It's been a long haul

[biplane]

Hi to everyone, I'm new on this forum but not new to CLL. Sorry if this is a bit long but I'm hoping some might get some encouragement from my journey with CLL. I was diagnosed just after my 40th birthday, I had been a Firefighter with the city for 7 years, married and had 3 boys, ages 14, 11 and 6. I was/am a non smoker, never liked alcohol or drugs and was in pretty good shape physically. My regular blood work showed the problem and the Dr said I would be seeing an Oncologist. My wife and I were shocked with the diagnosis and it seems funny now but one of my first thoughts after, being a bit of a car guy,  was that I would probably not be around to teach my sons to drive. Well the 14yr old just had his 44th birthday so the quick math you've probably just done tells you I've been just over 30 years on this journey. Still married to the same lovely wife, taught all three of the boys to drive and retired from the Fire Dept in 2011 with 25 years.  It has not all been easy, I was W&W for 6 years with a steady increase in WBC numbers, in 98 I had a splenectomy due to it being severely enlarged. When 2000 came my WBC had increased to 225K and I was having trouble doing my job, firefighting is a bit of a misunderstood profession, when you are called to work you need to work and I was at that point not able to do it. I had a six month treatment with Fludarabine which I tolerated well and was back at work in the fall of 2000. The climb of WBC numbers started again within months and I repeated the Fludara treatment in 2003. On leaving the Oncology ward in June of 03 the nurse wished me well and said "we'll see you in a few years".   I have had the usual annual checks but the first time I have seen an Oncologist for other than an annual check was in August of 2020. Between 03 and 20 my WBC count climbed to 40 - 45K and stayed in that range for nearly 18 years. I had no other symptoms or problems no meds and lived a very normal life. Since 2020 the count has gone up and if I were younger i'd have waited a bit longer but decided to start treatments. In sept I started Obinutuzumab&Venetoclax and have my 4th IV of O next week and am on the full 400mg of V per day with all going well except for about 2hrs discomfort from the V pills each day. All blood numbers are pretty much normal now and hoping for the best. I know how lucky I've been with this journey and wish you all the best on yours. Told the Doc I'd be OK with another 30 years!    Jerry

[Panz]

There are many people such as yourself and myself doing quite well with CLL. I am working on my 34th year and I have never felt better. I worked full time until age 72 at which time I began IVIG infusions every 4 weeks and that is huge in keeping me in a safe place. I am on my third line treatment…Calquence and labs are nearly normal. MERRY CHRISTMAS to you and your entire family!!!🎄🎅🏻🤶🏻🎄

Panz 🙏☘️👍🙂🌈

[LeoPa in reply to Panz]

Hey I'm sure you did feel better but it was so long ago you don't remember it 🤣. Merry Christmas!

[Newdawn Administrator]

Thanks for posting Jerry and your story will inspire and reassure especially our newer and younger members who fear for the future. When I started reading your account, I was waiting for the sudden plunge into bad news so felt really cheered when the rollercoaster remained steady whilst taking the twists, turns and dips as a part of life.

You haven’t restricted your post to this community so if anonymity is important to you, it may be advisable to do so.

I’m 10 years and 7 months into this crazy CLL world and like you, it hasn’t always been easy but it’s very different from the result I anticipated on day one when I considered ticking the days off the calendar.

Here’s to many, many more years and happy family time. I had Venetoclax too and I’m a great believer in the big V for victory. In CLL destruction terms, it leaves no prisoners 😉

Newdawn

[Poodle2]

Jerry, what a lovely story to read. So happy you are doing well! I'm on the same treatment at the moment, cycle 6. I'm done with my infusions and I also have 3 kids, hope I can post in 30 years like yourself 🙏🏻❤️Petra

[LeoPa in reply to Poodle2]

Amen to your posting in 30 years Petra!

[Jackpot]

Yes, a lovely story to read indeed. Thank you for sharing it with us. May you continue to have many more years of good health and many happy times with your family.

Cindy

Canada

[CycleWonder]

Congratulations on being alive after teaching your teens to drive! Always a heartrending experience.😂

And also for surviving and thriving this long with CLL. I hope your current treatment is easier non you than the earlier ones,

[LeoPa]

Thank you for sharing this encouraging story! " The nurse wished me well and said "we'll see you in a few years" " - nothing like an optimistic nurse 🤣

How did not having a spleen change your life? Isn't it supposed to perform some important immune functions? Do you need to take any meds on account of not having a spleen?

