New to forum, Partner has relapsed AML Flt3 ITD- Feeling hopeless

Caring for & supporting a loved one
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Hi there,
I have taken the plunge to write something rather than be an observer. Thank you for this forum it has been useful to read posts, hear others experience and to see the support that is offered.
I hope I have posted in the right place, as I haven’t used Social Media Before!

My Partner of 30 years was diagnosed with AML Flt3 D835 the week we went into lockdown after a routine blood test for Reynauds disease (cold fingers) He had 20% blasts. This hit us like a rock to say the least, especially since I had just lost my dad. My partner was taken into hospital in April for Aza plus venetoclax, as strong chemo was not recommended at the beginning of the pandemic. He got into remission with incomplete blood recovery and had 4 rounds. He was neutropenic the whole time and got C-diff and sepsis in July 2020 and I could not visit him in hospital for the month he was there due to lockdown, which was excruciating.

After 4 rounds of Aza, I gave up my career and we went away to our house in Cornwall we had been renovating for 3 years. The local hospital took bloods weekly, but his counts kept falling and we eventually came back to London to find is AML was back with vengeance (60% blasts) in December 2020 and we were told he would need to come in for strong chemo over Christmas. However on getting his full blood profile back on Christmas Eve, it was seen his AML had mutated to FLT3 ITD so chemo was not likely to work. He was put on gilteritinib a fairly new FLT3 inhibitor.

We got a second opinion from Kings hospital who got him ready for heavy chemo + stem cell transplant, saying there was a 90% chance of a match. However there was no match on the register and we were all devastated. Our 2 children age 18 and 23 then gave samples for a haploidentical transplant, but while waiting the long and short of it was he had rashes, and his eosinophils started rising, he was taken of gilteritinib for a while and then decided to add aza to it. All this time he has been transfusion dependent for hemoglobin and platelets 2 x a week.

However after second and third round of aza he got sepsis. All in all spending 8 weeks in hosptial, coming out for a day 3 times, then rushing back to a&e in the middle of the night with a fever again, having to leave him there and go home alone. I was only allowed one visit for 2 hours a week and the loneliness and desperation was awful. The infections could not be controlled and we tried to get him out on one intravenous antibiotics once a day that I was trained to administered but the infection continued and we only managed 4 days before back in the now all familiar a&e. We eventually got him out 10 days ago and I administer intravenous antibiotics 3 x a day and he continues to have transfusion 2 x a week. He is now off all leukeamia medication as infection control is the priority. He is still severely neutropenic 0.12 and his platelets never go over 20 even after transfusion. Biopsy showed blasts still at 8%, but very little good bone marrow left.

We have managed day trips and a long weekend away in the 10 days he has been home and he is ever remarkable and strong, driving all the way to Cornwall after 9 weeks in hospital!
However it appear that the only hope now is a clinical trial if one is available as any type of chemo would now kill him. Our hope is fading and it feels like we have lived through a nightmare. I feel traumatised by the 9 weeks we were apart and the loneliness of that time.

Sorry this is such a long post, but its been a long time coming and as it has not been a good outcome for us I have been reticent at coming forward, but maybe need some encouragement now from others who have been through similar.
Sending love, hope and courage to everyone on this site. xx

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Hi @Moo and welcome to the forum. Can I start off by saying that you and your family sound just amazing!
I’m so so glad that you decided to post. You have been through so much, during such a challenging time. I don’t know where to start. I’m overwhelmed just reading it so I can only imagine how hard it has been for you and your family. Your emotions must be all over the place.
The first step is sharing how you are feeling and that’s huge. There are so many people on here who will be able to support you and I’m sure somebody with AML will be able to offer more than me in terms of sharing experiences.
What we all share is that fear of the future. But we also have hope as well and keep fighting on.
Remember the support line Blood cancer information and support by phone and email | Blood Cancer UK is there if you need it. I know you may not be ready to talk yet but keep it handy because you never know when you might.
It’s so clear how much you love your husband and that loneliness but have been so hard for you both when he was in hospital.
I hope it has helped getting it all down on paper. I know it does for me because otherwise my mind feels like it is going to explode. Please keep sharing. It doesn’t matter what you write or how long it is, it just matters that you know we are always here to listen.
I’m sending you a huge hug and lots of love X

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Hi @Moo a great big welcome and I am so pleased that you have found the courage to post and so brilliantly, modern technology is so scary.
I think that you have both done so well with the tremendous shock of this whole diagnosis and treatments and also being over the 18 mths of the Covid pandemic.
You also seem to have learnt the medical language so quickly, it was a complete foreign language to me.
I wonder if you have any support from family and friends. You mention your children but I expect you are supporting them. Being a partner of someone diagnosed can be such a difficult role as I believe you have all the same fears, thoughts and feelings, plus all the practicalities of keeping your home running smoothly.
I cannot help you on the medical side, but your partner has gone through so much emotionally, physically and practically it will take him a long time to build back up let alone for his ongoing treatment.
We are here to support you and if you would like to talk someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Please keep posting and take lots of care of yourselves.

