Hi Alex,

Welcome to cancer chat. Not able to give you any advice I'm afraid but just saw no one has yet responded to you so thought I would say hello and bump you post back up to the top. Hope all goes well for you. kind regards Brian.

As you're probably aware, Lyphomas are cancers of the Lymphatic system, so may or may not show up on x-ray etc.

Lymph nodes are the 'glands' that swell up when your body is fighting an infection....lumps in your neck/armpit/groin may be nothing more then your lymphatic system fighting off a bug

Blood tests will show if something is 'not right' but probably won't be specific enough.

Next step would probably be a CT scan or a biopsy of the lump.

Been There, Done that....aint so bad.

I'll keep an eye out for ya posting again if you have further questions.

WAIT to see what they say before deciding yourself you have it.

(so many topics here started by someone feeling unwell, finding a lump, then convincing themselves via the wonders of google that they're terminal.)

Best wishes

Hi Alex,

Just wanted to say I agree with 'imabloke', blood test will only indicate if more test should be done. I was diagnosed with NHL a week after I had 2 biopsies taken from the growth in the back of my throat. It was a little awkward because of the location but it wasn't too bad.

I'm just curious if you have heard anything further yet?  I had my blood test about 3 or 4 weeks ago so we may be around the same point of diagnoses.

Hope to hear from you soon.

Karen xx

Hi Karen.

Thanks for posting on this topic & welcome to cancer chat.

I see you're a 'recent' new member to the NHL club.

I'm 5 yrs post NHL now, so if you need anyone to ask ref NHL etc I'll do my best to help out.

Which 'variety' do you have? I had anaplastic large cell lymphoma which apparently is quite a rare one, albeit an agressive type (which apparently makes them easier to treat).

This forum is a good place to find info from people who have 'been there, bought the t shirt etc'...so are well qualified to offer advice etc.

Good luck with your fight

Mark

Hi

I have just been diagnosed with NHL

Grade 1 (slow) satge (4) in 4 places.

My blood showed normal but it seems the biopsy is the way they really can tell.

I am trying to cope with all this too. You need all the tests and of course medical people will tell you.

If I can help I will try.  Some people have symptons, hot flushes itchy skin, lumps, I did not have so much, everyone different.  This is quite a common cancer. Is usually treatable.

Kind regards to you.

Hi Mark,

I've B cell high grade. I dont know any more than that at the mo. Last week while i was in hospital they took a bone marrow biopsy. It was so painful and after 2 insertions they couldn't get any fluid so only got a sample of the marrow. I don't know if you noticed but i mentioned in another post that my tumour is in my throat which is why i spent nearly a week in hospital on the haematology ward and had my chemo started early. They said because they know its B Cell and high grade they can start me on a generic chemo treatment of R Chop. I had a reaction to the Rutuximol (i think thats what its called). The nurse/sister that was giving the treatment accidently gave me too much (50mg in 5 mins). It was an accident and probably my fault for having her gabbing. But my right ear got extremely itchy right inside and it spread through to my mouth (ended up with sores on my tongue through chewing). She stopped the drip for an hour afterwards though and the side effects went away. Its been nearly a week now and the main side effect has been nausea and tonight ive noticed that all but my small fingers are numb at the tips. Its an odd sensation when it doesn't go away. I've got sore patches on my head too, above the temples in my hair, i'm wondering if this is a sign of where my hair will start to fall out? Is soreness usually present before this happens? Does the hair come out randomly or during grooming?

Well i appreciate any advice and hope to hear from you soon

Karen xx

Hi,

Yeah, i remember the bone marrow biopsy well...i think it was one of the most painful things i've experienced..and the cruchy/squeaky/celery type sound you hear all through your body....shiver!!

I'm pretty much bald anyway, so the hair loss thing wasn't an issue for me.

I had CNOP (a version of CHOP, with one slightly less cardiotoxic drug, due to a heart condition i have)...and i didn't have the 'R' bit as far as i know.

basically the drugs are the same though, and the effects are just as bad.

Mouth ulcers that wouldn't heal, the nauseous feeling, and the excruciating 'rear end' on going to the loo for about 3 days after the chemo....seemed like i was passing clear gel which was burning/stinging pain on a whole new level!! (hope you don't get that side effect, wouldn't wish that on anyone!!!!)

I did get a 'bug' whilst on the chemo too, which put me in hospital for 10 days on IV anti-biotics...the mrs and kids shrugged it off in 24hrs...nigh on killed me lmao.

The numbness in your fingers seems to be a common side effect, i had the same on my left thumb and index finger...it does get better, but 5 yrs down the line its still very slightly apparent.

I did get my optic nerve in one eye affected by the chemo too (Vincristine) which made one eye focus at a diffent length to the other, so it was a strange feeling...changing to Vinblastine for the last 2 treatments stopped this effect, but made the nauseousness 10 times as bad.....my eyesight has never really been the same since and looking at very close things hurts nowadays.

But hey..i'm still here 5 yrs later, so its a happy price to pay.

Don't be afraid to mention the side effects with your Oncologist, as there are some drugs which can be interchanged to lessen some of these.

Stay strong, keep believing

Mark

Lol thanks for the response.

I had a bug for 11 days before I started chemo and just gotten a runny nose a couple of nights before chemo, so its still there a week after chemo but i'm not too worried as I dont seem to be getting any more cold like symptoms. I have had toilet issues but I think mines the opposite to yours, I struggle to go. I'm going to get PICC line flushed tomorrow and dressing changed, planning on asking for stronger anti sickness so i'll mention the numb finger tips while i'm there. I have to admit though i'm really not a fan of taking so many meds and for such a long time. I'm relieved i've finished the course of steroids for now because I have to take 8 in the morning as well as 4 other tablets and that task makes me feel sick. I'm suprised our bodies cope with so much going on. My eyes have been pretty bad for about 14 years now so I sympathise with you. I have to say though (i'm always nagging my fiance about this) if you have glasses prescribed, make sure you wear them. I know people get self conscious at first and it can make you feel sick for a while, adjusting to the way the world looks through them, but they help alot in the long run.

Anyway thanks for the reply

Karen xx

Hi all

Hope I can offer a positive for you guys, I was diagnosed with NHL at age 27 and now 11 years later I'm fit and well I had the bone marrow tests you have talked about they have obviously not improved the in terms of the pain they inflict on us ! But if it helps save your life ......it's long forgotten all these yrs later! Good luck guys the treatments are so much better than 11 yrs ago so fingers crossed you will have minimal side effects and great future if I can help or you wanna chat just mail me my inbox is open x Sarah

Hi Sarah,

Thanks for your post. My side effects have unfortunately gotten worse, painful spasms in my lower back and my hair is definately on its way out now. I'm glad to hear a happy outcome though. They have changed my chemo from R Chop to R-CODOX-M/IVAC. Apparently it's a combination of 2 chemos. They've said with my subtype being Burkitt's they want to hit it really hard so it wont come back once it's gone. So I guess it's good they are trying so hard, but they are still going to keep an eye on me throughout the treatment to make sure i can handle it. As they said they want to kill the cancer not me. But i've basically asked to be sedated if I have to have another bone marrow. I had heard that they can put patients to sleep for it but when I asked they said they can only sedate me and hopefully I won't have to be put through it again anyway.

Will check back at a later date to see if you've left another message.

Speak soon,

Karen xx