An update on my sister, Frances - we got the results of her 2nd BMB and she has hit remission!! Praise Jesus!!!!! The report said she has between 1-2% of blasts in her marrow - way down from the 80-90% she had three weeks ago at the first BMB!! Thank you all for all of your prayers and blessings - I believe in the power of prayer and I know they assisted in getting her here! Now what? Doc says she will remain in the hospital for another week while they build up her immune system and then she can go home - PRAISE GOD!! We should find out what life outside of the hospital will be during this week while they are prepping her immune system. I would love to hear how things went for ya'll once you left the hospital - how did they keep track of your 1-2% of blasts to make sure they didn't climb again? Did you continue to have regular chemo rounds? Gosh I'm so overwhelmed yet again and cannot wipe this smile off my face or heart! Thank you all for your prayers, comfort and love!
MY GOD IS AN AWESOME GOD!!
Gloria

Hi again Gloria and congratulations to Frances on her remission. We're all very happy that it worked on the first go-round and a second induction round will apparently not be necessary. Frances will likely need to return to the clinic frequently, probably three times a week or so over the next month to have her blood taken to monitor her counts. She will receive platelets often during that time, maybe whole blood also from time to time.

If the doctors feel she will do well with chemo only, in about six weeks or so she will start her first of probably four consolidation chemo rounds. This is intended to eliminate any residual leukemic cells that are hiding out. Studies have shown that the disease will return 90% of the time without these consolidation rounds. If they think chemo only would not prevent the disease from returning they will recommend a stem cell transplant and begin testing you and any other full siblings for matches as well as a preliminary search of the registries.

Her initial response to the chemo is indeed good news and there is no reason to believe the rest of the journey will not be just as successful. Good luck and keep us updated.

Lou

Dearest Gloria,

What amazing news about Francis!!! Also I was so happy to hear from success stories who we have not heard from recently like Tas and Mary Katheryn (Bou). I found this group when I was about where your sister is now and hearing success stories helped me cope so much.

As my buddy Lou stated so well, there are two distinct paths-chemo only (usually four consolidation treatments) or SCT. Francis med team likely knows which of these paths she will be taking, so I'd ask. This decision is based upon several factors but primarily on the cryogenics of her AML along with her age and overall health-meaning ability to tolerate SCT. The first remission is always the best meaning a relapse (blasts over 5%) after Induction may be difficult to tackle so subsequent rounds of chemo, usually HiDAriC (High dose cytarabine) will be needed either to bridge her to transplant (like Lou and Tas) or four rounds to sustain remission (like me and Bou).

This is what keeps the blasts down-BTW everyone has blasts usually under 5%. They are immature cells made by the bone marrow. When leukemia happens too many are made and they do not mature, pushing the healthy platelets, RBC and WBCs out.

You mentioned Francis immune systems. This is where I climb on my soap box. Many who die from AML do so due to infections not the cancer. I cannot overstate the importance of sequestration during this time especially this time of year. I had young children at home so when I was released from the hospital after 28 days of induction we decided to take a very draconian approach in this department. And for me it paid off-not a single fever not infection. For the entire year I received chemo and recovered I did not allow a single visitor in my home, I did not go to a single public building, my girls did not go to friends and when they returned from school each day, they removed all cloths in our garage (germs cling to cloths) and they immediately came in and showered. My onc loved this and wished everyone would follow it. Not all can. I was blessed to be able to telework fulltime and I walked 3 to 4 miles everyday.

Optimally, this is what I recommend. Especially stay away from small children as they carry many germs. Since returning to work and new normal my life has been more abundant. We have traveled the world extensively and I have only had one real cold-by the grace of God!

As I attend church tomorrow, I plan to ask for specific prayers for you and Francis that is a SCT is required a match will be found soon.

BTW, love the profile pic-which one is you and which is Francis.

Blessings,
Julie

You all are amazing! My sister said she has felt all of the prayers and love being sent her way. Thank you all!
Report today said Frances has to stay another week - on Tuesday if next week it'll be day 28 and they will do another BMB. I guess during that time they will continue to raise her blood levels (?). Still no news on a transplant - maybe they will outline her plan this week - I hope! You mention how serious it is to keep her immune system protected - while she only has an 18 year old at home, she does have to grandsons (8 mos and 2 yrs). It's gonna be hard to keep her from loving on them when she sees them ;(. How will she handle that? Wear a mask? Sucks!
Thank you all again for your posts and prayers. I send her texts of things to ask the docs based on what y'all tell me. You make me sound so smart! ;). And Julie, you asked who is who in my profile pic - I'm the tall redhead and she's the short blond!
Much love and respect to all of you,
Gloria

What great news Gloria. My son ended up having an SCT and is doing great.

