Just diagnosed

My best wishes for a smooth progress, I hope you are done and out and well again before I get in, otherwise it would have been nice to say Hi there.

Probably won't be in for a month or so. The SCT ward is C10. 

I shall know more after next weeks meet with Dr. there. I have a very likely donor identified.

Hello all, thought I’d give an update on where I’m at. Also reaching out as I am really struggling today. Feel so guilty laying all this on my partner and best friend. So, have finished first bout of chemo plus 2 further weeks in hospital and am now home for 9 days reprieve. I should be enjoying the break but can’t stop weeping. Feel absolutely rotten. Been suffering terrible migraines and sickness for last 2 weeks and am permanently nauseous. Was told last week that chromosome check on bone marrow was high, So I will also need a transplant. Didn’t really understand what this meant but didn’t ask any more questions as so scared. Icing on the cake was catching covid in hospital. Thankfully symptoms are mild so far, probably cos I had it in February and was very poorly. Coming home and seeing ‘normality’ everywhere is making me so sad. I hate feeling sorry for myself. Finding it so incredibly hard to be positive and am dreading round 2. Hope everyone else doing ok. 

Hi Coot

Sorry to hear you feeling down.

Hang on in there. My wife had very similar feelings after her first of 3 chemo sessions, sickness, nausea and a bit depressed. She did however say the first was the worst as she didn't know what to expect.

Will you have further sessions of chemo or wait to go for stem cell transplant?

It didn't help getting covid, that must have made you feel terrible on top of everything else. 

DO NOT FEEL ANY GUILT.

I was so so frightened for my wife throughout her whole process but understood all her anxieties and worries and spent hours and hours discussing the process and helping each other. I'm sure your partner totally understands you very well. Positivity is so important at these time and can help you through this treatment however hard you think think this is. 

Sorry to hear you have got to have the transplant, hopefully your team will find a doner quickly. 

As said previously, my wife had 3 chemo sessions over 7 months. She was clear for 20 months and then relapsed. Had more treatments as outpatient with injections and tablets prior to her Transplant last August. Now doing great, no Hospital visits anymore, immune system back to good levels and feels fine.

Please Coot, stay focused and as positive as you possibly can, I know it's absolutely horrific to go through this not just for the patient but also their nearest and dearest, but with support and help from everyone is vital.

You will do this Coot.

All the best

Fulhamboy

Thanks so much for taking the time out to reply to my post. I’ve been home 3 days now and physically have improved significantly. Been out walking every day and have no issue doing couple of miles or so. Emotionally still very much up and down, night time is the worse but working hard to deal with the anxiety. 
I need to start asking the doctors more questions to clarify where I’m at and to start writing things down. I often just hear white noise when they see me on their daily rounds. From what I gather I will need to be fully in remission to have the transplant. They did warn me that the chemo may need to more aggressive next time; I have a bone marrow biopsy Friday to see where I’m at. Didn’t help my anxiety levels when one of docs said I still had a good chance of coming through this, when he broke news that my AML was one of the worse kind. At the outset of treatment, another doctor had said he would cure me. Always going for the worse case scenario, I interpreted the former comment as meaning there was a fair chance I wouldn’t make it. I HAVE TO GET OUT OF THIS MINDSET. 
Going to do my best to focus on enjoying last few days at home before round 2 begins. 
Thanks again for sending me positive vibes, FulhamBoy

HI Coot

Pleased that your feeling stronger physically, thatsa good sign and will help you mentally as a result. 

OK so you may need more stronger chemo, that doesn't necessarily mean the side effect will be any different. At least you've faced the first round so next time you have an idea of what's to come, just stay positive and as fit as you can.

Standard procedure for bone marrow biopsy after first and subsequent treatments. My wife was in remission after the first session as many often are with the regime for AML often requires 3 sessions. My wife had a fourth after a mix up with her local hospital and the main Cancer team in London, in reality she didn't need it. Luckily each time was that much better.

The medics do sometimes say things that patients don't want to hear, some are very positive, others a little more reserved. It's important to remember that EVERY ONE OF THEM is there for you, they will do everything they can to get you through this.

I spend 7 months listening to the groups of doctors coming Into my wife's room and giving updates, some very stern, others very open and engaging.

Just write your question down on paper so not to forget and ASK THEM ANYTHING. No guarantee they have all the answers, but you can rest assured that they will try and you will feel better for asking.

Always here for you Coot.

Best wishes

FULHAMBOY

Hi Coot

Just like to add following another read of your post.

You said the doctor told you that your AML was one of the worst kind. The fact is however, after doing some research at my wifes diagnosis, AML is in fact one of the most aggressive types of leaukeamia, THIS DOESNT MEAN IT CANT BE FIXED.

The fact your team know what you have will lead them to providing the best treatment.

Do you know anything regarding your markers. Eg. Are you NPN1 positive or negative and are you FLT3 positive or negative. The differences will determine your treatment.

Regards

Fulhamboy.