Day 100 appointment

Great update Kirsty and let’s look for good results to come in.

Oh Sports Days - I love going to see the granddaughters and I have to say that I do become rather competitive and focused on them winning ((hugs))

Appointment went well enough; they still don't have the results of my bone marrow pertaining to the FLT-3 and NPM1 marker which I'll be honest is the thing I'm most anxious to get back. However! Chimerism is 100% donor and the consultant has said given the level of GvHD I had and the fact that there is no evidence of my own cells within the bone marrow, that he's optimistic that it has indeed been wiped out. He did also say if it hasn't then it's bad news as my body took such a battering that he doesn't think I'd be fit enough for a second transplant. Eek! Steroids were dropped again but everything else is staying the same, and he spoke to me about immunizations. All the standard stuff!

Hi Kirsty,

This is fantastic news! I’m really pleased for you especially after all you’ve been through.

Consultants in my experience have an excellent aptitude for an idle comment which they don’t understand can have a big impact on the patient. I wouldn’t worry about the what if’s though, just focus on the path in front of you, one step at a time. It’s good the steroids are being reduced - watch out for yourself as they are being tapered as my body went a bit haywire as I came off them and no doubt you’ll have been on a high dose, so take it easy. 

But you are doing great, and you should definitely celebrate that!

All the best

Greg

Hi Kirsty, 100% way to go..... and such a encouragement to get. So just need FLT-3 and NPM1 (as though I know what this means) to come back saying the correct things.

Did you get your appointments reduced and/or transferred never home?

Today is the one year anniversary of me being discharged by Dr P at the QE.

A little celebration all round may be in order. 

They've agreed to start shared care with my home hospital which takes so much of the travel stress away, especially as I'm still attending the beatson twice fortnightly for ongoing ECP treatment.

Congratulations on your anniversary! I still can't have a drink but I definitely think you should! And Paul, thanks for the heads up about the steroids - my next clinic isn't until the 4th of July now because of the way the ECP appointments fall so I'll be due to have them dropped again by then, so hopefully that gives my body a nice long settling down period at this new level. Came home and ate the biggest bowl of macaroni cheese I've ever seen to celebrate and now I think I might just go for a nap!

Oh that is great new Kirsty, the drive from Edinburgh to Glasgow and back can be hard work as it is always busy and you are basicly looking at 3-4 hours round trip without getting your treatment...... and finding a parking space at The Beatson.

Have they said how long you will be having the ECP Treatment. I have never had it but I do find it all very Science Fiction..... how long does each treatment take?.....do you do two days in a row....... sorry for the questions.

A big bowl of Mac-cheese is a great reward ((hugs)) to you all.

They like to remove and process 1500ml of blood per session for me and because they're using my Hickman line instead of a needle in each arm (because I don't have the veins) they pull the blood and return some the entire time before they actually treat it with the photopheresis part, so taking that in to consideration it usually takes about 2.5 hours in total. Which doesn't sound like a long time but it feels like a long time! However,  because it's done in the apheresis unit which is part of the national blood donation service, they get donated free tunnocks tea cakes and wafers so I take full advantage of those with a cup of tea! As for how long they will continue with the treatment I'm currently not sure: I did 16 sessions (twice weekly) and now am on the twice fortnightly protocol, which I believe will stay the same until 30 procedures, but they MIGHT then put me on to their chronic GvHD protocol which is once a month. Just got to wait until nearer the time until I get the full picture of how they think things are progressing- but the consultant today did say he would feel more confident weaning me off the immunosuppression medication knowing ECP was continuing. 

And yes, one day after the other is preferred but the diary doesn't always allow for this so next week I'm actually going Monday and Thursday which means I dont need to attend any clinics next week! 

Oh Kirsty, It does sound a real hassle and long days but it is amazing how they do the treatment.......... and I do like the 'weaning you off the Immunsuppression' part.

But a bottomless box of Tunnocks Tea Cakes and Wafers......... OMG..... this is a true Scottish thing right there.

Hi Kirsty,

what a bind! But at least you get fed and watered while you’re there! (Tunnocks surely make up for a lot!) 

hope they can wean you off one of the other soon.   

Hugs xxx