Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
BMT completed 20th March 2014
Just to update you, Mum is doing really well... she is walking again, all be it with a walker but its improving all the time.
When she came home, she was only able to walk say 10 meters assisted, now she spends more time out of the wheelchair than in it. She was in it Sunday night and only really used it today as she had her monthly checkup.
So checkup
Hb 145
WBC 5.5
kidney / live normal
platelets 90
The platelets they are not worried they say its just normal to be low and slow, she has one week they may be up to 109 (highest they have been) then they go down and then then go up, they did show mum her chart and its like a big wave... last fortnight they were 86 so its on the up wave again.
That stupid (but important ) Cyclosporine she is being weened off, reduced again today and then again in 2 weeks... Can not wait as we all think this is the source of the non-walking problem (each time it has reduced she has improved).
Anyway all is good, she feels great and learning to live with a slight disability at the moment, is better than other outcomes :)
Just to update you, Mum is doing really well... she is walking again, all be it with a walker but its improving all the time.
When she came home, she was only able to walk say 10 meters assisted, now she spends more time out of the wheelchair than in it. She was in it Sunday night and only really used it today as she had her monthly checkup.
So checkup
Hb 145
WBC 5.5
kidney / live normal
platelets 90
The platelets they are not worried they say its just normal to be low and slow, she has one week they may be up to 109 (highest they have been) then they go down and then then go up, they did show mum her chart and its like a big wave... last fortnight they were 86 so its on the up wave again.
That stupid (but important ) Cyclosporine she is being weened off, reduced again today and then again in 2 weeks... Can not wait as we all think this is the source of the non-walking problem (each time it has reduced she has improved).
Anyway all is good, she feels great and learning to live with a slight disability at the moment, is better than other outcomes :)
I just spoke with her and she is day 20 and has engraftment. Her "new cells" are producing so well her med team is releasing her on Monday!!! She is extremely tired which is to be expected but is managing to take a walk about each day. She so appreciates all your prayers and positive thoughts.
Blessings,
Julie
Please let her know she is in my prayers.
Karen
For reference, this was the clinical trial that we were in:
http://clinicaltrials.gov/ct2/show/NCT01823198
I was disappointed as was my son because he really wanted to help me, but I'm relieved that he doesn't have to get poked and have blood drawn.
I'm also a little grateful that my protocol is shorter now. It went from 14 days to 7. So my new dates (pending the health of my donor) is Oct 14 for hospital admission and Oct 21 for transplant. We "sign consent" on Tues 9/30, so I'm hoping that if we make it past that day, it should be a go with this donor.
They are wanting to do another trial where I would be randomized to rcv Busulfan/Fludarabine OR Busulfan/Fludarabine/Clofarabine. Does anyone have any experience with Clofarabine? I was told it would just make my side effects a little worse and might get hand and foot rash.
http://clinicaltrials.gov/ct2/show/NCT01471444
So that's the deal with me right now. I'm feeling really good right now, as my last chemo was Aug 3 which put me in "deep remission". I'm actually getting out a little and visiting with friends (with my bottle of hand santizer) which has been AMAZING.
Twilight, I'm so sorry about your loss. But glad to hear that your brother is doing well.
Larrissa, it's great to get an update on you. So glad to hear you are doing well. Thanks Julie for posting.
Hugs and prayers to everyone,
Lora
Good to hear about the plan, and I totally get your mixed feelings about your son.
And really happy to hear you are meeting friends. It's so important to recharge before transplant, if possible. Now after having gone through part I (day +22 today), I understand why everybody says how important it is to come into transplant with physical and emotional strength.
I don't think I've received the chemo you might be getting. But I did get a burning sensation in the palms of my hands and in my feet, apparently a side effect of Cyclosporine (it has SO many potential side effects!). If it's the same kind of side effect, for me it was quite uncomfortable but very manageable, and it went away once my body adjusted.
So glad to hear about Laarissa, we are practically twins if she's on day +20 :)
I'm at home and doing well. I attended family meals to celebrate Rosh Hashana, the Jewish New Year. The food had a metallic taste (because of this weird thing that happens to taste buds...) so I missed my mother inlaw's yummy cooking... and that one outing a day totally exhausted me. So I am adjusting to weird taste buds, to taking lots of medications several times a day, to staying away from the sun (Tel Aviv is extremely sunny), to having a fraction of my energy, and more. And with all of this, I'm super grateful to have gotten to this point (and I know to take it one day at time) and enjoying each second of being at home.
Abby
So glad you are home and able to enjoy some of the goodness minus the the amazing food. I'm grateful you had a match and have made it through. You certainly have had a journey. Praying for a long health life you ask the bmt warriors.
Blessings
Julie
I'm sure it is a relief to have a firm plan after donor number one fell through. I know this happens on occasion but I'm sure the added stress is a challenge. You have such a positive outlook, that is admirable.
Praying for a smooth path to sct for you.
Blessings
Julie
Abby, I'm so glad to hear you are home. I didn't realize you lived in Tel Aviv. I have a dear friend who lives in Ra'anana. Happy New Year!
The taste alteration is VERY annoying. I had it for about 6 months. Everything either tasted metallic or just plain bad. I remember my first meal out of the hospital...a piece of fried fish. It took me an hour to eat it. Also, if you are suffering from a dry mouth, try a solution of baking soda in water or Biotene. The dryness will resolve.
Remember that your sense of taste will return. Mine did, as did an appetite even more voracious than before...LOL. I made the most spectacular chicken soup with matzoh balls for the holiday and baked chickens as well. It was as good as my wife's and that is a major compliment to both of us. If talk about food turns you off, it's natural. Just look forward to the day that these things will make your mouth water.
May you and everyone else on this website be inscribed for a healthy and happy New Year!!!!
XO CLIFF
The doctor told him that since his daughter's 5th birthday party is outside he can attend it so he is very happy about that.
Glad to hear everyone else is coming along fine. You are all in my prayers.
Karen
Awesome news, I bet he is thrilled to be able to attend her 5th bday. So wonderful. But please remind him to be carful, no eating chips from same bowl as guests, etc. he will need his own food separated completely. They say buffet or family style is very very bad for post bmt. Esp w all the back to school viruses.
He rocks, his numbers are great!
I will pray for Tony, BUT HE DOES NOT NEED MY PRAYERS!!!!
Why, you might ask? because Tony's bone marrow will make all you you smile, including that precious Izzy. Relax, go for a run with him (if you can keep up) and make him his favorite dinner (celebration in advance). I am sure that the process of getting a bone marrow is to him, like me, no more painful than getting one's teeth cleaned. Have a happy time tomorrow, even though the results won't be back.
I have my 3 year post transplant check tomorrow. I am not even seeing my transplant doctor, just the Survivorship nurse. That's how blase they are about me now. Start counting, because Tony will be there before you know it.
Karen,
I am thrilled about Jeremy. It is nice that he will be able to attend his daughter's 5th birthday. When one has a 30 year old daughter, as I do, he is quite aware how quickly those milestones pass. Ditto on the food. Bananas are great. He can have his own bag of chips. Eating is the least of it. Loving is the most. Have a great time
So glad to hear Jeremy gets to go to his daughter's party. So wonderful.
Lea,
Praying for Tony's clean BMB. I can't believe he RUNS. He is a rockstar survivor.