On to Clofarabine

[jaxem]

hi, cheryl
she’s getting it at Fox Chase in Philadelphia. She went through it with some nausia and got hand-foot syndrome (swelling) which has shown its head in other chemo regimens. She’s down to 0.0 wbc’s & is getting rbc’s & platelets when she thresholds at transfusion points. she started to spike a fever 2 days ago @ 100.3 but antibiotics were IV’d to stem it. hopefully she’ll be able to return home and cycle back to Clinic but I’m afraid of that because of zilch neutrophils. I’m sure they’ll give her prophilactic antibiotics but it’s scary running around w/ no wbc count. now have to wait until her counts start to recover, then biopsy results in a few weeks. docs here are aghast that other institutions will not transplant because of >5% blasts. They haven’t done cords here because they haven’t completed their protocol yet. It’s unsettling if she becomes their first cord transplant but . . . . . who knows what will be decided at this point. I’d rather go to Fairview in MN who have done hundreds but we will do what we have to do!

[cherylm]

My dad had the same issues with the 0 whites. They was why he was hospitalized at NYP. I’ll tell you though, the clofarabine did a number on the blasts. Let me know after she has the bmb. Is her treatment oral or iv??

Cheryl

[jaxem]

she got the clofarabine by IV. The doc says the nadir is typical of most chemos 1.e. about 20-25 days before she recovers. I just sweat that she becomes aplastic & doesn’t recover. She wants to come home but I worry about that too. the doc will probably let her go on saturday. did your dad come home after getting the chemo, then get sick & had to return?

[kami]

Jack,

Is she in the hospital or did they let her go home(I wasn’t clear.) My dad is still in the hospital. They started the neupogen shots 11 days ago, and his white counts have not moved one bit. The doctor said that it’s totally normal that the counts haven’t moved yet. I had/have the exact same concern as you do. Especially considering that he’s had other treatments prior to the induction. I guess it’s a good thing that the same info is coming from your doctor and ours. I feel a little bit better…I think?

His Hematocrit held for about 5 days(for the 1st time)which may be a decent sign of something…
They won’t let his count go under 30(i guess because of his age.) But the white count is worrisome, because the mouth sores aren’t getting better,and they’re constant reminders that the white cells/neutrophils aren’t moving…at all! More than anything, there’s a psychology factor as well(for all of us.) You want to feel like there is some light at the end of the tunnel…and this point it doesn’t feel like there is.

The doc also mentioned that they probably won’t realease him until about 1 week after his counts recover(whenever that may be?)

Good luck on your end …I think of you guys often.

Kami

[jaxem]

kami
she’s still in the hospital. she’s had 2 units rbc’s twice and a couple bags platelets but wbc’s were running 0.2/0.1 (which is basically zero) but I saw today that they were up to 0.4. hopefully they’re starting to move up but need to see a few more days of data. She’s had no neupogen since chemo. I think she’ll be allowed to go home in a few days if she doesn’t run a fever. We’re about an hour’s drive away from hospital. your dad’s getting some form of chemo now, correct? hope it works for him. how old is he?

[kami]

Jack,

His chemo regimine ended on April 1st. They gave him Idarubicin for 3 days, Ara-C for 3 days, and then topped it off with etoposide on the 7th and final day for 3 hrs.

The side effects were pretty manageable during that period. The Nadir came 2 wks later. And even now his biggest issues are the mouth sores and the persistent exhaustion.

The docs say that the slow recovery in his WBC’s is attributable to his age(76) and the underlying issue which is his MDS.

He manages to get up and go walk around the hall for 25 to 30 min daily. But the lack of response on the WBC’s has me a bit nervous.(even though the docs say that it is totally standard) Standard of what?

I’m glad to see that things seem to be on the up and up for you guys(always promising when positive things happen on this site)…maybe you can pass some of that luck in our direction…

k

[jaxem]

kami
that’s a pretty tough regimen for a 76 year old. great he’s gotten through it w/ little side effects. seems like everything is going typical after this chemo. I wish him all the luck in the world.

