Worst News Possible Today

[traceyn11]

The results from the bmb came in. The MDS has transformed into AML. Blasts are 67%. They will not be doing a transplant.

They gave us the option of palliative care - which would give me a couple of months or really strong chemo called 7 + 3 which could either kill me or put me in or close to remission. We chose the 7 +3 which I start tomorrow. They will admit me to the chemo floor late tomorrow sometime and start it right away. I guess it is similar to the chemo I would have before the transplant. If I make it through, I will be in the hospital a month and then they will do another bmb, etc. to see where I am.

The dr. said the 10-15% of patients do not make it through and my odds would be a little worse because of all I have been through. My husband and I decided even 50% was better than none.

Feeling pretty hopeless right now. If anyone has any success stories about someone in a similar situation, I would love to hear them.

Tracey

[rar]

You made the right choice. I have been in situations with worse odds and somehow I am doing well now. I wish you well. I had MDS RAEB2. Never did they say AML. At one point they told my wife that I had about 20% chance of surviving. You will be in my thoughts.

Ray

[PaulS]

Hi Tracey - I'm sorry to hear the news - but don't give up hope.

When we decided to get a transplant, the blasts in my BMB started rising - it was unclear what the percentage was because the samples were always bad - the transplant doctor was worried they might be over 10% and rising and the hematologist thought they were much lower. Then the transplant had to be postponed because of my heart problems and the need to find a donor because my brother was ruled out because of his heart problems.

I was worried that my blasts would keep rising and I'd be in trouble - my hematologist - who is extraordinary and always optimistic- said fairly nonchalantly, if it transforms to AML they can treat it with chemo and then get a transplant - not to worry. She seemed confident that they'd be able to handle that situation - not the best case - but something they could handle.

My pre-transplant exams discovered in addition to my partially blocked coronary arteries, pulmonary hypertension - that the cardiologist - having not yet met me - characterized as so high she had patients in wheel chairs and on oxygen - Going into the transplant, on paper, I looked like a mess - with odds of dying right away probably well over 10%.

I was also told by a transplant survivor to never lose my positive attitude and always believe I would survive whatever complications arose - he had bleeding on the brain associated with very low platelets which necessitated the removal of his spleen - a risky procedure with his platelet count that the surgeon didn't want to do - but did. Today he's doing great.

I say all this because you are still Badass Tracey - 10% odds aren't too bad - hell, the odds of surviving the transplant under the best circumstances, aren't great either - but the odds don't take into account who you are - in body mind and spirit. You have a lot to live for, you're young and have plenty of reason to hope and fight. You've already been through so much - at least you'll finally be getting into the hospital to treat the bone marrow problem. Take it as the first step to getting better - but no matter what happens, you'll be OK. Don't be afraid. This will bring you and your family together in ways you could never have imagined. Don't give up!

Are they planning on doing a transplant when they get the AML into remission?

Best,

Paul

[traceyn11]

Originally Posted by rar

You made the right choice. I have been in situations with worse odds and somehow I am doing well now. I wish you well. I had MDS RAEB2. Never did they say AML. At one point they told my wife that I had about 20% chance of surviving. You will be in my thoughts.

Ray

Thank you Ray! It's good to hear stories like yours.

[traceyn11]

Hi Paul - Thanks for your very inspiring message. I knew I could count on you and the others here to help me feel more positive. By the way, my daughter thinks it's funny that you call me a badass! I didn't know you had gone through all that before getting your transplant and the survivor that had bleeding on the brain and his spleen removed- wow!

I know my doctor was just trying to be honest with me, but I am not giving up now. Honestly, I wish he had not given me any odds or told me the blast count. I always remember my sister in law whose mother died of breast cancer years ago. The dr. told her she had x amount of months to live and that was all she focused on and of course she died after that amount of time. My sister in law who is a nurse, was furious about it. I know the doctors are just doing their job, but I think they should ask if you want to know.

