Hi, hope the holiday period is as good as it can for you!
I wanted to just update my situation and see if anyone is on the same journey.
After a 3-month bone marrow biopsy early Dec, it was seen that there where abnormal cells, so after another biopsy where they took a piece of bone! I got that dreaded phone call from my consultant saying I had relapsed. The good thing is that there is further treatment, a couple of days later I was in hospital, starting the first of two cycles of FLAG Ida than hopefully to have a Stem cell transplant (as long as a donor can be found) although I had not had this treatment before I have had 4 cycles of intensive Chemo! And know what to expect. I was told this was stronger the pervious treatments.
Currently in hospital and finished Chemo and now Neutropenic, similar side effects from pervious treatment and we all know there not great! Now awaiting for bloods to recover (3-4 weeks), but as I have caught COVID (in hospital) I have been isolated with no visitors over the Christmas period! Not great but the team on the ward ha made it as good as possible.
If anyone is going through or been through the same and can give any insight to the process would be good especially the Stem cell transplant process as it will be the specialist team who will update me on this but that could be next month!
Stay Positive 
Gman (Garry)
Hi Garry 
Great that a donor has been found for you. Over the first hurdle and a positive step in this new journey!
Ha, I do try to be 
. Perhaps not so much this week: 3 appointments - and on three separate days - so it'll mean trudging down to the infirmary later for a bone marrow biopsy 
; a (first) visit to vascular department on Thursday as part of their, so far unsuccessful, endeavours to eliminate me having graft vs host disease; finally, on Friday, back for my routine fortnightly appointment for obs etc!
Keep cheerful and positive!
Hi Falicita,
Hope the week of appointments are not going to bad and they are turning out to be successful.
I have just received my latest bone marrow biopsy results back and MRD negative so on for SCT early March which has been brought forward! May have to go from one hospitial to another where SCT being performed. But good new
I am keeping cheerful and positive
Take care and keep us updated with results from this week.
Garry (Gman)
Hi Garry Gman good to hear that progress is being made.......
I was the same when I had both my Allo SCTs in that I am in Inverness but my SCT unit is in Glasgow so my wife basically had to move down to Glasgow during the 4 weeks for my first Allo and 7 weeks for my second........ the 8hr round trip drive was not an options.
I was on very high levels of antihistamines as I have animal allergies so this reflects on problems with some of the meds I was getting so I did sleep a lot so at times I would not know my wife was there but it was a good excuse for her to go shopping in Glasgow ;)
Thank you
I think isolation is 4 weeks, but sure that could change during treatment. Sounds like that most people going through SCT have a lot of fatigue.
But a means to a end
Definitely means to an end . You're right: 3-4 weeks (ideally) post transplant if it all goes swimmingly. I was including the prep week prior to transplant, plus, in my case I tested positive for covid during that prep week: it was a false positive, but nevertheless delayed my treatment by a few days, and at the end there were a few niggles which they like to sort whilst there rather than risk having to readmit.
Yes, fatigue is part of the process... That goes on for a while. Probably a long while, but does get better with time and a lot of effort from the patient! 
Hi Gman as you know I had 2 Allo (donor) SCTs and after my 4 weeks in the SCT unit for my first Allo I jumped in the car and drive the 4 hrs home and had little of no fatigue….. I was fit going into SCT even although I had been through a lot of chemo and I had an exercise bike in my room over the 4 weeks and my consultant said that this was the main reason I recovered very quickly…..
I had issues during my second Allo SCT so was not able to be active so this is guarantee to have an effect on the body and increases the fatigue making the recovery longer.
My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.
Think doing the London Marathon 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
Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.….. at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…..
There are sign everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years
My consultant also gave me this basic 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 prepaid 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 the recovery is about 6 months with your recovery improving about 10% per month post SCT
Hello,
Thanks, it’s good to hear other’s experiences and know what to expect, for me always helps.
