neutropenia

All posts tagged neutropenia

On the Verge

Posted by tokenhippygirl on October 28, 2010
Posted in: leukemia, My LiFe. Tagged: , , , , , . 1 comment

Karen just got off the phone with Nancy.  My blood count is a mixed bag.  The reds are up over a point each (yay!)… they couldn’t get a good platelet count because they were clotted (I guess this happens all the time and is common, but has never happened to me), but they could tell they were OK.  They may ask me to test again tomorrow just to make sure.  Nancy is checking with Dr. Bigler, who is off today and back tomorrow.  The other thing is that my white count is down to 1.9 and my neutrophils are 950.  We were told my white counts could go down with the start of maintenance. They have.  This is another reason they may want to test me again, to make sure they don’t go lower.  We (my doc, Nancy, and Karen and I) weren’t sure how I would respond to this, to maintenance.  The thing is, not many people have this kind of leukemia so they aren’t sure either, there isn’t a big database of info, besides the fact that everyone is an individual and responds differently, hence another reason they may want to test again.  But, for now anyway, I have to be careful again.  I’m not in the danger zone of neutropenia… I can still fight things off.  It’s just that Nancy said I need to not be around anyone who is sick and we need to make sure we wash the vegetables really well before I have them.  We don’t know if my numbers will come back up, if my body will adjust, or if they will stay down in this zone.  We don’t know any of that yet, especially since I just started.  It’s possible Dr. Bigler will want me tested a couple of times a week again just to see what happens.  It’s possible I will have to take neupogen again (for how long or how often I do not know).  At this point we don’t know.  Only time will tell how this is going to work.  The good news is that because my red blood counts are up my energy is getting better by bits all the time.  That is a good thing.  I don’t feel the difference in the white counts, but I definitely do in the reds.  I knew they were probably up a little.  I can feel it energy wise.

So that is that….  I may not get another blood test until Wednesday next week.  Though that seems like a long time away since I want to know if my neutrophils are still falling.  If they get below 500 I’m in that neutropenic zone where I need to stay away from people, not have fresh fruits and vegetables again, etc.  The other thing is that next Wednesday I have another bone marrow biopsy.  Not looking forward to it, and yet I am.  The procedure isn’t fun at all, but it will be good to know where I’m at.  Knowing where I’m at, with all of this, helps.  Knowledge IS power.

Good news is that I didn’t react to my methotrexate this time.  No hives afterward, like last week.  I took the recommended Zyrtec beforehand.  So my maintenance regimen is good to go.  Mercaptopurine pills every day, methotrexate shot once a week, 15 days of ATRA every three months.  That’s a good thing, no real reaction to any of it.  Getting a reaction always worries me since I’ve had med reactions to things throughout this process.  It gives me anxiety so now I can relax a little about that.  Now we just have to get through the bone marrow next week and figure out how my numbers are going to be, etc.  One thing, still one day, at a time.

Hope everyone has a great halloween this year.  We have some plans to go to a friend’s place to do pumpkin carving on Saturday.  Should be fun.  Living life…  I want my numbers to stay up enough so I can do a little living of life.  Let’s all hope that the numbers don’t go down any more.  Let’s hope they settle in or even go up a tad.  That would be great.

 

Haven’t Posted In A FEW… My Apolgies

Posted by tokenhippygirl on September 9, 2010
Posted in: leukemia, My LiFe. Tagged: , , , . Leave a Comment

Hey gang…  here I am, posting again.  Got some good news today… the numbers are up.  I’m still neutropenic, but now I’m in the moderate category instead of critical.  That’s a good thing.  I’m happy.  Means that a couple of little things that have not been healing, one of them being a nasty mouth sore, will now start to heal.  Yay.  Maybe I’ll be able to eat something besides cream of wheat, soup, and fake mashed potatoes with cottage cheese.  LOL  That would be nice.  Pizza?  A burger?  Uh… some pasta with chicken.  All sounds great to me.

