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So tell me, I'm curious

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

So I read today while I was in the chair that ANC between 500 and 1000 is moderate neutropenia. My count was 500 on the nose and the Onc went ahead with treatment. She does not want to give me a shot to up my white cell count so I'm a bit nervious about my infection risk. So the question is have any of you gone on with chemo at a 500 ANC count? If so how did you fair with taking precautions? Did you stay out of the hospital ? This whole thing is making me crazy and with chemo brain that's double trouble. Aaron

jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

Hey Aaron,

Not sure I can answer your question completely but I was given neulasta
2 days after each treatment. I was neutropenic after each treatment
for a period of time until the neulasta boosted the white blood cells.

I had instructions and a list of signs and symptoms to watch for after each treatment.
One of those items was a fever of greater than 100.4. That happened once
and I had to go back into the hospital for 2-3 days where I was given IV antibiotics
and tests were run. Fortunately, I didn't have an infection.

I wasn't happy about having to go back to the hospital but the nurse explained it to me this way, "Better to come into the hospital and get treated and tested, rather than wait and (if you have an infection) be in the hospital for weeks fighting a major infection and interrupting the treatments...".

Hang in there bud!

Jim

jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

I posted this earlier today to a person whose husband is going
through a stem cell transplant. This relates to sanitation
and precautions and I'm sure others can contribute as well.

===============================

In addition to what the others have said, you might want to have
some gloves and masks on hand for him in case he or you need them.
Hand sanitizer as Sue mentioned is good - larger sizes any place
where he might eat/snack, smaller pocket size in the car, and to
take if he goes out. Keep in mind hand sanitizer does not protect
against C-Diff but the old stand by of soap and warm/hot water does.

I assume uncooked/undercooked foods are not recommended until he's
in the clear.

I found a couple links for you:

Cleveland Clinic

eHOW

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1011
Joined: May 2012

Aaron,

I wrote (I think to you) a detailed account of how I was admitted to the hospital for three days after my first infusion, due to a 102 fever. I suspect that virtually everyone has low counts just after infusion. My infusions always ended Friday afternoon, and each Monday morning I went in for my neulasta shot. This kept my count relatively high until the next infusion, so there was essentially no problem. It seems the protocol is to get the shot two days after infusion, or as close to two days as possible. (This ties with Jim's observations.)

When you say the doc "does not want to give me a shot to up my counts" do you mean not give you a shot immediately, or never give the shot ? The first scenario would be normal protocol; the neulasta is always (to my knowledge) held back. If that is what you meant, then I personally would not worry about the situation. It may be that the chemo would simply destroy the action of the neulasta if given too soon after the infusion, and it is not inexpensive. At my center, before insurance, one dose of neulasta was $7,000.

My gut response is that I would trust and agree with the doc's decision to proceed, and understand that neulasta is usually withheld for a few days, but then it is almost always very effective. In fact, after my first neulasta shot (which caused severe back pain for me), I always received HALF a dose, and even that amount kept my counts normal, or above normal.

Remember: do not worry yourself into a panic. Generally, if an onc can keep a patient exactly on a schedule, they will do so, since the infusions are precisely spaced, due to massive clinical studies and research regarding effeciency and effectiveness.

Hang on, Dude !

max

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Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Yea she said she doesn't want to give me any period. I was told it was because of a theory going that it can reduce the efficacy of the abvd. My suspicion is that it may have more to do with money. I just don't know if I can live at all normally at home with WBC counts lower than 500 .

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Aaron,
The thought of you not getting neulasta to boost your counts because of the cost, makes my blood pressure rise!!! Please ask the direct question to your doctor...is it because of the cost or is it truely because it reduces efficacy of the ABVD. If it's the cost, then maybe you can talk to the finance department at your clinic and see if they have programs that can help you out. I did not require the shots, but if I had, they would have cost $10,000.00 per shot at my clinic. I called my insurance company before I started chemo and found out if the neulasta was covered and thank goodness it was. My doctor was surprised how good my counts stayed during chemo..guess I was just lucky in that area. Anyways...hope you don't mind my venting..just got pissed as hell when you said "money" might be the reason. Nobody should EVER be denied the care needed to fight this damn cancer. Take care buddy, and be very careful with catching anything. You could call the American Cancer Society in your area and see if they can help with the neulasta...if cost is a factor. This situation worries me for you. Love...Sue
(FNHL-2-3A-6/10)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1011
Joined: May 2012

Aaron,

I am very surprised. I thought she was most likely just waiting the usual two days.

I would demand some answers here. I have never heard of neulasta being suspected of reducing the efficiency of abvd, or any other drugs. It is used specifically on cancer patients. I understand you being concerned. It does make sense to be very germ-cautious in the mean time. I suppose I most likely would not go out in to public places at all.

Let me know what you find out,

max

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

I think that you can stay home, believe it or not, their are more germs in hospitals. My WBC went to Zero after the fourth infusion, I still was able to stay home. I caught three fevers during my treatment, only 101.5 thank God, I never went to the hospital. Just wash your hands with sanitizer constantly, and rest.. Vinny

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Wow, I didn't think one could have counts to that low and still be home. They told me to stay home but if I had to go out to wear a mask and I should be ok. It's a drag to be in my room keeping away from everything and everyone, if these counts could hang around between 500 and 1000 I wouldn't be quite as worried. Thanks vinnie, what are you doing up at this hour anyway ;). Aaron

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

lol I get up at 5am for work, so on my day offs its hard to sleep in!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1011
Joined: May 2012

Aaron,

Like you, of course, I was on a 14-day pattern with abvd. I would go and have a blood draw several days before infusion, then go see the doctor a day or two before the infusion where he would review everything, and then the infusion. In other words, labs and a doctor visit at least once every two weeks. He did a metabolic profile, and some other stuff.

