LOW White Count

[cheri]

Hi all
Today my WBC was .5--last nite my temp hovered at 99.8---
Had platelet transfusion, saline, 975 mg of Tylenol and Benadryl....got a shot of Neupogen---temp went down from Tylenol, but current temp is 99.1.....
@7pm EST

This is the LOWEST my white count has ever been without being in the hospital...tomorrow I need 2 units PRBC.....hgb 7.6 today

Other than the typical neutropenic precautions, any advice? I do not want to end up in the hospital before I can get to see the doctor about the clinical trial this weekend...
Thanks!

[Greg H]

Hey Cheri!

An ANC count of 500 -- or 0.5 -- was the dividing line in my clinical trial for putting me on Cipro and implementing all the neutropenic precautions: no working in the garden, no kissing the pets, no salad bar down at Sizzler, no raw fruits or veggies -- all that stuff. You might want to see if your doc will get you some Cipro until your ANC goes back up.

Take care!

Greg

[cheri]

Bummer that I just took temp and 100.4....took 2 ex St Tylenol, and will wait 1 hr then call Dr...I do have a Rx for Cipro but pharmacy closed...I have Avelox on hand that I never used.....we'll see what the doc says....

I hate that this crap always happens at nite when I am ready for bed, and ps, there is a raging thunderstorm outside....

[cheri]

Well, the storm is over, spoke with the Dr and its Avelox for tonight....we'll see what adventures await tomorrow!

[Greg H]

Love that illustration, Cheri!

Highly appropriate!

Greg

[mausmish]

Me, too - love the illustration! Hope the Avelox does its job well and quickly.

[Marlene]

Hi Cheri,

I understand about the fevers at night. If John's temp was going to spike, it did at night.

We had strick instructions not to take anything to reduce the fever when he was neutropenic. It can mask an infection. Anything under 100.5 was not considered to be a fever but once he hit 100.5, we had to call for instructions. Depending on what was going on, they may just prescribe an antibiotic over the phone, or admit him. Sepsis/blood infections can escalate fairly quickly and most likely, your temp would keep rising pretty fast. That's why you don't want to mask it by taking tylenol to bring down the fever until you get assessed.

And unless the fever is high and uncomfortable, it's best to let it run its course if you can.

Hope you're feeling better....M

[cheri]

Thanks Marlene
You are right on the money....my Dr said to only take Tylenol over 101--I was just getting nervous...once I had taken Tylenol on Dr's orders and to wait an hour, but it really didn't make much difference, as my fever kept getting higher and I could feel that it wasn't going to go down soon....That's when I made the last midnight run to the ER....which leads to 4 days in the hospital to run tests galore and they never find anything! I felt my fever break in the middle of the night, and today got fresh blood!

And am happy to say that the Avelox is working, as are the shots of Neupogen I had yesterday and today. Glad I dodged that bullet because tomorrow is my big meeting for the clinical trial!
Happy to report that my temp is normal at the moment!


Greg H & maumish....glad you like the picture! Trivia: Do you know where it's from?
Orange is the color of her parasol and the color for supporting Leukemia!
My newest mantra:
"And the 'gator goes hungry tonite"!

[Greg H]

Originally Posted by cheri

Greg H & maumish....glad you like the picture! Trivia: Do you know where it's from?
Orange is the color of her parasol and the color for supporting Leukemia!
My newest mantra:
"And the 'gator goes hungry tonite"!

Cheri,

I knew had seen it, but I had to Google it to figure out where. Since I cheated, I won't spoil the surprise, but let other folks guess.

Good luck with your clinical trail appointment!

Greg

[mausmish]

Good luck with Your appointment!

I had to Google the illustration, too. It seemed familiar but I didn't know why.

[Neil Cuadra]

Originally Posted by mausmish

I had to Google the illustration, too. It seemed familiar but I didn't know why.

I recognize it as one of the four paintings inside the portrait gallery room of Disney's Haunted Mansion.

The original paintings hang in Club 33: quicksand, hatchet, dyanmite, crocodile.

[cheri]

[Gokcen]

Good luck tomorrow cheri!
My heart is with you.
Take care.

[cheri]

Hi
Yesterday I met with Dr about clinical trial....
This type of drug is supposed to convert aml cells into non aml cells, and it doesn't work like chemo.

