Welcome to the forum. It sounds like you are approaching everything in a measured and informed way - well done.
We had the transplant conversation and it was awful as they have to outline all the risks and stats. Someone on here offered a great suggestion to flip the stats to the positive which I liked. Hard to do when they are talking so much information at you. I said to my daughter before the talk - you will still be you at the end of this conversation. A strong and positive individual.
Danae has not yet needed a transplant as she was in remission at the end of the chemo rounds. It is still there as an option if needed.
We do meet people of all ages who are post transplant at our regular clinic appointments. There was a gentleman in his early sixties at clinic a few weeks ago. He was 5 months post transplant, looked fantastic and (as an avid cyclist) was planning a training regime to get back in his bike
I had the first transplant meeting earlier this week and it went well. The good news is they have 10/10 donor options and are going to be going through the process of contacting them and carrying out any further tests with a view to going ahead with a transplant around mid-August potentially, although obviously subject to change.
The consultant was positive about my journey so far as Iāve been in remission since the end of round one and while still MRD positive the levels have reduced a lot between round 1 and 2 and are now very low, so the treatment has been working and side-effects have not been too bad. He did make clear that achieving MRD negativity pre-transplant would be a big bonus and improve the chance of success.
There were, as expected, some scary stats about the risk of life-threatening complications during or after the transplant but as someone said earlier in this thread it feels better to flip the stats the other way round.
Iām getting a bone marrow biopsy for the end of round 3 next week and I still wonder what would happen if I was negative. Would transplant still be the best route? My consultants are telling me it still would because it was still positive at end of round 2 and that tends to be the main point for making decisions about risk of relapse. I guess I need to wait and see if it happens and have the conversation again if required. But as it stands Iām now planning for transplant because it seems to be the best hope of beating this.
Wow @MikeB you have a lot going on, perhaps now is a good time for you to write down all the questions you might like to ask.
Please do let us know how you get on.
Really look after yourself
How are things going with everyone? We were at clinic yesterday - bloods, ecg, consultant appointment and then getting prescription from hospital pharmacy.
So, Danaeās blood counts are good, ecg showed her heart is beating (this is what Danae reported to me after coming back from ecg - that girl! ) Consultant is happy
The hospital pharmacy continues to be a nightmare - told a 20 minute wait but we waited well over 90 minutes . But they did have Midostaurin in this time so all good.
We also saw our āfriendā who is now 7 months post SC transplant. He is a keen cyclist and shared that he is back out on his bike. He looks great. So lovely!
Next appointment is mid July for routine bloods and biopsy.
We are starting to get very excited for our holiday to Italy (end of August) @Erica - The DD hit Italy ! (Possible movie title?)
Think about you all often and hope life is treating you kindly.
Hi @SarahMum great news for you both that Danaeās Consultant is happy with her and you got her meds, eventually.
My mind boggles at the DDās hitting Italy, it is definitely an adventure movie title and the film would have unbelievable cinema graphics and a very happy ending.
I would be sitting on my suitcase by now, I Know, I know you are not going to August,
Take care and be very kind to yourselves xxxx
I hope life is treating you kindly. I have checked in with some of the regular posts on here. We think of you often and I always update Danae as to whatās going on for everyone.
I have some news re: Danaeās Uni results . The Spring she took (online at home) the exams that she missed at the end of Yr2. She got her results last week and it has been confirmed that she finished Yr2 with a First! Clever girl . I know I am her Mum but I am extremely proud of her. Thatās no mean feat for anyone without cancer getting in the way?!
In true DD style we went out and celebrated with a few cocktails !
This week she has had her regular 3xmonthly bone marrow biopsy. So we know await the MRD results from Guyāsā¦. Never gets any easier?!
But for now we live in today and are thankful that her bloods were good I also have a curly girlie! . Her hair is growing back lots and it is lovely that she wears a wig if she wants to but not always. Check out the curlsā¦
Oh, thanks for the picture of your very clever girl with curls, I reckon it is all those cocktails @SarahMum
You are entitled to feel very proud, both of you.
No, appointments never get easier for either of you
Oh those cocktails look good, enjoy.
Yes, live in today and in the words of Rod Stewart āLive the life you love and love the life you liveā.
Keep posting, please do let us know how the MRD results from Guyās and keep being a DD.
Amazing news! Huge congrats to Danae. Love her curls too. My hair was curly when I was a kid then went poker straightā¦we always want what we donāt have donāt we?
I also spotted Danae in the latest Leukaemia UK regular giving appeal email. It was funny when the email came through I almost thought āI know her!ā Even though of course it is only through your posts on here.
I hope the good news and cocktails keep flowing for you both.
Yes I have followed Danae on Leukaemia UK too @SarahMum please do thank her from me, she is doing a great job raising the profile on young people with the conditions.
How does she have the time whilst getting a first?
Thank you @SarahMum for supporting others on here too.
A very clever curly whirly girly with such a wonderful mum, a true DD
A friend of mine got Acute myeloid leukaemia (AML) at univ and had a stem cell transplant. She is now fully recovered. I donāt know why chemo wasnāt enough on its own but she had to have it to clear the way for the stem cells.
Good to hear the positive outcome for your friend @Androcles . It is usually rare genetic mutations that mean some individuals require a stem cell transplant.
I hope everyone is doing okay and enjoying our varied Summer?
I come with the recent MRD biopsy results updateā¦ NEGATIVE . Danae remains in remission
So, the holiday to Italy is on! So is her return to Uni in September. Her bloods have been healthy and she is looking gorgeous!
She recently went to the Boardmasters festival and had a great time. Gok Wan was DJing (he has his own family links to leukaemia) She held up a message and he invited her up on the DJ stage! . He was soooooo lovely to her and she hasnāt stopped talking about it since
I am very emotional and thankful for her news.
We send love and positive wishes to everyone. Please keep posting and Danae asks about you all often.
This is so incredible! What a boost for you both!!! May you both ride high on this good news. Will be thinking of Danae as she heads back to uni. What a role model! Keep going
Oh @SarahMum and Danae that is brilliant news and it is great to have a good news post.
The Boardmasters festival sounds as if it was a really special moment for Danae.
Lots of love to my DD xx
) Consultant is happy 
. But they did have Midostaurin in this time so all good.
! (Possible movie title?) 
xx
. The Spring she took (online at home) the exams that she missed at the end of Yr2. She got her results last week and it has been confirmed that she finished Yr2 with a First! Clever girl 
of her. Thatās no mean feat for anyone without cancer getting in the way?!
. He was soooooo lovely to her and she hasnāt stopped talking about it since 
