Announcement

Collapse
No announcement yet.

Hodgkin Lymphoma - any advice?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Hodgkin Lymphoma - any advice?

    Hey guys and gals,

    Our daughter has recently been hospitalised and had a battery of tests done which culminated in a biopsy being taken and at the start of this week we had the diagnosis of stage 2b Hodgkin Lymphoma with a couple of very bulky masses which thankfully are contained in her upper torso/chest area only. Also involves several lymph nodes in her neck and arm pit areas but after a PET scan on Tuesday it is all above her diaphragm which is good news, well good news in context with what it would mean if it was below the diaphragm..

    She is a 22yr old and although the Dr's in RPH have told her what to expect during treatment does anyone on here have first hand experience from being treated with ABVD Chemotherapy at all?

    During treatment how did you fare with nausea and was there anything in particular you found worked for you ? The Dr told her to expect hair loss after the 2nd 'Cycle' of treatment, hard part for her as she has long blonde hair and loves it.

    She lives at home with us as she is still studying, as well as working full time hours but because she works with children the Dr has told her no work for at least 6 month during her chemo treatment..

    This has all come as a bit of a shock, totally out of left field and we are just about coping with everything thats happened over the last few weeks.

    Any advice on what we can / should do or avoid doing during treatment would be gratefully heeded.

    Day 1 Chemo is this coming Monday at 12pm.

    Cheers

    Tim.

  • #2
    I have no advice whatsoever other than to say that even though I've never met you, my heart is bleeding for you right now. I hope your baby makes a full recovery.
    Oh yeah, and cancer can eat a bag of dicks.

    Comment


    • #3
      Same as Desmo, Tim. I can't offer any advice, but my deepest sympathy for what you and your loved ones are going through now. I had someone close to me go through a similar situation, and all I could do was stay positive for them. It does help when the person you care about is down and out, both physically and emotionally. Mate, I truly hope your little girl makes a full and uninhibited recovery.

      Comment


      • #4
        All the best to you and your family as you work through this devastating news. I've got nothing to offer on treatment experiences but my thoughts are with you all and here's hoping for a speedy recovery.

        Comment


        • #5
          I had Non-Hodgkins Lymphoma in 2009 and went through 6 months of chemo, then in 2010 and 2011 had chemo every 2 months till Noveember 2011. I have to have a blood test every 3 months to see if it's coming back. Yes Non-Hodgkins comes back at least with your daughter the chemo will hopefully get rid of it, as Hodgkins is beatable

          It really depends on how the person handles it and what sort of treatment she is getting to how bad the hair loss etc. My hair used to come out on my pillow or if I put my hand through my hair, I soon learnt to leave it alone! I lost half the thickness of my hair, but not all of it. Mapthera is I think, a more gentle type of chemo? Though some ladies going through it at the time did loose theirs.

          Nausea was a problem, but it isn't something she wouldn't be able to manage, she will be given tablets to help combat that, she is lucky to only have it upper, mine was every bloody lymph node in my body You can 'feel' the chemo drugs go through your veins and sometimes it hits you straight away, other times it doens't, I think it really depends on how you are feeling on the day. Go in positive and you are more than likely to have a better result

          She should get in contact with the support group and learn all she can, there is a lot on offer. I went through Dr Baker and the Mount Hospital, private.

          I don't know about not work though? I continued to work and ride and the learner-newbie rides continued, I think it's all about balance, what she can handle, I wouldn't be doing full on physical work, but she would need to keep her mind and body active. I still swam 4 morning a week, but stopped when I felt weak or depleted.

          Please wish her the best and may the treatment be kind to her

          ABVD chemotherapy - Cancer Information - Macmillan Cancer Support

          https://leukaemialymphomaresearch.or...a/side-effects
          Last edited by Stoneville; 31-01-2014, 09:16 AM.

          Comment


          • #6
            fuck man thats tragic. best of luck and i hope everything goes into remission...
            Originally posted by Rich...
            You got me in trouble...

            Comment


            • #7
              All the best to your daughter, Irish.
              If she takes a leaf out of Stoney's book, you won't even know there's a problem and before you know it she'll be back to good health.

              Comment


              • #8
                Thanks Sandra thats exactly the kind of info I was hoping to hear. Not meaning I would wish this on anyone. Steoh has a real positive outlook about it all. In fact she is handling it a kot better than me & mum.. She is after all our youngest Always going to be the baby of the house. I too dunno why the Dr said no worj for 6 months. Possibly because her immune system is aready badly comprimised and she works with snotty nosed kids etc.. I too guess its going to be something she can fivure out for herself once she see's how her body reacts to treatment.
                She has a couple of very bulky masses in her chest that are pushing her blood vessles from her lungs around and pressing on he en treachia, hence the cough that she was sent to have investigated and led to the diagnosis..

                But look we are all (the family) coming to terms with whats going to be happening over the coming months and she is going in with the mindset that she is going to kick its ass and we will be right in there with her willing her on.. I will get her to have a good read on the links Sandra, thanks for taking the time to reply.

                We also welcomed our 1st grandchild into the family in December, a baby girl for our oldest daughter.

                Also thanks to the others that have replied. All heartwarming stuff & muchly appreciated.

                Cheers

                Tim ( and Steph)..

                Comment


                • #9
                  Best wishes [MENTION=5311]Irish[/MENTION] and glad you found some value here.

                  A friend has recently been through an experience with breast cancer (at about the time her husband dumped her and their son). Yep, the chemo was rough and she had little support (most of her family are still in India) other than that of friends - but she pulled through it all. She is a very determined woman, and it's good to see your daughter is also going in strong and has the benefit of all that love and support.

