In pain..

Have CLL, stage 2 intermediate stage.. had recently PET Ct scan done, all organs fine, my Oncologist Dr, told me through out my body I have Lymphoma, right now, it's been non stop major pain in right side groin area for last hours.. is this related or is this maybe something else? The pain is not subsiding, on going! I appreciate any feedback, thank you. I was diagnosed about 3 weeks ago by blood test, have night sweats, major fatigue, always feel angry, mad irritable, weak, tired all the time lately, nausea a little, sick a few times, loss of weight, headaches, no real appetite, eat little through out the day, light headed, dizzy, Is this pain in the right side of the groin related, lymph nodes are big and a lot... again thank you!

[wroxham-gb]

Best thing really for you would be to get to a doctor. Right side could be gall bladder? That can give awful

Pain , cause sickness.

I would seek medical help asap as you state the pain s so bad and not easing.

Please let us know how you get on.

Best wishes.

Sue

[AussieNeil Administrator]

CLL is a lymphoma, specifically one of many Non Hodgkin Lymphomas. Rarely, swollen lymph nodes can cause pain when they press on nerves and the groin is a sensitive place with lots of nerve endings.

It is possible but very rare to have CLL and another leukaemia or lymphoma, but you should clarify this with your oncologist for your peace of mind. You should also tell them about your distressing symptoms. Night sweats, major fatigue and weight loss may trigger your need for treatment if they don't resolve. Has your oncologist discussed possible treatments with you? You haven't shared where you live. Doing so will help other members suggest specialists near you that may be able to provide you with more support (including a greater range of treatment options if required). You can edit your post and make it private to this community by selecting "Edit" when you select the 'v' under your post.

Neil

[Hidden in reply to AussieNeil]

I did tell my dr when I saw him recently, I don't see him until the 10th again. He told me, after seeing the PET scan, that through out my body little bumps, that yes I have Lymphoma, he was going to keep an eye on things.. and told me that the loss of weight, night sweats are nothing to do with the CLL symptoms I'm having?... I'm sorry, I am all new to this, but I have lost 22 lbs in the last 2 mo, I'm 5 ft 7, I believe it maybe the CLL, he told me to contact my primary dr, so I have an appointment coming up soon, next week. Maybe it is something else?? I eat when hungry, I'm not starving myself, don't want to lose weight, need energy, I'm a positive person I will let my primary dr know what my Oncologist dr said, as well as maybe the gallbladder?.... I appreciate your feedback greatly thank you for writing. This is all new to me...diagnosed about 3 weeks ago. Thank you

[AussieNeil Administrator in reply to Hidden]

Night sweats and weight loss are classic lymphoma B symptoms, which includes CLL: en.wikipedia.org/wiki/B_sym...

If your doctor can't find another cause for your pain and your oncologist dismisses these symptoms as not related to your CLL then please find a specialist that has expertise in CLL.

Neil

[Hidden in reply to AussieNeil]

Thank you! I defiantly will.

[Hidden]

Thank you very much. I have an appointment next Tue. With my dr.

[PlanetaryKim in reply to Hidden]

Good luck Ames! I agree with Neil. I find it very strange that an oncologist would say your night sweats and weight loss have nothing to to with your CLL, when in fact they are classic symptoms of any lymphoma including CLL. Hallmarks, really. One thing to remember is that oncologists, although ostensibly versed in all cancers, are really mainly experienced with solid tumor cancers, not blood cancers like CLL and other lymphomas. So it is indeed best to find yourself a CLL specialists, and a.s.a.p., even though you may have to travel out of town for it.

kim

[Hidden in reply to PlanetaryKim]

Thank you Kim

[Newdawn Administrator]

Sorry to hear you're suffering like this Ames and glad to hear you're seeing your doctor soon. Sounds to be very low pain to be gall bladder related as that is usually higher in the abdomen even radiating to the back and shoulder. Certainly did with me.

Your doctor's response doesn't impress me to be honest and I agree with Neil that you would benefit from a CLL specialist.

This pain could have so many causes but it needs investigating. The nodes could be impacting on nerves, it could be kidney stones, gynaecological, ligament injury or even a grumbling appendix. Only proper diagnosis will reveal the cause and I really hope you manage to get that and soon!

Best wishes,

Newdawn

[MsLockYourPosts Passed Volunteer]

Appendix is on the right. Kidney stones would be another possibility. If the pain is severe and not resolving or getting worse get into a doctor ASAP. Another vote for, at the very least, a hematologist! My first oncologist had no idea what he was doing treating CLL.

CLLsociety.org has a list of patient recommended doctors from many countries. If you give a general idea of your location others here may be able to help you find someone who knows CLL.

[Bubnojay]

In my experience, oncologists rarely know much about CLL, they are solid tumour specialists. Your symptoms as advised by previous posts are typical of CLL. CLL is throughout our bodies, it is a blood disease found in bone marrow and wherever the blood flows.

You definitely need a haematologist CLL specialist, used to dealing with all lymphomas, and when you see your Doctor I'd ask for an immediate referral.

Perhaps if you can share a city you live close to, our members can advise one close by to ask to be referred to.

Good luck, wishing you a speedy appointment to reassure you.

Do let us know how you get on.

Bubnjay1