Cll diagnosis for my dad

[Suskime]

Hi my dad who is going to be 78 this November was told yesterday that he has cll stage 4 - so I believe that means it’s in his bone marrow ( he had a biopsy to confirm that) his lymph nodes are enlarged ( he also had a biopsy on one in his neck which confirmed non Hodgkin low grade lymphoma ) and the scan showed that the lymphoma is all over about 1.5 cm so quite large. I am so worried as he is older and don’t know prognosis. He also suffers from hypothyroid although consultant said that was a separate issue. He is on watch and wait as he feels well in himself so his first blood appointment mid Aug. It’s hard to be positive I’m so worried all the time as everything I read is for people much younger - just so scared

[AussieNeil Administrator]

Hi Suskime,

While 1.5cm might sound large, the trigger for starting treatment is 10cm in the largest direction. The hardest thing now will be patiently waiting to see how slowly his condition changes. Many of us have found that we had CLL for some time before it was finally diagnosed. I was diagnosed over 9 years ago with stage IV CLL, (swollen nodes and spleen, severe neutropenia and 54% bone marrow involvement). After my diagnosis, my GP found a blood test taken 2 1/2 years earlier that indicated I had CLL then. I'm still in watch and wait.

Your dad may never need treatment - about 30% of us don't, particularly if we are diagnosed later in life.

Neil

[Suskime in reply to AussieNeil]

Hi Neil thank you so much for your reply and sharing your story which is so reassuring. I think because he is elderly everything points to poor prognosis and diminishing survival chances. The consultant said that it is more than likely he will need treatment but could not say when that would be - which of course I understand. When you hear cancer it is so terrifying and I am trying to educate myself so I can be there for him and my mom. I thank you again for reaching out to me I am so grateful

[AussieNeil Administrator in reply to Suskime]

Your reaction is quite typical. We hear the word cancer, but not Chronic. Take some time to read through the pinned posts to get an understanding of what your dad is feeling right now so you can be there for your parents. It can take some time to adjust to living with CLL and the uncertainty is hard to live with, but with CLL we do have time to adjust.

[Suskime in reply to AussieNeil]

Thank you I will

[CLLCalifornia-USA]

Hi Suskime,

I was diagnosed stage IV CLL a little over 12 years ago and the doctor gave me 6 months to live. I’ve been on Ibrutinib since January 2017 and I feel wonderful. Everyone is different, but there really is life after a CLL diagnosis. Enjoy every day. Sally

[Suskime in reply to CLLCalifornia-USA]

Hi Sally thank you for your words they mean a lot. I am trying to learn more about CLL and so happy to have found this group and support makes me feel more able to cope and help my dad. Your story is gives me hope for him thank you

[CLLCalifornia-USA in reply to Suskime]

There are so many new drugs out there if your dad should need treatment. Make sure he sees a CLL specialist. It will make a huge difference. Best of luck. Sally

[Suskime in reply to CLLCalifornia-USA]

Thanks I was just looking at that. He is being seen by a haematologist so do you think I should ask to be referred to a cll specialist?

[baq724 in reply to Suskime]

The best case scenario would be to have a specialist and a local hematologist. It just depends on how far you are from a cll specialist. I see a hematologist in KC and a specialist at MDA in Houston. There are specialists closer, but I chose to go where they are on the cutting edge of new treatments.

If any problems arise I can go see my local doc and she can confer with specialist. If I ever need treatment, my specialist will be guiding that.

[Suskime in reply to baq724]

Thanks baq724 I have found a specialist not too far in London ( my dad is just outside London ) he is on watch and wait and has his first blood tests Aug 15th would you say wait until treatment is needed to see specialist or should I try to get him an appt now ?

[baq724 in reply to Suskime]

Well, it depends on the patient. I am the type that wants to plan ahead. I want as many answers as I can have and have a team in place in case I need them. The trouble is that in Europe I have learned that many of the prognostic tests aren’t done until treatment....FISH and ighv mutational status to be specific.

Since your father is stage 4 and might be closer to treatment, if it was my father...I’d get a specialist now. Your specialist can guide you better with the new novel agents.

It’s a different ballgame here in the US. I had all the tests done and found out as much as I could. I have two great markers, one moderate risk and a variant of unknown origin that could be high risk or maybe not. My first abnormal blood test was 2012 and my ALC is still only 21k. So it depends on how much you want to know.

Sorry for the rambling....my answer is if you have access to a specialist, do it. Chances are with the new drugs, you father will have the best chance at CLL being controlled and his quality of life won’t be affected too much.

[Suskime in reply to baq724]

Thank you I appreciate all your help I also like to have as much info as possible I didn’t realise that he may undergo more tests for treatment this is all so new so I am a bit ignorant about it all but trying to learn as much as possible to know what his choices are. I think I will call the specialist tomorrow and see if I can get him an appointment as you say having everything in place and being prepared is good - thanks again

[CLLCalifornia-USA in reply to Suskime]

Specialists are on the cutting edge of what’s going on with CLL. They are familiar with not only the tests that should be done, but what treatment that will work for each individual. So yes, I think Dad needs a second opinion. Some hematologists will work hand in hand with a CLL Specialist. Best of luck, Sally

[MsLockYourPosts Passed Volunteer]

cllsociety.org has a lot of good information - everything from the basics to cutting edge advances, and a list of links to other reliable CLL specific resources. This site has many members in the U.K. who are familiar with the system and resources there.

There are a lot of younger patients on the internet sites simply because they grew up in the internet world. The average age at diagnosis is @70, so your father is not unusual because of his age.

Have your father start a file with labs and other test results. The patterns over time are more important than individual results in most cases. I also find that recording appointments is very helpful, as, especially when new, you are essentially trying to process a foreign language while stressed. Being able to listen to things again later is very helpful. It also allows a patient to share exactly what was said with caregivers who can't be at an appointment - much easier than trying to "translate" what was said for loved ones.

If he has the option of seeing a specialist your father will already be established if he needs one in the future. Don't let the stage lV throw you. Staging for CLL is completely different than staging for solid tumors.

[Suskime in reply to MsLockYourPosts]

Thank you for your help and reassurance. Recording the appointment is a great idea and keeping track of results too - thanks again I appreciate all your advice and help