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]

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]

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]

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... :eek:

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]

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,

[gramous]

hello Billy and Tina,

so we have the inverse problem with platelets, ...my boyfriend had four months ago 2 million 2 hundred platelets :-( and naturally anemia (RARS-T)... the platelets count increased a lot when he eats a lot of curcuma (1g/day) and royal Jelly (1 g /day)... but you have to look at there is not interference problems with Tina's chemotherapy.
You're in my prayers and I wish you the very best.
Keep courage and faith.
Friendly regards
béné

[MagicBob]

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

Hi Billy and Tina,

You guys without a doubt are the biggest fighters I have ever known. And your faith sure stands tall.

There are lessons to be learned from how you all have handled set-backs; this truly demonstrates your faith, hope and prayers. So many of us have seen or experienced the roller coaster ride of this baffling disease; and we hang on for another new high.

That sure was a great drop with the Blasts, hopefully they will stop moving back up and start to see a miracle in the making.

Our Love and Prayers to you all,

Bob and Dru MagicBob

[Cheryl C]

It's always lovely to see a post from BillyB and Tina on the forum. You are such courageous people!

I've been taking Vit D3 regularly for a while now - heard it was a good thing to do for MDS but didn't realise it could specifically help platelets. Mine haven't dropped below 120 this year so perhaps that's why.

[billyb]

Thanks, We have tried all sorts of vitimans, including Ostero-K, for some people those supliments work very well, unfortuneatly Tina's bone marrow has alot of damage due to prior chemo and radation along with long term Herceptin use for Breast Cancer. There comes a point and time when the things you read and are told unfortunatly are true, its just so very hard to digest sometimes. We will never give up hope, for without hope we would surely go insane.

[DebS]

Billy and Tina,

Keep fighting the fight and hoping the hope! You have TONS of support here!

God Bless!
Deb

[billyb]

I know ya'll have been praying for us if you could say a couple extra, Tina had to be put in the Hospitol, we have an infection that seems to be getting worse and they want to monitor her and she is upset because it is our sons Birthday this weekend and we had to postpone it.... Thanks a Bunch...Billy

[bebop]

praying hon. maybe she will be all better by the weekend. I hate mds!

[slip up 2]

billy b .....there is not a day goes by that i don't think of you all fighting this disease....patients....spouses....caregivers....kate

[Sally C]

Dear Tina and Billy,
Will say extra prayers for you both. Your marriage, love and strength has been an inspiration for all.
God Bless always,
Sally

[LizR]

Hugs and Prayers from us. Being ill is tough enough without worrying about disappointing your kids. You pick us up when we're down and we want to do the same. Feel better real soon!!

Liz and Bob

[Susan L]

Hi All - Doctor called today with change of plans - Holding off on the 4 to 6 wks of chemo - instead pushing ahead to find a donor then the normal amount of chemo and the transplant. Doctor feels that the fibrosis is making the biopsy difficult to read and doesnt believe the blasts are as high as they show. (?) I reallydont understand that part - but - I am for going ahead and finding a donor - I was wondering how that was going to work out - Question - any ideas or comments on how long it has been taking to find a donor thru the registries? Doctor said it can take two months or more. Wondering - how long ---- Hope all is holding on and things are doing well :-)

[billyb]

Susan maybe there is scar tissue or inflammation on the slice ( BMB ), and its hard to read, and the doc is holding off on the chemo because he dosent feel the need to knock the body down before its nessassary, it all could be a timeing issue, but if ya"ll arnt in warp speed to get things done, that could be a good thing, I belong to another site ( Daily Strength ) and in the AML section they have a thread called Team Transplant they know all about transplant stuff....were praying for ya.....heck were neighbors...lol......Billy

[susanML]

Susan maybe there is scar tissue or inflammation on the slice ( BMB ), and its hard to read, and the doc is holding off on the chemo because he dosent feel the need to knock the body down before its nessassary, it all could be a timeing issue, but if ya"ll arnt in warp speed to get things done, that could be a good thing, I belong to another site ( Daily Strength ) and in the AML section they have a thread called Team Transplant they know all about transplant stuff....were praying for ya.....heck were neighbors...lol......Billy