[jaxem]

well, my wife has been going through a new side effect I’ve never seen or heard before. her wbc’s are down to 0.2 and hemoglobin at over 11 but gets into a condition where a minimal amount of exercise like going to the commode which is about 2 feet from her bed causes her to act like she’s running a marathon, gasping for air. not sure what this is & don’t have a good feeling her doc knows what it is. he thinks it may be an underlying infection because he has seen it before with other patients with no wbc’s. man, this clofarabine is one tough chemo. got her on an anti-fungal & antibiotic IV now.

[annie-anne]

Jack;
THinking of you and your monitoring your wife’s progress. Wondering why she is not getting Neupogen to bolster the WBC (neutrophils esp.)? I get a non-febrile,neutropenia infection frequently with my rounds of chemo…esp.the last three., and have to get on Neupogen, and cipro, stat, also at one time rec’d vancomycin and cyclosporin IV and was hospitalized. The antibiotics can be helpful.
Also consider Oxygen, as a back-up, for the shortness of breath, when you can’t get enuf O2 your whole body is affected.
An underlying inf. could be anywhere…hope your next post shows improvement…..
FyI….I’m on only 3 days of chemo now, same dose, with a potential of five weeks between Rx. Can’t believe it…..I’m hanging in there, and thinking of you both. Miracles do happen.
Annie

[jaxem]

hi, annie
it’s important to know when the body recovers to make wbc’s on its own. the biggest fear is that it doesn’t. she is currenly at zero. when it does, they’ll want to start thinking about a bmb to analyze blast level. since she’s in the hospital now (day#19), her body’s O2 level is 98% and she takes O2 to help her breathing. all her vital signs are otherwise normal. they’re fairly certain there’s an underlying infection somewhere & are trying to find it.

that’s all you can do is hang in there.

[MNladyslipper]

Jack,
I have been folowing your posts. You and your wife are in my thoughts and prayers. When my husband was in the hospital a couple of weeks ago, we became pretty upset when his counts dropped really low. Our doctor told us that they would probably recover after the IV’s were removed, they will often cause your counts to drop. We were skeptical, but they did! He saw an improvement right away and they are staying level. We would like to see his neutrophils up to a 0.5, but he is managing on 0.3. He takes an oral antibiotic indefinitely now. He has to wear a mask everytime he leaves the house and is not allowed to do anything that might stir up dust or dirt even with his mask on. I hope this may be the case for your wife. We saw a rapid improvement in the counts all the way around.

[cherylm]

Hi Jack,

My dad did have the same side effect with the weakness and getting out of breath. I always felt part of it was his copd but the 0 wbc didn’t help. Before he got the infection he was starting to get stronger though. As far as coming home from the hospital, he did come home after the first treatment but when his counts started going down they admitted him. He was going to come home again after the second but that;s when he got the infection. I hope your wife is doing better. Please let me know if I can do anything.

[Lori C]

Jack,

Just wanted to let you know that our prayers are with you and your wife. Y’all hang in there!

[jaxem]

hi, guys thanks for the support. it helps.
my wife is into her 20th day in the Hospital. as with her 1st experience w/ chemo, this one sent her heart’s ejection fraction below 20% (congestive heart failure). the chemo is not known to cause cardio issues but who knows. every one is different. she is still very weak, short of breath & until her counts recover, she can expect more of the same. she’s being admitted into the Coronary Care Unit (CCU) to get a heart med by IV. They can’t do it in the Bone Marrow Transplant Unit where she is now because of protocol w/ the drug. Hopefully, with this med & counts recovering soon, her heart will bounce back.

[Mary4Mike]

Jack,

Please know that our thoughts and prayers are with you and your wife during this rough time. Be sure to also take care of yourself now.

Thanks for the updates.

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