Hi Penny, good to hear from you again. Please do let us know how your histology results go and look after yourself after your tonsillectomy. We are all here to support each other.
Dear penny, sorry to hear you relapsed but it was good to hear you got 4 years of remission. I have also relapsed from ppcl myeloma but it was only weeks after finishing treatment. The doctors are trying to figure out the best treatment regime for me, so it’s nervy time. I hope your biopsy results come back negative and it’s not causing you too much stress.
Best wishes alfie
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Here we go again! Removing the tonsil has not helped as it is now showing an aggressive DLBCL so now got to have salvage chemo and then make decision with team moving forward. So far I’m told the options look like radiotherapy, bone marrow transplant or Car T therapy. I’m awaiting appointment at Royal Marsden to discuss which of these are suitable for me.
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Hi Penny, I just thought I would share what has helped me with medical appointments when I feel so scared, out of control and non medically trained. I do write a list of questions I would like answers to and this site has empowered me not to feel so in awe of medical professionals and to understand so many of us find we walk through the door and our minds go blank. This site has also helped me to also ask for clarification or to ask all my follow up questions. If it is helpful I take someone with me to write down answers and ensure I do ask all my questions. The one thing that has taken such a weight off my shoulders is to realise that it is OK to take time to think about the options available to me and get back to them, as long as I do do so when and how we agreed. Take care and let us know how the appointment goes,
I do not want to criticise the NHS staff who are doing their best in difficult circumstances, but it is time patients and their political representatives started to aim higher if only for their children and grandchildren. That means, aim, at a system that does not have so many long waits between the various stages of assessment and treatment, (even when special factors like the pensions mess have NOT been reducing the hours of overtime worked). I sympathise with you but similar problems face many people with all kinds of condition. Geoff
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Hi Penny, I just wanted to send a message to say I hope you’re doing okay and that you’ve been supported in making a decision around treatment? We’re here if you have any questions or would like to talk anything through. Wishing you all the best, and thinking of you. Dawn
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Thanks for the mail have decided to have stem cell transplant and have been so busy with the huge number of appointments and tests in preparation. Finally have a date for 6 December with fingers crossed I’ll be home for Xmas.
Can’t pretend I’m not scared but I am optimistic that this will lead to a long remission. Can’t wait to book a holiday in the new year lol.
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Hi Penny, gosh I bet you have been busy, it feels to me like you are suddenly on an escalator towards the 6th December. So much to plan for. I bet you are feeling scared, it sounds natural to me. Please keep us posted we are here to support you.