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Hodgkin lymphoma

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

Lymphoma

No. of entries: 15 | Posted on 10 Sep 2011 08:55

Lymphoma

  • Hi, I'm new to this site and just need a bit of advice.  My daughter has a lump in her neck, we've been to the hospital, had ultrasound and x ray. Doctor there said nodes in chest showing up and that we should see her GP urgently for referral.  This was Friday 5th Aug. Saw GP 8th Aug who said would refer her urgently for biopsy.  Now Thurs 11th and heard nothing.  I don't know if I'm being alarmist but it seems a long time to wait. I had breast cancer myself 3 years ago and things seemed to move more quickly than this.  Can anyone advise whether we should chase this or wait a bit longer?

  • Do what I did for my wife and keep on their backs luv. If you don't bang the drum, they won't either! GOOD LUCK AND KEEP US POSTED XXX

  • Thankyou.  Hospital phoned today, she has to go to ENT apparently for them to check out the lump!!! and not until 19th August.  They say that GP can't ask directly for a biopsy, she must be seen first by ENT, even though Doc at Ultrasound and Xray thought it was serious enough to be referred as urgent!  I know that things in the NHS have to be done a certain way, but sometimes it feels like we're being given the run around.  Now having waited a week for this to come thru, she now has to wait another week, before maybe having the biopsy.  This is all making a worrying time worse. Thank you for coming back to me, I will keep up the pressure and I will let you know how it goes.

     

     

  • Hi there,

    My journey through the various steps to finding out what my lumps were was also a slow one. Like you, I felt that there were too many hoops to jump through before getting a diagnosis. My parents often intervened to bring appointments forward and all in all, they sped my 1st chemo date up by a couple of weeks. Proof that pestering does work!

    Fingers crossed things go as well as possible for your daughter.

    Steph x

  • Nice one Steph,

    I have had to bang the drum again, the hospital are fastracking the results. They told us that we would have to wait 20 days..... Not on you life! Needless to say that treatment should... start within 14 days. 

    If I can ask, are you guys ok keeping progress on here and we can maybe "brainstorm" idea's whenever poss?

     

    Hope you are all keeping yer chins up,

    SCOTT

  • Hi gang

    My GP was too laid back about my single lump when I went to him on 3rd June. A week later I had 4 lumps and insisted on urgent referral. I then called the GP and hospital until I had an appointment for the ENT on 8th July. Ok, I was not waiting 2 months, but still, is that really *urgent* ?! I had a biopsy and ultrasound on the 27th July and my results on the 5th Aug - HL. My chemo starts on Wed this week.

    So, I totally understand your frustration and recommend ALWAYS beating the drum and pestering everyone!!!

    I have been given a list of practical things to do/take/wear etc - buy a baby toothbrush in case get tender mouth; buy antiseptic mouthwash. take Vit C & D and Echinacea to boost immune system. Buy mints in case get funny taste in mouth. Take layers with you when having chemo in case feel cold.

    Any of this you have heard before? Any other tips anyone has?

    Love and Hugs to you all

    Ems

  • Hi Ems,

    I'd check with your consultant whether you can take echinacea because mine told me to steer clear of immune system boosters like that.

    A few chemo day tips from my experience:

    1) If having chemo via hand cannula, make sure you and your hands are nice and warm as this brings the veins up to the skin, making them easier to find. I have ridiculously tiny hand veins which could only accommodate kiddie-size needles, so I quickly learnt to arrive with hot water bottle in tow!

    2) Take something that smells nice with you to hospital. Even to this day, the various smells of my chemo ward still makes me nauseous... but having a little bottle of essential oil and a handkerchief near my nose always helps. Lemon was my favourite.

    3) Take drinks such as lucozade or juice to both give you some energy and help flush the chemo out! I couldn't eat at all during or immediately after chemo so some sugar is in the system is good.

    4) Have some relaxing music with you. Especially towards the end of my 6 months of chemo, I found myself panicking / being anxious a lot when in hospital & I having something nice to listen to really helps.

    Good luck tomorrow!

    Steph x

  • Thanks Steph! :)

    That's fab advice, and I will check witht the doc about echinacea etc.

    I will let you all know how it goes!

