Carol G update

[Guest guest]

Hi all, I just wanted you to know to keep Carol G in your thoughts. She has

a sinus infection, bronchitis, a tender ear and is allergic to Dapsone.

Whew....Carol, you really do it good. LOL She will be back on line once the

horrendous headache is gone. She wishes you all well.

Carol, we are all keeping you in our thoughts and prayers and hoping you

recover really fast. We want you back with us.

hugs,

[Guest guest]

,

Thanks for the update! I will keep Carol in my thoughts and prayers!

Lots of love

Glenda

[Guest guest]

Hi Carol G.,

First off, sending you a big gentle hug!

I have been on Cytoxan since last August.

I have not had any serious side effects. The worst is the fatigue. The other side effect I have is hair loss.

My hair has gotten quite thin.

I cannot emphasize enough that you drink lots of water. I'm sure your Doc told you about the effect Cytoxan has on your bladder and kidneys.

I have my blood and urine checked every 4 weeks.

How much Cytoxan are you on? I take 150 mg. a day. That is the max dose for my size.

Email me if you need more info or want to talk.

Hugs,

Sandy

I started my first dose of Cytoxan pills today. I'm not going to try to deny this is freaking me out. The term "chemo" drugs has it's own problem, and the more miserable I feel the more I can see the potential problems. I won't complain too much right now, I know all the possibilities, my blessed Dr. spent 2 hours with me yesterday talking through it all, but I need support from people who know this. My family is shocked that it has come so far so quickly, and of course they can't know how it feels or what to do, except cry with me right now, and they are all males, except my dear Mom, who is being so strong for me, despite her own failing health. What's weird about it all, after three months, today was the first day I realized that when I'm talking about this, I'm talking about me. I've started crying at least 10 times today, and of course the Pred helps that too. I know I'll get through this, especially with your help, it I may never have side effects, I'm trying desperately to be positive. I would like some honest feedback about the Cytoxan, though, if you have taken it. I need to know.

It frustrates my Dr. that there has not been more research and clinical trials on this. We talked about the foundation, Dr. Buckner' s study, although he was hoping she would be doing more now for treatment,rather than cause. and Dr. Trentham. He is frustrated that he has to educate the other specialists he has to deal with for me including radiologists who didn't read my MRI thoroughly, to my Neurologist who had never heard of RP, and so on. We NEED to get this out to more medical professionals and the public. I am not able to be too active right now, but you'd better believe that I will be sending those emails when you guys pick the day for mass mailings to everybody and anybody. I'm upset enough for all of us, especially for my unborn first grandchild that I just learned of, who I don't want to ever have to even worry about this cRaP! (I'm so excited about the baby - it's the bright spot in our lives right now!!)

I will give you more as I learn more, and I hope you all do the same. I am thinking of each of you with your situations, we are so few, but we each have our special lives and each one of you hold a special place in my heart. I hope you are in control of this for yourselves, and if you feel like you're not, don't wait til it gets worse to do something about it. I'm not waiting and it's still getting the better of me. My Dr was talking to me over the weekend from his home, and he got mad at me when I told him I didn't want to disturb him at home... you know what he said? "CALL ME". You deserve a Dr like this too. If you don't have one find one now! This disease can act and destroy quickly, I, and I'm sure some of the others are proof of that.

Alright, kick me off the soapbox so can get back on...I love you and I'll be with you in my heart on Thursday.

I'll try to address each of you over the next several days, I'd like to catch up with everyone, and You all be helping me by reading what is going on as you take care of yourselves and be as happy as you can possibly be.

Thanks for listening, Carol G

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi there, Carol G.

Welcome to my world! I've been taking Cytoxan orally for 1 year and 11 days.

I'd be glad to share my experiences with you, but let me say that there will be

some changes in your life but it is not as bad as you might think.

I'm leaving this Sunday for the Mayo Clinic in Rochester. Tests begin Monday

morning at 7:15 a.m. followed by appointments with my pulmonologist,

rheumatologist and ENT Dr. I am hoping that I'll be able to reduce or totally

quit taking the Cytoxan since I'm so much better than I was a year ago. I'm

trying not to get my hopes up too much since my local doctors aren't that

optimistic. But either way, this stuff works and that's what we want, right?

I started out with 50 mg of Cytoxan a day for a week, and then each week we up'd

it another 25 mg until we reached 150 mg. After 2 months of that my white blood

count went too low and my neutrophils were off the charts, so Mayo said to lower

it to 100 since I didn't have any inflammation. 100 mg a day hasn't been too

bad. As Sandy said, the fatigue is unrelenting. So plan on lots of naps. This

is a time for you to GIVE YOUR BODY TIME TO HEAL. I usually wake up early

(thanks to the Prednisone) and exercise because that's when I have more energy.

My hair thinned out some but not too much. My hairdresser had a back-up plan

just in case I lost it all. I also started juicing because sometimes I just

didn't feel like eating but needed the nutrition. Juicing really helps with the

weight control too.

