Blasts in blood

[billyb]

How high can the blasts in your blood go and function ok, last month we were at 10% and last week they jumped to 16%, they have been staying at 3% to 5% for about 5 or 6 months, not sure if the Decitibane is not working any more need a few mor blood tests to determine that, Tina has been more tired than usuall the last week or so

[Birgitta-A]

Hi Billy,
My doctor has told me that almost all patients with leukemia or similar diseases have blast cells in peripheral blood. If they are more than 1% the disease is getting more aggressive. I think you are right when you suspect that Decitabine has less effect.

Patients that have been treated with Vidaza or Decitabine should look for clinical trials with new drugs if Vidaza/Decitabine not are working.
Kind regards
Birgitta-A

[billyb]

We got our differential back Friday July 5th after a week of Decitibane and Blasts in the Blood have risen to 17%...Unbeliveably Tina was feeling allright execpt for a little tiredness ( it usually dosent hit her for a week or two after treatment )...Not the results we were hopeing for...so we said the heck with it...we pack up the truck and headed to the coast... hit the beach and fished for baby sharks

[MagicBob]

Originally Posted by billyb

We got our differential back Friday July 5th after a week of Decitibane and Blasts in the Blood have risen to 17%...Unbeliveably Tina was feeling allright execpt for a little tiredness ( it usually dosent hit her for a week or two after treatment )...Not the results we were hopeing for...so we said the heck with it...we pack up the truck and headed to the coast... hit the beach and fished for baby sharks

BillyB, we sure go through so many disappointments as we travel down the Road of the Unknown. That was a great idea that you and Tina went to the beach, just be careful with the sharks.
Our prayers are with you guys, and wishing a large reduction with the Blasts.

MagicBob

[billyb]

Thanks, Bob...the sharks ar'nt but about 1 foot long, Tina cought a few of them, a sea bass and somethig else.....Me, I cought a sunburn ( lol )....Bob we have been dealing with active cancer for a long time, our outlook is .....You Either Beat It Or You Dont.....Tina and I dont want to live with regrets, by saying we should have done this....we should have done that, Dont get me wrong we fall into the what the hell did we do to deserve this mode, Its not allways easy, Everyday is a miricle for us, statistically cancer should have won a long time ago, but it hasent... So we have been given the oppertunity to do more things, and we chose to do the best we can......Thanks, Billy

[Heather8773]

Billy God bless you and Tina. That is a beautiful outlook to choose. It's hard for us too sometimes. But y'all are right.
I love y'all had a great time fishing! Sounds fun!

[Cheryl C]

I hope Tina's blasts reduce really quickly. Will look forward to further news. I truly admire your positive attitude and always look forward to your posts. That fishing episode probably did you both a lot of good. Think of all the positive ions that you take in at the beach!

When my blasts dropped I took leave from my job and my husband and I were on the road in our Toyota Hiace campervan within 5 weeks. I've now retired and we're still on the road travelling around Australia, though we did do a house-sit for 3 months earlier this year while I had my next biopsy, etc. Every now and then I feel unwell and as though my blast count is increasing, but then things seem to settle down and I feel quite normal again. I think MDS can be like that.

All the very best to you both as you fight this new battle. You are in my prayers.

[billyb]

Thanks Cheryl, we had to do a house sit before the summer, we were on IV antibiotics so it was kind of hard to do things, but when school let out ( we have a 9 year old son ) and my worked slowed down we took the opportunity to take off for a minute. Australia must be beautiful this time of year, I hav'nt been on here as much as I used to because we were having some complications a month or two ago, but things are stabilising, so thats a good thing, remission or transplant is not an option for us .....so we have to think differently than some folks.....Thanks for the prayers......Billy

[billyb]

We have decided to try going on a 10 day cycle of Decitibane, since our blasts in blood have risen to the high 30's and our wbc is almost 11, have to try to slow things down

[Cheryl C]

I pray that this treatment will be effective, BillyB and Tina. You are both an inspiration to all of us on this forum.

[PattiDean]

Originally Posted by billyb

We have decided to try going on a 10 day cycle of Decitibane, since our blasts in blood have risen to the high 30's and our wbc is almost 11, have to try to slow things down

Dean and I will both be keeping you and Tina in our thoughts and prayers. I agree with Cheryl, you are an inspiration to us all.

Lots of love, hugs, faith, hope and prayers Billy and Tina.

[billyb]

Just needing some prayers......were not doing as well as we would like

[MagicBob]

Billy, my wife and I are praying for you both and that God blesses and comforts you all at this difficult time.

WITH ALL OUR LOVE,

Bob and Dru MagicBob

[PattiDean]

Originally Posted by billyb

Just needing some prayers......were not doing as well as we would like

Dean and I are also keeping you both in our prayers. (((HUGS)))

Patti and Dean

[bebop]

keeping you both in my prayers hon.

[LizR]

Billy and Tina,

Sending you Prayers, Hope and Hugs.

