Not a good day. leukaemia diagnosis.

[biscuitsandbandages]

When I woke up this morning I was a mum of 3 with an 8 week old baby.

Now im a cancer patient on thr coronary care ward.

This cannot be happening to me.

Yay for relief re virus and your dc. So good that you have a science/health professional background and can process the information . So crappy that you are in this situation.xx

Biscuits, you are amazing. Keep doing what you are doing, you rock!! Fabulous news about not having the virus, brilliant

And thanks for explaining about a BMT not being curative. I had no idea that the BMT came after napalm-chemo. And that the napalm-chemo was the curative bit.

Still thinking of you, still wishing you and Mr Biscuits and the rest of the tin all the best.

Stay stale, all of you xx

You sound a bit brighter, my lovely.

You can fight this!

How is your poor DH coping? Is he working and doing childcare? Does he have extra support?

I think of you every day and would love to do something practical for you if I can.

Last message not showing but if you have biology background you'll probably understand the articles and find the patient leaflets very basic! I generally skimmed past anything about mortality as many of the papers were old and things much more advanced now & yes moving very fast. Survival so much better as the after care so much better and infections dealt with quickly.

Any questions please ask! I've done well so far no GVHD yet but cleared of disease!

Evening Biscuits

Evening posters. It is informative to see other posters' experiences of leukaemia and bone marrow transplants to add to the reality of the process. My experience is similar to Blondepips and how Biscuits describes, but as we each have our own personal plan within an evolving protocol, our experiences will be subtly different.

I will add my experience, hoping it helps. I always work on full information, no veneer, fog or other unreality.

1. The initial chemo is to irradiate the blood and rogue cells, initially gently, but then as quickly as possible. A lot of blood is transfused and steroids are prescribed to keep the body's processes alive. There are a few different types of chemo over a few weeks.

1. After this initial period, the intention is to restore the body back to pre-Leukaemia diagnosis, ie 'as you were' with your own cells but without the apparent blood disorder. It is possible to survive from then on, but as the '1 in 14 million cells on a pinhead' may still be lurking around somewhere in a deep recess of our bodies, the chances of a complete cure are relatively low.

1. A Bone Marrow Transplant offers the best chances of a complete cure based on current information. It takes time to both find a donor and prepare the body for that which needs to be in the best shape. That time is obtained by following the processes at 1 and 2 above. Time out before the transplant includes lots of family life, good food and fresh air!!

1. Once a donor is found (I had an allograft - 'mud' - or matched unrelated donor), the body can be prepared for the transplant. There is no sense in transplanting over existing cells, so the patient's entire bone marrow must be destroyed by some aggressive chemo. For me it was not painful, just extremely tiring (like walking around on the seabed some 40 metres below in a heavy diving suit).

1. This aggressive chemo for me took about 72-96 hours. With no bone marrow, one would be 'running on empty' so I had about 3-4 bags of blood to fuel the tanks ready for 'take-off' (transplant). The transplant itself is not a great affair. A small bag of clear cells over about an hour.

1. But from that moment on, the donor cells are finding their way back to base and settling down in the bones. After about 3 days I had a throbbing in my long bones (femur and humerus) which I took to be as sign that something was working. [As an aside, to this day I swear I can feel more sensitivity through my legs than before - standing in a building I can tell how much human traffic is around and in which area people are moving around].

1. From tht point on, the body cruises on empty. It is a bit like a plane taking off from England and flying across the Atlantic, with not quite enough fuel for the journey. A refuelling plane is on standby (a blood transfusion) but the body may just be able to start firing up and producing new blood from the donor cells to complete the voyage (.....Life....) on its own. Most cells start firing up within 14-21 days. I was lucky - mine fired up within about 9. We all fire up eventually.

1. Graft-v-Leukaemia Effect is the donor's immune system adding to your own and killing off any rogue leukaemia cells. This is of course a good thing.

1. Graft-v-Host Disease is the donor cells, an immune system in itself, regarding your body as a foreign object in relation to it (in the same way that our own bodies may regard say a transplanted kidney as a foreign object). One of the benefits of GVHD is (as I understand it) that your donor cells roam around for a while afterwards (weeks or years) cleaning up and generally discarding any other things it does not like - whether rogue leukaemia cells, other diseases, viruses etc. I had and still have annoying GVHD on certain parts of my skin (after trying many things unsuccessfully, good old Palmer's Cocoa Butter Oil was the solution). Some people get no GVHD at all. But generally a little GVHD is good for the longer term.

