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26 years old and diagnosed with non-hodgkin lymphoma

ConnieJ
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Hi all

I was recently diagnosed with non-hodgkin diffuse large b-cell lymphoma. I'm 26 and just about to finish my masters degree, I have no symptoms. I went to the dentist because my tooth was hurting and when they took an xray they saw something in my jaw. Many more CT scans, MRIs and a biopsy later, they told me it was cancer. Obviously this has turned my life upside down (as i'm sure it does for anybody!) but I am terrified of the treatment, which starts on Monday. I will be going through R-CODOX-M/IVAC chemotherapy that requires me to be an inpatient in hospital on and off for a few months. I've never been in hospital before, let alone stayed over night! I have a lot of anxiety and sleep problems so i'm worried I will just crash and burn while i'm in hospital. I'm afraid of being away from home and my partner - having the routine and comfort at home is one of the ways i've managed to control my anxiety over the years.

Does anyone have any tips for being a chemo inpatient? how to keep yourself busy/relatively happy while being away from home for so long? not being around your loved ones? how to accept that things are out of your control?

Thank you 

Connie

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    I'm so sorry you've had this news Connie. I've also got non Hodgkin's lymphoma (age 29). It's certainly not easy to deal with but I can try and give you some advice for dealing with chemo. It mostly made me sleepy so I didnt have to occupy myself too much but I do recommended downloading some things to watch/listen to while in hospital. Personally I found chris and Rosie Ramsey's podcast hilarious but each to there own. As for dealing with the anxiety speak to your cancer nurse about this and they can offer support to you. Just make sure you are sharing your feelings with someone. 
     

    good luck with your treatment x

  • Offline in reply to Lila29

    Hi Lila29

    Thank you for responding! it's good to talk to someone around my age about all this. How far into treatment are you now? Podcasts are a good idea so I will be sure to look some up before I go in. 

    Thank you for your reply 

    Connie

  • Offline in reply to ConnieJ

    No problem. I've finished my chemo and I'm about to start radiotherapy. Unfortunately the chemo didn't work so we will have to wait and see what happens after radio.

     

     

  • Offline in reply to Lila29

    Wishing you all the best x

  • Offline in reply to Lila29

    Hi Lila and Connie

     

    how are you both doing now?

     

    I had 6 rounds of R Chop for a large Primary Mediastinal Lymphoma. The chemo worked pretty well and got rid of the vast majority of it, I am now going to have radiotherapy to hopefully finish it off.

     

    my doctor seems happy with progress and feels that the radio therapy should do the trick, but I do feel gutted that the PET wasn't completely clear (although is was done 2 weeks after chemo so I suppose there is a chance that it could be a false positive).

     

    Did the radiotherapy work for you?

  • Offline in reply to Boris16

    Hi 

     

    unfortunately radiotherapy did not work for me as the lymphoma was very aggressive. I've since gone on to have three rounds of rgdp chemotherapy and a stem cell transplant which I'm currently recovering from. It's not been easy but my last scan showed no evidence of disease! 

  • Offline in reply to Lila29

    Hey Lila

     

    Thanks for your reply.

     

    Sorry you've been through so much, but it's all been worth is as you are now in remission which is fantastic, so pleased for you.

     

    My Mass is 90% smaller than it was, so with a bit of luck the radio should see off the last 10% .


    Again, really pleased for you.

     

    Best Wishes

    James

     

     

     

  • Offline in reply to Lila29

    Hi,

    I am really sorry to hear you have lymphoma and hope your treatment has gone well. I wanted to ask because I'm 26, I have two lumps on my neck and have been waiting since July 2020 for an appointment at the hospital because of covid pandemic and noticed I have a small lump at the bottom of the left side inside my mouth. Did you have a lump when you saw the dentist? I'm getting blood tests next week and I'm just quite worried about not been seen yet and if my lump in my mouth might be what you have had and whether seeing the dentist for an x ray to check.

     

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