I think I have lymphoma
Discussion
Thanks for all the thoughts guys.
The problem with the system is it often seems to grind to a halt leaving you hanging with no information. You simply have to chase directly or (better) get someone official to do for you. Monday after op on weds haematology consultant rung up to ask if he could chase surgery, rang back to say probably HL but not definitely. Rang back on Wednesday by him to say don't come in on the following day as no further info, appointment moved until the Monday. Rang by haematologist 1130am Saturday with definite diagnosis. This new 7 day NHS line from Jeremy *unt is completely ridiculous.
Due to see surgeon next Thursday when would have had results. Due to the excellence of the haematologist and chasing up I go straight from that appointment at 930am to 1st Chemo at 11am rather than further delay of potentially weeks.
Cancer diagnosis- speed matters!
fridaypassion said:
I got a call back from an initial biopsy op and we had nearly 2 weeks of no info. Very stressful.
I'm sorry you had that stressful waiting period too. The last 2 months- from knowing there was an invasive mass in my chest/ lungs- to getting a diagnosis have been stressful, particularly for my other half. Unfortunately counselling is not offered until you have an exact diagnosis, even if they know you have cancer. Something that I will write and complain about!The problem with the system is it often seems to grind to a halt leaving you hanging with no information. You simply have to chase directly or (better) get someone official to do for you. Monday after op on weds haematology consultant rung up to ask if he could chase surgery, rang back to say probably HL but not definitely. Rang back on Wednesday by him to say don't come in on the following day as no further info, appointment moved until the Monday. Rang by haematologist 1130am Saturday with definite diagnosis. This new 7 day NHS line from Jeremy *unt is completely ridiculous.
Due to see surgeon next Thursday when would have had results. Due to the excellence of the haematologist and chasing up I go straight from that appointment at 930am to 1st Chemo at 11am rather than further delay of potentially weeks.
Cancer diagnosis- speed matters!
Well good luck with it. I have added before in this thread but I'm on watch and wait for a far (I hope!) less serious condition of NLPHL. Initially after I got the diagnosis I did have a full round of Chemo scheduled but after a second inconclusive biopsy and a couple of goes in the polo mint machine they were happy to leave me to develop symptoms.
The hematologist left me with the oh so reassuring words that she had never had an NLPHLer die on her so I just crack on with life for the moment. Makes you appreciate life more. I drink in every single day of it.
You guys with the more aggressive lymphoma variants are inspirational. Chemo isnt something to look forward to but at some unspecified time in the future I'll be back asking for tips!
I would be interested to know if anyone else has had NLPHL. Apparently quite rare (lucky me).
The hematologist left me with the oh so reassuring words that she had never had an NLPHLer die on her so I just crack on with life for the moment. Makes you appreciate life more. I drink in every single day of it.
You guys with the more aggressive lymphoma variants are inspirational. Chemo isnt something to look forward to but at some unspecified time in the future I'll be back asking for tips!
I would be interested to know if anyone else has had NLPHL. Apparently quite rare (lucky me).
mclwanB, at least you now know what it is now. Is your chemo going to be ABVD?
I was lucky mine was so aggressive and obvious that the lymph nodes on my neck and under my arm were literally coming up between needle biopsy and full biopsy (which was a fairly easy removal of a node on my neck) but until I looked at the PET scan I had no idea I had a tumour the size of a fist pushing on my lungs that was giving me the cough that started my trips to the doctor.
You should (if you haven't already) be assigned a specialist nurse now you are in the system, they are a great point of contact if you have any questions or worries.
Try to get your house as clean as possible, dettol surface wipe on door handles etc, some alcohol hand wash in the house for anyone who visits, you will be more susceptible to any coughs, colds etc now and these can set your chemo back.
fridaypassion I have a friend whose mother had Non Hodgkins Lymphoma and is currently having no treatment just regular blood tests, tbh I'm not sure why, I will try to find out.
I was lucky mine was so aggressive and obvious that the lymph nodes on my neck and under my arm were literally coming up between needle biopsy and full biopsy (which was a fairly easy removal of a node on my neck) but until I looked at the PET scan I had no idea I had a tumour the size of a fist pushing on my lungs that was giving me the cough that started my trips to the doctor.
You should (if you haven't already) be assigned a specialist nurse now you are in the system, they are a great point of contact if you have any questions or worries.
