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....
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
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
Hi Lorraine,
Sorry to hear about the reaction to the chemo. My Mom's history was very similar and also very different.
After the second round she had a similar exhaustion and her WBC was about 3500. Now the one thing the oncologists do not always mention is the ratio
of viable, healthy cells to cancer cells. My Mom was around 40000 count after 1st round, but the ratio was not good. Only about a 15% of these were healthy cells.
After the second round about 25% were healthy (so around 850) - it was a tough time for her. She did not have to go to the hospital right away. We really had to force her too eat
and keep hydrated. In her case fruit really came to the rescue along with vitamin water dilutes to 50% and an Ensure-type supplement. I was watching her diet as carefuly as
she would allow. Now my Mom had a host of skin problems that followed - the diagnoses ranged from who knows to scabies. Eventually her fever began to be consistently high
finally peaking at over 103F. There were several doctors involved in her care and they just shuffled her back and forth - one would prescribe an antibiotic and the next would change it or add to it
She had her treatment changed about once a week. Finally she had to be admitted because of the fever out of control and it was difficult to heep her eating and hydrated.
There were 2 huge issues. The first was the lack of concensus among the Dr's. The only one that was adamant (the dermatologist) said this is a reaction to the chemo. This was emphatically
denied by the oncologist when I said I had read about a reaction, and basically told me that I did not knopw what I was talking about. The infectious disease guy at least listened when I asked about
Multiple Drug Hypersensitivity (which he had never heard of) and asked if I read it "on some popular public website" and cautioned me against "inacurate information ciculating on the internet".
He was surprised when I cited the JIACI - Journal of Investigational Allergology and Clinical Immunology article http://www.jiaci.org/issues/vol15issue04/9.pdf
So I went home and id my research on the Teanda website and printed out the information supporting my claim - right there on the first page.
The lack of agreement by the doctors and the past couple of weeks of constantly changing antibiotics, corticosteroids and a couple of topical Rx had compromised my Mom's ability to cope with all of the rollercoasting of chemicals. MDH - Type B reactions are hypersensitivity reactions that are unpredictable and not dose-dependent. They lead to objectively reproducible symptoms or signs at a dose tolerated by normal people.3 Type B reactions comprise about 10%–15% of all ADRs. Drug allergies, which comprise 5%–10% of ADRs,4 are hypersensitivity reactions that involve an immune mechanism (IgE- or T cell-mediated, or, rarely, involving an immune complex or cytotoxic reaction). All other hypersensitivity drug reactions without an immune mechanism (5%–10%) — or in which an immunological process is not proven — are classified as non-immune (or non-allergic) hypersensitivity reactions (Box 1).3
She did not get better the first 2 days in the hospital - then second day her fever was worse than ever even though she was on constant IV antibiotics. After I read the article about hypersensitivity and confronted the Dr's, her oncologist called then nurse and asked her to discontinue everything except the medication - oral for her itch. IN 12 hours her fever was gone, and she was eating and drinking very well. After 2 more days on no or little fever she was released. She has not had anymore chemo.
The next day the oncologist came in and retracted his statement sbout the Treanda and its effect on her skin, but that the fever was something else. The infectiuos disase guy came in and said that yes it was likely that my mom had MDH. She did quite well for a week or so, and then again having skin issues - another round of Dr's appointments and again she landed in the ER. Again admitted - this time for an infection/cellulitis on the trigeminal nerve next to her eye which caused Bell's Palsy and and outbreak of shingles (her 2nd in 2 years - the first episode was attributed to a reaction to antibiotics.
The second critical issue is communication. I watch the Dr's dealing with my 80 year old mother. They treat her with patronizing tolerance. Like THEY are doing HER a favor. She tries to tell them what SHE is feeling, how here body is reacting. Only one of the 7 doctors that have been treating her actually listen. Nor do they seem to really communicate among themselves, and if I do not hound them or go to every appointment with my mom they don't seem interested in my concerns.
Why am I telling you all of this ...
The Treanda did well vis-a-vis then WBC, but the complications were close to devastating. My Mom's oncologist has agreed that she cannot have another round and basically said he has exhausted any treatment plan, so hopefully her numbers won't climb because he won't be able to help her (he has since been fired by us). Explore the Teranda website http://www.treanda.com/
Ask for copies of his bloodwork and do some research. Not everyone agrees on what blood tests actually mean. My Mom's oncologist basically looked at WBC and the proportion of cancer cells to healthy cells, but I had to ASK every time about neutrophils and eosinophils. When they tell you this is an infection - then why is the WBC staying constant? This is an allergy - then why aren't the eosinophils elevated? I don't know what else is going on with your husband - one would thing the cavities would raise the WBC - but - in my Mom's case the antibiotics were actually getting in the way of her bodies ability to get going on its own. You probably already know that everytime your husband gets chemo it is like the first time. Nothing stays the same and the environmental and emotional factors are constantly changing. The latter is so volatile and I watched my mother sink into deep despair when there would be periods of no improvement. Also the time treatment is scheduled is important. Our Dr. wanted to stick with every 21days no matter what - we did have to say re then 2nd round that she was still to week and made him delay. I can definitley say that the knee-jerk to prescribe massive amounts of antibiotics is rampant and has done my mom more bad than good.
I hope some of this helps. At least know that you are not alone. I have learned the hard way that you have to press and stand your ground. If are not getting then treatment and response you think appropriate, ask for the hospita's Patient Advocate or Quality Assurance person - you will not a definite difference in bedside manner. Prayers and positive energy to you and your husband.
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 :-}
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.....
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.
Glad to hear it!
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.)
Thank you to everyone who has responded.
Things are status quo for us now. Mom's blood counts are good.
She suffered an outbreak of shingles and a case of Bell's Palsy which is improving.
The most important lessons that I have learned:
First and foremost everyone who treats or assists in treating is accountable to you and the patient.
They have a livelihood that is directly related to you or your loved one's unhappy situation.
Without all of the sick people that they see they would have no jobs.
Anything that upsets should be reported to the Quality Assurance office or Patient Advocate - trust me, it works!
Ask questions - no matter how stupid you think they might be.
An "I do not know" kind of answer from anyone especially the Dr is NOT ACCEPTABLE.
Educate yourself!
Read, read. read.
Google questions and read the various answers.
Use local resources and support groups.
When a Dr. prescribes something - ask why and for printed information about the drug before you leave the office.
If they say you can look it up on the internet - so can they - ask them to print it for you.
And when you get home look it up again and check other references, blogs, etc.
Drugs affect different people differently, especially when they are used in concert with one another.
Keep a journal...
Write down everything - the time, the procedure and who said what.
If you have a family member hospitalized try to have someone there at all times to keep the journal (within reason).
There are folks in all of our lives who cannot be part of the solution.
This is not the time to have to deal with other folks stuff.
This is particularly hard - maybe the toughest thing.
I wish you all well, and I imagine will hear from some of you again.
Continue to stand up for yourselves and one another.
God speed.
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
Hi Lorraine,
Glad to hear that things are looking up. The NEU (Neutrophil count) is in the ok range from what I know. Below 2,000 (2.0) is neutropenic.
It means that his body is managing to fight infection. Less stress helps fight infection, too.
I am learning that leaving "small" stuff out of the equation is a s good as any med. - meditation, massage (with ok from Dr and not when taking chemo),
a really good movie or play that elevates - something of joy - works wonders.
Hang in there and I will be sending you positive energy.