Re: Cytoxan for the rest of my life????

[Guest guest]

Hi gang. I've been bouncing around between denial and anger for months. At my last Cytoxan treatment I was told they want to keep me on the iv treatments every 2 months for the rest of my life. I asked about other treatments and the docs told me I had tried other treatments and hadn't done well on them. If I was given any other treatment besides Cytoxan I was never told about it. I tried to get info from the nurses about when this other treatment supposedly was given and none called me back. I called about 5 times each doctor's office. I always tell my mother, sister, friends and strangers on the street(LOL if they'll stand still long enough) about my treatments and nobody remembers anything but Cytoxan. My mother keeps excellent notes on her medical visits and all the rest of the family and she has nothing written down. Where do I go from here? Hurry I have another appt Thursday and I don't want to lose

my temper and blow up. They might put me in the psych ward for decking the docs! LOL Neither doctor had my chart in their hand when they gave me the bogus info and one doctor told me she had 4 patients with the same name as mine. My neurologist won't change my treatment until the other doctor "RELEASES" me. What does that mean? I also had the sleep apnea test done and my oxygen drops below 90 while I am sleeping. Now they say I need a lung doctor.........The fun never ends with this disease does it? I thought sarc was more of a remitting/relapsing disease but I am just progressing downhill. Or could that be the Cytoxan? I never thought I'd wish for MS! I also had blood drawn and some component of the iron in my blood is low. Fernsomething or other......Sorry to be such a bummer tonight. Hope everyone is feeling as well as we can feel with this crud. It's off to bed for me. Good night

all.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

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[Guest guest]

Hi gang. I've been bouncing around between denial and anger for months. At my last Cytoxan treatment I was told they want to keep me on the iv treatments every 2 months for the rest of my life. I asked about other treatments and the docs told me I had tried other treatments and hadn't done well on them. If I was given any other treatment besides Cytoxan I was never told about it. I tried to get info from the nurses about when this other treatment supposedly was given and none called me back. I called about 5 times each doctor's office. I always tell my mother, sister, friends and strangers on the street(LOL if they'll stand still long enough) about my treatments and nobody remembers anything but Cytoxan. My mother keeps excellent notes on her medical visits and all the rest of the family and she has nothing written down. Where do I go from here? Hurry I have another appt Thursday and I don't want to lose

my temper and blow up. They might put me in the psych ward for decking the docs! LOL Neither doctor had my chart in their hand when they gave me the bogus info and one doctor told me she had 4 patients with the same name as mine. My neurologist won't change my treatment until the other doctor "RELEASES" me. What does that mean? I also had the sleep apnea test done and my oxygen drops below 90 while I am sleeping. Now they say I need a lung doctor.........The fun never ends with this disease does it? I thought sarc was more of a remitting/relapsing disease but I am just progressing downhill. Or could that be the Cytoxan? I never thought I'd wish for MS! I also had blood drawn and some component of the iron in my blood is low. Fernsomething or other......Sorry to be such a bummer tonight. Hope everyone is feeling as well as we can feel with this crud. It's off to bed for me. Good night

all.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

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[Guest guest]

Hi .....How frustrating! With all those calls to the drs and no replies from the nurses, it sounds like they screwed up somewhere along the line. Since they have others with your same name, could they have put your info on somebody else's chart? That was just a thought on my part. Believe me, I have been through so many drs with no information about me or not even reading my chart before seeing me. Or they don't even remember me from the last visit when the chart is right in front of them and then they ask "So what are you here for today?" Grrr..... And also, the drs and nurses sometimes make mistakes!, as you know. Hope you get across to them at that appt. Good luck.

Debbie T.

Co-Moderator

Re: Cytoxan for the rest of my life????

Hi gang. I've been bouncing around between denial and anger for months. At my last Cytoxan treatment I was told they want to keep me on the iv treatments every 2 months for the rest of my life. I asked about other treatments and the docs told me I had tried other treatments and hadn't done well on them. If I was given any other treatment besides Cytoxan I was never told about it. I tried to get info from the nurses about when this other treatment supposedly was given and none called me back. I called about 5 times each doctor's office. I always tell my mother, sister, friends and strangers on the street(LOL if they'll stand still long enough) about my treatments and nobody remembers anything but Cytoxan. My mother keeps excellent notes on her medical visits and all the rest of the family and she has nothing written down. Where do I go from here? Hurry I have another appt Thursday and

I don't want to lose my temper and blow up. They might put me in the psych ward for decking the docs! LOL Neither doctor had my chart in their hand when they gave me the bogus info and one doctor told me she had 4 patients with the same name as mine. My neurologist won't change my treatment until the other doctor "RELEASES" me. What does that mean? I also had the sleep apnea test done and my oxygen drops below 90 while I am sleeping. Now they say I need a lung doctor.........The fun never ends with this disease does it? I thought sarc was more of a remitting/relapsing disease but I am just progressing downhill. Or could that be the Cytoxan? I never thought I'd wish for MS! I also had blood drawn and some component of the iron in my blood is low. Fernsomething or other......Sorry to be such a bummer tonight. Hope everyone is feeling as well as we can feel with this crud. It's off

to bed for me. Good night all.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi .....How frustrating! With all those calls to the drs and no replies from the nurses, it sounds like they screwed up somewhere along the line. Since they have others with your same name, could they have put your info on somebody else's chart? That was just a thought on my part. Believe me, I have been through so many drs with no information about me or not even reading my chart before seeing me. Or they don't even remember me from the last visit when the chart is right in front of them and then they ask "So what are you here for today?" Grrr..... And also, the drs and nurses sometimes make mistakes!, as you know. Hope you get across to them at that appt. Good luck.

