Today I woke up with the lymph nodes under my ear enlarged. They have been enlarged for a while but today they are a bit bigger and very tender. I got my flu shot and pneumonia shot on Monday, do you think that has anything to do with it? I am not on any treatments. Still w&w. Thank you!
Mary
No one can say for sure, but yes, I think it’s possible either vaccine might have contributed to your nodes swelling up a bit.
My experience with nodes was that they waxed and waned a bit for no apparent reason, but that they did overall progress from one year to the next. Mine disappeared very fast after I started ibrutinib.
The nodes were bothersome to me, not so much that they stayed painful but rather because I knew they were there and served as a constant reminder of my Cll. I didn’t want to have to start treating, but having my nodes disappear was a big bonus for me.
Thank you. I have one on the my neck that is the size of a pea and it doesn’t bother me but these are not like that. I agree, the constant reminder of CLL is draining. My numbers are rising and I just found out I’m mutated, so treatment is probably in my near future.
If by mutated you mean IGHV mutated, that’s good and, on average, would predict longer time to treatment.
Sorry, I am unmutated.
Well if you end up taking ibrutinib as a first treatment, your mutation status might not make much difference. People with unmutated Cll do very well on ibrutinib. Unmutated IGHV with 17p Cll doesn’t do quite as well, but some with 17p can go many yrs on ibrutinib too.
What’s really great about ibrutinib is how fast it chases Cll cells out of the nodes and spleen into the bloodstream.
Thank you! I don’t have 17p but I’ll do have trisomy 12. I listened to everyone’s advice and found a specialist and was lucky to see Dr Matthew Davids in August. He said with the new treatments today that the playing field was even with mutated and unmutated. I do have a question for you, I just got my blood work back and there are Blasts and Absolute Blasts that I have never seen before. They are suppose to be zero and I have .5 Blasts and .3 for the absolute Blasts. My absolute lymphocytes are 56.14. Thanks again.
Hi Canjunjeff, do you get the IGHV value from your fish test results? I can't find the IGHV in any of my blood test. Is this a test I have to ask my oncologist specifically to run?
Same here. I’m eager to find out as well.
FISH does not provide results of IGHV mutation status. Mutation status testing is not always ordered by some doctors. It’s fairly standard practice in major cll cancer hospitals.
You can ask your doctor to order it. My guess is some would agree to order it and others not, but most general oncologists would not even be that clued into IGHV mutation status.
Hi McBuster, I wouldn’t rule it out. When I took my flu and pneumonia shots, l developed a rash, fever, fatigue and flu like symptoms. My rash is still ongoing but, I feel much better now and glad I did take the shots. 🙂
Win
Mary, when I had my pneumonia shot the lymph nodes at the back of my head became swollen and gave me a throbbing headache - even painkillers were not doing anything for me! It was awful! It lasted for about 2-3 days, then I was pain free but it took nearly two weeks for them to go back to normal. They did my bloods to rule out an infection and nothing was pointing to that. My specialist nurse was 99% positive it was a reaction to the vaccine. I'm sure that's your case as well. Just rest and take it easy. I had some fatigue as well. I had the flu vaccine separately and that did not cause any problems at all.
Hi McBuster,
When I was W+W for 5 years I ALWAYS reacted to flu shot with fever to 102, rash at injection sites, body aches, enlarged lymph nodes mainly in axilla along with neck and ear areas. Fever lasts 2 days , rash last 1.5 weeks with body aches and flu like symptoms lasting 2 days.
I am now in clinical trial for ~ 2 months, I+O, just had flu shot, same nasty symptoms except no lymph node involvement. I treatment really reduced lymph nodes to almost imperceptible.
Honestly, hate taking flu shot every year due to bad flu like reaction , but am and will continue to be compliant and follow my MD’s recommendation.
I am 68, tried different flu shots, 1 is a high dose for > 65, another has regular dose but has a adjuvant that gives a greater immunological response, both made me feel like I had the flu so now I just take what is available and tough it out. My thinking was maybe I had a bad reaction to adjuvant, but both flu shots are not fun. I tell myself if I react this bad to flu shot, no way do I want to get the real flu.
I can relate to lymph node changes, since I have had them for years. I'm about three years on watch and wait, and I always have one to three small lumps on my right side of my neck, one or two on the left side, one on the left right at the collar bone, and one on the left side of my lower scalp back of the head and another on the same position on the right side of the scalp. They seem to go up and down in size, with the ones on the side of the neck being the most active in size changes. sometimes when things are at their best there is one lump on the right and barely one on the left. The one just below the clavicle keeps getting larger.
Last year my wife and I took a trip out of the country and I got sick when we landed in the Philippines. The neck lumps both sides started to grow. After our first week of the trip had concluded the two on the left side got twice the size to three times than the one on the right which is always there. It was really big and hurt a lot to touch. It freaked me out and I sought out a doctor in Abu Dhabi. She said I had a bad upper respiratory infection, although clearly not a pneumonia, and gave me antibiotics. Through our second week of the trip I got a little better and the huge painful lumps began to get smaller. Finally at some point after we got home I remember they subsided to normal size.
I have had the lumps on the right side mainly go up and down in response to me feeling like I was fighting a cold or fighting anything. It is clear to me without a doctor telling me so, that the lymph nodes get enlarged and appear and disappear depending on how sick I am. Today I am not sick and havent been for a while and I can feel only the one on the right that is always there, and the big one just below the clavicle on the left side of the neck, and the tiny ones behind my head on the lower scalp. Of course there are hundreds in my abdomen and elsewhere inside that I never can feel by touch or see.
You should always consult your CLL Specialist when you get a change in the appearance of lymph nodes, but likely you are just fighting a cold.
Yes I think it is. If it is the pain should go away in 5 days. If not make an appointment with your oncologist to make sure Your CLL is not getting any worse. Stay safe, Anna
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