MDS & Pregnant Update 2

Please post here your experiences of MDS as a patient, carer, family or friend

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Milly
Posts: 6
Joined: 05 Mar 2015 20:27
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MDS & Pregnant Update 2

Postby Milly » 17 Apr 2015 22:48

Hi Again Everyone

I keep meaning to update you all but always forget so I've made a point of sitting down this evening to do just that.

Well scan went really well, I will be 18 weeks this Saturday and looking forward. Again as always my consultant and the MacMillan Nurse at the hospital have been a tower of strength to me especially on the odd occasion I feel a little low but I'm keeping my spirits up most of the time. Looking forward to finding out the sex of the baby, I have names already in mind fitting for the miracle I have been blessed with, after all the baby is the one that highlighted my illness or I'd never have gone to the doctor. The consultant is leading my treatment for both the MDS and birth which I feel really pleased about, I must say she does make me feel confident with her advice and treatment plan.

My last transfusion only lasted 2 weeks but I think this may be due to a cold I picked up from my partner....doh but I seem to have recovered quite quickly from it which is unusual I normally have them for what seems like months.

I'm currently dying (excuse the pun) to go out and buy baby things and essentials like a cot but am very nervous of tempting fate so to speak so just got a couple of little essentials such as baby grows etc.

All the staff in the haematology dept are great and already becoming adoptive aunts and uncles which makes me smile, I'm sure one of the nurses had a tear in her eye when I showed her the scan.

My sister has also been tested to see if she will be a match for the eventual BMT, awaiting the results at present.

So in all bloods seem to still be holding very well on all levels, baby is healthy and very active (during the scan it took 30 mins just to get the one image they needed as it was playing bouncy beds as well as being stubborn about being in the right position).

I'm having a private scan this Sunday just for reassurance that everything is still well more than anything, I'm so impatient about getting my baby bump, and hopefully if possible they may be able to tell me what sex baby might be:)

I hope your all doing well yourselves and will again update you soon.

Thank you for all your support xxx
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: MDS & Pregnant Update 2

Postby sophie » 20 Apr 2015 13:32

Dear Milly,
glad the pregnancy is progressing well - and you have a really good support team.
Further to my initial reply - I wanted to let you know of a new charity we have just discovered through our colleagues at Cancer52:
Mummy's Star - they offer support to cancer patients during pregnancy and within a year of giving birth.
Not sure if you knew about them - but here is the link to their website http://www.mummysstar.org/

We don't have your contact details - but if you'd like to get in touch - please email us on mds-uk@mds-foundation.org
Best wishes,
Sophie


sophie wrote: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.pregnantwithcancer.org/
http://www.cancer.net/coping-and-emotions/sexual-and-reproductive-health/cancer-during-pregnancy
http://www.nccn.org/patients/resources/life_after_cancer/pregnancy.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.
Milly
Posts: 6
Joined: 05 Mar 2015 20:27
Contact:

Re: MDS & Pregnant Update 2

Postby Milly » 21 Apr 2015 00:15

Thank you Sophie I will look into the site you've sent me.

We found out I'm having a boy yesterday which is exciting, absolutely no doubt of the sex as someone was more than happy to display the crown jewels so to speak.....hehe. Also confirmed that baby is fully healthy and correct measurements and so on for the stage I'm at and everything is as it should be so I feel very happy that the pregnancy is healthy so just need to keep myself healthy obviously as a priority.

Thank you as always to those who read my posts I will continue updating as things progress along.
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: MDS & Pregnant Update 2

Postby chris » 26 Apr 2015 12:57

Dear Milly

So pleased that everything with the pregnancy is going well and that you are able to function well with blood transfusions. Pregnancy can be a worrying time even when the mother-to- be is in good health but you are going to be very closely monitored so you can be reassured that everything is OK. You now need to relax as much as possible and keep healthy, eat good foods and exercise gently. My own daughter is 30 weeks pregnant so I understand a bit of what you are going through. Her close friend just found out she was pregnant and at the same time got a diagnosis of Type 1 diabetes so she also has lots of issues around the safety of the baby when the diabetes was uncontrolled and also how to balance the insulin levels with the additional needs that pregnancy brings. The wonderful thing is that our bodies can protect babies very well - even in difficult circumstances.

Do keep us updated and of course we are wishing you well at such a special time.

All best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
seanieb76
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Joined: 18 Jun 2015 21:00
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Re: MDS & Pregnant Update 2

Postby seanieb76 » 19 Jun 2015 14:42

Hey Milly,

Thought i'd post and let you know i'm hoping things work out for you! I'm new to the forum and was moved by your situation. I was diagnosed with MDS start of last month and those first few days were a blur. I'm 38, was perfectly healthy and very active until the shock. Also, my wife is expecting our second baby and we'd had our 2nd scan just days before my diagnosis.

Anyway, my situation isnt the same as yours as i'm not high risk although now transfusion dependant - so now awaiting referral to Kings for confirmation of the diagnosis by my local hospital which is Thrombocytopenia and Hypoplastic MDS.

Anyway, best of luck with the little bump!

Sean
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: MDS & Pregnant Update 2

Postby chris » 21 Oct 2015 18:16

Dear Milly

I was wondering how things were with you? Hope all went well?

Best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex

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