Lymphoma worry

[BeDearFox]

I’ve been unwell for the majority of this year. Severe fatigue (sleep 12+ hours and still need more in the day), physical exhaustion, nausea, loss of appetite and subsequent 1.5 stone weight loss, itchy/prickly skin 24/7, dizzy spells, chills, night sweats, pain in lymph node areas. I can’t live my normal life at 37 years old.

I’ve had a chest xray and CT of my abdomen. MRI of my head and brain. Paid for Trucheck blood tests that detects every cancer almost apart from leukemia and lymphoma. The doctors sent my blood to haemotology who did a blood smear which showed some Rouleaux formation.

as my platelets(?) have been raised since I’ve been unwell, they have asked for me to have the JAK2 blood test.

I keep saying to doctors this sounds like lymphoma but they are adamant it is not and it would’ve shown in my blood or in scans? So I have to wait for the JAK2 results or they mentioned maybe chronic fatigue.

anyone out there been through similar? I’m desperate.

Have checked for Lupus? Or Lyme disease?

@Greentreesandbushes I don’t think so? I did think that as a rash came up over my nose the other day but it went in about 48 hours

The blood smear would have identified leukemia or lymphoma and you said that was fine so it’s not them.

Did they check your LDH levels in your blood test? This is often a great indicator of lymphoma

@stormabrewing no they refused to as said it’s a specialist test. They checked CRP though which was <1

I had something similar at about age 25. I was off work for three months, couldn't live my normal life. Had all kinds of tests done. Found various levels of inflammation but no cause.

I was advised to treat it as ME and did eventually get better via graded activity, rest and diet.

After Covid, friends with long covid described exactly the same symptoms.

Was yours precipitated by any illness? Mine started after a UTI and norovirus in rapid succession. I was dizzy with the norovius and didn't regain my balance and strength for three months

I will say although I went back to work after 3 months it was hard and I wasn't fully better for about 2 years.

Every time I get ill I worry it will happen again, but so far it hasn't. I'm healthier now: at the time I was living quite a go-hard life with long working hours and lots of drinking alcohol.

Have you been tested for hypothyroidism, mine presented exactly the same

@LostittoBostik what symptoms did you have? x

I appreciate your symptoms are similar to those for lymphoma. I've had lymphoma and an elevated white blood cell count is how the diagnosis began (very common) and whilst lymph nodes were enlarged there was no pain. They were rubbery, rather than hard/soft. Also it was specific nodes that were enlarged and on one side. If you experience something on both sides of the body then consider it may be more a systemic issue. I say this to put your mind at ease in terms of a cancer, though I know things vary from person to person.

@janeavrilavril Thank you. How high were your WBC? Mine did go up to 11.2 but went back down. I feel like I’ve got every symptom other than an obvious huge lymph node. How are you now?

Rouleaux formation is a really non specific finding in lots of inflammatory conditions and transient things like viral infections .
WCC of 11 is the top of the normal range so not suggestive of a lymphoma/ leukaemia.

I wonder if this is long covid or similar post viral illness ?

It was over 20 years ago @BeDearFox so I can't tell you what the WBC was at that stage, but it was the foremost reason along with palpable lumps in the neck and armpit, that I was referred onwards. They didn't just normalise again either. Sometimes it can be difficult to feel under the armpit swollen nodes so try to put pressure in underneath and rotate your fingertips, you wouldn't miss them.