My husband, 62, was diag. with chronic lymphocytic leukemia w/13q deletion and significant adenopathy/severe autoimmune hemolytic anemia.

[deb1610]

Diag'd on 3/26/14. He was two young for the Allibutrim(sp/) trial. Had three chemo treatments since with "Retuximab/Bendamustine (Trenda)" combination. After the second treatment, fevers- he ended up in the hospital for a week (low wbcs-4). Neutropenic I believe. They gave him a shot daily in his arm, just under the skin, of ? to boost the wbcs along with blood transfusion. He was good for the rest of the month. After his 3rd treatment on June 11th/12th, he had to go back to clinic for the same type of shot 24 hrs after treatment, but this one would last two weeks, and if he did get ill again, the clinic will give him fluids and/or blood instead of him going to hospital. He is doing great this time. No problems so far for the first time.

I never read anyone else using R and B. Also, I don't know where he's at in his treatment (good, bad, etc.) I don't quite know which cells on his CBC Flow Sheet are the most important to be able to tell if he's benefiting or not from the treatment. Doc never mentions this, and I didn't want to ask in front of Hubby, since he just does what is asked, and doesn't want to know for some strange reason.

Any input about all this out there? Thanks!

Also, does anyone think my husband may be able to work again?

Debbie

[AussieNeil Partner Administrator]

Hi Debbie,

Good to hear that your husband is being looked after well and is now doing well.

A recent trial comparing Bendamustine and Rituximab (BR) against FCR found that BR was equally effective for older CLL patients as FCR and was a 'kinder' treatment. Younger patients that can better tolerate FCR however, did do better on that than BR. Presumably your husband's specialist felt he would do better on BR than other available treatments due to his anaemia and 13q deletion.

Here are a couple of previous posts on BR:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

During treatment, all your husband's different blood test results will be monitored - the lymphocytes to see that they are being reduced by the treatment, platelets to ensure that levels remain high enough so that any bleeding will quickly clot, the red blood cells/haemoglobin to ensure he is not becoming anaemic and neutrophils (the largest proportion of white blood cells in healthy people) to ensure that he can fight off infections. Those injections to boost his falling neutrophils (which is why he had that fever) would have been a Granulocyte-Colony Stimulating Factor, something like Neulasta or Neupogen.

It's a bit hard to forecast whether your husband will be able to work again as there are so many factors. How good was his heath before treatment, how he'll feel after treatment, how well his immunity recovers, the type of work he's likely to be doing and the circumstances, part time or full time, whether he'd prefer to work or perhaps retire and enjoy his better health after treatment and indeed whether he needs to work for financial or other reasons.

By the way, you have plenty of company in having a partner that doesn't want to know the particulars of their condition or treatment and relies on others (partner, carer or even just the doctor or specialist) to take an interest. I'm sure your husband appreciates your interest to take that stress away from him.

Neil

[splashsplash]

Chaya wrote previously on CLL Topics in USA that we have to be our own best advocates as quite often with CLL we might be better informed than our health carers.

In my case the hospital made a mistake in the dosage of my FCR and I knew it didn't seem right to have two extra days of the Fludarobine but instead of ringing up and checking with the hospital, I thought they must know what they're doing and I went ahead and took the overdose. I so wish now that I had trusted my instincts and questioned it as I am permanently damaged from the mistake. We have to fight our own corner and not just be passive in our treatment.

[AussieNeil Partner Administrator in reply to splashsplash]

That's pretty bad mollyfletcher and I'm sorry to hear that this has happened to you. It is so easy to trust that you are being given the right drugs, particularly when you are likely to be feeling unwell, your are distracted by unfamiliar surroundings and so on. When I was recently in hospital for IV antibiotics, only one nurse made sure that I knew what was going into the IV bag and she was an agency nurse, not a permanently employed nurse of that hospital. When I thanked her for that additional attention to detail, she said she knew that I'd previously had a severe reaction to some antibiotics and hence appreciated how important it was to me that I knew I was getting the right drug and dosage. If only that level of attention was the rule, not the exception, you and many others would not have permanent repercussions from incorrect treatment.