Hi all
Been a while since I last posted, hoping your all doing well.
My wife had her allo sct in August 21 following relapse in her first diagnosis for AML in Oct 18.
Her team at UCLH have now discharged her from telephone consultations and handed her back to Worthing Hospital who first diagnosed her AML to continue monitoring.
She's due a routine blood test next month and consultation following but she believes that they to may discharge her as it will be almost 5 years since her sct. She is getting a little anxious as she feels that she is being left on her own. I do totaly understand her feelings as having regular calls and 6 monthly blood tests are a comfort for her as she knows people are there for her. I also understand that as she has done so incredibly well following her treatment, that there are likely to be more patients sadly requiring greater contact and treatment than herself. She just feels a little vulnerable with the feeling of being "cut off".
FULHAMBOY
Hi Fulhamboy
This is a tricky one and it tends to be very different across UK - SCT units.
I also volunteer with Lymphoma Action the UKs main Lymphoma Charity……. as a Moderator on their very large (6400 members) closed FB support group…. and I also host 2 yearly Zoom Groups specifically covering all things SCT……
This subject often comes up. We try and have a guest SCT - CNS take part in the Zoom so it’s great to get their first hand feedback on questions…….
Basically SCT has moved on so far over the past 20-15 years that the post treatment follow up has slowly been reduced….. as in my consultants words “Get on with life Mike you know here we are”
My second Allo SCT was in Oct 2015 and I was discharged from seeing/talking with my consultant in June 2018…….. so that was 2 years 8 months.
But I was moved to the ‘Late Effect Surveillance’….. I had full bloods and obs done at my GP surgery, this info was sent to the Late Effects Nurse at my SCT Unit and I had a 10min phone call….. my last call was back in June 2024 and there has been nothing since.
As I had no issues the call was just a chat….. the one thing my GP picked up in 2000 was I was pre-diabetic….. but a change in diet fixed that.
Due to my history I do have a yearly ‘well man’ appointment with the nurse at my GP surgery…… this is full bloods, obs, weight, Asthma check….etc.
This was often done using the ‘Late Effect Surveillance’ request for bloods etc….. but would have been done regardless.
When I turned 65 they added a PSA test and a few weeks ago I was diagnosed with Prostate Cancer…… it is as low a grade as it could be so not an issue and will have regular monitoring.
Do get her to ask about ‘Late Effect Surveillance’ as I was not told about it the day I was discharged….. the letter just appeared a year later out of the blue.
Life time ‘Late Effect Surveillance’ was once the Gold Standard……. But with all things…… things change.