[Cheryl C]

Thoughts and prayers for you Tracey, that the chemo will be successful and you will come through this just like you've come through your other crises. I totally agree that attitude is vitally important.

[carrieridge]

Yes you are! Fight girlfriend! We are all rooting for you!

[DanL]

Tracey

Like everybody else, I am very sorry for the news you received. Do not give up. MDS and AML are difficult, unpredictable diseases, and odds are just statistics - they have nothing to do with your outcome, your fight, and what you can do to beat the disease. Keep fighting, stay positive, celebrate each small victory you can get along the way.

[traceyn11]

Thank you Cheryl, Carrie and Dan.

I forgot to answer one of Paul's questions. If the chemo works and the bmb shows remission, then yes they will proceed with the transplant.

[Neil Cuadra]

Tracey,

I'm sorry that you have to face such a tough challenge. Keep up the fight and keep your chin up. We're all on your team.

[PaulS]

OK - that's good they're still planning on transplant. You're on your way -- won't be easy, but you can do it! Will you be in the transplant hospital or local? Is the transplant doctor managing the treatment or hematologist? Hopefully everybody is coordinating your care and on the same page. After five weeks in hospital isolation (and another 3 months going to a day hospital) - here's what I've learned:

Don't be shy about morphine - if you need it make sure you get it. I had a pump that I could press a button and get a dose - switched to dilaudid because it worked better. They gave me ativan for nausea which was also helpful - they have other drugs to control other side effects. They were pretty eager to give me whatever would make me feel better. Not a bad time to be slightly sedated.

Make sure everybody/thing is clean - wash your hands a lot. Visitors will probably need mask and gloves etc. Hopefully room/ unit is designed for transplant patients and will have additional measures to keep out germs. If you're local make sure everybody/thing is clean - don't be afraid to remind people to wear mask/gloves etc.

Hopefully you will enjoy hospital food as much as I. Try and find some meaning and something positive about this experience. Get out of bed and move as much as you can - you are no longer living with a relentless life threatening disease - you are embarking on a cure - you're in training to get healthy. Think Rocky. Listen to music. Enjoy showering. Remember you can overcome anything - Don't be afraid.

After all you've been through you are totally badass! Don't forget.

I'm still planning on coffee - Keep us posted.

Paul

[Hopeful]

Traceyn11,

You have a lot to live for, and that alone makes you more likely to live.

I was given 1 year to live, but that was almost 7 years ago! That is the good thing about rare diseases...they are unpredictable.

Good luck with the chemo! Never stop fighting or believing in your inner strength!

[JordanN]

Hi, Traceyn11,

Just wanted to let you know that I am so sorry to hear your news, but as everyone as said, you are a true fighter and have always had a great attitude which is a huge part of the fight. It sounds like you still have options open, and this is just the first very hard but very doable step! I'll be thinking of you and sending you lots of prayers and hugs!

[traceyn11]

Thank you Paul, Jordan and Hopeful.

To answer Paul's questions - it is at the local hospital because we have Kaiser so City of Hope is not covered for this - they know me very well there. I will have my wonderful infectious dr. on hand here too. I had a pain pump with my colostomy surgery but honestly, I didn't think it worked that well. Dilaudid works better for me too. I will be on the chemo floor and yesterday I did tell my dr. my concerns about the inconsistency in care I have received during my many hospital stays. The difference this time is that my sister in law in flying in tomorrow to stay for a week - she is a nurse paralegal and spent many years doing hospital work, so I will have someone there almost all the time to make sure I am getting the best and prompt treatment.

I don't enjoy hospital food as much as you - but breakfast and lunch there are okay.

LOL at Rocky. My song is The Fight Song by Rachel Platten. I listen to it as often as possible.