The only feedback they have is with the original 20 patients--a couple showed some improvement.....not only did he not try to sell me on it, he could offer no assurances of any kind...
When I asked why there were no others in the study , Dr replied: You were the first one who asked! Hmmm.....Then he went onto say that due to a lot of legal/paperwork mumbo jumbo, they are just being able to start to offer it, and haven't really solicited for it.......
Which once again, makes me "numero Uno" and subject to going through the process, on EVERY level, as a guniea pig....wondering how the insurance company will handle it; testing and such...

I really have no other choice, except to check out the Estybon course....but not even sure this is right. I wish I had that Wahoo! feeling, but I don't...
For the past few days, I have been battling a low grade fever and not feeling my sparkly self...reduced appetite, super tired......
Any feedback? thanks......

[DanL]

Cheri,

I know how you feel about that wahoo feeling. That is a good part of why i have not yet begun treatment. Estybon has some clinical trial experience in the US and has worked quite well for some patients. Estybon appears to have very manageable side-effects, and the results obtained have come from some pretty tough cases as most of the patients have failed hypomethylating agents. Although the linked article focused on MDS patients, Estybon has had good activity in AML as well.

http://www.mdsbeacon.com/news/2011/0...ogen-eha-2011/

I am wondering if the doctors running the clinical trial have any results from the Chinese studies that they can point to? If you could use that information as some sort of baseline, it may be helpful.

Here's hoping for the sparkly self to return quickly.

[Greg H]

Hey Cheri!

I agree with DanL on this one.

I've done some looking, and I can't find much in terms of results for TPA, other than the Phase 1 study the doc you are working with did. Like most Phase 1 studies, that was about finding the correct dosing and figuring out how to deal with side effects. They evidently felt they got that figured out and terminated that study. The one you'd be enrolled in is aimed at finding out whether the drug can produce improvement in at least 20% of patients.

So, like Dan says, it would be nice to know about the results in China. It may be just the thing you need, but there's just not much US data to go on at the moment.

Estybon is definitely further along in the development and testing curve.

Take care!

Greg

[cheri]

I am writing from my hospital room on IV antibiotics for the fever I couldn't shake with oral antibiotics. They have me on quite a cocktail! And of course, there is no worse place to be to try and feel better! Need more blood, after getting a tranfusion Friday--that is a first..could that be from the fever?

My cbc this am WBC .7; Pl 32 (up 2k) and Hgb 8.6....


Anyway, after looking more at the Estybon trial, didn't I see that there was 2-5 days IV and with a complete response, the life expectancy is avg 40 weeks? Less than 1 year? Correct me if I am wrong, please....but wouldn't that be a huge lifestyle change as well as a regime of treatment to survive to get more treatment?.........at least this trial is doable on so many levels, that the process won't add to my stress/exhaustion levels as if I would have to go to New York City or Long Island.......

In the meantime, no one from my local oncologist office is making rounds for 2 weeks.......... I know my Dr is on vacation, but....I am advising the nurses and the hospitalist of my regimen, and thankfully, they aren't fighting me!
I'm telling you, it's tough being the patient, my own advocate, and my own doctor too!

[Greg H]

Hey Cheri!

Sorry to hear you wound up in the hospital. Definitely a drag.

This Estybon trial at Columbia with Dr. Raza does in fact involve a continuous IV "24-hour infusion administered three times a week every other week" for 23 weeks -- longer if it produces results.

Folks treated with that dosing schedule in the Phase 1 clinical trial had a median survival of 49 weeks. The Phase 1 trial at Mt. Sinai is still recruiting. There's a Phase 1 study of oral Estybon at Columbia, as well. It's not clear to me from the description whether it's inpatient.

The NJ trial is definitely closer and may be less stressful than shuttling back and forth to NYC.

Hope the infection/fever gets under control quickly!

Take care,

Greg

[cheri]

Still in the hospital.....
Now they have me on Famciclovir....to prevent shingles--I have some small red bumps, (like 10 on chest/some on back same side) and since my fever is still not back to normal, wondering if it is something viral.........
This is the hardest time I've ever had shaking something....

Anyone have shingles that didn't present as huge blisters, just small red bumps?

[Paula W.]

Hi Cheri,

Cheri, I just tried calling you at home, I left you a message. Seems like you have been going through so much lately.

