What were your symptoms just prior to treatment?

[12Caine12]

What a great site, so glad I stumbled on to it. A big thank you for all the testimonies on my previous post. I have another question here, but first: My case seems quite unique in that I virtually have to symptoms other than an occasional dull ache in some lymph nodes (groin area) but no swelling. BTW castor oil applied to the nodes relieves the pain 90% of the time. My numbers are all quite good except my Neutrophil count is down to .5, and that is the reason for treatment. I feel quite good for 65 and other than the CLL, I'm in excellent physical shape, which makes this treatment thing hard to wrap my head around. Anyone have a case similar to mine?

[TimHB]

I had many symptoms that led me to go to the doctor resulting in my diagnosis and treatment. For about 6 months I felt like I was on the edge of a flu - sore throat, headaches, dizziness (all from enlarged lymph nodes in my neck); low appetite, nausea and sudden weight loss of 25 lbs (enlarged spleen); nighttime flop sweats, and debilitating narcolepsy-like fatigue among other things. It didn't help that my family kept telling me I looked terrible and urging me to go to the doctor. I finally went to the doctor - the results of my blood test sent me straight to the hospital where they looked for infection and after 6 days they finally told me I had CLL. (I had Googled my symptoms and came up with the same diagnosis before the docs did, but didn't say anything.) Visits to 3 CLL specialists for a second opinion confirmed Stage II, unmutated and in need of urgent treatment. I was referred to a clinical trial where I'm being treated with ibrutinib and Gazyva and 18 months later I'm doing great! Very grateful to have caught it at the right time and for my wonderful medical team.

[Hidden]

i have b-pll. i went because i thought i had leg blockage. full blood test showed 355,000 wbc. i also realize looking back that i had shortness of breath and tiredness.

[cajunjeff]

Caine, your case is actually not unique at all. Many people live with undiagnosed cll for many years precisely because they do not have symptoms that lead them to doctors.

As Cll progresses we can develop night sweats, have fatigue and experience more frequent and harder to treat infections due to a compromised immune system. There are other complications. Some experience these problems shortly after diagnosis, some go more than ten years without any symptoms.

And its not always easy to know. Is the cold we just caught due to our cll, or did we just get a cold like everyone else? If our colds and such become more frequent and more severe, cll becomes the more likely culprit. But not the cll itself, but rather the damage the cll did to our immune system. CLL doesn't cause infections, it just makes us more prone to them, if that makes any sense.

Swollen nodes like you describe are definitely cll related, but often asymptomatic. It depends where they are and they can wax and wane.

[12Caine12 in reply to cajunjeff]

Thanks for your reply! My nodes don't swell, just a mild ache occasionally. No other symptoms so far

[cajunjeff in reply to 12Caine12]

When most of us think about nodal symptoms with cll, its where cll cells circulate through the blood and lodge in nodes causing them to enlarge. To me, enlarged nodes and swollen nodes mean the same thing.

So I would not know of a mechanism for your nodes to ache as a result of cll. without cll cells accumulating and enlarging the node. Some nodes are easy to palpate to see if they are enlarged, some are so deep only a cat scan can tell if they have grown.

All that said, I am no doctor or expert. I would just think that if your nodes ache due to cll, they are either swollen or enlarged. That's what makes them ache. Some doctors will tell you cll nodes do not hurt, I had a couple that did. Maybe its not the node itself that hurts, it could be a node pressing on a nerve or something.

Welcome to the forum, there is a lot of good information here.

[Billhere in reply to cajunjeff]

Jeff, you’re a great commenter! You, Neil and CLLady. You three are really helpful! Thank you.

[annmcgowan]

Hi I had no symptoms pre treatment for 6.5 years. The only reason to treat was my Haemoglobin and platelets dropped ( quite common reason to treat) I discovered.

I still felt great at the start of treatment despite bloods saying otherwise.

I am in treatment now on Ibruitnib on Flair trial, 19 months in now. I reached complete remission after 17 months.

I still continue with the treatment and hope to maintain this for many years to come.

I was reluctant and afraid to go into treatment, especially as I didn’t feel ill. I am fine with this now and delighted with the results of this form of intervention so far.

I wish you luck.

Take care

Ann

[12Caine12 in reply to annmcgowan]

Thanks and good news. Are you taking ibrutinib plus rituximab? Are you taking lower doses since your numbers have normalized? Thanks in advance

[annmcgowan in reply to 12Caine12]

I am on the rituximab, ibrutinab arm of the Flair trial. Not on rituximab now, you only take it for 6 months, 1 infusion per month. I remain on the full dose of I Ibruitnib.

Ann

[GMa27]

I felt great and had no symptoms for 10 years on W&W. 11th year nodes popped up but felt fine. Anemia came but I still felt fine. In the 12th year my marrow was crowded so I finally after 2 second opinions got treatment. I'm in remission a year. I was lucky all those years....felt great. 💕

[12Caine12 in reply to GMa27]

Do you mind my asking what the treatment was, and are you still on meds? That kind of sounds like what I'm going through. Feeling fine but they say my marrow is being crowded. Going for a second opinion on Monday. Thanks!

