CLL and no treatment. What to expect?

[Oz13]

Hello everyone, my father was diagnosed with CLL 11 years ago. He decided not to have treatment and about 7 months ago he started to become extremely fatigued, he now can’t manage to get out of bed for more than a few minutes, he isn’t in any pain just exhausted and he has lost massive amounts of weight. Anyone out there that has not had treatment. I guess we are wondering if he is in his final stages and what to expect. Thank you 🙏🏻 And we are respecting is decision as frustrating as it is not to receive any medical intervention.

[Newdawn Administrator]

He may be severely anaemic Oz. I know he doesn’t want CLL treatment but if his fatigue could be addressed, I wonder if he’d accept some intervention. What a deeply painful experience for you to have to accept his decision. What are his reasons for refusing any medical help?

Newdawn

[Oz13 in reply to Newdawn]

Thank you for responding so fast that was really lovely 😊 he is a stubborn man that we all love but just doesn’t want medical treatment and I think he has a massive fear of dying in hospital. It just so distressing to know if he is dying or will he stay like this for a long time...he is still eating and is mentally very sharp but so weak and ill looking. My sister and I are a wreak not knowing how to support him, we take shifts looking after him...

[Newdawn Administrator in reply to Oz13]

It sounds as if he doesn’t have any medical monitoring at all? I’m wondering if there’s any doctor who is involved with him and could intervene. Difficult I know at the moment during Covid restrictions. There’s a good chance his red blood count and therefore haemoglobin could be very depleted hence his anaemia and severe fatigue. As our CLL progresses, the bone marrow becomes more infiltrated and impacts on our ability to function normally. Platelets drop which can make us at risk of bleeding and bruising more easily. The only way to deal with it holistically is CLL treatment and these days it doesn’t even have to involve in-patient hospitalisation. Perhaps he doesn’t really understand what is involved and is reacting purely out of fear and misunderstanding.

It’s hard to make suggestions because something tells me you and your sister have tried them all in your desperation. I’d be appealing to his concern for you if he continues like this and ask if he’ll at least have some blood tests. Hiding at home won’t make it go away but he may be hospital phobic or has seen this happen to someone else.

Newdawn

[Oz13 in reply to Newdawn]

Thank you again💕 this information is really helpful I wasn’t aware that he might be able to receive at home care. We will try again to appeal to him. His specialist diagnosed him 11 years ago after he ended up in hospital after a leach bite that wouldn’t heal. They told him they would watch and wait, he went for a follow up a few years after that and they said it hadn’t progressed and they would continue to watch and wait and that he should be careful of infections. He has been fit as a fiddle until 7 months ago... and yes the pandemic has made things much worse, especially in Australia with very long lockdowns. I want to respect his wishes and I guess I just have to work through my own frustrations about his choices. It’s been very nice to chat to someone like yourself, it’s a very isolating experience. Hope you are doing well on your journey with CLL

[AussieNeil Administrator in reply to Oz13]

How old is your father? Treatments have come a long way in Australia since he was diagnosed. He might qualify for a treatment that means he won't need to be admitted to hospital, but ironically, he may have let his CLL get to the point where he may now need hospital treatment to manage his presumed anaemia, if he agreed to treatment. Even 11 years ago, he would have only needed to attend as an outpatient once every 4 weeks for treatment infusions for 6 visits.

I'm terribly sorry to hear of the situation you and your sister are in. I was diagnosed in early 2009, so about the same time as your father. Back then in Australia, we had no effective treatments for CLL, That would have begun to change a few years after your father was diagnosed. In the last 5 to 10 years there has been a revolutionary change in CLL treatments, with Australia catching up with the best available treatments in the world in the last couple of years.

I finished treatment early this year and there's absolutely no trace of my CLL now. I became sufficiently anaemic early on in treatment to need a couple of blood transfusions but now my blood counts are the best they've been in over 15 years. My haemoglobin is higher than it was in 2006. I hope that you can convince your father to reconsider his decision. If he hasn't kept up with the changes in treatment, he has made his decision based on out of date information.

Neil

[Oz13 in reply to AussieNeil]

Dad is 69 this year, all of this information is really excellent and I will chat to him about it, and I feel the same as you that it’s crazy that he won’t even discuss treatment as it sounds so incredibly positive. It’s really wonderful to hear that your treatment is allowing you to live a great and normal life. Thank you again for your time and I will let you know how it goes. And I really appreciate your empathy about how hard it is for my sister and I, we feel so isolated and powerless....💕

[AussieNeil Administrator in reply to Oz13]

Your Dad is only a few years older than me. As neurodervish said, that he has gone for so long without treatment indicates he has the version of CLL that is unlikely to need treatment again.

Neil

[HopeME in reply to Oz13]

The irony is his long watch and wait period indicates that his CLL is likely indolent and can be managed and possibly cured or at least kicked well into the future with current CLL treatments. However, as Neil notes the longer one waits for treatment the more difficult it can be to get the disease into remission. Please, please, please tell him this isn’t a terminal disease if managed properly. I wish you and your sister all the best with your efforts.

Mark

[neurodervish]

Hi Oz13, This must be very difficult for you. In the 11 years since your father's diagnosis, there have been many medical breakthroughs for CLL. I would almost liken this to a diabetic refusing a lifesaving medication that would allow him to live a perfectly healthy life.

