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13 Replies Last post: Nov 14, 2009 8:09 PM by Pono  
Pono   6 posts since
Aug 31, 2009
Currently Being Moderated

Aug 31, 2009 9:50 PM

Treanda side effects

If anyone can help. I am at my wits end.

My 80 year old mother has had CLL since 2003.

In 2007 she nearly died, but finally came back.

The CLL came back and she underwent 2 rounds of Treanda.

Then she got a case of redbugs - not smart, followed by what the dermitologist said was scabies.

She had that treatment but the rash spread to her entire body and then after about a month (she missed round 3) a horrific snkin condition on her hands.

It looked as though she had put her hands on a red hot ceramic cook top.

Her fever has always "cycled after the chemo" and then gone away - this time she had spikes of 103 which finally put her in the hospital where she is tonight.

The derm said it was definitely a result of the chemo

The infectious diswase guy said it was the result of an allergeic reaction to a drug.

The oncologist said that Treanda doesnt do that (but the website says skin problems, dermititis, blistering)

She has been in the hospital for 3 days and they have not been able to do anything for her and at least once a day she spikes to above 102-103

Now thaye have stopped all meds except prednisone and atavax (for the itching) and stopped IV fluids.

She is very weak, loss of appetite and very little dark urine.

I am very afraid and get no help - the doctor would not even called me back when I asked why he stopped the IV saline. He said through a clerk to ask the nurse. The nurse said she did not know.

(The IV was started by another oncologist on call over the weekend).

 

Has anyone else experienced similar events? She had another 102.9 this evening and they just gave her tylenol.

 

Would apreciate any input....

sha_shelt   543 posts since
Apr 3, 2009
Currently Being Moderated
1. Sep 1, 2009 12:03 AM in response to: Pono
Re: Treanda side effects

Hi pono,

 

First, so sorry your Mom (and you) have to endure this.  I have no experience with Treanda or with CLL (I have it's "cousin", NHL) but I do have some experience with idiots disguised as medical "professionals".  I'd be screaming to high heaven demanding some straight answers starting with the IV issue!  That is preposterous that they would stop a saline drip!!  For crying out loud you go to the ER for a sprained ankle and they'll start a saline IV!  And your Mom is obviously dehydrated (limited amount of dark urine.....you think they'd have a clue there, huh?) and they STOP the saline??  Are they nuts?

 

So starting with the nurses, (remembering they can do only what the docs order) find the one who seems to be a true patient advocate - there is always that "one" (bug them all fif you have to) and be straightforward about the hydration - and to get a doc on the horn to get the orders.  Not being properly hydrated can lead to all sorts of other issues - including death.  As for your Mom's oncologist, there's surely an answering service for after hours calls - call them....NOW.  My onc's office number rolls over to the answering service when the office is closed.  Keep calling if the onc doesn't call back.....every 10 minutes if that's what it takes....tell them it's an emergency....tell them whatever you have to.  Someone needs to ensure your Mom is hydrated and as comfortable as she can be made - it starts with you.  You are her voice right now.

 

Don't be afraid of the "lab coats" - you have only 1 Mom and if your gut is telling you something needs to be done or something more can be done - then listen to your gut.

 

Good luck, keep us posted, and go get 'em, Tiger!

Sharon

Rick-IA   10 posts since
Aug 5, 2009
Currently Being Moderated
2. Sep 1, 2009 12:27 PM in response to: Pono
Re: Treanda side effects

I would think that Cephalon (the maker of Treanda) would want to know about this and I hope that they could help you on this. Their website has the following contact information: To report SUSPECTED ADVERSE REACTIONS, contact Cephalon Inc., at 1-800-896-5855 or FDA at 1-800-FDA-1088.

