I think I have lymphoma
Discussion
Hi all, long time lurker. Looking for some help advice, and maybe a warning to others.
Had a cold that wiped me out for 4days in October 2014, 4 days in bed, sweats etc. Got better.
Started a cough and fatigue (didn't think too much of it tbh I work shifts and it was winter) at the start of January 2015, after 2 weeks went to the chemist, got some cough mixture after taking it for 2 weeks it made no difference.
Made an appointment at the doctors surgery to see the nurse, prescribed penicillin and a blue asthma inhaler, took those for 2 weeks made no difference.
Made an appointment to see the doctor, sent for a chest X-Ray and a blood test. Within 48 hours the doctor was phoning me at 7.30 in the morning to see her a 9.30 that morning to here her say quote ''Your bloods are all over the place'' X-Ray was ok, prescribed more tablets Clarithromycin 500 mg (big yellow things) went back 1 week later for another blood test bloods ''still all over the place especially my haemoglobin in between the 2 blood tests I had a lump under my left ear and on my neck/shoulder. Referred to a neck lump clinic at Kings Collage Hospital London, more blood tests and a lymph node biopsy, results came back as inconclusive. More tests booked, in this time I've had the following symptoms, still coughing, fatigue, breathlessness, night sweats (bed soaking) lumps still on my neck.
Since then more blood tests, all full biopsy, 2 lymph nodes removed, 7/04/2015 and a PET/CT scan 10/04/2015. I'm currently signed off work (way to much stress for my job and I'm lucky I have 6 months full sick pay) waiting for the results to come through next week.
I'm expecting to be told its lymphoma, tests will show whether its Hodgkin lymphoma or non-Hodgkin lymphoma.
I'm worried although I have used Dr Google and expecting the worse but praying for the best.
Just wondered if anyone has any experience of it.
Btw I'm 50, never smoked, fairly fit 5.11 13stone, until I got ill I was cycling 200 miles a week, and became a pescatarian for my NY resolution. I guess if I do have lymphoma I'm just unlucky
Moral of the story is, if you are worried about something don't thin it will go away, go to the doctor.
Had a cold that wiped me out for 4days in October 2014, 4 days in bed, sweats etc. Got better.
Started a cough and fatigue (didn't think too much of it tbh I work shifts and it was winter) at the start of January 2015, after 2 weeks went to the chemist, got some cough mixture after taking it for 2 weeks it made no difference.
Made an appointment at the doctors surgery to see the nurse, prescribed penicillin and a blue asthma inhaler, took those for 2 weeks made no difference.
Made an appointment to see the doctor, sent for a chest X-Ray and a blood test. Within 48 hours the doctor was phoning me at 7.30 in the morning to see her a 9.30 that morning to here her say quote ''Your bloods are all over the place'' X-Ray was ok, prescribed more tablets Clarithromycin 500 mg (big yellow things) went back 1 week later for another blood test bloods ''still all over the place especially my haemoglobin in between the 2 blood tests I had a lump under my left ear and on my neck/shoulder. Referred to a neck lump clinic at Kings Collage Hospital London, more blood tests and a lymph node biopsy, results came back as inconclusive. More tests booked, in this time I've had the following symptoms, still coughing, fatigue, breathlessness, night sweats (bed soaking) lumps still on my neck.
Since then more blood tests, all full biopsy, 2 lymph nodes removed, 7/04/2015 and a PET/CT scan 10/04/2015. I'm currently signed off work (way to much stress for my job and I'm lucky I have 6 months full sick pay) waiting for the results to come through next week.
I'm expecting to be told its lymphoma, tests will show whether its Hodgkin lymphoma or non-Hodgkin lymphoma.
I'm worried although I have used Dr Google and expecting the worse but praying for the best.
Just wondered if anyone has any experience of it.
Btw I'm 50, never smoked, fairly fit 5.11 13stone, until I got ill I was cycling 200 miles a week, and became a pescatarian for my NY resolution. I guess if I do have lymphoma I'm just unlucky
Moral of the story is, if you are worried about something don't thin it will go away, go to the doctor.
Edited by audikentman on Monday 13th April 15:57
Edited by audikentman on Monday 13th April 16:52
Edited by audikentman on Monday 13th April 17:02
I'm using a different user ID to my normal one.
12 years ago I had a cough for about a year (I kept on thinking it would go away the next week, but never did). At the end of the year it progressed to night sweats, lumps under the armpit and on the neck, massive weight loss, 'pins and needles' in my arm (one of the lumps was limiting the blood supply to my arm).
GP arranged a blood test. One week later had an appointment with a NHS Haematology doctor.
Our individual circumstances are obviously different, but this is what I remember:
Had biospy on neck lumps/nodes.
Had a scan - there were more internal lumps than the ones I knew about.
