Our 3 grandchildren are aged 12 years (we were young grandparents!) 12 and 19 months old. It’s the cuddles from the babies that I have had to put on hold. We can meet outside though and go to the park. And FaceTime is a wonderful thing.
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Hi everyone - sorry it’s been a long time once I posted. We were right in the think of it for a while. Conditioning chemo and beyond transplant was pretty hard. Frankie had myeloblative chemo which was very strong. Of course he went in not yet in molecular remission so it needed to be strong. The mucositus was worse than either of us expected. Being in that room isolating for weeks was tough on him mentally. However once he started to recover he did bounce back! We we were discharged home 4 weeks post transplant. And had a few days home leave to test out before that! So far quicker than expected. His bone marrow is engrafting and so far no sign of Graft-versus-host-disease so they are bringing him off the immunosuppressants slowly to try and get graft versus leukaemia effect.
Really we should be feeling very pleased, and I am, but we haven’t even had his biopsy result yet so after 11 months of breath holding it’s hard not to maintain that ongoing anxiety. Maybe it will never go!
But this hopefully is the start of a new future. And it is possible to feel hopeful.
@PAW68 how is your husband doing? Are his neutrophils coming up? I have been thinking of you despite my silence!
@SarahMum your stories of your daughter at uni bring great joy. It’s great to picture her doing so well. Frankie is waiting for his a level results - which unbelievably he managed to pull together a special consideration application with lots of evidence - writing essays to submit and sitting papers at home on better days. So in 2 weeks we get to see if he can have his place.
Lots of love xxx
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Great to hear from you again with your update @CatherineofHove
I think your anxiety is so natural mine is never far from the surface and kicks in so quickly and it is always with negative thoughts, never positive ones, and you have got your maternal feelings mixed in as well.
You must both be exhausted you have had so much going on over a short space of time in the scheme of things.
Perhaps just be kind to and really look after yourselves, oh, and please keep posting
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Hi @CatherineofHove I am so pleased to hear that Frankie is doing well, such positive news and I completely get the ongoing anxiety. I think that maybe after all the trauma that we are afraid of feeling optimistic too soon and remain cautious. We’ve been hoping for positive news throughout this awful time and when we eventually got a glimpse of it we felt surprisingly flat!
The Flag-Ida has at long last given us some hope for the future, and after 7 months of “unfortunately the treatment hasn’t worked…..” we have now had the news that 2 weeks post treatment his bone marrow was completely empty! And now a further week later he’s blood appears to be holding its own and his bone marrow has started to show signs of recovery, just hoping that those white cells don’t increase too much- no neutrophils yet!
He did find the Flag-Ida quite tough and got a very nasty and extremely rare skin infection called sweet syndrome. It gave him a painful rash that covered both of his legs. Numerous dermatologists and medical professionals came to see his legs and he became a bit of a celebrity and no doubt the photos of his legs will be used for future training purposes!
He was discharged from hospital on day 16 as he was up and doing his usual walks around the ward. It’s lovely having him back home and enjoying walking outside but I was initially so anxious about keeping him safe at home. Last Sunday I got upset about trying to make sure that he was eating enough nutrients in the food that I was offering to him. I cried nearly as much as when he was first diagnosed and yet we’ve had some positive news at last! It hits you all of a sudden doesn’t it and sometimes out of nowhere.
The next bone marrow biopsy is on Monday and then we’ve been told that if his bone marrow is in recovery then things will move quickly. Not really sure what the nurse meant by that? But they have suggested that he will have another blast of the Flag-Ida and that it could be given to him either at home or on the day ward. I’m not really sure how I feel about that and not sure that I could cope if he becomes ill at home. He always gets an infection during chemotherapy and gets the rigors during the night. Not sure that having to take him in via A&E in the early hours would be the best situation , I would prefer that he was in hospital with the knowledge that he would get treatment very quickly if needed. But he hates being in hospital so much that I want to do what is best for his mental health too.
