Brett G
Posted by

AML, 6 months on

Brett G
Posted by
17 Nov 2014

Diagnosis – April to May 2014
I was 40, enjoying married life with three young children aged 5, 9, and 10, looking at moving house, had worked around the world, achieved lots, and was looking forward to doing a lot more in life.

Then whilst on holiday I had a raging fever, and felt exhausted. I got checked for malaria, and got my UK GP to refer me to the local medical triage unit. After spending a day there every week for three weeks they decided I had had Dengue Fever.

I may well have had that at some point hence some antibodies showing, but I still felt ill, and was getting a lot of UTIs. My bloods were also not recovering as they should. I went through three GPs at my local surgery, with the suggestion from them being that I had always been a bit neutropenic. I became a bit more expert and realised ongoing neutrophil levels of 0.5 were not great news. I saw a tropical disease specialist who commented that maybe I should see a haematologist – thanks to him I asked the final GP I saw whether we should consider this.

Getting referred was slow, and by now I was feeling tired; something in my voice must have convinced the appointment booker I spoke to to give me an early appointment, and I was seen a few days later, on May 7 2014. The haematologist took bloods, and that evening I was told it was likely I had acute myeloid leukaemia. A bone marrow biopsy followed the next day, and AML was confirmed.

AML is hard to diagnose, and so I do not blame any of the professionals I dealt with. However, the message here is if you feel ill then don’t be afraid to keep pushing and asking. Most cases will not turn out to be this, but if I had not been persistent I would probably have ended up in an ambulance.

What now?!
The diagnosis was scary, but at least now the system that we have in the UK started to work. I decided early on to be part of every trial that I could, so that at least some good would come out of this horrible situation. We saw a specialist nurse and consultant, of course not much made sense on the first day, and we focussed on the initial priority, which was how to tell our children. My wife and I dropped in to a Macmillan lodge and were greatly helped in finding out how to do this. Telling the kids was the hardest thing I have had to do, but they took it in their stride and we found that being open with the early on was the best thing for us to do.

Treatment then started four days later on the Monday. I was really mentally ready for this, and was disappointed to have to wait until the second day for my first chemo. My first cycle lasted 10 days, with a total of a month spent in hospital. I got two infections and learnt how to recognise when these were coming on, often before they were clinically diagnosed. I had about 10 units of blood and 4 of platelets. I got some sores on my body but thankfully did not get mouth ulcers (odd, I normally have them all the time). Over time my bloods started recovering, and good news came; a bone marrow biopsy confirmed that I had got remission on the first round of chemo.  Cytogenetics on the earlier samples showed me as having AML16, and my treatment was tailored to this.

I learnt that customised treatments are one of the major steps in treatment in the last few years and are leading to better outcomes. It is still tough, but more hopeful than it was.

At the end of cycle 1 I left my room on the ward. I was weak, I had lost my hair, but even seeing the wild flowers growing outside the corridor window was a joy.

Cycle 2 led to me having a medicine that specifically attacks the leukaemia affected cells. This was part of the trial, and I felt terrible that night, but got through it and hopefully it has done its best. I got a further infection (why do these always come at night?), had more blood transfusions, and was pronounced ready to go home for 10 days rest. Before I went a team came in and discussed the number of cycles of chemo I should have. This used to be 5, is sometimes 4, and as part of the trial could be 3. The idea is to reduce the number of courses to the minimum to reduce long term impact. This was a tough one, and not something the doctors or I could make a clear decision on – more information is needed. I decided with the doctors to go for the randomised trial on this so at least some good could come from the decision.

Randomisation came up with 3 courses for me. I immediately felt worried; what if 3 is not enough?! I discussed this with the specialist nurses and doctors, apparently someone else had been given 4 in the randomisation and was also worried. At the end of the day we do not know, we have benefitted from previous trials, and we owe it to those who come after us to carry on through with this. It is a tough one but I elected to stick with the trial.

Cycle 3 passed quickly, and I avoided infections, probably helped by spending most of my recovery time at home this time. My neutrophils again went down to 0.0, haemoglobin went down to 10, lots of blood followed, including on my birthday, and I was still weak.

