Question about blood tests

[Guest guest]

I have had 2 blood tests over the past 7 months. The first, when I

was having pain and problems, came back positive. The second one,

when I wasn't have any problems, came back high normal. Now today

I'm having severe problems and going in the morning for testing.

My question is this...it is normal to get a negative (high normal)

when no symptoms are present and a positive when they are? They

aren't sure what I have...but I guess the pattern suggested Lupus so

I don't know. All I know is that I'm always tired. When I'm having

problems, my joints hurt so bad. Yesterday it was my neck, wrists

and ankles. Today my shoulders hurt bad too along with my neck,

wrists and ankles.

[Guest guest]

You don't say what the blood tests were for but I assume they were for Rheumatoid Factor. A strong positive test would indicate but not prove Rheumatoid Arthritis. A negative or weakly positive test doesn't really show anything. It just means that the doctors will have to keep looking for what disease you have. If you had a strong positive they would lean heavily toward RA but otherwise it could be any number of diseases including RA. Lupus and RA apparently have many similar symptoms so it sometimes takes a long time to get a definite diagnosis. Good luck and God bless.

----- Original Message -----

From:

Rheumatoid Arthritis

Sent: Wednesday, April 02, 2003 1:04 PM

Subject: Question about blood tests

I have had 2 blood tests over the past 7 months. The first, when I was having pain and problems, came back positive. The second one, when I wasn't have any problems, came back high normal. Now today I'm having severe problems and going in the morning for testing. My question is this...it is normal to get a negative (high normal) when no symptoms are present and a positive when they are? They aren't sure what I have...but I guess the pattern suggested Lupus so I don't know. All I know is that I'm always tired. When I'm having problems, my joints hurt so bad. Yesterday it was my neck, wrists and ankles. Today my shoulders hurt bad too along with my neck, wrists and ankles.

[Guest guest]

I am in my second clinical trial at MDA in Houston.

They accept the results from the blood drawn at home

in Missouri. Lab Corp. draws my blood; a courier drives

it to Memphis in the evening; it flies to K.C. overnight;

and the results are faxed to Houston in the morning.

wayne

From: earldion@... <earldion@...>Subject: Re: Question About Cycles Cc: Date: Monday, February 8, 2010, 8:25 AM

This is my first time posting to this group but I have been a member of the acor list for over 10 years. I have been participating in the Cal 101 trial for a year with very good results. Recently I moved to sunny Florida as my wife and I just retired. My Dr. at Dana Farber is insisting that in order to remain in the trial I will have to fly back to Boston monthly for blood tests. I think this is unneccessary and excessive and feel it puts me more at risk of infections from flying. Frequency of scans has gone down from every 2 months to every 3 but blood tests are still scheduled for every month. I had established a local onc in FL in hopes of having blood drawn down here and sent back to Boston but Dr. at Dana says no way.

My question to the group is has anyone ever participated in a trial remotely? I didn't think it was common practice to make trial participants fly every month?

Earl Dion age 58

Dx 1999

RFCX6 2002

HDMP + R followed by Campath 2004

R CHOP 2007

CAL 101 Feb 2009 ongoing

" never give up" Re: Fwd: Question About Cycles

The data generated for most clinical trials was done using six cycles of therapy. Using fewer cycles may or may not compromise the effectiveness of the chemotherapy. We just do not know. In theory, hitting the CLL cells when they have already been damaged with more chemotherapy (i.e. the next cycle) will help make sure the die and do not repair themselves. As most of you have heard me say, I believe in doing what has been demonstrated as beneficial by trials.The theoretical risk of early relapse and needing additional therapy would be a big negative to stopping treatment early.I am concerned about the damaged caused by chemotherapy, but this is why we are using lenalidomide plus rituximab in untreated patients and CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL without chemotherapy and associated toxicities.Rick Furman, MD>> Hi CLL friends,> > I wonder about the same issue. technically I am still in watch and worry > but i did have my tonsils out 18 months ago due to the large nodes that were > in my throat. I was snoring terribly with sleep apnea as well. I had lost > weight and was on the verge of needing my first treatment for CLL. > I was given a healthy dose of steroids for the inflammation at the time > of my tonsillectomy and guess what happened to my CLL? I felt great after. > White cell count went down to 94 from 154. That was 18 months ago.> So now as I consider future tx, Why not just consider one or two doses of > R and a steroid instead of 6 cycles? I know there's a trend towards

minimal > residual disease and it does make sense except for the damage long term. > Could it be that the smartest choice in some cases would be an approach > towards long term control rather than complete war with our invincible CLL?> I wonder even how many practitioners would even consider this approach due > to insufficient clinical trials supporting such. being 50 with hope of many > years to come, I really hope to consistently choose the smallest yet > effective hammer possible for my CLL. Cutting down the cycles in some cases > seems a smart way to go when ever possible.> wondering how much research has shown in this regard.> sincerely,> Leo> > > > ____________ _________ _________ ______> From: fch@...> Reply-to: groups (DOT) com> groups (DOT) com> Sent: 2/5/2010 2:46:28 P.M. Pacific Standard Time> Subj: Re: Question About Cycles> > > > > > Jim,> > My short response is that if your blood work warrants it, discontinue. I > have no idea of your age or disease history but I am 83 and heavily > pretreated. I started B at 70 mg/m2 and R at the usual rate and my platelets > tanked immediately. After a 2-month hiatus we resumed the B at 55mg/m2 along > with the R and WBC dove to 1.0, neuts to 0.3. Three months later WBC is up a > bit but neuts still at 0.7.> > Nodes did start to show shrinkage but are increasing in size

again. My > hem/onc thinks B is just to toxic for me and we are considering Arzerra. > Interesting that the makers of B recommend dosage of 100mg/m2 despite a European > trial that calls for 70mg/m2 as the optimal maximum dose. You can find the > abstract of the findings on CLL Topics. In essence, B worked for me, but > too well.> > Fred Hummel, 83, Arcata CA, DX 1/98 > Fludara 2000;> Fludara, Rituxan, Novantrone & Decadron 2002;> Rituxan 2004; Rituxan & Leukeran 2005, 2006;> IVIG 2007; RFC Lite 2007. Started R & B 2009.> > > In the 10 years that I have received chemotherapy for CLL, the treatments > (F, R and currently bendamustine HCl) have suggested "up to 6 cycles." I > have normally received four cycles, never six that I can recall. Last month, > I started on bendamustine therapy (100 mg/M2) on days 1 and 2 of a 28-day

