I`m new here, with low grade CLL diagnosed in July2019.Generally well and on Watch and Wait so was surprised to get Govt letter dated April saying to stay at home for 12 weeks.
Question-how to check if groin lymph nodes problem -seem a bit more fluid around area and not sure about seeing consultant face to face in July rather than telephone as currently planned
Welcome to our community Skyblues,
Unfortunately, one of the challenges of learning to live with a CLL diagnosis is accepting that we are immune compromised. That happens even as CLL is developing and before our diagnosis. Here's the advice from world recognised CLL specialist, Dr John Byrd in the CLL Society COVID-19 section
cllsociety.org/2020/03/cll-...
This article is specifically about the UK shielding provisions:
cllsociety.org/2020/05/uk-s...
There's more about CLL and COVID-19 here: cllsociety.org/covid-19 and here: healthunlocked.com/cllsuppo...
With respect to your concern about your groin lymph nodes problem, this coincidental post may be of interest:
healthunlocked.com/cllsuppo...
Provided your groin nodes don't continue to worsen, it's probably not a concern, (I'm not medically trained), but you should arrange a telehealth consult with your GP/PCP if you remain concerned.
Neil
Thx AussieNeil. V Useful reply + links.
Hi Skyblues. For me, my groin nodes (the inguinal lymph nodes) are always really easy to feel if they are enlarged. They are very close to surface and for me would sometimes be size of walnut in shell (that would be a group of nodes together). They are always the first thing I check if I am worried about CLL progression. Neck nodes not as reliable because they can often be slightly enlarged due to sinus, allergies, sniffles, sore throat, dental issues, any number of things. But if I can feel the groin nodes, then something is going on CLL-wise.
Well for me just recently I was bothered by axillary lymph nodes and some it felt in my breast tissue!! So off I toddled to the GP. Who of course wanted mammogram and USounds done. More worried about B cancer I think. Scan showed rather enlarged nodes in axilla. Nothing in the breast.
Later I had a consultation with my Haem. Who ordered another ultrasound and then a Fn biopsy which showed active CLL cells. This is after 7 years post chemo. I was a bit worried for a while. But... it is a chronic disease so slow progress. Get on with life etc. I
And..Hurrah.....recently I found at long last a CLL specialist in Perth WA Oz that is. I decided to get a referral to see him ie. second opinion etc. I’ve never had one. My appt came to pass during the covid 19 isolation time. So we had a Telehealth consult. Me on my iPad! And I felt really happy.
Night time in Oz
good night all
Sheila In Fremantle
I had the Gov letter to shield for 12 weeks and am also on watch and wait. I note from the various pieces of information that blood cancer at any stage seems to trigger that. I imagine (in my normal person way trying to understand CLL and how it relates to Covid-19) there are two factors. We have increased white blood cells but they aren't good ones so they are not so good as 'soldiers' against infection. The fact we have extra white cells means less room for the red cells to take oxygen round our body and as the need for oxygen seems a factor in those most ill, the fact our blood may be less good at getting oxygen round the body may be something they worry about. I think I would still opt for an online consulation. They will be able to ask the right questions to determine whether they need to see you in person and it seems that non covid medical areas seem less busy and you should be able to get help quickly if necessary. But I underline the fact I am not hugely knowledgeable and I just seem to get to grips with one fact at a time.
Hope all continues well for you.
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