Post-hospital questions

[LAinNYC]

My husband was released from the hospital Friday after 2 weeks of IV treatment for fungal pneumonia, contracted (we think) during the 6 weeks of Campath injections to treat both the CLL and the rare anemia (PRCA). It appears that the Campath is working, he's been transfusion-free for almost 2 weeks, and his retics are looking good. My main questions are how to ensure that the pneumonia is completely gone, and should testing for CD4 and CD8 be a consistent part of blood work, as it would be w/HIV?

[Cllcanada Top Poster CURE Hero]

Great news...

I would leave that to you doctor, however post RT, I get T cell counts every draw...

~chris

[LAinNYC in reply to Cllcanada]

Thank you, Chris !! We looked over Larry's printouts and haven't found it, so he'll ask Dr. Lamanna when he sees her Tuesday. Does the t-cell info help you re: precautions, or does it affect treatment, also?

[Cllcanada Top Poster CURE Hero in reply to LAinNYC]

CD4+ T cells can get very suppressed on treatments like FCR and RCHOP... so like HIV patients you are subject to some of the weird problems they experience... often fungal...

It is an indiction of where the immune system is and how it is recovering...

Here is a 'chalk talk' from Khan Academy on these... not CLL Specific

khanacademy.org/science/hea...

[LAinNYC]

We just watched it, very informative... we were made aware early on of the importance of the neutrophil count, and haven't been tracking t-cell numbers. It's good to know this info going forward, particularly since we expect that the treatment recommendation will be to resume Campath, and we are QUITE MOTIVATED to avoid another infection requiring hospitalization :). This was Larry's first, scary as hell...

[Cllcanada Top Poster CURE Hero]

Campath was used in 17p deleted 10 years ago, not much of a market so it was rebranded, increased in price and removed from CLL mainstream... and appeared as a treatment of multiple sclerosis as Lemtrada...

[LAinNYC in reply to Cllcanada]

My understanding is that it was removed from wider use in CLL after the discovery of its benefits with MS, a much more lucrative market... it's now provided free of charge to CLL docs following a case by case approval process. It was recommended for Larry because it treats both the CLL and the rare anemia (PRCA), and his doc has experience with its use. Dr. Sharman has a good posting about it on his site.

[bkoffman CLL CURE Hero]

T cells can be depleted for a year post Campath. Checking counts is good. Prophylaxis is better. Stay strong Brian CLLSociety.org

[LAinNYC]

He's been on prophylaxis meds, not anti-fungals until the hospitalization... any other strategies we can utilize? Many thanks...

[Cllcanada Top Poster CURE Hero in reply to LAinNYC]

As I recall from the old days... CMV reactivation was seen on Campath, so antiviral prophylactics are vital...

[LAinNYC]

He's been on antivirals, no protection from fungus, alas... we haven't been able to look at a mushroom for weeks!!