Hi @PAW68 welcome and thanks for posting about you and your husband.
I am glad that you have been reading posts on here and seeing the similarities and I hope feeling less alone.
Yes, it sure can be a bumpy ride medically, emotionally, psychotically and practically.
I often think think that spouses are the unsung heroes keeping everything going and without the credit, but also powerless to make things better.
I think you are right that nobody can know what you are going through.
Don’t forget the Blood Cancer UK support line is there for both of you on 0808 2080 888.
Please do keep posting you are part of our forum family now.
Look after and be ever so kind to yourselves
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Hi @PAW68
I am sorry you’re going through this too. My husband had FlT3 as did a few of our friends that we’ve met along the journey. Gilteritinib worked very well for one after a few months of persistence to allow her to go to transplant. She’s doing great and over a year out from transplant. Of note, she is taking a preventative chemo drug for 2 years post transplant to further lower the risk.
I’m not sure how helpful this is but just want to send some positivity. Do speak to your medical team & keep posting. I have a big thread on my experiences supporting my husband. Being able to come on here and get some care / kind words or different perspectives was really grounding and helpful for me.
Take care of yourself- it is very hard to support someone on this journey so be kind to yourself.
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Hi Paula - thanks so much for your post. I’m so sorry to hear about your husband’s diagnosis. I know what a shock it is. I still Find myself reeling.
My son has been on Gilteritinib since end December (that was a tough new year) and he then started on Venetoclax with it. As he was under 18 it wasn’t available on nhs to him but the consultant asked the drug company to give compassionately, which they did! The two drugs worked well together and he is now in remission through all measures except for the deepest molecular where he is 0.034%. This means they are happy to go to transplant. So it has taken 5 months to get here.
Don’t lose hope. I couldn’t believe that these drugs would have this effect (midostaurin did not work). Our consultant said that many adults are on it for at least a year before getting ready for transplant. The great thing is you can be at home. That has made a huge difference rather than the chemo (which didn’t work anyway).
In one week we go to the Marsden to start the conditioning for transplant, it’s scary but also exciting. Hopefully the beginning of a new start.
I wish you a your husband the absolute best. I think the Gilteritinib is a successful drug and it gave us hope when all else failed. X
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Great to hear from you again @CatherineofHove it sounds a tough time for you all for at least 6mths, if not before.
How are you doing?
Please do look after yourself as well as you look after your son and please do keep posting
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Hi Catherine, thank you so much for your lovely positive comments. I’m so pleased that your son is doing well and that he’s getting ready for his transplant. We are hoping and praying that my husband will also get to that stage. I have the book from blood cancer. org ready to read, but I daren’t tempt fate so have put it to one side for now.
Thank you also to @erica and @toadmum for their kind thoughts.
Erica is always so kind and caring when she replies to the posts on this forum and I have read the whole of toadmums thread, which was so helpful.
Thank you all so very much for responding to my post and I hope that your son’s transplant goes well.
It would seem strange to some people that you’re feeling excited about what is a new stressful situation, but I can totally relate with you, and fingers crossed that my husband will reach that stage too.
All the very best wishes to you all
Paula x
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So latest update on my husband- unfortunately Gilteritinib has not worked for him. He was on the highest dose but we had to come in via A&E a few days ago as he was feeling extremely unwell and had very dark almost black stools. He has had 3 stomach ulcers stapled and is not allowed eat or drink now until tomorrow to allow for healing.
Whilst he was waiting to see where the internal bleeding was, we were told that the Gilteritinib had not worked. Obviously we were both devastated by more bad news, I can’t remember when we last heard anything positive to be honest.
So there was then full steam ahead to sort his ulcers out- needed 4 bags of platelets before they were able to go ahead with his procedure.
Anyway he will now be starting on Flag-Ida in a few days time on what will be our 35th wedding anniversary- we were due to be on a lovely cruise 
We’ve been told to expect a stay of about 6 weeks and will most certainly get an infection.
