Is My Body Telling Me Something

Hello eveyone first let me say thank you for all of your support.

Heres my problem dia nov.21, 2007 GBMiv had the surgery of course could not get it all which seems to be the norm went through six weeks of radiation and temador with no problems what so ever my surgeon wanted me on a temador regiment 5 days on 23 off for as long as my body will take it?well that went great for the 1st 2 rounds they up my dose to 440mg had me taking 4mg of decadron 2x a day 500mg keppra and 20 mg for high blood pressure. well in the beginning of march they said I was doing very well and that i could stop the steroids all together boy was that a mistake when I started my 3rd round of temador I started to get nasuea a little bit but nothing I couldnt handle but had no energy what so ever would sleep 18 hours a day so they gave me hydrocortisone 20mg 2x a day. not a whole lot of help still very tired not as bad. my onc said that some people have to stay on steroids that he would let me know on my next visit. Well I just completed my 4th round yesterday not good could not work this week very sick everyday and back to no energy and sleeping 18 hours a day.Is this my body telling me enough is enough or maybe I need to be back on decadron never had any problems when I was taking  that? Thank you for hearing me out and God bless all of you who are fighting this beast.

 Paul

I am so sorry you are going through this. When you ask is this your body telling you enough is enough. I have to say you will know when you are done. It sounds like your willing to put up a fight. Keep going. Do what you can do and any decisions you make are ultimitely yours. But trust your feelings. I believe you are feeling disappointed about the treatments not working well. And thats why your in question. Do what ever makes you feel good. For its your life and you want to make every last minute count. Keep fighting and stay strong, ask through prayer for stength to do what is best for you. I pray for you now. Dani

Sorry for your troubles. Are they monitoring your blood levels regularly? Your fatigue sounds like low levels to me, an amateur. True, the decadron will mask a lot of the fatigue but it won't do anything to mask your platelets or wbc. Good luck. Hope you feel stronger soon.

Thank you for your response and thoughts I get blood work every month and my counts are outstanding abve normal across the board. I guess its just a battle everyday. something you cant prepare for in advance never even been to a doctor before the beast showed up.GOD BLESS all of you

Paul 

Paul, Sorry to hear of your recent struggles. Are you taking an anti-anemic like Zofran or Kytril before taking the Temodar? These medications are prescribed for my wife to block the nausea that the Temodar causes. Most of the people I know who take Temodar also take these 1 hour before taking the Temodar. Perhaps you do take these and that is not the issue, but I thought it was worth mentioning. Brandon.

My husband was taken off decadron and within 2 days couldn't speak correctly and his right side was weaker.  Was put back on decadron in October 2007 and speech became normal.  The doctor tried to take him off decardon in March on the 17th, 2008 and again in 2 days he lost his speech.  Back on decardon now.  His speech is better, but he is confused and his right side never came back.  I don't know why they tried to wean him off decadron . Good luck to you.  priestswife

Hi Paul.  I think going back on the Decadron could definitely help you.

My husband was diagnosed 4/07/07 with inoperable GBM IV.  Standard radiation (34 treatments) while at the same time taking 160 mg of Temodar each day.  Unfortunately, post rad MRI showed progression.  So instead of putting him on the higher dose of Temodar as was the plan, they immediately started him on Avastin and CPT-11. 

We've been up and down on the steroids.  He's never been able to get off them.  When he has been tapered down low on the Decadron, his side effects from the treatment worsen considerably.  More nausea, no appetite and sleeping 18-20 hours a day.  Back up on the Decadron and things improve. 

In Feb. we tapered him down to 1.5 mg of the Decadron and the docs added 30 mg. of Cortef (a hydrocortisone) per day.   I give him 1 mg. of decadron in the morning, along with 20 mg. of Cortef and 5 mg. of Ritalin. He was also getting another 5 mg. of Ritalin at noon.   At 4;30 he takes .50 of the Decadron and 10 mg. of the Cortef.  The idea was to get him on the hydrocortisone and then remove the Decadron.   Well, he had his appt. in the Brain Tumor Clinic at Duke last Wednesday following another good MRI.  I discussed the Decadron, hydrocortisone and Ritalin doses with the doctor and physicians asst.  I told them I knew that he was doing as well as he is due to the decadron and hydrocortisone.  Their response was "then let's leave the doses as they are."  "Why rock the boat?"  The only thing we cut out was the noontime dose of Ritalin. 

They explained that the hydrocortisone is like a tiny steroid.  So, your doc is correct in that some people can never get off the Decadron.  We've been so fortunate that my husband has tolerated the Decadron ok.  No really bad moods from it.  Well, that's not entirely true - he sometimes has less patience and can't tolerate a lot of stress, chaos, noise and confusion in his life, but overall the decadron has been an immense help.  I cannot imagine where we would be without it.  Sure, his legs are skinny and his arms are too, but his overall quality of life is pretty darn good.  He gets somewhat nauseated the day he gets his Avastin / CPT-11 infusions.  He doesn't want much to eat that day, but he has been bouncing back within a couple of days.

So far, so good.   It's a roller coaster and that's for sure. 

I hope they can get your meds adjusted so that you too will get to feeling better.

Best to you,

Barb