Re: New on here---sll/cll

[Guest guest]

I was diagnosed with stage IV SLL in 2002 at age 68 (female). Sounds like you

are living healthier than I was - although I was walking up to five miles

several times a week, felt absolutely wonderful and was working on getting to a

better weight. I, too, rely on God for my strength and hope.

I have a local doctor who works with my major doctor at MD Cancer Clinic

in Houston. He agreed that I could try a vaccine clinical trial to begin with,

so I did that for four months until tests showed an increase in node size in an

area that he felt could compromise a kidney. Then he let me try Rituxan once a

week for four weeks every six months. I did three rounds - the protocol is for

four - and tests showed that the disease was increasing, so I had to try

something else. I really did not want to go the chemo route, but thought maybe

I'd be best off doing that and getting the disease back to really minimal so

some other less toxic treatment would have a chance to completely knock it back.

So I did six months of Rituxan plus Fludarabine and Cytoxin - (three days out of

every month). The Houston doctor said they had had good results with this. It

was a relatively easy regimen - no hair loss, no real nausea (gave me something

to prevent that), continued with my regular activities - except I GAINED weight!

Finished the chemo at the end of March and have been in complete remission since

then. My next checkup in Houston is this week, and I expect to get a good

report.

Having given you all of this information, I would hope that you will be watching

and waiting for years! But I also hope that you will find out all you can about

possible treatments for SLL in case you need them. When I asked my Houston

Doctor about a chemo I had read about on this site, he said it was sometimes

used for CLL but not SLL - even though some doctors apparently think they are

the same disease. The site: www.clltopics.org is very informative, but it

does focus on CLL (obviously!). I, too, am looking for more information

specific to SLL. Maybe, for both of us, we will not need any treatment at all

for years, and if we ever do there will be something especially for SLL that has

been developed! :-) I am trying to stay away from sweets (although sometimes I

just forget that I shouldn't be eating them!) and eating properly - although not

to the extent that you are. I have an idea that you will be healthy enough for

your own body to keep the disease under control. That's all I want to do -

control it! Anyway, God bless you in your journey. If you find out anything

helpful about SLL, please share it on this site.

Oh, yes. There is a doctor in Israel who is using extracted lymphocytes from

any donor, treating them in a lab, giving them to lymphoma patients and getting

good results. Amazingly, he answers emails!!! He would need at least a

detailed medical report including information on the number of brothers and

sisters, pathology reports, CTs, etc. He says " Most of our methods in protocols

currently in use are based on the use of the immune system to fight off disease,

using either foreign immune system cells activated to become cancer killer

cells, or using vaccines in attempt to force an immune response by patient's own

immune system against cancer cells resistant to all available anti-cancer

modalities. " They also use antibodies (like Rituxan) for targeted immunotherapy

vs. residual tumor cells escaping chemo. You would have to go to Jerusalem for

treatment - a route I cannot take because of my husband's health. But his email

is: slavin@... He is a doctor at Hadassah hospital where Sharon

is being treated. I also have another email address for him:

slavin@...

I personally feel that vaccines that help our own bodies do what they are

supposed to do will be the future successful treatment.

New on here---sll/cll

Hello everyone,

Dx 8/02 with sll/cll stage IV (small incidence in bone marrow). Doing

well. Watch & Wait. Feeling great. See doctor tomorrow for check-up

after 6 months. 62 yr.old female who leans on God for everything.

Into alot of exercise,juicing,nutrition,green barley,strict diet and

am working part time.

Just want to connect with people with same diagnosis. There are alot

of cll's but according to LLS person I talked to--sll is rare and I

haven't found one yet. Looking for any info or links you would know

of overseas work being done or ANYTHING. From a quick overview,

sounds like many of you have been on or on treatment. Just want to

learn and listen. Thanks!!!

[Guest guest]

Bettie, Thanks SO much for answering right away. I am getting ready for bed

right now so will not have a long answer but I just want you to know it means so

much to me to hear from you. Will tell you more tomorrow. The info about the

Israel doctor I had never heard before and will pursue it for info reasons. A

trip to Israel I do not see in the future----unless God wants it. :-) Thanks

also for the treatment info. This all helps.

