neutrophils down to 0.30 week 41

[comeagain]

Got a letter from hospital today said that my neutrophils was down to 0.30 the test was done
last thursday just before shot 41, my doc dosn´t want me to cut down pegasys ( keep the full dose 185mcl) but come and take another blood draw on thursday before i take shot 42.
The hospital also told me if I get fever i shall contact them ASAP.

What I am wondering is if theres any risk of a permanent issue with low neutrophils if going down to low and in that case how low?

I have felt like **** the last week severe bone paine in upper legs knees and most in the lower legs it hurts like hell inside the bones, its a bit better today. And I´m so so tired can´t even think some times.

Last friday i started to boost my immunualsystem with protein powder that contains lots of lactoferrin could it be the reason for the bonepain, that the lactoferrin and protein somehow helps with the white bloodcell production.

ca

PS no rescue drugs are available. I also hardely got any sleep the night before the last blooddraw, could that have something to do with the extra low nr (its been low during whole of tx 0.5- 0.9 the whites has also been low 1.7)

[FlGuy]

Take two tylenol (or whatever it's called there) and stop collecting your mail.

With 41 down, rvr around week 4, increased peg and riba this time you should feel optimistic about this tx even if neutrophils cause a peg reduction. Bummer about the no resuce drugs, at least you made it through 10 months so far.  ANC bounce around a bit.  If you are committed to going the distance, no matter what, get the next cbc just before the next peg.

[portann]

Dear CA,

I recall someone posting fluctuations in ANC's in which one count went down as low as .3 before spontaneously going back up. I have no idea what percentage of hepatologists would or would not intervene but I believe that person's treating hepatologist did wait it out.

I haven't found much here specifically about bone pain but that's exactly what's driving me around the bend for the last week or two. Right out of the blue, my thigh bones and shin bones feel like they're exploding. It's not in the joints or the muscles. I've never given much thought to my bones but when this pain hits, it's like I'm standing in a butcher shop, watching a thigh bone or a shin bone in the display, except it's shattering or exploding and I just feel desperate to escape. The pain is only in the bone.  Very weird and yet my anc was 1.0 at last check, up from .9, so it's far from being as low as yours.  I can't say I've changed any of my habits - not my dietary ones.  Maybe I'm walking outdoors more than in the early months.  Tylenol does work but the darn thing takes thirty minutes to kick in and I can jump off a lot of cliffs in that time to escape the explosion. :)

I know my being awakened in the middle of the night with my shin exploding is demoralizing for me. It is not easy to understand and solve, unlike my previous side effects which I've managed pretty well. I hope someone can provide an insight into what you've been going through. I've missed your posts lately.

[comeagain]

Thank you very much for your replies my worst days almost all the time has been sundays and mondays so far and to day its clearing up little and guys it helps so much just to get a reply.

I loved that "stop collecting your mail" thats wisdom > beyond  just whats
gets me going in a positiv direction.

the paradoxman ca

[sunshine585]

I just looked at my old bldwk, as my neuts and whitecells are always low too. Before the study drug was stopped, I'd get a dose reduction if my neuts went below .4 Week 32, my neutrophils went down to .29 andwbc was 1.1 no dose reduction but repeat bldwk and I did come back up a bit.
  Hang in there friend, I know you're having a rough go of it now, but this too shall pass. I know, because when I had a very rough episode, I found this site, and you. You helped to keep me going. So now, my hand is out to you, and I'll try to pull you out of the rough stuff.
  S

[smaug48]

Sorry you are going through a rough patch.  With regard to immune boosting, you could also try drinking kefir (or at least yogurt) daily if you are not already.

Keep the faith, you'll pull through this!

smaug

[Kristina538]

I've bought some dried Shitake mushrooms from the Organics Shop and am trying them today to see if they will help my neuts rise (I've seen it work for 2 others).  

Hopefully the bloods will come back up being that close to shot day.   Will be thinking of you....