People used to equate cancer treatment with a painful march toward death. It's just not the case these days, especially with CLL.

I suspect that, if he made it 11 years without disease progression, he may not have one of the aggressive types of CLL. Many CLLers who have the best CLL diagnosis (13Q mutated type), often don't need treatment again after their initial treatment. The rest of us just get periodic treatment every few years (or daily pills) to keep it at bay and we live normal lives.

[Oz13 in reply to neurodervish]

Thank you for messaging and giving me more information to talk to my dad about. And it’s wonderful to hear that it really can be managed quite easily. And I think that might be his thinking that it’s a March to death and he would rather just go that way without painful medical intervention as his doctor said 11 years ago to him chemo is the only option really if it progresses and I know he was extremely against that after watching some of our family members die that way...I will take all of this information back to him and gentle try to ease his anxiety.

[Palmetto]

Please make him aware that chemo is no longer the treatment for CLL in older patients he is still relatively young I consider 69 young since I am 72 and there are fabulous monoclonal antibody treatments along with Ibrutinib and acalabrutinib. He needs to be aware that the horrible side effects from chemotherapy are in the past. It sounds like he thinks that chemotherapy would be a horrible treatment and make him feel worse when in actuality the new treatments give a greater sense of well-being

[LeoPa]

That sounds exactly like my father one month before he passed. He was severely anemic, sleeping all the time, his CRP level was in the hundreds, and he was so weak he could barely stand on his legs. He lost massive amounts of weight too. Got a few blood transfusions. The only upside was that he was in no pain. He did not have CLL though. I wonder if it was acute leukemia or something else that killed him because we did not order an autopsy which I regret now

[W00dfin]

I resisted treatment until sepsis (blood infection) put me in hospital. I can only repeat the other insightful posts. Your father is risking the very thing he fears without treatment. My heart goes out to you and your family.

[bennevisplace]

Difficult situation, my sympathies.

Would Dad agree to a blood draw at home? Tests might suffice for a diagnosis. Even if it's "just" down to CLL progression it may be possible to turn his health around without treating the underlying disease.

[DawnRedwood]

I didn't have treatment for years either - not because I didn't want it but because I had no insurance and wouldn't have been able to pay for it out of pocket (nobody can). After many years I was hardly able to walk and I was 65 so I did finally have health insurance through Medicare, I was taken to the hospital and my blood results were VERY bad, as bad a trauma patients, and I had pneumonia and fluid around my lungs. I had 10 blood transfusions, 2 IV antibiotics, had the fluid around my lungs drained 3 times, and after I came home I went to the oncologist and was prescribed Imbruvica. And after 3 months my blood work was good again!!! I did not have any side effects from Imbruvica, so please ask your Dad to try Imbruvica, 3 pills a day, and see if he feels better after a few months. It definitely would be worth a try for him to be able to get out of bed again. He probably needs hospitalization first........I'm not a medical person/doctor/nurse, etc. but I do know from experience. He might be VERY GLAD he went for help.

[Hidden in reply to DawnRedwood]

Hello DawnRedwood, my dad 69 years from India was diagnosed to have CLL last year doctor asked him to wait and watch for few months untill last month when he showed up few blast cells traces (4%) in his blood and few atypical and smudge cells . His platelets and hameglobin is normal with WBC 18000 and lymphocytes 68% . 4-5 enlarged retroperitinal lymph nodes showed up in the ultrasound scan report.Doctor have suggested for a targetted therapy wth ibrutinib kind of oral pill which he need to take daily . at this point of time we are unable to afford the treatment in India as the drug need to be imported from outside and is quite expensive for us to bear the expenses without insurance. this is for everyone here in this forum if you guys can help me with a health insurance for him . or any source who can help me in treating my dad.

i have lost my mother 12 years back and he is the only parent to me and my younger brother .i am the only one in the family working to look after my father

[DawnRedwood in reply to Hidden]

Not sure how things work in India, but you may be able to receive help from the manufacturer of the Imbruvica drug. Your Dad's doctor should be able to help you with that and what other sources of help are available in India. Good luck to you and your Dad. Is there any govt. help available?????

[Hidden in reply to DawnRedwood]

thank you for the response DawnRedwood No govt. help available in India here . hence i am joining to all CLL and lymphoma society exploring everywhere if i could get help from anywhere .or if there is any society here in India who help CLL patients in affording targeted therapy

[DawnRedwood in reply to Hidden]

So sorry to hear that the govt. doesn't help people who have lower incomes get the medical help they need. You're doing the right thing by going everywhere you can online to see if someone knows of a program in India or help from a private agency. I pray you find help for your father.

[SofiaDeo]

Back when he was diagnosed, like me, I was told the only treatment options available then involved traditional chemotherapy. Now there are oral pills! And other support medications that can be given at home. 11 years ago most everything was done in the hospital, but no longer. Please show him all these responses, and see if he will look into treatment. Because things have indeed changed drastically since our diagnosis a decade ago.

[crazymazie]

I have never had treatment. i was diagnosed in 1998. Treatment has never been recommended. Did your father refuse recommended treatment?