AML 11 MONTHS ON

Just posting update.

My wife has just received a call from her Hospital team with the news of her recent bone marrow biopsy.

I am delighted to tell you that the results are negative with no evidence of disease. This is fantastic news and means no further treatment and continue with the 3 monthly biopsies.

Wishing all the best of luck to all and keep praying and believing.

Nick

High 5 Nick

This is great Nick. My wife was diagnosed 5 weeks ago and we are jsut waiting for ehr to come home having completed induction and neutrophils climbing. I am hoping that we will be on same positive journey and outcome as you and your wife particularly has had. Thank you for sharing. 

Hi RobBas

I do feel for you and your wife, if you want any help or information on the on going treatment or any questions you have please dont hesitate to ask.

Obviously every case is different, with various regimes used to try and stop the AML as soon as possible. I would expect there may be much you would like to ask......please do. I will try and help wherever possible. One thing to remember here and is so very very important, as I was told at the early stages of my wifes diagnosis by others on this site, this will be a marathon and not a sprint with many highs as low. You must stay strong and believe.

Please dont hesitate to ask.

NICK

HI again RobBas

Just wanted to let you know that once again we had a call from my wifes consultant yesturday with the news that there is no evidence of disease once again following her December biopsy, thats now 9 months, stay strong and believe, the technology and treatments are improving all the time.

Regards

Nick

Hi Nick

So I  read more of of your "story" in other posts you had done.

And noticed some similarities. 

We, both my wife and I work for NHS like I saw you said you did too . We are both actually consultants in different specialities. This does not make it any easier and haematology and AML especially is an area we both are learning aboit like anyone else.

The other similarity I picked up on was like you had described, my wife is uber positive, very strong and seems to just take the whole experience in her stride in many ways and all her visitors are amazed how she has just taken this head on and because of how the illness is, she just appears "well" and you can't quite believe she has had this illness inside her. I'm meanwhile struggling. I can struggle to stay positive as I am a always thinkingand aware of the long road ahead, I hate to see her tired and when she was having the chemo bring sick etc, and I struggle a lot with the uncertainty.. When will everything happen. How can I plan for anything. When will she be home, how will she be when she's home, how will she actually cope when she has to be admitted again folllwing the next cycle, will she emotionally break down at any point or will she continue to be so incredibly strong.  I do struggle when I come home, at nights, or trying to socialise at all with anyone. I feel out of control. I am off work and don't know if, when or whether I could manage back at work. I wonder whether if she is managing so well should I still be so worried and feel bad for doing so as though I should jsut shake it off. Or is this just a matter of getting head down for 6 months and getting on with it and it's likely all will then be OK? I have 2 daughters, 13 and 15, and am worried about them. I feel emotionally drained and feel at the moment I'm holding everything both emotionally and physically.

She is doing exceptionally well. She is cycling on the bike every day. She is only a couple of days from home and her consultant is great and really happy with progress. And then I think but still we are going to have likely another 3 cycles and still a possibility of SCT. 

Its hard. Your story is very reassuring and I'm delighted to hear your wife is still in remission and doing well. Can I ask after she completed treatments how long before she was back to near normal physical wise or is still did very much working up there. 

Sorry long post and probably lots of questions hidden in there!

Rob 

Dear , I have a different kind of leukemia to your wife but share many of the experiences she is  going through. I think it’s sometimes just as hard for the supporters of the patients to cope as we are very focused on getting through our treatments while you are left to do all the worrying on the sidelines, so your feelings are not surprising to me, so don’t hesitate to get support for yourself here in the forum at your local maggies centre or from your gp, your physical and mental well being will be essential to your wife’s recovery. As for all the uncertainty, it goes with the territory in blood cancer as definitive answers about the long term are hard to come by, it’s something you have to come to terms with, all you have is statistical data, but no one is a statistic. We can’t afford to be pessimistic so it’s actually easier to live in hope and just keep moving forward until we reach an obstacle we can’t get round and then the doctors will hopefully find a way to move the obstruction out of the way. I wish you both the very best for the future.

Hi Rob

Firstly please dont apologies for the long post and questions. It is quite natural and expected under the circumstances.

I will try and get through your concerns the best I can given my experience.

Yes, my wife was very strong and coped well initially following diagnosis, it is as others have said often harder for the partner to deal with as the is soo much uncertainty. You must keep strong and believe things will work out ok for her and yourself and the children. 

We live alone and that made it even more difficult for me, however this forum saved me going mad to be honest. The help and support on here is second to none

I could not plan a thing, just every day to the hospital for 4 to 6 hours a time. Nothing else mattered at the time. You have your daughters which is great for support and something to keep you occupied, keep busy with them and support each other.

I used to break down very often over thinking about the future weeks, months etc. This again is natural, however I tried best i could o keep it together when I was visiting every day. I did stop work following her diagnosis and did not return. This is where working for the NHS is very good with their sickness policies.

I guess from the ages of your daughters, your wife is fairly young, this is an advantage, my wife was 64 when diagnosed, which is on the borderline as some reports suggest as possibly more difficult to treat.

Your wifes treatment will obviously depend on the type of AML she has. Have you been informed as yet of the molecular markers. These are often NPM1 and or FLT, These are very important to decide treatment if either are positive, which I guess if the condition your wife has as my wife one or both will.

When your wife gets home, make no mistake she will be tired, she may not think so herself but she will. I guess she would have bee neutropeanic whilst having treatment, she will not be allowed home u tilthey have started to rise. Ensure your home is very clean, dont go mad and make it like an operating theatre, but highlight door handles, light switches, toilets and bathrooms as her immune system will be compromised. Just be a little careful. Dont eat take a ways unless from a known good supplier you have used before. Dont let visitors come round with cold or any symptoms of infection or virus, that's a very important point.

Try and get her to walk around the house or garden a little at a time, it's very easy to overdo it and she will get tired quickly if so.

Yes, there will be more treatment I guess, my wife had 3 sessions of between 5 and 7 weeks at a time, then she had the Flag Ida treatment at the end, this luckily put her into full remission with no evidence of disease which is where we are today, however before the final treatment we were told that an SCT would be required and her sister was a good match. It was such a massive relief to find her results post the final treatment to have done the job and therefore no SCT was required 

Rob, you are on a roller coaster of a journey but you just have to hold on tight and dont close your eyes, the ride is full of ups and downs, twists and turns, you will get through it. 

I always remember what my late sister told me years ago when she was very sick Rob.

NEVER BE AFRAID TO SHOW YOUR EMOTIONS.

You  will break down, do not be ashamed of that, even when with family and freinds, they will pick you up and support you. Your a human being not a robot.

ROB. I could write so much more and am happy to do so, if you would like to write to me or even speak to directly I will leave my e mail address below and if you wanted to 

Hi Rob

Sorry forgot to answer your last question.

My wife is still having aches and pains in some joints, mainly legs and hips. This is quite normal due to the amount of chem given. This can last some time I'm informed by the specialists. Just take it day by day and seek advice from her team on excersise and any pain relief that would be appropriate. It is very important to ensure whatever medication your wife is given by her GP, that he or she is fully aware of her condition as most are not, that anything she is prescribed does not compromise her condition.

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