[GMa27 in reply to 12Caine12]

I am 13 q mutated and was 63 so I did 3 rounds of FCR. Very successful. I didn't want to do Ibrutinib. Luckily FCR was first choice by my docs.

What are ur markers? 💕

[12Caine12 in reply to GMa27]

There were 6 genetic markers listed on my very recent FISH analysis (bone marrow) and all 6 were listed as not detected. I definitely like the idea of FCR over Imbruvica, which my doctor suggests (Imbruvica), since it's ends if successful. Apparently Imbruvica is a forever drug and VERY costly out of pocket expense.

[LovecuresCLL]

The reason you say you are being treated is neutropenia. When you have low numbers of neutrophils, you are subject to getting bacterial infections.

If you are susceptible to infections unlike folks with normal numbers of neutrophils, you are could get a life threatening illness in your lung, skin, kidney and other organs that may be difficult to fight and could lead to sepsis and even sudden death.

If neutrophils are severely depleted, it may mean that your bone marrow (blood cell producing center) is overrun with clonal malignant lymphocytes. If your platelets are also low (probably are), you could get cut and not be able to stop the bleeding.

I would have no problem being treated if my neutrophil numbers were as low as yours.

Treatment is not something to fear. But no one can force you to be treated either. You can choose to wait longer and wait until you get some bizarre pneumonia or a nasty infection on your skin etc to be treated. I would ask the doctor what your risk stratification is and to discuss the molecular features of your CLL and what that means as far as your risk and why this is the best time to start therapy.

I kept getting infections on my skin like shingles which is a virus that can disseminate and kill you. I also got two bacterial infections that were really bad and these bouts landed me in the emergency room so they gave me intravenous antibiotics so I didn’t become septic and die, until my doctor figured out that I had CLL which was the underlying problem.

If you doubt your doctor’s opinion, you should go for a second opinion.

Treatment nowadays is getting better and better.

If you have doubts still, I suggest getting another opinion from another CLL specialist.

I am glad you feel you are in “excellent shape”. I hope you find the answers that you need. I wish I could be of more help.

Best wishes to you,

J

[12Caine12 in reply to LovecuresCLL]

Thank you! I'm going for a second opinion on Monday but after the many wonderful responses, I'm starting to accept my situation.

[LovecuresCLL]

Did you have osteomalacia as an adult or rickets as a child? That’s very severe to have so many fractures. How long do you think you were deficient in vitamin D?

[Catnap7]

Just prior to first treatment (B&R) I was actually choking from huge lymph nodes

Same thing prior to second treatment (I&V) Went from football player to tiny ballerina neck.

Catnap7

[LovecuresCLL in reply to Catnap7]

Wow very interesting . That’s sounds just awful. Thank goodness the nodes shrunk.

[Stelladoro]

Hey 12 thanks for advice re Castro oil

I have many swollen lymph nodes in my neck.....they are itchy sometimes but not uncomfortable!

No treatment yet?

[BeTheSmile]

My first oncologist wanted to treat in 2009 when my white blood cell count was about 30,000. A second opinion suggested "watch and wait", and I was able to do that for 7 years. At that point, my WBC was about 75,000 but more importantly, my spleen was swollen. During those 7 years, major new treatments came to market. You might see if anyone recommends W&W.

[12Caine12 in reply to BeTheSmile]

Mind my asking what treatment and how it went with the treatment. Thanks!

[Lisa-1959]

I had almost 22 years of watch & wait from point of diagnosis until starting treatment, and I really had no symptoms. I felt fine, didn't have fatigue (even though I was slightly anemic), and I didn't have night sweats. In 2018, I wound up in the hospital twice because my immune system couldn't fight off infections (IGG was ~250), plus my spleen had gotten up to 22 cm although it didn't bother me at all. My oncologist recommended beginning treatments by looking at the totality of what was going on. I initially started on Ibrutinib in August 2018 but was switched to Venetoclax & Rituxin this year.

[J_88 in reply to Lisa-1959]

22 years that is amazing. How old were you at diagnosis? Do you know your deletions?

[Lisa-1959 in reply to J_88]

I am 13q which I know is the most favorable. I was 37 when I was diagnosed, but my doctor had been watching an enlarged lymph node on my neck since I was ~33. Plus I had an enlarged node removed from my left arm pit when I was 35...it was called "reactive".

[J_88 in reply to Lisa-1959]

I was diagnosed at 30 last year i'm in watch and wait.

[Lisa-1959 in reply to J_88]

Ugh on being so young when you were diagnosed! Pray you will have many years of watch and wait before needing treatment. As in my case, the medical advances were tremendous during those years of watch and wait...certainly praying a cure will be found in the not too distant future!

[J_88 in reply to Lisa-1959]

Ya it was scary still kinda is, hopefully i won't ever need treatment but at my age i probably will need it at some point.