Help With Treatment Plan for Progression

My husband had an MRI today after 5 weeks and it showed tumor progression.  I knew something was up because he has been having word finding difficulties,increased headaches and fatigue.  It is low grade tumor that is spreading and having a mass affect and is starting to push on his motor strip.  The last 3 MRI's have been stable, but symptoms were increasing, seizures in particular. Goes to show why each MRI should be compared to several MRI's back and not just the most recent one. His NO went back to July today and saw a big change, whereas the radiologist compared to the one 5 weeks ago and said it looked the same. UGH! He was dx in 7/07, surgery 3/08 and has failed Temodar, cpt 11 and daily Temodar, and now CPT 11 and Carboplatin.  He has been on Avastin since March and will stay on that every two weeks.  His NO wants to put him on Etoposide and Cytoxin and in November (when we can get approval from the drug company) start Tarceva.  Has anyone else had success on Etoposide and Cytoxin after failing other things?  Also how about Tarceva?  I don't know much about it, other than to watch for the rash once he starts on it.  Please, any information will be appreciated.  This battle, like so many others, has gone on for so long, sometimes I feel so weary.  And the weather today in Ky is not making that any better!  We continue to pray every minute for a miracle for all of us...may God grant it.

Blessings,

Debbie 

God, I'm so sorry.  I know nothing about the drugs, only know of the temodar and avastin, so can't be of any help.  I wish.........well, you know we all wish that there was no need for you to seek advice, but all I can do now is to keep you in my thoughts.  Best wishes to you.

Donna l

My husband was put on etoposide VP16, cytoxan, Thalidomide and celebrex in the fall of 2004.  Avastin is kind of like thalidomide.  So this is similar to what he wants to prescribe. This cocktail gave his a high quality of life.  VP16 and cytoxan were given to him orally because they can be given thru an IV.  VP 16 must be refrigerated. He took this for 4 months and then had a surgery for progression.  The pathology was mostly necrosis with a few glial cells.  Maybe it was working.  He did gleevec, tarceva and hdroxurea in 06-07.  This gave him a high quality of life.  He did get the tarceva rash soon after starting.  We got it under control in about a month with antibiotics.  Supposedly if you get the rash you know its working.  After 4 months he started getting diarrhea from the Tarceva so they lowered it from 150 to 100 and then he was fine for many months.  Our insurance did not give us any problem covering the Tarceva. He had surgery after this combo and it was  100% necrosis.  So he decided to take a break from everything and it has been 2 1/2 years and he is doing well. He will reach 6 years in Dec.Who knows which of his treatments were effective.  He had so many.

Wow, what a journey.  Those darn cancer cells keep mutating to resist the chemo. It gives us courage however to hear of others who have persevered through so many different regimens. Courage! And the serenity to live each day.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

did he take CPT-11 and Carboplatin at the same time?

Was your husband ever prescribed Avastin?  My husband has been on it for more than a year, and the docs tell us he can't have another surgery unless he's off Avastin for at least 6 weeks.  I'm just curious.  I keep asking about a procedure to tell us what's going on in the tumor bed, but I keep getting the same answer.  Surgery is not the best option.  We must attack through the bloodstream to be the most effective.  I just want to know if we're seeing necrosis or if it's really tumor or both.

To answer some of the questions.  Yes, my husband did do Carboplatin and CPT 11 together.  He did CPT 11 and Avastin, then CPT 11 and Carbo and Avastin for several rounds.  He started Avastin in March when 2 very tiny spots showed up on the MRI.  The enhancing spots disappeared and have stayed gone, but the low grade tumor has taken off and is growing.  He  will continue to do the Avastin every two weeks and do the Etoposide and Cytoxin orally...then add Tarceva in November when our insurance runs out and hopefully the drug company will provide it for us.  We continue to pray almost every minute for a cure for this horrible disease...so many people who are suffering through this.  May He bless us all as we walk this road.

Debbie 

Debbie;

My husband had progression in July and had stereotactic radiation for 11 days on the new spot, started avastin and stayed on 5/23 temador.  After 7 rounds of avastin his MRI yesterday showed that all his sites, his has multifocal and inoperable, had decreased and no blood flow.  He had the mri with and without contrast plus perfusion.  However a new spot has developed also right next to his speach area.  NO said too close for surgery again.  He want Rob to start another round of stereotactic radiation  because this area had no prior radiation.  I have to say all this radiation makes me nervous.  The NO said well it worked for him before. Rob does have short term memory issues and some confusion and can't take too much stimulation or excitement.  He has great faith in this brain tumor team from Jefferson University Hospital in Phila.,  They do have a good reputation.  He will not consider a 2nd. opinion and I am stumped.  Why doesn't any other Drs. use this treatment instead of the chemical treaments.  I mean he is on avastin and temador but when I ask about cpt 11 or anything else.  You could ask your Drs. and see if this would be something that may work on progression.  Rob's NO said it is a precise way to stop the growth of the tumor before it hits the speach area if it continues to grow.  RIght now he has no deficits with speach. Just a thought and if you have any advice please share.  Thanks, Hugs and prayers to you and your husband.

Donna, Rob's wife