My daughter is 26 and has MDS

[amyangel]

Hi Marrow forum ,
I am typing for my daughter who is 26 years old and is cognitively delayed and can not type for herself.
We Just found out this year 2014 that she has MDS ,
Her DX is Cognitively delayed , Grand Mall Seizures ,AIHA , EVANS , CVID , ALPS AND NOW MDS ...
Currently doing Vidaza getting really to start the 4th cycle in July . After her gallbladder surgery .
Looking to find anyone out there that has made it through a SCT I need to hear come good stories !! .
Thank You Sue and Amy

[Bhutt]

Wishing your daughter well.I had a SCT one year ago today I am 58 years old. I have had a few bumps in the road but over all doing good. My sister was a perfect match.

All the best Blair

[rar]

I am 73, going to the hospital at noon today. I am having a SCT this coming Tuesday. I will let you know in a year if I survive. Doctors are giving me good odds. I wish you well.

[bailie]

Sue and Amy, there are many success stories. It seems the younger the better. Has the Vidaza helped with blood counts? Sometimes it takes several cycles.

Rar, good luck with you. Keep in touch with your progress. You will be about a month ahead of me. I should get my biopsy report today which will decide if I go to transplant in about three weeks or have a couple more cycles of Vidaza before transplant. Hopefully those pesky blast counts have gone down.

[amyangel]

Thank you Bailie,rar and Bhutt
I have two other adult children and they were tested and are only a half a match ... I did cry my eyes out after I heard this news . But with Be the Match they have now found two possible donors .

That is great news to hear Bhutt I wish you a well full life now !! God is Good !! Amy and I could not have done this without him in our life .

Rar I will be praying for you and thinking about you everyday ... Please when you can keep in touch . I would like that very much .

Bailie Yes after the first cycle we watched her counts bounce right back ! Praising God for this because she almost died three time while in the hospital. Amy had no white counts nor neutrophil for 5 months . after the first cycle they weren't she if she was going to make any at all . They told me if I would take her home she would have a week to live .

In April 2014 they started the second cycle and as that cycle was happening her BM started to kick in and start to make some cells .. the best I have seen in over a year . We Thanked God again ! She will start her 4th cycle in July after her gallbladder is removed on the 7th . Please prayers this comes out with any problems .
I will also keep you in our prayers Bailie SCT is huge !
Sue and Amy!
wbc 1.4 Hgb 8.0 Plt 247 neutrophil .06 everything is so low But Vidaza does this to you and her third week after is the worst ... I once disliked the line ONE DAY AT A TIME ,but now we love it !
Life isnt good without God
in your life !!

[Whizbang]

amyangel,

All the Best and May God Bless you and your daughter on her journey....

Bhutt - Happy 'one year' Birthday!!!

rar - All the Best and May Godbless on you on your journey....

bailie - Godspeed, and May Godbless on you on your journey...

All the best to everyone,
David

[DanL]

AmyAngel,

There are a number of us who are working through our first year and beyond on the forums. There is hope. The journey is sometimes (maybe even frequently) difficult. Transplant is not a guarantee, but a best option among a few when it makes sense.

I wish you and your daughter the very best. I am one of the fortunate ones to have found a good number of unrelated donors on the registry and had my transplant on 2/26.

[amyangel]

Thank you ! when hearing good stories it seems to make me less afraid....

Amys hematologist told me this week he didn't know if he could do it . not even for his own child . But her hematologist in Milw. tells me its her only hope .

We do have God on our side and I know it's really all in his hands . Moms should pass before there children .

She already started out in life with a tough start, and I ask how much more can her little body take ? But God seems to see her through it again and again .

Moms should be able to fix things and this one all I can do is pray. The power of pray goes a long way and when you have prayer in numbers it's even stronger.

Amy had lung infections and she had VRE she also got toxoplasmosis and had 8 lesions on her brain and other infections that the Doctors didn't even know she had. when you have no white cells to tell your body you have an infection and no neutrophil to help heal it all you can do is pray and praise God he took care of that too .

