Hodgkin lymphoma

A group for anyone affected by Hodgkin lymphoma to get together, ask questions, share experiences and support each other.

Just diagnosed and first chemo next week

No. of entries: 20 | Posted on 10 Sep 2011 8:13 PM

Just diagnosed and first chemo next week

  • I found a lump just above my left clavicle bone in my neck and a couple of days later one came up in my right armpit.  I went to the doctors and they gave me blood tests straight away and said they were checking for leukemia.  However my bloods came back next day abnormal but non urgent and asked if I could make an appointment for a weeks time.  However I was a bit upset as the doctor had scared me earlier with Leukemia so I asked for a follow up by doctor who then sent me for x rays which showed swollen glands in the chest as well.  I then went for an ultrasound scan which showed that the lump was a gland and that it looked abnormal so I was being referred to the ENT specialist. 

    If I had made that appointment for the weeks time the doctor would have seen that I was a bit anaemic and put me on iron tablets and I probably would be none the wiser for the time being as I have no symptoms at all to say that I have anything.

    After seeing the ENT specialist he sent me for a biopsy on the neck gland and 5 days later it was confirmed Hodgkin's Lymphoma but I don't know what stage yet as I only had my PET scan on Thursday and waiting for results on Tuesday and I start Chemo on Thursday.  Don't really know what I'm expecting and how I'm going to react to it and desperate to stay active etc.  Any advice would be very welcome!!!!

    Thank you


  • Hi Emily, nice to meet you!

    So pleased you asked fo rmore urgent referral, so did I!

    The good thing about Hodgkins Lymphoma, the consultants told me, is that whether stage 1, 2, 3, or 4, it responds just as fast to chemo. It is one of the easiest cancers to treat.

    Everyone reacts differently to chemo, but there are a few tips that can help us all - I am about to have my 3rd chemo next week. Drink iced water (freeze it night before) during the chemo treatment as it can help stop you getting a sore mouth - I haven't had a sore mouth so far. Arrange help from family or friends for shopping and houswork/laundry, because chemo WILL make you very tired, if only for a couple of days after treatment, so you will need some help. On good days you must still pace yourself carefully so you don't get more tired; chemo depletes the white blood cells which affects immune system and your energy levels, so a short walk is good, excercise is recommended if it is light, but just as inportant is rest and naps! Ginger tea and/or biscuits may help if you feel nauseous - I haven't felt sick so far and they give you good anti-sickness tablets too.

    Some people do not have a bad reaction, others get very sick and tired, it is very much an individual thing, BUT what DOES help is being positive and keeping your sense of humour; it is important to acknowledge when you feel scared, sad or cheesed off, and if you can keep positive in between, it helps the frame of mind and I think it helps to kick cancer's bottom too! ;)

    It is a surreal time, and I found being on here has been an absolute boon, I joined forums and chat room and started writitng  adaily blog/diary which helps me keep track of how I feel and what's going on! Add me, and others, as a friend when you're ready, if you want to, explore the site, and good luck with it all - sending you huge hugs !

    Em xxx

  • Hi Emily :)

    As above.... the staging isn't very important so don't worry about it. I was 3a with spleen involvement and the ABVD chemo blasted it good and proper!

    So, some advice from the top of my head:

    1) Take something to entertain youself with on chemo day as there is nothing worse than sitting there with your mind doing overtime out of boredom. Any distraction will do.

    2) Be vocal about any of your worries, concerns or questions & do not be afraid to ask WHY (especially with doctors). Once, I was afraid to question a registrar's decision not to give me immune-boosting injections after chemo when my white blood cells were on the floor. That was Friday - Monday I was admitted with an infection. So... clammer for what you want.

    3) Do your best to get on with life and don't let Hodgkin's get in your way. Set yourself little goals & plan treats so that chemo doesn't take over.

    My idea of chemo was a very grim one before I had treatment for HL, but looking back it wasn't half as bad as I'd thought. My side effects weren't too bad - tiredness for a few days after chemo, some nausea (mainly anticipatory) & occasionally some vomiting, about 4/5 of my hair clung on for dear life so I didn't bother with wigs/scarves.

    Best of luck to you this Thursday.

    Steph x

  • Hi Em and Steph,

    Nice to meet you both, thank you for your replies, I obviously am a bit apprehensive about Thursday but only in as much that I'm a really outgoing person who likes to be doing something all the time!!!! In a way I suppose that's a good thing as I am really positive too.  I find out the staging tomorrow, I know it's not much difference what stage you are but it's really weird knowing that I can't tell myself from my own body!!!!

    Thanks for all the advice for Thursday I will be following advice and hopefully not have too many side effects, we'll see!! The nurse asked if I suffered from sickness with my girls so I'm guessing I may be sick with it, if it has anything to do with it?!

    It's great to have people to discuss things with actually, didn't think it would be but it's interesting to hear other views etc.

    Thanks Ladies!!


  • Hi :)

    It IS a good thing, it will see you through this whole episode, which can be quite surreal, so far I haven't been ill, just exhausted for a couple of days and then more tired than usual - for example, one Sunday I tried washing up AND hoovering, and had to lie down lol!