Hi - I am fine with waiting till we get a donor - I feel its like you said about not knocking me down till its time - That is kindof the way he was saying it - also the scar tissue is way too much he said. (Fibrosis-I think) and thank you for the other side - I am going to check it out too. That is so cool we are neighbors - I live outside a small town called Bowman - we are out in the country and I absolutely love it. Should have done that years ago. Happiness to you all - Susan

[billyb]

Thanks, ya'll...They think Tina has Phlebitis so they are bombarding it with Cefepime and vancomycin, and if she does well tbey will let her come home Saterday and we can do 7 to 10 days of IV antibiotics at home....Billy

[Chirley]

Hi Billy, did Tina get it from an IV or a blood test? Glad she's doing better.

[billyb]

At first they thought it was from her finger because it has been infected, but there were no streaks running up her arm so there guessing it came from where they draw blood, Tina has a port but they dont like drawing blood from there so we are guessing the cbc test site, hard to say with Tina she is on different anti fungals and antibiotics its hard for them to pin point, sometimes I think she has an infection but wont get a fever because of the meds so I kind of have to watch and see when she is acting different to tell if she is starting to get sick

[Susan L]

At first they thought it was from her finger because it has been infected, but there were no streaks running up her arm so there guessing it came from where they draw blood, Tina has a port but they dont like drawing blood from there so we are guessing the cbc test site, hard to say with Tina she is on different anti fungals and antibiotics its hard for them to pin point, sometimes I think she has an infection but wont get a fever because of the meds so I kind of have to watch and see when she is acting different to tell if she is starting to get sick

You are so good - hope Tina gets better quick. We are off to Atlanta for blood tests - wishing you the best.

[DebS]

Everyone is praying and pulling for you Billy and Tina. Here is hoping that you find out some good news!

God Bless!
Deb

[MagicBob]

I know ya'll have been praying for us if you could say a couple extra, Tina had to be put in the Hospitol, we have an infection that seems to be getting worse and they want to monitor her and she is upset because it is our sons Birthday this weekend and we had to postpone it.... Thanks a Bunch...Billy

We are with you both, and will continue praying that God comforts you all at this difficult time.

Our Love and Prayers,

Dru and Bob MagicBob

[billyb]

Well we seememed to overcome the one infection but we had to stop early because our antibiotic levels were getting to high for outpatient use, but the finger and arm cleared up, but now Tina has these bumps on a lot of her body and they think it is some type of viral infection ( hopefully its not cutis ) so we are going to try a new antibiotic. The blasts in the blood have creep up to 18% again , but we start treatment on Monday, hopefully they will trend back down, we are going to stick with Decitibane till it dosent work any more, we can live with swings of 5% to 25% as long as no other problems complicate things, we are keeping our head up and keep the running joke of if we spend anymore time at Emory, we will have to start getting our mail forwarded there....Love and prayers to all....Billy and Tina

[Chirley]

Thanks for the update Billy.

You and Tina have been in my thoughts.

Hope the bumps go soon.

Chirley

[susanML]

Praying for you guys - you are such a tower of strength!

[DebS]

You two deserve to get over all of the bumps--and soon!!!!

Hugs and prayers!

Deb

[pastalover]

Hi,
Just wanted to say good luck to you in your quest for answers. Its been pure hell for me to obtain any real answers to my odd ball blood problems & sickness. I also developed skin lesions. After 2 gp's went to derm. Which didn't listen to one dang word about my 3 blood diseases. So..the derm doc did not test the skin biopsy correctly and got nowhere again, but a $700 bill. I believe all these doctors need to be re-trained to listen to there patients. I hope they find your cause of your problems. The end of the pier is looking pretty good at times to me.