[epiphiny]

I'm one of the ones K is referring to in her post and this happened to me a couple of weeks ago.  My neuts went to .56 and I was told to take a  50% peg reduction, which I didn't do, then they tested my neuts again the day of my next shot (I left it as late as possible to get the blood drawn and still get the results through to my NP that day).  and I ate shiitake mushrooms twice a day for the week prior.  On test day my neuts had gone from .56 to 1.5.

I'm due for another test on Friday and this time I haven't been eating the 'shrooms so I'll be interested to see the outcome!  I'm a human guinea pig in my own experiment!

As for the the bone aches I've not had those coinciding with low neuts but I have experienced bone ache but not to the degree you have experienced.

You will be OK, ca, you've come so far, this is merely sent for you to prove that you will prevail!!

Sending you much strength!

Epi x

[Marcia2202]

My dear Swedish friend. You are in my prayers! I will have my St. George rooting for you, too. May your journey me made easier for you. Hugs, Marcia

[comeagain]

Thx all, for your support.

The funny thing is I´ve changed cellphone nr and forgot to give it to my nurse so she hasn´t been able to reach me until today and thats good, gave me almust a whole week without worrying ,flguys advice is right sometimes dont open your mail dont answer your phone LOL.

I´m so touched by your support I know each and everyone of you have troubles of your own still you there for me thats big bigger then big.

ca

[Isobella]

I am so sorry to hear you are having trouble.  

I have had peg reductions due to low anc (.6-.8) and started on a mushroom supplement after getting tired of eating so many shiitakes. It worked and I am finally on the full dose.

I hope you get some relief from the bone pain....now I know what the reason for it is.

Double dose of St George heading your way, bro!!!!!

Izzy

[Deb_c430]

ahh my dear  friend, no rescue drugs? sighs,    the good news is a lot of chemo Doctors don't stress to much about white blood cells,  The bone ache is so hard,  I have it a lot this tx, crazy stuff.  With or without rescue drugs it is hard.

The thing is they do repair themselves after tx, your almost there no?    Have you tried some simple things like heat?   Tub not a good idea if you have skin problems,   But helpful besides that,  

I am so sorry CA, your always in my prayers,  hugs and many prayers.

Deb

  

[jmjm530]

My neuts dropped to .32 and my docs didn't blink. Two weeks later they were up over 1 without either a dose reduction or Neupogen. Newer studies do not show an increased infection rate with SOC-induced low ANC. Personally, if your docs are not worried, then I would not worry.

-- Jim

[Deb_c430]

same here Jim, mine have bounced all over the place, stopped worrying about it, other than the aching

Deb

[Emilio44]

This close to home I would stick with the current dose.  I'm not so sure that your pain would have anything to do with your low ANC.  In July mine went down to .50 and I don't recall any sx from this.  4 weeks later back up to 1.9 so it does tend to fluctuate.  Keep yourself isolated is much as possible and away from bacteria, ie, Dr's surgeries, buses, overcrowding. So close! I hope you've won, I sense you have. Regards Emi

[Kristina538]

I also get the major shin bone, thigh bone aches.   I fill a hot water bottle and sit on it until the paracetamol kicks in.   One week it's one leg, and the next week it's the other!!
Strangely,  food sometimes helps..... mmmm, maybe I have an overactive tx/riba introspective imagination?

[JennyPenny]

I'm sorry you're having such a difficult time. Before I got on neupogen I also had moderate bone pain in my legs and back. It got worse on the neupogen. By hematologist believes that the pain is from the bone marrow expanding as it tries to build itself. This can happen without neupogen because on treatment the marrow is trying to "fix" it self.

Jim, I've seen those studies about lack of infection in hep patients with low counts. However, I was hospitalized . twice, for a total of 16 days due to infection. It is pretty scary. My advice to anyone with low ANC is to follow the procedures for infection control...no fruits or veggies, wash hands frequently and stay our of plasces where a lot of  people congregate.

It actually took me 4 months of almost daily neupogen to get my counts to a respectable 1500. And strangely enough, neulasta did not work for me.

[comeagain]

I had earlier on treatment an infection took 10 days on penicellin before it went away.
that was a real horrow experince felt like my whole head capsule was infected, the odd thing is, thats the only time during tx that my neutrophils went up to 1.6 just to go down to  0.7 the week after.

