It’s been really touching reading everyone’s stories - I feel some hope from having done so. My dad recently has been diagnosed with Acute myeloid leukaemia (AML) (as recent as the last couple of days). He is 58 and has a clean bill of health otherwise. I’m so scared for the future and idea of losing him - can’t imagine my life without him.
We are all at home (all being me, my brother and mum) to support him. Hoping he starts treatment soon, just waiting for the update on what mutation (if any) he has. I don’t think we will hear for at least another week, is this wait normal?
The doctor has said based on an initial look at the bone marrow my dad will either do 4 rounds of chemo or 2 to 4 rounds plus stem cell transfer. Am I neurotic for wanting him to get a stem cell transfer? The idea of him not getting this worries me.
I’m also finding it really difficult to not worry about how at risk he will be from other illness. Does anyone have any tips on how they adapted to the new levels of hygiene/safety/diet required? I think I will be back home a lot more now so have my work from home set up being arranged at my family house, hoping to help my mum out with the cooking.
Would appreciate any advice, this diagnosis has turned mine and my family’s world upside down.
Welcome to the forum, and thank you for taking time to reach out at what must be a very difficult time for you and your family.
My heart goes out to you all.
Its clear, if I may say so. you have a very warm and loving family, and that I am confident will be very comforting for you all.
I’m a very similar age to your dad, and got a diagnosis of Chronic lymphocytic leukaemia (CLL) earlier this year. I do remember how it impacted my family, not least my wife, my son and my daughter, so I feel I can relate to your circumstance a somewhat. My experience has been that this forum is very supportive, and if you feel comfortable to feel free to let us know how things are going forward.
I’m sure you have lots a of questions and to that end you may find the section - My friend or family member has blood cancer | Blood Cancer UK - a good place for information and support, but also please remember you can always speak confidentially with our support services team for information and support on 0808 2080 888
Thank you so much for your support and kind words. Do you mind me asking if there was anything your loved ones could do that you found helpful? I am also quite worried about the risk of infections when he is home around treatment times - if you had any advice on how you have been coping with reducing the risk I would greatly appreciate it. I really want to help my dad and try minimise the risk of other illnesses but worried it’s perhaps inevitable.
Hi @Cdaughter - didn’t want to read and run. Just wanted to send my every good wish to you, your dad and your loved ones. We have experience of Acute myeloid leukaemia (AML), though at present we are currently dealing with two other blood cancers for which my husband has not long finished aggressive chemo.
What struck me was your qt re infection whilst on treatment. I think you’re very right to have a focus, amongst other ones, on this. Your dad’s team will likely give clear instructions re this and Blood Cancer UK have lots of info on this for you to look at. One thing I vividly remember being told by the drs as my husband’s immune system crumbled was that he was more likely to get ill from the inside out rather than outside in. I’m not sure I understood it fully but it’s exactly what has happened - and for that reason has been outwith our control. What I’ve done as his loved one has been to be fully aware of risks, known what to look out for and not hesitated to get medical help as needed. It means he has survived sepsis twice now.
I’ll be honest though and say I am fastidious about reducing infection risks to the minimum. Given the current flu situation, we are reducing all contact, I’m going back to online shopping, we have changed Christmas travel plans, our uni student son is not socialising and we are content these are the ways that work best for us. I’m not suggesting for a moment that others need to do similar - this just works for our infection fears and until we know his post chemo results.
On a different note, I have also supported my own dad through cancer. It was incredibly tough but the privilege of my life, as is supporting my husband currently. It doesn’t leave much time for me or my needs so if there’s any way you can try to carve a little time for that from the beginning, I’d really encourage this.
I hope you continue to post here where we can all support you. Take care
Thanks for your kind words and I’m so sorry to hear about your husband - I’m sending you and your family well wishes. I really hope for you he gets better.
Your advice regarding infections makes a lot of sense and something I have shared with my mum also. It may be over kill but did you receive any advice regarding pets? I’m wondering if they too increase any risk of infections.
I’m also feeling quite anxious about how long it’s taking to start my dad on treatment. He received his first blood test results that indicated Acute myeloid leukaemia (AML) 4 days ago and has confirmed Acute myeloid leukaemia (AML) 2 days ago but it seems from what I’ve read online that most people start treatment within 4 days - although this doesn’t seem to be the case as we are just getting more blood tests and a transfusion in 3 days. Any advice you have I’d greatly appreciate, is hard to know what to expect.