Will write you more tomorrow about what my fight has been like and let you

know my results at the oncologist/hemotologist. God bless.

bettie grant <bettiejgrant@...> wrote:

I was diagnosed with stage IV SLL in 2002 at age 68 (female). Sounds like you

are living healthier than I was - although I was walking up to five miles

several times a week, felt absolutely wonderful and was working on getting to a

better weight. I, too, rely on God for my strength and hope.

I have a local doctor who works with my major doctor at MD Cancer Clinic

in Houston. He agreed that I could try a vaccine clinical trial to begin with,

so I did that for four months until tests showed an increase in node size in an

area that he felt could compromise a kidney. Then he let me try Rituxan once a

week for four weeks every six months. I did three rounds - the protocol is for

four - and tests showed that the disease was increasing, so I had to try

something else. I really did not want to go the chemo route, but thought maybe

I'd be best off doing that and getting the disease back to really minimal so

some other less toxic treatment would have a chance to completely knock it back.

So I did six months of Rituxan plus Fludarabine and Cytoxin - (three days out of

every month). The Houston doctor said they had had good results with this. It

was a relatively easy regimen - no hair loss, no real nausea (gave me something

to prevent that), continued with my regular

activities - except I GAINED weight! Finished the chemo at the end of March

and have been in complete remission since then. My next checkup in Houston is

this week, and I expect to get a good report.

Having given you all of this information, I would hope that you will be watching

and waiting for years! But I also hope that you will find out all you can about

possible treatments for SLL in case you need them. When I asked my Houston

Doctor about a chemo I had read about on this site, he said it was sometimes

used for CLL but not SLL - even though some doctors apparently think they are

the same disease. The site: www.clltopics.org is very informative, but it

does focus on CLL (obviously!). I, too, am looking for more information

specific to SLL. Maybe, for both of us, we will not need any treatment at all

for years, and if we ever do there will be something especially for SLL that has

been developed! :-) I am trying to stay away from sweets (although sometimes I

just forget that I shouldn't be eating them!) and eating properly - although not

to the extent that you are. I have an idea that you will be healthy enough for

your own body to keep the disease under control.

That's all I want to do - control it! Anyway, God bless you in your journey.

If you find out anything helpful about SLL, please share it on this site.

Oh, yes. There is a doctor in Israel who is using extracted lymphocytes from

any donor, treating them in a lab, giving them to lymphoma patients and getting

good results. Amazingly, he answers emails!!! He would need at least a

detailed medical report including information on the number of brothers and

sisters, pathology reports, CTs, etc. He says " Most of our methods in protocols

currently in use are based on the use of the immune system to fight off disease,

using either foreign immune system cells activated to become cancer killer

cells, or using vaccines in attempt to force an immune response by patient's own

immune system against cancer cells resistant to all available anti-cancer

modalities. " They also use antibodies (like Rituxan) for targeted immunotherapy

vs. residual tumor cells escaping chemo. You would have to go to Jerusalem for

treatment - a route I cannot take because of my husband's health. But his email

is: slavin@... He is a doctor at Hadassah

hospital where Sharon is being treated. I also have another email address for

him: slavin@...

I personally feel that vaccines that help our own bodies do what they are

supposed to do will be the future successful treatment.

New on here---sll/cll

Hello everyone,

Dx 8/02 with sll/cll stage IV (small incidence in bone marrow). Doing

well. Watch & Wait. Feeling great. See doctor tomorrow for check-up

after 6 months. 62 yr.old female who leans on God for everything.

Into alot of exercise,juicing,nutrition,green barley,strict diet and

am working part time.

Just want to connect with people with same diagnosis. There are alot

of cll's but according to LLS person I talked to--sll is rare and I

haven't found one yet. Looking for any info or links you would know

of overseas work being done or ANYTHING. From a quick overview,

sounds like many of you have been on or on treatment. Just want to

learn and listen. Thanks!!!

