need help with dramatic change

Hi All,

 My mom was dx GBM 11/07. Had full resection and rad/temodar until recurrence 10/08. Since she's been on avastin/cpt11. Has been in a wheelchair since the recurrence apparently due to location of the tumor.

 In the past few days she's become extremely tired, barely eats or drinks, barely talks, seems like she's fallen off a cliff. Her blood tests have been fine, vitals are good, and we just had another MRI last Thursday that showed no further progression (third straight MRI that showed that). 

 Any ideas on where this might be coming from? She rarely slept during the day until last friday (a day after her MRI). She's currently on the 6th infusion in her current cycle and she did see a similar steep decline around this point in her first cycle (in January). She eventually recouped quite a bit from that up until last week. With no progression on the scan, blood and vitals ok, we're kind of at a loss. 

Any thoughts definitely appreciated. She's currently taking 6mg/day decadron though she hasn't been getting that much the last few days due to her current condition.

 Thanks..

Have they tested basic stuff like potassium? There's something like that... wish I could remember what it is but someone will... which seems to drop and leave people in a feeble state... and from which they can definitely recover with supplement therapy. I hope it's something like that. Worth asking about.

Hang in there... sending prayers.

Sarah

mom of Andy, 26 dx GBM/PNET 1/09

 

On 6/30/2009 a_mill7 wrote:

Hi All,

 My mom was dx GBM 11/07. Had full resection and rad/temodar until recurrence 10/08. Since she's been on avastin/cpt11. Has been in a wheelchair since the recurrence apparently due to location of the tumor.

 In the past few days she's become extremely tired, barely eats or drinks, barely talks, seems like she's fallen off a cliff. Her blood tests have been fine, vitals are good, and we just had another MRI last Thursday that showed no further progression (third straight MRI that showed that). 

 Any ideas on where this might be coming from? She rarely slept during the day until last friday (a day after her MRI). She's currently on the 6th infusion in her current cycle and she did see a similar steep decline around this point in her first cycle (in January). She eventually recouped quite a bit from that up until last week. With no progression on the scan, blood and vitals ok, we're kind of at a loss. 

Any thoughts definitely appreciated. She's currently taking 6mg/day decadron though she hasn't been getting that much the last few days due to her current condition.

 Thanks..

 

This is always so confusing. Why with no progression a decline.  I recently read that all brain tumor  patients who have had radiation may suffer from thyroid problems.  That would explain the sluggishness of the entire metabolism.  Sarah spoke about potassium. I wonder if drinking Smart Water- which has no sugar but electrolite  would help.  Just throwing anything out there.  So sorry about your Mom, keep up the good work of looking out for her.  What a loving daughter you are. 

Donna, wife of Rob dx 12/08

Decreasing Decadron quickly without a slow withdrawal can cause the symptoms you describe.  Try to get her to take the Decadron and call your NO about this change.  Any small virus can be magnified causing the initial symptoms and then the rapid drop in decadron could cause the continuation of the symptoms.

Good luck

JMB

I would check what the others wrote about. Anything at all can cause these changes. Electrolites off, steroid decrease, infection...bladder, sinus, anywhere...important to investigate all possiblilities. (Check her temperature to check for that). Does she take a multivitamin or eat well balanced meals, or does she often skip eating due to not feeling well?

It's good that you are paying attention and ready to find answers quickly. It is all so frightening, I know.

-Diana

You don't say how old a woman your mother is, but I can tell you that I usually suffer pronounced fatigue about 3 days after my infusion of Avastin/CPT-11. Everyone is different as to the days of the cycle they feel at their worst. Does she suffer diarrhea from the CPT-11? That can cause enormous fatigue and make eating unappealing. As the other posters have said, there are a multitude of reasons for her decline--and no reasons at all. That's what makes this illness such a mystery. All the best to you.

Thanks for all of your quick responses... My mom is 65. She had low potassium levels in one of her blood tests about a month ago but it has been normal since then. One thing that has been a little below the normal levels have been her liver enzymes?. I know the oncologist is watching that carefully now. She was only taking 6mg deca a day and this started before she basically got to the point of being almost too feeble to take any pills. In the past she hasn't had much fatigue after her infusions though which makes this unusual for us. Like I said, she did have a dramatic decline about mid-way through her treatment cycle last time so maybe the cumulative effects are now taking their toll. We're hoping they can give her some good fluids, electrolytes, and nutrients on Thursday when we go for the infusion. She'll be getting avastin only this time since her oncologist wants to leave off the cpt11 to give her body a break. 

 Any more ideas are really appreciated. Have I mentioned I hate this disease?

6 mg decadron is a large amount.  It took my husband weeks to get from that amount to 1 mg per day.  Believe me I have taken prednisone for other ailments and it is less potent than the decadron and if I came down too quickly I crashed unbelievably.  My husband got down to o mg of decadron and then had a virus (nothing much) and crashed such that the NO upped him to 4 mg a day rapidly decreasing to 1 mg per day.  Please make sure the NO knows that your mom has not been taking her decadron.

The decadron suppresses the function of the adrenal gland and thus the body cannot repond to stresses such as a virus or surgery.

JMB

Our nurse practioner told us that you have to be VERY careful about weaning off decadron. If you don't do it carefully it can actually kill you. After my husband's 2nd surgery for GBM the doctor (not ours) did not write the discharge orders correctly-so my husband stopped the dec too suddenly and have SEVERE pain-as soon as he was back on the dec he felt better.

Hi All,

 Happy to report that after receiving two IV bags of fluids, and some good family care, Mom is starting to feel a lot better. She's been sleeping much less and eating much more. Her face is looking much more "alive" and she even spent a few hours with a friend yesterday. She's still not talking much but she's talking a little and seems to be rebounding. What a scare! Hopefully she'll beging feeling much better and enjoy more life. Her tumor has been stable since October but it's still in a very debilitating location and the treatment is adding to it all as well. Her onc wants her to go a few infusions with just Avastin and leave off the cpt11 for a little bit. Hopefully it'll give her body a break.