon as the new MRI scan has been done, and what difference the Avastin has made.

Nico

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