Cough and CAL 101

[Guest guest]

Does anyone have any information regarding a severe cough

while taking CAL101. My husband has developed quite a

severe cough, feeling as though there is a mass in his

throat or upper chest area. He has post nasal drip and so

has often had a cough but this is quite distressed. He was

put on a round of antibiotic by his GP which removed most of

the problem, but as that has finished the cough is

returning. A CT scan came back clear. Any insight would

be appreciated as it is very physically draining.

Beth

[Guest guest]

Yes. My husband and mother-in-law are both taking CAL-101.

My husband hasn't had any problems with a cough, but my

mother-in-law has one almost all the time. My husband is on

50 mg. and his mother is on 100 mg. (previously 150 mg.).

You should consult your CLL doctor for this and not just

your GP. My mother-in-law was diagnosed as having bronchitis

by her GP and it turned out she actually had pneumonia. This

was in January. She was hypercalcemic, which caused

dehydration. But her GP diagnosed it the other way around

(dehydration primary diagnosis, hypercalcemia secondary).

I knew this wasn't right and feared she was more seriously

ill than her GP thought. I called our CLL doctor (Dr. Flinn)

with my concerns. He agreed the dehydration was caused by

hypercalcemia and had her come to his office immediately

after she was released from the hospital nearest her. (She

lives three hours away but sees Dr. Flinn here for her CLL

at my urging.) She was admitted and diagnosed with pneumonia

and it was severe. She was in the hospital a total of two

weeks (spent three nights in ICU). She ultimately did

recover and is doing fine, but Dr. Flinn said that lung

inflammation is proving to be a side effect in some patients

(24% I think it was, not sure off the top of my head). She

is taking acyclovir and dapsone prophylactically and he

reduced her dose of CAL-101. She's been fine, but she still

coughs (just not as bad). And if it gets worse, she won't

think it's nothing again. I kept telling her not to ignore

it. But then, when she finally went to her GP he

misdiagnosed her. And I think she could have died if I

hadn't gotten her to Dr. Flinn.

She is also approaching her 79th birthday. And I'm sure age

plays into some of the side effects as well. But I wanted to

respond and urge you to be on top of this! Don't let it turn

into something serious.

Shari

[Guest guest]

Dr. Furman:

There are a couple of patient reports out there discussing

lung issues that may be associated with CAL-101 therapy -

specifically, lung inflammation, low oxygen saturation

levels, coughing and dizzy spells on account of the low

SATOX. I saw numbers as low as 89% oxygen saturation !!

That sounds a bit scary.

http://sharihowerton.blogspot.com/2011/05/marian-update-cal-101.html

Please comment.

Thank you,

Larry

[Guest guest]

We have not seen cough as a side effect of CAL-101. The

fact that the cough returned as the antibiotics completed

suggest an infectious etiology for the cough.

Rick Furman, MD

Beth wrote:

> Does anyone have any information regarding a severe cough

> while taking CAL101. My husband has developed quite a

> severe cough, feeling as though there is a mass in his

> throat or upper chest area. He has post nasal drip and so

> has often had a cough but this is quite distressed. He was

> put on a round of antibiotic by his GP which removed most of

> the problem, but as that has finished the cough is

> returning. A CT scan came back clear. Any insight would

> be appreciated as it is very physically draining.

[Guest guest]

Being on a clinical trial, it is always the Trial drug one

thinks of first when a complication comes along.

I had been taking an ACE inhibitor (Lisinopril) primarily

for its Nephro (kidney)-protective effect but also to

control high blood pressure after my failed TX reaction to

Rituximab in March. One of the side effects of ACE

inhibitors is a persistent dry cough. When I experienced

angioedema (swelling) of my facial tissue I first thought of

the Trial drug PCI and secondarily of the recent drugs I was

put on (Valtrex and Allopurinol) or some drug combo

interaction as the cause. It was most likely the Lisinopril

(ACE inhibitor).

The cough you describe sounds more serious than the

unproductive cough produced by something like the Lisinopril

I was taking but you should look at ALL medications being

taken both singly and in combination before jumping to the

conclusion that it is the trial drug. Websites by Trial drug

companies will list reported symptoms of patients using

their drugs. Sometimes it is useful to see if the symptom

experienced is typical or atypical for patients on a given

Trial drug. My angioedema was an atypical symptom for the

PCI drug I was taking, tipping me off that it was probably

caused by something else.

Difficulty in sorting out causes of complications arise from

what condition our immune systems may be in as a result of

just having the cancer and the history of what past

treatments may have done to our bodies.

Seldom easy answers in CLL land.

WWW

[Guest guest]

The cough has now turned to pneumonia it seems. The local

ER did a chest xray and it comes back looking like popcorn.

Tested positive for viral in a nose swab. The cbc is

normal, oxygen " ok " . But he is now running a fever of 102.

They gave him an antibiotic and sent him home.