Re: CLL and me

[Guest guest]

Andy,

I

haven’t posted in a while but have to respond to your note.  Good thoughts of

you I definitely have.  Your contributions to this list have been considered, constructive,

and helpful to me.  I’m sure you thought about your post before sending it, and,

in your usual way, you’re letting us know about your possibly impending fate with

dignity and grace as well.  I’ll always think of you as one of the pillars of strength

and reason on the various cll lists over the years you’ve participated.  I’m

taking this opportunity to thank you for making such a very positive

contribution to my life and those of others, but I’m also saying, “It ain’t

over ‘til it’s over,†and looking forward to having you say “Hello†for some

time yet. 

All

the best in your journey,

Karni

[Guest guest]



Thank you, Karni, for your gracious and caring words. I, too, consider your contributions to the list valuable and significant. You're always there when someone needs help and attention. God help you and may you enjoy a good life and good health for many, many years.

Andy

RE: CLL and me

Andy,

I haven’t posted in a while but have to respond to your note. Good thoughts of you I definitely have. Your contributions to this list have been considered, constructive, and helpful to me. I’m sure you thought about your post before sending it, and, in your usual way, you’re letting us know about your possibly impending fate with dignity and grace as well. I’ll always think of you as one of the pillars of strength and reason on the various cll lists over the years you’ve participated. I’m taking this opportunity to thank you for making such a very positive contribution to my life and those of others, but I’m also saying, “It ain’t over ‘til it’s over,†and looking forward to having you say “Hello†for some time yet.

All the best in your journey,

Karni

[Guest guest]

Andy, please don't give up. Get a second and third opinion. Try the

electroacupuncture protocol, what have you got to lose? It raised my HgB, RBCs

and hematocrit as well as 3 other people's. It starts working within a week or

two, only a 30 min. treatment once a week. I know you're very depressed, and I

understand that sometimes we feel like it isn't worth it, the constant

struggle. But I'll pray for you and know that others will also. Get in touch

with your spiritual side (I don't know if you go to church or synagogue, but

whatever works). Try Reiki healing, you just lay there, it's like the laying

on of hands. I've enjoyed all your posts through the years, you have a lot to

offer. I love you back.

Ellen

Gach wrote:

> Hi folks,

>

> I'm not a frequent poster, but I thought it would be appropriate to give a

> quick rundown of my condition.

>

> I was dxd in 12/2005, age 75, Rai stage 1, mixed prognostic markers

> (unmutated). For 4 1/2 years I was asymptomatic, but my lymphs kept

> increasing from 15,000 to over 200,000 and then over 3000,000. 2-3 weeks

> ago I came down with AIHA. My hemoglobine dropped to 7.7, hemocrit to 28.

> My local onc put me on prednisone, 100 mg per day and gave me blood

> transfusions (8 units the first week).

>

> Following that, there was some improvement; prednisone was tapered first to

> 60 mg and then 40 mg. Then my red blood cell count plummeted again and

> tomorrow I'll have another 2 units of blood.

>

> Since the AIHA started about two weeks ago, I lost 10-12 pounds (I wasn't

> overweight to begin with).

>

> Seeing that I'll be 80 this month and that I'm not responding well to

> therapy, I wonder if I'll make it. I don't feel bad about it, I've had a

> long life and a good one and obviously, I won't live forever. I've lived

> alone with my 3 dogs and they'll be taken care when I'm gone.

>

> So if you don't hear from me again, here it is: I wish you all the best of

> health and full enjoyment of the life left. Thank you all for the abundance

> of information and camaradeship I received from these wonderful mailing

> lists.

>

> In case you don't hear from me again, have a good thought about me and

> goodbye.

>

> Love,

>

> Andy Gach

>

>

>

[Guest guest]

Andy,

Your situation mirrors my own almost to the letter with the exception that my hemoglobin dropped from 11 to 3 in a 2 week period. Yet there are no thoughts of tomorrow not coming in my life and I hope to encourage you to think the same.