[Guest guest]

Hi. Just wanted you to know there are more of us with SLL. I was diagnosed in

2001 at 55. I am at watch and wait. My nodes have slowly been getting larger

but have not been a problem. My white count has been getting higher also but

also not a problem yet. I've always been very active and work out at a health

club. I've always been thin but I've always tried to eat healthy. After

reading this groups info I am staying off of sweets. Haven't had any since Oct.

1st. I haven't felt any different, but my doctor isn't going to like the fact

that I'm losing weight. I see her in 2 months.

Good luck to all. Arlene

lbakerishere <lbakerishere@...> wrote:

Hello everyone,

Dx 8/02 with sll/cll stage IV (small incidence in bone marrow). Doing

well. Watch & Wait. Feeling great. See doctor tomorrow for check-up

after 6 months. 62 yr.old female who leans on God for everything.

Into alot of exercise,juicing,nutrition,green barley,strict diet and

am working part time.

Just want to connect with people with same diagnosis. There are alot

of cll's but according to LLS person I talked to--sll is rare and I

haven't found one yet. Looking for any info or links you would know

of overseas work being done or ANYTHING. From a quick overview,

sounds like many of you have been on or on treatment. Just want to

learn and listen. Thanks!!!

[Guest guest]

question for the group... if you have stage 4 cll and the lymph nodes,

especially on the neck, are very enlarged, at what point while undergoing chemo

do

you see a change in the size of the enlarged nodes? Hubby was diagnosed

stage 4 in November has had two rounds of chemo and they are still extremely

enlarged. I wondered if we'd see changes and if so, when. THANKS to all who

respond.

[Guest guest]

Arlene.

I agree with --SLL/CLL are the almost the same and treated the same. This

is my diagnosis (most recent at MD ). I was evaluated there in Dec 05

and have numerous enlarged nodes in the body cavity. Treatment recommendation

was

W/W and have it checked every 3 months. I had RF in 2002 when I was diagnosed

and was " clear " until Sept 2005.

Welcome to the board.

Gordon Kaz, Mi

Arlene Diederich <arlenediederich@...> wrote:

Hi. Just wanted you to know there are more of us with SLL. I was diagnosed in

2001 at 55. I am at watch and wait. My nodes have slowly been getting larger but

have not been a problem. My white count has been getting higher also but also

not a problem yet. I've always been very active and work out at a health club.

I've always been thin but I've always tried to eat healthy. After reading this

groups info I am staying off of sweets. Haven't had any since Oct. 1st. I

haven't felt any different, but my doctor isn't going to like the fact that I'm

losing weight. I see her in 2 months.

Good luck to all. Arlene

lbakerishere wrote:

Hello everyone,

Dx 8/02 with sll/cll stage IV (small incidence in bone marrow). Doing

well. Watch & Wait. Feeling great. See doctor tomorrow for check-up

after 6 months. 62 yr.old female who leans on God for everything.

Into alot of exercise,juicing,nutrition,green barley,strict diet and

am working part time.

Just want to connect with people with same diagnosis. There are alot

of cll's but according to LLS person I talked to--sll is rare and I

haven't found one yet. Looking for any info or links you would know

of overseas work being done or ANYTHING. From a quick overview,

sounds like many of you have been on or on treatment. Just want to

learn and listen. Thanks!!!

[Guest guest]

Help us to understand the type of Chemo your husband is having, when was he

diagnosed, and were is he being treated. Did he have a second opinion?

Our hope and prayers are with you

MyELLM@... wrote:

question for the group... if you have stage 4 cll and the lymph nodes,

especially on the neck, are very enlarged, at what point while undergoing chemo

do

you see a change in the size of the enlarged nodes? Hubby was diagnosed

stage 4 in November has had two rounds of chemo and they are still extremely

enlarged. I wondered if we'd see changes and if so, when. THANKS to all who

respond.

[Guest guest]

In a message dated 1/9/2006 8:47:59 P.M. Eastern Standard Time,

gj628dobler@... writes:

Help us to understand the type of Chemo your husband is having, when was he

diagnosed, and were is he being treated. Did he have a second opinion?