So I’ve finished right?
In mid August I finished treatment, relatively quick! At the end of August we went on holiday in Cornwall. I was exhausted, but felt we should do it for the kids as we do not know what the future holds. We also had a wonderful party for family and friends basically to celebrate having got though this, thanks mum and dad and everyone who came to it.

A check up followed, and confirmed that haematologically I was normal, but the consultant warned me that recovery would take a while.

I was quite concerned about my ongoing fatigue and the fact that my short term memory was shot. In addition I felt ‘flat’ and did not have any elation at finishing treatment. I saw someone at Macmillan again, who reassured me that this was very typical and that I was doing all the right things. Just being told this was great!

I have taken up pilates and walk a mile or two regularly to try and get my body working again, and am staying active. I am in a Macmillan moving on group, which is giving some great ideas and perspectives, helping pick up where the treatment cycle has finished. One of the features of AML is due to the isolation that you do not meet many other patients; sitting down with others who have been through similar is I find really helpful. The group has also proved useful in telling one not to do too much – I have always felt guilty if I sit down!

The biggest moment for me came last week, when I had my first hair cut, of my new thick and wavy hair (chemo can have a positive!). In doing this I felt I changed from a patient to being in the normal world.

I am still really fatigued and my immunity is poor, but am off to our office for the first time since May in two days time, so I can achieve another milestone. Recovery is definitely going to take a lot longer, plus there is always that nagging doubt of ‘is this thing really beaten?’, but I am resolved to get on with life. We have already booked our holiday for August next year, and the fatigue does mean I can spend more time with the family (be positive!).

I am thankful for the dedication of all the NHS team who treated me – they are superb. The NHS gets a lot of knocks, but once diagnosed with something like this it is there for you. My family, and in particular my wife, have been great, in something that was probably as tough for them as it was for me. Well done everyone!

What would I tell others?
In summary for any other patient I would say:

  • Each case is different. Listen to and ask your doctors about anything you have a concern on
  • Take things day by day and week by week
  • Stay off Google or use it with great care; much of the information around for example survival rates is badly out of date. The pace of progress on outcomes is fantastic, though we are not yet there. If you need a clear answer ask your Consultant, mine was very helpful yet realistic
  • I was worried about how my family would do. They have handled it great, and I am sure whatever happens in the future will be fine. This has left me free to focus on getting me better
  • The end of treatment is not the end of the story; it takes time to recover. Get those around you at home and work to give you time to get better, and be realistic in goals you set for yourself. Use local support resources if you think they might help.

Comments

Anonymous
17.11.2014

Being one of those who has been close to you over the 6 months, I have seen how your natural strength, determination and positive attitude have helped you and those around you. It's been quite a journey and you have travelled it well.

Anonymous
17.11.2014

Brett, you and Bushra have come such a long way since we met that first day on Ricky Grant. You have been inspirational with your strength and positivity, at a time when you could have both crumbled. We know how it feels to be coming through treatment, yet never quite believing you're fully recovered. Friends and family are fantastic in being supportive, but its important for them to remember that constantly quantifying how you're 'feeling' can be exhausting. Being treated like a 'normal' person is paramount to coping with the reality that there are no guarantees. Thank you for sharing your story, I am sure you will have many many more milestones to report. All our best, Siobhan and Jason.

18.11.2014

Siobhan, you and Jason gave us both perspective and strength in our most difficult moments, thank you. It is not something any of us choose, but there is light on the other side; life does get better, and together we can all try to pull through.

19.11.2014

Andy,

Many thanks, and please do go ahead and share the blog on facebook - I hope that this helps others as much as reading other people's stories helped me.

Will certainly follow up with a blog about moving on - watch this space!

Best wishes,
Brett

19.11.2014

Brett,

I wanted to echo a lot of what's already been said. This is an absolutely fantastic blog with some absolutely fantastic advice for AML patients and beyond. You make some really outstanding points - particularly around diagnosis and the need to keep pushing if you feel that you're unwell and you don't feel that your needs are being met.

