Survival rate?

[ANA4]

How can I know the survival rate for my markers! Can I make a plan for 10 years ? I feel confused and depressed . It’s not easy to live with cll😌

[Smith123456]

Do not look at survival rates. they are BEFORE the advent of modern drugs. It takes at least 10 years after a time to have meaningful statistic.

[SofiaDeo]

It's not easy living with diabetes, or COPD, or heart disease, or any other long term disease. But they still plan. I think a big, big, part of the stress/confusion is that OUR particular long term disease has the word "cancer" associated with it. Cancer has traditionally killed quickly, and many current cancers still do. I know it took me a long time to wrap my head around the word "cancer". With the advent of the new therapies giving great results, we can't predict survival rates any more...because they keep going up!!If it helps, when I was diagnosed a decade ago the prognosis for people with my particular markers was poor and people didn't respond to available treatment. I was fortunate to have been at the start of the newer targeted therapies.... I had a nice almost 5 year remission. The CLL is back, I've had a few bumps, it's no longer well controlled. But I am confident SOMETHING will work again. I am still alive & people often comment that I don't "look sick". So make your plans! We don't have a relatively quick killer like many lung & breast cancers, we have more of a long term disease state to manage.

[ANA4 in reply to SofiaDeo]

Thank you so much for the uplifting words!

[HappyCatUK in reply to SofiaDeo]

Excellent reply Sofia, thank you.

I too was diagnosed ten years ago and worried myself sick for the first few months, having been given some scary information by a haematologist, and was left with the impression that I had maybe 5 years life expectancy. I remember back then I felt terrible fatigue and I seemed to get a lot of chest infections, which in hindsight were probably due to all the worries and fears I had. But after a while I realised that I wasn't feeling seriously any sicker than before the diagnosis and so I decided to focus on being as healthy as I could be and look after myself better, particularly in regards to stress levels. With the benefit of hindsight, I think one game changer for me was starting to take vitamin D after my levels were found to be low.

So here I am, 10 years later, fortunately with a slowly progressing disease and feeling a lot healthier than I thought I could ever be in those dark months after diagnosis.

I'm also thankful that there are some wonderful new therapies out there should I need treatment in the future. So I am full of hope.... now we just need to get rid of this wretched Covid 🤞

I hope this helps ANA4 x

[ANA4 in reply to HappyCatUK]

Hi HappyCatUK,

Your reply is most helpful, that gives me hope..Good luck with everything🌹

[HappyCatUK in reply to ANA4]

Thank you Ana4.

I'm sorry ... I realise now that I should have checked your profile before posting. I had wrongly assumed you were recently diagnosed, I didn't realise you were already into treatment and maybe my reply was not as helpful as I'd intended. You already know that there are some great new treatments out there!

Wishing you all the very best for a healthy 2021 😘 x

[ANA4 in reply to HappyCatUK]

💙

[Tylex4032 in reply to HappyCatUK]

My dearest Happy:Your words mean so much to me. Such a positive attitude puts my heart more at ease. I worry all the time. My stress level is through the roof. Thank you so much for inspiring me. I’ve just got to reduce my stress level. Whatever will be, will be. We can’t change whatever our destiny was meant to be. ❤️

[HappyCatUK in reply to Tylex4032]

Tylex, I am so glad if I've helped you. Continual stress is horrible and I know it's hard to stop worrying - a dear friend of mine said recently that I worry far too much about everything, and she is right, I could worry for England! But I'm much better than I was, I now just try to look for silver linings when things go wrong (there usually is one, even if it's only maybe some dark humour to enjoy! ) and also try to reframe my negative thoughts, and of course, count my blessings frequently. I look back and realise I wasted so much energy being stressed over stuff that I couldn't actually affect. As you so rightly say, whatever will be, will be!

And regarding not being able to change whatever our destiny was meant to be, I agree, but may I add, imho, we can improve our journey there by being kind to ourselves and others along the way! (Gosh, this is deep thinking for me at breakfast time!🙀)

HappyCat 😻💕

[Rpshe1]

I was diagnosed 10 years ago Had treatment 5 years ago. Labs are normal & checked every 6 months. Life is good! Plan away!

[Sushibruno in reply to Rpshe1]

What was your treatment?

