LOW White Count

[Paula W.]

All the best w/ the trial. Please keep us posted. Hope you are feeling better.

Paula

[Birgitta-A]

Hi Cheri,
Since I have been staying at my sommerhouse without a pc I have not been able to follow your "voyage" until today.

I wonder if the fever and fatigue could be symptoms depending on the disease? Infections usually give low counts and your counts seem to be quite OK except for the low WBCs. Very good in any case that they continue to look for infections like CMV.

Hope you will be able to start the pretesting for the TPA trial !
Kind regards
Birgitta-A

[cheri]

Hello everyone
Your support is wonderful and helps me tremendously! At the end of the day, I always feel I have someone to turn to.......who "gets" it!
Birgitta--Thanks for checking in....glad you are enjoying your summer...
What do you know about CMV? All I know is that I need CMV neg blood and platelets...it's related to herpes type stuff.........

Here is the latest:
Today's CBC was WBC .6; Hg 8.3; P 29---My platelets have hung around 30 for the past few weeks...the longest stretch since last August! My Hgb continues to take big dips--Thursday was 9.3, Monday, 8.4; last Transfuion 2 weeks ago....
Fever has continued to run from 99+ to 101.9, up and down all day but worse at night; night sweats to beat the band....no chills, rigors...

I have had these blister like bumps that started on my chest, then travelled down my stomach, and today I found a few on my thighs...they look like a little cigarette burn with a blister top...they travelled top to bottom of my body, slowly, over the past two weeks...weird......and also during that time, I have had an array of odd symptoms--awful hip muscle pain; nerve pain in my hand, major fatique; heavy, dry eyes; decreased appetite--I feel almost flu like....

Side effects from antibiotics? Virus? Believe me, I hope this mystery gets solved...and soon!

[Lbrown]

Cheri, it sounds like your body is fighting something and maybe this is why you're so tired. I guess suggesting rest is obvious...

I had a WBC crisis about 20 yrs ago, I had a huge fever and swollen glands. Now when I look back on my symptoms I think I had erlichia. It wasn't recognized in people until around 1999 and I was sick in 1991. There are a bunch of bacterial infections transmitted by ticks that can do a number on your WBC.

Hope you feel better soon and hope they figure out what it is. That is very frustrating.

Deb

[Birgitta-A]

Hi Cheri,
As far as I understand CMV infection without symptoms is very common but immunocompromised persons can get symptoms. Here they report symptoms - I can't see anything about blisters. http://en.diagnosispro.com/disease_i...12848-104.html

The doctors will soon know if you are infected with CMV and need treatment. Side effects from antibiotics can give all kinds of symptoms often from the skin. Be careful with the blisters - the nurses should tell you how to treat them.

As Deb wrote there are many diseases we can get when our WBCs are low. I got a tick bite though I am very careful and put Frontline on my cats when we are at the summerhouse. No signs of Lyme disease after more than 3 weeks and I have been taking Tick Born Encefalitis vaccination many times since we live in a place where TBE is common.

Like Deb I Hope you will feel better soon!
Kind regards
Birgitta-A

[cheri]

Doctor says these little bumps are mini infections from stuff ordinarily on the skin, but the low WBC can't fight them---I guess I'll have to accept that, but it seems odd to me that the way they broke out top to bottom.......Left alone, they dry up on their own.........whatever...he said virtually all my complaints are from the cancer multiplying quickly....so I need that clinical trial, which pretesting will start next week...It's pretty much my only hope at this point!

I got a b-12 shot and will see if that helps at all with my fatigue! But now I'm ready for a nap, so maybe not!

[Birgitta-A]

Hi Cheri,
You know when my neutrophils were only 0.1 Sept 2007 after three infections I got small white spots on my arms (they are still there) due to fungal infections. Then a dermatologist told me to use a skin lotion called Propyless with 20% propylenglycol (alcohol) to keep skin infections away. I can get this body lotion on a prescription so I don't pay anything for it and I have used it since 2007.

My neutrophils have been very low many times when I have tried drugs that my bone marrow don't like for example Exjade and Thalidomide but I have never had any skin infections again. I am not sure if you can get this lotion in the US but there should be other body lotions that can keep infections away.

Now we only have to wait a few days until we know if you will be accepted for the trial.
Kind regards
Birgitta-A

[Paula W.]

Hi Cheri,

Just was hoping you would have an update for us, to let us know how you are doing. You are always on my mind and always in my prayers.

Hope you are feeling better and getting ready for the start of your trial.