He was diagnosed in October as a result of his annual physical's blood

tests. He had swollen nodes on the sides of his neck about ten days prior to

this

physical. He was first diagnosed by our primary, then the primary had us go

to an oncology/hemotology group and he was put through a battery of tests (MRI,

CT Scan, PET Scan, MUGA test for the heart and bone marrow biopsy) and was

determined to be stage 4 CLL. He was in the hospital a week after the testing

was done due to his spleen being very enlarged and extremely painful. He

started chemo while hospitalized and is due for his third round of chemo next

week. I don't remember the chemo, its retuxin and something with an F and then

another one starting with a C (sorry I know I should remember it but at the

moment I can't). It's the standard chemo drugs for CLL from what I understand.

He's being treated locally at the hemo/oncology group. Thanks.

[Guest guest]

thank you Gordon, I appreciate the info and suggestions Judy

[Guest guest]

Thanks for your update on your husband. The treatment protocol is RFC which is

rituxan, fludarabine and perhaps cytoxan.

Your question was when should you see a reduction of the nodes when starting

treatment.

There is no simple answer to this. Although all on this board have/had

CLL/SLL, there are other factors in our genetic make up that will impact what

happens when we have chemo treatment. (The Fish test, beta 2microglobulin,

IgVH, ZAP 70 are tests that help determine how CLL might progress with this

treatment protocol) A source for understanding these test is www.healthtalk.com

Some have written that their nodes decreased after the first or second

treatment and others have said this protocol has not helped at all and there was

no decrease in their nodes. This is not the answer you were looking for, but

that is reality.

For me, I had RF and my nodes decreased over a 12 month period so that my CT

scans were negative in a year. I hope that you can report positive changes in

the next few months--most CLL'er have seen a reduction with this protocol.

I would suggest you search other leukemia/lymphoma web sites for information.

I like

www.clltopics.org , but a google search will give you more resources.

Others on the board can be of help to you also.

Gordon

MyELLM@... wrote:

In a message dated 1/9/2006 8:47:59 P.M. Eastern Standard Time,

gj628dobler@... writes:

Help us to understand the type of Chemo your husband is having, when was he

diagnosed, and were is he being treated. Did he have a second opinion?

He was diagnosed in October as a result of his annual physical's blood

tests. He had swollen nodes on the sides of his neck about ten days prior to

this

physical. He was first diagnosed by our primary, then the primary had us go

to an oncology/hemotology group and he was put through a battery of tests (MRI,

CT Scan, PET Scan, MUGA test for the heart and bone marrow biopsy) and was

determined to be stage 4 CLL. He was in the hospital a week after the testing

was done due to his spleen being very enlarged and extremely painful. He

started chemo while hospitalized and is due for his third round of chemo next

week. I don't remember the chemo, its retuxin and something with an F and then

another one starting with a C (sorry I know I should remember it but at the

moment I can't). It's the standard chemo drugs for CLL from what I understand.

He's being treated locally at the hemo/oncology group. Thanks.

[Guest guest]

Hi Arlene,

Well--I guess we both shall just keep working-out and reading all

the good info amongst our friends here. Such good info. Glad the

nodes are not bothering you. Has the doctor indicated to you when

treatment would want to be considered? I mean---is there a known

point symptomatically when you two will have to talk about doing

something?

Take care.

-- In SLL-CLL-edu , Arlene Diederich

<arlenediederich@y...> wrote:

>

> Hi. Just wanted you to know there are more of us with SLL. I was

diagnosed in 2001 at 55. I am at watch and wait. My nodes have

slowly been getting larger but have not been a problem. My white

count has been getting higher also but also not a problem yet. I've

always been very active and work out at a health club. I've always

been thin but I've always tried to eat healthy. After reading this

groups info I am staying off of sweets. Haven't had any since Oct.

1st. I haven't felt any different, but my doctor isn't going to like

the fact that I'm losing weight. I see her in 2 months.

> Good luck to all. Arlene

>

> lbakerishere <lbakerishere@y...> wrote:

> Hello everyone,

>

> Dx 8/02 with sll/cll stage IV (small incidence in bone marrow).

