Hello, and thank you for letting me join and sharing all your amazing personal stories. I had Covid back in mid March and was left with heart palpitations & swelling in my neck. Work up eventually revealing CLL. I fought Covid very hard with good rest & nutrition and feel very lucky with my unknown diagnosis of CLL at the time that I survived. Residual symptoms of swelling neck pain, left forehead pain led my doctors to giving me a 2 week course of Augmentin. Neck pain and headaches now improved but not completely resolved. Sinus CT normal. We are now not sure if this is post Covid or CLL related? I was staged as 0 by the oncologist for CLL. I am almost 60 years old and grateful to be at stage 0 but neck still painful. Ultrasound revealed enlarged lymph nodes, but oncologist said these should not be painful. Has anyone experienced anything similar? Is there anyone that has been diagnosed with CLL post Covid? Are there any recommendations for me? Scared but grateful to have found this group.
Newly diagnosed with questions : Hello, and... - CLL Support
Newly diagnosed with questions
Did you get bone marrow biopsy?
I was diagnosed in 2007 at 60 yrs old with poor markers CD38, trisomy 12+ unmutated, Rai stage 2 or 3. I was on watch and watch 11-1/2 yrs. After 3 yrs I had an oncologist actually several not CLL specialists that wanted me to start treatment right away. Thankful I went for another opinion in 2011 with Dr Kant Rai CLL SPECIALIST on LI NY, who told me no treatment yet and no more CT Scans. Don’t worry about your markers. Enjoy life. New drugs Coming down the pipeline. Stay on watch and wait as long as I can. I did. Started treatment with imbruvica in 2018. So far so good. Anxiety will always rear it’s head without a doubt. Wish you an easy journey.
Thank you! Yes great to hear your story and so glad you have had success. This is encouraging to me. My oncologist said to wait, and said treatments are changing almost daily. He said the best advice he can give me is to go out there and enjoy life. So this is what I’m working on, but this darn neck pain. Not sure what it is all about and it seems to have all of the doctors stumped. Thank you Ginajetta!
I have chronic neck pain. I Know muscle tension and stress makes it worse and over using my electronic devices really aggravates it.
I share the neck pain
"Enjoy life", this made me take a deep breath..🙂
I’m new to the “club”. Diagnosed in July 2020 after high WBC following a routine physical. Feel like the rig has Been pulled from under me. Test were run things looked good. My second visit to the hematologists and reviewing my bloodwork. She said the word mutated I was afraid that was bad but she said no that is good. Ok..so more blood work 13q a sole Del. Stage 0. I finally told my kids ..then... 3 months later ..blood work. My DR. Was called out for a emergency so I saw her partner. Blood work done ..all is good. Then the DR said at some point you need to do the Test for mutations/un mutated. Both my husband and I said no I was told I was mutated. She couldn’t find the lab work..so I said do the test. Unfortunately it can’t back unmutated. I feel like I have been kicked in my gut.. I’m so depressed and scared. I’m new to North Florida so looking for A cll specialist. I can’t get my thoughts straight!
Welcome, I see that you have just joined our community.
I expect you are talking about the IGHV mutation test, which used to be far more important than it is now - at least in the USA, where you live (see below). Have you been googling and turning up out-dated information? IGHV mutation status rarely changes after diagnosis and when it does, it's most often due to a lab error, as testing can be hard to do accurately. There's also a cut-off percentage, below which you are considered unmutated and above, mutated. If you are close to the cut-off percentage, that could also explain the change in your test status. Are you able to share your actual test result, perhaps in a new post?
Having just 13q del is the best prognostic deletion - better than having what's termed a normal karyotype, where the cause of CLL developing is not a commonly tested for deletion/mutation. IGHV mutation correlates with a longer time to first treatment, and back when only the old chemo treatments were available, a shorter remission. In the USA, should you get to the point of needing treatment, a reputable specialist would treat you with a newer non-chemo treatment, where the differences between responses in IGHV mutated and unmutated folk are disappearing. There was even a recent combination trial, where early results showed unmutated folk did better early on than mutated folk, but the difference disappeared in a later assessment. That's how little difference there is nowadays. That you've already had your IGHV mutation status checked shows that you have found a knowledgeable haematologist. Sadly quite a few CLL patients don't get their IGHV mutation status tested before starting treatment, when that information is needed to ensure you aren't given FCR or BR treatment. See this CLL Society analysis: cllsociety.org/2019/08/ash-...
CLL Society also has a list of CLL specialists you can use to help find your new specialist near your new home in North Florida: cllsociety.org/toolbox/cll-...
Neil
Thank you for your response. I’m struggling with all that is happening. I was definitely blindsided by my initial diagnosis but as I said was settling into my new normal when I was completely hit in the gut with the latest blood test. I’m very depressed. I just can’t seem to break out of it. Hopeful I will see a CLL specialist in the next few weeks. Have made a few calls. Trying to get all my records sent out but with Thanksgiving and now Christmas it’s taking a bit longer. I unfortunately suffer with anxiety so this has put me close to breaking. I’m trying to read all the information I can so that I know what to ask and then follow up. I do appreciate all the work that people like you and many others are doing so that people like me can make some sense out of this. Thank you
I started treatment with Ibrutinib in January 2020, but before that lymph nodes in my neck had begun to give me a stiff neck kind of pain. The nodes have shrunk with the drug, but the stiff neck remains. I think alignment in my neck was thrown out of whack.
Interesting! I think the muscles must tense up with the enlarged lymph nodes?
Same happened to me. Now for back pain, neck pain, just about anything I look at the list of exercises to do to alleviate the pain on Bob and Brad's You Tube channel. They are physical therapists in the USA. If you're interested and well enough to do them, youtube.com/user/physicalth...
Hi. Thank you . I will check out the y-tube channel. Very helpful!
Good information. I have a set of exercises that I got through PT for my back, but always open to further help.
Hi I too suffer neck pain.
I have one large lymph node on the right side of my neck which is often sore and bulgy, swells up & goes down usually when I have a minor infection.
I have read posts saying not to keep touching as this can irritate them.
Warm heat pads & some say castor oil pads can help.
Good luck for a long W&W
Thank you! I will try your recommendations. I very much appreciate them.
Lem1 I can't comment on neck or node pain, but I have CLL and heart palpitations. Yours may be a carryover from C-19 but just FYI, there is a HU forum about heart issues as well should you have concerns about that.
marcyh
Have you tried a chiropractor? It might be a structural issue and not soft tissue. I have used Chiro for 40 years and it works for me.
No chiropractor yet but good idea!
My husband has had enlarged lymph nodes for several years- and when they flare up (to the point where can feel or even see them) his neck pain definitely worsens. And that is with weekly chiropractic visits. Interesting enough, he just started Gazyva (obinutuzimab) last week, and for the first time ever the chiropractor said he felt like he got a normal adjustment out of him.
Now, we think that was because it was steroid he got with the infusion probably helped keep inflammation at bay (because by the weekend he was back in pain). And, he also has arthritis in his spine. But his neck - it's always worse when the nodes flare up. 
We are, however, seeing a slow improvement with the Calquence (acalabrutinib) he's been on for 2 months. He's had more and more days without that kind of pain in his neck.
He also sees an acupuncturist every 2 weeks. One of our cancer clinics had one on staff, and he found that really helped with fatigue and getting lymph system moving to drain the nodes as much as possible.
Thank you very much for this opportunity. I see my doctor again tomorrow and see what she recommends. I will definitely look into acupuncture and physical therapy/ chiropractor. I hope your husband continues to do well!
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