12 weeks pregnant with 1st child and diagnosed high risk MDS

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12 weeks pregnant with 1st child and diagnosed high risk MDS

Post by Milly » 06 Mar 2015 15:42


I'm searching for anyone who may of been in a similar situation that I now find myself in as there seems to be no one medically qualified who can give me any indication of possibilities etc.

I am 39 and waited my whole life to meet the right person to have a child with, I didn't wait due to career choices, it was purely down to my own principles of believing I wanted the right man and it was for life even though I know that things change I wanted to be sure in myself.

Well in the first week of January I discovered having met the right man that we are expecting my first child, understandably we are elated, however I started feeling very tired, continuously dizzy and run down with this constant pulsing in my head. I asked my midwife on my first visit and she advised to arrange for blood tests with my doctors for anaemia, this I did immediately. I had the tests in the morning and at 5 that evening the doctors phoned me and told me to go straight to hospital and I needed a blood transfusion without delay. I followed my instructions and went to find I had a blood count of 5.1 and needed at least 4 pints of blood transfused into me, after 3 more sets of bloods I was transferred to another hospital for a bone marrow sample.

To my horror it was explained leukaemia cells (12%) were seeping into my blood and they needed to find out why, after an anxious wait the consultant told me I had MDS and was high risk to develop AML. My choices were to terminate the baby I longed for all my life and be treated with aggressive chemo and follow with a stem cell/bone marrow transplant or take the chance in waiting.

Here's where the confusion started, no one can give me clear indications of how this will affect the baby, how long it may take to develop to 'frank leukaemia' (consultants words), if there's treatment available apart from supporting me whilst pregenant etc etc. I understand that all these questions are hard to answer as it was explained to me the MDS experts had never come up against someone my age and in the first trimester of pregnancy with my set of unique circumstances. My consultant contacted an expert in Hull who says that I'll terminate before 14 weeks naturally, or if this doesn't happen at some point along my bloods will go to low to support the baby further along and terminate. My platelets just a week and a half ago were at 27 and I was told there was nothing I could do to naturally help these increase yet yesterday they'd miracously gone upto 41.

I think anyone can imagine the torment I'm now going through. I know that I have to decide myself and the consultant assures me she will support me whatever my decision, but I'd really like to find anyone out there who faced this dilemma and what the outcome was. I think I will hate myself for the rest of my life if I terminate this baby but if mother nature decides it's not meant to be I could accept that, another consultant has told me that the treatment drugs and course planned will leave me with less than a 2% chance of being fertile so that extinguished the any glimmer of hope I had if I did go down the route of termination medically.

Can anyone offer guidance or experience of this kind?
Posts: 249
Joined: 20 Nov 2008 14:05

Re: 12 weeks pregnant with 1st child and diagnosed high risk

Post by sophie » 12 Mar 2015 15:05

Dear Milly,
so sorry to hear about your extremely difficult situation.
I am pretty sure that nobody on this forum has had a similar experience - but I know many readers have been very moved and concerned about you.
They alerted me to your message - as we only tend to get involved on the patient forum when a situation is particularly complex - like yours for example.
We also don't have your contact details - as this forum is anonymous. Your email address is only available for admin purposes.

Could you please get in touch with us - so we can start to help you?

We would like to talk to you about 3 suggestions that may help you come to a decision.
1 - We know of another young lady - Daisy - who had AML and a successfull transplant. She had to have her eggs frozen but there are no guarantees she would be able to conceive naturally in future. She had to think about this before treatment that ultimately saved her life. Her circumstances are different to yours but knowing her, I think you may benefit from talking to her.

2 - There is another blood disorder - Aplastic Anaemia (AA) - which although not a cancer - also necessitates drastic treatment sometimes - or a stem cell transplant. Typically AA patients tend to be younger - with many aged around 20 at diagnosis.
I'd like to put you in touch with some of them and the Aplastic Anaemia Trust - who may have come across similar situations.
Many of the younger ladies who had AA would have been discussing the topic of pregnancy and fertility before having their treatment - so I am sure they could assist in some way.
Some people have gone on to have a family after their treatment - and they could share their experience with you as well.
The patient liaison person there is Bryony Partridgehttp://www.theaat.org.uk/patient-resources

3 - If you have not yet been offered it - you and your partner would definitely benefit from some counselling - in order to make your difficult decision.
King's College Hospital and Manchester/Christie's have a haemato-oncology counsellor. There may also be other counsellors available - you would have to ask your clinical team - or your GP.

I also looked up a few potentially helpful links - in case you had not come across them yet:
http://www.cancer.net/coping-and-emotio ... -pregnancy
http://www.nccn.org/patients/resources/ ... nancy.aspx

But please do get in touch with us - call us on 0207 733 7558 - so we can explore how to best help you.
This brief message is just a start.

Warmest regards Milly - and hope we get to speak as soon as possible.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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