Ticked Off

Warning..RANT!!!!

If it wasn't enough that the surgeon told us he got 80% percent of Rob's GBM tumor...only to have the radio-oncologist point out 2 tumors that weren't touched....and then we were told that Rob was going to get targeted radio-therapy...only to realize he is getting zapped on 3/4 of his brain...NOW I find out the pharmacy wrote his instructions incorrectly on his temodar bottles....the bottles say 160mgs monday through friday....i just spoke with Rob's neuro-oncologist's assitant and she says OH NO!!! he is supposed to be taking it 7 DAYS A WEEK....ARRRRRRRRRRRGGGGGGGGGG

Now Rob has to have an MRI next week to make sure everything is ok...because the temodar is all screwed up. 

The neoro- oncologist wrote the right script. and they say the pharmacy KNOWS that temodar is taken 7 days a week.
 crud!
thanks for letting me rant

Hi:

 It's healthy for you to vent once in a while. We are 9 months into my wifes GBM diagnosis and I've been there many times. As you are finding, you really need to watch everything regarding treatment and double check to make sure everything is correct.

 

Hope things go smoother for you....

 

 

C

OMG...it's all I can say.

 I've always wondered about the pharmacy people, though I know they are professionals, still every person's Temodar is custom made and it's another hope and a prayer they are getting it right.

 Keep the Faith, we are here for you.

I've recently started working as a Pharmacy Tech and I'll tell ya, check and recheck your medicines when you get them home! It gets extremely busy in our pharmacy and while that is no excuse for mistakes, it doesn't mean they don't happen. If you think something is off or you have questions don't even hesitate for a second to call the pharmacist. Our Pharmacists are all very caring people and unfortunately in my short time there I've seen mistakes and the Pharmacists I work with really take it to heart and do the best to make things right.

I'm sorry you are going through such a frustrating time. I think we've all had times when we needed to vent. Just remember, you are never alone on this site. Most likely if it's happened to you, it's happened to someone else and they'll be able to help you through your rant.

Let it out!!!!!

 

 

 

 

On 4/17/2008 momaton wrote:


Warning..RANT!!!!

If it wasn't enough that the surgeon told us he got 80% percent of Rob's GBM tumor...only to have the radio-oncologist point out 2 tumors that weren't touched....and then we were told that Rob was going to get targeted radio-therapy...only to realize he is getting zapped on 3/4 of his brain...NOW I find out the pharmacy wrote his instructions incorrectly on his temodar bottles....the bottles say 160mgs monday through friday....i just spoke with Rob's neuro-oncologist's assitant and she says OH NO!!! he is supposed to be taking it 7 DAYS A WEEK....ARRRRRRRRRRRGGGGGGGGGG

Now Rob has to have an MRI next week to make sure everything is ok...because the temodar is all screwed up. 

The neoro- oncologist wrote the right script. and they say the pharmacy KNOWS that temodar is taken 7 days a week.
 crud!
thanks for letting me rant

ps   After double checking with and getting the script, the neuro-onc did write the script properly. The pharmacy is a specialty pharmacy that deals with chemo all the time. the bottles even say take i hour before radiation treatments..Monday through friday.... for 42 days. So I do blame the pharmacy. They read the script incorrectly.
When your dealing with the only chemo approved by the FDA for brain tumor patients that have very little hope for a cure...it just blows my mind that the directions were not printed on the bottle correctly. And that I was stupid enough to trust them. What else can i do...call about every med...to double check?

sorry for the venting...i really don't get it!

Eve
---
DH Dx 02/22/08 GBM Frontal,temporal,parietal lobes, 80% resection(?) currently on temodar and 6 weeks radiation

 

Sounds to me like the Doc wrote the script wrong.  He should have explained to you that you should give the Temodar an hour before the RTs on the days you have radiation (which is always M-F.) Then the same time on the weekends.  The script should have said once a day for 42 days. The information about the RTs should not have even been on the script.

I do know that they are supposed to be given on an empty stomach and from other peoples experiences that Zofran (anti nausea med) one half hour before the Temodar  works the best for nausea (also worked best for my mom.)  Go to Temodar.com to read info on it.  It says 1hour before meals or at bed time is best time to take.  So to me, it would depend on what time your RTs are on when you should take it.  RTs are given same time M-F for the most part so if your treatment is at 1pm then you need to give the anti-nausea pill at 11:30 am and your Temodar at noon.  The same schedule would go on the weekends only you wouldn't have your RTs.  Your lunch would need to be and hour after the Temodar.

