She went for lab today and her platelets were down from Monday. Monday 34 today 14. She is scheduled for another marrow bx Wednesday since they gave her the Neupogen shots after each day of chemo. She will have monthly marrow bx. Her WBC was 1.4 so that was good. Still playing the waiting game. She is otherwise doing well though and enjoys when she feels well enough to get out a little bit without being so very tired.

Those bloody platelets!!!! I am glad to hear Jo's spirits are up. At least this cycle, you are prepared for slower recovery, if it happens. Knowing you are not alone is so reassuring. I gave myself neupogen shots every cycle from day 10 to about day 35 and was never told it may increase the risk of leukemia cells-how strange. Having the shots until ANC reaches 1 for three consecutive days is standard protocol where I'm treated-somewhat troubling that I was not warned about that risk. I did have a BMB between every cycle but not every month-that seems draconian especially knowing how painful they are for Jo. Praying for a clean biopsy and doing the platelet dance.

Julie

Thanks Julie. Unless there is something from her last biopsy that they saw and are not telling us, the shots were the reason they gave us for the monthly biopsies. They are sedating her now instead of just using a local anesthetic.

I feel sure she will need platelets and blood today. Yesterday she could barely walk very far without being extremely out of breath like she had ran a mile. She also had breakthrough bleeding in her eye. The blood and platelets will help for the marrow biopsy Wednesday anyway. The last biopsy she had not had platelets prior and her whole hip area was one big bruise.

Tell Jo she has my sympathies on the biopsy, if have to go and get one next Tuesday for my clinical trial. Not looking foward to that at all. Prayers for a clean bioposy and better blood counts and energy.

Dave J

Thanks Dave, same to you if you require the biopsy. Turns out she only needed platelets but they were back down to 9. It seems she is producing her own WBC but those dang platelets are just so stubborn!

Debbie,
I agree, platelets are so frustrating. I go for my monthly labs Monday and I'm also praying for my platelets. I'm so sorry jo has to have a month bmb, especially considering how painful the procedure is for her. I know that get chemo is based upon a eight month timeline. Had her med team mentioned how her slow count recovery effects the treatment plan?

Not as of yet. I know they decided not to decrease the strength of the chemo even though she took a long time to recover after the first consolidation round but added the shots with the chemo instead to try to increase her recovery time. If that doesn't work and she takes a long time this time also, I guess we will find out what they want to do.

Well, Jo had her bx yesterday and appointment with the doctor. Once her numbers came up this time, she was supposed to have been admitted for chemo this next round and a third chemo added to the two she gets when she goes as an outpatient.

They have decided that her body has not shown them that it can handle this third chemo as of yet so they have cancelled the in patient chemo and when her numbers do come up this time she will continue with the outpatient chemo as before.

Not sure what this means. If they continue giving her the outpatient chemo then how will her body ever get to where it can handle the in patient third type chemo. Seems like they should wait until she is strong enough for the chemo they want to give her. I don't understand but we can only trust in their treatment plan I guess.

Debbie,

I would not worry if the out patient chemo is AriC (which after re-reading all your posts, I think is correct) High Dose AriC is the standard consolidation chemo. Usually given at a dose of 3 for three to four sessions over a 4-6 month time period depending on count recovery. The chemo she is getting in-patient as part of the MDA trial are for BMT and Neutrapedia.

I completely understand wanting the max chemo, I would be the same way; however, sometime (as was my case) the body cannot tolerate all that chemo. My med team has assured me time and time again that there is no data that having a lowered dose of AriC (I had 3, then 2 then 1.5) does not affect remission numbers.

The lead Doc where I'm treated, Finn Peterson, just attended a two week conference on AML in Europe where this was discussed at length. He works very closely with MDA and other centers of excellence for leukemia.

The bottom line, giving Jo too much chemo may permanently damage her bone marrow to the point to where it cannot recover. There are positive aspects that she is so sensitive to the chemo. If she ends up with HDAriC only, she is in the same boat with all of us with Dave Brown leading the charge of the chemo only pack with almost 5 years in remission-that's a great crowd to be a part of :-)

Praying for Jo and your family!!!

Julie

Thanks Julie, thinking about it that way does help with the worry.

Hi Debbie-how are Jo's numbers?

Julie

Still doing the platelet dance. They go up to 43 and then the next draw they go to down to 37 and so on... She has not been having to have transfusions though since her bx last Wednesday. No results yet, of course, but yesterday she had to have blood but no platelets. They think she is rebounding since platelets are not dropping out completely.

She is doing good and in good spirits because she is able to do a little more since there is time between each chemo. She will turn 52 this weekend so at least she will be able to have friends and family over!

We are getting close!

Yesterday platelets were 53, blood 11.4 and WBC 4.6. Also, they told her that she may only have 3 treatments left but they do want one of those to be as an inpatient with the extra chemo. Preferably not the last one so I guess that means the one after this one is she continues to do rebound a little quicker.

Great news Debbie. How many days since Jo's chemo. I know last cycle she went over 80. That's great she is recovering faster. Is this consolidation number two or three?

May 16th was the last day of her last round of chemo which was her 2nd consolidation treatment so I guess about 45 days. She is hoping to reach her designated 60 for platelets this Thursday when she does her lab work and have her third round of chemo the following week.