Unsure Of Treatment

Hi to everyone,

My husband had surgery on March 10 at Duke, removed over 90% of tumor and he is doing well.  We are getting ready to start radiation and chemo (temodar) next week.  It should of started sooner, but the initial diagnosis was grade II, then changed to AA III, so we are a little behind.  We have listened to Duke, the radiologist and oncologist here in Louisville and we hear the same thing every time.  The standard of care is radiation and temodar.  Today I found Dr. Arenson's web site in Colorado and see how aggressively he treats grade III and IV tumors, much different than the others.  My question is, should we contact Denver, hold off treatment and go see Dr. Arenson? Should we proceed with the standard of care?  I know there are so many variables with this disease, but being aggressive seems the logical thing to me.  I am wondering if I call Duke and talk to them, if they would be willing to listen and try a more aggressive approach?  Their statement to us before was, we try more things when the tumor recurs.  Who wants to wait for that?  Lots of questions; can anyone help with some answers..or at least some thoughts.  Been there?  Done that?  

Blessings to you all,

 Debralynn

Hi Debralynn.

It seems that most medical professionals recommend the radiation and Temodar as the first line of treatment.  I believe that is because it does work for some patients and it is more easily tolerated by the patient.  No need to go on the really aggressive, heavy duty stuff if the Temodar works well. 

Radiation and Temodar did nothing for my husband and in fact, the post radiation MRI showed tumor progression.  They abandoned the plan to put him on the higher dose Temodar and switched to Avastin / CPT-11.  So far, so good.  We're at 1 year and 17 days after diagnosis.

I haven't read Dr. Arenson's website but I'll bet Lorre G can tell you why he chooses to use a more aggressive treatment and she should also be able to tell us all if it seems to work better than the less heavy duty approach.

Best wishes,

Barb

Radiation and temodar is aggressive. The rads are very powerful stuff--can double your life expectancy with 30 days non invasive treatment. Those 30 days aren't easy, for sure, particularly toward end of it, but I thought well worth it. Avastin combo is usually saved for recurrence. Honestly because there are only so many things that have any affect on this horrible cancer. Signature of aggressive treatment seems to be not relying on any one drug or combination of drugs for too long, giving the cancer time to grow immune to it.

You have to make your own decisions, of course, just one person's opinion. Good luck whatever you choose. Keep fighting to good fight!

It all comes down to what your comfortable with, but here are a few things to consider:

Duke has one of the top brain tumor centers in the world. 

If you look at Dr Arenson's approach to "cure" at

http://www.edwardbarensonmd.com/brain-tumor-treatment-cure.h

you will see that their mode of treatment is radiation with concurrant chemotherapy, chemotheray and biotherapeutics.  This is nothing new.  Any major brain tumor center - like Duke - offers this.  In fact, Duke offers a variety of options including the standard of care approach, clinical trials and off-label treatments.  Two of the treatment approaches we've employed in the last 3 years have been off-label and Duke has helped get them approved with my insurance. 

I have bias to be sure, but I don't believe you can do better than Duke.  Again though, and I stress this; you need to be comfotable with your choice.

My husband and I are leaving Ohio for Denver on May 5 to meet with Dr. Arenson.  This will be our first visit.  We will then return home, and he will begin treatment (again) with a consulting medical oncologist at a local office.  We are close to a major brain tumor center--The Cleveland Clinic--but chose not to go there due to past experiences.  Our choice has been to stay away from the major centers as much as possible for several reasons.  We feel like we get more personal service and avoid the extensive waits in offices (hopefully).  Also, major centers often want to steer you towards clinical trials and have hospital protocols they have to follow that may not necessarily be best suited for everyone.  I don't want to appear that I am bashing any of the major centers.  I have a lot of respect for medical professionals, but I also know how my husband operates.  Sitting for hours in gigantic hospital waiting rooms won't happen.  That doesn't mean that in the future we won't have to change our game plan again and perhaps go to The Cleveland Clinic or some other major medical center.  I just feel this is the best choice for us right now. 

Dealing with Dr. Arenson's office and setting up an appointment has been extremely easy.  Everyone I have talked to on the phone including Dr. Arenson himself have been more than accomodating.  Initially, I sent my husband's records to the doctor in January.  He called me himself and recommended we do several things before we consider traveling to Denver.  This has all worked out very well and now we are ready to make the trip.

This is a very confusing and overwhelming disease.  The route I have taken is to do as much research as I can and then use that info to make a gut decision.  I think if wrote a brief medical history and copied the CD's of the MRI's then you could "overnight" the info to the doctor and at least get some more input.  Perhaps at that point you will decide to stay with your current treatment plan or maybe you'll decide to change.

Dr. Arenson is a good doctor who doesn't necessarily only follow standard of care.  He feels that the tumor will cause you more harm than the aggressive treatment that he espouses.  Each patient is treated individually and their treatment plan is designed specifically to meet the needs of that patient.  "Standard" is anything but what we do here.  He is in private practice and is affiliated with the Colorado Neuroligcal Institute Center for Brain & Spinal Tumors.  Not being under the "university" setting, he can do more aggressive treatments and his hands aren't tied by government grants etc. 

I think he's a good doctor, but I  am biased. I have seen the results of his work up close and personal for 9 years.  He gives the personal attention that so many patients crave.  He cares about his patients and their families.  They are not numbers and statistics to him, but real people with real dieases that he hopes can be treated and hopefully cured.  Oncologists are always reluctant to use the word cure with this disease, but when you have GBM patinets who are surviving 11 years and up, then cure is something you can say woth these patients. 

It never hurts to get a second opinion.  We always encourage our patients to do so if they aren't sure of what they are hearing from their current doctor.  You have to feel comfortable and confident in the physician who has your very life in his/her hands. 

You must do what you think is right for you, but if you need us here in Colorado, we are here for you.

Lorre G.