B EAM

Has anyone  had beam chemo therapy 

My partner has had 6  sessions with rchop  and has been told its not worked very well and he will have to  have intense beam     staying in hopital  . He has two diagnosis   this will start in February 

T cell lymphoma  stage 4 

Anaplastic large  cell  stage 4

They  say   they're very close and has one  or the other  . Confusing  i know 

Thanks for your input

Victoria

  • Hi Victoria,

    Thank you for asking a question in our Help group’, my name is Rachel and I work as part of the Community team here at Macmillan. Firstly, I want to say how sorry I was to read about your partner’s diagnoses and everything else you are both going through at this time. It sounds like a lot to cope with and I am glad that you have found us here on the Community for some support. I hope you find the site to be a place of comfort and kindness.

    As your question is of a medical nature Victoria, I unfortunately won’t be able to respond myself today and I wonder whether you meant to direct your post to one of our discussion groups for some peer support? This Help Group is a space where you can ask the Community team for support with any technical issues or for more general help with using the Community.

    The Community is a place where members can interact with others who may be going through a similar situation for peer support. I can see from your profile that you have joined some of our discussion groups here on the site, and if you wanted to interact with other members, the best place to start would be to post in one of these groups. That way other members will be able to see your post and respond to offer support.

    To post in any of our discussion groups Victoria, click the + button when using a mobile or the + New button when using a laptop or tablet. For step by step guidance on joining a group and posting, please click here to read through the relevant section of our help pages.

    As well as speaking to other members on the site for peer support Victoria, here on the site we also run our ‘Ask an Expert’ sessions. Ask an Expert’ is a space where members of the Community can post questions to our teams of specialists who will then respond with information and support. As part of ‘Ask an Expert’ we have our ‘Ask a nurse’ session where you can post any clinical queries you may have and one of our Cancer Information nurses will aim to respond within two working days.

    If you feel you would like to speak to a nurse today Victoria, please do know that our Macmillan Support Line is open 7 days a week 8am-8pm. Our Cancer Information nurses are one of the teams that are here to support you at this time. That number is 0808 808 00 00, or if you would prefer, you can also live chat with a nurse during these hours via our webchat facility by clicking here and selecting the option ‘Questions for a nurse’.

    I hope the above information is useful Victoria but if you have any questions, or ever need any support, please don’t hesitate to get back in touch. To contact the Community team, you can either respond to this post, email us at community@macmillan.org.uk, or send a private message to our ‘Moderator – Macmillan’ account on the site.

    The Community team aims to support all our members as best we can, so if there is ever anything we can do to help – do let us know.

    Kindest regards,

    Rachel
    Macmillan’s Community team

  • Hi Victoria, my name is Kat and my husband is going through this same treatment and this same diagnosis. I can see your post from over 1 year ago and I am wondering, are you both ok? I am terrified seeing my husband going through such a difficult and painful experience and would like to help somehow. I would like to talk to you about all this. Hope you are still fighting x

  • Hi KatK,

    It’s Megan here from Macmillan’s Online Community team. I hope you don’t mind me replying to your post as I know you’re wanting to connect with . Hopefully they’ll see your post and reply soon.

    If you’d like to connect with members of the site privately, there’s the option for you to use private messages here on the Community. If you need some help using this part of the site, just let us know as we can help you. There’s also some guidance in our help pages.

    I’m so sorry to hear about your husband and what you are both going through just now. I’d like to share the following information to help you connect with other members of the Community and find the support you may be looking for.

    When being there to support a loved one it’s important that you have some support for yourself so I’m glad that you’ve found us here on the Online Community. It’s a place where you can access some support from people who can understand what you’re going through.

    Our Community groups are safe and supportive spaces to ask questions, chat to others and give support back. I had a look at your profile and noticed that you’d not yet joined any Community groups so you may find joining and posting in our Family and friends forum and our Carer’s only forum helpful. You’d be very welcome to join these groups and talk to others who are also supporting their loved ones.

    Once you’re a member by clicking the grey ‘Click to join’ banner at the bottom of the page, you can add a post by clicking the ‘+new’ or ‘+’ button near the group title. I’ll add an image below to help explain.

     Family and friends forum page with a red circle around the +new button.

    When you have shared what has brought you to the Community, I am sure members will be close by to offer some support. You may even wish to add some information to your profile, so you are not having to repeat your experience with each post you write on the site. By doing this it means that other members can read about your experience and how they may be able to help. There is some information in our Help pages to help you do this.

    Please remember that alongside accessing peer support here on the Online Community, the Macmillan Support Line teams are also here for you. Sometimes it can help to talk things through with someone who’s there to listen. They’re available 7 days a week, 8am-8pm on freephone 0808 808 00 00email or live webchat.

    When you contact the Support Line there will be options to speak to the Information Nurse Specialists, the Information and Support advisers, and the Money and Work teams. They can provide emotional support, practical information, and financial guidance alongside offering a listening ear.

    I hope the above makes sense and please do let us know if you have any questions, or need further help using the site. The Online Community team are here to help and you’re welcome to email community@macmillan.org.uk.

    Best wishes, 

    Megan
    Macmillan's Online Community team

  • Hello  kat . I wanted to rey to you  straight away .  

    So sorry  to hear your husband is having  this set back.  Its so difficult to be the one suffering and  the onlooker .

    Wayne my partner  after 15 months of 4 different types of  Chemo  rchop   then beam  ,then he had a trial immunotherapy , after these unfortunately failed , he was then offered  a bonemarrow transplant , he  managed to have a stranger donate  and this  would be his last chance .  He was veryy unwell , and with his very  condition it was such a hard one to treat . 

    Unfortunately Wayne died on 14th Dec  , it's was such a difficult cancer  and he fought all the way .

    Please don't  be disheartened  every person is so different  he  wS very unwell and his consultant fought for him all the way . 

    I didn't find much help on here  so we just muddled thru ,  

    Any questions please ask   altho I will understand  if  it's not   a good outcome  you .so have thought.  but please this isn't always  the case , Wayne wZ unlucky 

    Best wishes  vicky 

  • Dear Vicky, I am so sorry for your loss. I am terrified by this nasty disease. We are going through hell right now and it is not easy. My husband supposed to come back home yesterday after few months in the hospital but due to another nasty infection is still there. We are fighting, he is fighting but it is so awful to see how he is suffering. It does tear my heart apart. He is also partially paralysed. Can’t believe that few months back he was almost normal…I am deeply sorry for you and Wayne. How do you cope? How have you managed to go through all this difficult time? Sending you massive virtual hug. Best wishes - Kat

  • Hello kat 

    I really am sorry your husband is so unwell , amazingly Wayne was very brave  and accepted  everything  offered even if it made him extremely  unwell . Infection is of course    the worst to treat Wayne had rhem all , he spent long spells in hospital  , but his final week  I bought him home and muddled thru,  he slipped thru the net at  with maxmillian / palliative  Care , but we managed . It's been a very difficult 5  months  without him,  but I had him for 22 good years and that is my blessing and I get comfort from that .

    Just spend every day hoping  but it is not an easy road  and unfortunately   this kind of cancer is so rare,  I just wish we  had people to talk to that had it , but we never found anyone with the same . 

    Please keep me informed I know what  youre  going thru . It  is a hard road  , but   I found writing things down  comforting .  Wayne was a fit 46  year old  and then   this horrible disease.  But to always have hope and we never gave up on that . Kinds regards  vicky