He is still really weak and shaky. He is not eating solid food, he is on food supplement shakes, he is trying to have 1 meal of fruit and yogurt, but often can’t. He is on day 66. He has had flu and has an infection in his lung he is sleeping at lest 18 hours a day. I want to ask if this is normal, We do go twice a week to the hospital for blood and see a consultant, who knows all the above, I get very worried
Hi DunnyG212864 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
……. more so as I have had 2 Allograft (donor) Stem Cell Transplants (SCT) June 2014 then Oct 2015….
At day +66 what you are describing is not that unusual… a SCT is a significant life process.
Infections are unfortunately normal and on average post SCT folks have 2 hospital stays over the first year…… my infections did not kick in until 10 month post my second Allo SCT.
My first Allo SCT graft failed within 6 months…. It was not unexpected as the conditioning was a trial due to me being treated for 2 very different types of T-Cell.
My second Allo SCT required full on conditioning and it took a toll on me…… to the point I left the SCT unit in a wheelchair due to me being in bed for about 3 weeks as I developed heart issues and ended up in critical care.
My stomach lining was also stripped so I could not eat regular food so I basically lived on small, hourly good quality, liquidised, high protein home made soups….. i hated food supplements.
This lasted for about 4 months but near the end my wife introduced some soft food like mash and gravy, mince beef etc…
Before I left the SCT unit after my second Allo SCT we sat with my CNS and agreed that my wife had to show me tough love….. so I had to get up every morning, had to have a shower every morning and had to slowly build up some activity.
These signs are everywhere in our SCT unit……
…… I was a month away from my 60th birthday at my second Allo SCT but I basically left the unit with the body of a 90 year old……. The journey back to fitness was long and painful…….
The bottom line is the less he does the more fatigued his body is going, his muscle loss will get worse to getting back to full recovery will just get longer.
My Consultant told me that going through the SCT process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months to this point in time….. and this was done without any training.
Think about doing the London Marathon and boxing Mike Tyson without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality.
Not giving yourself enough time could be a backward step.
Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.…..
My SCT consultant gave me this basic percentage scale for classifying where I was on the recover journey.
50% = when in the hospital going through the transplant process.
60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepare food. Reliant of others for preparation of food.
70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.
80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.
90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.
100% = No physical after effects and able to do multiple tasks including being back to work.
She also said on average recovery time-line is about 6 months with your recovery improving about 10-15% per month post SCT
This is an average time-line….. with general acceptance that when in the hospital going through the SCT process we are physically at about 50%…… any less would indicated some comorbidity issues like pre-existing health conditions that may reduce the 50% starting point and possibly add a month or so onto the recovery end…..
For example I have Asbestosis so this was looked at very closely and due to my prognosis was seen as an accepted comorbidity…… so I went back a good 10%…… other issues could be blood cancer type specifics, genetics…..
Oh no, you have to ask questions…… every question…..
If you don’t you are basically trying to navigate a maze, in the darkness with no torch.
Our great CNS was like our mother hen and she was happy to answer questions and help out as was my various consultants.
They would want you to ask all questions…… rather than you keep quiet and further down the line they find out something that they need to act on…… but it’s been left to develop.
The first year post SCT regardless if it’s an Auto (own cells) or an Allo (donor) things can change ever so quickly and these need to be acted on ((hugs))