Paula

[cheri]

Hello friends.....
Thanks for your care and concern!
Here is the latest....
After getting a call from the health dept, that my blood test came back for positive antibodies for Rocky Mountain Spotted Fever , it was determined that is was an old infection, not an active one. Surprise! When did I have that?
My fever has subsided--crept down each week to where I am finally fever free for the past 2 days.

Today's CBC WBC 1.2, Hg 9.1, Platelets 32k--they have held for almost a month in the high 20's/low 30's!!!!!!! Whee....and my rising white count makes me a lot less nervous.....seems to me I had some crazy virus, or latent reaction to blood or platelets or something....

Just finished 2 grueling days in New Brunswick, testing for the clinical trial--MUGA scan (heart pump) Lung Function; EKG, Bone Marrow Biopsy, numerous blood tests and various nonsense. I passed all of the tests so it's a go!

The trial starts next week, but I am going camping this weekend! What the heck! This is what I am fighting for so I may as well have a dose before this next cycle of treatment. A big dose of nature is in order....Out to our family retreat-- remote 12 acres with cabin, grown son and ex husband in tow (my ex came out to help me from Arkansas to get through the latest and last of it--or maybe escape the heat --....Fatal diseases sure do put some weird spins on interpersonal relationships--but Charlie is a huge help and comfort at this point) But we are EXHAUSTED!
BTW, this trial medication is supposed to take the AML cells and turn them into productive blood cells! Wouldn't that be wonderful? If there were something positive, other than chemo just killing the cells......If it works for me, we all win! It would be a GODSEND to have an option for AML! And let other folks know about this trial, available through Cancer Institute of NJ...
Contact me for more info or check out the CINJ website...

So next Wednesday the 10th, is THE day! Please send good vibes that I tolerate this TPA in the hopes that we can find a miracle solution! I will keep you all posted, and hope your fights with your disease and loved ones are going well.......

[Greg H]

Hey Cheri!

I'm really excited for you; I hope this trial is the answer that you -- and lots of other folks -- have been hoping for.

Have fun camping!

Greg

[Birgitta-A]

Hi Cheri,
Good that the fever disappeared and that you can participate in the trial ! You are really very tough - camping in your situation. You deserve a good response to the TPA drug!
Kind regards
Birgitta-A

[Lbrown]

"Abnormal laboratory findings seen in patients with Rocky Mountain spotted fever may include thrombocytopenia..." -- Wikipedia.

Glad your WBC is recovering - what a relief. After you've had it so low, 1.2 is just wonderful. Now have a great time camping - avoid ticks - and good luck with the clinical trial!

Deb

[cheri]

Fortunately, the Gods have smiled upon me in order to make this happen:
No fever, better WBC and platelets above 30! This trip to the cabin is much needed soul food--but 2 weeks ago I wouldn't have had the strength or energy to even make the 5 hour drive, let alone cook over an open fire, collect wood and haul pure water from our neighbors well, and walk up and down the hill (we are way off the road) But it's far from uncomfortable! Over the years, we've made life at the cabin pretty cushy--beds with mattresses, warm and dry.
NO electric or running water, but we have Coleman lanterns, oil lamps and battery operated fans and the like. We even listen to old time radio shows at night.....We are able to take hot showers thanks to large thermoses we hang in trees...hopefully it won't rain, but even so, a rainy day at the cabin beats a sunny day in the hospital!
Thankfully, that area isn't a large tick zone!
And it is the one place on Earth where I feel I truly belong. Can't wait!

I wish you all well, and will continue the saga when I get back! How can I miss with all of you on my side?

[Lbrown]

Sounds like absolute paradise! I love camping, but no energy right now. You will have to camp for all of us! LOL.

Deb

[cheri]

Ahhhh......
Back from a rainy woodland weekend, but worth every soggy moment!
Heard and saw the Barred Owl; the smell of a wood fire, and loved ones who I mercilessly beat at "Sorry"...TWICE!

The good news is, this morning's CBC wbc 1.3, Hg 9.1, platelets 37....Huh?
How is it that my # are stable all of a sudden....I feel pretty good of late...
(The Rocky Mtn spotted fever issue was a false positive--apparently, there is no mistaking it as it is very severe and life threatening......)

Am I doing the right thing, doing this clinical trial? Don't have the last BMB results yet....Do I walk in (again) for treatment a healthy person, and put myself at risk, or is this latest gift of no transfusions just a little blip on the radar....

This, on the eve of starting the premed regime and heading to New Brunswick is what is weighing heavy on my mind.......

Any thoughts?

[Greg H]

Cheri,

Isn't this a crazy disease. Just when you're about to take a new step, it goes all weird on you.

