Acute lymphoblastic leukaemia

A support group for anyone affected by acute lymphoblastic leukaemia (ALL) to come together, share experiences, and ask questions.

NEwly diagnosed

Minimouse1
Posted by

Hi jalola

As highlander says re the the neutrophils they can go up and down even after chemo is finished..totally normal to.  I finished round two two weeks ago and mine improved week one then took a nose dive, in the end they gave me an injection to help them out so I could start round three.


I just have the results of my second biopsy and am still in remission so it wasn’t the leukaemia cells coming back..


My friend here (two months ahead of me) was never in remission at the the biopsy’s but she has gone on to have her transplant and is now at day 100 recovering really well so it can also just take time to get rid of all of those pesky cells and will still be ok! Xx


Big hugs xx

Jalola
Posted by

Hi Highlander.

Thankyou.

All makes sense.

Sorry for all these questions . As someone who suffers health anxiety and panic disorder... I struggle since being diagnosed with leukaemia .

I notice my heart rate goes up and down a lot....

Thought it was anxiety but sometimes I get it after walking up stairs.

Is this kind of breathless fatigue normal during chemo?

I thought it was because I needed a blood transfusion .... but it's not improved since

Has anyone had an increased heart rate.... and a bit of breathlessness....

... 

Thankyou 

Jalola 

Jalola
Posted by

Hi minimouse.... thankyou .

I'm glad to hear you are still in remission

And thankyou so much .... telling me of your friend and her experience.  

Means a lot to hear all these experiences and know everyone is different.


Jalola xxx

Thehighlander
Posted by

All questions welcome.

Physical and Mental Fatigue is just part of the journey but trying to do activities to keep both your body and mind active can help a lot. The chemo does slowly ware you down so keep pushing through.

I do TOTALY understand the difficulties of Anxiaty and Pain issues but we have to face up to our demons at times. I had a very very BAD expereance as a teenager with a Dentist (back when you were given gas and did not save your teeth) and have a complete phobia.

Until the last few months following some stern words from my Heamatology Nurse Consultant I have been back to the dentist for the first time in over 25 years!!!. I did have check ups before my two SCTs but it was felt that I was ok to go on but did need treatment done.

I actually did OK and only had to get two crowns and a filling done. But on the first meeting with the Dentist we had a very long descussion about all my treatments and how I am still open to infection and I actually did say to her "I would actually go through all my chemo, radiotherapy and two SCTs again before sitting on this chair"

Keep on keeping on.

Highlander ((hugs))

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

Jalola
Posted by

Thankyou Highlander as always for your words of wisdom .

One other symptom which Is bad

... is that my tummy hurts.... most if the time. Like a dull uncomfortable ache. And so bloated.... every day .... no let up.

Did anyone else have abdominal pain.... quite continuous?


I'm having my first meeting with consultant tomorrow to see how well ( or not) first chemo worked on me. 

Nervous.

Can anyone tell me what to expect at this first meeting?

Will the first bone marrow results give more indication of future prognosis....

I need to hear things

... but will she tell me stats on survival etc

... ?

Many thanks 

Jalola

Jalola
Posted by

Hi all did anyone else take ages for their neutrophils to rise? I finished 2nd phase ( consolidation) and am on day 41 since day one .... my neutrophils ate flat. Not budging. Is delaying everything and worrying me x

Paul1969
Posted by

Hi

I remember getting to around Day 37 and they hadn’t moved. I can’t remeber how long they took after that as I discharged myself as I was so fed up in the ward. Within a week of being home and having the injections each day to stimulate production they had increased.


They will get there don’t worry.. 

Paul