CLL leukemia: Just diagnosed, what can be done?

@elissams143 I had a right lymph node biopsy in jan/23 giving me the CLL/SLL diagnosis; im guessing as they are both blood diseases? who knows....i am wait and see club as well; wonder why doctor thinks 5 years? my hematologist didn't go down that road with me; not sure why; are you showing any symptoms? other than lymph nodes thats it for me.

No real symptoms yet, more night sweats, and sweaty palms, and face flushing. I’m 70 so maybe beyond menopause hot flashes but that’s basically it. No other symptoms yet. It’s weird to just be waiting. They said when lymph nodes are 10mm then they will start treatment too, or if an organ becomes involved, or I exhibit more symptoms . Biggest lymph node was removed in a biopsy from groin 2 yrs ago. It was 2.7mm. I can find no real difference in CLL and SLL either when I read about it. Just 6 month check ups, blood work, ct scans. I’ve seen 3 different drs as well. All say the same thing.

Hello everyone.
I was recently diagnosed with cll. I also have thyroid cancer and renal cell carcinoma. All this within the last three years. As you could imagine life has been very difficult for me and I’m beginning to lose hope. Right now I’m very weak so if you would read my story at go fund me ( you don’t have to donate) I could use a few words of encouragement or anything. My family doesn’t even believe that I have cancer. Maybe they don’t want to accept the fact. I have four brothers and two sisters, none of which have cancer. Lucky me. The doctors want to take my left kidney. I can’t do it. I just can’t. When does it end? I don’t mean to be such a downer, but one can only take so much. My apologies. Maybe I’ll write again sometime. I hope all of you do well with your treatment and fight this terrible disease with everything you have and I’ll be rooting for every single one of you. Thank you for reading this. ~ Barbara Megara

Hello Barbara, Wish I could reach through this computer and give you a hug! You’ve been through heck and back the past 3 years…I know that feeling of trying to hold your head above water when it just keeps pouring! And my goodness, don’t apologize for being a downer…when you’re tired and weak it’s so difficult to feel positive! You’re feeling you’re at the end of the line of hope right now, but I want to toss you a life line.
Please don’t give up hope. I have to share my moment when I thought I had reached the end. My night nurse came in to check my vitals and puff my pillow. I felt I was in my final hours and made peace with the fact that I’d not wake up. When he was finished with his routine, he came over to the bed again and ducked down to give me a hug…he then whispered in my ear. “The only thing stronger than fear is hope.”
I couldn’t speak but I was able to make tears run down my cheek. That moment impacted me so strongly! I felt electricity inside and this sense of needing to push forward. That was a turning point for me. I want you to feel that sense, that spirit of endurance, so that you push through this for you and your family!

As for your family not believing you have cancer? Well, Barbara, because you’ve joined us on Connect, you’ve just gained an entirely new family. So many of us have had cancers and have lived to share our stories and are here to offer encouragement and support…unconditionally!

Let’s look at each one of these events that want to take you on. They don’t know who they’re messing around with! You can take control and be an ‘over-comer’!
The newest, CLL is generally a very slowly developing situation so that one can go on the back burner for a while and simmer.
But tell me about your thyroid cancer and the renal cell carcinoma?
What treatment have you received for your thyroid? Did you have your thyroid removed?

A positive note is that we were blessed with two kidneys and people live quite well with one. What has your doctor said about the removal and the positive outcome of having that done? Does your doctor feel the cancer is limited to that one kidney?

Greetings. Appreciate having this forum for comment and assistance. My initial CLL diagnosis was in 2014 when I was treated with Mabthera which affected my leg veins. I am 82. Started treatment again in January 2022 and resumed Mabthera treatment and now have peripheral neuropathy (feet/toes numb). My recent CT scan reveals there is interval increase in size of the conglomerate, large mesenteric nodal mass complex in the central abdomen. Pathological inguinal lymph adenopathy. Oncologist has delayed further treatment until July 2023. Would appreciate any comment or advice as to possible treatment . Thank you!

Hello @dorphy82, Welcome to Mayo Connect…as you can see you’re not alone in your journey with CLL. We have several members who are along the same path with you.
Our forum is made up of members just like you who come together for support and encouragement, so we can’t diagnose or offer treatments.

The Mabthera you were taking appears to be the standard treatment for CLL in Europe so I’m not sure why your doctor has delayed the therapy. It may be something as simple as a rest period to allow your side effects to subside.

Have you been able to ask your doctor why there is a delay?

Thank you for your response and support Lori. My oncologist simply admitted she does not know what treatment to pursue that will help me ...... I will start leukeran in July (which I also had in 2014), if that doesn't help, will try chemo and finally radiation. I am very active physically, the only symptom at present is a swollen abdomen. I do not expect a further diagnosis or treatment suggestion, simply would appreciate knowing what other members have tried with success ..... i.e. in 2014 I went on an extreme health regime taking Barleygreen, ginger, curcumin and fresh juices, etc but find the juicing time-consuming ......thanks again for your prompt response! Have a good day!

Sock drawer remains a mess, however the weeds I call lawn are beginning to look great. My new weed whacker is great. The doc called this afternoon. All the blood tests confirm CLL. Prognosis is good, my Stage is Zero. He will order same blood tests every six months to monitor my situation and that I am to live my normal life. I gotta tell you my relief level felt like I hit a home run. I think I will sleep well tonight, no waking up wondering if I am really ill and just in denial. I will keep an eye out here, but probably won't have a lot to say. I am so fortunate with this diagnosis, I will keep others in my prayers. Thank you for the kind words, understanding and patience.

Ah, there’s nothing like holding your breath, for what seems like months, and finally being able to exhale! I’m relieved right along with you that the news is good. Being at Stage 0 CLL and having bloodwork only every 6 months is a good indication that your doctor isn’t anticipating anything to raise eyebrows anytime soon…maybe never.
So, skip sorting the sock drawer and keep up with your lawn. That’s what people see anyway. 😅
Looking forward to followups from you. It’s always encouraging to anyone newly diagnosed with CLL to see the positive news like yours. Don’t be a stranger, ok?

Hi @aleeab, I just wanted to drop in to see how you’re doing. You were going to have a phone appt with your doctor on April 27th. Did you find out anything new?