Does anyone who has Acute Lymphoblastic Leukemia has experience of the UK ALL Protocol 60+ course of treatment. It seems to be a less aggressive type of treatment but after having the 2 stages of induction it seems as though my husband is not in remission and cannot continue to intensification stage. We are discussing what will happen now with the Consultant tomorrow. I was going to ask about having UK ALL14. Has anyone aged 60 + had this treatment and how did it work.
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Hello, I am currently on that treatment but Iâm younger. I am sure there is a lady who is older that was on it too but she was a little ahead of me. Think she is having a transplant now. Not 100% sure, I would need to check previous posts. I am sure she will answer though as she was very helpful with me.
Fingers crossed it is the right pathway for your husband. Xxxx
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Hi just thought I would update on how my husband is. So far it has been a rollercoaster of emotions, with the stresses of diagnosis, the worries of Covid and stress trying to get him a â3rdâ vaccination and all the worries of treatment, side effects and staying in hospital. But so far it hasnât been as bad as all the horror stories you can read on the Internet, After Induction and Intensification treatment he is now in remission and recently started 3 months consolidation treatment. He is feeling quite well able to get out on walks, has an occasional glass of wine/beer with dinner, last night we joined family on daughters front lawn to watch Round Table pull Santa on his sleigh down the road and had mulled wine and mince pies. We also have one or two things planned before Christmas that we will do with care ( so glad they are making people wear masks in more places). His main side effects have been chronic gout, constipation, fatigue and some joint and head pain caused by Vincristine. He has had some blips with his bloods but turned out OK. We know its still a long road and we will probably have a few bumps on the way and as after consolidation he will have 2 years maintenance but it doesnât seem as scary as 4 months ago.
My one bit of advise to anyone starting this journey is not to go to Dr Google ask question to Consultants and health professionals.
So today life seems good. Just got to hope it continues.
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@summer123 some very good advice around âDr Googleâ! Itâs really good to hear your husband is in remission and that heâs feeling able to do some things he enjoys! We wish him all the very best. How are you feeling? It must all be a lot to process.
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Hi @summer123, interesting when I look back at your earlier posts and how you were feeling and thinking.
Yes Dr Google is not a very good idea just stick to reputable sites like Blood Cancer UK.
Your husband seems to be doing well.
Look after yourselves and spoil yourselves.
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Hi Erica, yes the first few weeks were incredibly hard, we were very much gloom and doom and could see no future. I was desperate for someone to say everything will be fine but that wasnât going to happen.
Everyone has different journeys and ours so far hasnât been too bad, but we are not naive enough to think everything will be ok and he will be cured. We have been told it cannot be cured but the aim is to keep him in remission as long as possible.
Life for everyone has been difficult and different for the last two years and continues to be so, we are beginning to accept as lots of people with cancer have to that our lives are even more difficult.
As I said recently we have had good days but sure we will have some bad days aswell. One day at a time!!
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I am okay thank you. Currently just finished consolidation cycle 1 and still in remission. It has been a long slog of 7 months and to be honest, I am exhausted from it all. Had to be in hospital as I got a fever but home now and back for bloods on Monday.
Hard to leave my 2 children (theyâre 5 and 10) and just hoping everything goes okay so we are all together for Christmas. I donât take any day for granted.
I have been feeling a bit down and miss having peace of mind. Wish I could sit and enjoy an evening and laugh again. Hope it will come back. I am learning mediation so that does help. Just got to leave each day and not worry about every ache and feeling I get. I had a seizure at the end of cycle 2 so I think I worry about everything now more than I did!
Anyway, thank you for asking. I donât often come me on here now but I suppose I should. You feel very alone and itâs nice to hear from others sometimes.
Thank you again xxx
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Good to hear your husband is in remission and doing well. Yes hold on to those good days! Xx
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Hi @Northernsmito26, great to hear from you with your update, yes, it can be so lonely out there as we donât see many others in the position we are, I felt the only one in the world.
I think we are a very supportive community on here, no matter our diagnosis, I have found people on here understand me as sometimes family and friends cannot.
Just think what you and your body have been through, you must be absolutely exhausted, I bet it has been a long old, often scary, 7 mths.
It must be so hard for you missing your children, which must compound you feeling a bit down and yes, wouldnât it be lovely to have peace of mind.
I admire you learning meditation, it is something I have always struggled with.
Be ever so kind to yourself and please keep posting and donât forget the Blood Cancer UK support line is there if you fancy talking to someone.
Does anyone else know those feelings?
I was diagnosed with ALL aged 64 in October 2019 and was entered onto this protocol. I was given the choice between 2 possible treatments, either a more aggressive form to âcureâ the cancer or a milder form to try and manage the disease. I opted for the more aggressive pathway and completed the 1st induction phase. However at the end of this phase iwas very ill with severe peripheral neuropathy and kidney problems. Therefore after discussion with my consultant, it was decided I should change pathway as it was thought my body could not withstand further aggressive treatment. I the followed the less aggressive pathway and completed all the chemotherapy in July 2022.
I am currently in remission and having check ups every 3 months with my haematology consultant.
The peripheral neuropathy has improved slightly since the chemo finished, but have now been diagnosed with stage 3 chronic kidney disease.
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Hi @Gerry a great big welcome to our forum and I am so glad you have posted.
It must have been tough for you being diagnosed just before Covid struck and then having your treatment during Covid times.
What a dilemma for you having to decide which treatment path to follow, I certainly do not know what I would have decided on.
I am so sorry that you have now been diagnosed with Stage 3 chronic kidney disease, you certainly have a lot on your plate.
Donât forget if you would like to talk to the Blood Cancer UK support line they are on 0808 2080 888.
Be ever so kind to yourself and look after yourself