More news from the oncology caseworker as well.  My next pushes (there are two) will be done outpatient and not in the hospital.  They finally have this available at the chemotherapy center at Interstate.  So… next week, if my numbers come up enough… it’s the last consolidation round.  One push on Thursday, after my appointment with Dr. Bigler, and the second on Friday.  Yes, Friday.  It’s my birthday, but hey… let’s get this over with is what I say.  Nancy also set up my next cycle appointment with Dr. Bigler for October 15 (this will be the maintenance cycle, which lasts two years).  I have two different kinds of pills on different schedules from each other (one of them is ATRA so I know that one) and a weekly shot.  I’m scheduled to get that shot on the 15th after my appointment with Dr. Bigler.  It’s an intramuscular.  We’re not sure, but it looks like I might have to have that every week for a two years.  We’re hoping they can teach us how to do it.  Otherwise… travel is going to be an issue.  And as you all know… we like to travel.  We even have travel plans.  So… let’s all hope Karen and I can learn how to do this.  We will find out at the meeting on the 15th with Dr. Bigler.

Much love to everyone out there who has been so supportive of us during this.  I am blessed to know you all and have the love of amazing people like yourselves.  I feel it every day.  This has been and continues to be an emotional roller coaster and knowing that I have such an amazing group out there sending me vibes and love and prayers… well… it means everything.

Sunday

Posted by tokenhippygirl on September 5, 2010
Posted in: leukemia, My LiFe. Tagged: , , , , . 1 comment

Sunday and more US Open tennis.

Got some news today from the doc. I haven’t had a fever in 24 hours so she is taking me off the antibiotic. If I have another one she will put me back on, but for now I don’t have to have it. This makes me happy as I think I may get some more sleep tonight. The other news is that my numbers all went up slightly. And mean slightly…. WBC from .3 to .5 and the all important neutrophils from .02 to .08. My RBCs pretty much stayed the same, and my platelets went from 50 something to 80 something. The doc said she expects I will be able to go home Tuesday or Wednesday. Just have to have the numbers for it. Everyone cross your fingers and send good wishes. I can’t wait to sleep all night in our bed… At home.

For now I’m watching tennis, mom is out for a walk, and things are OK in England where they are on baby watch.

Back In

Posted by tokenhippygirl on September 2, 2010
Posted in: Family, leukemia, My LiFe, The U.K.. Tagged: , , , , . 2 comments

Well folks…. I’m back in. Spiked a fever and had to come in for antibiotics. My counts are very low… So the plan… I have to be here until my counts reach a certain level. Until then I’m here, on antibiotics every six hours…. And constant saline. We are hoping not too long, but it’s all number dependent… So we’re rolling with it. Mom’s been fantastic!

My sweetie made it safe and sound to Lancaster…. No real travel hiccups. I’m so glad. I love that woman!

Yep… Neutropenic

Posted by tokenhippygirl on August 30, 2010
Posted in: Family, leukemia, My LiFe. Tagged: , , , , , . 3 comments

Here we are… day 10 from the start of the last consolidation, and I am very neutropenic again.  Red blood cells and platelets are OK, and normal, but the WBC and neutrophils are low low low.  Nancy says the lowest they’ve ever been.  She said no big deal other than I have to be very careful with myself… the usual when I am neutropenic.  The biggest thing is infection, making sure I take my temp a few times a day since that would be the only sign of infection.  Nancy says this med, the chemo this time around, is new to me, so we really didn’t know how I would respond… and here it is.  The other thing is that my numbers were just coming up when I went into the hospital this last time, so the fact that they went down so fast isn’t probably that unexpected (this is my and Karen’s guess, Nancy didn’t say this).   Who really knows.  I’m hoping they are down, and will spring back faster than last time.  It took them a week or so to come up last time.  This could be the bottom, but then maybe not.  I don’t know how they could get any lower, but then I guess anything is possible.  Let’s just hope the RBCs stay up, as do the platelets.  No transfusions if I can help it.  :-)  And let’s hope the numbers come back fairly fast so I can get out and about again fairly soon.

Otherwise I am hanging at home, watching the US Open first round on TV, Karen is working and gathering stuff to get ready to pack tonight, and things are pretty normal around here.

Hope everyone is having a great day….

