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MDS Myelodysplastic syndromes

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  #1  
Old Thu Sep 4, 2014, 05:37 PM
amyangel amyangel is offline
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My 27 yr old daughters MDS and SCT JOURNEY

Hi Marrow ,

I thought each day, week , month I would try to type a little something about my daughters journey with her MDS and SCT .
She finished her 4th cycle of Vidaza and her counts have gone rock bottom already . Platelets they dropped to 32 the first week after Vidaza was done, but they are always the first numbers to come back up.
She is still needing mag. and blood once or twice a week .

Testing that will need to be done before SCT for BMT Doctor and Insurance company .
We got permission from the insurance company to do outpatient SCT and we will staying at a apartment near the hospital . We will have to go to the hospital everyday . For fluids , Blood ect.

August 29, 2014
BMB
August 29, 2014
MRI was done to make sure that her Toxoplasmosis was gone from her brain. Praise God the report is back and everything looks good !
Sept. 10 Dentist X-rays and mild teeth cleaning

Sept 11 and 12 ,2014
EKG, chest x-ray , Muga scan PET , Pulmonary function test , Rad/onc consult , Psych / social appoinment , Talking with transplant codrdinator , financial Liaison , social worker , Busulfan test dose , consent conference / pharmacy , line placment / removal . WHEW!!!!
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6

Last edited by amyangel : Thu Sep 25, 2014 at 11:52 PM.
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  #2  
Old Thu Sep 4, 2014, 07:00 PM
Neil Cuadra Neil Cuadra is offline
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Sue and Amy,

I wish you the best of luck. Let us know how the MRI turns out.

By "mag" do you mean magnesium? If so, it's probably worth mentioning that my wife used to get magnesium through an IV almost every week, which took hours each time, until we learned that you can take it orally just as easily and not need all that time for an infusion.
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  #3  
Old Fri Sep 5, 2014, 08:57 AM
amyangel amyangel is offline
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Hi Neil
Yes I always type Mag . short for Magnesium ... My daughter is cognitively delayed and can not take pills by mouth Magnesium can not be crushed because of it's slow release .

Trust us would would much rather take it by mouth !
Thank you for your best wishes
We have God on our side no matter which way this road takes us .
Life isn't good without God !


August 29, 2014
MRI was done to make sure that her Toxoplasmosis was gone from her brain. Praise God the report is back and everything looks good !
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6

Last edited by amyangel : Fri Sep 5, 2014 at 09:15 AM.
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  #4  
Old Fri Sep 5, 2014, 01:19 PM
rar rar is offline
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When I was on immuno suppressants after transplant. They seemed to leech magnesium from my body. Prior to transplant I was on 1200 mg of mag. I was in the upper portion of the normal range. After transplant I was on 4000 mg IV and still below limit. This lead to restless legs and cramps. To get this much magnesium orally would have been 13 each of the 400 mg tablets. I was assured that this would cause big time diarrhea and it would be difficult to spread them out to get absorption. Since my mag level was below limit I convinced them to administer the mag daily before doing the testing. So I was getting my daily infusion while waiting for the lab results. This made for more efficient use of my time.

At day +63 my mag level is just 1.5 on 1600 mg of mag. Doctor says any more would not be absorbed. I still have RLS which is being treated effectively with oxycodone.

For me the worst was the two weeks after transplant. I felt really crummy, overwhelming fatigue, nausea, and couldn't eat. After that I started feeling better.

I am not sure how you daughter will cope with medication. After transplant I was taking 34 pills a day. Bury them in a spoon of applesauce and they slide down easy.

I wish you and your daughter the best of luck and for your doctor the best of skill.

Ray
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  #5  
Old Fri Sep 5, 2014, 04:28 PM
amyangel amyangel is offline
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I HATE CANCER !!! MRI looks good ! IN THE BUTT

Thanks Ray ,
I just got a phone call from hematologist about her bone marrow biopsy test .
Sad and scared for her, it is showing 3% blasts and MDS

Last test in July was 1% blast .
BMT doc is out of town ,but hematologist will be talking to him on what the next steps might be .... which could be changing the vidaza to another chemo drug or doing vidaza again .

Which could set everything back a little .. I will keep you all posted and updated.
Ray, her Doc has her getting Mag. if she falls under 1.6 and lower ,but it is also helping her not to have seizures .

Sounds like things are going well with you Ray I think of you often and you are in our prayers .