[billyb]

Pasta, I understand how you fell, this disease effects everone differently, you can put 2 people side by side same diagnosis, karyotypeing, performance status, ect. and they will respond differently, eventhough diagnosis is the same the mechanics of the human body are different. I felt a lot of pain in your last sentance in your responce to my post and I wish there is something I could say to ease your pain, Leukemia Sucks. We have been battleing cancer for some time now, I went out last week and bought ( with the banks help ) a 1989 Corvette Convrtable. You see Tina hasn't been doing well lately, and when I told her I was getting it, she wasn't real happy, but I knew once she got behind the wheel with the top down tooling down the road she would feel the weight of the world lifted off her sholders. As we were driving I looked at her out of the corner of my eye and I havent seen her smile like that in a long time, you see our time together here is limited, I know and understand what lies ahead, as I sit here writing this Tinas mother is takeing her to the hospitol, we have had a viral infection for a couple weeks, and tonight she started running a feaver, ( we have a 10 year old son, so its easier for me to stay here ) hopefully like all the other times it wont be to long of a stay, but I allways have a fear when this happens this might be the time she dosen't come home, anyway I appreciate all the prayers it helps tremendously......Billy

[susanML]

Hi - Billy and Tina - I said it before and I will say it again - you both are such an inspiration to all of us. This is a very hard disease and you hit it on the head - two people with same disease - totally different responses.

Pasta - I too have felt the same way in the past few months. I have developed the most unbareble pain in my stomach and cant figure what it is. My bones throb that I just cant take it - but I am holding on for my donor - I just feel things will be different -

Hang in there - and Billy what a wonderful thing you have done with the car. I am sure she is very happy she is getting to ride it.

Love to you all. susan

[DebS]

Billy,

You are the BEST!!! What that car has to mean to Tina right now.

Here's hoping the news from the hospital is good and the stay is short.

God Bless!

Deb

[Sally C]

Dear Tina, Billy, Pastalover, Deb, Susan, MagicBob - and anyone else I may have missed,
There just really aren't enough words to express my admiration for all of you - your determination and grit in the face of your pain, your health problems and your fear. The upbeat things you all say and do is an example of bravery and courage that few people have - all the while doing your best to support those who need it on the Forums.
I wish you God's Blessings, Peace and Comfort in the days ahead.
God Bless you all,
Sally

[Bambam]

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

Blasts in my blood rose quickly from 4% to 33%. Anymore than 20% is classified as Leukemia. Now I have MDS and AML. I hope you get some answers soon.

[pastalover]

Hi everyone... I am so sorry to vent like I did. I sometimes just can;t hold all this in anymore. My spouse does not let me vent at all. It builds up and my frustration goes threw the roof. I know I need to be thankful... I wish none of us would suffer in any way. Thanks everyone for the kind words. My dear girlfriend died last week/colon cancer. She was such a trooper and as sweet as pie through her whole ordeal. I told my husband this week...I don't want to die a angry (b(witch).. I am not on any treatments & feel like a bomb is waiting to go off. What the heck are they waiting for? Who knows..the doctors sure don't. Thanks again...BE WELL!

[billyb]

Pastalover.....you can come on here and vent anytime you want to........At some point and time we all have to let it out......If it helps......vent on....thats one of the reasons were here for you

[billyb]

Blasts in my blood rose quickly from 4% to 33%. Anymore than 20% is classified as Leukemia. Now I have MDS and AML. I hope you get some answers soon.

BamBam if your a regular person your not supposed to have any blasts in the blood....Going ron 4% to 33% is an indicator that treatment may not be effective anymore, have them do a differential every week for 6 weeks, if your on a 28 day cycle of treatment you can see whats going on, or ask for another BMB or better yet a FISH Test, that will determine the best route for tratment.....Billy

[billyb]

We have come to end of the road.....I will be bringing Tina home, and Hospice will come to the house, we had a long hard battle but it was worth it, this past summer was the best ever...Sorry I'm at a loss for words right now, I concider everyone on here as part of our family, and wanted to keep ya'll in the loop....Billy

[pastalover]

Billy,
I am so sorry to hear about your news. I wish you the very best.

