Debbie,

Jo has been on my mind so it is good to see an update. So did jo complete one induction and three consolidation in nine months? I made it to for consolidations in eight months and I am almost one year from my last chemo. Also Jo had stronger chemo than the standard because of the mda study.

My med team told me time and again slow recovery means the chemo is affecting the bone marrow as desired. Quick recovery may mean it is not impacting the marrow to the full extent. There are many many only survivors who had three or less consolidations. I truly believe :O will do week and she continues to be in my prayers

Julie

It is good that they are adapting things to your sister's needs. I do not know of any case that is routine and everything falls perfectly into place. We all had setbacks of various types, but it is a good sign that they are not sticking to their guns so to speak. I think you can take confidence in her med team. If I am not mistaken Julie and I are both chemo only. If that is the plan it has the upside of not having to be concerned with GvHD. And in the case of a relapse there is still that fallback position. We are praying for her and your entire family -- dave

Thanks guys!

Julie, yes she had induction and then 3 rounds and it had been 3 1/2 months and she still wasn't up to where they could do another round of the intensive chemo. She is very excited at the possibility of being done with treatments in just a few more months and that she won't get so sick with each round of chemo.

I'm excited for her also, I just hope and pray that it is enough. Thanks for the prayers, you guys are great!

Debbie

I'm glad to hear Jo is happy with the new treatment plan proposed by her med team. Having faith in your team is critical. I am curious regarding the name of the new chemo. When you find out what it is please pass it on. You and Jo remain in my prayers.

Blessings

Julie

Hey Julie, I checked with Jo on what the new chemo was and she said it is called Decoy 1. Her numbers yesterday were still not as high as Dr. Borthakur wanted them to be but he said it had been long enough already and they went ahead with the new chemo.

I checked on her last night and she didn't have any nausea (which they gave her anti-nausea meds) but she did have a pretty bad headache.

This is interesting -- I do not know of anyone on this forum who has gone on a lower powered chemo -- is this to complete out the consolidation or do they see it to be a long term thing? Please keep us up on how things are going -- we continue to pray for the best -- dave

Hi Dave, yes I do believe this is to complete out her consolidation chemo. He really wanted her to continue with the more intensive chemo but her body just would not cooperate. The chemo hit it too hard. They didn't feel they could continue to wait 3-4 mos in between each round. However, he didn't feel she had had enough treatment to just stop at this point.

At her visit on October 3rd, he did talk about her doing the lesser chemo for a year if she had to switch to the lesser but at her follow up visit last week, he stated she would do it for a couple of months and see how her body responds. After a few months of this, she will have another bmb and if that is clean, and he is satisfied, then she will just have follow up blood work and bmb every 3 mo for 2 years to monitor her.

Debbie,

I'm praying that this treatment will/has cured Jo. Please remember that inversion 16 IS curable with chemo only at 70 to 80%. :O is blessed with a very favorable prognosis. Many protocols only call for the consolidations with AriC only. Sgotee has a friend that is over five years out from consolidation. Jo had the kitchen sink thrown at her aml at a center of excellence, mda. The fact that the chemo knocked her bone marrow down is not the worst thing. I really believe she will do week and I'm sure she is relived to be very close to the end.

Blessings

Julie

I am chemo only and getting close to five years. The really could not say for total sure but they thought I was a T{8;21} -- that was the only reason they let me go thru the chemo. Otherwise I would be on vidaza for 9 months or so and then curtains. I am glad -- obviously -- that things worked out the way that they did since I do not have to worry about GvHD -- at the time they said I was too old for a transplant -- but things have changed a LOT in five years. I am now 70. I really feel like your sister's med team is up on the latest and doing what is best for her. For sure she did not need another round of the bad stuff -- I recall that and pleaded for my onc to lighten up. Which he said that he did ... but not really. I think they have other alternatives now for people who are just too weak to take another bad round. Let's all keep praying for each other, and I thank you all for your prayers for me. Take care -- dave

Hi Debbie,
Julie is correct - here in Australia I only had one induction and two consolidations as part of my chemo-only treatment, as that was the protocol. I have intermediate cytogenetics, and I know of another person who went through treatment a few years before me that followed a similar protocol. I'm now 16 months post treatment, and my friend is several years out, so having had only two consolidations seems to have been 'enough' for us! Although I finished all of my treatments in three months so I think I got off easier than some others. Julie, I certainly hope that quick recovery doesn't mean the chemo isn't giving a full effect - my counts came up rapidly into normal ranges after each cycle! I suspect everyone responds to the chemo differently, and no real predictions can be made - trust the team to adapt the plan for your individual situation. - Spaz

Debbie,

I did 2 inductions and one consolidation only and is 24 months out. By God's grace, I am well and alive today. Hang in there, miracles happen everyday.

Thanks guys, I appreciate all the words of wisdom! On an even better note, we have now begun operation save for Hawaii. We will be going to Hawaii April 2016. Hopefully this will give Jo time to heal and get back to some semblance of her normal self :) It was supposed to have been a 25th wedding anniversary trip for Jo and Mike last year but, due to AML, got postponed a couple of years which actually worked out well because now my husband and I can join them for our 25th!

I have noted on here that it has taken some time for you guys to regain your strength after treatment. Hopefully this will be enough time for her. We also have her daughter's wedding September 2015 so a lot of good things to come!

Spaz,

I pray my comments regarding fast count recovery did not concern you. What I am referring to are those who do not reach neutrapedic or of they do just for a short time. My med team shared that these scenarios were more concerning than slow recovery.

A common concern on this site to include my own seems to be slow recovery. I was told by my med team I was out of the bell curve for my time between chemo which earned me a bmb between each consolidation session coupled with a lower dose of ariC. Again my team assured me that there is no data that shows the higher dose is more effective. Many times we receive a timeline for treatment and when that is not achieved, we panic.

The bottom line, we ask react differently and pray will have all achieved the cure for aml. That is also why I wanted Debbie to know that four our seven consolidations is not the magic bullet. Many have had long remission with one, two and three consolidations with both fast and slow recovery.

I pray for continued health for all on this site

Julie

Debbie,

What great plans to look forward to. We are planning three weeks in Europe with our three daughters in June 2015 to celebrate both mine and my husband's 50th birthday and our 25th anniversary. We are staying in Rome and ending in the UK. We lived in Germany four years before we had kids to it will be great to show them that part of the world. We are very excited.

As far as travel after treatment, everyone is different. Four months after I finished right months of chemo we took a week long trip to Disney. We walked a ton and I had no issues.

Praying Jo recovers quickly and the new chemo is not so hard on her

Julie

I'm glad to hear Jo will be given more tolerable chemo, I think her marrow had enough of the high dose stuff and pray she continues to recover better and better!