CLL - newly diagnosed

My bone marrow showed I am 90% trashed out with my cll. She says I have no more than 3 months before I start treatment. She wants to put me on Ibrutinib. I asked her do you put in my numbers and it give you best the choice for me in my treatment. She said she could give me a referral for a second opinion but she feels this is the best route. You know this decision effects my life. If Ibrutinib doesn’t work out for me then we can look at other treatments. When I read about cll it sounds like my doctor is doing what other doctors would be doing for me. My doctor said Tina it is in your bone marrow and I can give you quality of life but you will never be cured. She said i could live a long time with cll. I am hoping 80. I am 58 and 80 is right around the corner. I haven’t experience the night sweats yet and I work 40 hours a week at a gift shop. I do feel my energy going down but to be told my life is getting ready to change. Yikes. A lot to think about. I guess my only question is would you get a second opinion. I think I know in my heart this is the protocol that every doctor would do, but I have nothing to back that up. lol Thank you for this moment. It is therapy.

Hi Tina, you’ve had a heck of a day. I know this isn’t the news you were hoping for but you have options for a long and happy life ahead of you. Your chronic lymphocytic leukemia, as you’ve so perfectly said, pretty much trashed your marrow. Bone marrow is the home of the immune system and when it becomes completely compromised, so does your health on every level.

You now have the option of a valuable treatment ahead of you which will potentially save your life, giving you hundreds of sunsets and sunrises, holidays with families and friends…the gift of time…the gift of hope.
In doing a little research, Ibrutinib is very much the standard treatment for CLL. It’s a a medication designed to stop the progression of CLL. As with any medications there are potential side effects but most people experience very little. The 40 year old young father who lives next door to me is on it and doing really well. You’d never know he has CLL.

You’re fortunate in that you’ve had a significant time span where there was no need for treatment. CLL takes many years to develop and get to the point where it is no longer safe to delay being proactive. I had AML with several mutations. I had no time. I was diagnosed in the hospital the night I was admitted and barely made it to the next morning. The subsequent chemo I was on, along with abrogating meds, the bone marrow transplant and all of those meds I would gladly have exchanged for simply taking one medication. ☺️ We don’t always get the luxury of being able to decide when and how we change our lifestyles.

We’re often our worst enemies when it comes to making changes and facing the unknown. You’re used to your life as it is now. But within 3 months it is inevitable that you will be asked to make change if you want to have any chance at longevity. If you don’t start the treatment, you’ll decline in health and will eventually become quite ill. If you do start your treatment, you’ll have a chance for many more healthy decades! And it’s also better to begin treatment before the disease progresses to the point where it can’t be managed as easily.

A second opinion is always an option. Do you feel a level of comfort and confidence with your oncologist? If so, I think you can trust her judgment on the decision to start you on this medication. If you experience side effects there are other meds available. Ibrutinib has been used for several years with statically excellent results.

So my suggestion is to go into this without fear and dread. But keep the positive thought that this is going to extend your life! Your current lifestyle may not even be interrupted while taking this medication.
I’ve been to heck and back with statistically bad odds in the beginning. I’m living proof there is better living through chemistry. LOL. And I’ll continue to be here for your spot of therapy. ☺️

What is it you fear the most?

Wow you sound like you have been through it. I take my hat off to you. I guess my fear is the unknown. We all have headaches tummy aches but now I might have new aches and I have been strong all my life. I guess I don’t want anyone to see me weak. You know “I got this” attitude I told a person I guess I will put one foot in front of the other and just make sure my shoe laces are tied so I won’t fall. Thank you for your kindness.

Tina, we never know how strong we are until it’s the only option. You really will get through this, one foot in front of the other, one day at a time. We all fear the unknown but I also learned that fear is just a word.

