So my daughter is 35, she had a live kidney transplant in 2016, she has seceres additional needs, 8 weeks ago she started having bad stomach upsets requiring hospital stays, 5 weeks ago we were told she had PTLD, a lymphoma cancer relatioing to her anti rejection medication. Fast forward , after numerous scans tests she has growths in her overys, stomach and bowel. Our renal specialist is convinced it's no longer PTLD and is very negative about her future. We meet with the oncology team at the hospital tommorow altho we are unsure if biopsy results have been received by them as they have not been received by Renal . Please advise what questions we should be asking, due to her additional needs I stay with her 24/7
Hi hollipops and a very warm welcome to the Community but sorry to hear about your daughters PTLD diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot.
I have lived with and been treated for a completely different type of Lymphoma for over 25 years.
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Non Hodgkins Lymphoma support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link below
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community…… I will keep an eye open for you in the NHL group.