[PaulS]

That's great your Sister in Law is coming in - also good to be close to home so family can visit - just have to make sure everybody is clean - keep a thing of disinfectant wipes in your room and constantly clean any surfaces you and others touch and wash your hands a lot - and don't be shy if nurses aren't being clean enough. The BMT unit was very good - but they occasionally breached protocols - I found the local hospital to be less good (when I was less compromised) - but if you keep as clean as possible you should be OK. Sorry you don't like the food - try to eat even when you don't feel like it - even if its just Rice Krispies.

Good song.

The Rising by Bruce Sprinsteen worked well for me - also he does a cover of Stayin' Alive (yes the Bee Gees song) that is great. Going to Springsteen concerts really kept me going up to the transplant and played a prominent role in the music I played during the actual transplant -

I had a little Bose Soundlink audio player that linked via Bluetooth to my iPhone - and Pandora (do you know about Pandora- your do if you don't - there may be something better now) to play an endless variety of music - and headphones for walking the halls - really helped. The nurses enjoyed the music too. Good hospital admission presents...

Best
p

[riccd2001]

Although this forum is excellent for those with MDS, there are others with a better focus on AML. If unaware, you may want to browse them. For example,

https://csn.cancer.org/forum/135

Wishing you well, Ric

[Cheryl C]

Ric - how are you feeling? Are you coping with the AML?

[Faye R]

The best cure for disappointing news is positive thinking, laughter, family and friends Tracey, with this you can get through anything. I'm doing a lot of humming these days and believe me I'm tone deaf, my husband said I sound like a pack of ban she's, and what the neighbours think, well I don't care it helps me get through all those negative thoughts and energy.

Dx RCMD 2011 changed to Raeb-2 2014 was on azacitidine for 13months stop due to clinical response 2015

[Data]

Tracey e-mailed me and asked me to post this. Her Internet connection is too weak to connect to the Internet.

_________________________________________________________
The Dr. had good news today. The chemo is working. No transfusions today and the bad cell count has gone from 80 percent to 50 percent and everyone has commented on how much better I look today.

Also, I chopped my hair off before I checked in and now everyone says I look like charlise theron in the movie Fury Road, so I guess I really am a badass now!
__________________________________________________________

[johnwc]

Hi
John from Portland.
I had CMML and just prior to transplant biopsy showed it morphed into AML. So same as you.
Did the 7+3 and 30 days in hospital, out for a week, then back for the Flu/Mel and transplant.
That all started 20NOV14, and 1 year and 10 since transplant I'm doing pretty good with mild GVHD.
Anything is possible.

John

[italianburrito]

Tracey, I am just now catching up on everything after the birth of my second child and immediately thought of you and how you are doing when logging in. My dad and you were pretty much diagnosed at the same time. I am SO sorry to hear about your recent diagnosis. I think you made the right decision to continue with chemo and put you in remission. If this is any help, I am also an oncology nurse that has had patients receive a transplant after being diagnosed with AML and are doing well to this day. There is hope and please remain positive. Strong mind strong body it the motto in our family!

[Data]

For those of you who are following Tracey's progress, she is still in the hospital. She asked me to post this message:

_____________________________________________________________
I got good news today - the bmb showed the leukemia was completely gone from the marrow!
_____________________________________________________________

Hope everyone is doing well.


Data

[Neil Cuadra]

Data,

Please let Tracey know that we're thrilled to hear good news from her.

[Data]

Originally Posted by Neil Cuadra

Data,

Please let Tracey know that we're thrilled to hear good news from her.

Neil,
I just sent her the message. Thanks.

Data

[Mseth]

Originally Posted by riccd2001

Although this forum is excellent for those with MDS, there are others with a better focus on AML. If unaware, you may want to browse them. For example,

https://csn.cancer.org/forum/135

Wishing you well, Ric

Hello Ric,

Did you see any changes in blood labs or an increase in transfusion frequency or was the AML discovered/ diagnosed basis the BMB only?
My mother has been on transfusions for 3 years now, just wanting to keep a check on all possibilities.

Thanks and wishing you the best.