It's reallly encouraging to hear that you received support from Macmillan throughout this journey. Especially in the form of the moving on group for as you say right at the end, end of treatment is not the end of the story and in many ways is just the start. Having a place to voice your concerns and how you're feeling with others is invaluable and sounds like it has given you a great deal of reassurance to know that you're not alone. This sort of service is not something that was available to me when I first started my road to recovery and would have been really beneficial. I'm glad this is now available to patients but it's not always as well sign-posted as it should be and many patients do not take advantage of it. With that in mind, would you be interested in writing a blog about it and how it's been of benefit to you for us? As I say, I think it would be invaluable.

Really glad to that your specialist medical team were able to take the time to talk through all the various options with you. It must have been an extremely difficult decision to make whether to stay on the trial or not but it sounds like it's worked out well so far - long may that continue to be the case!

Your positive outlook is fantastic and it sounds like you're well equipped for the road to recovery and all the challenges that still lie ahead. All the best and thanks so much for sharing your story with us - would you be happy for us to feature your blog on Facebook? As I say, I think it will be enormously beneficial for other blood cancer patients to read.

19.11.2014

Wow Brett, thank you so much for taking the time out and share your diagnosis with others on this blog. You make some great points that I heard when speaking to others in similar situations. Its inspiring that you had the ability to be persistent in getting answers from your GP - something that I think resonates with a lot of patients. 

I also love your tips on what you would tell others.. I am sure many would appreciate reading this. 

Well done on finishing treatment. Where have you booked your holiday to? Please keep us up to date on your progress and your holiday! 

Lauren 

Anonymous
19.11.2014

Amazing to read your story Brett, my son is the same age as you also with 3 young children, he was diagnosed with AML in October 2013 and is also now in remission, it fills me with such positivity to read stories like yours, thank you for sharing it and I wish you a continued recovery. Lynn

19.11.2014

Thank you so much Brett - I think this will be extremely valuable to blood cancer patients and I'm really glad that you've benefited from reading blogs by others.

We just posted your story on Facebook (which I'm sure you've already noticed) and the response has been enormous already. Don't feel obliged to reply to any of the comments unless you want to but I thought you might want to have a look to see how much of a difference your blog has made to others.

Have a great evening and all the best in your recovery!

Andy

Anonymous
19.11.2014

Enjoy every minute of every day. Yesterday I was 21 years post BMT for PML. I had two boys aged 2 1/2 and 6 years old and a wonderful husband to get better for. They are all grown up now and I'm now going to be a granny in March 2015. It takes time to get back to full strength but you'll get there. All the best in your recovery. Diane xx

Anonymous
19.11.2014

Lovely to read your blog and wishing you all the best for a full recovery!

Anonymous
19.11.2014

Brett my fiance was diagnosed with AML in may 2012 with a daughter of 1 at the time devastation hit us. Reading ur blog was like going back everything u say is matched to how Mark felt. After 5rounds of chemo he relapsed in a month then after further chemo he had a bone marrow luckily a match from his brother, with the amazing staff, family Macmillian and friends it keeps us strong as u said its a long road, a tiring one most days and recovery takes time. Ur blog was great to read, inspiring good luck in keeping well, ur family too it is hard for the ones around you, and to everyone fighting this disease x

Anonymous
19.11.2014

I had aml m0 in 2006 I had 4 cycles the 3rd was the worst . I was on aml 15 trial. Reading your story brings so much back to me.all those infections and bloods . Like you I could not fault the nhs treatment. It was done at Stafford hospital and my consultant Dr Revill also had aml and was treated there 2years previous. The feeling of being tired still stays with me . I work full time tho.and also chatting to others through face book and leukaemia care.has helped as we all feel the same when discharged . We all feel slightly worried but 8 yrs on I also feel so lucky. Keep being positive it helps