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Welcome @Moo i am fairly new to this site too and like you was an observer for a time before commitig to post. You will find it a supportive site with input from other blood cancer patients and from Blood cancer UK reps I am so glad you decided to post. Your partner is going through a hugely difficult experience and the pressure on you must be great, you have both done so well in holding it together. Be especially kind to yourselves as the initial shock of the diagnosis can never be underestimated, one day life is relatively normal and the next you are in a world of hospitals, having to learn the language of Haematology, you have no tumour that you can see on a scan it is your own blood which is letting you down, you feel like you have lost control. and you feel the ricochets with every new blood test or each new diagnosis and treatment regime. I have a different blood cancer but I hope someone with AML is able to respond to you soon . My very best Wishes to you both

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@moo

I too echo to say thank you for sharing your current situation and reaching out. You and your family have been through a lot and I hope by writing what you’ve been through, how you’re doing now lifted some weight off your shoulders and that you’ve been acknowledged and heard …

I can’t say I’ve experienced first hand through my own diagnosis but as a carer for my sister who had a very aggressive cancer and chemo being a ray of hope then not and trying every trial available and hope and faith being a never ending rollercoaster I empathised alot with your words… It brought back so many memories off my 5second warning of grabbing whatever before driving my sister to the hospital and all times of the day, being as positive and supportive as I can ontop of you’re own responsibilities like work and your own wellbeing… but all that isn’t a priority you put everything else on hold and you give all your time and energy as in these times when you lose control and it’s taken out of your hands, that is all you can do…

I hope things find a way for things to get better and know you aren’t alone, there is always someone here at least to be a shoulder, an ear or a high five for you…

Take care

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I can’t believe how much you have been through as a family @Moo . It takes a special kind of strength to face up to so much. You have certainly come to the right place for support and I hope we can support you in the way that you need. The trial option may be along shot but there’s some hope and your family deserves to have it happen for you. Keep us posted and stay strong.

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Hi @Moo, it must be very difficult to write such a personal post but you have done it brilliantly. I hope that sharing your situation may help a little. You know that you are not alone and you have love and support of the forum. It’s so difficult when everyone else is living their lives normally and you are living a nightmare. Please try to look after yourself too as you must be emotionally exhausted. Try not to worry about the future, embrace the present and live each day as best you can. I so hope that there is a medical trial out there to help your husband. Xx

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How have you been keeping @Moo ?

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Hi there @Moo, I just read your post. What an awful time you’ve all been through. My OH of 30+ years was diagnosed with AML in January and like yours had Aza + Venetoclax that didn’t work. After 2nd cycle it was stopped in favour of the more aggressive chemo. I also posted here in a moment of desperation because I just needed to share and get some feedback from people in a similar situation. My husband also had 2 bouts of sepsis and his kidneys were beginning to suffer so he was constantly on drips for antibiotics and fluids to flush him. He was in hospital for 6 weeks. I know a little of what you must be feeling - helplessness, fear, worry, constantly bouncing between hope and despair - to name but a few emotions!
Fortunately my OH managed to shake off the infections eventually and came home 2 weeks ago - so far, so good. He had his bone marrow biopsy last week and the results are due in a couple of days. To say I’m terrified would be an understatement.
Having gone through this experience over the last 6 months I can honestly say unless you’ve lived it you have no idea how it is. I’ve been the support to both friends and a family member who have gone through cancer but going through this when it’s your darling spouse is frightening in the extreme. (I have 3 adult children so I take on the dread for them too).
I absolutely feel your pain and hope that your husband is able to get through the thorny hedge and come out the other side.
I do believe being able to share experiences here is helpful - like you, I’d never used a forum before - but just knowing there’s a community out there who understand and can sympathise - offer advice if necessary - is hugely comforting.
I’m glad you’re managing some days out and some nice times when you can just ‘be’ and not have to think about ‘it’. We’ve had lovely days out this last week, and life has felt almost normal - let’s keep trying to do that.
Sending you a metaphorical hug and a truckload of positive vibes. Xx

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Lovely to hear from you @CathyG and you have shown the value of our forum with your post.
After everything you have been through this year both of you It must have been great to feel life was nearly normal when you went out last week, where did you go and what did you do?