Doing

> well. Watch & Wait. Feeling great. See doctor tomorrow for check-

up

> after 6 months. 62 yr.old female who leans on God for everything.

> Into alot of exercise,juicing,nutrition,green barley,strict diet

and

> am working part time.

>

> Just want to connect with people with same diagnosis. There are

alot

> of cll's but according to LLS person I talked to--sll is rare and

I

> haven't found one yet. Looking for any info or links you would

know

> of overseas work being done or ANYTHING. From a quick overview,

> sounds like many of you have been on or on treatment. Just want

to

> learn and listen. Thanks!!!

>

>

>

>

>

>

[Guest guest]

I was diagnosed with Stage IV SLL in Aug 2000. 75 yrs old .W & W . No

treatment yet.Have progressed minimally.

See Onc at MD every six months. Between times see local Onc.

Feel wonderful. I don't plan to be treated until an organ is

affected , bulk gets unsightly, or blood counts show progression.

I'm happy with SLL; I don't want a transformation to a sinister

variety of lymphoma on relapse.

evelyn

>

> I was diagnosed with stage IV SLL in 2002 at age 68 (female).

Sounds like you are living healthier than I was - although I was

walking up to five miles several times a week, felt absolutely

wonderful and was working on getting to a better weight. I, too,

rely on God for my strength and hope.

>

> I have a local doctor who works with my major doctor at MD

Cancer Clinic in Houston. He agreed that I could try a vaccine

clinical trial to begin with, so I did that for four months until

tests showed an increase in node size in an area that he felt could

compromise a kidney. Then he let me try Rituxan once a week for

four weeks every six months. I did three rounds - the protocol is

for four - and tests showed that the disease was increasing, so I

had to try something else. I really did not want to go the chemo

route, but thought maybe I'd be best off doing that and getting the

disease back to really minimal so some other less toxic treatment

would have a chance to completely knock it back. So I did six

months of Rituxan plus Fludarabine and Cytoxin - (three days out of

every month). The Houston doctor said they had had good results

with this. It was a relatively easy regimen - no hair loss, no real

nausea (gave me something to prevent that), continued with my

regular activities - except I GAINED weight! Finished the chemo at

the end of March and have been in complete remission since then. My

next checkup in Houston is this week, and I expect to get a good

report.

>

> Having given you all of this information, I would hope that you

will be watching and waiting for years! But I also hope that you

will find out all you can about possible treatments for SLL in case

you need them. When I asked my Houston Doctor about a chemo I had

read about on this site, he said it was sometimes used for CLL but

not SLL - even though some doctors apparently think they are the

same disease. The site: www.clltopics.org is very informative,

but it does focus on CLL (obviously!). I, too, am looking for more

information specific to SLL. Maybe, for both of us, we will not

need any treatment at all for years, and if we ever do there will be

something especially for SLL that has been developed! :-) I am

trying to stay away from sweets (although sometimes I just forget

that I shouldn't be eating them!) and eating properly - although not

to the extent that you are. I have an idea that you will be healthy

enough for your own body to keep the disease under control. That's

all I want to do - control it! Anyway, God bless you in your

journey. If you find out anything helpful about SLL, please share

it on this site.

>

> Oh, yes. There is a doctor in Israel who is using extracted

lymphocytes from any donor, treating them in a lab, giving them to

lymphoma patients and getting good results. Amazingly, he answers

emails!!! He would need at least a detailed medical report

including information on the number of brothers and sisters,

pathology reports, CTs, etc. He says " Most of our methods in

protocols currently in use are based on the use of the immune system

to fight off disease, using either foreign immune system cells

activated to become cancer killer cells, or using vaccines in

attempt to force an immune response by patient's own immune system

against cancer cells resistant to all available anti-cancer

modalities. " They also use antibodies (like Rituxan) for targeted

immunotherapy vs. residual tumor cells escaping chemo. You would

have to go to Jerusalem for treatment - a route I cannot take

because of my husband's health. But his email is: slavin@c...

He is a doctor at Hadassah hospital where Sharon is being treated.

I also have another email address for him: slavin@h...

>

> I personally feel that vaccines that help our own bodies do what

they are supposed to do will be the future successful

treatment.

