Martha
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Being diagnosed with blood cancer while pregnant: my experience

Martha
Posted by
29 Jul 2016

It all started with a phone call at the end of April this year. I was delighted to be nine weeks pregnant; a few weeks earlier I’d had an early scan which showed a healthy, well developing foetus with a clear heartbeat. The scan photo sat on the chest of drawers opposite my bed so I saw it every day when I woke up.

I’d had some bloods taken as part of the routine first trimester checkup with the midwife. I had a chat with the nurse taking the bloods, and explained I was used to needles because I’d had leukaemia before. What type, she asked; AML I said. ‘That’s not a good one to have’ she said, it seemed she had some experience with the disease. ‘No, but I’ve been very lucky’, I replied.

Relapse

Two days later, instead of a call from the midwife saying I was a bit anaemic or telling me to take vitamins, I got a call from my haematology specialist nurse telling me my counts had dropped. I needed to come in straightaway for another blood test and possibly a bone marrow aspiration. Another day later my consultant told me the leukaemia was back and there was no chance my baby could survive.

I had AML for the first time in 2012 aged 35. After successfully going into remission following three rounds of chemo, life gradually went back to normal. I went back to work, moved in with my partner and got married. I waited for two years before having fertility tests. Luckily the chemo hadn’t made me infertile, because during treatment I had received monthly injections of Zoladex to protect my ovaries and stop them from releasing eggs. My consultant said my risk of relapse was now small enough for it to be safe to try to conceive. And almost exactly three years after my last discharge from hospital, I found out I was pregnant.

Implications of further treatment

The implications of my relapse while pregnant were quite clear from the beginning. Chemotherapy can do great damage to the unborn child, which is after all why women undergo a pregnancy test before starting treatment. While there are some stories I’ve read about women who are much further on in pregnancy having been able to delay treatment until their babies were born, with AML this is unlikely as it needs to be treated urgently.

As I was still in my first trimester, I simply had too far to go to be able to maintain a pregnancy during treatment. It was too dangerous to put my body through a pregnancy and chemotherapy at the same time, and it would be impossible for the baby to survive my stem cell transplant.  My consultant immediately called an obstetrics consultant to come and speak to me and she explained that the chances of keeping both me and the baby alive were very small. A termination was the only safe option at this point, and we were unexpectedly faced with the decision to end this much wanted pregnancy.

The aftermath

The first few weeks afterwards were hellish as my husband and I tried to come to terms with our loss at the same time as facing going through cancer treatment all over again. We struggle to understand why it happened this way. Did stem cells play a role in early pregnancy that could have triggered the relapse? Unfortunately it isn’t possible to know, and my consultant isn’t sure. Relapses after three years are rare. It may just have been random, cruel, terrible bad luck and timing.

All I wanted was a straightforward time in treatment, but a drug reaction put me into ICU for a number of days. Once that was resolved, however, I responded well to two cycles of FLAG chemotherapy and I am now in remission, awaiting being admitted for my transplant in about three weeks.

Dealing with the loss of the baby is an ongoing process and it’s not something I think you can ever get over. It seems incredibly unfair that instead of shopping for baby clothes I have spent the last three months mostly in hospital, and I still have such a big part of treatment to come. Quite a few close friends are pregnant, due around the same time I was, and this is very difficult to deal with.

I do have friends who have experienced miscarriage and it’s been helpful to talk about it with them; however, many people don’t know what to say and avoid the subject. Counselling has helped, but a lot of the time the grief is something I’ve had to put aside to focus on getting through chemo, infections and long stints in hospital. It can be too much to deal with all at once. The hospital arranged a burial and once I have finished all my treatment, visiting the baby’s grave might be a way to start to process what’s happened.

The future

Luckily in this period while I await the transplant, which will most likely make me infertile, I have been referred for fertility treatment and if this works we will have frozen embryos for the future. I hadn’t thought this would be possible and it’s by no means clear if I will be able to contemplate a pregnancy in 3 years’ time, but there is hope.

One of the hardest things was losing the future that we had looked forward to and planned, facing the loss of fertility as well as the loss of the child we were expecting. Perhaps we can still have that future with children of our own, but with everything we’ve been through it can sometimes be hard to believe in it.

I wanted to write this blog because this situation is so rare that I couldn’t find any support for it online. If you are in this situation and would like to know more or to chat to someone who has been through it, feel free to contact me via Bloodwise. The wonderful charity Petals provides specialist counselling for pregnancy loss: http://petalscharity.org/

Comments

29.07.2016

To be able to write so openly and honestly about everything that you’ve been through and are still trying to process is nothing short of extraordinary and requires so much courage.

I cannot begin to imagine what you’re going through at the moment but want you to know that we’re here to help in any way that we can especially with the transplant which it’s completely understandable that you’re apprehensive about.

