Maintenance phase... not the walk in the park I thought it would be!

Hi, I too was diagnosed with ALL on 30th July 2018 and know all about and can sympathise with everything you have/are going through.

I had an anonymous donor stem cell transplant on 28th February 2019 and have had to be readmitted twice since. I have also got a lot of side effects which I believe are linked to the medication I am taking. My upper arms in the muscles ache all the time and I cannot get my coat on etc without help. Doctors though are more concerned that I arent developing GVHD and so I struggle on although in the last few weeks these seem to be settling down (fingers crossed).I find that I start to seize up a lot so go for walks when I can which really help and my strength and stamina are definetly improving. 

The isolation is hard especially at this time of year when I would love to join in the Xmas festivities but Im too scared to get stuck in a crowd. I am trying to help my counts along by eating healthy which also seems to be working. 

It is nice though, like you say to not be hospitilized and I am making the most of my life. I hope things start to improve for you. I think we have to be patient (something Im not know for). 

Have a lovely Christmas!!!

Wendy

Dear sazdeal, I have a different kind of leukemia to you but have had intensive chemotherapy and steroids. I also find the steroids hard going, they give me mental energy but wipe me out physically. I got my doctor to reduce the dose as it was effecting my quality of life and my sleep patterns ! And it has not had any effect on the efficacy of my maintenance drug. 

Thank you Wendy. 

I haven't been put forward for a stem cell transplant; no familial match; Consultant felt I was responding well to chemo so had 13 months of intensive chemo instead.

Well done for getting through that, it must have been extremely hard!

I too avoid getting stuck in and being around people for fear of getting sick as the impact on my young family is just too much. Although I am going to see all the family this Christmas... can't help but be anxious about my health but I need to feel apart of things and not self excluding. Fingers crossed my little bit of immune system fights hard for me!

Sorry to hear about the muscle pain. Hopefully the Dr's can figure out what's going on and have something that can help. 

Wishing you a happy Christmas too!

Sarah

Hi Jane

That's really interesting thank you. 

I'm the same, mind is going 100 miles an hour but physically fatigued and unable to function. 

I will pass it by my Consultant about the possibility of reducing the steroids. 

Thanks

Sarah 

Hi Sarah

Sorry that you found us but welcome to ALL section of the website. Thankfully this forum has been quiet recently but there are a few of us around who have had or are being treated for ALL.

I also had a stem cell transplant about 6 1/2 years ago so didn't have the longer term maintenance chemo.

Whilst I was being treated I reacted to one of my chemos so had to postpone my transplant for 4 months and I went onto maintenance chemo then for a while.. I found it OK but I was in the midst of treatment so everything was relative to the other treatments I had or was about to have. Once I had come out the other side I felt tired for a couple of years if I am honest. It wasn't all the time and their wasn't a pattern to it.. Some mornings I would wake up shattered , others I wouldn't. Some evenings I would be asleep on the sofa by 9.00pm others I would be out having fun.. Gradually it seemed to normalise again and I can only put it down to all the treatment that i had had and my body just taking the time it needed to rest.

When I was on steroids at different times I struggled to sleep.. I can remember one Christmas day morning being wide awake at 3 in the morning and getting up and watching films.. I guess all the medications effect us all differently.

I would speak to your medical team as it may be they can alter some of the doses which will hopefully give you some more energy!! 

Good to hear you are enjoying your time at home with your family.