Try to get your house as clean as possible, dettol surface wipe on door handles etc, some alcohol hand wash in the house for anyone who visits, you will be more susceptible to any coughs, colds etc now and these can set your chemo back.
fridaypassion I have a friend whose mother had Non Hodgkins Lymphoma and is currently having no treatment just regular blood tests, tbh I'm not sure why, I will try to find out.
Edited by audikentman on Sunday 10th April 12:17
^^^^^^^^^^
Top advice, I remember when mum was going through Chemo, we were all so aware how dangerous even a cold could be. If any of us even got so much as a sniffle we would stay away.
Also mum bought one of those juicers you were on about, mum and dad made loads of wierd and wonderful drinks from all sorts of fruit and veg. Seemed to really help.
Top advice, I remember when mum was going through Chemo, we were all so aware how dangerous even a cold could be. If any of us even got so much as a sniffle we would stay away.
Also mum bought one of those juicers you were on about, mum and dad made loads of wierd and wonderful drinks from all sorts of fruit and veg. Seemed to really help.
chilistrucker said:
^^^^^^^^^^
Top advice, I remember when mum was going through Chemo, we were all so aware how dangerous even a cold could be. If any of us even got so much as a sniffle we would stay away.
Also mum bought one of those juicers you were on about, mum and dad made loads of wierd and wonderful drinks from all sorts of fruit and veg. Seemed to really help.
Yeap I locked myself away for a week after my chemo, then the day before I would spend the day cleaning my house, don't think its ever been so clean Top advice, I remember when mum was going through Chemo, we were all so aware how dangerous even a cold could be. If any of us even got so much as a sniffle we would stay away.
Also mum bought one of those juicers you were on about, mum and dad made loads of wierd and wonderful drinks from all sorts of fruit and veg. Seemed to really help.
anyone who came round alcohol hand wash at the door.I loved the nutri nija so much I still use it everyday for breakfast 3-4 different fruits to sip while I was watching Homes under the hammer in the morning
audikentman said:
fridaypassion I have a friend whose mother had Non Hodgkins Lymphoma and is currently having no treatment just regular blood tests, tbh I'm not sure why, I will try to find out.
Apparently because I'm a whippersnapper of only 36 the ABVD has more chance of giving another type of cancer later in life that would be worse than the NLPHL. Apparently I could wake up with night sweats tonight or in 5 years or 15 years. Its a total unknown. Its given me a strange outlook on life that I cant say despite all the stress its been an entirely bad thing. I'll re read this post when I've got the B of the ABVD kicking in and try and remember how lucky I have been.Edited by audikentman on Sunday 10th April 12:17
Its an odd one as read on on the Lymphoma association forum some people in other areas of the country and in the US have been put on AVBD straight away. I re checked this a couple of times with my Hematologist and have been assured all treatment decisions are team peer reviewed and this is what they all think is best for me. I'm not complaining. The whole thing has given me a kick up the arse and I've gone on to do things I might not have done before (own business etc). YOLO. throw away term but study it very hard and its the truest of truisms.
Thanks for all the advice and wishes, less easy to be clean with a dog and 8 month old but they help in other ways. Bit stunned by the diet- I like my salad.
Fridaypassion I do wonder how long I've had this- it only started showing signs when it ate it's way out of my mediastinum and into my lungs. Yes Audi high dose ABVD for 12 cycles is the plan. Just looking forward to starting as pain is only controlled 4-4hrs out of the 6 between doses atm. Trying a few different avenues re that right now.
Fridaypassion I do wonder how long I've had this- it only started showing signs when it ate it's way out of my mediastinum and into my lungs. Yes Audi high dose ABVD for 12 cycles is the plan. Just looking forward to starting as pain is only controlled 4-4hrs out of the 6 between doses atm. Trying a few different avenues re that right now.
I wasn't told about salad and kept eating them, was told to stop any live culture yoghurt but home made soups were my favourite
Its a strange feeling waiting for it H.L seems a hard 1 to diagnose some people seem to wait years, blood tests ok, but when you get the diagnosis you just want to crack on with it.
I remember waiting for my 1st session to start Tuesday 28th April 2015 chemo nurse said ''How are you feeling'' Me I'm looking forward to it.''