I imagine you’ve been told a lot by your treatment team already but we do have an information booklet on preparing for transplant which is an excellent starting point: https://bloodwise.org.uk/sites/default/files/documents/undergoing_high_dose_therapy_autologous_stem_cell_transplant.pdf

We also have a number of blogs by patients who have been through the transplant process which you may also find of some use – I know I’d certainly have benefited from these in the weeks building up to my own transplant for CML 12 years ago. Mark Noblet’s is a particularly good one and here’s a link to his profile: https://bloodwise.org.uk/people/mjn

I’d also thoroughly recommend getting in touch with our friends at Anthony Nolan as they are the transplant specialists and offer so much in terms of support and information that might prove useful to you.

From a personal perspective I’d be lying if I said that my transplant was a pleasant experience but it was something that I was able to get through thanks to my brilliant treatment team who had something for all eventualities. So when I felt nauseous they had something to combat it, when I had a headache they had a pill to take away its pain and the morphine helped me to deal with some of the other nasty side-effects like mucositis.

The transplant day in all honesty was a complete and utter anti-climax with the donor cells arriving in a bag and being infused in to me over the space of a couple of hours. It was completely painless and was like having a blood transfusion.

I was amazed by just how good they were at making everything as comfortable as possible and that was 12 years ago. The process has got even better since then so there is plenty of reason to be optimistic despite all the uncertainty that lies ahead for you.

I hope that you find this useful and that it puts your mind at rest to some extent? If you ever need any further help or support we’re only ever a phone call or email away on 0808 2080 888 or support@bloodwise.org.uk while I’m also more than happy to talk to you more about the transplant process if you feel that will be of any help to you?

29.07.2016

Hi Martha. I could not believe what you have gone through so far. Most people who have come through cancer always have in the back of their mind the fear of relapse. I had multiple relapses of HL, but am 7 yrs in remission now. To go three years clear, to have built up your life again, and to have reached a stage where you were starting a family, then to be told that the cancer is back and you can't have this baby after all....life can be extremely cruel. I also had a SCT and as Andy said, it is not a pleasant experience, but the team were very good giving me drugs when needed for pain, and also for infections picked up. I hope things improve for you soon, and that the transplant is a success. My best wishes to you and your husband.

 

30.07.2016

Hi Martha.. Wow, what a journey you have been on already. I can't imagine what you have already been through. Life can be very unfair. I went through a stem cell transplant last year for Hodgkin's Lymphoma and I am now 13 months cancer free. I also had no idea what to expect going into my transplant and was very apprehensive and after reading booklets and people's blogs about the transplant process and then knowing what was going to happen it defenitly put my mind at rest. I found the chemo just before the transplant day quite hard compared to other chemo's i had before, quite a lot of sickness and tiredness but i mostly slept the days away and as Andy said above the transplant day itself is an anti-climax and it's over in a matter of minuites. I found the weeks after the transplant day the hardest but everyday was closer to going home. Living with cancer and the fear of relapse will never get any eaiser but there are amazing people to support you through it. Wishing you all the best for your transplant x You can read my blog here: https://bloodwise.org.uk/blog/living-hl

01.08.2016

Hi Martha, 

Thank you so much for sharing your story - I certainly needed a tissue reading through it. You have had such an unbelievably difficult time, and you still have the strength to write a blog like this so if there are others going through something similar they would have some support.  It's quite incredible!  

As Andy says, we are only a phone call away if you ever need anyone to talk to so please do get in touch if you think it would help.  Thank you as well for telling us about Petals, it sounds like an wonderfully supportive charity, and we will certainly be signposting them to anyone who is going through anything similar.

I wish you all the best for your transplant, please do let us know how you get on if you're able to?

Best wishes, 

Kate 

 

 

 

MJN
02.08.2016

Hello Martha. I'm amazed by your courage and openness in writing this blog. It must have broken your heart and I cannot imagine the impact on your mind.

I can relate to some but not all of what you've been through and what you are now facing in the months to come.

I had a donor stem cell transplant in 2014 following 2 years of treatment for Hodgkin Lymphoma. At the outset I was unable to store any sperm and at that stage I was not especially concerned with this, only with beating the cancer, but after the transplant was a success, the reality of not being able to start a family in the usual way really hit both me and my wife very hard. 

The stem cell transplant process is tough but one that you will face with courage and determination. I know this from reading your blog. You will hit the lowest physical point of your life but from that point you will begin the journey back to health. It's different for everyone which is why I would never say that you'll experience one thing or another but I can offer some words from experience.

Stay strong and be determined to get out of isolation as fast as you can. Exercise when you can (even tiny sit ups in bed can help) and eat whatever and whenever you feel you can stomach - even if it's a nasty nutrition shake.

