Hi @Summertime Awk no not again!! You and I seem to be following each other 
I have another week of this oral Chemo and my checkup is the 15th September. So I donāt even have a date as yet. I have found these 2 cycles of Chemo a bit tough just no energy at all and really low mood. I wish they had never told me that they hoped to do the transplant late May early June as I has sort of set my hopes on that and was well prepared. Now Iām just in limbo and sort of just wish they donāt give me a date and just ring me to say a bed is ready. Thatās if I donāt need another cycle of these toxins! 
. @ChrisCKW and @ Lynn seem to be doing ok Thank God. Our day will come xxxx
4 Likes
Hi @Summertime, my chemo is different to yours but lost most of my hair after the chemo conditioning for the stem cell harvest. I have a few really sparce hairs that I have left very short but noticed that some of my eyelashes have just departed now so looks like the chemo might have delayed effects. Canāt wait for hair to grow back !! Xx
4 Likes
Hi @ChrisCKW, sounds brilliant, looking forward to haemoglobin rising too. Platelets are pretty good but would like the whole set! Hope that all will be well for biopsy on Tuesday. I think mine is coming up but havenāt got a date as yet, argh hate them xx
3 Likes
Hi @Danmar, I hope you get some good blood results soon, although our treatment is different to @Summertime and @ChrisCKW I donāt think itās too bad all in all. Maybe a few days where sickness gets the better of you but they do try to get on top of it as soon as possible. Iām just waiting to get my haemoglobin to catch up now but Iām feeling just a little more human every day. Your time will come and you will be hot on our recovery heels. Xx
3 Likes
@Danmar Itās a strange feeling being in limbo, I do too. But I feel quite well thankfully and have to keep reminding myself I need to keep away from people and keep safe.
I really hope you will get good news on the 15th 
.
xx
3 Likes
@Lyn99 i bet you canāt. I should think once the transplant is done, your focus is on getting back to some kind of normal.
The weather looks decent this week so hopefully you can get outside a bit and gets those legs working 
.
Have you still got your Hickman line?
Xx
3 Likes
Hi @Summertime
I seem to have had different chemo too. I had 4 cycles of Azacitidine (7 days of sub cutaneous injections in arms tummy and thighs every 28 days). This was to kill off leukaemia blasts in bone marrow. No hair loss but Iām still badly marked from reaction to injections.
Then in hospital for the STC. As conditioning treatment had 1 day of the chemo drug thiotepa; and 3 days of busulphan and fl (something). Then on to anti rejection drugs ā¦ then actual STC (day 0)
My hair started to fall out about 14 days after the start of the thiotepa.but not in a crazy way. I had it shaved after I woke with a clump in my mouth. I thought it would be ironic if having survived cancer, chemo, chemo, SCT I then choked to death on my own hair.
Dr Crawley said Iād prob lose eyelashes and eyebrows- but itās not happened yet and today is day +27,
I never did lose all my hair, so I have small bald patches on scalp and lots of soft fluffy areas.
I think we all react differentlyā¦
There are false eyelashes called CLashes esp designed for post chemo for people whose eyelashes have fallen out. Of course I bought some and havenāt used them yet! Xxx
3 Likes
@ChrisCKW oh yes thatās different to me, I have been on the UKALL14 protocol. I started losing hair about 4-6 wks in, then my friend gave me a close cut. Itās pretty much stayed the same so I havenāt actually lost it all, yet. I have been quite cool about it actually, which has surprised me. I got a nice wig early on and wear that most of the time. Wonāt bother in hosp tooš.
Made me laugh about waking up with a mouthful of hair -was the food that badš
Are you going back into Addenbrookes now for check ups etc? Xxx
3 Likes
Yes, there tomorrow for BM biopsy and aspiration plus blood checks. Back on Friday, then it will be once a week on a Friday until they are happy to reduce visits down.
I guess the chemos relate to what blood cancer you haveā¦
Sorry, didnāt keep any hair - or Iād have sent you some as mid morning snack! 
I think the food is poor but my taste buds had been affected by the earlier chemo, then the conditioning chemo. If you are on different regimen then maybe it wonāt be so bad for you xx
2 Likes
Hi @ summertime, yes still have Hickman line in. Should be mid September when its removed or once blood counts are back to normal. Iāll be glad to see it go. I hate looking at it in the bath. Bit of a reminder as to the last few weeksā¦xx
4 Likes
Ooh yes I betš„ŗ. Not looking forward to it, actually not looking forward to any of itš wake me up next year please xxx
2 Likes
@ChrisCKW good luck tomorrow, plenty of deep breathing š®āšØ xxx
2 Likes
Hope tomorrow goes ok X
2 Likes
Thank you @Summertime 
and thank you @Nichola75
Xx
2 Likes
How did you get on @ChrisCKW look after yourself and spoil yourself
1 Like
Hi Chris. How are you and how did you get on at your appointment today? Thinking of you xx
3 Likes
Hi@ Lynn how are you doing? Xx
3 Likes
Hoping @ChrisCKW and @Lyn99 are both doing ok.
I have some more disappointing news. I spoke with bmt team and apparently my donor has gone off on another holiday so my transplant has been put back another 2 weeks, looking like mid to end Oct now. They said sheās home on 20th and they will give her til 28th to commit and give a def date, if not they will go to my back up donor.
Frustratingš but at least I have option I guess so shouldnāt be complaining.
Nurse specialist said she will spk to my consultant to see if I need another round of chemo to keep me in remission.
Waiting, waiting, waiting.
On a positive note, my daughter is due to give birth end of Sept so I will be around for that and will hopefully meet our new little man 
5 Likes
Awww @Summertime how disappointing for you š„² I donāt know what to say. I just hope that it all is very positive when your donor returns from holiday. Just keep thinking of that wee bundle of joy thatās about to come into your life!!! Stay strong xxxx
4 Likes
Oh, @Summertime that is more than disappointing news, you must be absolutely gutted, especially with the rest of the SCT gang being a bit ahead of you.
That waiting, waiting, waiting is the absolutely worst thing.
Mind you it will be amazing if you can be around for the new arrival arriving.
Spoil and really look after yourself.
3 Likes