Hello everyone
My wife has been diagnosed with Cll five years ago and now she has multiple very large (3 inches ) nodes in her neck area that are really uncomfortable.
Her hematologist prescribed 5 days of prednisone 80mg but she had to stop after 4 days
The swelling went down a little but she’s worried it’s now going to come back with a vengeance and choke her .
My question is blunt but could enlarged nodes eventually lead to suffocation or slow blood flow to the brain?
Unlikely, but I have known patients with swllowing issues, but if she starts feelng ill or dizzy, then she should be prepared to go to emergency...
My node involvement is around my heart, and enlarge nodes effected the ability for my heart to function, so CLL treatmentbwas started based on CT scan results...
Why did she stop the prednisone? I would get a second opinion from a CLL specialist in her case, as soon as you can manage one...
~chris
Thanks
Her hematologist told her to take prednisone for 5 days only
She’s due to start Ibrutinib in January
Just hoping she can hold until then
I had swollen lymph nodes in my neck which made swallowing difficult, caused crippling headaches, and put pressure on my inner ears making me dizzy and blurring my vision. This is what sent me to the doctor thinking I had some sorta flu but it resulted in my diagnosis of CLL Stage II unmutated and they rushed me right into urgent treatment. Once starting treatment with ibrutinib and Gazyva, my lymph nodes and spleen shrank immediately. I don't know if this can suffocate a person but I would definitely work closely with your doctor on finding a solution.
Bonjour Sergi!
Is your wife experiencing headaches , ear problems , sinus problems or difficulty swallowing?
3 inches is not so big. Mine were 8 inches and started to block airways and coughing during my sleep that’s why I started treatment.
When I relapsed from FCR the node came back on same spot where it all started. That is my stubborn area I guess. They too put me on prednisone and did nothing for the shrinking so they put me on imbruvica
Yes
She’s definitely starting to experience headaches,pressure on the neck for the past 2 weeks....can’t look at her suffering any longer
This is probably a dumb question, but couldn’t they just cut out the lymph nodes when they get really big? I’ve been on w&w for about a year and I have a big one on the inner part of my leg that I’d like to get removed. I see Lola69 (lower in this thread) had 8-inch nodes. Holy cow.
Why take the risk of surgery? Start Ibrutinib now!! No point in waiting. I don't understand why doctors wait when patients are in distress!
Hi Sergi, yes, it's pretty scary isn't? My lymph nodes around my head and neck were very prominent and were pushing on some nerves causing discomfort, I had ear pain. I convinced a radiologist oncologist to do "low dose radiation" to the troublesome areas and each area got 3 doses. The neck and nape area were the first to be done with excellent results. It turns out that lymphocytes are extremely sensitive to radiation.
Only in the US I found doctors who were willing to use radiations ,her French hematologist is against it 100% , too much going on in the neck to risk it
I had radiation treatment for a large lymph node in my neck. I was told the dose was so low that there was little health risk from the radiation. Was irradiated twice. Absolutely no impact on the lymph node. Proceeded to FCR treatment which rapidly reduced the size of the lymph node.
Hi, did you react well to the FCR I hope?
Yes. I'm two months post treatment, all the swollen nodes are gone according to the scan. My blood is slowly returning to normal. Too slowly for my taste, particularly the hemoglobin, but getting better nonetheless.
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