I'm new here and have painful lymph nodes!

[Clodhopper]

I was diagnosed with CLL almost two years ago and my oncologist is watching and waiting. The lymph nodes in my arm pits fill my rounded palm. Just a few days ago I woke up with them feeling tender. Now they hurt most of the time. Any suggestions on what to do to help with the pain?

[Cllcanada Top Poster CURE Hero]

Hi Clodhopper

You need to see your CLL doctor for an evaluation... they may wish to do some diagnostic testing...

You might get some relief from a home remedy, of castor oil packs, but it is not an alternative to prompt medical attention...

More here

healthunlocked.com/cllsuppo...

~chris

[Bubnojay]

Hi clodhopper

I note you say oncologist and just wonder if you are seeing a haematologist specialising in cll. It is haematologists who specialise in cll being as it is a blood disorder. Oncologists specialise more in solid tumours though a few cross over sometimes.

You do need to contact your specialist as your discomfort will make you anxious, though some here have had similar experiences you need to be sure you are being monitored, and have a contact within your team to speak to when any concerns arise.

Some here have found that warmth applied helps ease the discomfort. Do hope your situation is soon resolved. As I am working on my iPad one hand being temporarily out is order, I apologise that I have not read any previous posts as I would lose this message to you. So hope this message is appropriate.

Please let us know how you get on.

Best wishes

Bubnjay1

[Kevin54613]

Sounds like watch and wait days are over for you, tell your doctor to start Imbruvica to relieve your lymph node swelling.

[HAIRBEAR_UK Founder Admin]

Hi Clodhopper sorry to read of your discomfort definitely consult your medical team for advice and investigation. You may be a stage where an intervention is required but that is something for your specialist to evaluate and you to consider with them if that is the case. If an intervention/treatment is required testing and the knowledge of your specialist will be able to determine what treatment is most appropriate.should it be required. You have had some sound advice about potential home remedies that may relieve discomfort in the short term, it could be that infection has aggravated things but please seek medical advice. as Bub mentions CLl is normally treated and managed by Hematology oncologist and will have specialist CLL knowledge.

[starsafta]

I concur with others who have suggested seeing a hematology-oncologist who specializes in CLL if you are not already doing so.

I feel for you, because I also had very swollen nodes in my armpits prior to beginning Idelalisib treatment in 2014. Because of the location, there is little space for them to "live" without putting pressure on adjacent tissue they are crowding. It's really uncomfortable.

You don't say if you also have swollen nodes in other parts of your body. It is important for you and your medical team to know if there are others, what their sizes are, and where they are located. For me, CT scans revealed a plethora of swollen nodes throughout my neck, some large and protruding, others hidden and not palpable. There were very large palpable nodes in my armpits and on the occipital lobes at the base of my skull, and clusters of 48mm nodes in my abdomen, some pressing on my bladder, others pressing on the ileocecal valve, interfering with the flow of digested food from the small to large intestine. Combined with a bone marrow biopsy that revealed it was 78% CLL cells, and blood labs that showed I was anemic because there was no room for red blood cells to form and grow in my bone marrow, all the tests combined indicated that it was time to begin treatment.

I was in "watch and live" for two years, during which time my symptoms and labs moved slowly. Some people stay in that stage for many years. For me, they began speeding up more quickly. If you haven't had tests, you might want to consider seeing your CLL specialist to see if tests are indicated at this time. They are the only way to assess what is going on and whether treatment is indicated, as well as which treatment would be best for you at this time for your age and level of involvement. Fortunately, we are living in an era where there are many non-chemo drugs available to us. They are very powerful drugs, and it is important that your doctor is a CLL specialist who is well versed in how they work and what information you need to know about dosage, compliance, diet restrictions, and potential side effects and what to expect. My first treatment was in a clinical trial that administered Idelalisib and Ofatumumab, which worked for about 15 months, and then my clever CLL cells developed resistance. Now I'm taking Imbruvica as standard treatment, and am hoping it will keep working for as long as it can.

Note my term "watch and live." A few of us are trying to get rid of "watch and wait." What does waiting mean? Waiting for the ball to drop? Who wants to sit around constantly looking for things to get worse? We would rather feel as if we go about living our lives as normally as possible -- maybe even better because we are even more aware of how fragile it is. Even if we're in treatment, we can still do what we can to live the fullest life we possibly can.

Sometimes, the stories we build in our minds from aches, pains, and symptoms can get the better of us. Getting proper tests and opinions from experts can turn uncertainty and fear into feeling more at ease. Knowledge goes a long way toward empowerment.