And of course we thank him for making smart Doctors and Nurses and wonderful medications .
I wish you only a happy life and I pray you continue to heal and feel better!
Thank you for the well wishes !! Sue and Amy

[amyangel]

Thank you Whizbang for your best wishes I was told about three months if things go well ... One month in the hospital and two months at a house close to the hospital .

Dr. Hari will be who does her SCT . unless he feels it would be better for her to have it done at the Childrens hospital . All hematologists and bmt Doctors at both hospitals are involved . They can not find another person in the world like Amy That has ALPS and MDS together so they have know one to compare her too. MDS is something much older people get and ALPS is very , very rare .

Life isn't good without God !
Sue and Amy

Best wishes to you too and many prayer for many years of great family time !!

[rar]

It is day+4 and the hospital released me. It has been a rough week. I will post a separate thread on my experience when I get time. I realize this is just the start of the fight. In spite of all I have been through I would do it again because it is my only hope. If you are unsure save yourself the pain of the process. I have had a lot of support. My 10 year old grand daughter sent this to my donor.

"Hi Aunt xxxxx,
Here is a 7 1/2 inch bracelet that I made for you.
Thank you for saving grandpa.
Love xxxxx"

She is a budding engineer like her father, grandfather and great-grandfather.

[Birgitta-A]

Hi rar,
Congratulations to day+4 and the release from hospital :)!

We all whish you the best possible recovery!
Kind regards
Birgitta-A

[bailie]

rar, thank you for the information. I wish you the best. I will be interested to read about those first four days when you get a chance.

[DanL]

RAR, great job getting out of the hospital quickly. Praying for a strong, smooth recovery!

[sbk007]

Day 4? - I think that's a record. Must be a trait of good Engineers. Great news and wishing you a speedy recovery.
Steve

[rar]

For Non-myeloablative sibling transplants UC hospital discharges on day +1 if the patient is up to it. I spiked a fever on day 0 so they did a blood culture and found nothing. They have found almost anywhere other than a hospital has fewer germs for infection and patients sleep better. Plus there are no midnight and 4AM vitals. I go to the BMT clinic every day for 3 weeks for blood tests, see a RN and a PA and get the trifusion flushed. I see the doctor once a week. I am fortunate to be in an apartment at Brents Place which only takes transplant patients. It has an ultra clean environment and is less than a half a mile to the hospital. Not home, but many times more comfortable than the hospital.

[amyangel]

Amy did 3 cycles of vidaza and now her counts have hit rock bottom ... does this mean Vidaza stopped working ? I was also told no neulasta shot with MDS ?
so now i'm told if labs are bad tomorrow they will do another BMB and take it from there ... I know that wont do a SCT without the gallbladder out Due to it could cause problems . Ugh .... I wish they would have taken it out when she had good counts

[amyangel]

Just wanted to know how everyone feels .... Amy Dr. tells me that when you are younger your bone marrow is more active so your body seems to ache more often .
I have to say this is by far the hardest part listening to her tell me how much she hurts or her body does .?? Oh also her belly hurts

Does anyone else feel this way ?

[Chirley]

I just wanted to pop in to send you my best wishes. Just because your daughters counts are bottoming out doesn't mean anything bad is happening. This is common with Vidaza. Re doing the BMB is a good idea...it'll give them a direction to head in. Some people have dreadful counts with Vidaza for up to 9-10 months before it starts working properly.

My haem wouldn't give GCSF with MDS either...it's an individual haem opinion. As for the pain...I didn't get any so I don't know where that would be coming from except (in your daughters case) her gall bladder or something that needs investigation. Have they scanned her spleen to see if it's enlarged? Is it possible to ask the doctor for some routine pain relief to be ordered that will prevent the pain from starting rather than trying to relieve it once it's already there? Something compatible with her other medications and medical conditions? Prevention is always better than cure.

Hope it starts improving soon.

[amyangel]

Hi Chirley,
Yes my daughter has had an enlarged spleen sense 2006 and now that we have done vidaza the Doctors don't think so much anymore .