    Ems xx

  • Hi there Steph and Scott,

    Thank you, I was beginning to feel like we were in the Twilight Zone.  My daughter has just had her consult with the ENT Docotr, and he said she would have to have an appoinment for another Ultrasound and XRay, so they would know where to go to for the Biopsy!!!!! Arghhhhh!!  This apparently could take another two weeks.  It made no difference when she pointed out that we had already waited two weeks for this appointment.  Daughter exremely unhappy and me fuming!!! Tried to see anyone from Mamillan Cancer nurses, but no-one there.  Went to PALS, saw a really helpful guy who gave us a name and direct line number for one of their Cancer specialists. He said go back to your GP and get him to phone this guy and get things moving, because by now we should have had a diagnosis.  I was really angry by then but there literally was no-one there to get it off my chest to. Then ten minutes after leaving the hospital, low and behold, the consultant calls and says Sarah is being referred immediately for surgical Biopsy, sometime in the next week.  Not sure that seeing the PALS guy started this going, but at least it has now become as urgent as we were told orginally!!!   I'll come back to you with another instalment from the Twilight Zone, no doubt, but so far so good.  Rant over, thank you all for listening.

    Julie

     

  • Hi Ems,

    When I was having chemo I had a very sore mouth, and found that Iced Lollies helped really well.  Also, try a mouth wash that doesn't have Alcohol in it.  I was given Corsodil and it really stung!!! Agree with the other comment about hot water and veins.  Mine were puny and they always went for the back of the hand, so soaking them in warm water beforehand helped. I also agree about the smell, even now hospital smell reminds me of the Chemo.  I bought loads of diffusers which took my mind off the smell.

    It seems like a long journey, but you will get through it, I did!! Hope all goes well, we're thinking of you.

    Love Juliexx

     

  • Hi Scott,

    I think that's a great idea.  Through all of this you tend to feel like you're in a bubble and life outside just goes on by.  Anything we can do to help each other get through has got to be good. Count me in!!  Maybe we should be sending these posts to the hospitals concerned so they can see how much extra we, the patients and families have to do, just to get where we are promised we will have no problem getting.

    Keep up the good work.

    Julie xx

     

     

     

     

     

  • Hi Julie -

    well, I had a very odd taste in my mouth and I felt ''greasy'' all over the next day, and very tid by 7/8pm the same day, really light headed on Friday, but back to normal today ... I will get in some ice lollies for next time just on case, thank you for that suggestion! I have been eating mints and applying flavoured lip salve and drinking tonic water, seems to have helped..?

    I hope your daughter is seen by everyone sh eneeds to be, as soon as possible!!

    Wishing you all the best and sending hugs xx

  • Hi Cariad9,

    I had the same funny taste in my mouth and had the same greasy feeling and was also very tired!!! Having worked full time for over 25 years and never felt like that, it was a bit of a shock!! But like you the next day I felt better.  Thank goodness it was only once every three weeks. I also tried the sweets and they really helped, (in more ways than one!!).  I think anything you can do to ease all the horrible symptoms is fine.  No-one but you knows how you feel and react, and what works best for you.  I dont know if they still do it but at Charing Cross hospital they gave us a big basket of bath and skin goodies, which was really appreciated.

    We have just received a letter from the hospital, Sarah's going into hospital on the 5th August for the biopsy.  It's under general anaeshetic on the day ward, so she should be done and dusted by lunchtime.  It still seems a long time to wait.  Apparently the results of the biopsy will not be known for up to 5 days.  She's due to go back to work in early September (she's a teaching assistant) and now she's worried that she'll have to take lots of time off work, which won't go down well, as she only started in June this year. Luckily she has her partner and I live close enough to be able to pick her up and take her, if it comes to Chemo. Somehow we'll work it out.

    I will keep you posted on how it goes with Sarah.  Thank you for your support, and good luck with your treatment.  It has been great to talk to others going through the same thing.

    Love and Hugs

    Julie

     

     

  • Hi, I'm new to this site too and my symptoms sound similar to your daughters.  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 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.

    If you hate the waiting game as much as I did then I would chase it up and get an answer because that was the worst for me.  I have accepted it a lot quicker knowing I know the answer but wouldn't be starting treatment if I hadn't have asked to see a doctor again.

    Wishing your daughter all the luck

    Emily

  • Hi Emily, funilly enough they referred my Mrs for anaemia and I had found a search engine online, put all the symptoms in and it came up with Hodgkins. Upon referral the consultant checked, did an ultrasound and when she pressed on Lisa's lymph nodes in her thigh, she nearly leapt of the freakin table! BUT.... she didn't investigate any further. Instead she continued to diagnose anaemia and put her on iron, folic acid etc etc. The nurse even said "Well done, YOU HAVEN'T GOT CANCER!!!!!!!". How so very wrong they were.

    When Lisa was confirmed with Hodgkins, they tried to put her under the same haematologist. Needless to say I stopped that.............

    Trust me when I say that you have to push and press every button possible to make sure you get treated appropriately because if you don't, they won't!

    Good luck hun and please keep us posted with your progress!!!