Watch and wait ends, Vidaza begins.

[Chirley]

Hi,

It's finally all been approved and organised. I start Vidaza on Monday. I'll be having IV 7 days in 28. Here's hoping I have the same response as some others here and become transfusion free after the 1st cycle. I'm a little worried about my white cells which were 0.5 last test. My ANC was 0.15. My doc said my neuts might even drop to 0. Now that's scary.

I hope you all stay well.

[Birgitta-A]

Hi Chirley,
Good luck with the Vidaza treatment!
Kind regards
Birgitta-A

[Gene_In_Va]

Good luck! I'll keep my fingers crossed for you as well.

Gene In Virginia

[launch]

Hello Chirley,
Good luck to you and I will be praying for your response to be as good as my husband, Ron's response! Keep us posted! Cindy

[Chirley]

Hi, Well I'm in day care at the moment and am about 10 minutes into the 1st dose of Vidaza. I had a premed of Navaban (?sp) to prevent nausea.

I also have to have a unit of blood when this is over and another unit every day for the next 3 days.

Hb 76
Wcc 0.5
Neuts 0.09
Lymphs 0.18
RCC 2.8
Retics 6

A couple of my liver enzymes a little high at baseline. I'll be interested to see what happens with them.

I got a shock when the account for today alone was presented to me as $1,270.00 (just for the Vidaza) but it's not as if I wasn't warned. Oh well, easy come easy go.



Same time same place tomorrow.


Hope you are all keeping well.

[ann]

Praying that your treatments help you as much as they have my husband. A year ago, I didn't think he would live until Christmas. He didn't get better until the second or third round of Vidaza but it has been up hill since then. I just wish he didn't have congestive heart failure and emphysema. He is on a 28 day cycle getting the treatments for 5 days straight and then we go back every Monday for blood tests. If he has a drop in his counts, he is given Procrit. Last week his white count ws extremely low and they put off his Viadaza treatment. He goes back Tuesday and we hope his counts have risen.
He has a port and that makes getting his chemo much easier than being stuck each time we go for Vidaza.
God bless you and keep us posted.
ann

[ann]

Sounds like you are on the same course of treatment as my husband. He had to have transfusions when he first started the Vidaza. He had to have one transfusion, or I should say they did three units before they let him come home from the hospital a couple of months ago. That was the first transfusion in months. We had gotten complacient.
Keep your chin up.

[Gene_In_Va]

Hello again Chirley,

I'm not familiar with the Health Care System in Australia. Are any of your treatment costs surrounding the Vidaza covered?

How are you doing now after your 1st couple of days?

Hope things are going your way.

Gene In Virginia

[Chirley]

Hi,

I've just come home after my 2nd dose of Vidaza. I was very pleased last night and today that I felt so well. No nausea or discomfort of any sort.

Today I had blood drawn and then the antinausea pre med and then the Vidaza started. Half way through the nurse came and gave me my blood results.

Hb 74
RCC 2.6
Retics not done
WCC 0.7
Neuts 0.10
Lymphs 0.30
Platelets 140

I was a little upset that my Hb had fallen even though I'd been given a unit of blood yesterday. For the first time ever my platelets had fallen below normal and even though I know they are dysplastic too, it was still a shock for the numbers to have started to fall.

The nurse went away to ring my doctor and it gave me a chance to think and I came to the conclusion that just 1 dose of Vidaza must be working already. That it is already in the marrow and killing off the dysplastic cells and this is causing the numbers to drop. I was told that this would mostly happen mid cycle and is a normal response to Vidaza but I have to believe for my own peace of mind that the Vidaza is working a lot faster and explains the drop in counts.

I had another unit of blood after the Vidaza and I have 2 more units ordered for tomorrow with the query that I'll be having 2 units a day from now on.

On a more subjective level, I felt quite well up until late this afternoon and although I still feel well with no nausea, I feel as if I have hit a brick wall. Utter exhaustion has hit. Maybe it's the chemo and maybe it's psychological due to the stress of starting treatment and the decline in counts. No matter what the reason, it's still real and I need to go to bed so I'll say Goodnight.

Hoping every one stays well.

[Helen Robinson]

Hi Chirley

We are thinking of you and sending positive thoughts that the treatment is bearable and very successful. Try and stay calm if you can and not stress about things you have no control over. I find that when David worrries he makes himself even more miserable. This is easy for me to say but his worry spells affect my health and I am not the patient.

Best wishes

Helen

[Chirley]

Hi,

I'm in daycare at the moment. I've had my 3rd dose of Vidaza and am in the middle of my first unit of blood.

Blood test today

Hb 84
RCC 2.6
Retics not done
WCC 0.7
Neuts 0.2
Lymphs 0.2
Platelets 150

Hb is better, neuts are best they have been since April and platelets back in normal range. All in all I'm a happy vegemite (apologies for the Australia ism).

Although I still have to have 2 units of blood today, I think I'll get away without a blood transfusion tomorrow.

Thanks for the good wishes I think they're working.

Hope everyone is well.

[Gene_In_Va]

Hi Chirley,

Looks like your counts are improving daily!!

From others I have talked with and my own experience....don't fall into the trap of "being your counts". They're going to fluctuate some as a course of normal ups and downs.

You are doing great. Don't be concerned by the "washed out" feelings from day 2, ok?

It sounds like you're in good hands and that things are going well.

