Hi Sandy – mom update

[patti]

Hi Sandy,

I saw your question about my MIL on another post and just thought I’d start a new one. Actually, she’s doing pretty good now. Two weeks ago she busted out with yeast ALL over her body. She’s only had this once before and that was when she was first diagnosed. Also, she started bleeding. Her platelets had dropped like a rock. I had her increase her probiotic to 3x’s a day and use Nystatin 2x’s a day and she’s just about kicked the yeast. I also found out that she had run out of vitamin K and couldn’t find one the strength she had been taking (9mg vs. 100mcg that she could find). Eeeks! I had no idea it was that difficult to find 9mg vitamin K, but it is! Once we got her back on the right dosage of that the bleeding stopped and she’s doing 1/2 pineapple a day instead of the 1/4 that she was doing. So, after a very busy few weeks it seems like things are back in order.

We requested a BMB from her doctor so that we could make an informed decision regarding the Vidaza. He said no! He said he already knows where the disease is at and doesn’t need any biopsy to tell him. Oh, we were mad and I’m saying that nicely!

Today we met with a naturopathic physician who specializes in cancer. Our doctor has known about this person at our hospital this whole year and he never told us how to get in touch with her. I found out about her when I went looking for another doctor for mom. This lady is great! We spent more than 2 hours with her and she really went through mom’s regimen. She had so many good things to say and will see us again in 3 weeks. She’s going to have a chinese medicine guy make mom an herbal formula that will cover everything she needs so she can stop taking 75 pills a day. That will be such a blessing. I cannot tell you how excited she and I are. AND, this lady insisted I find mom a new doctor. She asked who I wanted to take her to and had her secreatary call and start working on getting a second opinion. She said we have no choice but to get mom a new doctor if she’s going to work with this guy on a treatment plan. So, I will switch her. I guess we just needed a kick in the butt to do that.

So, all in all, I’d say she’s doing pretty good right now. Since we had lunch together today she spent a long time going over a list of questions I had given her about how I would need to take care of my SIL someday. I had great relief after doing that. I guess just knowing what she wants for her will help me make decisions. So although I had serious brain drain when I got home, I’d have to count this day a positive one in caring for mom.

Hope Mike is doing well. Been thinking about you both.

Take care,

Patti

[Sandy L]

Hi Patti,

Another person who likes to burn the midnight oil. I am so glad to hear that your MIL is doing better. Please keep posting.

Mike is on his 3rd round. It will end on Friday . His counts are going down but they still are high enough to not warrant any Tx. Yeah!!

He is so nauseous. Nothing seems to work. The icing on the injection areas seems to help in making sure the Vidaza doesn’t lump up in the injection site and there is no pain. There is the same sunburn spots. His energy level is starting to drop. If we could find the right pill for the nauseous feeling, we would be sooooo happy. My children and grandchildren are here for a visit. They leave tomorrow after a weeks stay. Having the kids around has helped raise his spirits.

Will write more after the last shot.

Best regards

Sandy

[eve]

sandy has mike tried zofran for the nausea- works for my dad

did you check with the hemodoc about icing the injection site – my dad’s hemodoc said that vidaza is temperature sensitive and not to ice

eve

[Sandy L]

eve
I thought it was temperature sensitive while going in. He is icing the site 15 minutes after the injections to make sure that it does not ball up. I think Terri said that Bon does that too. Terri – can you respond please.

The dtr just gave him compazine suppositories and they are not working wither.

I will ask about Zofran . Thanks Eve

[Terri]

Hi, Yes Bob does Ice prior to his shots and it has not been a problem with the Vidaza working.
Get the Zofran ODT The doctors office should have some samples IT IS VERY EXPENSIVE. I have a Copay with insurance so not bad but it is one you don’t have to swallow, melts on the tongue. Without insurance they run close to $40 a pill. I now our office has samples of them for people without insurance

Sandy If mike gets a lump massage it lightly (as one of our nurses did) what happens the vidaza balls up in one area and massaging gently will make it spreadout like it should.

Bob had Compazine pill form the first time he started the Vidaza could not keep it down.
The Zofran is wonderful

[Terri]

This is from Pharmions website and It says room temp I don’t think the bit of icing at the injection site will change it from room temp, They actually refrig it if not used right away,
If you go to Pharmion go to where it says Health practitioners not patients there is much more info there on dosing, how the shots are given etc etd

Preparation for delayed administration.
The reconstituted product may be kept in the vial or drawn into a syringe.

Doses greater than 4 mL should be divided equally into two syringes.

The product must be refrigerated immediately, and may be held under refrigerated conditions (2ºC-8ºC, 36ºF-46ºF) for up to 8 hours.

After removal from refrigerated conditions, the suspension may be allowed to equilibrate to room temperature for up to 30 minutes prior to administration.

[patti]

Hi Sandy,

Midnight oil burns a lot a my house. Since my husband works from home my kids like to bug him all day even though we’re doing school and stuff. So really doesn’t get his good work hours in until starting around 5:00 and he goes until about 1:00am because he can get tons done during those hours. But he does at least like me to be up even if it’s *only* until midnight.

That’s great that Mike hasn’t needed any tx yet! You’ve already received some good suggestions about the nausea but I’ll throw mine in. Have you tried ginger tea? Also, maybe you could try phenegren prescription. It’s just another anti-nausea pill but maybe it would work where the others haven’t. Just a thought. I can’t imagine feeling sick all the time. How awful.

We’re still on the fence trying to decide on the vidaza. Right now we’re leaning towards not doing it and letting nature take its course. Mom feels so well and is enjoying life enough we’re not sure it’s worth the exhaustion, nausea, etc. At 75 yrs she’s not sure she wants to go through it all. But, still no decision completely.

Take good care of your Mike and keep me posted.

Patti

[Sandy L]

Thanks Patti, Terri and Eve ,

What is the benefit of icing the area before the shot? Do you think that since he ices after is the reason he is so nauseous?

[eve]

i am almost certain that the icing has nothing to do with the nausea

eve

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