A change of speed?
I went back to hospital yesterday for the results of my PET/CT scan, bone marrow biopsy and MUGA scan, expecting them to be a simple ‘box ticking’ exercise to enable me to start chemotherapy this week. Well, that’s what I’d been told to expect. I’d cleared my desk at work and handed over everything that I was working on to colleagues, had received confirmation of the postponement of my MSc for a year and talked to the family about what the next few months were likely to bring. Everything in my life was as neat and tidy as it ever gets!
However, the results of my tests seem to have created some questions about how best to proceed. Part of the bone marrow biopsy wasn’t back, but the part that was suggests that my bone marrow is clear. The PET/CT scan shows tumours in and around my neck and shoulders, as well as in the groin, but no sign of anything in the upper or lower chest. My MUGA scan (heart function) and bloods are normal. I’m also not displaying any of the ‘B’ symptoms, apart from a little fatigue at times. But as I’ve also had my mother’s funeral to cope with in the last few days I suppose some tiredness ought to be expected.
So my treatment plan is now being reviewed and I have to go back next week for more discussions. It seems that waiting until the MCL develops further before being put through chemotherapy is an option, as the evidence seems to show that there is little difference in outcome regardless of the stage the lymphoma is at. This is very different to other cancers of course – where early detection and treatment is vital.
The chemotherapy regime for MCL looks brutal to my untrained eyes. The hospital believes that as I’m fit and (relatively) young, the Nordic Protocol, followed by a stem cell transplant will give me the best chance of long-term remission. The follow-up evidence from the clinical trial in Scandinavia pioneering this treatment, published in 2012, seems encouraging.
A change of speed, a pause, could be worth taking. Because of the toxicity of the treatment, the potential side effects and the length of time it takes, I can only have the treatment once and it is impossible to back out of once started.
I’d mentally prepared myself to starting chemotherapy sooner rather than later and felt pretty confused while all of this was being explained to me yesterday. However, on reflection, if I can grab a few more weeks or months of feeling well before starting out on this path, then it seems obvious that I should take it. But, of course, it may all change again next week once the hospital have had a chance to discuss my case again in the light of the missing part of the bone marrow test result.
Tim, my prayers are with you. I really hope that you get better and that the treatment is a success. I wish I was closer to give you support, but, I will just have to talk to you here, and support from afar. Good luck with the treatment. If you cannot update us for a while, we will understand. You need your strength for the gruelling treatment ahead.
Love to you and your family.
Elizabeth.
You have been a godsend to me during my studies and I am so sorry that you are going through this difficult and scary time. The fact you are fit and seem a positively minded man is going to be of huge benefit to you to help you along this journey and you have my very best wishes. the important thing to remember is not to be afraid to lean on people when you need to, its not only good for you but for them too. Carmen x
From what you describe, this sounds a bit like the therapy that my dad received years ago (he died in 2007, unfortunately from cancer, but a different form that you have). His therapy was termed ‘high-dose chemotherapy with autologous stem cell therapy’. It wasn’t exactly an easy treatment, so I feel for you. And yes, enjoying every moment you have before this begins is probably the best you can do. I wish you all the best.
Hi Tim just to say thinking of you during what must be a scary and difficult time, love to all the family too x
All the best with your treatment Tim. Thinking of you and praying for you.
Praying for you and your family Tim
I was told to use your site by a fellow student. It’s great. Thank you so much for your efforts and really sorry to read about your health issues. Keep strong. Enjoy every day. Thank you.
Hello Tim firstly many many thanks for posting these notes and advice it really is helpful to people (like me) who can’t get to tutorials for one reason or another . Also I’m sorry to hear you’re going through the possess of starting chemotherapy . I’ve been through it my self and yes it’s hard going but it’s necessary . I went through it for 6 months then radio therapy ( daily) for 6 weeks. That was 8 years ago now and I’ve never looked back. I’ll warn you life takes on new meaning after such an illness, you’ll have more energy and more enthusiasm than you know what to do with. 🙂 . Just a little tip some people would practically gallop across the street to tell me about a friend or relative that had died due to Cancer etc: Give them a wide birth or keep off the subject completely it’s draining ! I surrounded my self with as many positive people as possible , I only read upbeat books watched happy funny films etc. It just provided me with an escape and I found myself laughing all the time as well as feeling pants of course. So creating a positive environment provided me with much needed balance. Kind thoughts Tim to you and your family . Jenine x
Ps Ginger tea is good for sickness it worked better than medication for me ,just passing that on.
Tim, I have used your notes for every exam and without them I would have been sincerely lost they are fantastic, just at end of dd303 and thanking my lucky STARS i can print out your notes to help me. I thank you for your hard work, and am shocked and sorry to hear that you are ill. I hope that this time passes and before you know it you are back on track. You are clearly an intelligent man with a lot going for you. I am sure that on the other side you will use this experience for good even though it is weighing you down at present. You can do this! Praying for you.
Tim, I’ve also extensively used your notes, I think, on all the four courses, and would like to thank you for them. They have been helping me immensely during my studies, and I’ve used them more than my own! Sending you strength, courage and all the best of luck! Anja x