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@Moo - I am in my fifth year post double cord blood transplant after AML FLT3 70% blasts. Like your husband, they couldn’t find a match for me, so the cord blood was my only option. Every patient is different, everyone suffers and heals in different ways, but we all have one thing in common - HOPE. It is such a horrible and unfair thing you are going through, but I hope through commenting on this that it gives you some hope that things can turn out okay. You have to keep kicking at the dark to let the light in. Sending you lots of positivity x

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A great big welcome to our forum @samsym and I love that saying ‘You have to keep kicking at the dark to let the light in’. That is one I shall definitely remember.
I always think that I have to go through the bad times to appreciate the good times.
Yes, there are so many different types of transplant aren’t there and we are all unique and very special special people on this, very supportive, forum.
I really look forward to hearing more about you.

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Hi Erica, we live in North Wales so no shortage of beautiful places to go out for a walk, picnic etc. I do a check-in here every so often because it is helpful knowing we’re not the only ones with this struggle. We are hoping to get biopsy results today so very on edge as consultant told my OH that if this doesn’t work “there’s nothing else” and yet I hear of so many people who have stem cell transplants. If needs be I’ll bring that up. My OH is very well at the moment. His AML was caught in the early stages and so far he hasn’t had any worse than 23% blasts (it had increased 3% after the Aza/Veneta hence getting him on this new regime) so even six months on he has so far shown no symptoms beyond being more tired - but we know it’s there. I too like the expression ‘kicking at the dark to let the light in’, it’s just very hard sometimes. C.

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Hi @CathyG I think the 'kicking at the dark to let the light in’ especially at the moment with the Olympics and Thai Kwando and I visualise that sort of kick, if only I had the energy and I would probably do myself a mischief anyway!!!

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Thank you for your reply and sorry to hear you are going through such a tough time too. I am glad that your days out were good and you got that sense of some kind of normality in such difficult times.
I’m going to update where Nichola asked for an update as I am not sure where to update, or reply to everyone.
Sending so much love to everyone. xx

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Thank you everyone for all your replies. I was so touched when I came back on the forum and saw all your comments, they really do bring strength in knowing others are experiencing similar, however sad that may be at the same time. Samsym so glad you are five years post transplant.

I don’t have family near, although I speak to them every day and while friends do ring every now and then, I definitely lack face to face friends contact, although a couple of my neighbours have been amazing and I am so so thankful to them. They helped me clean the house when my partner was coming home, took the dog to vet and made food. All this kindness makes so much difference.
Trying to keep hopeful and thankfully my partner is still at home. I gave him the intravenous antibiotics for 3 weeks and they were stopped 3 days ago and so far so good so we are thankful for that. Unfortunately we continue to have a hard time, as his potassium fell to dangerous levels so we found ourselves back in the Macmillan hospital 4 days last week, one day for 9 hours, and again 4 days this week as on top of his transfusions his picc line got infected so has been removed. They are putting one in his chest, which does not have any external lumen, but have forgotten the name.

On top of that his monocytes and lymphocytes are increasing each blood test (Not surprising as he was taken off all medication) and he has not been feeling well at all. He’s having 6 hours of transfusions today and has just rang me to tell me that the FLT3 is back, blasts up to 18% ,so we are restarting gilteritinib today and there are talks of another round of aza, even though we were told any more chemo would kill him! Kings are seeing us next week to reassess for heavy chemo, they need to assess his health and may need to keep him in for these assessments if we decide to go down that route, but my partner is physically unrecognizable to how he was 16 months ago. They did say that the chemo leading to BMT had a high chance of killing him too. We have also been asked to consider a couple of clinical trials UCLH are running, so we need to look into them too. It seems there are some options, but as everyone knows with this disease there is no magic bullet, but trying to kick at the dark to let in light! What else if there to do than to try to appreciate each moment and keep the fearful future at bay. Easier said than done, but my anxiety has definitely decreased since he is back home.
Sending so much love to everyone, and thank you all for your encouragement and support and for your journeys too. Keep in touch xx

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Hi @samsym and a big welcome to the forum. So great that you can share your experience. How are things at the moment?

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Gosh - you have so much going on. However, it sound like you are doing an amazing job. I hope you are looking after yourself as well?

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Hi @Moo you certainly have both been on a continual rollercoaster of medical appointments, some meaning your husband is spending a whole day or days in hospital.
For me this would be emotionally, medically, physically and practically absolutely exhausting and there is your husband feeling so rough.
You must also be equally completely exhausted.
During Covid times I have really realised how much I miss family and friends and that social interaction and contact.
We are here to support you both and perhaps this is the one place you can say how it really is for you and also the support line details are above.
Please try and look after yourselves and spoil yourselves.

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Very best wishes @Moo you are going through such a difficult time. @Erica has put it in a nutshell perhaps this is the one place you can say it as it really is. I know myself supporting a partner through a different type of cancer you often have to be so very careful what you say to other family members and friends it is a comfort sometimes to be able to say what you are really thinking

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