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cheri
Thu Jul 7, 2011, 07:59 PM
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
Thu Jul 7, 2011, 09:30 PM
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
Thu Jul 7, 2011, 10:02 PM
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
Thu Jul 7, 2011, 11:18 PM
Well, the storm is over, spoke with the Dr and its Avelox for tonight....we'll see what adventures await tomorrow!

Greg H
Fri Jul 8, 2011, 10:53 AM
Love that illustration, Cheri!

Highly appropriate!

Greg

mausmish
Fri Jul 8, 2011, 11:41 AM
Me, too - love the illustration! Hope the Avelox does its job well and quickly.

Marlene
Fri Jul 8, 2011, 12:36 PM
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
Fri Jul 8, 2011, 10:15 PM
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! :D


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
Fri Jul 8, 2011, 10:46 PM
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
Sat Jul 9, 2011, 12:01 AM
Good luck with Your appointment!

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

Neil Cuadra
Sat Jul 9, 2011, 02:52 AM
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 (http://i117.photobucket.com/albums/o65/Wolf26pack/Disneylands%20Club%2033/HauntedMansionConceptArtwithinCl-1.jpg), hatchet (http://i117.photobucket.com/albums/o65/Wolf26pack/Disneylands%20Club%2033/HauntedMansionConceptArtwithinCl-2.jpg), dyanmite (http://i117.photobucket.com/albums/o65/Wolf26pack/Disneylands%20Club%2033/HauntedMansionConceptArtwithinCl-3.jpg), crocodile (http://i117.photobucket.com/albums/o65/Wolf26pack/Disneylands%20Club%2033/HauntedMansionConceptArtwithinClub3.jpg).

cheri
Sat Jul 9, 2011, 09:26 AM
:D

Gokcen
Sat Jul 9, 2011, 05:14 PM
Good luck tomorrow cheri!
My heart is with you.
Take care.

cheri
Sun Jul 10, 2011, 10:36 AM
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
Mon Jul 11, 2011, 03:19 AM
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/2011/06/29/estybon-may-extend-survival-in-mds-patients-who-fail-vidaza-or-dacogen-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
Tue Jul 12, 2011, 12:04 AM
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
Tue Jul 12, 2011, 03:49 PM
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..........:confused: 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
Tue Jul 12, 2011, 04:59 PM
Hey Cheri!

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

This Estybon tria (http://clinicaltrials.gov/ct2/show/NCT00854945?term=ON+01910.Na&rank=13)l 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 (http://clinicaltrials.gov/ct2/show/NCT00854646) is still recruiting. There's a Phase 1 study of oral Estybon (http://clinicaltrials.gov/ct2/show/study/NCT01048619) 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
Wed Jul 13, 2011, 04:25 PM
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.
Mon Jul 18, 2011, 03:38 PM
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
Tue Jul 19, 2011, 09:46 AM
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
Fri Jul 22, 2011, 12:45 PM
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
Fri Jul 22, 2011, 08:21 PM
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.
Sat Jul 23, 2011, 12:39 AM
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
Sat Jul 23, 2011, 09:18 AM
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........

Paula W.
Sat Jul 23, 2011, 06:31 PM
All the best w/ the trial. Please keep us posted. Hope you are feeling better.

Paula

Birgitta-A
Mon Jul 25, 2011, 02:14 PM
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
Mon Jul 25, 2011, 06:22 PM
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
Tue Jul 26, 2011, 01:00 PM
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
Tue Jul 26, 2011, 02:32 PM
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_information-for/clinical-manifestations-cytomegalic-virus/17072-104.html%3c/web:url%3e%3cweb:displayurl%3een.diagnosispro.com/disease_information-for/clinical-manifestations-nephrotic-syndrome/disease_information-for/clinical-manifestations-cytomegalic-virus/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
Tue Jul 26, 2011, 04:04 PM
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! :rolleyes:

Birgitta-A
Wed Jul 27, 2011, 06:24 AM
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.
Mon Aug 1, 2011, 09:00 PM
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
Thu Aug 4, 2011, 09:45 PM
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 :eek:, 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 :p--....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
Thu Aug 4, 2011, 10:13 PM
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
Fri Aug 5, 2011, 01:11 PM
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
Fri Aug 5, 2011, 02:20 PM
"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
Fri Aug 5, 2011, 02:31 PM
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? :D

Lbrown
Fri Aug 5, 2011, 03:26 PM
Sounds like absolute paradise! I love camping, but no energy right now. You will have to camp for all of us! LOL.

Deb

cheri
Mon Aug 8, 2011, 09:27 PM
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! :p

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
Mon Aug 8, 2011, 11:42 PM
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
Tue Aug 9, 2011, 08:44 AM
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--:rolleyes:

cheri
Tue Aug 9, 2011, 12:23 PM
CRAZY!!!!!!!!!!!!!!!!:eek:

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

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

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

:D

Amen!

Greg H
Tue Aug 9, 2011, 12:35 PM
And the gator goes home hungry again . . . .

Glad things are looking up!

Greg

Lbrown
Tue Aug 9, 2011, 01:49 PM
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
Tue Aug 9, 2011, 03:27 PM
Out of curiosity - when did you start the Bactrim?