Saturday And A Haircut

Posted by tokenhippygirl on August 28, 2010
Posted in: Family, Food, leukemia, My LiFe. Tagged: , , , , , . 2 comments

Hey all…  It’s Saturday.  A day when my honey and I can hang together a bit more…. even though she is still the energizer bunny taking care of the house, the grounds, the shopping, the cleaning, the loads to the dump, and me.  She gave me a haircut today.  I was overdue.  Getting kind of fuzzy on top.  She said it was a bit thinner than last time… maybe this round of chemo is going to take a bit more hair off the top… can’t tell yet.  It’s usually a delayed thing.  For now I’m sportin’ the usual shorty baldy look.  I kind of like it actually.  So easy to take care of.  One tiny drop of shampoo does the whole head.  I probably won’t need another cut for a week or so… Mom will hook me up when I need it when she’s staying with me I’m sure.

I’m a tad tired today.  Just still dealing with the after effects.  It goes in waves.  I at least got on the treadmill this morning for 15 minutes.  Not a super long time, but at least I got on there.  That’s earlier than I did last time I got out of the hospital.  It just felt good to move a little.  I may get on there again tonight for another 15… have to see how I’m doing.  It’s sometimes a moment by moment thing.

So Karen and I, based on last time, are thinking I should be heading toward neutropenia again pretty soon.  Probably by Monday or so… which would be 10 days from the day I started the last treatment.  It was about that last time… maybe a couple of days longer.  Time to make sure there are no fresh veggies and no people with colds around…  It’s a roller coaster.  Just like the doc said… take you down, then build you up, just to take you down again.  All I can think of is that I only have one more consolidation round… and it’s only two days.  Granted it’s back up to full strength of the chemo, but only two days.  The first round… the induction, I had full strength for four days, every other day.  This last time I had a different med at about two thirds full strength for five days straight.  And now I’m rambling…

For now… it’s Saturday… and I got a haircut. One day, one thing, at a time.

Hanging Out With Mom

Posted by tokenhippygirl on August 18, 2010
Posted in: Family, leukemia, My LiFe. Tagged: , , , , . 2 comments

Had a really nice day today hanging out with Mom.  She drove up just to see us and hang out for a bit. I love that woman.

Karen worked hard today, then went out and mowed the lawn.  She is truly the energizer bunny of all bunnies. She doesn’t stop.  A really amazing woman.  I am so honored to be in her life.

It was love all around today.  I am so blessed and lucky.

Tomorrow… another blood test.  We will see if I’m still neutropenic… or not.  Then Friday it’s an appointment to see my oncologist, have a check up with him, and talk about the next step.  If all goes as planned I will be back in the hospital for my next round.  Five days this time and a different chemo med.  This one is blue instead of orange and will be by infusion (IV drip) instead of a push.  Can’t wait to order that hospital food.  ha ha ha!  Will, as always, keep all ya all posted.

The Return of Neutropenia

Posted by tokenhippygirl on August 5, 2010
Posted in: Family, leukemia, My LiFe. Tagged: , , , , . Leave a Comment

Went in for the bi-weekly blood test today and the results are in… I am, once again, neutropenic… yay????? (sarcasm folks!  LOL).  Good thing we were preparing for this and acting as if I was already.  The only no no we committed was that I went in for the blood test today without a mask on, and then we went into Starbucks and I didn’t have a mask on.  We told my caseworker this and she said that I am on the edge of neutropenia… 1.4 WBC and .715 on the neutrophils.  They are low, granted, and I am neutropenic, but they aren’t in the really really low category.  The good news is that the RBC counts are all still OK, so are the platelets.  At least I don’t need a transfusion, which I could’ve told them anyway since I don’t feel really really fatigued.  I do feel a bit tired, but really today I have been feeling pretty good.  I got a little stressed after finding out I was neutropenic, but hey… I’ll get over it.  We were hoping my numbers might be coming up from Monday.  My caseworker ventured a guess to say that she expected they might start coming up by Monday’s test.  I hope so.  The other issue is the herpes I have on my lip.  It started showing up today, which makes sense since this happened to me in the hospital when I was neutropenic.  My body can’t fight it right now so Karen is now on her way to the oncology pharmacy to get a new prescription for me… the same anti viral they gave me in the hospital to fight the lip thing.  It’s not that bad now, pretty small really… we just noticed it and told Nancy about it and she sprang into action.  We don’t want it to get bad so we are being proactive.  The other good news is that I still have no fever.

It’s an adventure this is…  Nothing really changes for us since we have already been acting as if I am neutropenic.  Here’s hoping the numbers rise as of Monday.  :-)