[Chirley]

Billy and Tina,

I won't pretend to believe in any God so I can't send you prayers but I want you both to know that you are both in my thoughts a lot. I admire both of you for your attitude and courage.

All my best wishes.

Chirley

[Sally C]

Dear Tina and Billy,
As others have said - you are an inspiration to us all.
I know there is power in prayer - and you both are in mine.
God Bless,
Sally

[DebS]

Billy and Tina,

You are in my thoughts and prayers as well. Everyone on this forum is so thoughtful and caring. You have a LOT of prayers going for you!

[billyb]

Thanks Y'all, Tina hasn't been feeling well the last week or so and the transfusions haven't been holding to long, platelets have never lasted, but they have a short life span anyway, but we used to get 7 to 10 days out of 2 bags of blood, last week or two we get about about 3 days, we are hopeing it is the 10 day cycle complicating things, you just don't know sometimes with this disease. Anyway we appreciate all the thoughts and prayers.....Billy and Tina

[billyb]

The 10 day cycle brought the blasts in the blood down from 37% to 7%, but the 10 day cycle was to much, so we went back to the 5 day cycle, just finished 5 day today but the blasts have been slowly creeping up, there we at 11% Thursday, Tina had pricked her finger on something and now it is infected, so we did a bag of IV Augmentin today and have to go in tomorrow for another bag, we wanted to put off blood and platelet transfussions Monday because it was a holiday, buy they said it not a good idea because Tina has had Severe Thrombocytopenia. In 8 months ( 32 weeks ) we have had 44 tests ( we have had more tests than that, but Im not counting the times we were hospitolized ) and our platelet average is 3, so Im finding myself starting to worry more, dont get me wrong we have our good days, and we had the best summer in our whole life, so even if setbacks are happining in our life I try to keep it on a positive note, what Im saying is if you read my threads and you are new, dont nessacearly think what is happining to us is whats is in store for you, it happens this way for some people and some not, I have plenty of people I know and associate with that have over come Leukemia and have gone into remission, dont try to compare that will only get you down. everybody is different, remember there are a lot of factors that determine how someone does, I am allways thinking and praying for everybody here and I appreciate all the thoughts and prayers ya'll send us.....Billy

[Chirley]

Billyb,

I love this...

we went back to the five day cycle
we did a bag of IV
we have had 44 tests

Tina is a very lucky person to have you by her side.

[Whizbang]

billyb,

I'm wondering if you've/(Tina) tried Vitamin D3 for the low platelets???

I read on hear that it's good for PLTs so I figured I'd try some (liquid dropper style)...

Not I know too much isn't good for you since it's fat soluble, and I typically never take the same vitamin every day (usually every other day)...

Well my PLTs dropped from 90 to 50 a week after Dacogen, three days before my 2nd weekly blood test, I tried 2500IU D3, for three days straight, then I returned a PLT count of 60... I stopped taking the D3 figuring it worked a little bit, and started taking my multivitamin / B complex again every other day (centrum Adult for men / Stress B complex)...

Not sure if it was the Dacogen or Vitamin D3, but after my 3rd weekly blood test, my PLTs jumped to 209...

I'm not saying that the D3 did it, but my hematologist was astounded, could not believe his eyes...

God bless, and be well...

[PattiDean]

Originally Posted by billyb

The 10 day cycle brought the blasts in the blood down from 37% to 7%, but the 10 day cycle was to much, so we went back to the 5 day cycle, just finished 5 day today but the blasts have been slowly creeping up, there we at 11% Thursday, Tina had pricked her finger on something and now it is infected, so we did a bag of IV Augmentin today and have to go in tomorrow for another bag, we wanted to put off blood and platelet transfussions Monday because it was a holiday, buy they said it not a good idea because Tina has had Severe Thrombocytopenia. In 8 months ( 32 weeks ) we have had 44 tests ( we have had more tests than that, but Im not counting the times we were hospitolized ) and our platelet average is 3, so Im finding myself starting to worry more, dont get me wrong we have our good days, and we had the best summer in our whole life, so even if setbacks are happining in our life I try to keep it on a positive note, what Im saying is if you read my threads and you are new, dont nessacearly think what is happining to us is whats is in store for you, it happens this way for some people and some not, I have plenty of people I know and associate with that have over come Leukemia and have gone into remission, dont try to compare that will only get you down. everybody is different, remember there are a lot of factors that determine how someone does, I am allways thinking and praying for everybody here and I appreciate all the thoughts and prayers ya'll send us.....Billy

Billy, you are so supportive and caring to everyone on the forums, even though you and Tina are going through so much.

Dean and I have had nine hour days this week, labs, transfusions and chemo each day, and we are both feeling overwhelmed. We are thankful the week end is here and we hopefully have three days away from the doctor, labs, hospital. You and Tina don't have that. :-(

We try everyday to keep each of you in our prayers. You are in our thoughts!

Sending lots of hugs, love, faith, hope and if it's okay, some smiles your way.

Patti and Dean

[billyb]

Thanks ya"ll,