My mom is still on the Onconova trial. Although she really hasn't been able to stay on schedule lately with so many set backs. As far as I can see, this trial has helped her bone marrow, with her last biopsy showing normal blast. But it really hasn't helped her blood. Still transfusion dependent (about every 7 - 10 days) as well as platelet dependent. She now has severe GI issues w/ ulcers and bleeding that is causing her blood to dropped constantly. She has been in the hospital 3 times (5-7 days as a time) within the past 6 weeks. She has had enoscopy's done each time trying to fix these issues. She also ran a fever 2 weeks ago and was rushed to ER and admitted (fever was up to 102.7). She was admitted to hospital today because platelets have dropped and rbc dropped and she needs to have a tooth pulled. They want to observe her and see if DDS will pull in hospital instead of office. She also may need another scope. I don't see how she can go under every other week for scopes with her body wearing down. The good news is that she looks and feels good. So with all these things her trial is always being put back. She is supposed to go for another bone marrow biopsy Wednesday, but we shall see.

I don't know if this is all part of the disease or not. I feel her body is breaking down and her GI is her weak spot. She is trying hard to fight this and I can see she is feeling a bit defeated. We pray and we are always by her side to support her in every situation.

Please let me know if I can do anything for you. If you would like to speak w/ her trial Dr. I will be happy to give you her contact information.

Keep the faith Cheri. We are all here for you as well.

Paula

[cheri]

Hi Paula
Thanks for the message--I will call you soon....

I got out of the hospital on Thurs--no conclusive tests for any infections.....
I had these weird little red bumps that had a blisterish top you could pick off....they only itched slightly, or not at all. Most across my chest, a couple of dozen at most.
Had 2 units blood while in hosp....last Wednesday.
Discharged with Famvir and Levaquin.......

Could this be a virus of some sort?


I still have this pesky fever--last nite it went over 101 again; Tylenol, lots of H20, cold shower finally brought it under control, and its around 99 this am.....

I feel like the other day, my armpit lymphnodes were swollen, then the last new thing was joint pain...both sides of my hips (could barely lift my leg) and I woke up with ankle pain today.
Tests for Lyme, etc all came back negative.

Yesterday's CBC--W .6; Hgb 9.9; Platelets 37...huh? they went up from 25!
Still really nervous about the low white count......Neupogen seems to exacerbate the fever...

I am so confused! And overall, just tired....and I just feel that I'm fighting something.....and to add insult to injury, my Dr is out of the country, his senior partner broke both arms, and the other 2 associates are overwhelmed and didn't even make rounds or consult with anyone for the past 2 weeks!
I so appreciate your support and positive wishes and prayers.......as I said yesterday, if prayers can heal a person, then I am good to go!

[Lbrown]

Hi Cheri,

Sorry to hear you're feeling so bad. I can't really help much other than offer support, but I read somewhere that platelets are also involved in fighting infection.

My WBC last week was 0.7 but it's been that low for about a month or so now and I am doing just fine, so I am not panicking about it anymore.

Hope you feel better soon. I can't believe all your doctors are away, although the same thing happened to me last summer after I had ATG, so I know how you feel.

Deb

[cheri]

Thanks Deb. I guess I wouldn't be so weirded out by the low wbc if I didn't have a fever and seem so lethargic.........usually I have pretty good energy. Nervous about going to public places or going swimming in a lake or river...

All I wanted to do today was sleep.....I literally laid around all day and took 2 naps. No way was I venturing out in 100+ heat either.

Saw the infectious disease Dr yesterday and no theories...will test for cmv virus, but since I'm virtually asymptomatic on the infection front, we are all stumped. Fever all day 100+--to 101+ and back again...lots of water but WHY am I so tired? Hemo yesterday was 9.3--I've had hemo of 7 and not been this tired....is it the contant fever? And my platelets held steady enough this week (30k)--for the first time in a long time, I didn't get transfused..and I feel so lousy, I can't take advantage of it! (translate: doing something FUN this weekend!)

I hope this pesky fever will not inhibit my chances for the clinical trial........

[Paula W.]

Hi Cheri,

I hope you feel better real soon! I know you must get so frustrated, as my mom does as well. You do everything right and you do what you are told to do, yet things remain out of your control. Maybe you are fighting a virus and it will pass soon and you will feel like yourself again. I'm learning that this disease becomes an hour to hour one, no longer day to day.

Are you planning on doing the Onconova trial? Please let me know so we can compare notes. If so, is it with Dr. Raza?

All the best to you on this journey, I hope tomorrow you will wake up w/ no fever and a burst of energy! Please feel free to contact me either by email or phone.

God Bless!

Paula

[cheri]

Actually, I am moving forward with the TPA clinical trial in New Brunswick....
Pretesting begins August 3 & 4........
I found the Onocova trial too much to handle at the moment.
I just need to get feeling better........