Avastin/Cpt-11

Hello,

My husband was diagnosed with GBM last August '07.  He had six weeks of radiation with Temodar and finished at the end of October; however, that treatment was not successful.  After the MRI results, they started him on Avastin/CPT-11 the next day.  And so far it' working.

It's good to see so many encouraging messages - but I have a question - my husband has short term memory loss, he's confused, and he has poor balance at times.  I haven't seen those symptoms mentioned here - anyone experienced this?

 

I was dxd shortly after your husband. I've had 7 rounds of Avastin/CPT11 and don't suffer any short term memory loss, but I am having a lot of trouble with legs and feet and my gait is usually shaky; somedays worse than others. I've had a certain amount of gait problems since I got this blasted thing, though, so I'm not sure if it's from the treatment or the hideous cancer. Onc says leg problems are from my 42 days of temodar/rads, but that ended in November!  Where your husband's tumor was/is located could have to do with his short term memory loss and confusion. Or maybe other meds he might be taking? I wish you both well and hope the symptoms stay manageable.

Radiation is notorious for causing short term memory loss and then later long term memory loss.  I am surprised your docs did not discuss this with you ahead of time.  The location of the tumor and the age of the patient also have an impact as well as the type of radiation.  Whole brain radiation may cause more memory issues than the newer IMRT radiation (At least that is the hope.  It hasn't been 'round long enough to be proven in my mind.)  My husband is 46 and is experiencing both types of memory loss, but not to extreme degrees.  I think some of it may also be temporary due to brain trauma & swelling.  At least I hope so.  There is also something called chemo brain.  Even patients that do not have brain cancer can experience mental fogginess due to the chemo treatments.

jackiekay

As for the balance, same answer.  Add to that, he is probably weaker than he was before treatment.  My husband's balance has been severely compromised because his tumor is next to the motor strip.  He was sitting down putting on his shoes at the top of the steps a week after surgery.  He tipped right over and went head first down the steps.  Scared the living tar out of both of us at the time, but he was fine.  We both lived to joke about it later (but just talking about it still gives me knots in my stomach).  New rule was no more putting on of shoes or coats on the landing.  Unfortunately, with the memory problems remembering that rule is difficult.  Brain CA gets you coming or going it seems.  I hope this helps.

Jackiekay

Hello jackiekay,

Thank you.

The doctors did say there might be short term memory loss, but I didn't think it would be this severe... I really don't know what I thought.  My husband is 72, has always been active and was in good shape, still worked and traveled often and far in his job.

He has two GBM tumors.  The one (6 cm.) on his occipital lobe was removed (at about 90%) last August and the tumor on his temporal lobe (3 cm.) could hopefully be treated with the 6 wks. of radiation + Temodar.  We checked in to being treated with Gamma Knife or Proton Beam but were told my husband was not a candidate, because for radiotherapy the tumor needed to be smaller than 5 cm.  In addition, the MRI showed a thread between the two tumors.  So reluctantly we agreed to the brain radiation using IMRT.  I'm asking myself if we should have insisted on radiotherapy.  We also talked with a doctor at Stanford about the CyberKnife and maybe we should have pursued that further.  I'm sure I'm not alone in asking myself if we chose the right treatments.

Physically he has tolerated the radiation then the Avastin/CPT-11 treatments well so far - some days are better than others - but he has lost a lot of muscle, is so much weaker and unsteady and very tired.  There is a certain confused look in his eyes - an empty stare that I've never seen before.

Through it all I'm thankful he is still with us and hope he'll get stronger.

My very best to your husband.

Harvsfru

Hi,

 My mother (GBM IV diagnosed Dec 06) sufferred short term memory loss from radiotherapy. I think the principle that governs the treatment is that any memory/mental defects that result from it will develop over the medium to long term, by which time most patients will have died from the tumour.

My understanding is the greater the volume treated, the greater the risk of mental defects following treatment. My mother had a fairly broad area treated hence the problems she's had.

Since then she has been debulked for a 2nd time, had gliadel wafers inserted, started temodar and finally been operated on to drain fluid from a cyst that had formed near the operation site.

I'm sad to say she has sufferred further mental deterioration as a result of this treatment - battle damage they call it. She now barely recognises her family and resembles an advanced alzheimers victim.

Its important to weigh up all the factors before making a decision on treatment for GBM, as battle damage like this is not uncommon.

 Ironically the tumour itself is stable at present and has grown very little since the 2nd debulk late last year ! 

 

 

 

 

I've noticed this in my spouse, too.  Avastin has no doubt been a blockbuster treatment for many types of cancer.  There are still some downsides and other considerations.  One of those considerations is that although Avastin shows marked response in enhancing tumor it isn't exactly clear what it does with non-enhancing infiltrating tumor.

Attention everyone on Avastin - please tell me how you are getting this drug for GBM. My Dad has a GBM IV (dx 7/07) and is on Temador only. We have heard wonderful things about Avastin but it seems that it's difficult to get it covered under Medicare and is very very expensive. There was a clinical trial that Medicare would have covered, but it is now closed to new patients.

He is limited in his ability and desire to travel, so treatment far from Boca Raton, Florida is not an option. Does anyone have any recommendations?

 Thanks in advance,

Susan

 

 

On 4/10/2008 mbg53 wrote:

I was dxd shortly after your husband. I've had 7 rounds of Avastin/CPT11 and don't suffer any short term memory loss, but I am having a lot of trouble with legs and feet and my gait is usually shaky; somedays worse than others. I've had a certain amount of gait problems since I got this blasted thing, though, so I'm not sure if it's from the treatment or the hideous cancer. Onc says leg problems are from my 42 days of temodar/rads, but that ended in November!  Where your husband's tumor was/is located could have to do with his short term memory loss and confusion. Or maybe other meds he might be taking? I wish you both well and hope the symptoms stay manageable.

My dad, dxd 7/07, also is having trouble with his gait, legs and feet. His treatment consisted of a gross resection, 6 weeks of radiation and Temador, followed by Temador on a 5/28 day cycle. He's also on Decadron and Lamictal (transitioned from Topomax).

He's lost a lot of weight and his legs are very thin. He began walking kind of funny a few months ago - his gait would become very irregular for a while and then go back to normal (normal is relative - post surgery normal means very slow but with a regular rhythm). Lately, he has lost a lot of muscle tone and has trouble balancing (he has fallen 3 times in the last 2 weeks, and is now, reluctantly, in a wheelchair).

I hope that info helps. I wish you lots of luck in sorting through this terrible disease!

 

If you go to Duke, in NC, you can get Avastin on Mediare.  For some reason some states pay while others don't.  Avastin with Irinotecan is listed in the National Cancer Comprehensive Guideline as front line treatment for glioblastoma.  Medicare is "urged" to follow the guideline.  That's our government.  Medicare is a national system, too bad the states have freedom to pass or deny treatment.  Duke is a long way to from Boca, but they can keep your loved one alive. Good luck!