Please read a summary of my ex-wife at the link below. I had inversion 16 dxd at 48 five years ago and I'm doing fabulous. I dealt with slow platelet recovery throughout

https://www.dailystrength.org/group/acute-myelogenous-leukemia-aml/discussion/praising-god-for-platelets-and-everything-else

Not ex wife, experience. Sorry for the typo

Thanks for replying. I can tell your faith has helped you through this process, as we are holding on to our faith too, to get us through. Up until this consolidation (number 3) Davids numbers always bounced back terrifically. After consolidation 1 and heading into 2, his platelets were 315. This time, oncologists decided to go on with consolidation 3, even though platelets were only at 70. I have to trust that he will be okay, I just know that after the 5 days of consolidation and approaching day 14, his numbers drop and stay down for such a while. It is just so scary. Our local hospital has to send out for platelets and it often takes 4+ hours for them to arrive. They don't give him any until his number is under 10. I know I have to just put my faith in God and not worry, and believe and know that God will get him through these difficult times.

Eliza,

It is so normal to worry, this is a very tough process. Please remember chemo is cumulative so each dose can keep counts low longer. My platelets never got the parameter of 100 before consolidation and I did just fine. I even had to have lowered does of AriC due to this which seems to have done the trick-by the grace of almighty God. Even today, five years after dx my platelets have yet to make it to normal hit the low normal range-I hover around 120 to 140. I live a completely normal life, travel a ton, work full time plus and raise my three daughters. Life is awesome.

I will be praying for you and David. Also, as this support group is not as active as it once was, you may consider joining the Lymphoma Leukemia Society community at the link below. I am over there under the same user name. Also, if you'd like to chat one on one you can message me I I'd be happy to chat.
https://communityview.lls.org/

Blessings,
Julie

Julie,
What is AriC? David is on cytarabine.

Same chemo ;)

Also, sometimes caked HiAriC for high dose.

http://chemocare.com/chemotherapy/drug-info/cytarabine.aspx

David also had to have his cytarabine dose lowered after his first consolidation.

I went from 3, the Standard in the us, to 2 and then siren again to 1.5 for sessions 2, 3 and 4. Btw, europe only uses 1.5 with great success. There is no data that shows the 3.0 yields better results. Inversion 16 is o good subtype to have. Is David having 4 consolidations and where is he treated?

Because David was over 60, he started out on 1.5 and had that for his first consolidation. When we were home the 3 weeks after consolidation, he started having black out spells and his balance was off, resulting in him falling and hitting his head. I called 911 and he was rushed to hospital. His platelets were at 12, but the Lord was in control, and thankfully no internal bleeding to brain. When he returned to UNC Cancer Center (wonderful hospital) his doctor met with us and said he was afraid that the chemo was affecting his cerebellum, the part of brain that controls muscular movement. The decision was made to reduce chemo to 1 which has worked better for him thus far He finishes consolidation 3 tomorrow. We are 4 hours away from UNC so he is treated here and then he sees a doctor in our hometown to get his labs and blood products.

Hi Eliza,

Checking on on David. How's he doing now that he finished his 3rd consolidation. Are there plans to have a fourth?. I'm sure his counts are down and he's probably getting transfusions.

You two are in my prayers.

Blessings
Julie

Thank you Julie, It means a lot to me that someone who knows first hand is in contact with me about David. He made it through pretty well. His first labs after getting back home (2 days after chemo), his platelets were 18. Normally here, they do not give him platelet transfusions until his number is 10 or under, but because they know how rapidly his drop, they decided to go on and give him a bag. His other numbers were not down dramatically. ANC was at 4.6. He is not feeling great, but is doing his best to be positive. He always says to me "God is in control." He is scheduled to go back tomorrow and get another bag of platelets. Thank you for your prayers and please continue to pray for us. You are an inspiration to us both and I look forward to hearing from you.
God bless,
Eliza

Dearest Eliza,

You and David can trust that almighty God is in control. I'm so happy to help you two in any way. I've offered before I am more than happy to connect directly of you'd like. You can direct message me for my contact info. Platelets are fickle little buggers. I remember the long days getting red blood and platelets every other day for weeks due to my show recovery. I had over 30 bags of red blood so now believe our not im getting phlebotomies to remove the iron stores from my liver. Inversion 16 is the best of the worst so look to the positive.
Is David getting a4th consolidation? I will be writing both your names doen for prayer tomorrow at church.

Blessings
Julie

David finished getting another platelet transfusion a few hours ago. His number was "8" when we got there. He is scheduled to have a BMB on the 22nd, if his platelet count is high enough. He just finished his chemo consolidation on the 7th, so I wonder if his number will be up and holding by then. His doc said that depending on what the BMB shows, they will decide on 4th consolidation. Didn't really understand that as I thought the plan was always have 4 consolidations. He has had a really tough time with his platelet counts recovering, so maybe that is why. Thank you for your prayers.

My platelets always took 60 to 70 days to get into the 80s so i could get consolidations. I remember being right were you are at with my doc contemplating not doing the 4th session. What level does Davids platelets need to be to get the bmb?

They may also run a PCR test to check for minimal residual disease. That is another good thing about having inversion 16. It is a core binding AML so a PCR can detect any signs. In fact I was getting PCRs every 3 months until Nov. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785493/

I did know of several who have had three and some two who have remained in remission.

Austraila only does 2 to 3.

Praying for platelets.

Julie