Mom trying dectibine

[lucym]

My Mom has been in the hospital for 7 weeks, the ARA-C treatment or the Mylotarg did not put her in remission. I learned what refractory means. They wanted to try more ARA-C and Mylotarg together but we did not see the point since they did not work sep. My Mom wants to try something else so we decided to go with decitibine. The plan is to give Mom 5 days of IV treatment starting tomorrow and then take her home, even with daily fevers because they can not find infection so the AML must be causing the fevers.
Yesterday I took her outside in a wheelchair for the first time in 7 weeks, my heart breaks thinking about her never being able to come home again and see all her grandchildren running
around. I am prepared for all the counts to drop I just hope she can make it through. Praying for her, me and all of you.
Lucy

[JaniceR]

Hi Lucy:
My dad started decitibine. He finished his first round and starts round two next week. The ara-c and trisenox didn’t work for him. The decitibine hopefully will. It brought his counts down further, but he would just go back to the hospital twice a week for platelets and once a week for red blood. Today (the end of his three weeks off) his counts came back up (woo-hoo!) so he didn’t need to get anything! For the five days he was on the decitibine, he got more tired than usual and didn’t quite feel himself… but it passed. He feels and looks great. In fact, he says he feels better now than he has in years. But this disease could’ve been working on him for years. So, Monday it’s round two, so I’m sure his counts will plummet again. I’m hoping they will again recover after being off it for three weeks. The doc wants to do a bone marrow biopsy after four rounds. We are taking him on a trip he’s been wanting to go on for years and years…. Bryce Canyon, Monument Valley, Lake Powell and Yosemite. We pray alot and keep our fingers crossed that this new drug is THE ANSWER! We will pray it is your mom’s and everyone else’s as well. All the best.
Janice

[lucym]

Thanks Janice for the update, I was hoping you and/or Kristy would respond since they have got AML and are trying this drug. A little worried since my Mom did not respond to any of the other treatments but here’s hoping. Mom’s counts are already pretty low but they have been lower. We have set up so my siblings and I can donate plts and one of my brothers has the same blood type so we will be donating red blood too, better than HLA matched. Tell your Dad to have a great trip, prior to having my third child I was a travel agent. I always loved sending people on that trip (I wish I could get the courage to take my 3 kids…..perhaps when they are a little older). Keep us posted…..All the Best
Lucy

[patti]

Lucy,

Can I ask how old your kids are? Mine are 5, 6 (7 next month) and 8. We’ve been travelling since my two oldest were 2 and 14mos. Our first trip was from Oregon to Minnesota (and all the states in between) in a rented motorhome. If you ever get a chance – it’s the ONLY way to go with little kids. The MH became like a house to our kids and was there “safe haven.” They always could see there “house” wherever we went and it gave them a sense of security. Having a bathroom always handy was a huge help. And they can play on the floor and such while someone is driving. MH laws are different than vehicle laws about seat belts, etc. Don’t shy away from travelling with the little ones. They will LOVE it. After we rented our first MH we eventually bought a used one. Well worth the money and being able to sleep and cook in it makes it all the better. Cost wise, it’s probably not much different then flying some place, renting a car and staying in a hotel. But it’s much better because it’s always yours and you can up and go whenever you want. Ours is always half packed with essentials so all we have to do is throw in food and some cloths and go. Towels and kitchen stuff always stay in it.

So, when life settles down for you, take a trip (and take your mom)! It’s worth every minute. It costs about $1000 a week to rent a motorhome. We negotiated miles with the company so we didn’t pay for them. But we were also gone for 3 weeks that first time which was unusual for a renter.

Anyway, wanted to give you some encouragement that way. It’s really a blast to travel with the little ones via MH.

Take care. Let us know how the decitibine works for your mom. Sounds like it might be the one to work.

Patti

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