> cycle. Although I just finished my second cycle yesterday, the adenopathy > that had built up in my neck has almost entirely cleared out after my first > cycle last month. My chest and abdomen were free from enlarged nodes prior > to treatment. The nausea and chills from bendamustine aren't pleasant, but > I'm more concerned about myelosuppression and other more debilitating side > effects. Based on my condition at this time, and that bendamustine is > potentially more toxic than my prior therapies, I am wondering if it would be > reasonable to discontinue the bendamustine after two cycles, as long as my > blood work warrants it. Also, is there any data available that suggests re! > ceiving fewer cycles of an agent can prolong the period of time that it will > be effective for a patient (before becoming refractory to it)?> > > > ____________

_________ _________ ______>

[Guest guest]

Thanks, this is exactly the type of information I was hoping for. I hope I hear from others as well so I can present it to my Dr.

Earl

Re: Fwd: Question About Cycles

The data generated for most clinical trials was done using six cycles of therapy. Using fewer cycles may or may not compromise the effectiveness of the chemotherapy. We just do not know. In theory, hitting the CLL cells when they have already been damaged with more chemotherapy (i.e. the next cycle) will help make sure the die and do not repair themselves. As most of you have heard me say, I believe in doing what has been demonstrated as beneficial by trials.The theoretical risk of early relapse and needing additional therapy would be a big negative to stopping treatment early.I am concerned about the damaged caused by chemotherapy, but this is why we are using lenalidomide plus rituximab in untreated patients and CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL without chemotherapy and associated toxicities.Rick Furman, MD>> Hi CLL friends,> > I wonder about the same issue. technically I am still in watch and worry > but i did have my tonsils out 18 months ago due to the large nodes that were > in my throat. I was snoring terribly with sleep apnea as well. I had lost > weight and was on the verge of needing my first treatment for CLL. > I was given a healthy dose of steroids for the inflammation at the time > of my tonsillectomy and guess what happened to my CLL? I felt great after. > White cell count went down to 94 from 154. That was 18 months ago.> So now as I consider future tx, Why not just consider one or two doses of > R and a steroid instead of 6 cycles? I know there's a trend towards minimal > residual disease and it does make sense except for the damage long term. > Could it be that the smartest choice in some cases would be an approach > towards long term control rather than complete war with our invincible CLL?> I wonder even how many practitioners would even consider this approach due > to insufficient clinical trials supporting such. being 50 with hope of many > years to come, I really hope to consistently choose the smallest yet > effective hammer possible for my CLL. Cutting down the cycles in some cases > seems a smart way to go when ever possible.> wondering how much research has shown in this regard.> sincerely,> Leo> > > > ____________ _________ _________ ______> From: fch@...> Reply-to: groups (DOT) com> groups (DOT) com> Sent: 2/5/2010 2:46:28 P.M. Pacific Standard Time> Subj: Re: Question About Cycles> > > > > > Jim,> > My short response is that if your blood work warrants it, discontinue. I > have no idea of your age or disease history but I am 83 and heavily > pretreated. I started B at 70 mg/m2 and R at the usual rate and my platelets > tanked immediately. After a 2-month hiatus we resumed the B at 55mg/m2 along > with the R and WBC dove to 1.0, neuts to 0.3. Three months later WBC is up a > bit but neuts still at 0.7.> > Nodes did start to show shrinkage but are increasing in size again. My > hem/onc thinks B is just to toxic for me and we are considering Arzerra. > Interesting that the makers of B recommend dosage of 100mg/m2 despite a European > trial that calls for 70mg/m2 as the optimal maximum dose. You can find the > abstract of the findings on CLL Topics. In essence, B worked for me, but > too well.> > Fred Hummel, 83, Arcata CA, DX 1/98 > Fludara 2000;> Fludara, Rituxan, Novantrone & Decadron 2002;> Rituxan 2004; Rituxan & Leukeran 2005, 2006;> IVIG 2007; RFC Lite 2007. Started R & B 2009.> > > In the 10 years that I have received chemotherapy for CLL, the treatments > (F, R and currently bendamustine HCl) have suggested "up to 6 cycles." I > have normally received four cycles, never six that I can recall. Last month, > I started on bendamustine therapy (100 mg/M2) on days 1 and 2 of a 28-day > cycle. Although I just finished my second cycle yesterday, the adenopathy > that had built up in my neck has almost entirely cleared out after my first > cycle last month. My chest and abdomen were free from enlarged nodes prior > to treatment. The nausea and chills from bendamustine aren't pleasant, but > I'm more concerned about myelosuppression and other more debilitating side > effects. Based on my condition at this time, and that bendamustine is > potentially more toxic than my prior therapies, I am wondering if it would be > reasonable to discontinue the bendamustine after two cycles, as long as my > blood work warrants it. Also, is there any data available that suggests re! > ceiving fewer cycles of an agent can prolong the period of time that it will > be effective for a patient (before becoming refractory to it)?> > > > ____________ _________ _________ ______>