HODGKINS Lymphoma, anybody a survivor or current patient?

[overthemill]

I am at the start of my journey having had first chemo session. I am expecting 6 months' treatment fortnightly. Am on ABVD.

I wondered if any survivors had any stories to tell me about how they managed/coped and how long it took to be well again at the end of treatment. Am hearing so many mixed stories. I am 54 so older than lots on here and not feeling very typical hodgkins patient.

One specific query - I am a teacher and told not to work by oncologist because of the infection risk though obviously it's my own decision. GP and macmillan nurse agrees. But school are surprised.

But I have so many questions!!!!

Hi. I can't profess to know anything about Hodgkins but as far as working in a classroom is concerned, DF worked whilst having chemo. He would have an occasional day off after chemo if he was feeling rough but with an understanding school he managed to keep teaching.

i think its the specific regime and length of time which is why i was asking hodgkins people, tho this is all useful stuff! i believe each type of chemo is different.

Hello - yes I was diagnosed with hodgkins lymphoma is July 1999.
I also had 12 courses of ABVD over 6 months. I am also a teacher!
I had my chemo on a Thursday and was bed ridden until the Monday. Then I was fine until the next cycle. I didn't consider working - bigger fish to fry but it would be possible. I read, watched lots of films and rested. I also had to drink 4 litres water a day.
I had nodular sclerosis stage 2A favourable. I read too much about lymphoma!

I had 3 children after ABVD which surprised my consultant in London! Ha ha.
Good luck OP x x x

WWMM - thanks for that. well done for getting through. how long after chemo finished before you went back to work full time? my oncologist is saying no work because of the germ factor: chicken pox etc being rife with my age kids.

Hi - I finished early jan and was back mid feb. I then had radiotherapy but this doesn't really happen now. I worked full time through this, 'twas nothing after the chemo although different for every individual.

I had a massive lump in my neck that was reduced v quickly with ABVD. Magic stuff!

Can i be blunt?! If onc, Gp and MacM nurse all say teaching through chemo not an option, then school's surprise is just that - a surprise school will have to get over
:-). Have you not had chickenpox then? It's only a risk if you don't have immunity.

baskets chemo kills all your immunity to everything. so you are laid right open to any illness evenif you have been vaccinated/already immune. So measles,mumps, rubella, chickenpox, slapped cheek, TB, polio, the lot! I think but am not 100% that once chemo stops yor body 'remembers and can rebuild it but during chemo it all just get zapped good thing and bad things..:-(

Chemo drugs cannot differentiate between good cells and bad cells. They just kill cells. Cells which reproduce rapidly are most at risk. This is why bone marrow cells which produce blood cells (including the white cells which are the body's first line of defence against any type of infection) are so badly affected.

Because overthemill will be having chemo every 2 weeks, her bone marrow will have little or no time to recover while she is having the treatments. Once the final chemo is out of her system, her bone marrow will recover and she will regain her natural immunity.

I do know all that, you know :-). All I'm really saying is if your medical team recommend you don't work during chemo then it's a no brainer. And the school will have to lump it. in the nicest possible way. of course! And you shouldn't feel guilty about being off even if you feel okayish on certain days. I was really just being nosey about the chickenpox question - most people will only get it once. I didn't want to say about the risk of catching other things possibly being greater, esp in schools, but you are clearly aware of all that. And you are going to be signed off, overthemill, so much less risk for you in general.

I think the risks for teaching staff and health care workers on chemo generally means not working, though a few do and are okay. BUT, as someone said further up, being on chemo for hodgkins and others like that, make it a very specific situation - and it's possible the school isn't aware of the difference and are thinking all chemo is the same which it isn't. Have I redeemed myself now ? :-))

BTW, I think different people recover differently AFTER chemo, in terms of immunity. It's probably a case of wait and see. And can go in the 'worry about that later' category. I think there are lots of factors involved in that.

Jings, just read above and feel need to clarify further (as I have too much time on hands and/or am worried about being misunderstood again). Note to self - butt out in future and be more careful while posting! Re chickenpox, if a person did get chickenpox while on chemo, then he/she could be very ill indeed, so definitely not underplaying that possibility. All the best for your treatment, Over, I'll be following your progress elsewhere ;-).

If you've been advised not to work - don't. Ignore any raised eyebrows you may get from school - the very people who have expressed surprise will be the ones who in your shoes wouldn't consider setting foot in the classroom whilst undergoing chemo. Schools are a breeding ground for infections and your immune system will definitely be compromised during treatment so don't put yourself at unnecessary risk. The experts have given you their advice - take it and don't feel guilty

DSIL was diagnosed in June 2010 with hodgkins. She had chemo every week and was off work for the duration. Not sure of the term but she was clear of it by April 2011. She developed aplastic anaemia from all the chemo tho (which is a very rare complication) and had a BMT in April 2012. She is on the road to recovery now tho and doing very well.

Should add she was stage 4 hodgkins when diagnosed. It was very scary when we found that out.

My DD was diagnosed with HL last September, She is a medical student and avoided lectures etc whilst on chemo. She is now doing brilliantly. I had Breast Cancer in June 2010 and did not return to school until Jan 2011. My oncologist/GP said teaching was one of the riskiest jobs and refused to sign me able to work. However I was lucky and when I returned in Jan 11 I was allowed to work a 3 day week for a term. As a result I have not had a day off sick since I returned, it is much better for your pupils for you to be away for a block of time and then be back properly. Your priority is your health and dont allow the school to 'guilt' you into putting your health second. Remember the cost of supply will not come from the school's budget, the LEA will be responsible. Good luck.

Thanks to all, really helpful advice! I think that I now fully understand immunity and how it works.
baskets i took no offence and never thought for one second you meant any. you were helpful :)

i am interested in the recovery rate/how long it takes and know that this differs for different people but wondered if there was any hodgkins' people who culd give me an idea. My bil who is a GP said at the weekend that it was anything from 6 weeks to 2 years for lymphoma for return to full health (although looking back I reckon its been a couple of years since I had that!) after end of active treatment. Anybody any info???

I had Hodgkin's lymphoma stage 2 when I was 21, nodular sclerosis type. I had chemo for 6 cycles with full mantle radiotherapy every day for 1 month half way through. I had bleomycine, vincristine and methotrexate. They no longer give full mantle radiotherapy because of the increased risk of breast cancer. I went onto have 2 children and I finished treatment 22 years ago. I had my first treatment in November and the last in July. I had follow up every month, then every 3 months, then 6, then 9 then 12 until last year when I finally was discharged. Apparently my rist of lymphoma now is probably no higher than anyone else's although because of the radiotherapy, I have an increased risk of breast cancer (and pretty much any other cancer, as my consultant very kindly told me!).

My treatment was not bad. I was able to continue at college, although I did have to repeat the year as I wasn't very functional for a lot of it. I got unexpectedly depressed after I got the all clear - apparently quite common as you're expected to fall back into your old life and actually you can't quite do that. My immunity took a few years to get back up to scratch - I was prone to bugs etc and got shingles a couple of times. But nowadays it's pretty much like that of anyone else.

I'd say, if all goes smoothly, then your physical recovery will be reasonably quick, but you will need to take care of yourself for a few years after.

I would say that if you get shingles or come into any contact with chicken pox whilst on your treatment you must get to hospital as it can be quite dangerous for people with low immunity. You can be treated with an anti-viral, which is most effective if you start taking it as soon as possible to getting ill/exposure. I have had shingles twice, once whilst on treatment and once a couple of years after. Both times I had the anti-viral.

Obviously my treatment is fairly out of date these days, but Hodgkin's is one of the cancers that is very successfully treated and has a high 'cure' rate and whatever they've discovered since i was treated will probably have improved things a lot. Good luck with your treatment - I'll watch this with interest!

I?m about the same age as you are, and I had HL in 1985. I was on chemo, with a month 1 and month 2 cycle, for 4 cycles so 8 months in all. I recognise the names of many of the drugs in the various protocols, but what I had doesn?t seem to fit into the current regimes. However, the drugs seem to have worked and I haven?t had a recurrence.

I did find that the treatment affected many people differently. I had a friend (met at a clinic) who had a completely different set of side effects to me, in that he was very nauseous whereas I only vomited about twice in the whole treatment, and that was probably more due to overindulgence in (soft) drinks and food!

I did continue working in an office, but found that I was more susceptible to colds and flu, and when I did get one it knocked me flat. Also chemo was postponed if I did have colds or flu. I did try to keep working (being young and a macho male!) but my current inclination would be to sit back and concentrate on getting better, whilst reading all the books I?ve meant to over the years. There wasn?t a noticeable change in my general health over the period, but after finishing the chemo I did notice that I was more unfit than I had been. I suspect that this was due to a combination of having the drugs and no exercise over the period. I did get back to previous levels in about 6 months, without making a conscious effort. But to put it in context, during the treatment and after I could live a normal life, but I did have second thoughts as to whether I should do such things as run for buses.

When I had HL, I was told by a doctor that if one was going to get a nasty, HL was the one of choice as the cure rates were so high. So please remember that my treatment is not the current one of choice, and that there have been advances in the past 25 years, both in increasing cure rates still further and reducing the side effects of the chemo.

All the best!

thanks oneway and careless, I missed these last week as having 2nd chemo. i am really struggling with side effects and know I need to get these under control. I do wonder how it is getting HL at 54 rather than 25 years ago (oh to be that age again) and feel (though at very low point in treatment) that it will be almost impossible to imagine getting back to work - i think it's likely i have 'had' HL for the last 18 months as that co-incides with having truly dreadful tiredness and inability to shake off any bug at all. S I can't quit see myself bouncing back all fighting fit to work next February. I do want to work again but it feels an impossible mountain to climb

I was lucky in a way. I was a post grad music student and through that year I couldn't really carry on properly, but I went along to what I could and it kept me sane. My teacher would play to me when I was too tired to play or I hadn't had time to practice. I did do another year after to make up for it. I don't think it would have been easy for me to carry on with a job though. Lots of unexpected things happened which would have made work difficult as I was unreliable, like when the treatment kicked in and my blood counts were very low I got neutropenic (when you have no white cells so are vulnerable to infection), so I had to go into hospital a couple of times until my counts came up. A couple of times I needed blood transfusions as my red cells were very low. And I was tired.

I think you have to take each day as it comes and see how you go week by week. Some weeks you'll be great, others not so much. It's tempting to want to carry on where you left off, and for some people they can slot right back in. For others, it takes time, so I'd say be patient with yourself and look after yourself for now - and see how you feel when the treatment is done.

I'd recommend the lymphoma association if you're into that sort of thing - lots of useful stuff to read and it really helps to know people who are going through the same things as you. Not for everyone I know, but I found it very helpful. www.lymphomas.org.uk/

oneway thanks for this, interesting to hear how others coped. Can I ask how long before you felt 100% 'recovered'?

i have looked at lymphoma association but they don't seem as friendly as on MN!

I'm not sure really. I think it took me a couple of years to get better immunity - I got shingles after I'd finished treatment too and the doc I saw said it would take a few years for my immunity to get to that of someone who hadn't had hodgkin's. For me, I found it unexpectedly hard to get over the emotional bit of it. I was fine emotionally during treatment, but got really low when I got the all clear! Bizarre. But apparently, it isn't uncommon. It's part of suddenly not having lots of appointments and attention and people expecting you to slot into your old life as if you've not been ill, when it's actually hard to do that when you've faced a life-threatening illness. I found that I had to give myself a lot of allowances to get over that and it took me about 12 months to pick up from that. Realistically, I think it took me about 2-3 years to recover from everything, but for other people, they'll take less time. I think you have to be patient with yourself and just see how you feel - no two people will react the same way so there is no right and wrong - you've just got to see how you feel at the time. Hope you're feeling ok from your treatment today!

I?m sorry to hear that the side effects are hitting you hard. Speak to your doctor about them, as there may be something that they can give you to help you cope. However, don?t think that it?s going to be as bad every time, as I found that the drugs could affect me differently on different occasions.

You will feel better in the future. I had the attitude of looking on the chemo phase as something I had to go through to get well again. When I finished the chemo, I took the view that my body will start to get back to normal, and that every day l would make progress. It was also helpful to me to feel that I was doing something to help myself. As I had been told that HL meant that cells in the lymph glands became giant cells, I envisaged these as balloons, and every time I had a spare few minutes I focussed on these cells and imagined myself bursting them to destroy them. Sometimes, I even played Tchaikovsky?s 1812 Overture to myself in my head, and timed the bursting of the giant cells with the cannon explosions in the finale. (and if you do this too, it might be worthwhile to wait a couple of decades before confessing it, or your friends may think that you?ve gone quite mad!)

Hope this helps!

Carelessdad, thankyou. I feel bit better today but so not looking forward to Wednesday when it all starts against I can't get passed the dread really. Doesn't help that term starts next week and I'm missing it all!

Hi forum. I'm new to this. I don't currently or in the past have lymphoma it's just one of my biggest worries in life. I forever check my glands and if one swells I worry for weeks. 6 months ago I was I'll with a little cold and one of my glands had swollen. 6 months down the line it's still swollen all though now painless. It's very squishy and mobile and hasn't grown? Should I be worried. I'm also full of cold again and all the glands under my jawline have sweet and are slightly tender. Should I be worried or am I just being stupid yet again