New lumps arriving advice needed please im scared.

[Alanclldiagnosed]

I have had new lumps come up over the past week in my neck and under my armpits.im scared this is all too new and my next appointment isnt till may.Is this normal to get more lumps appear im panicking please can someone advise me what i should do i have visited my gp to be told they will write to my heamatologist to try and bring my appointment forward.

[Newdawn Administrator]

Hi Alan,

I see you are fairly newly diagnosed and may have the SLL presentation which means it will be more usual for you to have these lumps and bumps appear. They are normal with this condition and no reason for you to panic although we all understand how scary it can feel. I’ve had a neck and jaw like Squirrel Nutkins with swollen lymph nodes for more than a year prior to treatment.

Take a look at the explanation from Macmillan below in the link I’ve posted. It also has links to help lines.

Hopefully by your GP writing to your haematologist, they may bring your appointment forward to reassure you. In any case, there really is no need to panic. You may have infection which causes the lymph nodes to swell or it could be the natural progression of your condition. It may reduce but try not to prod the area and obsess. I’ve certainly done that and even caused my spleen area to bruise badly!

macmillan.org.uk/cancer-inf...

Try to calm yourself. There’s really no need to cause yourself so much angst. I’m afraid lumps and bumps are pretty much part of the CLL/SLL terrain.

Best wishes,

Newdawn

[Alanclldiagnosed in reply to Newdawn]

Thankyou for this im just so scared but i will try to relax and calm down.

[MistyMountainHop in reply to Alanclldiagnosed]

Hi Alan,

I'm in London and my hematologist is at Guy's hospital.

I was given contact details of a lymphoma nurse, if I had any issues.

At what hospital is your hematologist based, were you given contact details of a nurse if you had any issues, (if not, contact your hospital and ask for a nurse)?

When I was first diagnosed (14th April 2014), I panicked like crazy. I thought I was going out of my mind (I was a wreck for the first 6 months). But here I am, ten years later, (still on watch and wait) without needing any treatment, so far🤞.

Oh, and by the way, I have swollen lymph nodes....below my ears, all around my many chins. They swell up, they go down......they have a life of their own.

[Alanclldiagnosed in reply to MistyMountainHop]

Thankyou i have her number but without sounding horrible i dont understand a word she says her english is very poor and i only speak english my hospital is heartlands in birmingham.I just havnt been given any best advice or what to expect from anyone i have seen at the hospital so far.I am still getting up everyday going to work coming home feeling exhausted is fatigue part of this as from about 11 am im already worn out.

[MistyMountainHop in reply to Alanclldiagnosed]

I totally understand how you feel. I was told I had CLL, but nobody explained what it was, which was really frustrating, and made me incredibly angry.

It might be a good idea to ask your doctor, or hematologist for an appointment, so that someone can give you an explanation of chronic lymphocytic leukemia is......

Send an email to your local councillor/MP, if don't get a satisfactory answer from your doctor/hospital. Don't be frightened to email anyone.....

it's your life, make a noise!

Alan, I wish you well, and I hope you find peace of mind, sooner rather than later.....

[SofiaDeo in reply to Alanclldiagnosed]

My sinus lymph nodes get aggravated very easily & I have problems hearing sometimes. I have found if I tell people I can't hear well, please repeat slower, that helps. "I'm sorry, my sinuses are acting up & I can't hear well, can you repeat that slower, please?" Even when it wasn't my sinuses, it was them

[DoriZett in reply to Alanclldiagnosed]

Sller here - the lumps can be scary but are most likely not of urgency. I called it my "Jabba The Hutt" period during my most extreme lymph node enlargement. I am chubby anyway but it looked like I had no neck. Also palpable nodes in my armpits and groin. Very scary at the time - but once treatment started - the visible and palpable nodes melted away within weeks. Internal ones took longer to "melt" back to a more normal size. If you feel all right - then there is less urgency for your physical health, but getting your appointment moved up, and your questions answered, will certainly help with your mental health. All the best to you.

[Richard_TX]

I had enlarged lymph nodes and started treatment with Brukinsa and they all but disappeared within two weeks. In fact my urine stream was really weak and after 5-6 days it was back to normal. My white blood cell count was at 201.8 when I started treatment on Brukinsa and after 7 months it is now down in the normal range. I've had zero side effects and feel great. If your Dr's decide to treat you with Brukinsa those lymph nodes will seem to shrink overnight.

[Poodle2]

Very reassuring advice from everyone. Calling your specialist nurse is always a good one to do. They are brilliant at reassuring and explaining what to look out for in terms of worrying signs. If you do not have their number, definitely ask for one next time.

[Floxxy]

This happened to me a year ago. I contacted my CNS who spoke to my oncologist. They monitored me by phone for 2 weeks. I then saw my oncologist who arranged for me to have blood test and a scan. I'm now on second line treatment, V and R. All lumps gone. X

[GettinThruIt]

You’ll live until they get you on meds no problem. Then once you’re on meds like everyone is saying you’ll be good. It’s a lot but we’re lucky to have a very treatable condition.