God speed and "you go girl"

Gene In Va.

[Chirley]

Thanks for the advice. I saw my doctor today for the first time since I started the Vidaza, he only does Thursdays at the day care I'm going to. He said the same thing, don't take much notice of the daily ups and downs but at the overall trends. He said he would be able to see a trend after a few cycles.

I didn't need a transfusion today but I have to have another 2 units tomorrow. That will make 6 units in 5 days. I have been transfusion dependent for a number of years but this is the worst my Hb drops have ever been. Is it possible it could be the Vidaza working already? I told my doctor today that I was sure it was working and he just smiled and told me that I was being a bit too optimistic.

My platelets dropped to 80 today which I think confirms my thinking that the Vidaza is working.

I was told today that when we see what the Vidaza is doing he will more than likely start me on VPA as well. The man in the next chair told me that he had started VPA and that he had to give up driving because it was making him tired and delaying his reflexes he also said he felt his thinking was affected. Has this happened to other people?

We don't get tornadoes in Australia very often but we had one to the south of where I live this morning. There was quite a lot of damage and some people were injured. They are predicting storms for my area this afternoon, I'm hoping we don't get a tornado too.

Hope everyone is well.

[Birgitta-A]

Hi Chirley,
Good that you don't have any nausea !

You know low counts are really an adverse effect of Vidaza and does not indicate that you will have a positive effect of the drug but of cause we hope that the result will be OK.

Valproic acid often makes the patients very tired (called somnolence) http://www.rxlist.com/depakene-drug.htm.

The combination of Vidaza and valproic acid has showed good results in treating several types of cancer. I can’t find a study on patients with low risk MDS.
Kind regards
Birgitta-A

[Chirley]

Hi, I've finished 5 days of Vidaza. I had the weekend off and am going in today and tomorrow for my final 2 doses of this cycle.

So far, no nausea. The only side effect has been fatigue and vague muscle soreness which may or may not be due to the Vidaza. My doctor added a magnesium level to the blood test for the soreness and the results were just on low normal level, so I don't know what is causing the soreness.

Blood results are weird. Hb drops fast. (was transfused on 4 of the 5 days last week). Platelets dropping. WCC staying the same. Now showing metamyelocytes in the blood. Liver enzymes slowly worsening. A lot of my biochemistry tests are now abnormal. e.g. protein down, albumin down, sodium down, creatine kinase down etc. Kidney function is normal.

I had better get ready to go to daycare.

Keep well.

[Hopeful]

Hi,

I can't remember if you mentioned this already, but were you test for PNH?

[Birgitta-A]

Hi Chirley,
Too bad with the low HGB and platelets but as far as I understand a very high percent of the patients do get that type of adverse reactions - at least you seem to feel quite OK without nausea. The other tests are not so important - you know we manage well with 1/3 of the liver for example.

Hope your counts will recover as soon as the first cycle is over!
Kind regards
Birgitta-A

[Chirley]

Hi,

Today is my last day of the first cycle. Yesterday my Hb was 120!!! It hasn't been that high in 6 years. It looks as if the Vidaza may be working already. Whites and platelets still low and oddly enough my blood pressure has fallen and was 72/48 yesterday so the nurse gave me a lot of saline as well.

Hopeful, yes, I have been tested for PNH a number of times and it has always been normal. In the first few years I felt that I had every test under the sun a lot of them came back abnormal but still didn't point to a diagnosis. I was happy (truly) when the BMB finally showed the MDS because not only was there a cause for my blood problems but it opened the door to some treatment options.

Well, I'm off to daycare and I can't wait to have the needle taken out of my port and feel free again.

Keep well.

[Chirley]

Just an update. Hb today was 130. It looks like my optimism was spot on. I find it hard to believe that after 6 or 7 years my Hb is normal. I hope it stays in normal range.

Now, I just have to work on Whites and platelets.

Bye

[Birgitta-A]

Congratulations Chirley !
Kind regards
Birgitta-A

[Gene_In_Va]

Chirley,

I am so tickled for you !!!

Gene In Virginia

[launch]

Chirley,
Awesome news! Glad to hear the Vidaza is working so quickly! We'll keep the prayers coming!!!! Thanks for your updates! Cindy

[Zoe's Life]

Chirley,

Wonderful news! I am so happy for you!

Zoe

[Chirley]

Oh well, I tried to be positive. I just had my mid Vidaza cycle blood test yesterday. My Hb has dropped 25 in 8 days so even though it was 106 I still had to have a unit of blood today because at this rate it would have been 70 ish by the time my next Vidaza cycle was due.

WCC still 0.6
Neuts 0.09
Platelets 106

So not much change there. Once again told to be very careful with infections and now need to be on anti fungals prophylactically all the time.

There's still next cycle and the one after that etc. Hope springs eternal.


Stay well everybody.

[Birgitta-A]

Hi Chirley,
Good that you manage with so low WBCs and that your platelets are OK!

It's not common that you get a positive response after one cycle as you already know - that is why the effects of drug is evaluated after 6 months.

In this article they write: “The time to response data indicate that azacitidine can have an effect at the bone marrow level as early as the first treatment cycle. However, for this effect to translate into an improvement in bone marrow function leading to clinically significant increases in peripheral cell counts, the majority of responders can require up to six cycles of azacitidine.”
http://www.jcojournal.org/cgi/content/full/24/24/3895
Kind regards
Birgitta-A