Hard not to be so sad

[eve]

DO NOT WAIT 4 WEEKS FOR ANOTHER BLOOD COUNT

a mds patient in crisis should definitely have their blood checked at least weekly –

4 weeks is way too long – so much can happen in that time period

push for the test

eve

[Neil]

Hi Patti,
Go for the CBC next week. May not see the new doc, a fresh set of numbers will help.
The new doc has a lot of history to review and absorb. Not all that unusual that he might not connect all the dots. BUT I would not let him take a month to get up to speed.
A fresh look at he counts might trigger another response.
RAEB-t is very difficult to deal with. Situations can changs rapidly. You might want to push for weekly CBCs for a while. At least till the docs have a better handle on her current condition. If there is a lab closer to her, a prescription for the CBC is all they need. They can then fax the results to the doc.

[CarolineG]

Hi Patti,

I agree. I would ask for blood tests to be done on your MIL weekly until they establish exactly what is going on. Things can change so quickly.

As for the fighting, I think that goes along with the territory. My Dad is way too weak to fight now but it is Mom who lashes out now and again. I do my very best not to bite but every once in awhile I get past my limit and I say the wrong thing. Then things heat up very quickly.

All the best Patti. I think about you often and keep on praying.

Caroline

[karenkay]

Patti,
Wow, I can only pray that my dad’s new doc will actually look at his situation the way your new doc is.
I continue to hope and pray for the best for your mom.
With all the stress, a fight was probably coming. Sometimes, it gets rid of pent up anxiety. I hope you hugged and made up
I personally would ask for a blood test next week. Even if it is just the lab work, getting the results may make the doc want to see her sooner. And if you see something that makes you worry, you can push to see the doc.
I don’t know what ATG or decitabine is?? If you care to educate me, I would love to learn.
Prayers and hugs,
karenk

[patti]

Karen,

Thanks. All I know about these two drugs is there kind of like a chemo, I think. I know people have talked about them on this forum but I haven’t done any research because mom’s first doctor never offered them as an option. But, at this stage, mom has really eliminated any form of chemo as an option for her.

I apologized but she didn’t accept my apology and she called my husband’s cell phone tonight so she could avoid talking to me – only I answered his cell phone. I’m going to send her a card tomorrow. In ten years we’ve had one other argument. It did blow over in time, but it’s just different now. She’s pretty hurt. I’m pretty strong shouldered so stuff just goes off of me – normally.

thanks for the caring. I hope your new doc is as good too!

Patti

[Jimbob]

Patti,
I don’t know if your MIL can handle it, but my doc at OHSU clinic insists upon a bone marrow aspiration when blood is out of wack. He calls it “checking on the factory that is making the product”. Had 2 in the last month but did not find anything unusual. Still waiting on final results to see if cells are all donor or if my own cells (and therefor CMML) coming back. They do the BMA to see if something else might be casuing periphial blood problems.
Jim

[Neil]

Hi Karen,
ATG is not for your father. It is a serum made from horses. Side effects are pretty rotten. Fever, delusions, hives etc.A patient has to be hospitalized for 2 weeks or more, dependingon reactions. Patient has to be in pretty good condition. There is ALG also. A rabbit serum that is less toxic, but still risky.
Decitabine is similar to Vidaza. Has been used in European trials for qiite a while. Believe it was also trialed at Sloan Kettering. Like Vidaza it drives counts down before they increase.
You can plug them both into a search engine and get reams of material. BUT there is a very high risk for him.

[karenkay]

Neil,
Thanks for the info. So much to learn!!! You are always so helpful with this and I appreciate it.
Prays to us all,
Karenk

[patti]

Thanks for the good info on the drugs, Neil. Neither of them are for my MIL either. However, today we did get her scheduled for another CBC on Tuesday and no more Nuepogen shots until we know why her white cells are climbing. Jim, I agree with you but I can’t seem to get anyone to do another biopsy. Maybe by Tuesday the doctor will order another one. Especially if the only one she had more than a year ago is now considered to have suspect answers.

Thanks again for all of the encouragment and advice.

Patti

[Luke and Margaret]

Patti
No it is NOT trivial! From your post *I* am feeling jerked around, so I can imagine how you are feeling!

I don’t know if clarity is going to make difference re: treatment or prognosis, but it sure would help you to know what to plan for. More importantly, it will help you to begin the difficult struggle towards acceptance. How the hell are you supposed to achieve any form of acceptance and serenity about all of this if its a moving target?

I don’t know whether AML is so aggressive that things will go critical in a matter of days, but I *do* know that unless you feel you have done everything you possibly can (whether it works or not!) it won’t it right in the long run. The new doc has stirred up a lot. I’m totally for fast tracking his review process and getting him to nail things down for you, now that everything is up in the air the way it is.

I’m so sorry you are going through this. This stuff is difficult enough without the chaos and confusion of unclear diagnosis and prognosis.
Margaret

[patti]

Margaret,

Thanks for your thoughts. How are you and Luke doing? Have you met with the doctor with Luke yet? I have reread your post so many times about what happened in the hosp. with Luke and I am amazed at how fast things can change when all of the doctors don’t communicate and work together. It makes me want to be more on guard in our situation. You are right though, you can second guess all day long, but it doesn’t change the situation now. My best to you and Luke during this time of adjustment.

Patti

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