Rick

lorraine   4 posts since
Nov 2, 2009
Currently Being Moderated
3. Nov 2, 2009 12:46 AM in response to: Pono
Re: Treanda side effects

hi,

I hope things are well by you at this time ;-}     My husband has been diagnosed with CLL for almost ten years.  He has had a couple of different treatments and many times where he was all clear!!!!  Two months ago he had pet scans and they showed more activity in his lymphs and bigger size.  The doc said he wanted him to have treanda and rituxan.  He has had two treatments and a couple of days after the second treatment he did not feel good,    very tired, croaky throat and he was getting a temp.  He was put in the hosp.  a week and a half ago, with a temp of 102.    he has a low WBC, it was 0.5 on admission, it went low and then up but not past .5   ........he has a sore throat and a couple of cavities that are killer for him.  He is on a new antibiotic  and an antifungal med, and is getting neupogen shots to raise the white bloods.   Like i said its been over a week and a half and he hasn't had any increase.   He is on intravenous  sugar water, and is very weak, but we are at a watch and wait for the WBC.   It IS totally frustrating.  I try to keep his spirits up but it is soo hard as I am the one he really tells anything to. They ( the docs) all say that the whites will jump back, but its been a while already and he is losing hope.  I am doing what i can but It is SOOOO scarey.  I would love to hear from people that have been down this road.   I want positive inforcement.  Like you say the docs pretty well steer clear!!!  Not a good thing for a caregiver, my husband is 56, and has been on this road for a long haul, he is a tough cookie but there arent many answers.   I am look everyday for a white count thats higher, and they say it WILL come.       Once it starts we will be in a better place.   If you have any more info on this drug please let me know,     God bless you and yours ;-}

Lorraine 

lorraine   4 posts since
Nov 2, 2009
Currently Being Moderated
5. Nov 6, 2009 10:13 PM in response to: Pono
Re: Treanda side effects

Hi again ;-}

Well, after numerous antibiotics and neupogen shots my hubbys WBC has climbed from 1.9 yesterday to 7.9 today!!!!!!!   When I talked to the nurse i thought she had told me of another patient!!! but nope, it was my hunny.  The nurse talked to me today, and said.... The treanda killed everything which we all knew, but as johns WBC was so low, he had gotten a sore throat which thrived in him, the esophagal? scan showed ulcers all the way down his throat so THAT was the infection.  The anti biotics were changed by the infectious disease person, yes there have been a couple of fevers in the passed few days but they have gone away again  as of a day ago.;-}     His counts are climbing but his platelets are 18...........He was given a shot today to boost the reds and it is promising that this will help his platelets rise.  As of now he may be coming home on sunday!!!! yay!!!!    His doctor had said he wont give him the chemo and after reading your mail i am a little worried as he said that he would be putting him on different anti biotics until he figured out what he was gonna do. I do get print outs of the blood work but i really only understand some of them, you know .....the WBC hemoglobin RBC and platelets.    I am looking forward to him coming home then us visiting HIS oncologist and not others and we will feel more comfortable.

I appreciate you writing me back.  Its a very hairy situation but we DO get through it.  I shall keep you nformed as I am glad for your input.

Hope is all well by you.

Prayers

Lorraine :-}

WilloB   11 posts since
Apr 4, 2009
Currently Being Moderated
6. Nov 9, 2009 5:27 PM in response to: lorraine
Re: Treanda side effects

I experienced similar side rffects w/ Trenda + Rituxin...MY wbc went down to 1.6  my neuphils went to .1 ... I developed a fever for a day... My doses of Trenda were cut in half after my 3rd of 6 treatments... My neutrophils remained low 3 months after treatmrnt was completed.  I got shots of Neulasta every 2-3 weeks which shot my counts off the charts... My oncologist said it was due to a T cell inbalance caused by the Trenda.and Rituxin.  My current counts are all very good haven't had to need a booster shot since late August.   My only problem is a swollen lymph node under my arm...

 

I had FCR plus Campath for my first round in 2005... No question for me  Trenda was TOUGH STUFF...  There are new drugs coming out in a few months that have had good clinical trails for FCR refractory patients...

