Cll pain

[dcfrey645]

Hi....has anyone experienced chest back and throat pain with CLL? Feels like a muscle spasm.....I have many large lymph nodes and just started treatment....I had these episodes before starting treatment but was severe last night. Thanks

[Hidden]

I found out my CLL diagnosis because I was having increasing back pain and thought it was my arthritis... I have always been very active and this is really annoying me, if I try to do any small project like paint the chicken coop, I have so much muscle pain that it's just not worth trying. Relaxing things like swimming help though, and daily yoga stretching.

[cllady01 Former Volunteer]

What is the treatment your are on?

[Ironj]

I get throat pains on in one side sometime it feels like a knife or a painful squeeze. I also get episodes like my airway gets cut off for a split second that’s unrelated to the pain in the throat. I’ve had this for years prior to my SLL diagnosis.

[Enice in reply to Ironj]

Hi Ironj, I have had similar experiences but mine were related to an enlarged thyroid glad. I didnt even know I had it because it was growing inwards. I worked too hard then, and would feel like I choke at night, cough it off, sweat alot and be so fatigued in the morning. Thats how I was diagonised with thyroid 12yrs back. Later I lost my dad and this feeling got worse about 6yrs back, it felt like a lump under my thyroid, a psychatrist informed me that I was stressed, grieved working too hard bla bla... so I took work easier, vacationed more but the feeling remains to date. Atleast once a week I will cough out in the middle of the night. Now my thyroid is more enlarged outward, I have enlarged nodes round my neck but I never feel fatigued. Its hard to tell which came when and what causes what. Enice

[Ironj in reply to Enice]

Symptoms are strange as they just start and come and go. What makes it worse you’ll ask your Dr and they just kinda pull possibilities out of there hat. My psychiatrist says I have Globus hysteria casing a lump in the trough and pain. But no one can tell me why I feel like someone karate chops me in the throat causing me to loss my breath for a split second. This is why I spend hours investigating symptoms to be my own advocate.

[ReneeSusan in reply to Ironj]

Ironj, I had the same symptoms and it took a year before it was diagnosed correctly. I was even diagnosed with sleep apnea and on cpap. It turns out after going to 4 Ear nose and Throat specialists, it was a lymphoma mass in my nasopharynx. It was removed and I was treated. Same symptoms 7 years later, large node deep in my neck had to be removed. It was pressing against my larynx growing inward, not out, so oncologist thoughts I was exaggerating. Turns out Lymphoma resurfaced and I am now in treatment again. If you feel something’s not right, fInd a doc who will listen and not blame it on emotional issues. I had one doc ask my husband if I complained a lot during an office exam. I promptly walked out and found another doctor!

Renee

[Ironj in reply to ReneeSusan]

Thank you for the information and I’m happy you got it figured out. Were you getting episodes kinda like a hiccup where your breath was taken away for a split second ? Sometimes it will just hit me one time then I’ll have one every minute for an hour then it will go away for a few hours to a few days or months. This has been going on since I was about 30 years old about 18 years. I was diagnosed with SLL in 2018. I sure hope I haven’t had sll that long 😨. But I did go to an ENT a few years ago he put a camera up my nose into my throat and said all looked ok. I also had a Pet scan last year nothing shouted up at least they never said anything was wrong in that area. But this comes and goes and I never told my specialist about this issue. October I have an appointment with my specialist I’ll bring it up with him then.

On another not I seen you went to the ER and they found nodes in your pelvic area. How are you feeling now ?

Best wishes John

[amberhead]

Yes... i have all of those. Chest pains can be so severe I thought I was having a heart attack! The throat pain i would describe more as ear/neck pain for me at least, it shoots down my neck from my ear like a severe ear infection would feel. The nodes under my jaw were so swollen before treatment though they felt tender to touch and often like when you are "getting sick" painful. The back pain makes me feel like i am literally being stabbed in the back. They range from mildly annoying to make me cry pain. It was worse before i got treatment and seemed to be as bad for about six months after but they have stared to decrease. I still have bad pain days where i feel attacked from all sides (literally) but then i go days with none or only a few so treatment did helped (as before treatment it was DAILY that i was in tears).

[dcfrey in reply to amberhead]

Thanks for the reply. This last attack was pretty scary. Glad you are doing better.

[Stelladoro]

Wow I think your Dr. Needs to be notified....I hope you dont have any more nights like that!

[dcfrey in reply to Stelladoro]

I did speak to my Dr. and he has heard of similar incidents but insisted if it happens again to go to the ER.

[Smakwater]

dcfrey645,

Prior to treatment, I began experiencing roving pain that would come and go. One of the areas that the pain seemed to frequent was the tissue on the left side of the neck and the right front of the throat near the thyroid. The aggravation would sometimes intensify and radiate around those areas causing great discomfort.

Although, I have no clinical evidence supporting the fact that it was CLL influenced. I am post therapy 11 months, and that pain is completely gone as is most of the other pain aggravations that started and increased from the time of diagnosis until I was treated.

JM

[dcfrey645 in reply to Smakwater]

Good for you. Hope continued good health. I start in 1 week on venoclax and I'm really scared. Hopefully I escape any side affects.

[Smakwater in reply to dcfrey645]

Although we are all individuals and subject to respond as such, I hope that your treatment will be as smooth and effective as mine has been.

For me, the side affect profile has been for the most part without consequence.

I am very pleased with the results so far.

Wish the best for You,

JM