Im sorry about your mom ! The docs do use the markers as a way to gauge the prognosis and treatment. Its usually on a scale- good, moderate,and low. Please don't let this bother you though ! If she is in the lower prognosis, there is plenty of people who have been successfully treated anyways. It basically is a way for the doctors to figure out the best treatment plan. There is so many other factors that come into play such as her overall health, any continuous health issues, etc. The best you can do is keep her positive and give as much support as possible and put your faith in God. We all are here for you !

Aussimum,

Sorry to hear about the monosomy 7, but I have to agree with Phil. I would not focus on prognosis, because, as my friend Professor Turner (a cancer survivor) told me, "Cancer is a binary thing. You either get better or you don't." Please survive in all prognostic categories, even the less favorable ones. Just have faith in your Mum's doctors (and God) and let things unfold. We are all praying for her and that certainly has to help.

We're here. Don't forget that.

Cliff

thank you for your responses ..... we have pretty much taken the high road, as my partner said yesterday the old Chinese proverb

"worrying about bad things happening only gives them a chance to happen twice"

I had a long chat with mum yesterday (as I live on the other side of Australia and timing my return back home to when she really needs me) and we are all positive, she feels really good at the moment, and there is no point stressing about outcomes and what this all means until we go through the treatment.

Each day she treats like she would normally and gets up and dressed and goes for a walk around the ward to keep active (she is in day 13 of her induction so staying away from germs as much as possible) .... Everyone is positive that we will get through this and why can she not be in the percentage that survive.

At the moment she is having quiet a bit of blood and her platelets are very low and having those as well, but it seems that this is all part of the course :)

We are also just focused on her getting through the induction as healthy as possible so that she is in the best possible shape for round 2 & 3

Perfect attitude Aussimum,

Keep your mother as active as possible and eating as much as possible. She needs to be in top shape before each blast of chemo. That will keep her healthier and get her out of the hospital sooner. Do not dwell on cytogenetics. I only know that I was in the middle group, that's it. I believe in the don't ask, don't tell policy unless knowing would change what I would do. Always remember Prof. Turner!!!! Cancer is a binary thing. In addition to being one of the smartest people I have ever met, he is one of the most level-headed. Your Mum will get through this (with your love, of course).

Cliff

I am not that all convinced that they get these things right. They did not give me much of a chance at all, and started me off with more or less palliative care. I got a new onc and he asked me if I was willing to tough it out being hooked to the IV 24x7 for months. I am quite lucky he took me on -- I did not know anything about it back then and my brain was in no condition to learn, plus I really did not care at that point. Anyway, I am still here 3.5 years or so later, and so are a whole lot of other people who seemed like they had no hope -- several of whom are on this forum.

Oh -- the big problem now is infections, so as Cliff said -- to get her through you should not leave anything to chance. I did not even touch anything -- I carried a paper towel around with me to open doors and such. Keep the mask on when outside of the room -- stay away from veggies that might carry bacteria -- stay away from people in general. Lots of discipline at this point might avoid just that one infection that would be so bad. Odds are almost 99% that she will come down with something and will just have to tough it out with the antibiotics they give her until the blood numbers come back up and she can fight it off. The blood transfusions are normal -- it is good that they are taking care of her in that regard.

Thank God for every day -- live it to the max, and then get ready for tomorrow ... it will come. -- dave

thanks again everyone..... looks like we are doing everything as suggested. Mum is walking around the ward 2-3 times a day as she is not allowed outside at the moment.

She feels good, doing her deep breathing ... hasn't lost the hair yet (which isn't top on her list of fun things to do) ..

Had an issue with platelets earlier this week as her count went to 2 so she was told not to move from bed as obviously they were very concerned about bleeding.

Ended up giving her a bag then testing 1 hour later, and it had only increased by 1, then another bag same result... but then a third bag did what it should have done and its back up to 17 ( hospital likes it above 10 atm) ... Doctors firstly tested for anti bodies, but as it spiked back up again, thinks that maybe she had a couple of bad bags and her body just didn't like them .

