Update on my AML.: This an update on my AML... - Leukaemia CARE

Leukaemia CARE
860 members478 posts

Update on my AML.

snoopy101
snoopy101

This an update on my AML. Recently had my fourth bone marrow biopsy and good results - still in remission.

Had another maintenance round of azacitidine, followed by another blood test to check if still all good. Saw my haematologist yesterday here in Jaen, Spain and he said how pleased he was with my results. Except for my platelets (down), bloods are near to normal as they can be.

I am now looking forward to celebrating my 75th birthday in December and hopefully stay stable for sometime to come.

As he says, the main thing is one's attitude and stay away from infections, keep wearing my mask when out and about and keep healthy.

12 Replies
oldestnewest
2003UK
2003UKChampion

Hi Snoopy, I am so pleased that your results are positive. Yes, I think you should celebrate your 75th birthday in absolute style and do just what you wish to do. Yes, winter does bring more people getting together and more germs, I also take it you have flu jabs in Spain. Please let us know how you celebrate in December, enjoy and take care.

Brilliant news. So pleased for you. Excuse my ignorance but how was your AML treated. My son has ALL.

Best wishes

Hayley

snoopy101
snoopy101
in reply to Cyprusfan

Hi

First a bit of history. I am now nearly 75 and was 73 when first diagnosed. My wife and I were on holiday in 2017, staying with my mother-in-law in Devon. I was in touch with the local medical surgery and the doctor said they had not conducted any renal blood tests. Bloods don and 2 days collected the results, with a message to see a haematologist when back home here in Spain. This was end of August 2017.

After going through a variety of blood tests and a biopsy, I saw the consultant in early January 2018 and was told the news about having cancer and AML.

Started treatment that day with Azacitidine over 7 days, but after this first course, I picked up a serious infection and was in isolation on my own for 8 days, receiving a variety of medications and treatment, including 2 blood transfusions - my British born blood is now Spanish - lol.

The treatment of Azacitidine has carried on ever since, including about 10 months taking Lanvis (Thioguanine) chemo tablets.

My fourth bone marrow biopsy was about 4 weeks ago and continue to stay in remission. Earlier this week, did another blood test and saw my doctor again, with the results being, except for my platelets being down, my bloods are virtually normal. I now have longer breaks between treatment, as it it is now classified as maintenance treatment.

For someone who was not expected to survive, I am testament to having a good attitude and being positive. I have to wear a face mask when out and about as a prevention against infections - eat healthily - I can drive locally - and to use common sense. My wife is a nurse, which helps as well.

Cyprusfan
Cyprusfan
in reply to snoopy101

Hi

That is so encouraging for me to here. Our son is 25. Graduated this July and then only 4 weeks later got diagnosed out of the blue. Attended A & E with bad back flu like symptoms..pain on breathing in. And we are where we are. He is now on phase2 of treatment which will eventually lead to bone marrow transplant. He is in remission from what they can see of top cells but now treatment needs to go further in.

Thank you for sharing your story about this awful disease. It always seems to happen to others ...I guess we now are those others.

All the best for your future

Hayley x

Jm954
Jm954
in reply to Cyprusfan

Hayley, so pleased to hear the good news about your son. I hope you have a good Christmas.

Jackie x

Cyprusfan
Cyprusfan
in reply to Jm954

Hi Jackie

Transplant is 12th December admission is 6th December . Going to be hard not all being together for Christmas eve/Christmas day. Dreading it.

Nicholas had a melt down yesterday evening really really emotional. I hugged him tight or cwtched as we say in Wales. He became my little 7 year old boy not the 25 year in front of me.

It was really upsetting as I can't take it away.

Hayley x

Jm954
Jm954
in reply to Cyprusfan

He's been through such a lot for a 25 year old and probably the reality of the situation with more to come with the transplant hit him. We would all be scared in that situation and want our Mom, luckily he has you. That hug must have been so comforting and priceless to him - no one else could do that for him.

Christmas is just another day and you can celebrate when he comes out of hospital.

I'll be thinking of you all, take care

Jackie

Cyprusfan
Cyprusfan
in reply to Jm954

Thank you so much for the kind words. Nicholas had his lung function test today and my husband dropped him and his girlfriend off to go to the Christmas markets it will do him good.

In the meantime I am confined to the house with a spaniel post OP wearing a bloody lamp shade...the dog not me.

Hayley

Jm954
Jm954
in reply to Cyprusfan

I've got a lovely picture in my mind from your description of the spaniel! :) :) :)

xx

Cyprusfan
Cyprusfan
in reply to Jm954

He had a OP last week and managed to get a stitch out, it got infected and we had to have it re done yesterday 😡

NicoleLeukaemiaCare
NicoleLeukaemiaCareAdministrator

Hi Snoopy, so glad you've updated us on your story. 75th is quite the milestone for anybody - let alone anybody who has experienced an acute leukaemia. We hope you celebrate in style :-)

Congratulations Snoopy. I have just been diagnosed with AML and was given a prognosis of one or two years. I am keeping a positove attitude. I am 80 next year.

I go singing 4 times a week so wearing a mask does not seem practical. It is good to know that you can get some remission. :-)

You may also like...