As for her medication I crush everything and turn it into liquid and push it in her mouth and she loves milk so she gets a chaser of milk ...lol
and the mag. I think your right you just make it work and we fit it into our schedule my time is now all for my daughter now ! I love her and she is my world



I have to shout this to make me feel better !!
I HATE CANCER !!! BUT CANCER WE SURE ARE GOING TO TRY HARD TO KICK YOU IN THE BUTT .
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6

Last edited by amyangel : Fri Sep 5, 2014 at 04:45 PM.
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  #6  
Old Fri Sep 5, 2014, 06:45 PM
amyangel amyangel is offline
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Drugs to be used

Methotrexate, Fludarabine, Busulfan , Tacrolimus

Has anyone used them ?
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #7  
Old Fri Sep 5, 2014, 08:57 PM
Chirley Chirley is offline
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Don't be too down...3% blasts is still in normal range...anything below 5% is okay. It's only been 4 cycles they like to give 6 cycles before they get too concerned about the Vidaza not going to work, sometimes 9 or12 cycles. I suggest you don't get too down until you talk about this in depth at the next appointment.
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  #8  
Old Sat Sep 6, 2014, 01:37 AM
Cheryl C Cheryl C is offline
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How blessed your daughter is to have a mother like you batting for her! Remember cancer is a word, not a sentence...
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #9  
Old Sat Sep 6, 2014, 09:28 AM
amyangel amyangel is offline
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Thanks Cheryl C this is nice to know ... I wish the Doctors would share information like this? I am concerned still the same ,but will keep trusting our Heavenly Father .

Her last one in July was only showing 1% blasts .
I do have to agree with you on that one she is pretty blessed to have me as her mom ,but I would do it for my other two children in a heart beat .

Cancer is just a word ,but I still don't like it !

May God Bless all of you in the marrow group
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #10  
Old Wed Sep 17, 2014, 04:59 PM
amyangel amyangel is offline
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New Update on Amy

Good morning ,
New up date on Amy
Last week when her hematologist called she had shared with me that her BMB was showing 3% blasts ,but the Good news is they had done more smears and the blasts where actually good blasts showing baby white cells . Super !!! She is still showing MDS ,but that the BMB has not changed. today her labs are showing that reflection and she is now at 1.7 WBC ANC 1.9

Dentist appointment
We have one bad tooth which needs to come out on Friday next week she will be pumped full antibiotics before and after for awhile to prevent any infections .
Thank you heavenly Father for helping Amy make some white cells and neutrophil to help her fight any infections .

Wow! what a great team of Doctors we are so over joyed and thankful!!
Day 1
Ct scan
Amy was per-treated with benadryl and prednisone at 10pm the night before 4am on the day of and again at 10 am on the day of . and we still got the contrast rash lol not as bad and it's almost gone already .

Muga scan for her Heart as far as what I heard both tests went wonderful .
Best part they did not have to sedate her !!!

Still waiting to hear about the results

Day 2

Lab's hemoglobin 8.0 WBC 1.7 ANC 1.9 Mag . 1.5 platelets 145

pulmonary test
This was by far the hardest test for her and she did not pass it which makes me sad ,but with her being cognitively delayed she did not understand holding her breath ... But put the girl in a swimming pool and she in never above the water ,but can swim under water like a fish .
I asked what now?? they may have to do an arterial line .This will help measure her oxygen levels. But only if insurance is not
happy with the answer the hospital gave .

Social worker - we talk about where we will stay and Amy is up next for the apartment .

BMB coordinator
If you want to come see Amy you will need to have had the flu shot and not the one in the nose for it live that could cause her to become very sick . Thank you !! and Hand washing is very important and not to come if you have been around anyone that has been sick . Thank you all for loving her so much !!
We got a new binder that holds all the information I will need to help her get through her SCT
A few important things to remember no eating fresh fruit and Veg. anymore but in the binder we have all the does and don't' so very helpful !
Thankful for the binder Froedtret Medical Collage of Wisconsin Cancer Center!

On September 12 , 2014 We were told that Amy's bone marrow donor is a 22 year old Male .
She is having a Allogeneic Transplant

Amy's donor will be having a Bone Marrow Biopsy on October 6 ,2014 and Amy will receive it on October 7, 2014 New Life !!! Thank you Jesus

BMT Doc. wants Amy to have a bone marrow transplant from a BMB there is less chance of Graft-versus-host disease (GVHD)

Amy's donors blood type matches her Blood type which is A positive awesome so her blood type will not change !!!

It's a 10 out of 10 match !!!!
As far as what I can read every pre-test that was done last week looks great!

Prayers for Amy we are having a tooth pulled before SCT ,Good news her body is making WBC 3.2 and ANC 2.7 YIPPIE SKIPPIE !!!
God thank you for being so good to us !!
Sue and Amy
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #11  
Old Wed Sep 17, 2014, 07:05 PM
sbk007 sbk007 is offline
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Sounds like your daughter is doing well. That's great news. 3.2 is way better than .6.. Very lucky to find a donor willing to give marrow. Wishing you & Amy continued good news as you travel this journey.
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  #12  
Old Thu Sep 25, 2014, 11:46 PM
amyangel amyangel is offline
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Hi all ,

Last Friday Sept. 19 , 2014 my daughter had to have a tooth pulled ouch !! She is doing well and a little sore ,but healing !!

