1. Hi all, my husband has been receiving chemo for 6 months but it’s failed. He is going to have CAR T therapy and I’m so scared. Has anyone got any experience with this treatment please. 
  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that the chemotherapy your husband has had has not worked but it's good that his team have another treatment up their sleeve.

    The online community is divided into different support forums where you can connect directly with others who have had CAR T therapy to find out their experiences. As I don't know what type of cancer CAR T therapy is used for I can't give  you a direct link to the appropriate forum.

    You could either reply to me telling me which type of cancer your husband has, and I can then give you a link, or you can look through this list and choose the appropriate forum to join.

    Once you've joined a forum, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could put something about your husband's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi I’ve just been diagnosed for a third time with ALL and I’m also due to start CAR-T. 
    have been told to come in on7th December for apherisis and then 4-6 weeks it will take for the cells to be genetically modified so by my estimates perhaps I’ll get my infusion for mid Jan

  • Hi  and  I am Mike and I help out around our blood cancer group. I don’t have ALL or DLBCL but you may want to join and post in our dedicated ALL or DLBCL support groups.

    These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group click on this link> Acute lymphoblastic leukaemia or Diffuse large B-cell lymphoma then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

    When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

    I am not sure if any ALL group member has had CAR-T but let’s see…. but there have been a few in the DLBCL group.

    You can also put CAR-T into the search tool Mag near the top and see the older posts and as always you can hit reply to any post and see if the group member is still using the site.

    I have had 2 Stem Cell Transplants so understand the journey well as SCT is not far removed from CAR-T……. we have had a few folks post in our dedicated Stem Cell Transplant support group who have had CAR-T

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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