So sorry to hear of your health issues Mono, I fully empathize with your health situation, having experienced a long 7 year battle with my late wife's CLL, it can be a colossal mental roller costa, I hope it all goes well for you, I have come to realize that as human beings we are walking miracles, and that is the complex nature of medical treatments and human biology, there is an online forum called 'Health Unlocked' which is a fountain of information, I am still a member even though my wife succumbed to her CLL, still post on there, it's a worldwide forum, and we found it very valuable, stay strong and best wishes to you and your family........
Great sentiments , some words I expect difficult for you to post. You're right though we as mere mortals sometimes never fully appreciate our lot , grab each day and live to the full . Good health to you and yours
Thank you Matt, yes each day is precious, especially when you have young children as Mono does, my boys are superb and very supportive, my oldest has set up home in Gowerton with his partner from Dartmouth, my youngest graduated last year from Swansea UNI, and lives with me, we get on so well our family bonds are very strong, which helps enormously in situations like this, if I could have swapped places with my beautiful wife, I would have done so in a heartbeat, here's wishing the very best outcome for Mono................
So sad to hear about your wife - even though I have been diagnosed CLL the prognosis has changed so much over the last 10 years it gives us hope. Even though we have the antivaxxers - the idea of using MRNA to cure or treat cancers such as CLLis going to provide better and longer lives in years to come.
The first line of treatment with CLL, is watch and wait, if you are lucky and your CLL progresses slowly then you have some chance at life when you do eventually have Cemo, my wife had BR treatment, which she responded to very well and was in remission for 7 years, but she didn't have a long wait and watch initial period, just 11 months, because her CLL was aggressive. When it came back, it came back very aggressive and at the wrong time, when Covid was kicking off and Cancer patients were being sacrificed for this covid pandemic, also the 'Biological' treatments are not the miracle cures they make out, for example, Ibrutinib has been hailed but what they don't tell you is it has a high death rate and is only suitable for 40% of CLL patients, many have to stop taking the drug, also they never tell you that these biological drugs also irreversibly alter your T cells? they also induce Sepsis and Pneumonia, it's a minefield to be honest, and I would recommend 'Health unlocked' ( https://healthunlocked.com/ ). Of course, most CLL patients die of Pneumonia because of the fact that this cancer attacks the immune system (White cells) so IVIG treatment is critical to staying infection-free, especially if you are starting to get serious infections, but NHS cost control will mean that you either don't get told about this treatment or it's only used once you have had your first hospitalization from Pneumonia, it's a protein anti-body blood fraction treatment derived from blood donations, it's effective for protecting and given regularly, but it depends on the quality of your consultant. All Leukemia is so complicated and while these new Biological treatments are the new treatments there are serious dangers for some, but also a general risk of Pneumonia that is mitigated by the fact that they have to prescribe strong antibiotics alongside the treatments. Antibiotics of course have their own negative impact on the CLL patient long term, especially the Kidney function, finally, I learned how helpless consultants were to deal with bad reactions to these new biological drugs, spent months watching them totally inept and unable to deal with the complexities of the human body, Doctors now absolutely nothing about the human body, we are still ignorant of the human body's complex systems, God it was only a few months ago that thy found a new gland in the neck, that had gone unnoticed for over 100 years?
Well I didn't manage to get out in time for Christmas, will still be in here for New Year. Feeling a lot better today but it's been a hellish time. Between enormous fatigue, temperature spikes, diarrhoea and constant nausea I am now covered head to toe in a rash as well. The rash is part of GvHD where the donor cells are attacking my own cells because they think they don't belong. Hair all fell out. Hardest thing I've ever had to go through in my life. All these things are expected though so the docs don't seem concerned too much. Hopefully - if nothing new occurs and things keep slowly improving I should be able to go home early part of next week.
Sounds like you have had a tough time but well done you for your resolve. We are all with you on your journey and let's hope the new year gets you on the road to a healthier life.
That really does sound like hell and puts others' problems into focus (mine included). I wish you all the very best going forward.
I am home. So happy to be out of that room. I’ve been isolated in that tiny room for 5 ½ weeks. I’m still wiped out, but it’s so much easier to deal with at home. I just couldn’t cope with any more hospital food.
Well done all the same , they say the cure is sometimes worse etc .At least now you can look forward to many more Christmases , keep us updated if you will of your progress
So glad you are home. My family and I wish you all the best. I'm sorry but I'm fukn useless with words,at times
Delighted to hear you are out of hospital. Wishing you all the best, what you have been through sounds horrendous.
Food has been amazing since I got home. Hospital food destroys you mentally. It gets to the point when they even mention food, I would start gagging. I couldn’t take much more of it - I could feel depression setting in.
How's it going ? Was the op a success without it rejecting, side effects etc eased ? Hope you get back on here regularly soon so we can carry on debating those subjects were world apart on so I can keep proving how wrong you are on most of it all ! Only kidding be lucky m8.