Debbie T.

Co-Moderator

Re: Cytoxan for the rest of my life????

Hi gang. I've been bouncing around between denial and anger for months. At my last Cytoxan treatment I was told they want to keep me on the iv treatments every 2 months for the rest of my life. I asked about other treatments and the docs told me I had tried other treatments and hadn't done well on them. If I was given any other treatment besides Cytoxan I was never told about it. I tried to get info from the nurses about when this other treatment supposedly was given and none called me back. I called about 5 times each doctor's office. I always tell my mother, sister, friends and strangers on the street(LOL if they'll stand still long enough) about my treatments and nobody remembers anything but Cytoxan. My mother keeps excellent notes on her medical visits and all the rest of the family and she has nothing written down. Where do I go from here? Hurry I have another appt Thursday and

I don't want to lose my temper and blow up. They might put me in the psych ward for decking the docs! LOL Neither doctor had my chart in their hand when they gave me the bogus info and one doctor told me she had 4 patients with the same name as mine. My neurologist won't change my treatment until the other doctor "RELEASES" me. What does that mean? I also had the sleep apnea test done and my oxygen drops below 90 while I am sleeping. Now they say I need a lung doctor.........The fun never ends with this disease does it? I thought sarc was more of a remitting/relapsing disease but I am just progressing downhill. Or could that be the Cytoxan? I never thought I'd wish for MS! I also had blood drawn and some component of the iron in my blood is low. Fernsomething or other......Sorry to be such a bummer tonight. Hope everyone is feeling as well as we can feel with this crud. It's off

to bed for me. Good night all.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

At my last Cytoxan treatment I was told they want to keep me on the iv treatments every 2 months for the rest of my life. I asked about other treatments and the docs told me I had tried other treatments and hadn't done well on them. If I was given any other treatment besides Cytoxan I was never told about it.

--Debbie is right, they have you mixed up with another of the 's with the same name.

First thing I would do is make sure that your info is not in one of the others patient's chart. REQUEST A COPY OF YOUR RECORDS-- AND THEN GO THRU IT TO SEE IF YOU HAVE SOMEONE ELSES INFO IN YOUR CHART. IF SO -- CALL THEM ON THE CARPET.

MAKE THEM MATCH THE BIRTHDATE-- WE ALWAYS WOULD PUT THE BIRTHDATE ON THE FRONT OF THE CHART WITH MARKS-A-LOT IN HUGE NUMBERS AND PUT A RED STICKER ON THE CHART THAT WAS A FLAG TO ALERT MEDICAL RECORDS THAT THERE WERE MULTIPLE PATIENTS WITH THE SAME NAME.

THEY CAN ALSO PUT YOUR FIRST AND MIDDLE NAME ON THE CHART-- AND MAKE SURE WHEN TESTS OR LABS ARE ORDERED, THAT THEY ALSO PUT YOUR BIRTHDATE ON THE TEST SLIP, OR AGAIN- USE THE MIDDLE NAME ALSO!

As far as being on cytoxan for the rest of your life-- did it help? If so, it may be that this is the one that will work for you. If it didn't seem to help, then trying the Biologicals may be the next avenue you want to persue. Enbrel, Humira, Remicade and there is a new one, are all choices.

Have you been on prednisone? What about Methotrexate or Plaquenil? Arava is another DMARD that some people can handle. Imuran is also a choice. Go to www.arthritis.org and pull up last years drug guide. It is broken down in groups, anti-inflammatorys, DMARDS, Biologicals, PainMeds, etc. It is an absolute necessity for you to understand what meds are out there-- and Rheumi's are great to handle this.

Sarcoidosis is not a remitting/relapsing disease--- at least not for us. We have CHRONIC PROGRESSIVE SARCOIDOSIS.

We are the 20% that need lifetime immunosuppressants. Whenever you start one and go off of it, your immune system bounces back, and it still thinks it has to attack healthy tissue, so you can actually end up with more systems involved than what you had when you first started therapy.

The goal is to stop the PROGRESSION, or at least slow it down.

I hope this helps, and have the MD"s office REALLY CHECK OUT THE OTHER LINDA'S CHARTS-- THIS IS TOO IMPORTANT FOR THEM TO SCREW UP.

FYI-- I HAD MY DOCS SAY I WAS CURED-- BUT THE LABS WERE FOR A GENTLEMAN-- COMPLETE WITH A PSA TEST. HMM, I MAY BE A BIT 'OFF' BECAUSE OF THE SARC-- BUT I'M SURE I DON'T HAVE A PROSTATE!