Does anyone else have experience of having intensive treatment at home or as an outpatient?
Catherine please keep us updated with Frankie”s progress and good luck with his exam results.
Take good care of yourself too.
Paula xx
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Hey @CatherineofHove
Good to hear your updates. Wow, you certainly have been going through it huh? Good to hear you are home and Frankie is recovering.
The anxiety? I think it always sits with us. I still feel anxious (some days worse than others) I literally have to go do something/keep myself busy and pull my mind back to all the positive things 
That’s amazing re: Frankie and A levels. Good luck with the results!
Do take good care and keep us updated when you have time.
Sending love and positive vibes
Sarah
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Heya Paula @PAW68
Thanks for your update. It certainly sounds like you are still on the rollercoaster so all emotions are allowed
My daughter didn’t have treatment at home but she was able to come home in between treatment and whilst neutropenic. I was super nervous about this and I remember crying my eyes out because I felt our home (safe space) wouldn’t be clean or safe enough for her.
She did have infections at home where we had to go back to hospital via the A&E department. We always had to ring her ward first and they would notify A&E which meant we were fast tracked upon arrival. Not the best situation but it did mean she was triaged promptly and her ward were fantastic in coming down and getting her back onto the ward.
Do keep us posted when you have time and I hope the next step goes well.
Sending positive thoughts
Sarah
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Hi @SarahMum , @CatherineofHove and @Toadmum I do hope that you’re all ok?
At long last we have had the news that we were hoping for, but at times thought we may never hear- my husband’s in remission and there’s a plan for him to have his bone marrow transplant at the end of September 
The wonderful donor has been contacted and things are indeed moving forward quickly.
The Flag-Ida (last chance saloon) did its thing and his 2nd biopsy came back clear with no signs of leukaemia and his marrow was healing well- his platelets went up to 350!
So he’s currently back in hospital and on day 4, of his 2nd cycle of Flag-Ida so far so good but his ulcers are starting to give him some gyip again which is affecting his appetite and making him feel sick. 
But as long as he’s fit enough on day 7 he should be able to come home to recover.
His ulcers won’t delay his transplant but will determine the conditioning chemotherapy that he has.
I know that this part of the forum is to support those whose treatment has not worked, but as I originally looked at this thread to find some positive news I really hope that others in same position are able to find hope from both mine and @catherineofHove’s journeys. However, it’s not over yet and there’s still a long way to go before we can breathe easy- if that’s ever going to be possible ( sorry but negative thoughts still find their way into my head)
Take care everyone and thank you all for your support xx
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@PAW68 Thanks for the update. Great news on remission! . Sounds like everyone is cracking on with next steps for transplant.
It is perfectly normal to have both positive and negative emotions. Take good care of yourself and your husband. Each day as it comes…
Sending love and positive thoughts xx
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Hi everyone, I’ve just found this thread as I’m currently in Hospital recovering after my first round of FLAG ida. Its really encouraging to hear the positive stories and know I’m not alone, its a tough journey. I was diagnosed with Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) with an FLT3 mutationin December 2024 and had 4 rounds of chemo including HiDAC before being given the all clear in May. The plan was to keep me on Quizartanib for a few years as a stem cell was deemed too risky due to complications in round 1. Unfortunately I relapsed and was back in Hospital at the end of July with no gene mutuation now but havingFLAG ida. Its nearly 4 weeks since treatment has finished and I’m due a bone marrow biopsy tomorrow which I’m praying will be clear so I can have a second round then go to a stem cell transplant. I only have a 9/10 donor match so really hoping it works to try and get this under control. I’ve managed some day leave this weekend to celebrate my middle daughter’s birthday which has been lovely. Its just a waiting game now to get neutrophills back up and an emotional rollercoaster when they went up yesterday then disappeared again today. Hoping this next week will give us some good news and sending best wishes to everyone going through this horrible illness. I’ve been really inspired by your comments so thank you and keep fighting!
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