Hi again @Cdaughter - I know waiting for treatment/action of any kind is so very hard. I also understand that we want our teams to have considered all the info they have, that they know what else they need in order to fully create what they think is the best treatment plan. And one they, and us, have confidence in. I can, of course, only say with the benefit of hindsight. Our team had to choose between two courses of treatment and took a week to do so - this also allowed for further blood transfusions. I cannot tell how important these are when required, and I think they buy more time as they’re trying to build up all important numbers. Numbers that you’ll never have known before and which now, potentially, become an area of obsession.
We don’t have any pets so I’ve no words of wisdom re that. I do know how important they are and the comfort they can bring. I haven’t heard of anyone needing to do anything different in relation to them. Id say hold them close and use your pets as a safe space.
Thank you too for your kind words at such a hard time for you, it’s appreciated. I hope with everything I have that better days will come
I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 21 yrs ago. Thinking back Chronic lymphocytic leukaemia (CLL) was called ‘the old mans condition’ , I was a 53 yr old female and the only blood cancers talked about were Leukaemia’s and Lymphoma’s. I was told no foods could help and to avoid children, pets and gardening, especially pets with grooved claws that might hide all sorts of things.
Times have changed and we know there are now over 130 blood cancers.
I believe in a healthy balanced diet, with the odd treats. I believe in checking everything out with my specialist nurse, consultant or medical team and keeping up to date with all appropriate vaccines. I believe in fresh air and appropriate exercise. It is now realised that avoiding children and pets is not possible and therapeutic dogs are taken into hospitals.
I am not medically trained and we are very complex individuals so I think it is worth checking out infections and symptoms with my GP as soon as possible.
I think be vigilant about general hygiene and visitors with bugs, Perhaps consider wearing a mask in crowded places.
I realise that there is a lot of waiting around and not knowing in the medical system. I try and keep it is the day, why ruin today for things that may not happen.
All the thoughts and feelings you have sound very normal to me. Give yourself times to come to terms with things. Don’t beat yourself up and perhaps avoid searching the internet. Everyone is different and some test results take longer that others, any treatment plan is tailored to the individual patient.
@GenesisDevice and @judesadventures have given you great advice/ Prepare for appointments with your dad by writing questions down and my trick is to be pleasantly assertive. The Blood Cancer UK nurses are there for you on 0808 2080 888 and be very kind to yourselves. and keep posting,
Thank you for posting on the forum again, its lovely to hear from you.
Thank you for asking about what my loved ones have done / are doing and reducing risk.
Before I answer your question, I will say, everybody is different, how we react, how others react and how things impact us, so what helped me may not be helpful to others. Also, I’m no medical expert, so I’m not in a position to give advice or guidance. That having been said, the first and most powerful thing for me were the hugs I got from my wife and children. No words were required, just silence and reassuring hugs. These often happen, and they are very calming and reassuring. I’ve taken time to make sure everyone knows they can ask me about it at any time, so we never shy away from it. As for infections, I’m quite fortunate to have a retired nurse as a wife, so I am often reminded and encouraged to protect myself, wash my hands, keep a facemask with me if I feel I need to wear one.
Beyond the above, I do try to socially distance, especially if it is apparent that some one in the area has a cold or cough for example. Its a little bit like ‘living in a covid world’ I often say. The other way I try to stay healthy is to ensure I eat well, only having good fresh veg and fruit as well as a small portion of meat and potato, and I asked my GP for a gym referral and this gives me a focus as well as providing a feel good factor that takes my mind off of things.
I hope you find some of the tings I’ve mentioned helpful.
Hi @GenesisDevice@Erica@judesadventures thank you all so much for your replies. I’m sorry it’s taken me some time to reply, we have been waiting to hear more news. My dad is going to start chemo next week, his blast count in the bone marrow is approximately 70% - which is really scary. We are yet to hear what mutation it is, I’m really hoping it’s not an aggressive one and that the first round of chemo significantly reduces the blasts to less than 5%.
The way the doctor was discussing it they sounded like they’re going to throw everything at it (and that he’s healthy otherwise so this is a good sign) but I’m absolutely filled with dread. The uncertainty of this and the stats are making me so anxious.