You’re young(er) than average diagnosis age, single, full time working in a job you enjoy with (usually) many years of working ahead of you, are very physically active and sporty and geographically distanced from family. And health is deteriorating as this thing continues to progress . No other health issues, than this one to navigate.
I read things that read as if it is advice given to retired people. I see people posting that are identifying as caregivers for their partners and wanting to be supportive which is nice.
Hands up.. how many younger single people are dealing with this mind field? Would love to hear from you.
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wellbeingwarrior
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The only thing I couldn't find is if your CLL doctor has tested you for prognostic markers aka cytogenetics. using a FISH test ( Fluorescence In Situ Hybridization (FISH). This test studies chromosomes in tissue using DNA probes tagged with molecules that emit light of different colors. The DNA probes then bind to specific genes or areas in the chromosomes within the cells and light up when viewed under a microscope with a special light.
In the UK and some European countries these tests are not performed until the patient is nearing treatment, so perhaps NZ does the same. If the results of those two tests indicate you are 13q and Mutated, then you might be a good candidate for FCR chemotherapy that could give you 10 or more years remission.
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We have had several under 40 members and even some mothers to be here.
Some of the members that I recall in the under 40 category are below. By clicking on the links to their profiles you can read their postings and replies. Since they are getting a notice to this discussion, they may want to provide some answers to your posted question.
Thanks Len, yes two years plus into the journey now. I had a really good first two years after putting several lifestyle moderations in place and I believe my high fitness levels have slowed down progression. Now that I'm suffering more with frequent ill health and fatigue it feels like there is nothing further I can do, and feels more daunting than at the beginning.
No further testing has been done. In NZ, currently the Leukemia and Blood Cancer foundation is lobbying to correct that and have the IGHV mutation test available. They run patient forums occasionally which are educational, and the Specialists understand how a personalized approach to treatment is required now, however we don't have all the tools for it. I'm not sure about FISH. Previous discussions held with my Hematologist have indicated a bone marrow biopsy would be taken if/when treatment was to commence.
We spoke in March about where things were at, and the treatment options given were FCR or Ibrutinib (not currently funded here) and we are scheduled to discuss again in September to see where I'm at and how I've been. The other note made was around potential clinical trials for newer treatments that will open up in the future.
I had an incredibly bad reaction to my last Covid jab (diagnosed as an immune system over-reaction to the vaccine and was really sick - might as well have had Covid!) and this is becoming more frequent.. getting incredibly sick from something that I should deal with.
Thank you for sharing that additional information. I find very useful resources of information here and no doubt will come back to tap into the wisdom of the CLL crowd should I have decisions to make. I created my life around my lifestyle goals as a very healthy person so I now also find myself in a difficult position that results in a lot of isolation for a less healthy person, but I'm doing some planning to try and help with that. I guess what I'm trying to say is that it feels like much more of a burden than it did before and a hard one to navigate alone as while people are empathetic, they don't really understand what being so tired is like and I'm finding myself increasingly isolated through lack of doing things and was looking to see what other younger single people could relate to this scenario.
Hi there, well, I'm not single but I am 41 and was diagnosed when I was 38 and pregnant with our third baby. I work as a primary school teacher and I love my job. I do get where you are coming from - my family and my husband's family live abroad, we have three small kids and we both have to work. It is not easy...but I also think that it isn't easy regardless your age and work status. When you are older, you tend to have more health issues and things might be a bit more complicated. It sucks having CLL at any age ...but it's very challenging when you are young, there is no question about that. I don't want to die when my kids are still kids but who knows, nothing is granted for anyone, regardless...
Hope you have good friends around you and that even though your family is far that you are close ❤
Thanks Poodle for taking the time to share. Yes, that would have been a handful to deal with at the time of finding out. I'm glad you're managing well with work etc. Cheers
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Any members of tribe CLLers, here?
Third Vaccine Now Available for Cllers in Active Treatment in Ontario 
CLL in 55 year olds and younger...Mayo Clinic Study
Late breaking CLL abstract at ASH 2018 (FCR vs IR for untreated younger patients)
what provoked my CLL?
