Hans' progress, ? about chemo recovery

[Ensnee]

Hi Everyone,
Sorry I haven’t posted in a while. I’ve been spending every day from about 4-9 p.m. at the hospital with Hans. He’s on Day 23 of his treatment of induction chemo for AML. He’s had some ups & downs, but on the whole has been doing quite well. As of today his counts were:
RBC 92, platelets 44, & WBC 0.8. The WBC fluctutates a little from day to day. My question is about how he seems the last couple of days: he is extrememly tired, has NO appetite or thirst and is retaining fluid. They have put him back on Lasix to get rid of some of it. He has been on a lot of I.V. antibiotics, and also an antifungal, which apparently has steroids in it. He also gets a pre-med cocktail everyday before the antifungal to prevent side effects. This contains Demerol, which is probably why he is so sleepy, & he gets this at around the time I arrive every day. The sleepiness and fatigue were not as pronounced the 3rd & 4th days, in fact he was very alert. I’m just concerned that he’s retaining fluids, is so tired & no appetite,
even though his counts are going up. Any comments or thoughts?
TIA, Esme

[Suzanne]

Glad his counts are going up. The fluxuation-or ‘false starts’ in the white are typical. Sounds to me like they are watching for all the same things they watched with me. That fungal treatment is no fun. They gave me mine at night and the pre-meds caused me to sleep right through it thank goodness. Some patients got the “shivers and shakes”. My guess is that he will feel a lot better when his counts come up enough to start taking care of things.All food tasted like cardboard until my counts came up. I still remember the first thing i ate that tasted good.i was out of the hospital and well enough to go to a wedding celebration. hang in there.

[Ensnee]

Thanks so much, Suzanne, for your comments. It really helps to know that you went through the same thing. I guess Hans is doing as you did — sleeping through the anti-fungal treatment. I just get nervous with him retaining fluid and feeling so tired, since before my dad died, of stomach cancer which travelled to his liver, he was also retaining fluid because his kidnies were shutting down. Another patient on Hans’ ward died the other day, utlimately from kidney failure. She was the 3rd person who has died there since he went into the hospital. Not fun.
Anyway, most of the time I’m feeling positive, but sometimes the fear creeps in.

hugs,
Esme

[Kathryn]

Hi Esme,

I have been thinking of you and wondering how Hans was doing. I am sorry that things have been difficult, both spiritually & physically. I hope that things turn around soon… better days are coming!

You’re in my prayers.

Take care,

Kathryn

[sarah]

Esme, Thinking of you both. Continued prayers sent your way. Hope Hans feels better soon.

[DonUK]

Hi Esme – do the hospital record his urine output ? There is a lower limit beyond which they get concerned but it is incredibly low. If he’s going to the bathroom twice a day then I’m sure his output is OK. The docs can give you a pill (can’t remember the name – we use to call it the wee pill) which makes you go.

I’m sure if the docs were concerned they’d have him on that. If your worried – ask the docs – that’s what they are there for. (Sounds obvious but can sometimes be intimidating/frightening).

[Ensnee]

Hi Don, thanks for your answer. Yes, they are doing a urine intake/output chart all the time.
They have him on I.V. Lasix and yesterday also put him on an oral diuretic. He has been on the Lasix on & off, but they discontinued it for a few days last week, even though he was gaining weight. At the high point, he had gained 9 kilos!
They’ve also cut his I.V. fluids, so hopefully this will all deal with the problem. At least his lungs are still clear. Most of the fluid seems to be in the lower half of his body.
I see your partner Karen had a BMT. I hope she’s doing okay!

[Ensnee]

Thanks Sarah & Kathryn, for your prayers. Hans seemed a little better yesterday. Not as tired, and he took 3 walks, one with me, and ate a bit more yesterday. He’s still rather depressed, though I did get a few smiles out of him.

Esme

[B. Greene]

Sounds pretty much par for the course. He should get to feeling much better as the white counts come up. Hopefully the worse is over and he will soon be out and about doing the things he loves. It was always so startling to see the change for the better once things started going in the right direction. Glad to see he is walking; that is a big help and will hasten his recovery.

Best wishes, Barbra

[DonUK]

I agree with Barbra – physical exercise (even a tiny amount) helps – and also gives a sense of achievement each day. With respect to the fluid gain Esme, I know Karen’s weight often jumped a few kilos in just a day. I don’t think the positive fluid balance is as important as ensuring the body is producing urine. I seem to remember a nurse saying they start to get a bit concerned if urine output is under 300 ml per day.
Please – I’m no expert, it’s just what I can remember !
Karen is doing pretty well – I must write a long post at some point, she has signs of CMV activity in her blood so she’s back in the hospital under treatment, but apart from that things are going well.

[shirlsgirl]

Hey Esme,

Just want you to know that I’m thinking of you and Hans. The ups and downs must be so difficult. Glad to hear that Hans is walking around though. Is he able to sit outside? The sunshine feels so good. Hope things get easier and Hans is feeling better.

Take care,

Jody

[Ensnee]

Thanks, Jody, and Don, I’m glad Karen is doing well. It’s so heartening to hear when people fight and get somewhere!

Today was good. When I got to the hospital, Hans absolutely grinned at me, and pointed to the board across from his bed where they write his “numbers” every day. At first I didn’t notice, but then I finally got it: his WBC was 1.1, AND his neutrophils registered for the first time, at 0.4!! That means that he may be able to come home fairly soon! Tomorrow the nurse is going to teach us how to clean his Hickman line. Woohoo! As for the sunshine, it did feel good today. There is an atrium on the roof of the hospital where you can actually sit outside, but he is still under risk of infection, so we can’t go off his ward, just yet.
Hans was grumpy again later, because he had gained weight (meaning fluid) since this morning, so they gave him some more Lasix, and he peed twice in short order. Also, he got another “brown bag” as we all it — the anti-fungal, and he really HATES that stuff. But all in all, a positive day.

Happy Mother’s Day to all…Esme

[Suzanne]

Congratulations on that white count and the beginning of neutrphils! All sounds normal! At one point I had enough of the lasiks-especially at night so I took all my clothes off to ‘make weight’ so I could sleep in peace. That fungal treatment is not fun- my nurses called it the ‘shake and bake’ treatment. I was so nervous about it that I got mine at night with a prior treatment of ativan. Slept right through it.

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