As I recall (I have the old results tucked away somewhere), about half of all my results were always a little abnormal. He (or my NP) were never the least concerned about this. I do not recall any WBC numbers, but will try to look them up, perhaps tomorrow (Sunday).

I have a friend and former coworker who is late Stage IV prostate. A normal PSA is somewhere around 0-3, approximately, but it is a little more complicated than that.
A few months ago, his PSA was 260.00 ! He went on a pallatative, new drug, which dropped it to 40 -- an amazing response and improvement. But, he has never "felt" sick, and feels good today. My only point is "numbers aren't everything."

max

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jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

Hey Aaron,

My oncologist actually told me to not go to the emergency room if I had issues
while neutropenic. She said just call the cancer center and come directly
to their floor. Vinnie's right about hospitals - though my treatments were
done as an inpatient. I was on the cancer floor(s) which had special air handling
systems and precautions in place. I did have to wear a mask on different occasions
but honestly not very often. There were signs instructing/warning visitors who had
fever or flu-like symptoms to check in at the nursing station. No live plants were
allowed anywhere on the floor.

Unforutnately at that time, the cancer floors were part of the regular hospital in separate buildings from the cancer center. When I checked in for treatment, that meant I rode the elevators with crowds of all kinds of people (visitors, medical staff, etc.). I just made sure I used hand sanitizer often and wore a mask when necessary. They are now adding floors to the cancer center for inpatient therapy - I think everything
(labs, radiology, etc.) will be in the same building very soon. This will be
much more convenient and safer for everyone.

Aaron, you don't have to stay in your room and seclude yourself. You just
have to be careful when your counts are down. One thing to think about if you haven't
already - I don't recall your daughter's age and if she'll be in school this year.
Kids often bring stuff home from school besides books so be mindful of that.

Just remember this is all temporary and as Sue often says, focus on the prize at the end :).

Jim

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

She starts kindegarden in less than a month and that fact is more frightening than anything. Once she starts school I don't see how I can safely live with counts under 1000. She'll be bringing home god knows what every day. I'm probably going to have to insist if my counts don't improve by the next infusion and there is probably no reason to believe they will. I don't know will count improve on their own? I'm just a bit frustrated with the care I'm receiveing right now, damn HMO they just don't seem that mindfull to detail unless you ride them like a cheap suit. Thanks for letting me vent a bit

ThisisLife's picture
ThisisLife
Posts: 94
Joined: Jul 2012

Aaron, sorry to hear about house arrest!!!

I can relate about the bug thing and children going to school! I have a 14 year old and an 11 year old. Every year, within about two weeks of getting to school, they come home with something! When there's a holiday, everybody gets healthy and I send them to school and they come home with something else! So, I'm in the same boat and a little concerned for when school starts.

I was also talking to the health nurse that changed the dressing on my PICC line and she told me not to by hand sanitizer with less than 72% alcohol because anything less than that is not effective in killing all of the germs. Sure enough I checked the storebrand that I was carrying and they were only 60%!!!! So, I will go tomorrow and get some better ones!

Any mouth sores this time?

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

No sores yet, I chewed on ice during the push meds wich supposedly help one to not get a sore mouth. It took 3 days for it to manifest last time so I'll know by monday. How about you how have you weathered you firs week? Are you in the high 80s up there? We got 90s for the next few days and no ac, talk about insult to injury. Stay in touch, being in quarantine I'm checking the forum quite regularly. Aaron

ThisisLife's picture
ThisisLife
Posts: 94
Joined: Jul 2012

Hi,

Yes, we are sitting at 85 right now, so I'm assuming we were in the low 90's earlier. I worked out at the gallery today (which is right on the water)and there was a nice breeze coming in, so I didn't feel the heat much. We are fortunate to have air conditioning and I'm making the most of it. I remember the days when we didn't and it was absolutely unbearable to sleep at night even with fans. I see our neighbours in back of us have put their tent up and are sleeping outside. I think the heat will be with us for a few days!

I mentioned to my chemo nurse about the ice chips and she just looked at me and rolled her eyes. She said some people get mouth sores, some don't. The ice chips are probably coincidence. I will be interested to hear how you make out.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1011
Joined: May 2012

My center automatically brought a cup of ice and a spoon to anyone receiving vinblastine, and encouraged us to eat it during the push. An RN who would not understand that seems in the wrong line of work to me. It was pleasant enough, and came to sort of mark a milestone for my every infusion When my wife called, she would ask, "Had the ice yet?" (After my third infusion, she stopped staying at the whole eight-hour infusion, and went into work instead for the remaining 9 sessions.)

I never got the mouth sores, fortunately, and never used special rinses, either. Taste abnormalities and neuropathy were my only "vinblastine issues." Vinblastine is very similiar to vincristine in chop. I am interested if chop patients were given ice to eat during their vincristine delivery ? I have never heard, one way or the other.

Aaron: Demand your ice and enjoy it in the process ! Heck, demand a snow cone !

max

jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

Aaron, tell them you want our ice chips "Shaken, not stirred" ;).
Don't know if you're a fan of the James Bond movies....

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