Carol, one day in early February I had a strange feeling that kind of took me by

surprise. I thought, " Whoa, what's this? I feel like myself again. " It had

taken 10 months of Cytoxan, but finally I found me again and have continued to

feel better every day.

I'm so glad you have a doctor who knows that the two of you will become good

friends now that he's treating you. My local doctors and I are on a first-name

basis. It's this simple: I have no immune system. If I start to feel bad or

think I'm catching a cold I have to call them day or night. The old me could

fight off most bugs, but the Cytoxan me can't. I don't even put it to the test.

I call or just get in the car and drive to their offices. Since my bronchitis

episode in January, I keep a full bottle of a strong antibiotic (Tequin) on hand

just in case.

Please feel free to email me direct (katdavis@...) or call me if

you'd like/need to talk (). Remember: You can do this, Carol.

You've got to be ready to cuddle that new baby, right?

Love you, my friend.

(KC)

On Wed, 17 Apr 2002 03:23:32 -0400 Carol Giordano

wrote:

Hello my dear extended family. First, I need a

group hug... Thanks, that makes me feel better already! It's 3:15 am, and as

usual I can't sleep.

 

Now, let me welcome our newest - you are

among the finest group of family members in the world, we are all here for you.

My update will hopefully answer some of your questions, but don't think you're

going to end up like me or any one of us. There is not a " typical " with this

disease, but our experiences will help you formulate your best defense and help

you know what will be right for you.  

 

I was diagnosed 3 months ago, have been on various

levels of Pred, my highest, now, is 75, over this past weekend, and will be at

60 for at least 2 weeks before I pray I can start to taper down, as I am having

all the worst possible side effects. I have been on Dapsone for over a month.

These aren't working, as I have had a major progression in disease activity over

the past few weeks brought on by a simple cold that progressed to

bronchitis/pneumonia, then proceeded to start to play havoc w/ my face, mouth,

eyes, inner ears, and is starting again in my nose and throat, basically from my

chest up. It's got me good this time!

 

My Dr. and I agree it's time for a more aggressive

approach to stop this monster while we try to determine the activity/damage and

make sure there's not something else going on here too. Originally we had

discussed adding Methotrexate, but he said it would take too long to start to

work, and we don't have that time at all. So we're skipping over the " 2nd line

defense " and going to the front line with the big guns.

 

I started my first dose of Cytoxan pills today. I'm

not going to try to deny this is freaking me out. The term " chemo " drugs has

it's own problem, and the more miserable I feel the more I can see the potential

problems. I won't complain too much right now, I know all the possibilities, my

blessed Dr. spent 2 hours with me yesterday talking through it all, but I need

support from people who know this. My family is shocked that it has come

so far so quickly, and of course they can't know how it feels or what to

do, except cry with me right now, and they are all males, except my dear Mom,

who is being so strong for me, despite her own failing health. What's weird

about it all, after three months, today was the

first day I realized that when I'm talking about this, I'm talking about me.

I've started crying at least 10 times today, and of course the Pred helps that

too. I know I'll get through this, especially with your help, it I may never

have side effects, I'm trying desperately to be positive. I would like some

honest feedback about the Cytoxan, though, if you have taken it. I need to

know.

 

It frustrates my Dr. that there has not been more

research and clinical trials on this. We talked about the foundation, Dr.

Buckner' s study, although he was hoping she would be doing more now for

treatment,rather than cause. and Dr. Trentham. He is frustrated that he has to

educate the other specialists he has to deal with for me including radiologists

who didn't read my MRI thoroughly, to my Neurologist who had never heard of RP,

and so on. We NEED to get this out to more medical professionals and the public.

I am not able to be too active right now, but you'd better believe that I will

be sending those emails when you guys pick the day for mass mailings to

everybody and anybody. I'm upset enough for all of us, especially for my unborn

first grandchild that I just learned of, who I don't want to ever have to even

worry about this cRaP! (I'm so excited about the baby - it's the bright spot in

our lives right now!!)

 

I will give you more as I learn more, and I hope

you all do the same. I am thinking of each of you with your situations, we are

so few, but we each have our special lives and each one of you hold a

special place in my heart. I hope you are in control of this for yourselves, and

if you feel like you're not, don't wait til it gets worse to do something

about it. I'm not waiting and it's still getting the better of me. My Dr was

talking to me over the weekend from his home, and he got mad at me when I

told him I didn't want to disturb him at home... you know what he said? " CALL

ME " . You deserve a Dr like this too. If you don't have one find one now! This

disease can act and destroy quickly, I, and I'm sure some of the others are

proof of that. 

 

Alright, kick me off the soapbox so can get

back on...I love you and I'll be with you in my heart on

Thursday.

I'll try to address each of you over the next

several days, I'd like to catch up with everyone, and You all be helping me by

reading what is going on as you take care of yourselves and be as happy as

you can possibly be.

 

Thanks for listening, Carol G