I'd say ask the docs. Will they have the BMB info? That may be a key consideration. But if things are stable at the moment, maybe they won't mind giving you a couple of weeks grace period.

On the other hand, it might be better to start something new when you are doing a bit better. Do we expect that the drugs are going to lower your platelets before improving your counts? If that were the case, going in with higher plates would definitely be an advantage.

Always tough decisions . . .

Good luck (I'm glad the soggy camping went well.)

Greg

[cheri]

Consideration #1
I just had all of the pretests, (last week) that are only good for 2 weeks....
The idea of postponing will most likely not appeal to the powers that be, as I think all concerned are very excited to get started and move forward with this study. I am the face of Phase II! Although one more day may not make a difference, but starting something on a Thursday leaves stuff looming on a weekend where there is just a skeleton crew.
Consideration #2
It is to my best advantage to start when I'm better, not worse, I would assume....to the best of my knowledge, this treatment should not have any adverse effects....... unless it kills me...(oops) I think it's the type of thing that will either cause a change or do nothing--no in betweens.

While I would HOPE those in charge of the study would tell me if they saw signs indicating that any bone marrow improvement, would they risk losing their prime specimen, at the 11th hour? And it's not as though my numbers have jumped to such a degree that it would indicate a spontaneous remission. I still look completely normal and nobody can believed I am sick.

At the end of the day, all I can do is leave it up to God. I have gotten this far--the prayers I have recieved--divine intervention is the only explantion. I have outlived many in my position. Maybe all that I have gone through has led me here to try this new drug, not only for me, but for all of the others behind me........
I will write more from the hospital--

[cheri]

CRAZY!!!!!!!!!!!!!!!!

As I am packing to leave for the trial.....

My Bone Marrow Biopsy just came back 8% blasts!!!!!!!!!!!! (they had been reported as 27% in June)

Now they can't do the trial because techically, I haven't relapsed...



Amen!

[Greg H]

And the gator goes home hungry again . . . .

Glad things are looking up!

Greg

[Lbrown]

My advice would be do what is best for yourself, and nevermind being in a study for the good of mankind or research. If it is in YOUR best interest to be in the trial, then so be it. If not, then go with that.

Glad you enjoyed your weekend and are even feeling better!

Deb

[Lbrown]

Out of curiosity - when did you start the Bactrim?

Deb

[Marlene]

I too would do what's best for you and not the study.

[cheri]

LOL Greg

Thanks Deb and Marlene.......BTW I started Bactrim when I began Viadaza, 1 year ago........3xweek, prophylactic..

The doctor seems like now he still wants me to do the study, even with 6-8% blasts, he's calling it relapsed AML and asked for my very 1st BMB back in OCT 2009--I will be sending him those, but I think it was a poor speciment and nowere on the report does it say AML or blasts over 20%..time is running out for the pretest viability, (only 2 weeks) but I don't think I want to take a drug so that my 6-8 may drop to 1-2.....does that sound reasonable?

I think a wait and see approach is in order for a while.........input appreciated....maybe tomorrow I will scan in my BMB report so someone can help me decipher it...not at home now...
Thanks everybody!

[Paula W.]

WoW Cheri, What a roller coaster......... Is this trial you may or may not be doing w/ Dr. Straier? I'm just curious.

Always do what is best for you, and if waiting is best, then so be it.

The trial my mom is on has improved her bone marrow thus far. 2% blast, so far not at risk for AML. Her most recent bmb was yesterday (monday 8/8/11), I will let you all know the results when we have them. She has been transfusion dependent but they put her on this blood thickening drug which has helped her hemoglobin stabilize in the 10's.

In December the dr. told gave me a "not so good" report and so far she has beat the odds. So keep the faith and do what is best for you!! I will tell you that when my mom started the trial she felt great and she was strong. So I do believe trying a drug when your well has its benefits.

All the best always, please keep us posted.

Paula

[tytd]

Hi Cheri,
I have been following your story along and think you are such an inspiration. If it were me, I would not go for a trial for AML if your bone marrow aspirate now does not confirm AML. I had heard one of the MDS experts in one of the webinars say that the microscopic interpretation of the number or percentage of blasts in the bone marrow aspirate is better than the flow cytometry report where you sometimes get a discrepancy in the blast # report or a falsely high number. Do you know if the bone marrow aspirates in 2009 and earlier this summer had greater than 20% blasts or was it just on the flow cytometry report ? Also, if you had had Neupogen before the marrow was done, I think that can affect the blast count. I think it is time to go back to square one and I'm certainly hoping the the 6-8% blast count is the right one, then you can look at other treatments for RAEB. Hey, you never know. Good Luck! tytd