 

Hope this helps .. All I can say it is a journey.....

lorraine   4 posts since
Nov 2, 2009
Currently Being Moderated
7. Nov 10, 2009 11:04 PM in response to: lorraine
Re: Treanda side effects update

Hi,

well my hubby came home sunday, he is on nothing but the coumadin, his doc has him coming in for blood work on thursday of this week and a doctor vist next thursday!!!!   When we left the hospital his wbc was over 12, platelets at 57 .  He is pretty weak, but a fighter!!!  He his home and eating very well and trying to get his strength back.   Life is SOMEWHAT back to a norm.  Thanks for responding, i shall keep you updated.

Westiemac   20 posts since
Sep 4, 2009
Currently Being Moderated
10. Nov 12, 2009 10:21 PM in response to: Pono
Re: Treanda side effects

   Oh my gosh! All of this is really scary. I was diagnosed three years ago this month with cll. My oncologist told me yesterday that my platelets are low and that he felt it was time for chemo. His office called me this morning and I am set for my first dose of Treanda on December 3 and the second dose on December 4. (I have had a cough and cold for several weeks that won't go away and he wants the antibiotics that he prescribed to clear that up before beginning treatment.) He assured me that Treanda would not have the harmful side effects of other chemo drugs (thinning hair/nausea). Actually, it sounded like there would not be any bad side effects at all. Is he wrong? Should I expect side effects?

    On another note, I am so glad that the first writer "went to bat" for his mother. My own mother did not die of cancer, but the doctor in the small town where we live almost let her die of neglect when she was hospitalized for an infection. Mother had various infections and her doctor kept prescribing antibiotics. Even though my sister and I kept filling her with Ensure and whatever else we could get her to eat, she didn't have an appetite and lost A LOT of weight. My husband and I took her to the hospital's emergency room where her doctor practiced and they admitted her. Shortly after she was hospitalized, the nurses (on the doctor's orders) took away her IV fluids. She was very nauseated and I spent most of the day holding her head while she threw up. (My sister was at home caring for our invalid father and couldn't come to help.) The hospital was short on staff and the few nurses available pretty much left her care to me.

   By that evening, even I could see that Mother was near death. I was exhausted myself and pretty pissed off at this point. I called the doctor at home and she had the nerve to say that she would come by the hospital to see Mother, but that she had a function to attend in a neighboring town and that I needed to realize that my mother was old and dying. It was about this time that my aunt (Mother's sister and a personal friend of this doctor) came in and I cried and told her what the doctor had said. Well, the doctor did come in, my aunt handled her doctor friend, and shortly thereafter, the doctor left town and began her practice in a different city. We moved Mother that same night to a hospital in a bigger city nearby and she was treated very well there. Of course, by now I was like a hawk and stayed near Mother to make sure she received the proper care. It taught me a tough lesson though: Doctors don't know everything and NEVER AGAIN will one of my family members receive anything less than the best care. (I applaud you readers that have been so vigilant in your family members' care. Bless you. There are some wonderful, caring doctors out there, but there are also some that feel superior to the average layperson.)

lorraine   4 posts since
Nov 2, 2009
Currently Being Moderated
12. Nov 13, 2009 11:12 PM in response to: Pono
Re: Treanda side effects update

hi again:-}

Update on hubbys  bloodwork, well, here goes WBC has dropped to 3.64 which is way lower than 12 but hey just below normal, and platelets have climbed to 202!!!, I understand that some of the shots he was given in the hospital are starting to wear off and we will see what his body is actually doing.  RBC is 4.42 Neu 2.45 67.5%   i really dont understand that one but i read that they are important.      He is doing well, weak yes, but eating well and walking to build himself up.  He has gained a pound and a half in 6 days!!!!  at home.  We have the doc appointment on thursday to see where this is going.    Truly have no idea at the moment.  Just enjoying this somewhat normallsy of having him home ;-}

Hope all is well ;-}

Lorraine

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