     Expect the unexpected, because we all react differently, ask questions, yes, very good advice, and ask here too, and vent, laugh or shout here as well!

    I have LOVED being here and found it really helpful, glad to have you with us despite the reasons why!

    Ems xxx


  • Emily (Rainbow),

    I think you're right about why the nurse asked about any previous morning sickness. Everybody has different trigger levels for nausea so if you did have it then you're likely to feel it when you have chemo. BUT....... the anti-emetics are effective (especially ondansteron in my experience) so it shouldn't be bad.

    Steph x

  • Hello all,

    I am new here and have finally jumped in! I have had my second chemo am doing ok. Emily inspired me to contribute. Hope you are ok.

    Anti-sickness drugs seem to  be doing their job. Feeling a bit tired sometimes. Keeping the dreaded constipation at bay with Fybogel!!

    So experienced HLers, I have been told that this chemo business is going to make me more tired so enjoy it while it  lasts! Any thoughts?

  • Hello HennyHen,

    Welcome to the forums!

    I presume you're having ABVD chemo? What I experienced was a gradual buildup of side-effects throughout the 6 months, such as the tiredness as you mentioned. I made sure I slept properly at night & had rests during the day as needed so I coped OK with it. Towards the end of chemo I'd have about 2-3 days of being lethargic and a bit nauseous after having a session, opposed to about 1-2 days at the start. I suppose the chemo builds up in your system after repeated doses so it makes sense really.

    Laughing at the term "HLers"! :)

    Steph x

  • Hello Hen!

    Good to meet you! I just had my 3rd chemo today, and like you, I'm finding the anti-sickness tablets working well.

    Yes, getting moe tired as the weeks go on - I have my ABVD every fortnight, the weeks in between feel more tiring, and the 48 hours after treatment day are the most knackering for me.

    Rest, sleep, nap, if in work take rest breaks or go home if you can, and generally scoff vitamins and look after yourself!

    Love, Ems xx

  • Hi all, and hi Hen,

    How are you all? I went for my results yesterday from the PET scan and it came back as stage 2a which in a way i was relieved even though I know it doesn't make much difference but I hated knowing that I didn't know what was going on in my body and I knew where my lumps were and I wanted that to be it as I was aware of them and it was.  I asked the doc if there was anyway of knowing how long I'd had it and he said months maybe a year - such a strange feeling, especially as my youngest little girl is only 15 months!!

    I have my first chemo tomorrow, I'm actually feeling ok about the whole situation as I'm quite a 'laid back kind a gal!!' but obviously feeling bit apprehensive and the not knowing of how it's going to affect me is strange but I'll find out over the weekend won't I!! Thank you to all of you for your support and advice, I think I will be on here quite a lot catching up with all of you and relating to you as although I have great family and friends, you're all the same as me so it's nice, thank you.

    Keep smiling :-) !!

    Emily xx

  • I've just realised I have written a lot of stuff that I wrote in my last post!! Am now laughing at myself!! xx

  • Hi Emily -

    Same stage as me then ;)

    I think I had mine a little while, as what I thought was my neck getting fatter as I put on weight turned out to be lumps!

    I hope your chemo goes as smoothly as possible, I had my 3rd yesterday and am feeling alright apart from the tired/wiped out feeling, which is cope-able :) Let us know how you are when you get a chance.

    As for repeating yourself, that's good practice for what the others told me is called 'chemo-brain' - bit like being pregnant where you go a bit vague lol!

    Big Hugs!

    Ems xxx

  • Hello Ems, Emily and Co

    Looks like we are the 2a stagers!

    Glad I am not the only one telling people things twice. I like the term 'chemo brain'. Now my youngest is 2 I can't really claim 'pregnancy brain' anymore - so now I have an alternative! Not usually too dippy. However as not working while having treatment, not using my brain as much as usual is defo making me less brainy!! I trying to do lots of puzzles, but am quite rubbish at Suduco - or however you spell it!

    I probably don't feel much more tired than usual, as a mum or 2 and 5 year old and full time teaching job - is it bad to be enjoying being off work because I have cancer?

    Yours about to make chocolate brownies


  • Hi Steph and others HLers who welcomed me!

    Yes having ABVD once a fortnight. Sleeping well (we bought one of those Tempur beds a few months ago and sleep is a joy!) resting when I need to.

    So you've done 6 months chemo. How are you now?

    Fellow HLer - Hen x

  • Hello Hen :)

    Suduco eh? I prefer Sambuca, but will have to wait a few months ;)

    I have 3 kids, all girls - Hormones R Us! I used to teach, as a tutor in college, funding disapeared, new job now thankfully! Fatigue is more noticable after a few chemo's I have found ; and I am accepting ALL help offered!

    Enjoy the time off for definite, I'm back in work during it all but p/t instead, with flexibility to go home whenever I feel like it which is good - I say enjoy it fully because once you're back it won't feel as though you've been away! ;)

    Chocolate brownies you say? Ooh you tease! Nom nom nom as my kids say!

    Em xx