Its a strange feeling waiting for it H.L seems a hard 1 to diagnose some people seem to wait years, blood tests ok, but when you get the diagnosis you just want to crack on with it.
I remember waiting for my 1st session to start Tuesday 28th April 2015
chemo nurse said ''How are you feeling'' Me I'm looking forward to it.''Edited by audikentman on Tuesday 12th April 12:56
audikentman said:
I remember waiting for my 1st session to start Tuesday 28th April 2015 chemo nurse said ''How are you feeling'' Me I'm looking forward to it.''
Yes I said something similar and got an odd look! chemo nurse said ''How are you feeling'' Me I'm looking forward to it.''Edited by audikentman on Tuesday 12th April 12:56
Pain relief sorted now after discussion with the GP- consultantstage are just to specialised for things like that. Oxycodone dose doubled, add in Gabapentin and swap ibuprofen for naproxone. Has worked but a few side effects including euphoria- which isn't too bad tbh!
Drip inserted and just waiting to start..
I'm still going but have just had a tough 10days with nausea related to the chemo.
Now on better meds- getting there- and being given the best ones before starting the next treatment so hopefully that will be much improved.
Other than the nausea less of a train wreck than expected; nausea enough on its own though!
Now on better meds- getting there- and being given the best ones before starting the next treatment so hopefully that will be much improved.
Other than the nausea less of a train wreck than expected; nausea enough on its own though!
Good timing Audi- 3rd treatment today. Hope everything is getting back to normal for you.
Have had issues but nothing not sortable so far, long may that continue.
Nausea 1st treatment (cycle 1a.. who comes up with this terminology???) sorted by Emend (a 50£/ each treatment cost to the nhs antinausea drug) mostly.
Severe muscle pain (myalgia) and twitching etc cycle 1b fixed by stopping the prophylactic antibiotic ciprofloxacin they'd put me on. Amazing what you can learn 1am-5am if you are medically trained and have unrestricted access to a load of medical journals! Consultant hadn't seen it before and was interested in the paper suggesting some myalgia reported in c10% in a small retrospective study. Just given my rarely severe myalgia I wouldn't willingly go back on it unless my life depended on it but it's well known and labelled up for peripheral neuropathy.... which is usually blamed on ABVD chemotherapy! Think someone needs to do some proper research on side effects. Would be cautious about lots of what maybe crazy stuff written online in forums etc on how people suspect (not their word) ciprofloxacin to have ruined their lives, would not necessarily believe that to be causal.
Stopping the cipro did markedly improve the nausea too.
Just a mild-moderate degree of discomfort from the cannulated vein this evening. Fortunately I know what to look for and think it is nothing significant- anaesthetist had a bad vein day for last GA c6 weeks ago and pain same place. Will monitor for the next hour of Sharknado- needed a laugh- and then go to bed if ok. #pleasenotissueforcycle2a!!!
Other than issues and being easily tired not too bad. Wife did a race for life 2 days after treatment 2 and did too much (not a lot honestly... well pushing 9mo in pushchair over rutted field for a mile or so!) supporting her and easily tired, generally story of my life atm- I don't do taking it easy easily! Councelling has helped other half, dont feel I needed it.. now at least. Started postgrad cert midule and have a load of revision for online assessment on Sunday- all good fun.
Off all cancer pain meds and chest pains gone, cough just dry, so let's hope Donald Trump (I did name the tumour if I didn't say...) is shrivelled up feeling very ill indeed
Have had issues but nothing not sortable so far, long may that continue.
Nausea 1st treatment (cycle 1a.. who comes up with this terminology???) sorted by Emend (a 50£/ each treatment cost to the nhs antinausea drug) mostly.
Severe muscle pain (myalgia) and twitching etc cycle 1b fixed by stopping the prophylactic antibiotic ciprofloxacin they'd put me on. Amazing what you can learn 1am-5am if you are medically trained and have unrestricted access to a load of medical journals! Consultant hadn't seen it before and was interested in the paper suggesting some myalgia reported in c10% in a small retrospective study. Just given my rarely severe myalgia I wouldn't willingly go back on it unless my life depended on it but it's well known and labelled up for peripheral neuropathy.... which is usually blamed on ABVD chemotherapy! Think someone needs to do some proper research on side effects. Would be cautious about lots of what maybe crazy stuff written online in forums etc on how people suspect (not their word) ciprofloxacin to have ruined their lives, would not necessarily believe that to be causal.