Amy Hematologist told me that when your young and you do vidaza your bone marrow seem to ache more than that of someone older .. Young active bone marrow Older not so much . Her bone marrow is fighting hard to come back and that's why the pains and aches .

Oh we have been addressing her gallbladder sense Feb. 2014 which they place a billy drain bag in her belly . Tues. we are going to get it out . Praise God Amy started making some white cells and neutrophil !!!
Sue and Amy

[Chirley]

That's really good news. Good luck for Tuesday.

[amyangel]

Hi everyone update on Amy , Gallbladder is out , we did cycle 4 of Vidaza , they have found many matches for Amy SCT !!!

We will go for BMB on Aug 29th 2014
MRI of the Brain
in Sept. she will have a Lung test
Heart Test
CT scan
and a physiatric evaluation test


and on Oct 1,2,3,4,5, chemo 6th day ,day of rest and on OCT . 7th a Re-Birthday !! new healthy life

[Chirley]

Excellent news. Thanks for the update.

[amyangel]

Just wanted to know how everyone's Team of Doctor feel about eating Freash fruit and Vegs after SCT .

Its one thing I could get my daughter to eat after Chemo , I wash it , I wash it good I even let is sit in some Apple-cider Vinegar and wash it again .

Does anyone know the answer to that question ?

When I talked to the nutritionist at BMT she told me that they are going away from that more and more that if you wash it good for over 30 sec. or longer its kills the germs .

Life isn't good without God !

Sue and Amy

[rar]

My nutritionist says most fruits and vegetables are fine if stems and other non edible parts are removed and the fruit and vegetables are washed under running water for 30 seconds. Berries are not allowed because they can not be properly washed.

[amyangel]

Thank you !!

Oh boy berries are her favorite !!

How are you feeling today rar ? This Vidaza I can't wait for it to be done , well I should say it's done , but all the side effects from it just make her feel like crap.

We are keeping you in our prayers
Sue and Amy

[Neil Cuadra]

I think that the safest approach is to stick to canned fruits and vegetables for the first weeks or months post-transplant. They aren't as fresh but they are still nutritious and they are safe. A single bacterial infection can be a major setback after a transplant, and the limitations of canned food are very temporary in the scheme of things.

Once the initial recovery period is over, you can graduate to the safest fruits and vegetables and those you can thoroughly wash. The goal is to get your full health back, and then you can enjoy berries, leafy greens, and everything else for the rest of your life!

[rar]

You should be guided by your nutritionist and doctor. No raw vegetables. If you like berries they are fine if thoroughly cooked. You can make a small fruit pie, or cook some fruit in the bottom of a shallow dish and then put some cake mix on top and bake.

After transplant I felt pretty bad for two weeks and ate very little. I am eating more but nausea is still restricting what appeals. If I were limited to absolutely safe food I would have lost much more than the 15 pounds I shed. Life is a compromise. Be guided by your doctor.

My ANC and WBC are both in the normal range for the first time since diagnosis. The other counts are improving but more slowly. I am still fatigued it will take a while to fully recover.

Ray

[Cheryl C]

amyangel - You could buy frozen berries and whiz them up with milk (cows or other) to make a yummy smoothy ... Wishing Amy success with her transplant. You sound like a wonderful mum.

Thinking of you too Whiz, Baillie, DanL and rar and everyone on this forum who is toiling through post-transplant. May you come through triumphant!

Remember: "Underneath are the everlasting arms ...." (Deut. 33:7)

[Chirley]

I was just advised last week to eat tubs of cooked:stewed fruit or canned fruit. I just add a spoon full of whipped cream to make it nicer. (Plus I have to gain a few kilos). I was told no berries, frozen or fresh. For some reason I don't understand I was told to avoid jam....anyone know why?

[Cheryl C]

Could it be the high concentration of sugar? I know when I start eating anything sweetened with cane sugar I often end up with a sore throat.

Or, it could be because jam can go mouldy.