[Rpshe1 in reply to Sushibruno]

I am Unmutated & Trisomy 12, I went to a CLL specialist out of state (I was living in California at the time). Dr Sharman had a study of Gazyva & Bendimustine that he felt I would get a good response from. (5-7 years before needing treatment again).Well I made to 5 years & hoping for several more before another treatment is necessary 🤞🏼

[Sushibruno in reply to Rpshe1]

👍👍

[Me2AsWell]

unmutated

kel555

kel555•

15 days ago•35 Replies

hi all merry christmas iam not getting much response unmutated cll folk on this site is there only 4 just like to learn a bit more on the subject thats all ,,thankyou ,,kel 555

Jump to replies

Featured Content

How to search for answers in previous posts

Your question may have already have been answered

Featured by CLL Support

Me2AsWell

Reply to kel555

35 Replies

oldest • newest

SofiaDeoSofiaDeo

15 days ago

Are you referring to unmutated IGHV? I am one, and I know there are others. Some of us put some of our flow cytomerty, FISH, mutation status, etc. in our profiles. We may not post our markers, mutation status, etc. for every question.

kel555kel555 in reply to SofiaDeo

14 days ago

thankyou

Jm954Jm954Administrator

15 days ago

Hi there, your last post had an answer from Dr Brian Koffman who gave a pretty definitive answer about your likely length of remission, being unmutated and having FCR. However, it's impossible to say how long any individual person's remission will be because statistics only tell us about populations and not each person.About 40% of CLL people are IGHV unmutated and, generally their remissions are shorter than mutated patients after FCR, Having said that, the new targeted therapies are very effective treatments for relapsed CLL.

Please don't spoil your time in remission by worrying about this, enjoy your new health and do the things you enjoy when you can.

Best wishes and season's greetings

Jackie

mikec11mikec11 in reply to Jm954

15 days ago

Well said!

kel555kel555 in reply to Jm954

14 days ago

thankyou

WinJ3WinJ3

15 days ago

Hi Kil555, I am unmutated IGHV and Trisomy 12. I began treatment with Gazyva in 2018 and then Imbruvica in 2019.

If you use this HealthUnlocked site you’ll get 560 post and 99 members referencing unmutated:

healthunlocked.com/cllsuppo...

Win

kel555kel555 in reply to WinJ3

14 days ago

thankyou

AussieNeilAussieNeilAdministrator

15 days ago

Actually about half of CLL diagnoses are unmutated IGHV. Further, because unmutated IGHV correlates with a shorter time to treatment and at least with older chemo treatments, typically shorter remissions, the majority of our members in treatment are likely to be unmutated IGHV. Remember that outside of the USA, it is very difficult, if not impossible to get your IGHV mutation status tested as it is nearly always not a factor used in treatment decisions - but should be!

Thankfully, the UK is moving to non-chemo first line treatments. Your remission after FCR may still be quite reasonable and you are now able to access non-chemo follow-up treatments where you live. There isn't the big difference in response seen with non-chemo treatments that are observed with FCR and BR in unmutated folk.

Neil

kel555kel555 in reply to AussieNeil

14 days ago

thankyou neil

mikec11mikec11

15 days ago

As others have pointed out, always remember that CLL is heterogeneous. Meaning it is highly variable at the individual level. Some that are unmutated never need treatment. Just like some 17p can be indolent for a very long time. Science follows the herd and doctors follow individuals.

kel555kel555 in reply to mikec11

14 days ago

thankyou

Big_DeeBig_Dee in reply to mikec11

14 days ago

Hello mikec11

I really like the way you put that. Well worth remembering. Merry Christmas.

cajunjeffcajunjeff

15 days ago

If you want to learn more about mutated/unmutated Cll from a lay person perspective, here is a post I wrote about it earlier this year:

healthunlocked.com/cllsuppo...

kel555kel555 in reply to cajunjeff

14 days ago

thankyou

SofiaDeoSofiaDeo

15 days ago

Yup, in my opinion saying "I have CLL" is often like saying "I have an infection". There are lots of types, causes, treatments & responses to both disease states. And I (former south Florida resident) tend to think of each major incident in my CLL as a hurricane that blew into my life. I have to deal with each incident, but try not to worry in between because like the weather, it can be unpredictable and there's no upside to worrying about it. And someone recently posted a thought I am adding to my personal mantra: it was something along the lines of "worrying about something that may or may not happen means you put yourself through it twice".

