Cajun,

First of all...welcome! I am envious of your sister, because 16 inv has such a good prognosis and she will not need a transplant! I had one and am alive today, feeling well. In fact, today is the 3rd anniversary of my diagnosis.

After chemo, counts can take quite a while to return. In fact, your sister will probably notice that her counts take progressively longer to return with each successive treatment. Not to worry. Par for the course.

Just remember that she will do well and she will have her health back, so hold on for the ride a bit. She will soon be able to get off the carousel.

Be well.

Cliff

Cajun,
Welcome, I am a new member too. I am sorry about your sister and your father. I lost my dad to AML (infection not the disease itself) jam 2012 and My husband Tony was diagnosed one year later with inversion 16 also. He is now one year in remission as if last week. His counts took a little longer to recover after each consolidation round but you are more than half way there. The counts will recover, and you are at the top hospital in the nation, trust her doctors and team and they will guide you through the hardest parts.
The counts will drive you mad(we are going through that right now, just w the check ups) but remain strong for her, we are their rocks! It is difficult to put on the brave face sometimes but that's what our loved ones need! Inversion 16 is one of the best prognostic types, she will do great.
Cliff...3 years today happy birthday!!!!!!!so wonderful God Bless you both
Lea

Welcome Cajun,

So sorry for your sisters DX; however, glad she has Inversion 16-the best of the worst as my Doc calls it. I also was DXd with Inversion 16 a year ago at age 48. I have three young daughters-9, 11 and 13 so I'll do anything to raise them.

Only about 5% AML patient have Inversion 16 so it is nice to have another to compare notes with. LeaPea's husband and Sgotee also had this subtype. I can certainly provide some experience with slow count recovery. I sailed through Induction with only mouth sores. My counts recovered very quickly and I left the hospital on day 26. I was deemed in remission on April 26th and started consolidation #1 with platelets at 477-above normal high.

I walked 3 to 4 miles everyday while getting chemo and after. I went home and to nadir, gave myself neupegen shots from day ten to day 30ish and went to get transfusions about every three days. Each cycle I averaged six bags of platelets and 4 bags of red.

After my first round of consolidation, my platelets had to get to 100 before I could get consolidation #2. My platelets took 73 days to get to 96. My med team required a BMB to make sure I was still in remission. I started with a dose of 3 of AriC, consolidation two dose was lowered to 2 because my med team determined my system was extremely sensitive to the chemo. Even with a reduced dose, my platelets to 60+ days to reach 84-also received another BMB to ensure remission.

Consolidation #3 dose lowered to 1.5. Platelets took 60+ days to reach 76. Consolidation #4 at 1.5 dose with last chemo received on Nov 17th 2013. Jan 23rd BMB confirmed full remission with no cytogenic trace of Inversion 16-Praise God!!!!

The head of my med team at LDS hospital in SLC UT, Finn Peterson just returned from a conference in Europe on AML chemo only protocols and is convinced that a dose of 3 is no more effective than a 1.5 dose.

Your sister is so blessed to be at MD Anderson. My med team collaborates with them often and sends difficult cases there. If your sister's doctors are not concerned, trust them.

I would love to hear more details about her treatment plan. Thank you so much for joining us. Please stay and share.

Blessings,

Julie

OK everyone...take a deep breath in....now let it out. YOU ARE ALL DOING WELL. Rejoice in that and please don't fret. It gives you wrinkles.

Cliff

Happy birthday cliff

Your my hero

Majella xxxxxxx

Soooooo sorry to hear about your sister but everything seem to be going good. She is very lucky to have this dx. I too have inv 16 and I thank God. Suck that she it just getting started but I promise that time heals all and one day she will look back on all of this as a bad memory.

Cajun -- it goes without saying that we are all very sorry you have to be here, but you definitely came to the right place. Not that doctors do not give you the message as best they can, but sometimes we get lost in their jargon. Cliff is an MD, by the way, but not an onc -- and he had every treatment imaginable -- chemo, radiation and transplant -- so we are soooo blessed to have him with us and so often he is able to cut thru the jargon and give us what we can understand.

