Hi! New Member

[Guest guest]

Found this site today after visiting my pulmonary doctor and looking

up some information. I have Triad Asthma which I have had for years

but only recently knew what I had. I had a very bad bout with

pneumonia in April of this year and still not well from it yet. I was

assigned a pulmo doctor in the hospital who told me what I had. I go

to a asthma/allergy clinic and they never diagnoised me. They knew I

had more than asthma because I have bad sinuses and allergies and

also have problems with my eyes (also due to allergies.) I had total

sinus recontruction years ago to remove polops and clean out my

sinuses.

I have been allergic to asprin since I was probably 20 years old. I

took a alkazelzer and had a bad reaction. Could barely breath, my

airway was constricted and my eyes swelled shut. Went to the doctor

and was told to NEVER take asprin again....very allergic.

Hope to learn more about this disease as my pulmo says it is very

hard to treat. I take Advair 50/500, singulair, zyrtec, Atrovent and

Alburtel in a nebulizer, and also theopylline. My case is full blown

due to the pneumonia and I'm on the maximum of medications. I was on

predisone but finished that in August and hope not to have to use

that again.

Pat

[Guest guest]

,Since you say your mother doesn't want any more treatment, I gather what you're asking is what to expect, i.e. how the disease will go. The problem is it goes differently for every CLL patient but perhaps Dr. Furman can give you an idea of what to look for.Since she's refusing treatment and has a "terminal" illness, she will most likely qualify for Hospice Care. In most states, there is an at-home alternative, where Hospice workers will come regularly to the home as long as someone else is present. They could be a great help to your sister -- assisting with daily activities like bathing and just helping to keep her comfortable while at home. There are also hospice units in most large hospitals or there may be a hospice facility nearby. Most of these are quite good, with a caring staff.You might also call her physician and ask if he/she can write a "prescription" or referral for Visiting Nurse Services. They can keep an eye on your mother's overall state without her having to go out a lot.I'd suggest calling VNS first and see what they say. They can guide you best.-Ellen D.On Dec 28, 2009, at 6:54 PM, G wrote:

My name is , My mom has CLL, she will be 84 Jan 2nd.

She has done the Rituxan (sp) off and on for a few years. She no longer wishes to do any more treatments. My dad passed in March, and mom did really good considering they were married 62 1/2 yrs. She was 87 pounds when he passed, and has gained some weight, she is at 105lbs. She has given up driving on her own, and has moved in with my sister. There are days she can barly get out of bed, and other days she has energy.

I am wondering what to expect, if anyone has any input.

Her White cell count is at 235,000. What happens now, she is going downhill.

Thanks!

[Guest guest]

Sorry, . I wanted to second what said also about depression. VNS can definitely do an assessment of that -- it's not very difficult. They can also be the ones to recommend your mother to a psychiatrist or at least urge her to go to her doctor about it.-EllenOn Dec 28, 2009, at 6:54 PM, G wrote:

My name is , My mom has CLL, she will be 84 Jan 2nd.

She has done the Rituxan (sp) off and on for a few years. She no longer wishes to do any more treatments. My dad passed in March, and mom did really good considering they were married 62 1/2 yrs. She was 87 pounds when he passed, and has gained some weight, she is at 105lbs. She has given up driving on her own, and has moved in with my sister. There are days she can barly get out of bed, and other days she has energy.

I am wondering what to expect, if anyone has any input.

Her White cell count is at 235,000. What happens now, she is going downhill.

Thanks!

[Guest guest]

,

Whether to discontinue treatment is a very complicated and difficult issue,

especially in your mother's case because she really has not been treated. It is

important to draw a distinction between someone who has received many therapies

and some who has not.

The first question is always whether depression, either in general or over the

loss of a spouse, is factoring into the decision to not move forward with

treatment.

Second, it is important to consider what are the toxicities, or better termed

" intolerabilities " as I like to call them of treatment. In short, will

treatment offer her benefits in quality and quantity of life with minimal impact

upon her current quality of life. Given the relatively untreated nature of her

disease, there are many things that could be done to control her disease and

perhaps help her feel better. If her hemoglobin is low, improving that through

treatment will help her feel better. Sometimes, just controlling the CLL will

relieve " B symptoms " and make people feel better.

While I do believe hospice and considerations of end of life care are important,

it is also important to make these considerations based upon the right

information.

Rick Furman, MD

>

> My name is , My mom has CLL, she will be 84 Jan 2nd.

> She has done the Rituxan (sp) off and on for a few years. She no longer wishes

to do any more treatments. My dad passed in March, and mom did really good

considering they were married 62 1/2 yrs. She was 87 pounds when he passed, and

has gained some weight, she is at 105lbs. She has given up driving on her own,

and has moved in with my sister. There are days she can barly get out of bed,

and other days she has energy.

> I am wondering what to expect, if anyone has any input.

> Her White cell count is at 235,000. What happens now, she is going downhill.

> Thanks!

>

>