[Neil Cuadra]

Billy and Tina,

You've been courageous from the start, despite odds that were stacked against you. I hope the peace you'll both have at home will sooth the mental and physical pain from the medical battle.

[LizR]

Billy & Tina -

I'm so sorry to hear your news. You have both been a part of so much of my time here on the forum with your positive outlook and information. We will certainly keep sending our prayers to your entire family.

Here in my city I see Corvette convertibles often and every time I see one I smile and remember Tina's. Take a ride when you can, enjoy it and know we are thinking of you.

[susanML]

I am so saddened to hear of the news. You both have been such in inspiration --- I am sending my love and prayers -

[rkp]

Billy,
I'm so sorry to hear this news.You have been an inspiration to everyone on this forum and I really appreciate the helpful inputs given by you to eveyone here.
Hugs and prayers ......

[Birgitta-A]

Dear Tina and Billy,
How sad that Tina at last lost her long fight!
Warm regards to you both!
Birgitta-A

[Honeybun]

Unbreakable

Will you make me a daisy chain necklace, with flowers freshly picked?
Stolen from a hillside, near a little running brook

One with bright yellow petals, as golden as the sun
A colour that smiles with happiness, laughter and lots of fun.

Will you nurture the little seeds, with attention and with care?
Just a little time each day, is all that’s required for you to spare.

From the foundations the seeds will grow, reaching for the sky.
A base that provides the nutrients to survive as the days go by.

From a little bud, a beautiful flower will take on form.
Waiting to burst into bloom, from the seeds that were carefully sown.

It’s petals kissed by the morning and covered lightly in a shimmery dew
They’re natures little teardrops that help to cleanse and to renew.

Thread each flower carefully, to form each delicate link
These bind this chain together and provides the strength within.

This chain now forms a circle. That represents never ending love.
One that will last forever and blessed by the angels above.

Will you make me a daisy chain necklace, that you promise will never break.
I know when you place it around my neck, I have found my true soul mate.

`·.¸¸.·´´¯`··._.··»-(¯`v´¯)-» written by Honey »-(¯`v´¯)-»`·.¸¸.·´´¯`··._.·

For Billy and Tina...Unbreakable soulmates

[Sally C]

Dear Tina and Billy,
I am also very saddened to hear this news. Tina fought such a courageous fight with Billy fighting just as hard beside her. Rarely do you see such devotion.
I pray for God's Comfort and Peace for you both.
God Bless,
Sally

[Lifeguard]

Billy and Tina,
I'm so sorry to hear your news. I do not post often, but I wanted to say that your posts have been inspirational and that Tina's fight for life has been remarkable.
Lifeguard

[DebS]

You have fought the long, hard fight. I will never forget your posts. You were always one when you said "our counts are down." You were one with Tina and one with the diseases.

All of our thoughts and prayers are with you. May you find comfort and peace in these remaining days.

God Bless you both!

Deb

[Chirley]

I'm so sorry to hear this Billy.

I hope you have time to say all those things that have not been said. You need to know that you have done everything in your power to keep Tina happy and comfortable and by doing hospice you are continuing that loving care.

There is nothing better in life than to be with people who love you and you have made this come true for Tina.

All my thoughts are with you both.

Chirley

[Whizbang]

I don't think two people could have been happier 'til this terrible disease came. I can't fight any longer... What I want to say is I owe all the happiness of my life to you. You have been entirely patient with me and incredibly good. I want to say that – everybody knows it. If anybody could have saved me it would have been you. Everything has gone from me but the certainty of your goodness. I can't go on spoiling your life any longer. I don't think two people could have been happier than we have been.”
― Virginia Woolf

[MagicBob]

We have come to end of the road.....I will be bringing Tina home, and Hospice will come to the house, we had a long hard battle but it was worth it, this past summer was the best ever...Sorry I'm at a loss for words right now, I concider everyone on here as part of our family, and wanted to keep ya'll in the loop....Billy

Billyb, you and Tina are awesome, as you both have given so many of us hope to continue our battles with this baffling disease.