Hugs,

Tracie

NS Co-owner/moderatorStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Just wanted to let you know that everythig in the messages you

received are very important to do.

When I worked in the OR the Chief of Surgery's wife was having a

hysterectomy. They had typed and cross matched her for blood.

When they hung the blood three people checked all the info to be sure

it was correct, that was our usual policy. About a few minutes of her

starting the blood the surgeon said what going on she's bleeding from

everywhere. Turns out there had been a lab error and the blood was

not for her but another person with the same name. Fortunately she

lived, we were all sick, cuz she was such a nice person, This is

something I will never forget

Judy in PA

-- In Neurosarcoidosis , tiodaat@... wrote:

>

>

> At my last Cytoxan treatment I was told they want to keep me on the

iv

> treatments every 2 months for the rest of my life. I asked about

other treatments

> and the docs told me I had tried other treatments and hadn't done

well on

> them. If I was given any other treatment besides Cytoxan I was

never told about

> it.

>

>

> --Debbie is right, they have you mixed up with another of the

's

> with the same name.

> First thing I would do is make sure that your info is not in one

of the

> others patient's chart. REQUEST A COPY OF YOUR RECORDS-- AND THEN

GO THRU IT TO

> SEE IF YOU HAVE SOMEONE ELSES INFO IN YOUR CHART. IF SO -- CALL

THEM ON THE

> CARPET.

> MAKE THEM MATCH THE BIRTHDATE-- WE ALWAYS WOULD PUT THE BIRTHDATE

ON THE

> FRONT OF THE CHART WITH MARKS-A-LOT IN HUGE NUMBERS AND PUT A RED

STICKER ON THE

> CHART THAT WAS A FLAG TO ALERT MEDICAL RECORDS THAT THERE WERE

MULTIPLE

> PATIENTS WITH THE SAME NAME.

> THEY CAN ALSO PUT YOUR FIRST AND MIDDLE NAME ON THE CHART-- AND

MAKE SURE

> WHEN TESTS OR LABS ARE ORDERED, THAT THEY ALSO PUT YOUR BIRTHDATE

ON THE TEST

> SLIP, OR AGAIN- USE THE MIDDLE NAME ALSO!

> As far as being on cytoxan for the rest of your life-- did it

help? If so,

> it may be that this is the one that will work for you. If it

didn't seem to

> help, then trying the Biologicals may be the next avenue you want

to persue.

> Enbrel, Humira, Remicade and there is a new one, are all choices.

> Have you been on prednisone? What about Methotrexate or

Plaquenil? Arava

> is another DMARD that some people can handle. Imuran is also a

choice. Go to

> _www.arthritis.org_ (http://www.arthritis.org) and pull up last

years drug

> guide. It is broken down in groups, anti-inflammatorys, DMARDS,

Biologicals,

> PainMeds, etc. It is an absolute necessity for you to understand

what meds

> are out there-- and Rheumi's are great to handle this.

> Sarcoidosis is not a remitting/relapsing disease--- at least not

for us. We

> have CHRONIC PROGRESSIVE SARCOIDOSIS.

> We are the 20% that need lifetime immunosuppressants. Whenever

you start

> one and go off of it, your immune system bounces back, and it

still thinks it

> has to attack healthy tissue, so you can actually end up with more

systems

> involved than what you had when you first started therapy.

> The goal is to stop the PROGRESSION, or at least slow it down.

>

> I hope this helps, and have the MD " s office REALLY CHECK OUT THE

OTHER

> LINDA'S CHARTS-- THIS IS TOO IMPORTANT FOR THEM TO SCREW UP.

>

> FYI-- I HAD MY DOCS SAY I WAS CURED-- BUT THE LABS WERE FOR A

GENTLEMAN--

> COMPLETE WITH A PSA TEST. HMM, I MAY BE A BIT 'OFF' BECAUSE OF

THE SARC-- BUT

> I'M SURE I DON'T HAVE A PROSTATE!

>

> Hugs,

> Tracie

> NS Co-owner/moderator

>

>

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

[Guest guest]

Tracie Thanks for explaining our disease better to me. I thought maybe I was misdiagnosed or something else had ahold of me also. I guess Cytoxan for life IS better than no life! I saw the back surgeon yesterday and he said my back mri showed it had stabilized. The problem is I still have activity in the brain. I guess that means active sarcoid? I am getting another MRI Sunday of the brain (I think) or maybe brain & back? I forgot. Anyway, they are using a new way of taking the pictures. They called it with Assist? It will be FREE because I am sort of a guinea pig. It's a study to see if this type of MRI shows sarcoid better. At least that's what I think they said. I also am on Medicare and my part D isn't that good about some of the drugs it covers. I talked to some insurance companies

about a secondary insurance but as soon as I mentioned I'm on Cytoxan they tell me to call when I am finished with the chemotherapy. At least that slows down all the sale pitches for extra coverage. LOLJoin our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

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