Rather than just being treated with prednisone, I was also treated with Rituximab and it is my hope that your doctor is doing the same. Like you, my AIHA returned when we took down the Prednisone, so now we're back up to a higher dose of prenisone that is working and we're phasing into cyclosporin. The idea to get off the prednisone in the next 2-3 months or so.

Since our cases mirror each others, thought that I'd tell you how we seem to be managing the situation up to now.

Absolutely no thoughts that there will be not be many more tomorrows. hang in there my friend.

Leo

In a message dated 7/16/2010 3:32:42 P.M. Pacific Daylight Time, unclewolf@... writes:

Thanks, Ellen, I'm not really depressed though a bit shook up. Could you tell me more about

electroacupuncture? I probably read about it in CLL alternative, but don't remember much.

Thanks for the prayer. Wish you, too, the best.

Andy

Re: CLL and me

Andy, please don't give up. Get a second and third opinion. Try theelectroacupuncture protocol, what have you got to lose? It raised my HgB, RBCsand hematocrit as well as 3 other people's. It starts working within a week ortwo, only a 30 min. treatment once a week. I know you're very depressed, and Iunderstand that sometimes we feel like it isn't worth it, the constantstruggle. But I'll pray for you and know that others will also. Get in touchwith your spiritual side (I don't know if you go to church or synagogue, butwhatever works). Try Reiki healing, you just lay there, it's like the layingon of hands. I've enjoyed all your posts through the years, you have a lot tooffer. I love you back.Ellen Gach wrote:> Hi folks,>> I'm not a frequent poster, but I thought it would be appropriate to give a> quick rundown of my condition.>> I was dxd in 12/2005, age 75, Rai stage 1, mixed prognostic markers> (unmutated). For 4 1/2 years I was asymptomatic, but my lymphs kept> increasing from 15,000 to over 200,000 and then over 3000,000. 2-3 weeks> ago I came down with AIHA. My hemoglobine dropped to 7.7, hemocrit to 28.> My local onc put me on prednisone, 100 mg per day and gave me blood> transfusions (8 units the first week).>> Following that, there was some improvement; prednisone was tapered first to> 60 mg and then 40 mg. Then my red blood cell count plummeted again and> tomorrow I'll have another 2 units of blood.>> Since the AIHA started about two weeks ago, I lost 10-12 pounds (I wasn't> overweight to begin with).>> Seeing that I'll be 80 this month and that I'm not responding well to> therapy, I wonder if I'll make it. I don't feel bad about it, I've had a> long life and a good one and obviously, I won't live forever. I've lived> alone with my 3 dogs and they'll be taken care when I'm gone.>> So if you don't hear from me again, here it is: I wish you all the best of> health and full enjoyment of the life left. Thank you all for the abundance> of information and camaradeship I received from these wonderful mailing> lists.>> In case you don't hear from me again, have a good thought about me and> goodbye.>> Love,>> Andy Gach>>>

[Guest guest]

Thanks, Ellen, I'm not really depressed though a bit shook up. Could you tell me more about

electroacupuncture? I probably read about it in CLL alternative, but don't remember much.

Thanks for the prayer. Wish you, too, the best.

