two years and all is well!

Diagnosed end of October 2007.  Went for my scans yesterday - no change!  Yippee!  My history - surgery, radiation, temodar (couldn't tell if it didn't work or if it was scar tissue), changed to CPT-11, Avastin.  Have done those together since June 2008, beginning at two week intervals and stretching them out until five and now possibly six week intervals. 

My question to you all is, how many of you are on the combo and how many on just the avastin.  I'm considering talking to my doc about dropping the CPT-11.  When my treatments were much closer together, I often couldn't take the CPT-11 because of my blood levels.  Taking just the Avastin is such a breeze.  With the CPT-11, I'm down for about a week.  Nothing terrible by any means, just feeling yuck.  I'm on a reduced Avastin, so I, of course I'm not a doctor - nor do I play one on tv, (you have to be REALLY old to get that joke!) wonder about the benefit of just going on the Avastin.  I can always come back to both and have a higher strength of Avastin to go to and closer treatments, etc. . .  Does that make any sense.  Not sure since I just had treatment yesterday.  (Of course, I've never made sense -- even before we found something was wrong with my brain!) 

Donna

Must be something wrong with me too, Donna, because you make sense! LOL! Seriously lots of people are on Avastin only. I would be nervous quitting the chemo but maybe stretch it out more? Or decrease amount?

When you couldn't take it b/c of BLOOD LEVELS was it platelets? Or something else. What did you do to boost bone marrow function? Any ideas appreciated.

Love and courage and HOPE!
Sarah

mom of Andy 27 dx gbm/pnet 1/09

When my blood counts were low, it was the white blood cells needed to fight infection.  As far as what I did? Nothing.  I asked my oncologist, she said there is nothing you can do.  I asked my general practicioner - nothing.  I even asked the one who knows more than all (my oncologist nurse) and she also said nothing.  It's just something you have to wait on.  I did look around on the internet and found tons of things different people were working, but it's like everything else.  What works for one doesn't always work for the other, so I just let it go.  I went three months with just Avastin last month because of it, but since my treatments are so much further apart now, I don't have to deal with that anymore.

One lady did tell me she drank a bottle of ensure every day and since then she had not had any low blood count.  However, when I looked at the bottle, it contained LOADS of sugar and I try to stay away from that as much as I can (very HARD to do - whoever knew they added sugar to canned pinto beans?).  They do have a sugar-free, but I also try to stay away from fake sugar - except truvia.  It is SO hard to have a healthy eating lifestyle - sick or not!

Hope this helps and thanks for the love and encouragement.

Donna

Oops!  It was supposed to say 3 times last FALL instead of last month - that would be some heavy duty treatment!

Donna

Donna... when Andy's platelet count was low last week I thought hmmmm... he has had great counts until now... on mega Temodar doses... just one Carbo and he's way down? What else is different? I suspected the coffee he's been pounding, and sure enough found a couple of articles about the phenolic acid in both reg. and decaf coffee and its effect on bone marrow production and function. We're trying to drink more tea and yerba mate' now. Sugar: the ultimate gateway drug! SO hard to kick. Moderation might be the goal.

All the best,

Sarah

Donna;

Great - no change is good.  My husband, Rob, is doing biweekly avastin plus temador 5/23.  Don't know if this would be an alternative for you.  Rob's NO thought that the cpt11 upfront would negatively affect his quality of life and he thinks there is no proof that it works better than avastin and temador.  Hope all stays well.

Hugs,

Another Donna, Rob's wife

Hi Donna, Hubby Steve did CPT-11 and tolerated it OK...but he did feel blah and tired.  I think he accepted that it would be more taxing than the Avastin, and he just went with it.  Tumor-free so far after two years this Friday.  Stop by our Caring Bridge site (link below) and say hi.  We'll keep praying for your clear scans!

all love, janni

http://www.caringbridge.org/visit/stevecalloway

Donna, congrats on the two years! I hit my two year mark two months ago. I was on the ombo for about 30 infusons total over a span of about 15 months. Toward the end of my treatments my white call count started to decrease somewhat steadily and they removed the CPT-11 from the regimen. They didn't hesitate for a second. My onc is very aggressive and prefers to administer the combo, but he's cool with Avastin alone (or Avastin with temodar? if you tolerated that well). The alteres blood levels is a reaction to something, and the only way to know what is to alter something and see if it helps. Han in there, girl