My dad has just been diagnosed with CLL, he is 51 years old and relatively healthy, his health/fitness has deteriorated over the past 12 months to where he is tired almost all the time. The doctor has suggested he doesn’t have any treatment yet and just watches and waits.
Does anyone have any advice on whether starting treatment earlier might be beneficial, and what are the actual benefits of watch and wait?
Thanks
Tom
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Tomaitch21
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You may get people on here as well as medical professionals giving you advice as if its gospel. The truth is everyone is individual and their bodies respond in different ways. Statistically, if a good doctor says watch and wait is better then, long term outcome wise, it probably is.
I am 47 and had the same debilitating fatigue along with a lot of other symptoms so they treated me. The treatment takes a hell of a toll on your body (or can) but has got rid of a lot of my symptoms. I desperately wanted a normal working life back but the symptom it hasnt helped with at all is the fatigue.
There are no easy answers I'm afraid and everything is a balance. The only tentative advice i would give is dont rush and dont be rushed.
I am 52 on w and w. My theory is do everything I can to stay healthy - in my case fasting, no processed foods and low gi (vegan too altho that might be less important) and exercise more thorough than I ever have. These actions do no harm and should make me healthier and make me feel better about it anyway as I'm doing something rather than being a victim. The reason is that every year there are major improvements - it was just FCR a while back. In last 6 months it's Venetoclax and obinutuzimab on the nhs, and now acalabrutinib., which are all big steps forward so as every treatment takes it out of you a bit, if you can wait for improvement it's good (altho I'm no doctor). It sounds counter- intuitive but maybe if he's tired he could start some exercise and cut back on processed food? Have the odd nap like Churchill did in the war? That's what healthy pple do to get more energy so no harm for us.
I have progressed 4 times and each time I was begging my doctor to start treatment due to the impact my fatigue had on my daily lifestyle.
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Here is a link to one of our Pinned Posts that talks about all the pros & cons of starting treatment. healthunlocked.com/cllsuppo...
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If you read down to the comments from Dr. Furman ( my doctor and the guy I begged to start my last 3 treatments) you will see these comments.
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SNIP Rick Furman Jul 4 #30005
It does sound like treatment is indicated at this time. One thing to keep in mind, is that watch and wait is meant to differentiate those who are not going to need treatment for a long time from those who will need it shortly. Once CLL is active, there is no benefit to delaying therapy. Along those lines, watch and wait was a strategy developed when we only had chlorambucil and prednisone. Ineffective therapy with an impact upon bone marrow function. Now that we have all of these new agents, the downsides to starting therapy, in terms of marrow damage, are not there.
Rick Furman
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Re: Significant Fatigue Triggering Treatment
From: Rick Furman
Date: Sun, 05 Jul 2020 16:42:28 EDT
Active is defined by the traditional measures:
1.Hemoglobin < 11
2.Platelets < 100,000
3.Symptomatic LAD or splenomegaly
4.B symptoms
---- Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).
5.ALC doubling in less than six months
......
Rick Furman
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An opinion from Dr. Richard Furman Wed, 05 Sep 2018
"Nothing has changed as of yet for watch and wait patients. My belief is that for 75% of patients, watching and waiting, and then starting BTK inhibitor therapy will be sufficient to provide extremely long-term disease control of their CLL. For the other 25%, we have issues with transformation and BTK inhibitor resistance. These patients do need something different. One theory of mine is that earlier initiation of treatment might be beneficial. We are currently writing a trial to test this, but for now, we are still doing it the way we always have."
The side effects of treatment can be worse than the pre-treatment symptoms. Avoiding those side effects for as long as possible is the benefit of not starting early. That's how I understand it.
It's more than avoiding treatment side effects, it's also deferring the adverse event risks associated with treatment, deferring the hit on your immune system during and for a while after treatment, which can result in serious illnesses or worse, deferring how long you may have to live with some degree of permanent damage to your bone marrow and other organs, in particular your heart, liver, kidneys, nervous system (neuropathy), extending your buffer of time before your first remission ends and you need to look for your next treatment, plus providing more time for newer and better treatments to become approved as other responders have noted.
Even with those potential risks, fatigue can be so crippling in watch and wait that it is one of the triggers for starting treatment if the quality of life impact is severe enough.
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