Hi! I’m a 17-year-old recent Acute myeloid leukaemia (AML)-M4 patient (intermediate-risk, +8 karyotype, NRAS/KRAS G12D mutations), male, in China. A fever in late March led to discovering that I had and completed my first induction (“7+3”, though the 6th day of chemo I fevered a lot so I actually had a “6+3” plan) in Shanghai Ruijin Hospital in mid-April. There were some infections, but soon my counts have recovered well. I was discharged on 8th May and, in the five days out thus far, I am feeling great and having a considerable appetite and energy, I went to a park and dined at several low-traffic restaurants with my parents to avoid the risk of infection. Despite the fact that I can’t go to school to see my friends, go out freely and etc. No matter during the hospitalisation or staying home, I never felt too much pain and I even didn’t lose much hair after chemo. Though the thing made me worry about my study and the problem of if I can be cured in the future and finish my study, go to work, be a teacher, enjoy football matches…
I’m about to begin my first consolidation cycle in probably 20th May. I’d love any advice on managing daily life between treatments and emotional support. Has anyone here had a similar journey through Acute myeloid leukaemia (AML)-M4 consolidation? What tips helped you get through the weeks between chemo cycles?
Hello @Lapused welcome to our UK support forum.
Thanks for telling us that you are in China as rights, treatments, support etc. might be rather different than in this country.
Perhaps consider if you are classed as an adult or young person.
Perhaps ask your medical team about how you can socialise safely.
Perhaps discuss with your school how they can help you so you can can continue your studies and take your exams at some point.
Can your school help you with emotional support as I think that is something I underestimated, all those feelings and emotions of anger, worry, fear, losses, perceived and real and a big one for me was shock.
I hope others can share their experiences.
I am purposely not giving you answers or internet links as how it would be in the UK as I do not want to confuse you.
There might be hospital or on line support groups for people in a similar position to you.
I always write down my fears, questions and practicalities so I do not forget to ask them.
Perhaps discuss things with your parents as I expect they have had similar fears, thoughts and practicalities too.
Never lose your dreams.
The main thing is to be kind to yourself and really look after yourself and thanks for having the courage to post.
Let us know how you get on.
Thank you for the reply! I’ve already confirmed that I need to discontinue my high school study for like one year for the chemo treatments and possible transplant (I might have heard that in UK no matter in what circumstances there must be a transplant except for M3, but here they just suggest transplant as we are young, and not firstly suggest transplant if we have a good/intermediate mutation), and though I don’t spend the money, my parents do and, spent about 60k yuan, about 6250 pounds. And we are also working hard to secure funding from various medical insurance programs to alleviate the financial burden.
I will stick to this forum to update my info and keep telling people my good news. Though I know everyone is unique and may have very different reactions to being diagnosed, chemo and sudden life change. I hope that my strong physical condition and positive attitude can offer encouragement to others here on the forum.
Hello @Lapused
Thank you so much for your post & welcome to our forum.
We are so sorry to hear about your diagnosis of Acute myeloid leukaemia (AML), we can imagine that this was a difficult time for you and your family.
We are pleased to hear that you are feeling okay and have been able to go out with your parents.
It is understandable that you would like further emotional support and we hope others can comment on your post with their experience.
We do have some pages that may be helpful too. We have a page on mind and emotions Blood cancer: mind and emotions | Blood Cancer UK unfortunately as Erica mentioned a lot of the signposting for support websites/ organisations will be for the UK, but the hints and tips on these pages can apply no matter where you are.
We also have a page for young people with cancer which includes links to pages about emotions, study, social life and side effects Blood cancer and young adults | Blood Cancer UK.
I will also add in a couple more links of cancer stories that may be relevant/ helpful to read over:
