I think I have lymphoma
Discussion
davejohnsid, thanks for the 1st hand advice, I had seen the steroids mentioned, that will explain the weight gain then 
I have a days were I can't stop eating, I make sure I have some houmous and fresh veggies in the fridge, at least I get some goodness down my neck. Hopefully only 1 more cycle (2 sessions) to go hopefully I will still fit into my clothes at the end 
I have a days were I can't stop eating, I make sure I have some houmous and fresh veggies in the fridge, at least I get some goodness down my neck. Hopefully only 1 more cycle (2 sessions) to go hopefully I will still fit into my clothes at the end Yes I currently have the 'metallic' taste, and so eat strong flavours, curries, crisps, cheese (which I love anyway) marmite on toast, went right off porridge and fruit at the start but buying a nutri ninja I now love a daily fruit smoothie. Glad to hear you seem better after beating the f**ker!
Glad to hear that Moominho, hope its going Ok for him. It seems week after chemo is pretty groggy, almost everyone says it, then the next week is not to bad, eat healthy, have some kind of life and build my strength up.
Had my blood test yesterday, start my last (4th) cycle of ABVD on Tuesday. Currently eating smaller but more regular meals to try to minimise the taste in my mouth along with eating Bassets Liquorice Allsorts
Had my blood test yesterday, start my last (4th) cycle of ABVD on Tuesday.
Currently eating smaller but more regular meals to try to minimise the taste in my mouth along with eating Bassets Liquorice Allsorts Thanks, had the 13 pill breakfast today, only 1 more session (hopefully) to go then see if I need radiotherapy, so far I've put on 8 - 10 kilos, not been sick yet just a bit constipated but easily cured with a senakot each night and my stomach acid was cured with a daily dose of 20mg Omeprazole. May as well take all the drugs, my prescriptions are free for at least the next 5 years.
The most widely saying I've seen about the chemo is 'Its tough but doable' and I would go along with this, but after my white cell count hit the deck and I had to inject myself for 7 days in my stomach my counts have picked up and I feel less ill.
I tip - my veins have gone hard, apparently its a common side effect of ABVD chemo, if you have a bathe or shower just rub your arms in the warm water for 5 - 10 minutes it helps to keep your veins a bit softer
The most widely saying I've seen about the chemo is 'Its tough but doable' and I would go along with this, but after my white cell count hit the deck and I had to inject myself for 7 days in my stomach my counts have picked up and I feel less ill.
I tip - my veins have gone hard, apparently its a common side effect of ABVD chemo, if you have a bathe or shower just rub your arms in the warm water for 5 - 10 minutes it helps to keep your veins a bit softer
Moominho, glad its been a help. Hopefully it will come good for your Dad.
I had my blood test Friday, must have been ok, didn't have to inject my stomach again, and I've not needed a blood transfusion and it seems the steroid have made me put on 10 kilos in 4 months of treatment
. Had my last chemo yesterday (hopefully), they even managed to get the cannula in 1st go toughest after effect so far to be honest, 1st time I've felt sick as I left Kings Collage, almost puked 3 times walking to the station and I've not puked once during the 8 sessions, 4 cycles of ABVD. Currently on the post chemo crash now.
CT/PET scan booked for 17th then a meeting with the oncologist on the 21st, no doubt then I will find out if I need radiotherapy as well.
I had my blood test Friday, must have been ok, didn't have to inject my stomach again, and I've not needed a blood transfusion and it seems the steroid have made me put on 10 kilos in 4 months of treatment
. Had my last chemo yesterday (hopefully), they even managed to get the cannula in 1st go toughest after effect so far to be honest, 1st time I've felt sick as I left Kings Collage, almost puked 3 times walking to the station and I've not puked once during the 8 sessions, 4 cycles of ABVD. Currently on the post chemo crash now.CT/PET scan booked for 17th then a meeting with the oncologist on the 21st, no doubt then I will find out if I need radiotherapy as well.
Thanks for all the positive vibes and comments, I think staying positive has helped me get through this part of the treatment.
Just looking through all my notes I had the most common type of Hodgkins Lymphoma, early unfavourable classical stage 2B HL, even that is fairly rare, on 1,700 HL cases a year in the UK, its funny how you go from knowing nothing about a deisese to knowing almost everything, stupid reed sternberg cells!
It all seems a bit of a blur since March/April when I was 1st diagnosed, The chemo has given me 1 bad week/1 good week, pretty certain I have no memory of some of the days straight after the session, but thats helped it pass quickly in my mind. Also ate fairly healthy, even when I had some mouth ulcers about half way through I managed to use my nutri ninja to make some shakes and soups, also managed to keep all my food down during the 8 sessions/4 cycles.
Its strange how some people are wiped out by chemo, and others by the radio, my lowest point so far was after 2cycles/4 sessions, I had to inject my stomach for a week due to low white blood cell count, some mouth ulcers (a bit of bonjela sorted them out in a couple of days) but had no need for a blood transfusion, and it seemed like a long way to the end of the treatment, but then you start counting down.
Now onto the blood test and CT/PET scan, consultant on then see what happens. I have break for some convalescence booked just before I go back to work. Hopefully to build up my strength and to put a gap between hospitals and work.
I've been fairly lucky with work, 6 months full pay while off sick, but HR have already sent me a letter 'reminding me' when I would drop to half pay. I had an meeting with my GP who originally sent me for the blood test and has been great, fairly long chat (20 minutes) she said ''I will write a note to your HR telling them you will need a phased return to work starting with 1 hour a day''
A piece of advice is if you feel like you have something not quite right go to your doctor, mine started with a cough in January, by 16th February I was sent for a blood test and started my chemo before the end of April, luckily mine was caught at stage 2B and only required 4 cycles, apparently the maximum is 12, not sure how I (or my veins) would have coped with the extra 2 cycles.
Stay positive and have a good weekend.
Just looking through all my notes I had the most common type of Hodgkins Lymphoma, early unfavourable classical stage 2B HL, even that is fairly rare, on 1,700 HL cases a year in the UK, its funny how you go from knowing nothing about a deisese to knowing almost everything, stupid reed sternberg cells!
It all seems a bit of a blur since March/April when I was 1st diagnosed, The chemo has given me 1 bad week/1 good week, pretty certain I have no memory of some of the days straight after the session, but thats helped it pass quickly in my mind. Also ate fairly healthy, even when I had some mouth ulcers about half way through I managed to use my nutri ninja to make some shakes and soups, also managed to keep all my food down during the 8 sessions/4 cycles.
Its strange how some people are wiped out by chemo, and others by the radio, my lowest point so far was after 2cycles/4 sessions, I had to inject my stomach for a week due to low white blood cell count, some mouth ulcers (a bit of bonjela sorted them out in a couple of days) but had no need for a blood transfusion, and it seemed like a long way to the end of the treatment, but then you start counting down.
Now onto the blood test and CT/PET scan, consultant on then see what happens. I have break for some convalescence booked just before I go back to work. Hopefully to build up my strength and to put a gap between hospitals and work.
I've been fairly lucky with work, 6 months full pay while off sick, but HR have already sent me a letter 'reminding me' when I would drop to half pay. I had an meeting with my GP who originally sent me for the blood test and has been great, fairly long chat (20 minutes) she said ''I will write a note to your HR telling them you will need a phased return to work starting with 1 hour a day''
A piece of advice is if you feel like you have something not quite right go to your doctor, mine started with a cough in January, by 16th February I was sent for a blood test and started my chemo before the end of April, luckily mine was caught at stage 2B and only required 4 cycles, apparently the maximum is 12, not sure how I (or my veins) would have coped with the extra 2 cycles.
Stay positive and have a good weekend.
fridaypassion said:
Sounds like you have great employers. I'm self employed now but while I was going through diagnosis and a couple of biopsy ops my old employers were absolutely awful.
Its shocking that in the 21st Century still act like this, do they really think that people will make this up, or is it all about profit? My manager lives just round the corner he popped in for a coffee and I showed him a letter from my consultant to my doctor, says 'I won't be at work for 6-8 months', so if I get back in 6 I will doing ok.I work for a big company, thankfully I'm just a number and sticking to my T&C's, and keeping my head down. I've been in jobs before that only pay SSP and never really thought about long term sick before. Its easy to be wise after the event though. I've said to a few friends I'm glad I'm not in that situation or self employed/ I seriously think taking 6 months off has helped me get up and go to bed at fairly regular hours, (chemo side effects excluded) eat healthy, sleep when I've felt fatigued etc.
Although I work shifts, with the public and my company has random drugs and alcohol screening, not sure that some of the drugs used would be accepted, also its kept me away from the germ carrying public.
@fridaypassion, I guess itblows the 'valued member of staff' etc out the water. Spoke to a friends wife who is a teacher, beat breast cancer she did pretty much the same thing once she was back at work left a job at a school she hated and went to work at one she enjoys working at. Sees like a lot of people change their outlook on life after this.
Realised that this is the 1st week since the start of April that I won't be having a needle or a cannula in my arm.
Although next week I have a nice injection of radio active sugar water and a blood test to look forward to
Realised that this is the 1st week since the start of April that I won't be having a needle or a cannula in my arm.
Although next week I have a nice injection of radio active sugar water and a blood test to look forward to
Hi. chemo finished (hopefully ) had a blood test yesterday, then a nice injection of radioactive sugar water for a CT/PET scan, for some reason felt absolute pants after and slept for about 3 hours when I got home.
Meeting with the constant on Friday, will find out then if the lymphoma has been beaten and if I need radiotherapy.
) had a blood test yesterday, then a nice injection of radioactive sugar water for a CT/PET scan, for some reason felt absolute pants after and slept for about 3 hours when I got home.Meeting with the constant on Friday, will find out then if the lymphoma has been beaten and if I need radiotherapy.
Quick update, Fridays meeting ended up being today.
I needed some more Omeprazole (for stomach acid) my GP wouldn't give them to me as the hospital hadn't written to them telling them I was taken them.
So phoned Kings, cut a long story short, was told they had my CT/PET scan in and could I go to this afternoons clinic. I was cr@pping myself tbh, met the oncologist, was told cancer was gone but they current 'best practice' is 3 weeks of radiotherapy to kill it off completely (even though there is 'only' a 10% chance of Hodgkins returning) so now waiting for a letter from either Guys or St Thomas hospital.
I needed some more Omeprazole (for stomach acid) my GP wouldn't give them to me as the hospital hadn't written to them telling them I was taken them.
So phoned Kings, cut a long story short, was told they had my CT/PET scan in and could I go to this afternoons clinic. I was cr@pping myself tbh, met the oncologist, was told cancer was gone but they current 'best practice' is 3 weeks of radiotherapy to kill it off completely (even though there is 'only' a 10% chance of Hodgkins returning) so now waiting for a letter from either Guys or St Thomas hospital.
Thanks, yes they said as I don't smoke, and not a woman the chances of a secondary cancer are much reduced, after radiotherapy, where as if I don't have it, its a 10% chance of a re occurrence if I don't have it, which would then mean a different type of chemo or a stem cell transplant.
The surgery said they needed a letter from the hospital stating that I was taking Omeprazole (what a difference that tablet makes) surgery told me to get a letter faxed to them and they would sign a prescription off, called Kings they said I may as well come in to the clinic as my blood test and scan results were in, also got my Omeprazole and some Co-Trimoxazole so it all turned out for the best
Funny thing will be if I have my radiotherapy at Guys hospital it will be a full circle as thats where Hodgkins Lymphoma was 1st discovered
When I was talking to the oncologist he said the 'best practice was discussed at a Lymphoma conference in Switzerland earlier in the year, a quick Google shows this link, if anyone understands medical terminology and is interested here is the link......
http://www.lymphomahub.com/features/highlights-of-...
the tab showing trials in the UK and around the world is quite interesting.
Edited by audikentman on Thursday 20th August 09:51
Thanks all, the postings on here since April have helped keep me going. Now to wait for the letter concerning radiotherapy.
I may even have to go back to work before the radio starts, I would have preferred to get it all done before I went back but hopefully they will find me a job pushing some paper round the office.
Firefoot said:
What fantastic news
I would definitely recommend getting the rads for that extra piece of mind. Yes you may get a bit tired from it, get some nausea and you may get a bit of a suntan around the area being treated but it's worth it in the long run. I only had the tanned look from my rads and avoided any other side effects so you may be lucky
Thanks for the tips, I'm looking forward to getting a tan, been avoiding the sun all summer so far, I burnt my nose at the start of the chemo after about an hour in the sun drinking coffee.I would definitely recommend getting the rads for that extra piece of mind. Yes you may get a bit tired from it, get some nausea and you may get a bit of a suntan around the area being treated but it's worth it in the long run. I only had the tanned look from my rads and avoided any other side effects so you may be lucky
Firefoot said:
Posts like yours about your surgery make me realise how lucky I am with my GP. The hospital regularly delay in updating them on my meds but they prescribe what I need with no fuss including steroids and omeprazole. One thing I do which probably helps is to take the packaging with me so I can show her the exact dose etc and the Velindre pharmacy label.
I can't complain about the Doctor, its 1 particular receptionist that seems to run it as her private practice. What a difference omprazole makes to stomach acid, (1 of the side effects of the chemo I guess) I tried the over the counter meds, they made no difference, yet 1 20mg tablet of these a day stops it.C0ffin D0dger said:
So after being diagnosed with the Sarcoidosis I got put on steroids to control it + the omprazole (also 20mg) as the steroids can be quite hard on the stomach. I'm like a new man, no indigestion, bowels back to normal, can eat foods that would have normally had me reaching for the Gaviscon during the night without any bother. Not sure if it's any good to you staying on it long term but as and when I come off the steroids I might ask the docs about whether I can keep taking the Omprazole.
Yeap, almost life changing, I stopped taking them for 1 day, just to see if I needed them, instantly the acid came back, also have to keep taking Co-Trimoxazole to stop infections for at least 6 months so may keep them both going. I was told last week that you can take up to 40mg per day with no problems.I have a friend who has been on them for 4+ years and has no bad side effects.
Another update, still heard nothing on the radiotherapy, I've now had about 5 months off (my T&C's are 6 months full pay per year then down to 1/2 pay for 6 months) so I want to keep 3 - 4 weeks back for when I have my radiotherapy, so I keep any reduction in pay to a minimum. Called work and asked for a return to light duties until the treatment starts, told I need a resumption medical due to the time I've had off.
Went to the doctors on Monday, had a chat with the Doctor, asked for her to say its ok for me to return to work on light duties, wrote the fit note out with, phased return to work, amended duties altered hours all ticked. Then phoned work to see if they had booked me an appointment with our company doctor, after a bit of faffing about met with the company doctor today, told him about feeling fatigue etc, he wrote a nice letter saying no more than 2-3 hours per day and light duties only with a further meeting with him in 1 month.
Does anyone know roughly how long I will have to wait for the radiotherapy to start?
Went to the doctors on Monday, had a chat with the Doctor, asked for her to say its ok for me to return to work on light duties, wrote the fit note out with, phased return to work, amended duties altered hours all ticked. Then phoned work to see if they had booked me an appointment with our company doctor, after a bit of faffing about met with the company doctor today, told him about feeling fatigue etc, he wrote a nice letter saying no more than 2-3 hours per day and light duties only with a further meeting with him in 1 month.
Does anyone know roughly how long I will have to wait for the radiotherapy to start?
Been an 'interesting' few days at work, walk in 20 minutes, drink some tea and chat, walk home 20 minutes, then feel completely shattered sit on the sofa and fall asleep for 2 - 3 hours.
Only on 1 tablet a day for anti-acid and 1 on Monday, Wednesday and Friday as an anti-bacterial, 1 month ago I would have been taking 11 tablets for breakfast post chemo.
Meeting at St Thomas Hospital on Friday about the radiotherapy. Feels like I can almost see the finishing line now.
Only on 1 tablet a day for anti-acid and 1 on Monday, Wednesday and Friday as an anti-bacterial, 1 month ago I would have been taking 11 tablets for breakfast post chemo.
Meeting at St Thomas Hospital on Friday about the radiotherapy. Feels like I can almost see the finishing line now.
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