WONDERFUL!!! - Lori

[Guest guest]

Lori,

So nice to hear you had a wonderful time, pampering oneself is always a good

thing. I went away to a health farm a couple of weeks ago, and the massages,

walks and tranquillity of the place was wonderful and refreshing.

You also said:

" I also have had Chlorabucil, 18 pills a day for 3 days, 3 weeks off then

again for 6 months. It improved my blood and bone marrow, but not my lymph

nodes. They stayed just as swollen and are now bigger than they were. Did

you have swollen lymph nodes? "

I have lymph nodes but they do not bother me. You said you had 18 pills a

day, I guess they were of 2 mg. each, doing a calculation that was 324 pills

over 6 months.

I have had 5 weeks of Chlorambucil with 3 or 4 weeks gaps and will have

another week starting tomorrow, that will make 42 pills in 4 months.

My counts are almost normal and I had no side effects at all. I am trying to

understand why doctors prescribe the larger doses without trying the low

ones first.

When I first spoke to my doctor about the low doses I remember her saying

" then you do not mind being a guinea pig " . I am very pleased my case is

working out fine as that might make her use the same approach to others.

Must go to bed now, good night

Chonette

> Message: 5

> Date: Mon, 14 Mar 2005 10:39:40 -0700

> From: " Lori Dobbins " <loridobbins@...>

> Subject: Re: breathlessness - Lori

>

> Hi Kurt and Anne,

> I just got back from a cancer retreat. It was WONDERFUL!!! Every year

the American Cancer Society puts this on. We went up to northern Arizona.

The weather was great. We had massages, support, look good and feel good,

talk on new cancer treatments, stuff like that. It was such a nice weekend.

I met a lot of ladies that I'll be friends with for years to come. I

actually met two other CLL'ers! I've never met another one in person

before. They both seem to be the, what I call, periphial blood dumpers.

Neither one had swollen lymph nodes. One did RFC and has been in remission

for nearly 3 years. The other had colon cancer years before and just found

out about her CLL. Neither one was dx with SLL as well. Were you? I also

have had Chlorabucil, 18 pills a day for 3 days, 3 weeks off then again for

6 months. It improved my blood and bone marrow, but not my lymph nodes.

They stayed just as swollen and are now bigger than they were. Did you have

swollen lymph nodes?

>

> Any way, I looked at my January blood counts. My Hgb was 13.0. I will

get my most recent copy. I think I'll just go down there. I did get the

name of 3 other doctors in my area that I may look into. Thanks, Anne for

the other suggestion. Virginia Piper came up a lot at my retreat. Wonder

if she'd see me since I've had this awhile now. I've never had Retuxan or

Fludara though. Maybe she would. As far as the Pulmonologist I think I may

wait awhile and see how I do. It's not really bad and when I was at 6000'

this weekend, I did fine. I'll see what my blood counts are first. But,

thanks for the info.

> Have a great day everyone!

> Lori

[Guest guest]

I don't know why some onc give higher doses than others. My onc is known as

an aggressive onc though. At the time I was 237 pounds. I'm now down to

204. That was by working out and watching my eating. Not because of the

cancer. I actually gained weight when I was dx.

Re: breathlessness - Lori

>>

>> Hi Kurt and Anne,

>> I just got back from a cancer retreat. It was WONDERFUL!!! Every year

> the American Cancer Society puts this on. We went up to northern Arizona.

> The weather was great. We had massages, support, look good and feel good,

> talk on new cancer treatments, stuff like that. It was such a nice

> weekend.

> I met a lot of ladies that I'll be friends with for years to come. I

> actually met two other CLL'ers! I've never met another one in person

> before. They both seem to be the, what I call, periphial blood dumpers.

> Neither one had swollen lymph nodes. One did RFC and has been in

> remission

> for nearly 3 years. The other had colon cancer years before and just

> found

> out about her CLL. Neither one was dx with SLL as well. Were you? I

> also

> have had Chlorabucil, 18 pills a day for 3 days, 3 weeks off then again

> for

> 6 months. It improved my blood and bone marrow, but not my lymph nodes.

> They stayed just as swollen and are now bigger than they were. Did you

> have

> swollen lymph nodes?

>>

>> Any way, I looked at my January blood counts. My Hgb was 13.0. I will

> get my most recent copy. I think I'll just go down there. I did get the

> name of 3 other doctors in my area that I may look into. Thanks, Anne for

> the other suggestion. Virginia Piper came up a lot at my retreat. Wonder

> if she'd see me since I've had this awhile now. I've never had Retuxan or

> Fludara though. Maybe she would. As far as the Pulmonologist I think I

> may

> wait awhile and see how I do. It's not really bad and when I was at 6000'

> this weekend, I did fine. I'll see what my blood counts are first. But,

> thanks for the info.

>> Have a great day everyone!

>> Lori

>

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