fairly young (50) and just diagnosed

[Newchallnge]

Hello all, I was diagnosed a year ago and coming up for air! I am trying to get used to the new normal. I am comforted by the fact that there seems to be many options and that hopefully I will not need treatment for a number of years/I am 50 hrs old. I hope chemo will be surpassed by the new agents by the time I need treatment.

[gardening-girl]

Welcome to this wonderful community! You will discover that it is a treasure trove of support and information. I was diagnosed at age 51 and am going strong 21 years later! My suggestion is to ditch the "worry" and simply work to stay positive and informed.

gardening-girl

[Sushibruno in reply to gardening-girl]

I want to have the same attitude, 21 years wow happy for u.

[Ironj in reply to Sushibruno]

I agree with you Lidia 21 years and beyond sounds great.

[Sushibruno in reply to Ironj]

Yes indeed it does John☺

[Newchallnge in reply to gardening-girl]

Ok thanks and I will try my best! Thanks to the other posts below as well. I’ll take your lead!

[Ironj]

I agree 100 💯 with you I don’t want to ever have chemo in fact I hope I never need treatment. But if I did I would really push for the new novel agents. I understand Chemo is a life saver but I’m just afraid of the word.

[J_88 in reply to Ironj]

Agreed Ironj

[AdrianUK in reply to Ironj]

I think we are all scared of that word at first. But we are in the fortunate position globally that we have treatment options. But for various reasons not everyone has a choice on what their first treatment is. But for sure FCR can be an amazing treatment still for many people. And believe it or not after they have read all the data some people who could get one of the newer treatments end up ultimately choosing to go for the chemo after all. The decision is certainly not as clear cut as our understandable initial chemo phobia might make us think. And I do say this as someone who’s having chemo at the moment and had a pretty rough time with the first cycle. But I’m also glad that it seems to be working in terms of slashing my numbers and nodes.

[Ironj in reply to AdrianUK]

Good evening Adrian

My last visit with My SLL special I asked him if I needed treatment today what would he propose for me. Based on my fortunate prognostic values all doors would be open for me. He did say FCR is a very good option putting people in very deep remission to a point with so people that they can call it a cure of some degree. He also touched on the new novel agents and there benefits. The bottom line was the choice would be my choice and that all options were good with potential side effects with all of them. I wish you well with your FCR and hope you get that very Deep remission.

[Newchallnge in reply to AdrianUK]

Hi Adrian and Ironj, I worry for me and others that are younger, we may need many courses over our lifetime. what is your opinion: the data is solid for fcr...But I don’t think we can compare it to the new drugs yet because they haven’t been around long enough (2014 for ibrutinib) ...hopefully as the Patients and associated data Mature it will be just as good or better than fcr. I worry if I needed fcr now, would the toxity and chance of a second cancer be too risky if life expectancy was to 81 which is the average. So I am wondering what I would take over, say 30 years...start with fcr and then new drugs or start with new drugs....

It sure there are any studies that may indicate what the proper sequencing is for younger patients...

[DriedSeaweed in reply to Newchallnge]

"Best foot forward first... not saving agents for later on..."

Key Insights in Chronic Lymphocytic Leukemia: from Lymphoma & Myeloma 2018 - youtu.be/WOfqcH9X6x8(Not working as expected?)

(Been posted but best answer so far in my opinion..)

[Newchallnge in reply to DriedSeaweed]

Pretty clear. Thanks

[AdrianUK in reply to Newchallnge]

Hi. This is hitting the nail on the head of the dilemma. A lot depends if you are brave Enough to think that you can effectively get a cure from any of these treatments. As I’m also unmutated I’ve taken the view that I will almost certainly need to work my way through all of them. If you click my name and go back a bit you can see my older posts where I wrestled with the data and these exact questions.

I decided to go with the FLAIR trial which we it’s taking place in the NHS where the newer drugs are funded second and third line for everyone and flair patients will be followed up for life we really willl be looking at whether it makes any difference which regime you get first if you can get other drugs later.

If FCR can bank me a few years I see no reason not to take those years either now or down the line (tho of course eventually it may be super-ceded altogether). So as a Brit FLAIR seemed like a no brained to me.

But I won’t repeat all my old posts. Would be awesome to discuss your thoughts on them when you have a chance to look at them and the data I link to from them. It starts with pros and cons of FCR vs Ibrutinib.

