MDS and AML

[sportydad]

Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem cell transplant in february.

I am hoping there are members that can give us encouragement that they or their loved ones have come though the other side as would like to offer that kind of positivity to my partner who is 54 years old. Staying strong but any recovery stories welcome.

[Jm954]

Hi there,

I'm sorry to hear that it's taken so long for your to get to the reason for your partner's tiredness. This diagnosis must have come as such an unexpected shock and you will still be coming to terms with what all this means and the new terminology.

The chemotherapy is intense but they will be very well looked after and every care will be taken to monitor his response, avoid infections and provide support in every way.

I hope you've been given some information booklets and Leukaemia Care have some excellent ones on their website here:

leukaemiacare.org.uk/suppor...

Here is the AML booklet: media.leukaemiacare.org.uk/... and the MDS booklet. media.leukaemiacare.org.uk/...

There are quite a few different chemotherapy treatments for AML and there are booklets for almost all of them and transplants on the website.

If you need someone to talk to there is the helpline and also a counselling fund. It's all here leukaemiacare.org.uk/suppor...

Let us know how your partner is.

All the very best

Jackie

[sportydad in reply to Jm954]

Thanks Jackie for your kind words and advice links , they will be a great help . Just talking about things to others who have been or are going through the same thing feels positive and encouraging so I will do my best to keep him strong! Thanks so much x

[Blue_Turtle_UK]

I’m so sorry for your partner’s diagnosis. It’s all so surreal in the beginning.

I was diagnosed with AML in Nov 19 and had a stem cell transport in May.

I would highly recommend the reading below, it’s difficult to take everything in when your consultant speaks to you.

Hang in there. There is a lot of isolation and it can be tough but keep going. There is absolutely nothing wrong with losing it occasionally, totally normal in the circumstances, but stay strong too.

I have had some wonderful moments with my family in between hospital stays. And some lovely messages and conversations with friends throughout. It’s still early days for me to give you good news but it’s looking positive.

Just remember that neither of you are alone and you must ask for help when you need it x

[sportydad in reply to Blue_Turtle_UK]

Thanks so much Blue Turtle and great to hear that you are doing well after the stem cell transplant . He told me he was scared last night so I need to be the rock to keep him strong. They have admitted him today and the house seems empty already so know its going to be tough for us both but we have a young son to keep me smiling and that gives purpose. I am told that its after the first 10-14 days that he will hit rock bottom from the chemo so need to keep up the positivity for him to help get through it. You said you would recommend the reading below but not sure what reading this is , can you update me and thanks for reaching out , it means so much to me so and makes me feel that we are not alone. x

[Blue_Turtle_UK in reply to sportydad]

Sorry I meant above! The links in Jackie’s message.

Do take some time and look after yourself too. I know my other half has found it tough with our kids. Weirdly chemo is often easier at its worst as I often slept through it! X

[sportydad in reply to Blue_Turtle_UK]

Thanks ! That makes sense now , think his chemo will start on monday so will see how things go , got everything crossed! x

[2003UK]

Hi, a great big welcome. I have CLL and so cannot answer you question. but it sounds to me that your partners medical team have a good plan in place.

What I have learnt is that I need to write a list of questions before appointments and that can include fears, thoughts and feelings, symptoms, practicalities and I now realise it is often up to me to remind people of medical history, all medications and allergies.

We are all special, unique beings and there are positive stories out there.

I think being the partner or carer is the most difficult role in the would because I believe you often feel so helpless. My personal tip is to look after yourselves and have some treats.

If you look on the Leukaemia Care charity website there are downloadable booklets for MDS and AML. If you would like to speak to someone the Leukaemia Care Charity helpline is open Monday - Friday 8.30am until 5.30 pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Take care both of you.

[sportydad]

Thank you 2003UK for your sound advice and info. I think what you say is very true in that everyone is different and we just need to remain positive . I will certainly get a few more treat takeaways and keep my spirits high for the sake of our son . Thank you for reaching out , it's lovely to know there is such a supportive network out there! x

[sportydad]

So 11 months on here is the update and what a journey we have been on. My partner had a tough few months in Oct / nov last year with double pneumonia, sepsis and covid and the ventilator doing 96% of the breathing for him , thankfully after weeks in ICU he pulled through and was sent home perhaps a bit early as he fell on the stairs and got an infection in the knee and needed a knee operation so was moved to kings college for a few months then to eltham community hospital for rehab . After 7 months in hospital with limited visiting allowed due to covid we got him home in April for 3 months without too many issues and was recovering well before an infection left him with anemia requiring several blood transfusions and taken back in to hospital, that was 7 weeks ago and he came home last Friday for a few days only to have headaches and being sick to be readmitted yesterday. We had a really tough meeting with his consultant a few weeks back who gave us 2 options 1/ to come home for palliative care with weeks to live or 2/ to try one last lot of chemo in the hope that we can get back in remission to have a stem cell transplant . Thankfully he went for option 2 and the chemo course went well but now we have the worry that he is back in hospital. This 11 month journey has been so tough emotionally but he is a fighter so need to remain positive and somehow hope we can come through the other side. We have a young son and loving family so he has so much to live for and praying hard he can get back into remission ( blasts were at 10% at last scrape) to be able to have the transplant. ( they have a 90% match ) waiting. This is such a difficult journey and I send my prayers to anyone else who is in a similar situation.

[Blue_Turtle_UK]

I'm so sorry, I have only just caught up with your update. I presume things have moved on in the last 2 months.It always seems so cruel that you have to deal with all the additional health issues when Leukaemia on its own is enough!

I know the isolation can be really demoralising and I can't recommend counselling enough. Mine came through my hospital, albeit remotely, and I found it helped to have someone independent to talk to. My husband also used the counselling remotely and I think it helped when I was stuck in hospital and he felt so useless.

I hope that you continue to move forward.