Acute lymphoblastic leukaemia

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

What can we expect next?

Suziefloozie
Posted by

Hubby has just finished Phase 1 this week ending up having 7 lots of chemo (incl intrathecal into his spine, aspiriganase, methotreaxate) in just under 4 weeks.  He has really been through the mill which I am guessing is normal but I have never seen him so weak.  The doctor say the Vincristine chemo is likely to be the cause. He has lost 9kg since this started and eating is hurting his stomach not surprising with hospital food.  They have put him on these milkshake things as he has lost his appetite and feels generally terrible.  Despite this doctors seem pleased with his progress and his numbers.  Unfortunately his sister wasn't a match but we are not sure yet if he will need a transplant.

Is it normal to be so grumpy to your loved ones?  I hate to see him like this and if only we knew what was coming next.  He is about to embark on Phase 2 but not sure what that is.  Drs say he is going to still be in hospital for about another month.  He just wants to come home as he is bored.com.

I'm feeling a helpless wife :( 

Jalola
Posted by

Hi Suzie, 

I can't help you yet.... with what to expect....

As I too have just finished phase 1 last week.

I have b cell acute lymphoblastic leukaemia. 

I am  going to get my bone marrow results next week and then will start my second lot of chemo.

My sister also is not a match. They are looking for a doner as i will definitely need a transplant.


All I can say is that if your husband feels anything like me... he will be feeling so many emotions inside.... 

anger, resentment sometimes, disbelief still. And just sadness....

I do let my emotions out ....and cry a lot.

But I have pushed those closest to me away sometimes..... every second I feel different to the next.

It dosnt mean I don't love everyone around me.

And I absolutely know I have so much love and support around me. My family are amazing

And deep down your husband knows how much you care and loves you and really does need you....

Patience is needed from your husband and you.

Make sure you have support from family and friends too....


Take care 

Jalola

Paul1969
Posted by

Hi

Its been a while since I had my treatment so it may have changed but the drugs all sound familiar. I was on the UKALL14 trial

The below is my story and how I was with round 2 and 3 but everyone's journey is different.. My experience was quite a tough one your husbands may not be..

I went into round 2 a fortnight after finishing round one.... I had the Peg asparaginase in round 3.

My experience was that this is when the weakness and the sickness really started to hit me and when my hair fell out towards the end of it!

So if he isn't on anti sickness meds yet ask about them.. There will be one that works for him so if the first type doesn't then ask for a different sort and if he comes home even if it is for a couple of days early on in the round make sure he gets anti sickness tablets (I learnt that one the hard way!)

Intrathecals are scary as you don't know what to expect.. I can honestly say the before my first one it was probably the most scared I got during all of my treatment. It isn't painful apart from the initial sting of the anesthetic. Make sure he lies down flat for as long as possible afterwards... 1-2 hours if possible. It can give bad headaches but lots of coffee / full fat coke before and after can help.

Unfortunately I still got intense headaches which made me sick.. In the end I would have a Desmopressin Acetate (DDAVP) injection beforehand which really helped. (Its the same drug they give children who keep wetting the bed!

I was in for 35 days on round two. They said I could be OK to do the first couple of weeks as an outpatient (staying at the hostel). I managed two days before i was admitted. In the end my neutrophils still hadn't reached the minimum to be discharged at day 35 but I had really had enough of hospital and discharged myself and went home.. I also picked up the BK virus which is present in many of us but doesn't manifest until your platelets get really low.. not pleasant and painful (bladder type infection) but soon disappears once they can get enough platelets into you!

Asparaginase I had in round 3. The drug itself was OK but I did have a severe reaction to it (which isn't common) but it put me back in hospital for 6 weeks as I had acute pancreatitis.

Along the way during round 2 I lost my appetite and so lost weight. I used to have to drink the build up protein drinks as well.. Much better when they are chilled!

I am sure I was up and down with my moods and sometimes just couldn't face any visitors apart from my wife.. and sometimes she would be there for hours and I would be asleep!

Sorry if the above reads like a horror story but round 2 can be tough and the accumulative effects of the chemo add up..  BUT.. take one day at a time and you get through it and you will get out the other side have the stem cells and move on with life...

Hopefully someone will post shortly about how they breezed through round 2 with no problems at all!

Suziefloozie
Posted by

Hi Jalola

Thanks for your comments its useful. Hubby has T cell ALL which doctors have said quite a rare form of Leukemia especially in adults. 

He is different each day up and down and loads of mixed emotions but we will fight this awful thing together.  As a cancer sufferer myself when i was very young i got thru it and he will too. 

He was given a blow yesterday not being able to get back to work for some time which he is not happy about worrying about the financial side of things which he shouldn't but its inevitable. 

Will he be entitled to any disability allowance does anyone know? Not sure if his company will keep his job open for 6 months and unlikely to be on full pay anyway

theloneranger
Posted by

Hi suzie,

Sorry to hear about your husband. I was diagnosed with b cell ALL way back in 2011 and currently coming up to 4 years off treatment and in remission.

After the induction phase of chemotherapy I didn't achieve remission and my siblings were quickly sent for and tested to see if they were a match for a stem cell transplant, unfortunately they were not. A further slightly stronger dose of chemo got me into remission so I never ended up needing a transplant.

From the day I was admitted to the hospital until I left it was 14 long weeks and that was without any infections. The doctors couldn't let me go home between cycles because I wasn't in remission and without starting straight onto the next cycle the leukaemia would have grown dramatically so I had no choice but to sit tight in the hospital.


I,like your husband had trouble with my moods. The steroids that they use can cause mood swings. Also I was very cross that people were being admitted,having chemo,going home and coming back in for their next cycle and I was still in the same bed!! The main thing for me was complete boredom I felt OK but couldn't leave the ward and the isolation from friends and my nephews really impacted my mood. Also the sleepless nights on a loud ward where drips were beeping and patients were buzzing through the night didn't help either! All these things along with the fear about the leukaemia,future,career etc further impacted my mood.


As time went on and I eventually left hospital and got a few good night's sleep and caught up with friends my mood improved dramatically.


Your husband should be entitled to PIP. Back when I was diagnosed it was DLA and my consultant along with a macmillan benefit advisor filled in my forms and I was awarded the top rate. I eventually left my job because I had a lot of complications and they couldn't keep my job open for me for such a long time.


It might also be worth trying to apply for ESA but I think this is only for when your sick pay has finished.


Theloneranger 

ELS1980
Posted by

Hi Susie

I can totally relate feeling helpless. I did with my husband too. There were days where he was very snappy and irritable and being the closest to him I got the brunt of it. His mood swings mainly happened during and after his transplant I think it was because he didn’t have to stay in hospital at all during his phases so his first proper stint was his transplant. 


With regards to help money wise it’s definitely there. We made the mistake by waiting ages to apply for anything. He got a grant for clothes because he lost so much weight, he was awarded the top amount for PIP. He also got Employment and Support Allowance once the statutory had ended. He was off work for a total of 14 months. Make an appointment with Macmillan and they will help you with any forms and tell you what you could be entitled too. 


Emma xx