Have visual reminders of what you've got to look forward to when you return to the real world; cover your room with photos, posters and any phrases that wil help you to overcome and keep your mindset positive. I had family photographs and a card on the cupboard at the side of my bed that simply said, "If you're going through hell, keep going." The words of Winston Churchill that made me smile and grit my teeth every time hell seemed all too real.

Take a gentle light to place in a corner; the room lights will be too bright and sometimes you don't want to lie in the dark.

Blog. Write it down. Pour it onto the screen and share it. It's like a meditation and somehow seems to release some of the emotion that's boiling inside you. 

Two years down the line I still write, often just for myself. We're exploring all of the ways that we could start a family because the time is right for us. 

You can make it through and you absolutely should think about recovering to start a family. The transplant is the first step but you have it in you to climb mountains.

If you want to get in touch with me, email Andy Jackson at Bloodwise and he'll give you my details. 

Look after yourself and stay strong.

Mark 

Aileen Lamb
02.08.2016

Hi Martha,

What a brave and beautifully written post. I'm so, so sorry for your loss. 

I can only offer you my experience of a fellow AML patient (diagnosed in Sept 2015 and went into remission after my 1st chemo I had a high risk FLIT3 mutation so required a stem cell transplant to have the best odds of beating cancer).

I received my transplant from an 18 year old UK male donor on 19th February. This makes me almost six month port transplant. I'll not lie to you - the pre-transplant chemo was rough and the post-transplant effects were hard. However now, almost six months on I genuinely feel pretty good. 

My energy levels are actually improving so I'm probably now operating on about 60% of my pre-AML capacity and this is improving with exercise, reduction in drugs and simply time.

Other SCT veterans have given you great advice above. I'd simply echo what they've said - be as gritty and determined as you can be. Move - even if its only walking around the room/ward every day. Eat anything you can - you may have strange cravings....that's fine, just as long as you eat. Make little goals for yourself and celebrate when you achieve them. 

I blogged through my experience and if you'd like to take a look you can find my ramblings at 

Lizzie Goates
03.08.2016

Hi Martha,

Just to echo what others have written above, your blog is so beautifully and eloquently written. Although I cannot even begin to imagine everything you have been through and are going through, I am just so terribly sorry for your loss and please accept my sincere condolences. Please know we are always here to talk to and as my colleagues Kate and Andy mentioned above we are only a phone call or email away.   

I wanted to thank you for writing this as well, for so selflessly doing it for anyone else going through a similar experience. Believe me this will really help someone else and may well have done so already. I hope you have taken some support  and comfort away from the other wonderful comments posted, and know that you are certainly never alone in this, take care Lizzie

George smiling, wearing a bow tie and silly hat for New Year 2017/18
23.08.2016

Thank you, Martha, for sharing this. I can't add much to what others have said; like some of them,  I can relate to parts of your experience (relapsed with ALL just when my wife and I were looking into the possibility of having a baby; had FLAG-IDA treatment but needed a trial to get me into remission; had a transplant two and a half years ago), but can barely get my head and heart around the loss you suffered. Cancer can take away so much from us, but I try to focus on the life my treatment has still enabled me to have. Some losses, though, will always burn deeply in our hearts. I wish you all the very best for your transplant and beyond. None of us knows what the future will hold, but by holding on to each day, each other and the small blessings that remain, hopefully we can face whatever future that may be with the strength and love we need. I'm heartbroken by your story but in awe of your courage in telling it and lofting your head towards a different future. You give me strength in facing my own challenges, and your words will help so many. All the very, very best for your transplant.

23.08.2016

Dear Martha, what courage it takes to share your heartbreaking story , as a mother with a son who is two years on from having AML , I know the worry of it returning, in your case a bitterly cruel one, which no one should have to go through. I really hope and pray you find the support you need and I wish you much love with your continued fight against this cruel disease. I will follow your story, and know that one day we will see photos of you with a much wanted family. Love and many blessing to you and your family Lynn xx

 

 

 

your s

23.08.2016

 wonderful to see and hear you doing so well Aileen post transplant , well done xxx

25.08.2016

Dear everyone, I am so grateful for all the responses here and on Facebook! They have really helped me as I was admitted yesterday and had my first dose of reduced intensity conditioning. So far so good, I've settled into my room and luckily  already knew most of the staff on this ward from before so it doesn't feel too strange. It's early days as I am having about two weeks of chemo (in a clinical trial) but taking it one day at a time and keeping distracted with dvds, books and Great British Bake Off!

 We were successful with our IVF and now have hope for the future in the shape of frozen embryos, I've had to put that to one side for a few years now to focus on getting well and fit again. I hope some day someone comes across this post who had the same experience and I can help them the way you've all helped me. I'll try to blog a bit more as things progress! thank you all again x

Lizzie Goates
14.09.2016

Hi Martha, 

Sending all my thoughts and best wishes that your stem cell transplant is going well. We are all rooting for you and here to support in any way we can. Hope to hear an update from you soon and hope you're okay. Take care