Re: A little worried.

[Guest guest]

Hi ,

I understand completely what you are saying and my husband I have been

struggling with the very same issues. He was dx in Sept '06 with his

counts dropping - ANC - 0.6 and we resisted him being taken off- His

Dr gave him 3 days to see if the neutrophils to come up or he would

be taken off Gleevec until a rise...and after 3 days of praying and

willing it to come up - it did - sounds unreal but came up to 2.4. We

were all amazed. Now it is declining again - down to 1.2 today...It s

a hard situation- managing the side effects or the disease. I am

waiting to see if his counts drop further or start to come back up.

Have you been sick recently? That would account for dropped counts.

How low is you ANC? How are you feeling? What about your hemoglobin?

I hope you get some answers that you need and those neutrophils jump

up nicely..

shalyn

> I've been on Gleevec since August '06 (198WBC at dx) and have been

> doing great as far as counts improving with little to no side effects.

> The problem is, my WBC and neutrophils have kept slowly dropping to

> the point that my Onc wants me to stop taking Gleevec and get back on

> the weekly CBC regimen (aka human pin cushion). Tonight is my first

> night without Gleevec.

>

> I've read lots of view points here about those with low WBC and

> neutrophils, lots of talk about NOT stopping Gleevec dosage and

> getting a shot of the neupogen. I'd like to hear from anyone who went

> through the low WBC/ANCs, what they learned, how they are doing, etc.

>

> I'm hoping this time off is a one time thing, but my logic tells me if

> Gleevec is making my counts decline now, why wouldn't it do that in

> the future when the counts come back up?

>

> Thanks in advance for your replies.

>

>

>

>

>

" Catch on fire with enthusiasm and people will come for miles to watch you

burn. " - Wesley

[Guest guest]

I came down with a nice cold (still super congested) about 2 days

after the CBC on 1/5. My counts were...

WBC 2.6 (Slowly creeping down over the last couple months)

Hemoglobin 12.5 (This has been steady for a couple months)

ANC 959

I took another CBC Friday which I haven't seen the results of. I'm

guessing a little lower on the ANC considering her decision to take me

off.

I feel decent, perhaps a little tired. Tons of sinus congestion (clear

to cloudy) and a little bit of a sinus headache which I hope doesn't

turn into a sinus infection.

Let's all keep our fingers crossed.

>

> Hi ,

>

> I understand completely what you are saying and my husband I have been

> struggling with the very same issues. He was dx in Sept '06 with his

> counts dropping - ANC - 0.6 and we resisted him being taken off- His

> Dr gave him 3 days to see if the neutrophils to come up or he would

> be taken off Gleevec until a rise...and after 3 days of praying and

> willing it to come up - it did - sounds unreal but came up to 2.4. We

> were all amazed. Now it is declining again - down to 1.2 today...It s

> a hard situation- managing the side effects or the disease. I am

> waiting to see if his counts drop further or start to come back up.

> Have you been sick recently? That would account for dropped counts.

> How low is you ANC? How are you feeling? What about your hemoglobin?

> I hope you get some answers that you need and those neutrophils jump

> up nicely..

> shalyn

>

> > I've been on Gleevec since August '06 (198WBC at dx) and have been

> > doing great as far as counts improving with little to no side effects.

> > The problem is, my WBC and neutrophils have kept slowly dropping to

> > the point that my Onc wants me to stop taking Gleevec and get back on

> > the weekly CBC regimen (aka human pin cushion). Tonight is my first

> > night without Gleevec.

> >

> > I've read lots of view points here about those with low WBC and

> > neutrophils, lots of talk about NOT stopping Gleevec dosage and

> > getting a shot of the neupogen. I'd like to hear from anyone who went

> > through the low WBC/ANCs, what they learned, how they are doing, etc.

> >

> > I'm hoping this time off is a one time thing, but my logic tells me if

> > Gleevec is making my counts decline now, why wouldn't it do that in

> > the future when the counts come back up?

> >

> > Thanks in advance for your replies.

> >

> >

> >

> >

> >

>

>

>

>

> " Catch on fire with enthusiasm and people will come for miles to

watch you

> burn. " - Wesley

>

[Guest guest]

So if I am understanding correctly, your still sick? That would

explain the continued dropping levels..I mean they drop even more when

your sick- like soldiers out to war - that's where your neutrophils

are right now. If you were not sick, then they would be higher. As far

as the cold goes- I really hope it clears..as I say to everyone when

sick - sleep , sleep , sleep- plus TONS of fluid and warm showers-

clears things. Have you considered any additional supplements? My

husband has started on this liquid stuff- supposedly it has much

better absorption that vitamins and it has a crazy amount of fruits,

veggies, vitamins, and minerals jammed in the bottle. I will let you

know if it works. His hemoglobin is also 12.5 which is hard for him -

as he is a determined athlete. From what I know - if it was a woman

with that hemoglobin, it would be not bad at all , but as a male it is

much more noticeable. I hope you do not mind but will keep you and

those counts fo yours in my prayers tonight...I hope you can get back

on the gleevec soon, and the cold goes away very soon...

Oh as well- anyone research Cold FX to ward off colds? It has worked

for many people (Don Cherry and Mark Messier swear by it) , just

curious if okay while on gleevec? Hope you feel better soon !

Shalyn

[Guest guest]

Thanks for your kind words Shalyn. If I remember correctly (from your

previous posts), your husband and I are very, very similar in age (33)

and lifestyle (extreme ativities). I workout all the time and try to

hit the motocross track at least once a week. I haven't let CML slow

me down one bit and don't intend to. You gotta live.

Does the ColdFX have echinacea? I've heard thats something to stay

away from with Gleevec. I supplement a lot. Tons of iron, vitamins,

and healthy food (thanks to my amazing wife!). Not sure if the Gleevec

is working too well or not letting the good cells grow.

I'm not real confident in my Onc at all. I need to find one that knows

CML. Her whipping out the Gleevec pamphlet to check specs on what my

levels should be does not instill my trust.

>

> So if I am understanding correctly, your still sick? That would

> explain the continued dropping levels..I mean they drop even more when

> your sick- like soldiers out to war - that's where your neutrophils

> are right now. If you were not sick, then they would be higher. As far

> as the cold goes- I really hope it clears..as I say to everyone when

> sick - sleep , sleep , sleep- plus TONS of fluid and warm showers-

> clears things. Have you considered any additional supplements? My

> husband has started on this liquid stuff- supposedly it has much

> better absorption that vitamins and it has a crazy amount of fruits,

> veggies, vitamins, and minerals jammed in the bottle. I will let you

> know if it works. His hemoglobin is also 12.5 which is hard for him -

> as he is a determined athlete. From what I know - if it was a woman

> with that hemoglobin, it would be not bad at all , but as a male it is

> much more noticeable. I hope you do not mind but will keep you and

> those counts fo yours in my prayers tonight...I hope you can get back

> on the gleevec soon, and the cold goes away very soon...

>

> Oh as well- anyone research Cold FX to ward off colds? It has worked

> for many people (Don Cherry and Mark Messier swear by it) , just

> curious if okay while on gleevec? Hope you feel better soon !

>

> Shalyn

>