It's good to vent, some of the things that happen with all this can really piss you off.

You also have a lot on your head trying to remember everything.  I found carrying a little note book with me with all questions I had for EACH Doctor very useful.  You can also jot down anything you need to remember. Prescriptions you need refills for, etc.  I also keep another notebook to log when giving meds  and calendar with Appt dates beside each other, so I knew what was happening day to day.

Along with your husband, you will become exhausted with all this and you need a way to keep everything straight.  

Good luck and I pray strength for both of you.

Get your affairs in order before things get too complicated. Discuss all that you can because a time may come that you are left to deal with everything as I am now.

My mother lost her ability to speak after the biopsy and the use of her right side.  Her GBM was inoperable. We are currently in the hospice stage and I wonder every day if the decisions I have to make are the ones she wants. 

 

On 4/17/2008 momaton wrote:


Warning..RANT!!!!

If it wasn't enough that the surgeon told us he got 80% percent of Rob's GBM tumor...only to have the radio-oncologist point out 2 tumors that weren't touched....and then we were told that Rob was going to get targeted radio-therapy...only to realize he is getting zapped on 3/4 of his brain...NOW I find out the pharmacy wrote his instructions incorrectly on his temodar bottles....the bottles say 160mgs monday through friday....i just spoke with Rob's neuro-oncologist's assitant and she says OH NO!!! he is supposed to be taking it 7 DAYS A WEEK....ARRRRRRRRRRRGGGGGGGGGG

Now Rob has to have an MRI next week to make sure everything is ok...because the temodar is all screwed up. 

The neoro- oncologist wrote the right script. and they say the pharmacy KNOWS that temodar is taken 7 days a week.
 crud!
thanks for letting me rant

ps   After double checking with and getting the script, the neuro-onc did write the script properly. The pharmacy is a specialty pharmacy that deals with chemo all the time. the bottles even say take i hour before radiation treatments..Monday through friday.... for 42 days. So I do blame the pharmacy. They read the script incorrectly.
When your dealing with the only chemo approved by the FDA for brain tumor patients that have very little hope for a cure...it just blows my mind that the directions were not printed on the bottle correctly. And that I was stupid enough to trust them. What else can i do...call about every med...to double check?

sorry for the venting...i really don't get it!

Eve
---
DH Dx 02/22/08 GBM Frontal,temporal,parietal lobes, 80% resection(?) currently on temodar and 6 weeks radiation

The cancer treatment industry is the ONLY industry in the U.S. where the providers of the service get paid big dollars even if they totally screw it up and you have no way to make them fix there mistake.In short,failure is as profitable as success.

Thanks for all the support :)

Rob had his MRI yesterday. So we should know something on Monday. I looked at the images on my computer and compared them with his baseline one taken after surgery. there seems to be some growth in the tumors that were left behind..but it is hard to tell.

The other thing that occured to me is when we see the raio-onc on Mondays his nurse always goes through all the meds he is taking...i have told her 5 times about the temodar...wouldn't she know also that the dosing schedual was wrong?

Rob had colon cancer 1 1/2 years ago..surgery and chemo. What a completely different experience. His surgeon took it upon himself to be the leader of the team and everything went through him. He was awesome. Wish things were like that this time.

However I AM THE LEADER now. and everything will have to go through me and I WILL double check everything from here on out.

Thanks so much again,

You all are the best!, Eve

 

My husband was dx on Dec 29'07 and had surgery on 1/9/08 his tumor was 90% resected and it was located in the occipital lobe. He has lost right sided pheripheral vision due to the surgery. He  was on temodar 5 days a week 120 mg with radiation and now that radiation is done he will be doing the 5/23 schedule starting with May 5th. He had a MRI in mid March and the tumor is shrinking but the swelling has increased which has caused him to have seizures every other week in March. We are hoping that the dilantin and depakote he is taking now along with the decadron will prevent the seizures.The decadron has caused him double vision and focus problems. Every time he has a seizure it takes more short term memory away from him.