Tests showed it was Hodgkin lymphoma - was told by the doctor that 'if you had to have cancer this would be the one to choose'
Sperm went into storage
Had a bone marrow sample taken
Week two: started 6 cycles (12 treatments) of ABVD chemotherapy.
There were side effects - some hair loss/thining, losing taste and weight gain, however I was expecting much worse. I also had to have some of my toenails removed due to infection (my immunity was low). The cough disappeared after two treatments.
At the end of this I was given the 'all clear' after a couple of scans.
Looking back, I just had to sit there and be a passenger. I buried my head in the sand - the pressure affected my family more.
One year later a chest X-ray showed that I had an enlarged heart (caused by the ABVD chemotherapy). More scans followed.
12 years on I have haematology and cardiology check ups yearly. It took about 8 years to get back to my normal weight. I take tablets for the enlarged heart.
I don't want to either scare you or give false hope by reading the above. All of the treatment was on the NHS. It was 12 years ago - some of the treatment may have changed since then. All the best.
12 years ago I had a cough for about a year (I kept on thinking it would go away the next week, but never did). At the end of the year it progressed to night sweats, lumps under the armpit and on the neck, massive weight loss, 'pins and needles' in my arm (one of the lumps was limiting the blood supply to my arm).
GP arranged a blood test. One week later had an appointment with a NHS Haematology doctor.
Our individual circumstances are obviously different, but this is what I remember:
Had biospy on neck lumps/nodes.
Had a scan - there were more internal lumps than the ones I knew about.
Tests showed it was Hodgkin lymphoma - was told by the doctor that 'if you had to have cancer this would be the one to choose'
Sperm went into storage
Had a bone marrow sample taken
Week two: started 6 cycles (12 treatments) of ABVD chemotherapy.
There were side effects - some hair loss/thining, losing taste and weight gain, however I was expecting much worse. I also had to have some of my toenails removed due to infection (my immunity was low). The cough disappeared after two treatments.
At the end of this I was given the 'all clear' after a couple of scans.
Looking back, I just had to sit there and be a passenger. I buried my head in the sand - the pressure affected my family more.
One year later a chest X-ray showed that I had an enlarged heart (caused by the ABVD chemotherapy). More scans followed.
12 years on I have haematology and cardiology check ups yearly. It took about 8 years to get back to my normal weight. I take tablets for the enlarged heart.
I don't want to either scare you or give false hope by reading the above. All of the treatment was on the NHS. It was 12 years ago - some of the treatment may have changed since then. All the best.
Edited by davejohnsid on Monday 13th April 17:49
Edited by davejohnsid on Monday 13th April 17:51
davejohnsid. Glad to hear you got the 'all clear; thanks for the reply and reassurance. Things have moved on in 12 years, Dr Google and Wiki weren't around then, I'm not sure if that is good or bad though. It seems the PET/CT are a fairly new thing. The thing I am dreading most is if I need a lumber puncture, a friend had 1 for diagnosis of MS and passed out.
I have looked up and yes depending what level it is at it does seem tone of the better types to have, the last time I saw the specialist I told him I thought I had lymphoma he said 'lets wait for the biopsy and scan results then we can sort you out some treatment.' I researched it and found there are about 60 different types and treatment varies according to type.
1 of the worst things (apart from the fatigue and shortness of breath) is the night sweats, they are like nothing I've every experience, I wake up the bed is soaking and then I lay there thinking......I'm sure you had the same.
So far I can only sing the praises of the NHS, the treatment has been 1st class and the staff wonderful. It certainly puts things into perspective though.
I have looked up and yes depending what level it is at it does seem tone of the better types to have, the last time I saw the specialist I told him I thought I had lymphoma he said 'lets wait for the biopsy and scan results then we can sort you out some treatment.' I researched it and found there are about 60 different types and treatment varies according to type.
1 of the worst things (apart from the fatigue and shortness of breath) is the night sweats, they are like nothing I've every experience, I wake up the bed is soaking and then I lay there thinking......I'm sure you had the same.
So far I can only sing the praises of the NHS, the treatment has been 1st class and the staff wonderful. It certainly puts things into perspective though.
I think the scans I had were the pet and cat type - I had about four in all and get the two types mixed up - in the later scans the machine looked like a plastic donut. I was given Valium before the scans in order to stay still.
The bone marrow sample procedure was 'challenging'. In my case it took a few attempts to get a sample - I think the doctor doing the procedure was inexperienced. She looked more terrified at the end of it than me. Have someone there for moral support.
The bone marrow sample procedure was 'challenging'. In my case it took a few attempts to get a sample - I think the doctor doing the procedure was inexperienced. She looked more terrified at the end of it than me. Have someone there for moral support.