You sound like a smart person who wants to get your head round all this. Two warnings. 1. It will take a while and some effort. 2. Be prepared for the frustration of realizing that there’s loads of questions nobody has the answers for.

[Newchallnge in reply to AdrianUK]

Will do! Thanks and I hope your plowing through with your therapy.

[MsLockYourPosts Passed Volunteer]

I was diagnosed in 2003. I recently came across the LLS (Leukemia and Lymphoma Society) booklet about CLL that I was given back then, and just out of curiosity lined it up with the most current one. The most basic information hadn’t changed. Everything about standard treatment, newly approved drugs and trials, and even advances in what is tested for and how was new.

Hopefully it will be years, if ever, before you need to consider treatment. Scan through the information about what’s being used now, and what’s in trials, but don’t obsess about understanding every word. Just get familiar with approaches and the names of the drugs as they come up. I have given up on really learning all of the new names - too many (good for us) and too much work, as I expect that things will have moved on before I need to learn to pronounce whatever is current, should I need to consider treatment again. Should you need treatment you will have a good base for concentrating on what you need to know at that point when discussing things with your doctor.

[Newchallnge]

Thank you for the great advice.

[skykomish]

Welcome! I have found this forum to be an invaluable resource. I was diagnosed four years ago at age 48. I have medium risk prognostics, so I expected that I would need treatment relatively soon, and I did. Because of my relatively young age, playing for the long term was very important to me. My GP referred me to a local hemo/oncologists. But the key thing was that my GP also referred me for consult with a CLL specialist. The local hemo/oncologists monitored me during watch and wait, and when I needed treatment, I was able to immediately see the specialist. I chose treatment in a clinical trial. As you’ll hear said here again and again, get a specialist on the team if at all possible.

I wish you the very best for your future. You have every reason to be confident.

[AdrianUK in reply to skykomish]

Totally agree. The only exception would be if geography or finances force you not to see a specialist and if you see fortunate enough to find a local doctor who works very closely with a CLL specialist and/or is happy for you to see someone at key decision points and follow their advice.

In the UK I would always suggest being seen at a FLAIR site if at all possible even during watch and wait personally. As at least those sites all work together at least to some Degree and have shown an interest in and commitment to CLL by being part of the study. There’s about 100 of those sites and a smaller proportion of them will also have at least one true CLL internationally recognized published author on board (Eg Leeds, Manchester, and several hospitals in London).

[Newchallnge in reply to AdrianUK]

Thank you Adrian. I’m outside on NYC and I am for tunate to have access to two specialist. One who is hands on and treats many patients and another who is a major trial doctor. I feel like I have a great team for whatever the future may bring.

[AdrianUK in reply to Newchallnge]

Sounds like the best of both worlds. I am guessing at least for now you are on watch and wait. Which is totally odd to get our head round at first. They are telling you there’s cancer in every drop of blood in your body and every lymph node but we aren’t going to do anything! Even as they explain the logic to us emotionally it seems crazy. I explained it to one of the nurses here tonight that it feels like during watch and wait id come home to my family home and found out it had been invaded by one of those accidental flash parties where a kid gets their party all over Facebook by mistake. And these youths are trashing your house. But everyone is telling you “well they haven’t set the house on fire yet so let’s leave them well alone for now. After all we don’t want to make them more angry....!”

Or the other way I describe it is if someone has had forcibly thrown you out of an airplane and told you whatever you do Don’t pull the rip cord of your treatment parachute too early! Meanwhile we can see the ground hurtling towards us and the crash seems inevitable.

Truth be told if you are blessed to have slow moving largely asymptomatic disease believe it or not you will probably eventually get used to this watch and wait. You may even find a new found enjoyment of sky diving as you realize afresh how precious life is.

But where a CLL expert comes in is in making sure you don’t pull that rip cord of the treatment parachute too early or too Late. There are guidelines. But some of them are not that straightforward so a real expert opinion is invaluable.

[Newchallnge in reply to AdrianUK]

Thanks Adriane. Yes w&w and my numbers are stable since diagnoses last year. I definitely see life very differently these days. A regular day is a great day. Trying to evolve past the shock and amazement that this has happened. Every day gets a little better. Thanks for your contributions to our CLL community.

[Newchallnge in reply to skykomish]

Thank you for your insight skykomish.