HL Survivor 8-Year Life Update (and my experience of LDN for chronic fatigue)
Vložit
- čas přidán 7. 09. 2024
- Share your experiences in the comments below and I will do my best to respond.
Studies I mentioned:
Review of low dose naltrexone (LDN) for many illnesses including chronic fatigue: www.ncbi.nlm.n...
Fatigue level changes with time in long-term Hodgkin and non-Hodgkin lymphoma survivors: a joint EORTC-LYSA cross-sectional study hqlo.biomedcen...
Persisting fatigue in Hodgkin lymphoma survivors: a systematic review
link.springer....
Meta-analysis of genome-wide association studies reveals genetic overlap between Hodgkin lymphoma and multiple sclerosis
academic.oup.c...
I came from that 8yr old video and I'm really glad you're fine :)
Hello, you look good..glad to see you back
Thank you, Diane. I hope you've been well.
@isendathinks7588 so far so good, good to see you back
I’m glad you are still here! I can recall watching your videos when you were battling with cancer. I’m sorry to hear about your partner!
May the universe heal and give a speedy recovery 💕
So happy for this update!
Im so sorry to hear about your partners diagnosis though I’m glad to see that you yourself are looking incredibly healthy. Wishing you both improvements in your health 🙏
Hi Isenda, it's nice to see you back. Please keep updating us. Your videos are genuine, informative and educational and you yourself is an inspirational young woman. I honestly think so many youtubers out there with videos about their illnesses are just attention seekers but you are different. I feel that you are genuinely trying to share your journey with us and you are not dramatising anything. I'm in my early thirties, recently lost my mum to Diffuse large B cell lymphoma. I myself suffer from chronic anxiety and health anxiety and have chronic fatique symptoms as well (although very mild compared to a lot of ppl). I can relate a lot to what u've mentioned. I wish you all the best. I'm not sure if you've thought about counselling other young people with cancer given your lived experience. I do think you would be an amazing counsellor/psychologist/mentor.
Thanks for your lovely comment. So sweet and kind. It makes me want to keep updating you because it feels like my words aren't getting lost in the ether of the internet. I'm so sorry to hear you lost your mum to Diffuse large b cell lymphoma - I know some people lose their mums at younger ages but early 30s is still too young to lose your mum (assuming she was a good mum :) ). I'm both glad and sorry you relate to a lot of what I'm saying. It's so hard, isn't it? Chronic fatigue and anxiety is really hard to live with... especially when we have legitimate reasons for being anxious about our health and those around us. My specialties in psychology are trauma (like PTSD and CPTSD), personality disorders (BPD and those affected by narcissistic people), and people with suicidal ideation/self-harm struggles. I hope to one day be able to provide more direct care to young people with cancer but I honestly find it too triggering and I became terrified of relapse myself... :( I feel terrible for it but it is how my body responds. I just hope my videos help. However, my high tolerance for stress/complex issues/grief means I'm really good in my current specialties. :)
Thank you for the update. I'm so sorry you are still dealing with fatigue. I hope the new treatment is helpful. I was diagnosed with Hodgkin's lymphoma a little over a year ago, your videos were some of the first that I watched about it and were extremely helpful. Surprisingly my father was diagnosed with Non-Hodgkin's lymphoma back in 2021. I'm so sorry to hear about your boyfriend's diagnosis. The coincidences are just unbelievable. Again, I wish you luck with your new treatment and more energy.
Thanks for your lovely comment. The coincidence is truly unbelievable! The odds must be astronomically low. :( But life can be so cruel and random and unfair. I see it in many of my clients who have had so many terrible cards dealt. I'm so glad my videos were helpful to you - do you struggle with fatigue afterwards or are you feeling like your normal self?
My energy levels are similar to what they were before. I think because I only did four cycles of chemo. I was stage 2. I don't feel as strong when I work out. It seems hard to rebuild my muscle mass. I did have extreme fatigue from fibroids a few years ago so I know what you mean. I felt like I was 100 years old and ran a marathon a day. Surgery fixed that but they are coming back.
It's good you are pro-active and get checked out when you find something that worries you.
I really appreciate this video. Your videos are what helped me get through my experience with HG. Thank you so much and I wish your partner all the best. I'm curious to know have you ever tried for a baby (sorry if this is an inappropriate question to ask)? We're the same age and I always think about conceiving after abvd chemo. Defs don't answer if you don't want to.
Hey there. Thanks for commenting. I haven't ever tried for a baby but was about to before my partner got diagnosed. I'm thinking of trying non hormonal fertility treatment first (IUI) and then IVF. I wish we had the chance to try naturally first because I've always been curious about the impact of ABVD on my reproduction. My AMH number is really good (it has something to do with fertility, apparently I should go into menopause well into my 50s) but a lot of fertility issues are hard to identify beyond a few obvious issues/markers. I don't have endo or PCOS and my cycles are regular and normal, so in theory, my reproductive system should be okay. The doctors told me at the start of treatment that ABVD doesn't have a huge impact on reproduction but to try for a baby younger rather than older because the treatment could exacerbate underlying fertility problems that were already there. Not sure of that makes sense? Did your team ever talk about fertility after treatment? Thanks for your lovely comment - it's only because of these that I even make update videos. 😊
Good to see you again and sorry to hear about your partner's diagnosis. Was it just a simple regular blood test that found his cancer?
Yes it was and then further follow up tests. Thanks for your comment!
I can suggest trying earthing. It's helped me normalize my sleep.
The other thing that always makes me tired is lack of D vitamin, which is easy to get in Sweden.
Sorry about your partner.
Thanks for your comment, Adam. I have been more diligent about getting outside more for vitamin D. We have a lot of sun in Australia but I avoid it a lot because it can trigger migraines (and my work is inside). What's earthing?
Earthing is to connect the body to the ground of a radiator or power outlet. I guess it normalizes the charges inside the body. I just know that it works. For me. And I know for some others it doesn’t work.
Hey Isenda , do u get radiation therapy treatment in stage 4 ?
I didn't get radiation therapy - just 6 months of chemotherapy.
Hi isenda my son has Hodgkin lymphoma he is coughing to much is coughing curable in Hodgkin lymphoma?
Waiting to your response
Hi Waheed. I'm not sure - maybe he has had lung tissue damage from the cancer and it couldn't be completely repaired? I don't have chronic coughing. My coughing went away when the cancer was cured. I hope you and your son are well.