Whats so great about this forum is that I can benefit from all your advises you J P
i will listen to and be careful, jim reminded what the study had said ,helped me not to worry to much , kristina and deb gives me pratical adwises to lower my paine.
This forum is fantastic just to know that people care is awesome.

ca.

PS and of course not to forget the invaluable help from St.Georg and the bada$$twisted sisters swinging there swords although they are stucked to the wall sometimes.

[can-do-man]

Mine also got as low as 30 then went back up again, kinda bounced up and down like a yo yo ya know? Doc never was worried though, HUM maybe he didn't care.

Weird though how some get an infection and some don't, i spend almost every saturday in a bowling ally, my grandkids were in a league. Never caught anything but a headach being around all those snot noses.

Hang in there guy it will soon be over and all this will just be a bad dream. Best always.

can... heading to the can

[Deb_c430]

I don't think it isn't that they don't care, it just happens to a lot of us. I imagine the bones like a little factory, producing WBCs,   When they get tired of trying to keep up, they get tired, grouchy and need a break,  They work to hard, neupogen helps them to not work so hard and keep up,


JP case in point everybodys chemistry is unique and different, I have had same problem with HGBs, ANF bounce but are not as bad for me,

Good luck  dear friend, hey can you get a rilke massage? they help also.

Deb

[can-do-man]

Deb............Good luck  dear friend, hey can you get a rilke massage? they help also.
----------------------------------------------

Not sure what that is, but do you give them???

If you do i need one soooooooo bad.:)

candy man

[comeagain]

Hello there keep the line I´m first here !!!!

[Deb_c430]

lol  they are not as violent as Shiatsu or deep tissue massages.  They are most excellent!  

I wish I was in germany or italy you can get prescriptions for them there!    

[can-do-man]

they are not as violent as Shiatsu or deep tissue massages
---------------------
YIKES, ca you can go first my man.

[Kristina538]

I used to have Korean massage before tx whenever I put my back out;  they hurt me but ALWAYS fixed me.   I'd love to go seem them but know I couldn't stand the pain - I'm going to to give my hottie a name instead so we can develop a professional relationship.

"HUM maybe he didn't care"  hehe - Don't even go there!!    It's taken me 4 months to try to convince myself that my team are taking a wee bit of interest in my progress.   However, I temper it with the fact I am part of their 'work'......   so how many people are truly committed to their work ? (luckily, some).

[comeagain]

my values went up to 0.7 to day, so I stay on full dose yippiii !!!!

[Isobella]

Thank goodness for that.  :-)

Shot day just isn't the same "happy place" when I know you are not feeling welll, badss bro.  

On we go....fighting all the way.  

Izzy

[fretboard]

Good news!!  Now everything is smooth sailing!!  God Bless

[comeagain]

Yes  today we give him a blow again from each side but I think we shall not go after hes tail this time, last time i did he smacked me hard right out in the morass.

Rigde by rigde we stand.

ca

[Marcia2202]

I am so happy for you BADSS bro'... I was worried for you there! All the best with your shots today, both you and Izzy.... Kill that dragon bad!!!

Hugs, marcia

[Isobella]

Well, I hope the dragon learned his lesson.  He hit you hard and you are stilll standiing.  

Ridge by ridge---we're gonna get him!!!!

[portann]

can't be too coherent just now but want to also say yippee about your anc going up.

wish i coud focus better but did come across an explanation from the mayo clinic last night about the causes of severe bone pain. the explanation made me feel kind of happy, if you can believe it. i need to look into it further and will get back to you when i can.

hugs.

[Deb_c430]

Rilke  is a much gentler type of massage.  I could use one. Relaxing to both mind and spirit.  I like the things help me keep a postive  attitude,   Not make me angry,   Tx is hard enough with out being p*ssed off all the time.  

Deb

[comeagain]

Thx for the adwise i´m gonna see if its awailable here last tx I did thai massage once it helped but I thought it was to ruff this Rilke sounds prefect while on tx.
My bone pain is almust gone thank God but as you said I can sure use some relaxation.

ca