Blasts in blood

[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]

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

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]

Originally Posted by 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

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]

Originally Posted by 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

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]

Originally Posted by 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

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