Just on the waiting game at the moment.... day 15 :)

xx

Hi Aussiemum,

I am an Aussie mum too, from WA, I had a transplant 18 months ago. I think that your mum should just focus on getting through each step as it comes, not to worry about prognosis at this stage. It's great she is getting up and walking around. It is hard to be confined so making sure the family and friends are keeping in touch can be helpful.

Hoping your mum's blood counts improve.

Nicole

I guess any good news you just want to scream from the roof tops.... we are day 20 of the induction and 2 more rounds to go, but they say around day 21 is when they expect to see the blood counts increase...

So yesterday mum had no bloods or platelets, which means normally a decrease of Haemoglobin of 5-6 and platelets be about the same today..... however the platelets went from 17 to 50 and the Haemoglobin from 75 to 76 ...

The first time in 3 weeks those went up by themselves.....

yes baby steps and she will not be dancing in a nightclub tonight, but its the first positive step we have had

just had to come and blurt it out somewhere :) xx

Wow -- congratulations -- it is amazing they were able to nail it perfectly like that. Mine were about 10 days late and I was thinking they would never come back. Good thing they did because I had an infection they needed to take care of. Good that she is being safe -- for sure do not take any chances at all. -- dave

thanks Dave :) no chances at all are being taken, I told her over the phone this morning that it means that she has to keep doing all the good things she has been doing and stay away from as many people as possible

:)

Good news again today, the doctors are very happy with how everything is going and they think she can leave hospital for the first time in 5 weeks on Saturday.... this is just for a 7 day break and then back to the hospital and start all over again :)

I know we still have a long way to go, but all the positive thinking and making sure that she is following the rules 100% of the time and all her friend being understanding about staying away has put her in a great position for round 2 :)

Great news Aussiemum.Nothing feels as good as going home and sleeping in your own bed. I remember the first time I got to go home after 7 weeks, I had really bad bone pain and could hardly make it up the stairs but I was determined to sleep in my own bed. One by one I made it up the stairs and then lay in my beautiful soft bed...worth every step!
Where abouts in australia is your mum

Aussiemum,
Excellent news. The idea of going home for a few days can be a marvelous motivator.
Keeping you all in thought and prayers.
Andrea

I remember those days of going home for a seven day break. Priceless!

I hope she was able to savor every moment.

The day will come that she can go home for good. It seemed so far off. I have been home for 8 months now. This too shall pass.

lily

Sorry about the slow reply, was enjoying looking after mum for 10 days and just got home just over 24 hours ago.

Mum is in Perth, Western Australia.... one problem we have is that she lives in the country (Margaret River) so whilst she was allowed out of hospital she was not allowed to go home as they needed her to be in the hospital ever 2 day for either the blood test, or bone marrow biopsy.

What we did do though Is have mum all in our little unit bubble (that we rented) on the beach. We cooked and cleaned and made sure she got her strength back. We went for walks along the beach and basically made sure she felt a little better.

During the week out her blood counts went up, and the Bone Marrow biopsy this time they found liquid (first one they could not and gave the Fibrosis diagnosis as well) Last count her Haemoglobin was 88 (highest it has been in 6 weeks) , Neutrophils were 1.9, and platelets in the 200's ... all of these have gone up in the last week (this is what it was on Monday).

Only disturbing thing was that the Biopsy was not back this Monday, so they basically said she had to wait another week until they get her back in the hospital to start round 2..... obviously I am concerned as all I want is round 2 to start, so we can get to round 3....

Seems like also cause she got through round one, with not 1 side effect or infection the only thing they say is "don't expect to get through everything without an infection" .... im not dumb, but a little bit of positive thoughts would be good....

Our motto is, if we have got through round 1 without an infection then it means during round 2 mum is not fighting off 2 infections !!!

Thanks for my reading my little rant

xxx