Anonymous
19.11.2014

I am pleased to read your venture into AML as I also have AML I had been very tired fatigue no energy I could not do anything went to my family physician several times he told me I had atrio fibberlation, I was depressed the moral is he did not care of how I felt finally December 26,2013 I went to ER told them how I felt naturally they thought it was my heart has I have 3 stents had a massive heart attack 5 years ago they did blood work then the ER doctor came in and told me I was anemic that is why I felt so sick but 10 minutes later he came back and asked if I knew I had leukemia wow my husband and I looked at one another said no just that I was not well the doctor called in a specialist they decided to send me to the cancer hospital by ambulance right away we called our daughters immediately they were in shock and so was I. December 27th I met with 6 different doctors they all told me the same I had to start chemo or I would die within 3 to 6 months wow what a thing to tell me machines started coming in my room a practitioner nurse will now start a bone marrow biopsy and wow does that hurt, another doctor came in informed my family and me if in the event I did not take the chemo immediately I would be moved to pallatif care and would have a very terrible death so my family said mom you must start chemo no warning no nothing I am so weak I am still getting blood transfusion still sick an I have to make such a decision, December 28th they send me for heart xray or whatever in and out of different xray machines now I must sign my life away to start chemo December 29th here we go they told me it was going to be intensive chemo 22 hours per day for the next 10 days, my hair fell the nurse shaved my head that was a sad day for me I got the diarrhea something terrible was going 30-40 times perday carrying my iv machine with me what a mess what an ordeal when I was so weak so sick I felt like I was going to die and wanted to die, where is my dignity having accidents in bed on the floor nurses said it is ok but it was not for me, I must go now will be back later or tomorrow

Anonymous
19.11.2014

Hi Brett,

A wonderful and uplifting story. So happy for you and your loved ones. Great advice too.

Sadly my hubby died 6 months after diagnosis from AML. His disease did not want to respond to the treatment despite even having a stem cell transplant. He also had Mast Cell Leukaemia- not good news for anyone.

He was 33 and has left behind a now 3 year old boy. Cannot fault the NHS either in their handling of his treatment. Tailoring where possible, seeking funding and genetic testing too.

Your case shows how fast paced these changes are and how new treatments are available all of the time. Giving hope to all.

Wishing you continued good health and happiness.

Anonymous
20.11.2014

There was a lot of what I read here that felt really heartening for me to read. As an Aussie diagnosed with AML in July, I too have just finished treatment and I enjoyed reading this, feeling a familiarity/kinship in some of my own reflections that mirror yours - AML making you feel isolated, not 'meeting' others, not feeling elation at the conclusion of treatment. I wish you the best of luck as you move forward in your post-treatment journey!

Anonymous
20.11.2014

that is very great thanks for your Brave and hard try. I had also same AML . i had BMT for sure treatment . i passed 8 times chemottaphy . even my Blood Group changed from A- to A+ ! and now adays i feel better i start my usual life going work and practice .

Anonymous
22.11.2014

Hi Brett. My name is Derek, I'm 46 and I live in South Lanarkshire in Scotland with my wife Chris and 2 spaniels. I was diagnosed with AML in March 2013, and fortunately, like you, achieved remission. When I read your blog I couldn't believe the similarities with my own battle ! You are the first person I've heard refer to the short term memory problems which I've also encountered. Like you I also returned to work 6 months and 3 weeks after diagnosis, and despite the ongoing bone marrow aspirates and venesection to lower my iron levels (which are high due to the 40 blood transfusions I got last year), I've not had a single day off sick since. Here is a link to my blogs which I started shortly after diagnosis ;
https://leukaemialymphomaresearch.org.uk/people/derek
I am delighted you are doing so well and feel a sense of connection with you due to our similar, almost identical, journeys. Kind regards. Derek

Anonymous
23.11.2014

Congratulations on your success. I too am a father of 3 and one on the way and was diagnosed on 9/11/14 standard risk. I am +3 days after my transplant and have the mental attitude for success. I'm at Dana Farber in Boston Massachusetts, USA and expect to be here recovering for another 2-3 weeks. God Bless

John

Anonymous
24.11.2014

Well done John, it is not easy, but you have already come a long way, and sound set to beat this if possible. Thinking of you, and if I can be of any other help do let me know. Best, Brett

24.11.2014

Thanks Shelley. We all hope that one day these horrible diseases can be beaten, and that after effects are reduced. Hearing your story has reminded me how lucky those of us who get through are, and of what really matters. Thinking of you and your son. Best wishes, Brett

24.11.2014

Thanks Derek, it is great to hear a positive story, we all need something to lift us up at times, well done. I found that doing some work has actually helped me start to kick off 'chemo brain', it is a difficult balance between not pushing too hard and achieving progress.

I was also pleased to read on your blog that travel insurance is quite doable after even a relatively short time. We are holidaying in the UK for next year but it is nice to have the option!

Best wishes, Brett