I’ve mentioned this in other posts with members facing challenges they weren’t prepared for. When I was at a lowest point during my cancer journey, I wasn’t scared but ready for the inevitable. One of my night nurses came in to check my vitals. We both wordlessly looked at each other while he went about his tasks. When he was finished, he came over, hugged me and whispered in my ear, “The only thing stronger than fear is hope.”
I closed my eyes with this incredible surge of power. I knew I was going to be ok!
So, Tina dear, you are strong enough, but it IS ok to be weak. We don’t get prizes for always being brave or tough or not showing pain. We are human, vulnerable and mortal. But also, we’re capable, tenacious, and resilient! So if your shoe laces get tangled as you put one foot in front of the other, you’ll pick yourself right back up and strut your stuff like the walking miracle you are!

Do you have family at home or close friends nearby whom you can call for a morale boost if needed?

Do you know you just put tears in my eyes? Sweet words. I have a dear friend that I call twice a day like forever. My husband has always been there for me. I do have support. I am truly bless. I need to count those blessings. Never strutted but I like the vision. Saturday Fever just came in my head. lol. You really are kind. I am sending my gratitude for those kind and strengthening words.

Well, now I’m all misty-eyed, thank you. ☺️ And I have an earworm for the day…you too!! 🎶 Stayin’ Alive. 🎶

I’m glad you have a strong support team. Though I really think you’ll find that this medication will just become part of your daily life and you’ll not have any issues.

I dreaded the thought of all the meds that I had to talk about with the pharmacist on my transplant team. I’d never had more than Vit D3 tabs in my medicine cabinet! Going from that to having a huge daily pill dispenser to keep the meds straight was intimidating. Not to mention the meds themselves! But I stopped reading the labels and starting letting the medications do their job. They all worked and only one of 9 meds gave me a hint of a side effect. You’re not on any of those meds! And you’ll be only taking one. It may not bother you at all but it will reduce the chance of your CLL taking over.

Even on the meds, I’m back to walking 6-8 miles daily and feeling like a nothing ever happened. So go put on those disco boots and kick CLL’s butt! LOL

Good morning. Brand new to this forum. Was diagnosed with CLL a year and a half ago at age 57. Total shock as I have been very healthy all my life. I'm very fortunate to still be very healthy, considering! I find myself still in denial at times, as I have no symptoms that I am aware of. I have one comment and one question...
My oldest son was diagnosed with ALL at the age of 3, and is now a healthy, wonderful 31 year old. I am grateful beyond words for that miracle. I also just learned that my Dad has had CLL since he was 58 and he is now 80! Also heard over the years that my Great Grandfather had leukemia, but that was many years ago, so not sure what kind. My maternal Grandfather also died of leukemia, but again, not sure what form. Anyone else have a family history of CLL or other forms of leukemia? I may take part in a study at Dana Farber, but have not shared my diagnosis with my parents as I don't want to worry them if there is no need to.
My question is this: has anyone's doctor warned them about being very careful Not to get Covid? I have had 5 shots, try and stay out of crowds, wear a mask in public always since the start of the pandemic. Of course I don't want to get Covid and have been lucky that no one in my immediate family has. But I was wondering if it is necessary to constantly wear a mask around everyone outside of my immediate family and a few close friends, if going out to eat is off limits, if wearing a mask around anyone I know that has Not been vaccinated? I don't mean to whine, but being the only one wearing a mask (or so it seems!) and avoiding many of the things I used to do (or people that are not vaccinated) out of caution is on my mind frequently. Anyone have any thoughts?
Thank you.

Just to let you know I've had Cll for about seven years now and have been quite healthy since. I am currently on what the doctor calls watch and wait. Last year I came down with Covid and had what seemed like a nasty case of the flu. After about two weeks I recovered with no side effects. Maybe I was just lucky, but it seems if you take care of your health and caught Covid you have a good chance of recovery. By the way I had been vaccinated three times by that point and still caught it. Just live your life as you want and don't let this drag you down. Most of the time I forget I even have it. I see my doctor once a year and he says it will be many more before I need any treatment. Good luck to you

First learned of my CLL (level o) diagnosis nearly 9 years ago and now at 72 yrs young I’m healthy and very active. I do blood work twice a year and seldom think of my condition. Completed all my Covid shots and luckily no Covid contact.
Best of luck
Carl

Hi @tinagibson, it’s been quite a long time since we’ve chatted. I wanted to do a little followup to see how you’re doing with your CLL and what treatments are working for you?