As everyone has said it is very important to stay as germ free as possible. Mask, gloves and lots of hand washing. My son's doctor recommended that has daughter bath and put on clean clothes as Julie did with her girls and it seemed to work good as he went through tge whole process without an infection.

Hugs and prayers for you and Francis.

Karen

Gloria,

I thought you'd be the red head

Gloria,

I thought you'd be the red head

Gloria,

I thought you'd be the red head

So sorry for the triple partial post, 4th attempt

Gloria,

I thought you'd be the red head

Love the picture!

When Francis experiences neutropenia

http://www.cancer.net/navigating-cancer-care/side-effects/neutropenia
http://www.cancer.net/navigating-cancer-care/side-effects/neutropenia

And her immune system is compromised, she must be so careful. The reason children are problematic is because their metabolism is running much faster than adults shedding germ cells at a higher rate. My onc continual said of your friends and family love you they will protect you and stay away, especially when sick. I had over a dozen of my contemporaries die from infections so i became super vigilant.

So tuff with grandbabies, I'm sure.

Keep us posted on the treatment plan

Yes ma'am - I am the redhead! Lol. How did you know?!?!
Update on my sweet sister - WBCs remain up and BMB either Monday or Tuesday and then she gets to go home!! I've told her about all of ya'lls posts about staying germ free and I really think she gets it! She really really realizes the affect germs can do to her. Her docs keep telling her the same thing.
So here is what we know as of today: bmb Monday or Tuesday and if all clear she can go home. She will come back the next day and meet with the oncologist in the clinic and they will set up her chemo schedule --> looks like it'll begin with every 28 days she will be in the hospital for 6-7 days for chemo. Not sure how many times yet. They will also discuss stem cell transplant. I guess my question (and dang I wish I was there to ask it!) is, at what point do they determine if a stem cell transplant is necessary? After how many rounds of consolidation chemo? What's the trigger they are looking for??
Anyways that's all I know tonight. So thankful for you all. If I could hug each one of you, I would!
Much love,
Gloria (the red headed sister!)

I am the red headed mother!

With my son it was discussed in his first meeting with the transplant doctor after induction and before his first consolidation round of chemo, but he also had MDS with his AML which basically meant that there was a strong chance that his AML would return without the teansplant.

I would say that when they talk about SCT will depend on how they feel her chances of relapse are.

Tell her to stay strong.

Prayers
Karen

Gloria, so glad to read your post about your sister's progress. I like your pic also because I am the tall redhead in my pic and my sis is the shorter blonde also. Jo is 55 and has been in treatment for 3 years but she is kind of a weird case. Her body couldn't handle the really strong chemo so she had to do a lower rate for a longer period of time. She has really had no serious infections even though she has had chemo for 3 years so she has been lucky. She has had some UTI's but she was prone to that before. She does have grandchildren which she has refused to stay away from and still done well regarding infections. It can be done but as everyone has said, it is not recommended. I hope your sister's progress continues to go well and that she is able to enjoy her grandchildren a little with precautions. My sister drives me crazy with her doctor visits because she doesn't want to know anything she doesn't absolutely have to know. That's how she deals with everything so I have to go along with it but I am completely different. I want to know everything, lol and wish I could be at every visit with her. It can be tough but your sister is doing well and she will get through her treatment! Hope and pray her progress continues to go well.

Debbie

Gloria,

So sorry about the multiple red head posts. Your pic reminded me of Debbie and Jos. I love red heads, most of my close friends are.

Blessings,
Julie

Hello everyone! Wanted to post an update on my sister, Frances. She had another BMB on Tuesday, February 7th and it came back awesome! She was released from the hospital on Wednesday, February 8th. She was soooooo happy to go home!!!

She had her first appointment with the oncologist today. Labs look great and she will go back in the hospital for her 6 day chemo treatment two weeks from today. I'm so proud of her and how well she is doing....other than being tired, she's doing well. She complained to her oncologist about some ovary pain (only small pain, but she is so in tune with her body) she's been having for a few days. She's already been through menopause. The oncologist said she wants to keep an eye on it, but right now getting her through this first consolidated chemo is priority. Anyone experience any odd aches/pains after induction?

Anyways, blessings to you all. I think of you often, but get so busy during the day that I dont get a chance to check in.

Everyone take care....and Praise God!
Gloria