I know of no issue that causes more inquiries here than the one that you are having -- blood numbers not coming back up after chemo. I know the feeling, I can remember it well. (I am a 4 year plus survivor -- chemo only - T{8;21} -- so, been there like many others.) In fact if you read Julie's post again you will see that she had this problem and was VERY distressed for quite a while. (Julie -- don't mean to speak for you ... please forgive.)

One problem is that the oncs and the nurse practs tend to tell you a fairly optimistic dates -- "you should be back to normal in two weeks." It has been my experience that this rarely happens especially once you get into consolidation. It sure did not happen for me, and then you get this dreadful feeling ... "Uhhhh, are they EVER going to come back up?"

The answer is YES. They might not all come back to the total normal range -- my WBC and platelets are still about 20% under the low point of the normal range ... new normal for me. But even that is no problem at all ... as my onc said .. "just don't run with scissors." I try not to cut my leg off while chainsawing, but I can chainsaw.

Of all the people we have on this forum, I would guess that half of them have had this concern at one time or another, but I know of none for which the numbers did not come back. So, take Cliff's advice and just be patient. Nature will take its course.

Thanks for coming aboard and please stay -- give us your experiences and stay on after your sister's full remission and recovery process to help out others who might be having similar issues. -- dave

Thanks guys for all the shared experiences. My sisters numbers have come up just a touch and she did not have to get platelets this past draw so she was a little encouraged by that. She will have blood drawn again tomorrow and we are hoping for more good news.

Yes, while it is really hard being patient when the numbers are not coming up, when they finally do it is a great relief and cause for rejoicing. Please keep us up on her progress -- dave

Sorry to meet under these circumstances, but this group will provide you with so much support. When my husband was first diagnosed last summer this group helped me breathe. The fear can be overwhelming, please know we are here for you.

I know how you feel waiting for those numbers to go up, it can be so frustrating waiting for them to start climbing, but they will.

Sending you warm wishes for strength and peace
Colleen and Harry

Lindzee,

It really makes me smile to see that you and Harry are in the position to be advisors to the "new recruits." When my wife and I met a 13 year survivor for lunch prior to my admission for my transplant (the contact arranged by the hospital) and saw success in the flesh, it was amazing for my sense of hope. I know that Cajun will feel the same reading your uplifting post. As I said in another thread, I am thrilled for Harry and know that Cajun's sister will join the ranks of the advisors in the near future as she vanquishes AML and returns to a healthy and happy life.

Cliff

Well, yesterday was a bad day. After my sister's number initially going up a little bit, she went for blood work yesterday and they were back down again. She had to get more blood and platelets. She also had a severe headache which made them order a CT scan to make sure she wasn't bleeding. Every little thing touches off fear. There was no bleeding thank goodness but she is down because she cannot continue treatment for another week or so. They did finally give her the shot to try to help her numbers come up. Hopefully this will work.

Cajun,

BTW, I love the picture of you and your sister! If you look at my previous post my counts were a rollercoaster. Every cycle when my counts (specifically platelets) would begin to rise around day 40, they would ALWAYS drop 10 to 20 points. I did give myself neupegan shots from day 10 to day 30ish to get my ANC to come up. Usually by day 30 my ANC would jump up to 2.5 to 3.5. My med team would stop the neupagen shots and my ANC would drop to around 1 to 1.5 (low normal) and slowly creep up.

As far as headaches go, I had severe headaches throughout treatment but not bad enough to stop me from teleworking full time. I was prescribed fioricet which helps tremendously! I am so glad to hear your sister did not have any bleeding. I had platelets at 2 and 3 and never had any bleeding issues-praise God.

Please remember that the effects of chemo is cumulative so each subsequent cycle may impact your sister's counts more.

I am praying for your family.

Julie

Thanks Julie, she is the blonde and I joked with her when she lost her hair that maybe it would grow back red. It is great to read everyone's post that tells us this is "normal" for her treatment. Thanks so much to everyone who takes the time to comment. It helps tremendously!

I had blonde hair to the middle of my back (much like my daughters in my picture) when diagnosed. Fortunately, I was able to donate it to locks of love; however, my new hair grew in a very odd greenish brown-yikes. Thank the good Lord for hair dye. My hair grew back very quickly after induction because the high dose AriC did not make my hair fall out. I also used Nioxin shampoo and conditioner that helped.

Is your sister receiving high dose AriC or something different since you mentioned a trial at MD Anderson?

Julie