30 Year Old AML

Hi Deyoung50

I would definitely like to read your blog.  My dad (72 years old) has just been diagnosed with AML this week and it has all been such a shock as it was the last thing we expected.  He is in intensive care and half way through his first round of chemo.  I am very scared about his journey and what will happen next and I think your blog would help me understand a little bit more of what he is feeling too as he is very down today and doesn't want to see anybody.  Is this how you felt at times?  I think your can do attitude is absolutely amazing and I hope my dad can muster a bit of that very soon.

Sonialou

I definitely had days when I didn’t want to see anyone. There were days when my family would visit and I wouldn’t even speak due to being exhausted. Hospitals are not the most restful places unfortunately! The bad days often outweigh the good days at times but that’s just the way it is. Even in my darkest days I smiled for every visitor no matter how much it hurt. 

The treatment pushes your body to the limits. It challenges you physically and mentally but there are better days ahead. You just have to dig deeper than ever. 

https://tdysjourney.wordpress.com Is the link to my blog. You may have to scroll a little while to get to the first post. I really hope you can gain just anything from reading. I’d love it to inspire someone in anyway at all possible.

trust the doctors and nurses. They really are the most incredible people.

A second welcome to this corner of the Community, I see a great reply by Sonia who I only meet in the past few days.

As I don’t have AML but a rare NHL, my treatment journey will be rather diffrent but at the same time there are a lot of cross overs in how we get through this.

A ‘can do’ attitude is a must as the opposite is rather pointless. 

I am sure that some of the other AML folks will pick up on your post and we do have all ages represented. 

My journey is 20 years long, I do hope that your one is much shorter.

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.

Hi, 

Thank you so much for sharing your journey, i would be really interested in reading your blog. My husband is 37 and received his diagnosis three weeks ago. Assuming the had flu for two weeks he was rushed to our hospital after collapsing. Within a matter of hours we were told he had pneumonia, sepsis and they suspected Leukemia

 We transferred immediately to the city hospital were they could not begin treatment as he was so poorly. In now for 19 days and he has completed 10 days ( not consecutively) of chemo at a reduced dose. He had a week in ITU, but is back on the ward still poorly and battling infections. Because of the rollercoaster of his physical condition they have just been battling his combination of issues and we had not had tbe talk with the consultant about  the leukemia, we just knew it was AML. Yesterday we spoke to the registrar who told us that he was very poorly and they would stop chemo for a while as course had ended, but that they needed to concentrate on fighting infections. She also mentioned that his blast cells were at 80% when he was admitted . That has sent me into a tailspin as i had hoped they had caught the diagnosis early. We have a family and are currently 2 hours away from home with school term looming. I would be interested in your journey and how you remain positive, as i need to stay strong and positive for my husband.

thank you

https://tdysjourney.wordpress.com - that’s the link to my blog. I really hope it can help. 

My first bit of advice would be not to compare your husbands story to anyone else. Every situation is so different. You will hit similar hurdles of course but everyone’s body reacts differently too. 

Infections slowly became the norm to me, not because it was normal but because I knew the chances of me avoiding them were pretty much impossible. I was selfish and decided to refuse all visitors except close family and friends. It was hard telling mates not to visit but in the long run it helped, who knew what they were carrying in and out of hospital. 

Your husband will already be on the rollercoaster but it’s so important you remain on the rollercoaster with him, my partner was incredible, the strength she found in my darkest days was incredible, she kept my spirits up. My 6 month old little girl was also my inspiration. I dug so deep for her, Sepsis really tested me and my courage that’s for sure!

People forget about the loves ones having to sit back and watch their loved ones lying in that bed suffering, you guys are just as important in this remember that. 

Trust the staff, ask questions but always begin and end the day with a smile regardless of how hard that day has been. Certain days I would be in so much pain with my mouth ulcers etc smiling was a struggle but knew I had to smile to greet my family and I needed them to know I was ok. 

I hope this garbled reply helps in some way. I really do. 

Hi Jonessm1

my husband (also 37) was diagnosed with AML (and MDS) back in December so I know the rollercoaster you are on. Happy to chat if you want to 

Hi Jonessm1

I am so sorry to hear about your husband.  Here is definitely the place to find support.  It has been wonderful for me.

I was diagnosed two years ago with 95% blasts; sepsis; and 3, separate DVTs in my leg. No other symptoms, except I had been getting increasingly more tired, but put it down to a lot going on at the time. Two weeks before diagnosis I was doing an advanced ballet class and then my leg swelled up with what I thought was probably a pulled muscle.  I was 59 then; 61 now.

Two years, two rounds of chemo on the AML19 trial and a stem cell transplant later, I am not only still here, but perfectly well in every sense and pretty much 'back to normal', other than still waiting for my immune system to grow back.  Don't know if my creaky bones would cope with a ballet class now though!  

The treatment is long and tough, but don't give up hope. I am the living proof that rescues can and do happen, even with very advanced disease at diagnosis.   

With love and the very best wishes for you both

xx