Looking for some tough answers to some tough questions

[lucym]

Mom is scheduled to start her 3rd cycle of dacogen on Friday. We have decided to put her in the hospital because during the last 2 cycles she has had terrible diarreha (doctors are calling it a bleed) It starts about day 4 and stops about 2days later. We are thinking this is because her plt are so low, this way in hospital she can get tx daily with out having to go back/forth to the doctor. I asked the doctor last week if he thought it was working looking at the numbers ….
WBC 5.0 8/25 7.9 8/28
HGB 9.3 7.8 8/28 (recd two units)
PLT 24 29 8/28 (last tx 7days ago)

NE 2.4 5.9 8/28
LY 21.r
MO 66.4
EO 0.2
BA 9.9
I do not really understand the numbers above.
Doctor said he needed to do a diff on the MO number, today that showed
Mature Lymphocytes 44
Monocytes 6
Eosinophils 1
Blasts 49
Before starting dacogen 2 months ago the blasts were 89.

Currently my Mom’s BUN/Creatine is 45 (High)
Biliubin total 2.16/direct 1.15

I am concerened about these because it is the first time they are really elevated.

My Mom has zero energy less than 2 months ago, it is difficult for her to sit up in bed/take a tissue from the tissue box/walk. She says she thinks the AML is all through her body and going to travel to her brain. I told her that does not usually happen and if it did she would have pain (is this correct?) My Mom has no pain just serious fatigue. I feel it is because she was hospitalized for two months and her muscles are just shot. I realize she need physical therapy we are working with the doctor to get that set up for when she comes home since she is going in the hospital friday hopefully they will do some there.

My questions are can she be right is the AML all through her body?
Does it make sense to do a BMB with Blood blasts at 49?
Do you think looking at these numbers the drug is working on the MDS but the AML is still all over?
Any ideas on how to take down the BUN and Bilirubin numbers?
Should we switch to Vidaza?
How can I get her muscles back in shape?
Any input would be greatly appreciated.

God Bless you all
Lucy

[katiebear]

Lucy,

I’m sorry, I can’t offer any input as I am fairly new at this. I just wanted to say you guys are in my prayers.

Katie

[willie]

Lucy They want to see the blasts get down to 5% or less. At her % is does not look too promising to do a bone marrow pull. Need to get it close to 5%. I am unfamiliar with decitabine or dacogen. Are these chemos? Either the leukemia or a fungis can travel to the brain the way it was explained to me. A CT scan would show nodules in the lungs or in the brain. Is she running a temperature or having a tough time keeping her temp normal? Also as I understand it she would not have MDS and AML at the same time. She may have progressed from MDS to AML. Prior to her stem cell transplant my wife was on Vidaza and it was extending the time between needing red blood transfusions. Since she relapsed from MDS to AML her only options were chemo. If she is not walking you may want to get some Ted or compression stockings for her to try to minimize potential blood clotting. Thinking positive thoughts for your mom.
Willie

[patti]

Lucy,

Your mom has so much going on! I’m not sure I can help with much of it but I do understand the liver stuff. The BUN/creatinine and bilirubin being high would be indicative of liver function (or less function actually). Is your mom eating at all? Can you juice for her? If she could juice a beet, cucumber and lemon mixed with 1 tbls of olive oil and drink daily it would cleanse her liver and maybe bring those numbers down. But if nothing else, it would help her liver function better at the lesser compacity. If you can’t do juicing for her, you might try Nature’s Sunshine Liv-J. It’s the same principal. Mom is taking that on days that she can’t juice. I think the bottle says to take like 6 or 8 a day but mom is only taking one a day.

Physical therapy for her muscles would be a very good idea. Also, whey protein. Get her to drink two glasses of whey protein a day. Mixing it with smoothies is the best way to drink it. It will help prevent any further muscle wasting.

I can’t tell you if the drug is working or not. I can only suggest just nourishing your mom’s body as best you can with good, wholesome food. I am a firm believer that it helps the chemo work better and keeps the body stronger.

Hang in there, Lucy. It’s a long road you’ve been on. And take care of yourself. Your mom needs you.

patti

[uno grasshopper]

I believe the BUN/creatinine pertains to kidney function, while bilirubin pertains to liver function. They usually run other enzymes as well to check liver function such as alkaline phosphatase, ALT, AST, and albumin. However, considering that the liver is known to have over 500 different functions, those few tests don’t really tell you a lot of what’s happening in the liver until there is already significant distress going on in there. It looks to me like she’s having some trouble with both her liver and kidneys. If it were me, I would discuss switching meds especially in light of the terrible runs she’s experiencing and the utter exhaustion you describe. Just something to consider.

Take care,

Marla

[Russ]

Lucym,
Wish I could help with answers but we need to depend on doctors and trust in the Lord. It is encouraging that your mom’s blasts have decreased. I have only had one week of Dacogen (decitabine) and no diarhea – but slightly constipated. My guess is that she would not do better on Vidaza as I went through that and my blasts went up. Consider a consultation at a teaching hospital that has expertise in MDS. (Like UMASS in Worcester, MA) My prayers are with you both.

[lucym]

Thank you all for the information and encouragement. Jeff thanks for explaining the numbers to me. In the last 24 hours Mom has had trouble urinating, we are in the process of having her hospitalized, I fear there is a blockage in her kidneys. I on the other hand have bronchitus and can not go near her although I am thinking she gave it to me. I will keep you all posted, wishing you all a healthy/happy day
Lucy

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