SushibrunoSushibruno in reply to SofiaDeo

15 days ago

Im the total opposite and im not proud of it. I wish I could stop this constant worrying that gets to me mentally the most. I really don't want to worry about this everyday. (It's been 3 years)

SofiaDeoSofiaDeo in reply to Sushibruno

15 days ago

But IMO Sushi, you still have some active hurricane going on right now. It's especially tough to try not to worry & react when you are actively symptomatic! Even if the symptoms are not due to CLL. The shoulder thing, your current pins/needles, on top of pandemic isolation & pandemic stressors. Ugh. You are having a hard time & I wish you weren't. Virtual hugs from me & licks from my doggie!

SushibrunoSushibruno in reply to SofiaDeo

15 days ago

🙂🙃🙂 "licks from the doggie" lol thank you.

kel555kel555 in reply to SofiaDeo

14 days ago

thankyou

kel555kel555 in reply to kel555

14 days ago

thankyou

cllady01cllady01Volunteer

15 days ago

kel, your first inquiry included those who had had FCR treatment and the question if they had had more than 3 years remission. There are many members who are unmutated, but those treated with FCR are becoming fewer as time goes on.

I am 11q deleted, unmutated (oh not good markers!) but now entering my sixth year post FCR ... slowly relapsing and a bit lumpy but feeling fine, and stringing it out in splendid isolation to reach the summer before I go for the next intervention - ibrutinib or venetoclax? There really is no point in letting CLL worry us - worry won't cure it (believe me I've tried this route) ... the scientific horizon keeps expanding in front of us and I am optimistic! All the very best from another fellow traveler on this journey. Do plan ahead!!

[Smakwater]

ANA4,

It is important to listen to your body and your doctor. Hopefully you are feeling capable according to your own expectations. A practice that often provides a desirable result is to live as best you can within each day. Having a good day can add up to the sum of many good days.

Depending on your individual circumstance, devote a reasonable portion your effort to understanding what may improve and maintain your quality of life. First for the day, next for the short term, and finally for the long term. Implement the ideas for improvement as the days allow.

As you probably know although there are fixed elements of measure for CLL disease progression, the disease affects us all differently. Each of us have individual influences unique to ourselves. E.g, age, health and fitness, financial resources, medical resources, personal support, just to name a few.

A great example where someone with poor risk markers built a plan and executed it is Dr. Brian Koffman. Below is one such effort. You may try reaching out to him to continue this discussion.

cllsociety.org/wp-content/u...

All the best,

JM

[ANA4 in reply to Smakwater]

Many thanks 🙏

[Irishgreek]

I was diagnosed over three years ago, and feel better now than then. I began treatment immediately. There was no watch and wait; my lymph nodes were swolllen all over the body, red blood cells low and dropping, white cell count well over 100,000, and fatigued and winded. I think of the potential beauty and good of each day - not a year or ten years from now. I gave up alcohol 16 years ago (I was an alcoholic). In both cases, CLL and alcoholism I felt I was a goner, morose, moody, regreting, and despressed - useless to anyone and myself. I learned over time (taught myself) to live joyfully in each day even with the proverbial occasion missteps and falls of any life.

Remember, survival rates are just a benchmark - and include millions who did not die in five or ten years but likely survived, 15, 20 or more years after a diagnosis. The CLL survival rate after five years is 83% and that really does not include the benefits of new drugs and therapies added the past five to ten years. We cannot successfully or fully live as people of the past or in some future time not promised to us or anyone. If we try either, we miss many beautiful days and moments at our feet. I will keep you in my prayers and thoughts ANA4.

Michael

[ANA4 in reply to Irishgreek]

Hi Irishgreek,Thank you for responding . Thank goodness for this support group. Huge best wishes. ANA

[DelrayDave]

Please believe what others have said. The survival statistics are no longer relevant. I was diagnosed in 2010 with trisomy 12 and CD38 PLUS, which almost certainly means "unmutated". My doc said I had an aggressive disease. Chlorambucil gave only a short remission. Then ibrutinib was approved. 11 years later at age 80 the cancer is in remission. The new drugs have meant the old statistics are meaningless. CLL can still kill. Just like the common flu or pneumonia. But no one asks what the survival rates are for the flu.

David

[ANA4 in reply to DelrayDave]

🌹