Andy

Re: CLL and me

Andy, please don't give up. Get a second and third opinion. Try theelectroacupuncture protocol, what have you got to lose? It raised my HgB, RBCsand hematocrit as well as 3 other people's. It starts working within a week ortwo, only a 30 min. treatment once a week. I know you're very depressed, and Iunderstand that sometimes we feel like it isn't worth it, the constantstruggle. But I'll pray for you and know that others will also. Get in touchwith your spiritual side (I don't know if you go to church or synagogue, butwhatever works). Try Reiki healing, you just lay there, it's like the layingon of hands. I've enjoyed all your posts through the years, you have a lot tooffer. I love you back.Ellen Gach wrote:> Hi folks,>> I'm not a frequent poster, but I thought it would be appropriate to give a> quick rundown of my condition.>> I was dxd in 12/2005, age 75, Rai stage 1, mixed prognostic markers> (unmutated). For 4 1/2 years I was asymptomatic, but my lymphs kept> increasing from 15,000 to over 200,000 and then over 3000,000. 2-3 weeks> ago I came down with AIHA. My hemoglobine dropped to 7.7, hemocrit to 28.> My local onc put me on prednisone, 100 mg per day and gave me blood> transfusions (8 units the first week).>> Following that, there was some improvement; prednisone was tapered first to> 60 mg and then 40 mg. Then my red blood cell count plummeted again and> tomorrow I'll have another 2 units of blood.>> Since the AIHA started about two weeks ago, I lost 10-12 pounds (I wasn't> overweight to begin with).>> Seeing that I'll be 80 this month and that I'm not responding well to> therapy, I wonder if I'll make it. I don't feel bad about it, I've had a> long life and a good one and obviously, I won't live forever. I've lived> alone with my 3 dogs and they'll be taken care when I'm gone.>> So if you don't hear from me again, here it is: I wish you all the best of> health and full enjoyment of the life left. Thank you all for the abundance> of information and camaradeship I received from these wonderful mailing> lists.>> In case you don't hear from me again, have a good thought about me and> goodbye.>> Love,>> Andy Gach>>>

[Guest guest]

They just place the acupuncture needles on certain points (there are not

too many with this protocol), then hook up 4 of the needles to clips to

a machine that puts a very gentle electrical current into the point.

It's no big deal. Here is the paper that got some of us started on

this: http://www.medicalacupuncture.org/aama_marf/journal/vol15_1/vol_15_num_1_case_1.html

Also, Dr. Tian has a similar, though not identical protocol, that seems

to be working well to normalize counts.............it does take a little

time, but results should come in a month or so, just compare bloodworks.

Try to find an acupuncturist either from the medicalacupuncture.org website

or the ncaaom.org website. There are some people out there who have

less than ideal training, you want to find either an M.D. who does this

or a TCM trained acupuncturist.

Ellen

Gach wrote:

Thanks,

Ellen, I'm not really depressed though a bit shook up. Could you

tell me more aboutelectroacupuncture? I probably read

about it in CLL alternative, but don't remember much. Thanks

for the prayer. Wish you, too, the best. Andy

Re: CLL and me

Andy, please don't give up. Get a second and third opinion.

Try the

electroacupuncture protocol, what have you got to lose? It raised my

HgB, RBCs

and hematocrit as well as 3 other people's. It starts working within

a week or

two, only a 30 min. treatment once a week. I know you're very depressed,

and I

understand that sometimes we feel like it isn't worth it, the constant

struggle. But I'll pray for you and know that others will also. Get

in touch

with your spiritual side (I don't know if you go to church or synagogue,

but

whatever works). Try Reiki healing, you just lay there, it's like the

laying

on of hands. I've enjoyed all your posts through the years, you have

a lot to

offer. I love you back.

Ellen

[Guest guest]

A suggestion for those on prednisone for an extended period. Consider having a bone density scan after finishing the course of treatment. I had prednisone and Rituxan for ITP, followed by Lupron D (adjuvant therapy) for prostate cancer. Both prednisone and Lupron are known to cause bone loss. I went from a normal hip bone density to well into osteopenia, so when I had a fall (missed the last step on the stairs) a couple of months later I broke my hip, and now have an artificial hip. A good reason to taper off prednisone as soon as medically called for.

G

[Guest guest]

This is very important. Additionally, so is checking vitamin D levels. Most

people underestimate the importance of vitamin D. There are many physicians who

believe our current " normal range " is inadequate and the recommended daily

allowances need to be increased.

Rick Furman, MD

>

> A suggestion for those on prednisone for an extended period. Consider having a

bone density scan after finishing the course of treatment. I had prednisone and

Rituxan for ITP, followed by Lupron D (adjuvant therapy) for prostate cancer.

Both prednisone and Lupron are known to cause bone loss. I went from a normal

hip bone density to well into osteopenia, so when I had a fall (missed the last

step on the stairs) a couple of months later I broke my hip, and now have an

artificial hip. A good reason to taper off prednisone as soon as medically

called for.

>

> G

>