Aml cancer

My wife has just been given the cancer free news following 6 months of intensive chemo. The treatment itself is arduous with every side effect that they warn off actually happening. She was given a 30% chance of survival at beginning of treatment which was improved on after every chemo cycle .

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear about your dad.

This is a hard time for your dad, you and all of the family but talking with people who are on the same journey will help a lot.

Its great that your first Community contact is with  as it is good talking with people who are on the same journey. My blood cancer was rather different and over my 20 years living and being treated for my Lymphoma I have seen so many developments to the point that I started being classed as Incurable to now, 20 years on being in remission - so there is always hope.

You may like to follow this link to our Acute myeloid leukaemia forum where you will connect with people who understand the journey you and your dad is on. You can ask the folks questions about treatments, what to expect and how to help him during this time. The folks in the group come and go so put up a post and those active on the site will get back to you.

Follow the link and join the group. To do this hit the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts. If in the future you don’t want to receive notifications just switch off the email notifications tab.

You can look through all the discussions in the forum by hitting the ‘Discussions’ tab. But the BEST WAY to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first post. If you want to reply to a post go to the bottom of the post and hit the ‘Reply’ tab in the blue box.

We also have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum and Friends and Family Forum

You may find our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.

It is worth putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.

To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.

We are around to help as best as we can.

EDIT - Just seen you have found the AML Group, well done.

That's great for your wife that she has beat this..my dad is 64 he is getting the aggressive treatment. I just hope that it does work and a miracle happens that it just goes away with the treatment and not to be just kept at bay. He having a hard few days now with infections and that. Just want to lift his spirits up he hates being in that room 

We hope and wish your dad a full recovery.

The confined to a clean room during treatment not being able to see grandchildren the worst part.

Be strong and be there.

Thank you 

Hi Tulia

Like your Dad I'm 64.  I was diagnosed with AML in November 2016, completely out of the blue.  It was a huge shock!!  I was accepted on the AML19 drugs trial, and had four rounds of FlagIDA chemo.   Was discharged late April 2017.  I'm now at home getting on with my life.  It is possible to beat AML.  The treatment is long and at times brutal, but your Dad just needs to take it one day at a time, and try and keep a positive mindset (Easier said than done I know if he's having a shite day!!). I'm still monitored with regular biopsies, now once a quarter.  Had number 16 last week, and waiting for results.  Most days I'll walk four or five miles in the fresh air.  Having been stuck in isolation for so long, I relish the fresh air!!

Hang on in there!!

Best wishes

Rog

Wow that's great so it is. It's just a big downer right now for him and my mam the prognosis he given is so bad like even if treatment successful he will only have 3 years but as I do say you never know he can beat this he is strong and very healthy the worst part for him is just in that room 24/7 but positivity is the key. Thank you very much for replying to me..

Yes, it is an emotional roller coaster , and he'll have good and bad days, but each day he ticks off in isolation is one less to endure.  What worked for me is always to look forward, and think about getting home.  Temperatures, based, sepsis, mouth ulcers..  Yes, it's nasty at the time, but he'll get through it.  As a family just give him lots of love and support, and remember to tell him how  much you all love him.  Take time for yourself as well.  Watching on can often be worse than being the patient!!  

id ignore the three year prognosis, it's not helpful, and at the end of the day everyone of us is different.  No one knows how long anyone of us have left, so let's just enjoy the present.  I was close to popping my clogs when I was diagnosed, but I'm still here!!

Best wishes

Rog

Thank you so much that really has made me more positive and to tell my dad this to will help i would say so much. We will know in a few weeks if the 1st round is positive there a 30% chance it will work but am sure it will 

Hi , you are getting lots of positive encouragement from Rog and Almac.

I see you have found the Acute myeloid leukaemia Forum........ you will find even more in this part of the Community.

As I said, I had a different blood cancer journey. Back in December 2013 I was told if treatment did not work I had 30 months on the clock...... I am now 35 months past that alarm bell date and I am in remission with No Disease Evident (NED)

((Hugs))