Newly diagnosed with questions : Hello, and... - CLL Support

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Newly diagnosed with questions

Lem1
Lem1

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.

25 Replies
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Did you get bone marrow biopsy?

Lem1
Lem1 in reply to Ginajetta

Hi , no but they were able to do Cytology & FISH on my blood sample and confirmed for all CLL

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.

Lem1
Lem1 in reply to Ginajetta

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!

Ginajetta
Ginajetta in reply to Lem1

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

Sushibruno
Sushibruno in reply to Ginajetta

"Enjoy life", this made me take a deep breath..🙂

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.

Lem1
Lem1 in reply to Mprm

Interesting! I think the muscles must tense up with the enlarged lymph nodes?

Mprm
Mprm in reply to Lem1

Or press on a nerve.

bluenet
bluenet in reply to Mprm

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...

Lem1
Lem1 in reply to bluenet

Hi. Thank you . I will check out the y-tube channel. Very helpful!

Mprm
Mprm in reply to bluenet

Good information. I have a set of exercises that I got through PT for my back, but always open to further help.

bluenet
bluenet in reply to Mprm

I like that they are videos, so I can see exactly how to do the exercises, and they always say, if you have too much pain doing them, STOP.

Lem1
Lem1 in reply to bluenet

Nice. Yes , it is good to have some instruction via video. Thank you!

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.

marcyh
marcyh in reply to Lem1

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

Lem1
Lem1 in reply to marcyh

Thank you! How would I access the forum ?

marcyh
marcyh in reply to Lem1

Search HealthUnlocked under palpitations. If nothing comes up, try atrial fibrillation. You may not have AF, but it's still a good place to ask about palpitations,

Lem1
Lem1 in reply to marcyh

Yes thank you!

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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