Lymph node pain?: Hi everyone,  I am on W&W and... - CLL Support

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Lymph node pain?

BCTexas profile image
10 Replies

Hi everyone, 

I am on W&W and every now and then I feel pain in my groin area. My lymph nodes are swollen in my neck area and my groin. I get sharp pain sometimes in my groin area and I was told by my doctor this was because of my swollen lymph nodes. Has anyone else experienced this? My numbers are OK but this discomfort makes me think that treatment may be necessary soon? Or is this something we put up with to put off treatment for now?

Your fellow CLLr...BC

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BCTexas
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10 Replies
fish61 profile image
fish61

Hey BC Texas,

I live in Houston , where do you live ??

I had a bad pain in the groin and I was in my Md's office for another matter , so I mentioned it to him and he insisted on a CT scan . Needless to say he sent me to MD Anderson where I was put on W&W for a year as I had CSLL/CLL .

In my case, my groin hurt but I was not put on treatment until my bloodwork was cattywampus.

Are you seeing an oncologist yet ?   Fish 61

BCTexas profile image
BCTexas in reply to fish61

Hi,

I'm in Conroe,  TX.

I am seeing an Oncologist on W&W. I see my Oncologist every 3 months. I was diagnosed last September stage 2. 

So I guess it better to put up with the occasional pain than it is to start treatment. I would rather be on W&W for ever if at all possible. :) 

I plan on going to MD Anderson at the end of April for a second opinion on what they think I should be doing.

Glad to know that I can talk to someone with CLL locally. This site has been a blessing and helps me a lot.

Best Wishes,

Brent

fish61 profile image
fish61 in reply to BCTexas

I was put on a clinical trial because I did not want to have the injectable Chemo.... At the time Ibrutinib was the best pill form of Chemo  (or whatever it is ).. I took 3 pills every day and the pain in my groin was gone in 3 weeks ,  18 months later , after taking 3 pills a day I was told that I am In remission...send me your email address as there are some things I want to tell you about MD Anderson... all good ..  I know the place and have some suggestions .. I had good guidance there by a friend that had Leukemia ....she told me what to do and what to avoid..nothing to do with the medications, just with how best to get around and when to go (traffic ) and when to avoid having appointments.  For instance , rather than going to the hospital to have blood drawn and wait for 3 hours to see the Doctor, you can have your blood drawn the day before  in The  Woodlands..Fish 61

SouthFloridaLady profile image
SouthFloridaLady in reply to fish61

We get by with a little help from our friends! Thank you, Ms. or Mr. Fish. 

Bethan49 profile image
Bethan49

I too get this. .not can be a sudden sharp pain in my groin and I have realised it is brought on by different movements. I now consciously  try not to do certain things. For example, the scissor Action you use to move a swivel chair causes me pain...I feel faint for a few seconds and then it passes. 

Not nice... keep you pecker up!

BarbaraA2 profile image
BarbaraA2

Hi l have the same problem except my lymph nodes in my neck, chest and arm pits are very swollen. My wbc are 22000. When I went for my mammogram the doctor asked me if I ever had CLL. And as a matter of fact I was diagnosed with it last year. Going back to the hematologist in 2 months instead of 4 months. I live in western mass and they are starting a blind trial on younger and never been treated before. It's either ibutinib or the the regular chemo pills. Not sure if I should just keep waiting for more drugs to be approved before being treated.

BCTexas profile image
BCTexas in reply to BarbaraA2

I know what you mean.

Best wishes,

BC

SouthFloridaLady profile image
SouthFloridaLady in reply to BarbaraA2

Dr. Jennifer Brown at the Dana Farber for a second opinion!

fieldmeadow profile image
fieldmeadow

Due to swollen lymph nodes I, too, had some pain in the left side of my groin and in my neck. This was due to the enlarged nodes pressing on nerves.

I found paracetamol (or similar) usually helped. The discomfort in itself did not warrant treatment. I had to wait until my blood counts indicated treatment was needed.

BCTexas profile image
BCTexas in reply to fieldmeadow

Thank you for the reply

Best wishes,

BC

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