[biplane in reply to LeoPa]

Hi LeoPa The strange bit about the nurses is I'm finally going back for treatments and they are all retired, only one there that remembers me and she is in management.

I suspect the drugs today may work to reduce an enlarged spleen but in my case, 24 years ago, they suggested removal and warned that rupturing it prior to the operation would be bad. The Dr who did the surgery said after that it was just under 6lbs on removal. I have had no issues from not having a spleen, I do get a shot about every 5 or so years, think it's called pneumovax, but other than that nothing. Jerry

[Harvist]

A good story to read. I'm 70 too and diagnosed 13 years ago. Had the same inner thoughts but I have been lucky and still on W&W. My problems and worries are the combinations of other things life throws at us.

Been Type 1 diabetic since the age of 13 and always had the background worry that I would be leaving wife and kids early. Then CLL was added to the equation of fear. Every op or treatment builds on that anxiety. (Hernia op, gall bladder removal, cataracts....).

Then this year I had a heart attack. Again I was lucky. No invasive surgery needed just a ton of pills to catalogue carefully. But a month later I caught covid, from where I don't know. I've been shielding and limiting all social/family contacts. But of course the heart drugs meant paxlovid was banned and I had to have the sotrimovab infusion. No problems and recovery was swift.

I know I have been very lucky but there is a constant niggle in my head that the increasing combination of "things wrong with me" will at some time cause the dam to break.

I think all of us have that background worry constantly but as many of us on this forum say "We have a life and we must be grateful for the medical advances in CLL and live the life we have as joyfully as we can".

[biplane in reply to Harvist]

Hi Harvist Thanks for your reply, you certainly have been given more than your share to deal with but your last paragraph seems to tell me you can handle this, Hang in there my friend, best wishes. Jerry

[Potplant]

Hi Biplane - thanks for sharing your positive and optimistic story, which will be so helpful for people newly diagnosed with CLL, who may be feeling anxious.

Good luck with the V&O - it's helped me a lot, as it has so many others.

Hope you have a great Christmas and enjoy many more healthy years with your 'lovely wife' and family!

Linda 🙂

[Sepsur]

brilliant

[Pin57]

Wow … 30 years w/CLL and motoring along, your story for those like me w/early W&W, 2 yrs post CLL dx, is an inspiration. At dx, my doc told me “I’d likely die w/CLL not because of it”, but it’s real life stories like yours here on this awesome forum that really backs up that claim about CLL. I thank you for sharing, and also for your first responder work as a firefighter too.

You’re teaching your kids to drive story brought back memories of the days my dad did same with my two older brothers and then me. Driving lessons was part of our weekly fishing trips at a young age as my dad “trained” us on the backroads of Michigan’s mitten looking “thumb” rural area with our family stick-shift 68-Chevy Nova.

Thanks again for your post and I second your optimism of another 30 years ahead, hey … you’ll be a century old then. Having been a firefighter, you’ll know how to put out those 100 candles on your cake! 😀

Danny

[MickUK]

An inspiring story, Jerry. I'm starting my Obinutuzumab & Venetoclax journey tomorrow and I'll settle for the 2hrs discomfort when I start Venetoclax in January, hoping for no other side effects.

I wish you the best of luck for the rest of your cycles and a merry Christmas!

Mick

[biplane in reply to MickUK]

Hi Mick Thanks for your reply, I had no issues at all with the low dose V but found it a bit nauseous at the 400mg level but after about two weeks it started getting better and I now take the pills 2 and 2 about an hour apart and am having very little difficulty with them. My first IV of the O was a bit exciting, 1/2 dose first day as I expect you will take. About half way through I felt cold and started to shiver which quickly went to an uncontrollable shaking, the nurses quickly responded doing all the right things and in minutes I was fine. Said it was a reaction to the drug, they added something, slowed the drip for the O and all was fine. Four full dose treatments since with no issues at all. Not trying to worry you but I wish I had known before that something like that might happen, was a bit scary not being prepared. Wish you the best. Jerry

[MickUK in reply to biplane]

Thank you for the useful info. Jerry.

[Rachat35]

Wonderful! You are a Ray of hope for those of us afflicted with CLL. I wish you continued well being and to all of us as journey through life. Merry Christmas and God bless us all everyone!

[Teddo]

Thank you so much for sharing your story. Mission accomplished. Your story will help many of us.