He’s been neutropenic since he started his first chemotherapy treatment way back in January. Fingers and toes are crossed that this treatment will be the one that will work
@CatherineofHove I do hope that everything is going well for your son and @Toadmum I was pleased to see your positive results for your husband’s one year anniversary of his BM transplant
Xx
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Oh @PAW68 your husband certainly is going through it.
However it sounds as if his team are keeping you both informed.
How are you coping?
Look after yourselves and keep us informed.
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Hi Erica he certainly has already gone through a lot, but he’s strong. Yesterday we were both struggling with the latest setback, we usually take it in turns and support each other when one is down the other one is feeling more positive. But today is a better day and he’s in reasonably good spirits, most likely due to having less pain from his ulcers.
mind you he’s now getting a little bit tetchy due to not being able to eat- he’s even looking at the hospital menu with a renewed interest!
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Hi @PAW68 - I am so sorry to hear both about the pain of the ulcers that your husband has had to go through but also the difficult news about the Gilteritinib. I will be thinking of you both and hoping for the flag Ida to be a success. My understanding is that it is very successful usually- with paediatrics it is their first choice - I expect with adults they sometimes choose less invasive methods, there are far more targeted therapies available for adults.
Frankie had it and whilst it was tough he found it manageable. You just must always think that there is something else, a new path and you will get there.
My son’s transplant is delayed by a week as his newly fitted central line wasn’t working and he had an infection too. So the line was removed and another one put in this week. So he starts his conditioning chemo on Tuesday. We are being allowed home from hospital tomorrow for the day for Father’s Day so we are excited about that.
Keep your spirits up and keep posting. Xxx
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Sorry to hear about the infection, but being able to go home for Fathers Day is such good timing!
Enjoy your day and wishing Frankie good luck for next week.
And thank you for your kind wishes and positivity, just what we need right now. I’ll share them with my husband when I go to see him later on.
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Enjoy your time at home 
. That will set him and you up for the next stage.
Do keep us posted and sending love and positive thoughts xx
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Thanks for the update. Try to keep strong and we look forward to hearing if the hospital menu offers any tempting treats…
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You guys have been navigating so much, but you are still standing. During our toughest moments last year I used to like to remind myself that ‘we can do hard things’, I might not like it but time moves whether or not we want it to, so hang in there.
Sending you lots of positive and healing vibes. Have you been able to get a moment or two for yourself amidst everything? We cannot pour from an empty cup (and all that jazz…) xxx
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Latest update on my husband, they have allowed him home to allow his ulcers to heal. Usually takes around 4 weeks but due to the time constraints of this awful disease are allowing only 2 weeks- starting the Flag-Ida with bleeding ulcers is not recommended.
Obviously the delay in treatment has caused some anxiety but the consultant said that the leukaemia level has been on the lower level since he was first admitted and has stayed at that level for quite some while. Despite his platelets and HB levels dropping extremely quickly when he was taking the 200mg of Gilteritinib, which was stopped - his bone marrow is now making his own cells and his levels are holding their own.
He will be closely monitored and will continue with transfusions of platelets as they need to keep above 30 to stop the internal bleeding.
Despite being told that it had not worked, the Gilteritinib has done something after all?
Knowing that he’s going to be closely monitored during the healing period is a comfort as is the knowledge that his Acute myeloid leukaemia (AML) has not yet reached a level where time is of the essence.
How strange that we are comforted by this knowledge even though he’s still got a terrible disease, like you have all said we take the positives when they come along however small.
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Hi @CatherineofHove how is your son getting on. I hope he has had his Stem cell transplant and is doing well? I think about you often, it must be so hard to see your child having to endure such a difficult illness.
After a further stressful delay due to an infection and waiting for a bed to be available my husband was at last able to get on with his Flag-Ida and is now on day 7 . So far he’s doing fine and still managing to keep fit by walking up and down the ward. He’s averaging around 8,000 steps per day.