Thanks for the heads up. I'm glad I posted on here now, be wondering if I should. I had the combined scan, a nice injection of radioactive sugar water (joked about turning into Spiderman the crap jokes come thick and fast when your are worried.) about an hour before the scan then fed into a giant tube, I did wonder if there was a sedative with it as I fell asleep during the scan and felt tired for the rest of Friday.
I guess I posted on here for the advice and to unburned myself others who have had family or friends go through any kind of cancer treatment say that keeping your head together is as important as keeping healthy, although I've (only) lost 4lbs so far.
I guess I posted on here for the advice and to unburned myself others who have had family or friends go through any kind of cancer treatment say that keeping your head together is as important as keeping healthy, although I've (only) lost 4lbs so far.
I know it will seem daunting, but the best advice would be to take things one step at a time. In my case I just concentrated on the next appointment/procedure and deliberately didn't think too far ahead. My girlfriend at the time was very supportive which made things much easier to deal with. I am very grateful to the NHS - the outcome and potential expense may have been different if I lived elsewhere.
I haven't looked into it recently , but I was told at the time that they didn't know what caused hodgkin's disease so I couldn't have done any thing to avoid it.
I haven't looked into it recently , but I was told at the time that they didn't know what caused hodgkin's disease so I couldn't have done any thing to avoid it.
Edited by davejohnsid on Monday 13th April 19:13
tless with.Sorry, but I hope its made you aware, please don't bury your head in the sand, your lump sounds like it is in the same place as 1 of mine, other symptoms are night sweat, being out of breath, fatigue and loss of weight, go to the doctor, ask for a blood test. It lymphoma is 1 of the more treatable cancers, I had my 1st blood test on 17th February and next week I should have confirmation or not and a treatment plan in place.
Edited by audikentman on Monday 13th April 21:06
I don't have night sweats but I have woken in the night a few times recently feeling dizzy and out of breath. I am often fatigued as well.
I've also occasionally noticed a lump when trying to swallow, especially if my head is turned in a particular way, it's like someone is ramming a golf ball down there.
Thing is I only had a blood test a year ago so if it is serious it's only occurred in the last 12 months.
I've also occasionally noticed a lump when trying to swallow, especially if my head is turned in a particular way, it's like someone is ramming a golf ball down there.
Thing is I only had a blood test a year ago so if it is serious it's only occurred in the last 12 months.
Definetly get it checked out to be on the safe side - any cough you've have for more than a few weeks should be looked into. My cough was a dry cough.
In terms of night sweats, the bed sheets used to get saturated mid way through the night. I had to change them in the middle of the night and in the morning. This would happen even if the room was freezing.
In terms of night sweats, the bed sheets used to get saturated mid way through the night. I had to change them in the middle of the night and in the morning. This would happen even if the room was freezing.
My last blood test before all this kicked off was about June last year, I was constantly feeling tired, blood test showed nothing, after a chat with the doctor came to the conclusion I was over doing it along with stupid shift work, re-jigged my life and was fine until the Flu at the end of October and then Januarys cough. The order of my symptoms have been cough, out of breath climbing the stairs, then the freaky blood test rests, lumps on my neck, now the night sweats and a loss of weight. The blood test wont tell the doctor you have lymphoma, but it can point them in the right direction, on the copy of the blood test not a single marker is normal, they are either high or low. These are some of the markers.
17/02/2015 chest x-ray normal
17/02/2015 Serum C reactive protein level = 106mg/l High
17/02/2015 Serum creatinine 60 umol/l Low
17/02/2015 Haematocrit 38.2%Low
17/02/2013 total white cell count 430 10*9L High
The list goes on along with my blood test from 26/02/2015 and I have no idea what it means, but when the doctor phones you at 7.30 in the morning saying 'I need to see you' and by 9.30 you are in her office you I now know things were serious, I'm just starting to realise exactly how serious.
17/02/2015 chest x-ray normal
17/02/2015 Serum C reactive protein level = 106mg/l High
17/02/2015 Serum creatinine 60 umol/l Low
17/02/2015 Haematocrit 38.2%Low
17/02/2013 total white cell count 430 10*9L High
The list goes on along with my blood test from 26/02/2015 and I have no idea what it means, but when the doctor phones you at 7.30 in the morning saying 'I need to see you' and by 9.30 you are in her office you I now know things were serious, I'm just starting to realise exactly how serious.
Agree 100% with davejohnsid get it checked out, the 1st blood test is non fasting, they are not checking for cholesterol etc, I went straight from the doctors to the local hospital, within 48 hours my results were back as for age use Dr Google both types of lymphoma can affect any age group, more common in smokers and the overweight though, I'm neither of these but it would seem I've been dealt a bum hand in white blood cells.
My issue is I think they think I'm a hypochondriac.
