Torisel

Hi all,

  Just wanted to let you all know,my sister started torisel today.Within 2 minutes she turned red and quit breathing,they had to do a code blue,she is ok now.WOW.SCARY.Dr's decided to give her benadryl along with another med with the Torisel at a slower rate,she has now completed her first dose and is feeling ok.

  Please keep her in your prayers and positive thoughts.They are appreciated so much.Will let you know of her progress and side effects.Hope this will help alot of peoples

God Bless all of you

We pray for you and your families

Susan 

Good morning Susan,  I am happy your sister is ok now, but my concern is..I read several articles on the Torisel, as they were going to switch my husband to Torisel if the Nexavar wasnt working well.  Fortunately he didnt have to switch.  However, EVERYTHING I read about the Torisel said that Benedryl was given 30 minutes prior in the IV before the Torisel started to drip, to avoid the situations that happened to your sister.  Thank God she is OK.  I would question the staff who didnt follow that procedure, as you said it is really scarey.  Whew... I hope she does well on the Torisel. Man that is a scarey situation.  I will keep positive thoughts for your sister.  Good luck and have a wonderful day.  Laura

Hi Laura,

  Thank you for your concern.We thought we had lost her.Actually the Dr's did start Benadryl and a steriod then started the Torisel.Added more Benadryl and tagamet then started the Torisel back up at a slower rate,What would have taken 1 hour will take 3 hours now.

  Talked with her this morning,asked how she felt after yesterday.She said she felt better than she has in a while.PRAISE THE LORD.

  She talked about seeing the bright light.She doesn't remember much other than the bright light,but says when she came back she had a very peaceful feeling and wasn't scared anymore.

I will keep updates on here for anyone interested in knowing how the Torisel is working etc.

Thanks and GOD BLESS

Susan

Oh Susan, that is wonderful news. I am so happy Connie is feeling better. I truly hope the Torisel works well for her.  I had myself upset yesterday when I first read your post. I almost feel like we all have to help watch out for each other.  Again, I hope Connie continues to do well and please keep us posted.  Laura

Just finished reading your message and yes, it does sound very scary.  My husband will begin Torisel in about a week and I'm just wondering, why is the Benadryl used?  Can another drug be used instead such as Demerol or similiar.  Apparently, my husband has been allergic to Benadryl in the past and after your sister's incident, I know we will be very anxious during his first treatments.  I do realize that using any new drug is always risky at first, as each person reacts differently to it. 

Please reply when you can and also, I'll keep checking this website for further updates on your sister.

 Dee

Hi All! My husband just finished his 4th dose of Torisel today.

 Dose #1 was frightening, as he had the exact same reaction as your mom. They quickly gave a steriod and he soon was stable.... after about an hour wait, they started up very slowly. The directions were followed accurately with the bendryl and the fluids before hand.

Dose#2 Same reaction as dose #1...very scary! Again steriod added and then ran slowly. All turned out ok.

Dose #3 Steriod on board the night before as well as additional steroid with the benedryl before running the Torisel. BINGO, that did the trick! Ran in half the time as the first time.

Dose #4 same as 3 but ran in an hour and 1/2. He is just fine.

Hoping for some magic here! Best wishes to you all!

Laurie

Wife of Dave Stage IV  clear cellRCC, Grade 3, with numerous lung mets, radical Nephrectomy after embolization to stop bleeding, Aug 2006, One month in ICU, Nexavar 4 months....disease progression. Brain met discovered. Gamma knife surgery on brain met after Radiation to right lung lower lobe, recent radiation to new tumor in renal cavity, now Torisel! Side effects seem to be much more tolerable than Nexavar...so far!!!!!

 

On 7/24/2007 Connies Sis wrote:

Hi all,

  Just wanted to let you all know,my sister started torisel today.Within 2 minutes she turned red and quit breathing,they had to do a code blue,she is ok now.WOW.SCARY.Dr's decided to give her benadryl along with another med with the Torisel at a slower rate,she has now completed her first dose and is feeling ok.

  Please keep her in your prayers and positive thoughts.They are appreciated so much.Will let you know of her progress and side effects.Hope this will help alot of peoples

God Bless all of you

We pray for you and your families

Susan 

Susan,  I am sorry to hear about your sister.  My father is 81 and had to be taken off of Nexavar because of the horrible side effects he was having.  The doctor is considering putting him on the Torisel treatments but we are scared he might not be able to stand them.  I feel that his age has something to do with him not being able to stand Nexavar.  If you don't mind my asking, I would like to know the age of your sister.  Thank you.  Take care and God Bless.

My sister just turned 58.She also did her 4th round of Torisel,and side effects is fatigue.I hear nexavar is a horrific drug because of the side effects.I have heard from some others that are on Torisel and they didn't have any problems,just the individual I guess.I wish your dad GOD SPEED.We will pray for him and you and your family.

Susan

Hi Susan,

My husband has had 6 torisel treatments so far and the 3rd was alot like your sister.  The first two he had no problems.  Now they put it in over two to three hours and he does much better.  He starts to have a reaction and they stop it for a while and then start it up slowly again. 

His reactions at home from the drug have been fatigue, bad rash, mouth sores and weight loss.  He also has had bad back pain.  I'm wondering after reading some other posts if this is also caused by the Torisel. 

Good luck to your sister. 

 

On 7/26/2007 Willard wrote:

Just finished reading your message and yes, it does sound very scary.  My husband will begin Torisel in about a week and I'm just wondering, why is the Benadryl used?  Can another drug be used instead such as Demerol or similiar.  Apparently, my husband has been allergic to Benadryl in the past and after your sister's incident, I know we will be very anxious during his first treatments.  I do realize that using any new drug is always risky at first, as each person reacts differently to it. 

Please reply when you can and also, I'll keep checking this website for further updates on your sister.

 Dee

The benadryl is used because some mat be allergic to something in the Torisel.  it is given in an IV with and anti nausea med, in my case, Anzamet, and Tagamet for Acid reflux.  Then after that is in you and not before do theystart the Torisel IV.

 I want to let every one readding my email that after 12 weeks and 2 PET/CT scans, I am cancer free, the tumor has disappeared,  Bless the people who had me in their prayers, the good Lord for looking out for me and a very good Oncologist who saw to it I got the Torisel after Sutent dropped my platelets to a dangerous low.

 good luck to all of you taking torisel, I know it works, I will take one more 6 weeks of it for insurance and another PET/CT Scan, and follow up Scans after that.

 My tumor was found after a routine CT Scan following a nephrectomy of my right kidney for cancer, and the RCC  mets to my lung. Quick work by a lot of Dr's and here I am writing a testamonial to Torisel.

 Diane