10. My life expectancy pre-Leukaemia was 75. This was the goal I set myself, in my mind. Post-Leukaemia it is at least 88 (whilst reading a book, in the sun watching my tomatoes grow or hearing the backwash of a wave dragging pebbles out to sea) - and this weekend I increased my minimum life to 90, in my mind.

I could be wrong about all the above, but just my experience.

Still trying to get to middle-age, unsuccessfully, just seem to get better and stronger as each season goes by.

Sleep well, tonight.

Blonde and desert I am so blessed to have met you and benefit from your experiences ahead of me on this journey. It fills me with such hope and makes the waiting and the process easier to bear. I am so pleased you are doing so well and you guys are definately on my bedtime prayer list for a long and happy life!!

This thread is amazing.

It's lovely to hear success stories, and to see how it's helping Biscuits (who I have an image of in my mind looking very upbeat this morning ).

Morning Biscuits.

Blonde and Desert, you are ruddy marvels, it's great to see you helping Biscuits and informing the rest of us.

Hope today is a good one.

Just checking in to say good morning x

Agree with Awomb, ruddy marvels Blonde & desert! I applaud you. The support you're providing biscuits with is so palpable.

It's also great for the rest of us to be informed of what biscuits is going/going to go through. I worry that some of my (well-meant) sentiments must come across as platitudes at times. I felt this keenly at times during my most recent stint in hospital so I'd hate to do the same to her. It'll help biscuits' supporters no end to come from a place of knowing & understanding of what she's actually having to endure.

Stage 3 in desert's chronology looks like a good place to be! Admittedly the calm before the storm, but it could serve as a paradise-like pitstop for you biscuits and I am so looking forward to you getting to that stage, and beyond.

Hope today feels easier.

Morning Biscuits

I have read your whole thread with complete awe, you sound like a wonderful person with so much love for your family.

Am routing for you all the way, onwards and upwards hey

Hi biscuits, had some info this morning from Anthony Nolan, they have a newish forum for all transplant info. They also have very good booklets one called the 7 step guide which is about post transplant.

I had a sibling donor, my brother matched. I'm not entirely sure about leukaemia protocol ( but desert knows plenty).
I have lots of tips for how to get through your transplant and can tell you what to expect, but your learning already with the treatment your having.

Hope today is a good day

Just catching up since I last posted - so glad to hear about the cause not being a virus, but sorry you had to suffer from 'bloody bad luck'. Stay positive - you are doing so amazingly, and if 'knowledge is power', you have all of the tools on this thread to power through to recovery - how brilliant MN is at times like this when you need positivity, answers and support.

I've had some more good news :-) fitting nicely with deserts experiences above I may get some home leave soon :-)

I had my last intravenous chemo of this part of the treatment yesterday and still holding up well.. I have injections and more lumbar punctures to enjoy but....... If my blood counts improve over the next 7-10 days they are considering letting me do stage two as a daily outpatient, otherwise under home arrest and I have to be sensible but..... But..... Maybe? My own bed, tucking my children in, night feeds and sitting in my garden (DH showed me a photo and the grass seed in a soggy bare pit before easter is now a beautiful lawn! )

Not sure i want to tell my family yet..... Just in case it can't happen.... But where the is life the is hope :-)

Oh biscuits that is fabulous news. Got everything crossed!

I am just so pleased to log on & hear that piece of news, Biscuits. Will be keeping everything crossed for you.

Where there is life there is hope.

Indeed biscuits!

^ Representing the flowers that will be growing in your lovely garden, when you get home.

hurrah for you!

Yey fab news! I did inpatient chemo for one type of chemo which once neutrophils were above 1 I got two weeks at home, but outpatient chemo is totally the best idea, my only advice would be ban your kids from play gyms and ask the school to advise when bugs doing the rounds, take precautions with the kids and there's less risk to you. Although I didn't do much at home when having chemo I did become very good at cuddles and the kids napping with me!

So happy for you, also they must seriously be considering this, the doctors never suggest things unless they are serious! X

How exciting! Come on blood counts, you can do it

what a goal to have in sight. xxxx brilliant news

Awesome news, biscuits....

This is one unbeleiveably amazing thread ... Love the info sharing, some amazing people here....

Great news biscuit - so glad things are going to plan!

Oh that's ace! (I have been on the thread all the way but have NC'd)