Appt Today 5/19/2010 (Wed)
 

Today Ron's WBCs were increased to 2.3 but the overall calculation (Manual DIF - Differential) was less than the required 500 count to recieve chemo today (According to clinical trial rules). We asked the Doctor if Ron had been "off the clinical trial today" would he have received chemo (Vidaza)?

Our doctor answered that he would not recommend receiving Vidaza right now, even if not on the clinical trial. He told us not to become over anxious and not to get "in a hurry" about making any decisions right now, due to Ron's current condition.

Ron feels good, he has lots of energy, and isn't run down at all right now. Today his HGB was 13.7, matter of fact, all counts looked good, although I like the WBCs to be higher. They said Ron's WBCs show progress that they are coming back up with the delay of treatment.

What Next? Next Wed, we will return to the clinic and discuss situation. If WBCs (Manual-DIF counts) allow Vidaza, then, Ron will be able to continue on clinical trial (According to today's report of what the clinical trial allows). Initially, we thought Ron was automatically off the trial if Vidaza delayed another week.

The doctor assured us he would not recommend anything that he believes would be detrimental to Ron's health. Ron's due a BMB in the next 4-6 weeks, regardless if he's on or off clinical trial, so, we'll be able to see how the marrow is behaving.

We felt today was a very encouraging appt, because, the Doctor is not worried. He assured us that this reaction to Vidaza is common (the norm), and that, when this happens, the body needs a break.

I will update all next week.
God Bless all of You, Cindy

WBCs
 

Hi Cindy,
Good that Ron's WBCs have increased and that he is feeling OK with a very good HGB :)! The neutrophils should be about 50% of the WBCs so they are lagging a little behind but will hopefully recover too.
Kind regards
Birgitta-A

Birgitta,
Thank you for the encouragement. Sometimes I get my worries ahead of the actual treatment... meaning... I'm worried if we come off clinical trial and do the "Wait and See" as was discussed....

But, I'm quickly learning, it's better to try to just enjoy everyday and not to get worked about the "What If's", etc... They will drive you absolutely nuts!

Hugs, Cindy

Ended Clinical Trial 5/26/10
 

:)It was a good ride... on clinical trail e1905. Today it was recommended that Ron no longer continue on this clinical trial. So, this will be the last post on this clinical trial for Ron. I'll start a new entry, to report on Ron's monitoring, blood counts, how he's feeling, etc. So, Ron's on "Watch-n-Wait-Pray". Will keep you all updated. As we left the clinical, it was as if a weight had been lifted from our shoulders.... we keep praying and keep Praising God's Holy Name, thanking for Direction/Guidance/Healing.

Here is what was shared with Family & Friends via email this evening:

Ron's White Blood Cells (WBCs) had improved tremendously today and while Ron was qualified to continue on clinical trial, his Doctor strongly recommended against continuing chemo treatment. Ron is in remission, and the Doctor wants to monitor Ron without administering more chemo. The doctor is concerned that, while Ron's in remission, if he continues to recieve chemo, then, it may beat his WBCs down to a point eventually, that they don't recover. He said, Ron can continue in remission and not require any additional treatment for 6 mons or even 2yrs or more. Ron's blood counts will be monitored every 2 wks to start with and then, once per month. The Key right now is, Ron feels & looks Great!

We thank God for the wonderful Medical care and Medicines made available to Ron. We openly Praise God and give him all of the Glory for Ron's healing! We are so thankful to all of you for the prayers that have been lifted up to the heavens from all over the world! (United States, Brasil, Japan, Korea, Sweden, Germany, etc.) just to name a few.... We even received a hankerchef in the mail the other day from Janice (Ron's sister)... her church had annointed it with oil and prayed over it for Ron's healing... these prayers are the reason Ron & I are making plans again..... Just to Live Life Normal Again.....

But, will we ever really be "normal again"? No... I don't believe we'll ever be quite be the same.... somehow Life and Living has an entirely different meaning now. You see, these situations make you acutely aware of just how short life is here on earth and how quickly you can go from being healthy to being ill.... and without God, I don't how we would have gotten through this ordeal.... And, about life... I just remembered a saying I once heard.... "Today is a Gift. That's why we call it the Present".

And, just to share.... These scriptures listed below (NIV) have especially touched me: Psalm 18:2 "The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold." Psalm 31:3 "Since you are my rock and my fortress, for the sake of your name lead and guide me"
Psalm 46:10 "Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth."

Cindy

Watch-n-Wait
 

Hi Cindy,
Ron has really had good effect when he tried Vidaza low dose but when his dr suggests watch-and-wait due to low WBCs then everything must be less complicated. As you know I prefer watch-and-wait with high quality of life since I got my dx 4 years ago.

Hope Ron's WBCs will continue to increse when he isn't taking Vidaza!
Kind regards
Birgitta-A

Birgitta,
Just keep Ron in your Prayers.... I too hope the same and keep the faith that he will do well. His Doctor actually wanted to go to the "watch and wait" because of the slow recovery of WBCs ( 4 wks ) Delay of next cycle of treatment. He said that, over time, his experience showed the recover time would be longer and longer, and he didn't want to push Ron's body to the point it did not recover. He didn't want to do more harm than good, just for the sake of keeping Ron on cycle...

Ron's body had taken the chemo harder the last two cycles. Seems he felt more effects of the chemo than before. My belief is, he felt so very bad in the beginning (tired, anemic, short of breath, slightly nausiated, and nightly fevers), so, as the Vidaza did it's magic, Ron's body was improving and the blood was behaving over time. But, once he had achieved the fairly "normal ranges" of blood counts, his body started getting run down by the same treatment that restored his blood counts. It's a double edged sword I suppose.

4 months ago, we were afraid of the watch and wait. Today we are not. We will take one day at a time... right now, Ron's quality of life is much better. He needed the Vidaza to bring him to this point. The Doctor is hopeful Ron's counts/remission status will remain for at leat 6 mons to 2 yrs. We keep our faith and we continue to pray...

I will keep all of you posted....
Thanks for always being there Birgitta!

Cindy

Vidaza
 

Hi Cindy,
Yes, as far as I understand all chemo are double edged swords. We can only hope that we get more positive effects than negative since all cells in the body are affected.

I looked at the new abstracts about MDS from the European Conference but the reseachers have not yet managed to find out what kind of cytogenic aberrations that will tell us who will have good response when they get Vidaza. It is still only Revlimid for -5q and ATG for a subgroup of RA patients.
Kind regards
Birgitta-A

Revlimid
 

Birgitta,
The interesting thing we learned when going to Moffitt Cancer Center, was, Revlimid will only help "Anemia" for the -5q deletion patients, but, it wouldn't "Fix" the -5q deletion aberation in the marrow. That's why, when we were offered Revlimid, once Ron's aberations were reduced to the -5q deletion, and we went to Moffitt for a second opinion, we were told this bit of information. And, we were reminded that Ron's not currently showing signs of Anemia, so, the Revlimid would ineffective.

I always thought the Revlimid would work on getting rid of the aberation itself. Do you have any info on this?

Thanks, Cindy

Revlimid
 

Hi Cindy,
As far as I understand Revlimid (lenalidomide) can increase all kinds of blood cells. In this abstract they report that "treatment significantly improved the clonogenic potential of bone marrow erythroid, myeloid, megakaryocytic colony-forming cells" - that is early red blood cells, white blood cells and platelet produsing cells.
http://www.ncbi.nlm.nih.gov/pubmed/19773257
Kind regards
Birgitta-A

Thanks again Birgitta,
We appreciate the information... Cindy ;-)