                  Kick its ass!

                  Comment


                  • #10
                    Originally posted by Irish View Post
                    22yr old daughter
                    Oh shit, I forgot.




                    Pics.

                    Comment


                    • #11
                      No advice...

                      But all the best to you and yours and all the non denominational positive energies I can muster towards a smooth and swift treatment and recovery.
                      Do you remember the good old days before the internet?

                      when arguments were only entered into by the physically or intellectually able.

                      Comment


                      • #12
                        Originally posted by Irish View Post
                        Thanks Sandra thats exactly the kind of info I was hoping to hear. Not meaning I would wish this on anyone. Steoh has a real positive outlook about it all. In fact she is handling it a kot better than me & mum.. She is after all our youngest Always going to be the baby of the house. I too dunno why the Dr said no worj for 6 months. Possibly because her immune system is aready badly comprimised and she works with snotty nosed kids etc.. I too guess its going to be something she can fivure out for herself once she see's how her body reacts to treatment.
                        Ah yes maybe

                        I was worried the whole 6 months of chemo, all the snotty nosed Engineers/Drafties I worked with as I started chemo in June. I never got a cold or anything and have been remarkably free of coughs and colds for many years now!! I honestly can't rmember that last time I was suffering from a runny nose etc.

                        I do find that even now I can only do so much before I stop, Andy thinks it's pretty funny/strange that I can swim a hard training session of 4kms in the morning, but not be able to wash and polish my motorcycles I manage to wash one, but finishing the job just takes too much out of me, sometimes even just pushing the shopping trolley from the shops out to the carpark leaves me with the shakes and no strength, sometimes I even get nuasea's, but I have some anti nuasea drugs to take and I'm fine.

                        This is something that she will need to adjust herself too, along with chemo brain, as this unfortunately is a factor. Some simple words will be lost in the brain, I can think of replacement words, but not the actual one, I even find I get words or letters around the wrong way. I try to keep the mind active and alert, but .....

                        Comment


                        • #13
                          Irish it must be a very difficult time for your family. As soon as the "C" word is mentioned by a Doctor I'd imagine it would be terrifying if it's to do with one of your kids.

                          An ex boss of mine had the disease about 12 years ago in his early 40's. He had the Non Hodgkins and it was quite aggressive . He made a full recovery after radiation and chemo. The chemo in particular knocked him around a bit and made him pretty ill. However the chemo drugs have improved a lot over the last 12 years. He's still free of the problem but undergoes regular testing.

                          Also, hopefully some medicos can chime in but my understanding is the Non Hodgkins is the bad one and Hodgkins is the "good" one if it's possible to use such a term for any form of cancer.

                          About Lymphoma - Lymphoma Research Foundation - Welcome

                          This website has some good information.
                          I'll be riding for you #52, my dear son, Cameron Taylor Elliott 1985-2009
                          2008 CBR600RR and 2010 GSXR750 Track Bikes, KTM530EXC Enduro bike wrist breaker

                          Comment


                          • #14
                            Originally posted by Scott52 View Post
                            Also, hopefully some medicos can chime in but my understanding is the Non Hodgkins is the bad one and Hodgkins is the "good" one if it's possible to use such a term for any form of cancer.
                            This is true, in as much as Hodgkins is either, you beat it or it beats you (though hopefully everyone beats it) Non Hodgkins (what I have) just keeps going into remission and resurfacing, well at least you know what is eventually going to get you, just sucks having it hanging over you all the time, hopefully the advances in chemo keep up and eventually win out.

                            I have hit the mark where it usually starts resurfacing, the last blood test had slightly higher protein levels, if the next test in March does as well ........

                            Comment


                            • #15
                              Hi Tim,
                              I'll try and answer this as best as I can,

                              Had Non-Hodgkins Lymphoma back in 2008. I am not really a fan of discussing, but due to the nature of this post i believe that it may help your situation.
                              They called mine a Stage 3 (Keep putting off getting it checked, thinking that i was Invicible at that typical age).
                              I was diagnosed with this just before my 18th Birthday, Whilst everyone was out partying, I was stuck in a hospital room every Friday.
                              Blood test every Friday, Week after Chemo, Rinse, Repeat.

                              Do not leave her alone after her first dosage.
                              It may or may not be the same as when i went through, It knocks your immune system out, You become really susceptible to getting sick. Getting sick in this scenario usually means a rush back to emergency and on antibiotics (Experienced this many time when i wanted to just be 18 for a change).
                              Do not see sick people, or allow them near her would be my suggestion, Let her friends know in advance.

                              Nausea is not really a problem these days, They just bump up the anti nausea drugs until it works, Start with lower stuff, and end up on higher stuff.
                              With hair loss, Honestly, Once its starts to go, Just shave it, Gets to messy on your pillow and becomes really depressing when you have a shower running your hands through your hair and finding clumps in your hands and it falls out anyway.
                              (Although, Being female, Could she turn hers into a wig now?)

                              There is no way to put into words how she will be feeling,
                              Support her, Ask more questions then just the "How are you feeling".
                              Expect weight loss. Try and avoid the Depression that comes with.

                              There is so much more that goes on that I struggle to put into words, hopefully this small amount helps.
                              All the best, Will be a Positive Outcome.

                              (also, on the brightest side, some of the nicest people I have ever met were in that hospital)

                              Also, should mention that I am in remission. 4 years now.
                              Last edited by J1NXD; 31-01-2014, 05:16 PM.

                              Comment

                              Working...
                              X