Dru and I pray that God comforts you and Tina during very difficult time.

MagicBob

[gramous]

Tina, Billy,

I keep you in my thinking. You are both an exemple for me because we are the same age and we are going in the same ordeal. Keep courage. hugs and friendly regards.

[Lbrown]

Thinking of you, Tina & Billy.

Deb

[Cheryl C]

BillyB - we haven't heard from you for a while, and am wondering if you are going through a tough time at present. I am thinking of and praying for you and Tina.

[DebS]

Billy,

I echo Cheryl's comments. Thinking of you and Tina.

Deb

[Al's Wife]

Billy,

You have been there for all of us and hope we can be there for you. Tina has fought such a courageous battle and I know she is thankful to have had you by her side.
God bless you and comfort you.
Peace,

[bebop]

thinking of you both right now hon. praying for peace.

Elaine

[billyb]

Thanks everyone..............Billy

[Lori Patrick]

Prayers for strength.

[billyb]

Wanted to thank everyone, for thier support thru the last year, allthough Tina and I knew what we were up against we shielded everyone around us from what we talked about with our Leukemia Doctor the very first time we met with her, and I would try to keep things on a positive note when posting on here. How I would like people who read this thread and the other one I started with is, we were not the norm when it came to an AML diagnosis, so dont use Tina as a guage when it come to yourself or someone you know, the odds were stacked against us from the start, even though we didnt understand why and were angery at times, we knew we were truly blessed with what time we had, the last year has been hard, but we chose to live it up while we had the chance, the road ahead will be difficult, but me and my son will get thru this. Tina passed away Tuesday October 8th in the early morning hours, she was sleeping and at peace. I want to thank ya'll for all the love and suppot......Billy

[Whizbang]

May she rest in Peace...

Know that you made the best of the time you had, best wishes to you and your son.

God Bless...

[Neil Cuadra]

Billy,

I'm very sorry for your loss. You and Tina knew what was most important: to cherish your remaining time together. You made the most of the poor hand you were dealt.

Your life is entering a new phase. Even knowing it was coming can't make it easy or less sad, even for a positive person like you. I hope the inner strength you've showed us and memories of your best times with Tina will ease the pain and carry you forward.

[Chirley]

I'm so very sorry Billy.

I'm pleased for Tina that she passed in her sleep and in peace.

I wish you strength and comfort for the future.

[Birgitta-A]

Dear Billy,
Now Tina has at last found peace. You supported her in the very best way during her severe diseases.
Warm regards
Birgitta-A

[DebS]

Billy,

My heart is so heavy for you. You couldn't have been a better caregiver, husband, or father. You always have had such a positive attitude when faced with unbelievable obstacles. May that attitude carry you through this difficult time.

Know that you always have support here. There are so many of us who have followed your story and who prayed constantly for you and Tina and your family.

As others have said, she is at peace now.

God Bless you!

Deb

[susanML]

Wanted to thank everyone, for thier support thru the last year, allthough Tina and I knew what we were up against we shielded everyone around us from what we talked about with our Leukemia Doctor the very first time we met with her, and I would try to keep things on a positive note when posting on here. How I would like people who read this thread and the other one I started with is, we were not the norm when it came to an AML diagnosis, so dont use Tina as a guage when it come to yourself or someone you know, the odds were stacked against us from the start, even though we didnt understand why and were angery at times, we knew we were truly blessed with what time we had, the last year has been hard, but we chose to live it up while we had the chance, the road ahead will be difficult, but me and my son will get thru this. Tina passed away Tuesday October 8th in the early morning hours, she was sleeping and at peace. I want to thank ya'll for all the love and suppot......Billy