This is third time lucky for getting him to remission. One of his nurses has told him that his plan is to go back on the Gilteritinib following the Flag-Ida. When I questioned why they didn’t try the Flag-Ida before the less intense Gilteritinib the CNS had told me that if he’d had the Flad-Ida firsthand then he would not be able to have Gilteritinib as the NHS wouldn’t fund it in that order?
My husband is very fit and strong and able to handle the strong chemotherapy, his consultant said that it would be like “hitting him over the head with a saucepan!” So we’re both pretty relieved that he’s tolerated it pretty well so far.
I suppose it is now a matter of time before he gets an infection and then he will no doubt feel really ropey 
On the bright side he’s in an air conditioned ward that’s such a relief during this incredibly hot weather 
I have been rereading some of the older stories on here especially @SarahMum and @Toadmum and the support and positivity is so good to read. I find myself searching out positive stories so that I can use them to contain both mine and my husband’s anxieties. I particularly love the table poem by @Willow (on Sarah and Danae’s story) - it’s so very true and such a good way of describing how Acute myeloid leukaemia (AML) has impacted our lives.
I do hope that everyone else is getting on well and staying hydrated and healthy xx
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We are doing well here & have been on holiday for the last week or so in the UK! It sounds like there is a good plan for your husbands treatment. I really feel for you both right now.
In the thick of treatment, it felt to me like there would never be a ‘normal’ time but I try to post still periodically on my post to show that it does happen. @SarahMum posts were so helpful to us at the time too!
The NHS funding is so frustrating to me - I get that this is how it has to work but it’s hard when there are people and lives impacted.
Importantly, how are you doing?
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Lovely to hear that you’re all doing well and have been enjoying a holiday. Such a positive outcome for you all and so nice for those of us who are still in the thick of things.
I’m doing ok, very mixed emotions. A feeling of relief that it’s no longer myself who is monitoring him on a daily basis - he was on ambulatory care and I was logging his temperature and blood pressure etc on an app as well as going into hospital every other day for blood tests. My manic cleaning routine is now on hold, much to my relief! I also felt very sad when he went back into hospital, but I do now get more time to myself than when he’s at home. Even saying that has just made me feel very guilty and selfish! Every emotion is going on.
I’m very lucky that I work for the NHS and have been able to take time off from work since his diagnosis in January. My job involves working with families and young children and babies so was basically a complete no no for me to work. Unfortunately I am now having to isolate myself from our small grandchildren just to be on the safe side. But hopefully will not be too long before his neutrophils start to recover. Xx
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Heya @PAW68
Sounds like you really are in the thick of it at the moment. Do look after yourself in all of this. Each hour as it comes…
We are good. My daughter has gone back to her Uni accommodation and is enjoying just chilling. It is her graduation next week. I am very excited to attend the ceremony but know I will be an emotional wreck!
Thanks for the reminder about @Willow ‘s special poem that she kindly shared. The fear and emotions are never that far away (even now) But we all have to recognise the good/special moments when they are with us.
Glad you have some respite from the clean routine. Hope those neutrophils make an appearance soon.
Sending love and positive thoughts
Sarah xx
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Thank you Sarah, please post a picture of your daughter’s graduation. I certainly shed tears watching both of my daughters graduate and my goodness how proud you will be of your lovely daughter who has been through so much.
Enjoy your special day xx
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It sounds like you’re doing a great job! Your message takes me back - to the cleaning, neutrophil monitoring & all the chaos that comes with it. I found infection and temp monitoring particularly hard at times - constantly on edge.
Mixed emotions is such a good way of putting it. I totally understand how you must be feeling. Hang in there though ~ really hoping you’ll be able to look back in a few months time / Christmas and feel like it was a distant memory!
Have you got ways to keep in touch with your grandchildren? How many do you have & how old ?
Take care of yourself!
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