>

> New on here---sll/cll

>

> Hello everyone,

>

> Dx 8/02 with sll/cll stage IV (small incidence in bone marrow).

Doing

> well. Watch & Wait. Feeling great. See doctor tomorrow for check-

up

> after 6 months. 62 yr.old female who leans on God for

everything.

> Into alot of exercise,juicing,nutrition,green barley,strict diet

and

> am working part time.

>

> Just want to connect with people with same diagnosis. There are

alot

> of cll's but according to LLS person I talked to--sll is rare and

I

> haven't found one yet. Looking for any info or links you would

know

> of overseas work being done or ANYTHING. From a quick overview,

> sounds like many of you have been on or on treatment. Just want

to

> learn and listen. Thanks!!!

>

>

>

>

>

>

>

[Guest guest]

Hi Arlene,

Nice hearing from you. I think we are both very fortuante that

the " snake " (that is what I call this stupid cancer) is laying

low. Prayerfully and hopefully, your white count will go back to

where it belongs. I believe the doctors look at us for awhile test-

wise etc. to see what the progression it. Thankfully, the " snake "

is behaving right now. I am doing all I can do to stay healthy and

my doctor encourages me to keep doing it even though he doesn't seem

to have a real opinion on the green barley etc. which I take. :-)

Actually, I am gathering info for possible future problems and

conversing with others who are fighting the same or similar sll/cll

is making me feel much less isolated. It is always amazing to see

the courage in others and the kindness.

I am more reassured than ever that I am with a good doctor by

reading and talking to people on this site.

Hope you are having a great day.

- In SLL-CLL-edu , Arlene Diederich

<arlenediederich@y...> wrote:

>

> Hi ,

> My doctor is watching for a dramatic change rather than a

gradual one. I haven't had a cat scan in about 2 years--just blood

tests every 6 months because there hasn't been much of a change and

also, she knows I hate having needles anywhere near me. But I had

a higher white blood count this time so I consented to a cat scan

next time. I think other people on this web site are more

knowledgeable about when to begin treatment than I am.

> Hope this helps you and you are feeling okay. Arlene

>

> lbakerishere <lbakerishere@y...> wrote:

> Hi Arlene,

> Well--I guess we both shall just keep working-out and reading all

> the good info amongst our friends here. Such good info. Glad the

> nodes are not bothering you. Has the doctor indicated to you when

> treatment would want to be considered? I mean---is there a known

> point symptomatically when you two will have to talk about doing

> something?

> Take care.

>

>

>

> -- In SLL-CLL-edu , Arlene Diederich

> <arlenediederich@y...> wrote:

> >

> > Hi. Just wanted you to know there are more of us with SLL. I

was

> diagnosed in 2001 at 55. I am at watch and wait. My nodes have

> slowly been getting larger but have not been a problem. My white

> count has been getting higher also but also not a problem yet.

I've

> always been very active and work out at a health club. I've

always

> been thin but I've always tried to eat healthy. After reading

this

> groups info I am staying off of sweets. Haven't had any since

Oct.

> 1st. I haven't felt any different, but my doctor isn't going to

like

> the fact that I'm losing weight. I see her in 2 months.

> > Good luck to all. Arlene

> >

> > lbakerishere <lbakerishere@y...> wrote:

> > Hello everyone,

> >

> > Dx 8/02 with sll/cll stage IV (small incidence in bone marrow).

> Doing

> > well. Watch & Wait. Feeling great. See doctor tomorrow for

check-

> up

> > after 6 months. 62 yr.old female who leans on God for

everything.

> > Into alot of exercise,juicing,nutrition,green barley,strict diet

> and

> > am working part time.

> >

> > Just want to connect with people with same diagnosis. There are

> alot

> > of cll's but according to LLS person I talked to--sll is rare

and

> I

> > haven't found one yet. Looking for any info or links you would

> know

> > of overseas work being done or ANYTHING. From a quick overview,

> > sounds like many of you have been on or on treatment. Just want

> to

> > learn and listen. Thanks!!!

> >

> >

> >

> >

> >

> >