Five years ago I went to them with bowel problems after I went from around 10.5stone to 8stone. It took me years to gain the weight again, no matter how much I ate. I managed to get back up to 10stone but I've gone back down to just over 9stone again now.
Thing is, over the last 18months I've also adjusted my diet, reducing sugar and junk food and I've also been doing regular exercise so this is probably anathema to trying to put weight back on! The bowel problems still persist though and I've simply given up trying to sort it. It took two years from me saying I had a problem to them getting me an ultrasound, a sigmoidoscopy and then the results where they said "we don't know what the problem is". Their default position has also always been "you're too young for bowel cancer" and they've never even considered something like crohns.
I dread going back to them and having to say "I think there's a lump in my throat" because I don't think they ever take me seriously. I guess I just have it in my head they roll their eyes and think "here he goes again".
Five years ago I went to them with bowel problems after I went from around 10.5stone to 8stone. It took me years to gain the weight again, no matter how much I ate. I managed to get back up to 10stone but I've gone back down to just over 9stone again now.
Thing is, over the last 18months I've also adjusted my diet, reducing sugar and junk food and I've also been doing regular exercise so this is probably anathema to trying to put weight back on! The bowel problems still persist though and I've simply given up trying to sort it. It took two years from me saying I had a problem to them getting me an ultrasound, a sigmoidoscopy and then the results where they said "we don't know what the problem is". Their default position has also always been "you're too young for bowel cancer" and they've never even considered something like crohns.
I dread going back to them and having to say "I think there's a lump in my throat" because I don't think they ever take me seriously. I guess I just have it in my head they roll their eyes and think "here he goes again".
So what if they think that, better safe than sorry, hopefully there is nothing wrong or just swollen glands, but remember the adverts on TV saying go to the doctors if a cough lasts more than 3 weeks. Tell them your symptoms, my lump below my ear is hard and non movable, the ones by my neck/shoulder started off feeling like a marble then in the space of a week I had about 3 of them and if you can imagine cupping your hand the swelling would just about fit in that. I remember saying to the doctor I thought I had thyroid cancer.
Edited by audikentman on Monday 13th April 22:03
Let us know what happens, if they give you cr@p just tell them you are worried and want your mind put at rest.You have my sympathies, have been through something similar starting from a persistent cough in November, culminating in a surgical biopsy of the lymph glands in my chest. Got the partial results from that a few weeks back, no cancer which to say was a massive relief is an understatement. I was fully expecting a lymphoma diagnosis but all along the way the consultants, surgeons, etc. said to be positive about it as the treatment is very successful now days.
Had a follow up appointment yesterday and they've diagnosed Sarcoidosis. Would rather it be that there is nothing wrong with me but this outcome isn't too bad. Going to have another CT scan in a few months time to see how things are progressing.
Had a follow up appointment yesterday and they've diagnosed Sarcoidosis. Would rather it be that there is nothing wrong with me but this outcome isn't too bad. Going to have another CT scan in a few months time to see how things are progressing.
I had Hogkins Lymphoma when I was 30, very fit semi pro footballer 6ft wish & just under 13st. Bit of a shock but once diagnosed the ball starts rolling very quickly, the treatment makes you a bit zombies out but it is not painful per set. I lost my hair & it didn't grow back, & I lost about 3 st, but the good news is that if caught early enough the prognosis is good.
The other good news is that was 28 years ago & I am still here. I believe the treatment is not so aggressive now so long term effects are lessened, & although I regained my fitness quickly it has compromised my immune system & I have a few health problems that have been caused by that. Don't let yourself worry about that though, everyone is different & as I said the treatment is less aggressive now so fingers crossed you will be fine. Oh, I carried on playing football to a good standard until I was 47 so I am sure you will be able to regain your fitness & carry on cycling.
Good luck & try (even if it seems impossible) to not dwell on it.
The other good news is that was 28 years ago & I am still here. I believe the treatment is not so aggressive now so long term effects are lessened, & although I regained my fitness quickly it has compromised my immune system & I have a few health problems that have been caused by that. Don't let yourself worry about that though, everyone is different & as I said the treatment is less aggressive now so fingers crossed you will be fine. Oh, I carried on playing football to a good standard until I was 47 so I am sure you will be able to regain your fitness & carry on cycling.
Good luck & try (even if it seems impossible) to not dwell on it.
Thanks for the kind words, I'm pleased to hear you got the all clear on lymphoma, its the waiting between tests and results that's the worst for me which is why my doctor signed me off for a month.
I'm glad I posted on here now, I guess I just wanted to unload myself anonymously.
I just had to use Dr Google to look up Sarcoidosis good luck in the coming months with the battle against it.
I'm glad I posted on here now, I guess I just wanted to unload myself anonymously.
I just had to use Dr Google to look up Sarcoidosis good luck in the coming months with the battle against it.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff