I think I have lymphoma
Discussion
mclwanB said:
Peripheral neuropathy has largely resolved- do get cramp intermittently in hands/ feet- anybody else had that?
I had severe Peripheral neuropathy for a year in a very sensitive place. Yup. Made my life a living hell. A constant tingling like needing the toilet. I got put on amitriptyline, which worked wonders; after a year of doctors appointments with them prescribing every anti-biotic under the sun. I eventually lost my temper with the second GP surgery I had visited (first were useless after a dozen appointments) and was referred to a sexual health clinic to see a specialist doctor. She was fantastic, talked for nearly an hour and she came to the conclusion it was nerve damage! I kept having to up my dose though as I was quite tolerant to it. Still, was mega worth it.I managed to have a small operation to sever the nerve that was causing the sensation though. Been good for 14 months now!
Amitriptyline really was amazing though, in low doses.
Peripheral neuropathy easing, hoping veins will soften soon (eating the prescribed dark chocolate)! But ABVD chemotherapy are my favourite drugs as PET scan clear again!
Back at work doing short (well 8-9hr) days x 4 a week atm, should be full time again in 4 weeks.
Interested in what has been said re repeat PET-CT scans- I've been told they don't unless (initially every 3 months) re-examination, bloods or x rays are suspicious
Back at work doing short (well 8-9hr) days x 4 a week atm, should be full time again in 4 weeks.
Interested in what has been said re repeat PET-CT scans- I've been told they don't unless (initially every 3 months) re-examination, bloods or x rays are suspicious
Evening all.
First time contributing to the thread; can I start by saying it has been an inspirational read and I'm rooting for everyone who is on this road at the moment.
So here's where I am.
I don't know whether I have lymphoma or not yet. To cut a very long story short, I have had some health problems for over a decade, including a massive post-op infection following what was major, but routine, abdominal surgery. I hope that makes sense. Anyway, had to have a lot of surgery to repair the damage so have become somewhat used to the sight, sound and smells of the operating theatre. In truth, I never really made a full recovery, but I was okay. There was a tendency, however, to put any symptom down to the shambles my insides were in after the surgery.
Then about a year ago I was out for the day when I developed a sciatica type of pain in my left leg. I'd had sciatica on and off over the years, but it had been a long time since it had really bothered me. However, this was different; I started to get pins and needles in my leg, followed by a loss of sensation, and finally by the feeling that I was dragging my foot on the ground. So I signed up for physio, which helped a bit, but my reflexes in that leg were still crap and it still went numb from time to time. The doc sent me for an x-ray and it showed some arthritis in my spine but nothing remarkable.
Next, after having a couple of spectacular kidney infections and a scan showing a stone, I was sent for a CT scan. My kidneys were okay, but the scan showed some enlarged lymph nodes in my groin.
On its own this wasn't particularly dramatic, but I had also developed a couple of persistently high inflammatory markers, ie an elevated ESR and CRP, with nothing to account for them except my scrambled abdomen. Since then it has also been noted that another marker, my LDH level, is more than twice the upper level of normal. Hmmmm.
So last week I saw the Haematologist and yesterday I had another CT scan. So now we wait. May well come back clear, which will leave us with the mystery of all the elevated blood work, but tbh I just want to know. The sciatica may well be related.
The icing on the cake was that he also found a mole on my neck which he is pretty sure is a basal cell carcinoma, so it was a bit of a s
t sandwich, frankly. Anyhoo, reading this thread has helped a lot, so thanks guys
First time contributing to the thread; can I start by saying it has been an inspirational read and I'm rooting for everyone who is on this road at the moment.
So here's where I am.
I don't know whether I have lymphoma or not yet. To cut a very long story short, I have had some health problems for over a decade, including a massive post-op infection following what was major, but routine, abdominal surgery. I hope that makes sense. Anyway, had to have a lot of surgery to repair the damage so have become somewhat used to the sight, sound and smells of the operating theatre. In truth, I never really made a full recovery, but I was okay. There was a tendency, however, to put any symptom down to the shambles my insides were in after the surgery.
Then about a year ago I was out for the day when I developed a sciatica type of pain in my left leg. I'd had sciatica on and off over the years, but it had been a long time since it had really bothered me. However, this was different; I started to get pins and needles in my leg, followed by a loss of sensation, and finally by the feeling that I was dragging my foot on the ground. So I signed up for physio, which helped a bit, but my reflexes in that leg were still crap and it still went numb from time to time. The doc sent me for an x-ray and it showed some arthritis in my spine but nothing remarkable.
Next, after having a couple of spectacular kidney infections and a scan showing a stone, I was sent for a CT scan. My kidneys were okay, but the scan showed some enlarged lymph nodes in my groin.
On its own this wasn't particularly dramatic, but I had also developed a couple of persistently high inflammatory markers, ie an elevated ESR and CRP, with nothing to account for them except my scrambled abdomen. Since then it has also been noted that another marker, my LDH level, is more than twice the upper level of normal. Hmmmm.
So last week I saw the Haematologist and yesterday I had another CT scan. So now we wait. May well come back clear, which will leave us with the mystery of all the elevated blood work, but tbh I just want to know. The sciatica may well be related.
The icing on the cake was that he also found a mole on my neck which he is pretty sure is a basal cell carcinoma, so it was a bit of a s
t sandwich, frankly. Anyhoo, reading this thread has helped a lot, so thanks guys
fridaypassion said:
Still watch and wait feeling very good no problems. Regular lump checks. Dropped to 6 monthly bloods.
Hope you're well matey often wonder as I'm sure a lot of us do how you are doing.
Good stuff, Hope you're well matey often wonder as I'm sure a lot of us do how you are doing.
I'm back at work on 3 month check ups, had a few issues, random coughs, colds etc as my body rebuilds its immune system. Realise how fragile life is and to live life to the full, because we are just a visit to the Gp away from a life changing illness. I have 2 work colleague having treatment at the moment, 1 for lung cancer and 1 for bowel cancer.
Watched this on iplayer and bought some of it back to me. Well worth a watch by anyone. I've said before. People who don;t have cancer don't realise how lucky they are.
http://www.bbc.co.uk/news/uk-scotland-40352688
Glad to hear you're ok Audi.
I seem to be back to normal. 1st clear PET CT (after 4 chemos) meant chance of recurrence 4% & had another clear one after that. Check up every three months, full time at work (c60-75 hr weeks) since December. Bit tired but no change there!!
I seem to be back to normal. 1st clear PET CT (after 4 chemos) meant chance of recurrence 4% & had another clear one after that. Check up every three months, full time at work (c60-75 hr weeks) since December. Bit tired but no change there!!
Edited by mclwanB on Wednesday 26th July 23:15
Apologies for the epic thread bump, but how is everyone getting on?
I’ve been back and forth to the Doctor after a lymph node swelled to the size of an egg in my armpit. Bloods all came back clear and was referred for 2 ultra sounds 8 weeks apart. They confirmed it was swollen lymph but didn’t look suspicious. Also found several other swollen ones I wasn’t aware of.
Doctor at a loss for cause and is now asking advice from Haematology whether I need a referral for biopsy to look for Lymphoma. Have suffered from fatigue and persistent itching for few months which could also be a symptom but Doctor doesn’t seem too concerned.
Not overly anxious at the minute but mindful it could be something sinister.
I’ve been back and forth to the Doctor after a lymph node swelled to the size of an egg in my armpit. Bloods all came back clear and was referred for 2 ultra sounds 8 weeks apart. They confirmed it was swollen lymph but didn’t look suspicious. Also found several other swollen ones I wasn’t aware of.
Doctor at a loss for cause and is now asking advice from Haematology whether I need a referral for biopsy to look for Lymphoma. Have suffered from fatigue and persistent itching for few months which could also be a symptom but Doctor doesn’t seem too concerned.
Not overly anxious at the minute but mindful it could be something sinister.
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