I am so very sorry for your loss - you gave such wonderful support - and I truly hope that you get all the support you need in raising your son. I am just at the beginning of finding my match - I have also been dealing with this for almost 20 yrs. First the aplastic anemia, then MDS, now evolving into AML - you both have shown me to stay positive and find the happiness in life that is there. I wish you much happiness in your life. Susan

[Sally C]

Dear Billy,
I am so sorry to hear this news. But at least your Tina is now at peace.
May God comfort you and your son as only He can.
God Bless,
Sally

[Chad S]

God bless you Billy.
You have handled this with an admirable strength and dignity.
And you have been a good role model for those of us that follow you.
Chad

[slip up 2]

Billy....so very sorry....kate

[rkp]

Very sorry for your loss.
May God give you and your son courage to face this.
Your support for Tina through out her ordeal and your positive attitude is inspirational.

-RP

[DanL]

Billy,

Tina was a fighter and you were the best support she could have. I am very sorry for your loss.

[PattiDean]

Billy, I was so sorry to see your post this morning! You and Tina have been an inspiration to each of us.

There are no words of comfort that I can find at this moment, but please know you and Tina will be in my thoughts and prayers.

I wish I had enough hugs to send your way to help ease the pain.

Patti

[susanML]

I hope you are being helped during your time also. I think of you often and wish I could make things better for you and Billy. You both have so strong for your mates. Wishing the best for you both.

[Lbrown]

Billy,

I am so sorry to hear about Tina.

Deb

[Darice]

Billy,
I am so very sorry to hear about the passing of Tina. My thoughts are with you and your son.
Darice

[Cheryl C]

Dear Billy

My heart aches for you. I felt that I knew Tina personally through your posts. My thoughts and prayers are with you and your son. May God continue to comfort you and give you peace. I believe that this world is not the end and you can expect to see your darling Tina again one day.

No one could have done more for Tina than you did. Thank you for your wonderful posts which have encouraged all of us. I send you both an online hug.

[Al's Wife]

Billy,

I just got back in town and was saddened to learn of Tina's passing. My thoughts and prayers are with you and your son. I could tell by your posts that you were the best of caregivers for Tina.
Having been widowed years ago at the age of 25 and having two small children at the time, I can tell you that time is the best healer. And while you never forget, the pain does ease and life does go on.
I am glad you have some great memories with Tina during these difficult years of illness.
She was so young but a real fighter.
God bless you and I hope you will keep in touch.

[gramous]

Billy,

I'm so sorry to hear for Tina. You're in my thinking, you and your children. I wish you a lot of courage. big hugs. béné

[Lifeguard]

Dear Billy

I'm so sorry to hear about Tina's passing. You will be in my family's prayers and thoughts.

Rachael

[Bambam]

BamBam if your a regular person your not supposed to have any blasts in the blood....Going ron 4% to 33% is an indicator that treatment may not be effective anymore, have them do a differential every week for 6 weeks, if your on a 28 day cycle of treatment you can see whats going on, or ask for another BMB or better yet a FISH Test, that will determine the best route for tratment.....Billy

Dear Billy, I'm saddened to hear that Tina is now receiving hospice care. I hope that the care you both receive is as caring and accessible as is mine. My Vidaza was stopped after four months after biopsy showed increased blasts. I had such awful side effects with it, so it was a relief to stop. After another ER room with that awful debilitating gut pain (since relapse last March) I was admitted where a CT scan (the latest of many that showed nothing) started to show swollen lymph nodes in my abdo, as well as thickening between the large and small colon - the leukemia had moved into that area and I suspect is now in my CNS. I was discharged one week later, after IV fluids, transfusions and antibiotics for an opportunistic UTI and declared palliative. I am now on Hydroxyurea, which lowers my counts even more dramatically and I'm close to calling it a day with the TRX. I'm not sure I can take any more. As Tina's loving Caregiver, I realize how hard this must be for you too, as I watch my own spouse struggling to cope with this, the challenge of all challenges. I send you love, peace and understanding and I send Tina love, peace and freedom from pain. Thinking of you both, bb