Deb

Marlene
Tue Aug 9, 2011, 04:10 PM
I too would do what's best for you and not the study.

cheri
Tue Aug 9, 2011, 08:30 PM
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.
Tue Aug 9, 2011, 10:05 PM
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:D

tytd
Tue Aug 9, 2011, 10:31 PM
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

Greg H
Tue Aug 9, 2011, 11:24 PM
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!
Cheri,

It does sound like a little caution is in order. Were I in your shoes, I'd certainly be thinking hard about a little watching a waiting. But everyone is different and you have to do what's best for you.

Keep us posted!

Greg

cheri
Wed Aug 10, 2011, 08:59 AM
Thanks....my gut feelings are kicking in and they have gotten me this far....nobody is going to bully me at this stage of the game!

Some good input here (thanks tytd) and I am giving my brain the day off....but will listen to what my CBC and Dr S has to say tomorrow and then let you all know.....

This is such a wonderful sounding/thinking board that I can't thank you all enough....it really helps me, when truthfully, I am skeptical that the medical profession has MY best interests at heart...they are, and have to, going to treat the masses as a whole, otherwise, no one would benefit........it's just that I tend to follow atypical patterns, and always have! Watching and waiting seems right for me as well....if I miss out on this, then it is meant to be. At least I know I have a healthy heart and lungs!

And as I mentioned, completely overwhelmed, I put in it God's hands-- and it seems he sent me a message, loud and clear! This, from someone, who once questioned her beliefs....NO MORE!!! The power of prayer is unbelievable....I should tell some stories in another forum....

More later!

Sally C
Wed Aug 10, 2011, 09:20 AM
Hi Cheri,
For what it's worth I think you're on the right track as well. No more so than believing that God has sent you a loud and clear message and that you're putting it all in His Hands - because that's where it is anyway.
Keep the faith and God Bless,
Sally

cheri
Sat Aug 13, 2011, 10:18 AM
The decision has been made to postpone the TPA clinical trial....Based on the following, I couldn't see adding more to the mix at the moment....but the folks at CINJ were wonderful and said I could try it again if I ever needed or wanted to....

My last CBC was WBC 2; Hg 9.5, Platelets 52!!!!
These are all up from the previous CBC, 3 days before, and the first rise in all 3 numbers in well over a year. This time last year I was just beginning Vidaza! And this is the first time I haven't needed a platelet transfusion in over a month.....Interesting to learn that having a bacterial or viral infection can influence the # of blasts in your bone marrow....which once again, makes the numbers game a bit sketchy....

I'm a little superstitious about writing this....I hope it's a trend and not a fluke! I feel so lucky and thankful and hopeful for anyone who is battling this crazy disease---that you just never know and cannot give up!!!! I'm having a hard time though, shutting off my racing thoughts....

I feel great and my gut tells me to "watch and wait" for a while.....and letting my body react and adjust to being left alone....
I'm feeling very lucky--Not only was I able to attend my nieces Nursing School graduation (which I would have been in the hospital and missed) but since I didn't need a transfusion, went to the racetrack yesterday, and after losing all day, not only won back my losses but won another $80 on the LAST race! Seems a little prophetic, huh?

Thank you for letting me share my happy news and I wish some good news for all of you....

Paula W.
Sat Aug 13, 2011, 10:38 AM
One word Cheri.......... AWESOME!!!..............

ALL the best! Stay on this path.........

God Speed!

Paula

Birgitta-A
Sun Aug 14, 2011, 05:59 AM
Wonderful Cheri :)!
Kind regards
Birgitta-A

cathybee1
Sun Aug 14, 2011, 06:00 PM
Feeling great is the kind of news we all hope for. Thank you for sharing these last speed bumps and potholes of the journey with us -

Lbrown
Mon Aug 15, 2011, 04:05 PM
Way to go!

Deb

cheri
Mon Aug 15, 2011, 05:45 PM
Just to update:

Today's CBC WBC 1.6
Hgb 9.
Platelets 50K! :D
Seems like #'s are holding pretty well, and hoping for some more rising soon....
Every day is an adventure!

mausmish
Tue Aug 16, 2011, 10:22 PM
Such great news, Cheri. Thanks for sharing with us. Your perseverance and positive attitude are an inspiration.

lindy
Wed Aug 17, 2011, 07:20 AM
Wow platelets 50k!:D
Congrats cheri!
May your counts continue its upward trend!

cheri
Tue Sep 13, 2011, 09:21 AM
It's like deja vu, all over again.....;)

Low grade fever, 99's, low 100's, low counts.....
(Clinical trial didn't happen as updated in another post......)

I believe I've had a bout of diverticulitis.....spastic colon.....ugh.....

Yesterday, my platelets were 19k...not one sign of bruising! Normally I would see little bleeds all over....WBC .05; hgb 8.5
I wonder if when your body is fighting something, it skews all of your blood numbers. Or how about meds? I am on Cipro, Flagyl, Bentyl, Exjade....
Other than feeling tired, and indigestion, I feel ok.

I am seeing the Dr today and will bombard him with my usual 20 questions.......

I don't feel as panicky as I did last time, as I recovered from those #'s. I met a lady whose Hgb gets as low as 5 and she doesn't even feel it.
This machine, the human body, can take quite the stressors.
I'll update you all after my platelet transfusion later today!!!!!