Thanks for the reply earlier.
Is there anything you can do for the pain you are having?
Ok so update time,
Upgraded to stage 3 now follicular lymphoma,
I can have
Antibodies in i.v
Or and radio therapy on the problem node in my neck.
Im leaning towards the antibody therapy and radio on my neck keeping the chemo for later if i need it.
Any views,thoughts or comments on my choice?.
Have they said when you will be starting the treatment? I hope you are feeling calmer now after you've been told what the plan of action is.
I can't comment on the options you were given, but maybe you can get some advice if you post in the follicular lymphoma group?
I can only take paracetamol for the pain but don't do it too often due to nursing the baby. Hospital phoned me back today and said that by Wednesday I should know the scan date. The waiting game continues
I finally got my treatment date for 10th june for rituximab, see how that goes.
How you doing now? Has the pain eased any?
I'm glad you finally get to start the treatment soon. It must have been difficult couple of months. Let me know how you feel after the 1st dose.
I got a CT scan date due to cancellation.I had it done on Wednesday. My next consultant appointment is on 19.06 so hopefully results will be in by then.
The pain is still there: abdomen, lower back, legs. It's like a nerve pain in legs so it's more irritating than painful. The back is the worst. I also noticed new enlarged nodes. Are your nodes causing you any pain? I have neck and groin pain where the nodes are but dont know if it's coincidence.
Take care and have a lovely weekend
Hi, aneta how are you doing??
I'm still the same thank you for asking.
I had my ct scan results today and they haven't found any changes in my abdomen which is a relief. But they found a 6mm nodule at the bottom on my lung. They want to re-scan it in 3 months time.
I am now referred for an MRI and colonoscopy. Happy days MRI is the worst fear for someone living with claustrophobia but I'm glad it will be done.
How was the start of your treatment? I hope you are not suffering with any side effects.
Hi aneta, i find it hard to believe they cant do anything for your pain? Baffles me but at least there is some progress being made.
I hope your as well as can be remember be/think positive.
Well treatment didnt quite go to plan i had a cold from start to finish in about 20-30 minutes,, very weird experience. Had to stop the i.v. because i came up in a itchy lumpy red rash which was very quickly sorted thanks to my nurse lady. I was thinking of going to work today but didnt feel like it, im just so tired never felt like it before ,a bit sweaty and sticky also. I have to watch my temp if it goes over 38 i need to go to hospital as could be infection where my immune system is very low.
And the foods i cant eat ,dont get me started on that lol.
Any way im struggling on with it.
I do hope you get sorted out soon its no fun being ill .
How is the treatment going? I hope you got more luck with the next sessions and work isn't causing you any stress.
How come you have to avoid some foods?
I'm still stuck in the same limbo. Seeing a consultant on Wednesday to discuss spine MRI results. I now also have daily headaches and pain behind my eye. GP isn't concerned but I have this nasty feeling it's linked to other symptoms I'm having.
All the best to you
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