My daughter had her visit with her BMT Doc on Sept. 24 2014 ....well so did I seeing I'm the one that does all the signing of paper work for her .

BMT day is set for October the 7th 2014
First day of Chemo which is Day 6 starts on Wednesday October 1, 2014 Please keep her in all of your prayers.

Bone marrow donor is international and he is from Europe
22 Male
donating his Bone marrow to save my daughters life !!
We are so thankful!!

I will keep you all posted and updated .
Sue
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #13  
Old Fri Sep 26, 2014, 09:11 AM
DanL DanL is offline
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Sue,

That tooth pulling part is no fun, I had to have a second set of wisdom teeth pulled plus a couple of others before transplant, so I completely empathize. Congratulations on the donor and date. We are all pulling for your daughter's success.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #14  
Old Thu Oct 2, 2014, 09:37 PM
amyangel amyangel is offline
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Hi All
Amy has started her Journey of her BMT
We count down first so right now everything is Minus -
after transplant everything is plus +
Day - 6 was a very busy day meeting all the nurses .. of course wonderful !!
she saw Doc Hari
IVIG
Zofran
Mag.
chemo name - Fludarabine which doesn't make her feel sick at all ...But her body hurts.
Benadryl
Tylenol
We went over the big binder and got to meet everyone and we didn't get out of there until 5:45 pm .
Amy gets a bath every night and four new meds. were added
She is still eating pretty good so far .
and drinking just the same .
Labs
Hemo- 9.0
wbc 2.3
platelets 214
ANC= neutrophil - 1.42
mag 1.7
potassium 4.4
Good labs !


Day -5
Zofran -- help with her belly
Chemo -Fludarabine
Labs-
Hemo - 8.6
wbc- 1.6
platelets- 193
ANC-1.2 when she gets to to .5
mag. 1.9 if mag goes to 1,7 Amy will get Mag. that's just the rule Dr. Hari follows
Potassium - 4.8
One other thing if Amy's Hematocrit goes to 26 and low she will get blood this is another rule that Dr. Hari follows.

I was told the chemo she is doing should not cause lose poops or vomiting ,but we will still take one day at a time .

I got the keys to the apartment ,but can't move in until Mon . at least we will be in before the Transplant day. And it's going to be just like getting a blood transfusion. I thought maybe it was going to be a little different .

Team of Doctors and nurses are watching Amy like a hawk !!!
Tomorrow Amy will get a blood transfusion because her Hemocrit was 26
today . It's takes so long to get her blood ready so they decided with me tomorrow would be better .
Amy ate really good today again .

I will send notes when I can our days are pretty busy with going to the bathroom a hundred times a day LOL showers meds eating ... ect..
Please keep the prayers coming
Sue and Amy
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #15  
Old Wed Oct 8, 2014, 07:34 PM
amyangel amyangel is offline
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HAPPY RE-BIRTHDAY FOR AMY ON OCTOBER 7 2014
IT WAS THE MOST AMAZING THING I HAVE EVERY EXPERIENCED !
WE ARE FOREVER GRATEFUL!!
WE HAD LAUGHTER , TEARS , AND HAPPINESS !! 3.82 millions baby cells were given !! NEW LIFE!!!! THANK YOU HEAVENLY FATHER

Amy is doing great still eating and drinking DAY + 1 TODAY !!!
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #16  
Old Wed Oct 8, 2014, 08:05 PM
Neil Cuadra Neil Cuadra is offline
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This is fantastic news. Yesterday was a huge day. Congratulations to the whole family.

Please tell Amy to grow millions more new cells, just for us!
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  #17  
Old Thu Oct 9, 2014, 05:11 AM
Cheryl C Cheryl C is offline
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Wonderful news. Prayers for Amy and all the courageous forum members who have recently had transplants.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #18  
Old Fri Oct 10, 2014, 08:26 AM
amyangel amyangel is offline
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Thank you Neil and Cheryl,
Day + 2 was another good day Counts are dropping just like want .
Neutrophil is 0
wbc 0.1
hemo 8.6 after getting 1 unit of blood
Always needing Mag I was told Pro-graft can cause this .3 gram yesterday
still eating great which I am so happy about
Her body is killing her I think every bone aches
Day + 2
Amy needed
Pro-graft two hour iv drip ( oral she is on liquid ) which we take twice a day when the Doctor tell us too . Right now she is getting morning dose IV .

Magnesium was needed too .

This was by far her fastest day .

Amy is doing out patient treatment I was scared at first ,but so much better than picking up all the grems a hospital can give .

Feeling blessed and Happy today !!

Love you all and thank you for all the prayers !!!
Sue and Amy
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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