Stopping the cipro did markedly improve the nausea too.
Just a mild-moderate degree of discomfort from the cannulated vein this evening. Fortunately I know what to look for and think it is nothing significant- anaesthetist had a bad vein day for last GA c6 weeks ago and pain same place. Will monitor for the next hour of Sharknado- needed a laugh- and then go to bed if ok. #pleasenotissueforcycle2a!!!
Other than issues and being easily tired not too bad. Wife did a race for life 2 days after treatment 2 and did too much (not a lot honestly... well pushing 9mo in pushchair over rutted field for a mile or so!) supporting her and easily tired, generally story of my life atm- I don't do taking it easy easily! Councelling has helped other half, dont feel I needed it.. now at least. Started postgrad cert midule and have a load of revision for online assessment on Sunday- all good fun.
Off all cancer pain meds and chest pains gone, cough just dry, so let's hope Donald Trump (I did name the tumour if I didn't say...) is shrivelled up feeling very ill indeed
Glad you are coping Ok with it, and hope the online assessment goes well, you have far more medical knowledge than me.
Nausea wise I didn't do too bad, never puked once I just took all the drugs they prescribed. 1 of the worse things I had was constipation, and even then it wasn't as bad as I've read some have, I just maxed out on fruit and veggies, lots of olive oil on everything and an extra strong sennakot every night for 6 months.
The tiredness/fatigue got worse as my treatment went on, but being signed off sick and on full pay for 6 months let me sleep and rest as I wanted too.
How many cycles of ABVD are you having?
I'm just having some chest problems again, went for a couple of brisk 5kms walks and got back on my bike for 1 bike ride and ended up at my doctors, prescription for medication, then sent for a chest x-ray, blood test, usual story, pretty much the same story as last April
and told I was suffering with with bronchitis
Nausea wise I didn't do too bad, never puked once
I just took all the drugs they prescribed. 1 of the worse things I had was constipation, and even then it wasn't as bad as I've read some have, I just maxed out on fruit and veggies, lots of olive oil on everything and an extra strong sennakot every night for 6 months.The tiredness/fatigue got worse as my treatment went on, but being signed off sick and on full pay for 6 months let me sleep and rest as I wanted too.
How many cycles of ABVD are you having?
I'm just having some chest problems again, went for a couple of brisk 5kms walks and got back on my bike for 1 bike ride and ended up at my doctors, prescription for medication, then sent for a chest x-ray, blood test, usual story, pretty much the same story as last April
and told I was suffering with with bronchitis Edited by audikentman on Friday 10th June 07:31
Nausea isn't too bad on the best meds and haven't puked since I've been on them. Constipation is not pretty- have sympathy for women in childbirth, lost 2kg (4.4lb) after 1 sitting..... balancing with movicol etc seems hard (literally). 1.5 cycles done, 4.5 to go.
Glad your scare was unrelated!
Glad your scare was unrelated!
Just started the 3rd cycle (5th treatment) of chemo today- have dropped one of the drugs (bleomycin) so hopefully less side effects (probably not though!). The last two have been initially tough but breathing/ energy have been much better once effects have worn off.
However, just got back and phoned by the consultant with the results of Monday's PET-CT scan- *no metabolic activity/ clear* which is absolutely fantastic but doesn't feel at all real yet!
There's still a fair bit of road to travel- another 7 chemotherapy treatments- if the side effects don't worsen- to reduce the chance of it coming back (very unlikely) and a period of recovery after that.
However, just got back and phoned by the consultant with the results of Monday's PET-CT scan- *no metabolic activity/ clear* which is absolutely fantastic but doesn't feel at all real yet!
There's still a fair bit of road to travel- another 7 chemotherapy treatments- if the side effects don't worsen- to reduce the chance of it coming back (very unlikely) and a period of recovery after that.
Great news you are winning, once you get to the half way line at least you can see the finishing line. Its a fantastic feeling when you finally get some good news after a scan rather than the constant bombardment of bad news.
Looking back a lot of my treatment was a drug induced blur with large amounts of sllep and intermittent doses of daytime Tv.
Why was the bleomycin dropped I assume it was the hospitals decision, have you had chest related issues?
I have my 2nd 3 month check up next week and will be thinking of you doing this next year
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