Hi I am new to the forum, I am 12 months post chemo I was on the AML 19 trial at Blackpool Victoria hospital. I’m aged 43 and looking for people with similar experiences.
Hi Phil, welcome to our community forum, I have CLL, so I do not have AML, but I hope you find the support you are looking for. However I find this community forum very supportive especially as I find it often does not matter what our diagnosis is but it is the fears, ‘what if’s’, thoughts and feeling that we seem to share. I look forward to hearing more about you, take care.
Hi, welcome to the forum, I don’t have aml but I know enough to realise you have had some very intensive treatment and I am glad to hear you are in remission. I have primary plasma cell leukemia but thankfully my treatment was not intensive but lengthy. How are you feeling at the moment ?
Hi Phil I too am an AML survivor aged 48yrs. Diagnosed May 2018 and also on AML 19 trial. Treatment was at Forth Valley Royal Hospital. I had 4 cycles of chemo too and been in remission since end of 1st cycle. Now continuing with bone marrow aspirations every 3 months. X
Hi Phil. I had APML in May 2018 and am on the AML 19 trial. As the person above I had 4 cycles of chemo and was/ still am in remission from the end of cycle one. I’m 35 and am actually returning to work tomorrow!
Thanks for all your replies. It’s nice to meet people in a similar situation. I found the forum accidentally. I’m a year post treatment now, still get flashbacks and some PTSD interested to know how people cope. I’ve found a couple of footballers who have had blood cancer and use them as inspiration.
That’s incredible that you are going back to work. When did you finish the last round of chemo (I’m presuming the last round was 6 days of high dose cytarabin). Do you feel full of energy again. I
Hello Phil, I am sorry you are experiencing ptsd but not surprised, an aml diagnosis is like a earquake going off in your life. Your told you’ve got a life threatening illness and then you have to intensive chemotherapy with all the complications that brings, so it’s no surprise when the dust settles you still have some processing to do. At least in my case I had a little bit longer to get my head round everything before treatment started. I find going for my reviews stirs up old anxieties and I know many forum members feel the same,
I know all the checks and bone marrow biopsy’s can be hard to deal with. I’ve found exercise again which helps. Also working a few days a week helps. I seem to have managed to get it all under control now. Do you still have to have regular treatment or just check ups.
I finished my six months of chemo three months ago so it’s just 3 month reviews from now on, fortunately its blood tests only to check on my light chains. I’m on full time kidney dialysis three days a week so I can no longer work as I’m very fatigued, but I am enjoying life all things considered and grateful to still be here.
Hello Phil and welcome to the forum.
I was diagnosed with AML in 2015, at the age of 39. I was treated at Lincoln hospital with 2 cycles of induction chemo and 2 cycles of consolidation chemo, so far I have remained in remission.
I’ve found that it is a lot to take in and finding my way in life again once treatment ended was difficult. How are you feeling about it all? Physically and emotionally it has really changed me.
… Yes I too get the flashbacks and PTSD along with periods of bad anxiety. Anything can trigger it and sometimes unexpectedly. Even the other day I caught the smell of something that immediately took me back to being in hospital, then my heart started racing and I felt awful.
I’ve done many things to cope and deal with the whole thing, I finished treatment over 3 years ago now.
I do keep myself busy with being an ambassador and working with the Macmillan living with and beyond cancer team, etc which leaves less time to dwell but it still gets to me and I have dark times. This may not be the best way to deal with it but its got me through.
Personally I found that becoming an expert on AML and my type had really helped me feel in control of it and therefore more accepting of it all. I’ve spent hours researching, speaking to my medical team, CNS, etc as well as requesting all my hospital notes. This isn’t for everyone but I needed to know every piece of the puzzle because I felt very confused in the beginning.
I have built up friendships with people who’ve been through the same and it helps to talk to them (mostly over forum, social media as I live in a rural area)
I too read stories and take them on board as inspiration and the footballers you mention I am aware of and do keep up to date with them.
I did get some counselling although I had to pay private as there was nothing available in my area with the NHS due to our diagnosis and treatment being quite traumatic… she specialised in PTSD and trauma. I know in other areas of the country there is better resources … have you done any investigating on this?
My diagnosis happened overnight and I was rushed into hospital, not going home for weeks, starting chemo straight away so that in itself has taken some dealing with… how did your diagnosis come about?
I have a blog butterflyinremission.com where I have written about my experience, you may find it helpful.
I am happy to help further if you have any questions or concerns
Thanks for taking the time to send such a comprehensive reply.
I have actually seen your profile on twitter which is how I found out about this forum. It seems a great way to meet people in a similar situation.
How did you get involved with Macmillan. I would like to help people too in some way. I have tried groups but it’s trucky to find young people who had had AML, I know one young lady in Florida who I keep in touch with but she had the full BM transplant.
I have managed to try and get back to a new normal a little bit of work and my 3 year old daughter helps so much too.
What kind of AML did you have, mine was FLT16.
I had been fit as a fiddle all my life, never going to the docs, then I went 8 times in 2 weeks with swelling in my stomach. It turned out it had taken a grip without anyone realising and I had huge myeloid sarcoma in my abdomen and was full of ascetic fluid. I was wisked into Blackpool vic in days and chemo started the next day. I was always told I would need a BMT but none of my siblings matched. Luckily I responded so well to chemo I had early remission from round 1.
I finished the last round in Feb last year and came home a year ago.
Anyway thanks for listening and your time.
Dear Anna and Phil, you have both been through so much and reading your stories makes me grateful my treatment was relatively benign. I wish you both continuing good health and thank you for sharing your stories of hope with everyone in the forum.
I finished chemo on 24st August. It was just one dose of idarubicin (spelling?!) As I said I had a subset of AML which is APML which has a different protocol. Had 4 rounds all in a mixture of idarubicin and Mitoxantrone (blue- horrible!). Feel not too bad energy wise - I’ve a few niggly muscle problems - my body has tensed up all over just with stress I think
Hi Phil… you are welcome… pleased to be able to share what I’ve learnt along the way. And yes social media & this forum have been a great help to me… especially as you say AML is quite rare in our age range (I was 39) so it’s always good to ‘meet’ others. There is no one at all in my area who I can meet face to face. I don’t find the Facebook groups helpful as mostly they are from America etc so have totally different treatments & attitudes & even then I just found it ‘tricky’.
I do keep in touch with a few who are from overseas though but they’re the exception.
My work situation is a bit of a long story so I didn’t work for about a couple of years… (they didn’t hold my job open for me🤬) I am working part time now & my daughter is 12… I’ve found it tough physically & mentally but slowly very slowly Improves.
I was the same before diagnosis… never ill, started chemo next day after being rushed into hospital too.
My AML is NPM1… I haven’t had transplant… will only have one if I relapse.
I’ve followed you on Twitter now… too thanks
There are many ways you can get involved & help people either with Bloodwise (who I mainly work with) or Macmillan. I’ve found it has really helped me… giving back & working to help future patients… what sort of thing appeals to you?
Thanks again for sharing that info. So after a year of denial and coming to terms I suddenly felt the need to try and get in touch with similar people. I feel compelled to help others now but don’t know where to start.
Phil, I am sure you will be very supportive on this community forum. There is so much worthy volunteering work around as @AnnaMam says either with charities like Bloodwise or cancer charities or the Citizens Advice or Age UK or perhaps your local hospital, mine has a variety of roles from helping with their hospital radio to guiding patients to where they need to go. Let us know your thoughts and how you get on.
Hi Phil, I am so pleased you found our forum, welcome! If you are interested in getting involved with Bloodwise or sharing your story then please do drop me an email via email@example.com (I work in the support services team) and I can share some ideas and put you in touch with our ambassador & volunteer co-ordinator. Or if fundraising is more your cup of tea, you can look at Bloodwise events here https://bloodwise.org.uk/fundraising - thank you to you & @AnnaMam for sharing your experiences, it will give others hope I’m sure - Dawn
Just checking in to see how you are doing? I know we interact a bit on Twitter but here you can share how you’re feeling.
Are you still thinking about wanting to do something/get involved in some way?