I would like to start by saying that everyone has been amazing and I am genuinely bowled over by the responses to my blog. I have had so many nice posts and couldn’t reply to everyone even if I wanted to. Thank you.
I have also had one person who was going through something similar say the blog has helped them. To me that’s a real win. I’ve also had people as far away as Ghana and Cuba reading it (too many travelling friends). Feel free to put it out to anyone you think might be interested.
I went to see the Professor again on Wednesday July 10th at 9am. Just to mix things up a bit I got a white americano before I went in instead of a chai latte. You don’t want to get typecast. He was running about 15 minutes late but at 9am in the morning the appointment room is a lot quieter, which was relaxing.
He ushered us into the consultation room once more and then we had a chat for about an hour, with a lot more information for us on the diagnosis. We discussed treatment options, prognosis and whether I should continue running. I think I might summarise briefly and then go into the interesting bits.
He showed me the CT pictures of my body. Fascinating! They carved up the pictures into segments and you could see all of my organs. The really good news is that other than my blood, bone marrow and spleen, the lymphoma hadn’t spread to any other organs yet, a bit of a win. It was also funny because for the first ten pictures there was a black circular hole leading up from my buttocks. I thought it was… you know the centre of the bottom… but it turned out it was my spine. That could have been an embarrassing if I hadn’t worked out what it was before asking…
One thing he did say was that my lungs are really big, possibly from all my endurance running. This is why I noticed my spleen was hurting when really it shouldn’t be discernible yet, as my lungs push into it more. He said it may have been another 5 years until I was diagnosed if it hadn’t been for that and the tiredness. I was in two minds about this. Which is better, to know sooner or , on the other hand, have 5 more years of ignorance? Still you can’t put the genie back in the bottle.
I may have had he condition for years already and not known about it. If so, and if it progresses in an orderly fashion there is no benefit to getting chemotherapy at this stage as prognosis is the same whenever you treat it.
The really good news it the median watch and wait time before chemotherapy for this condition is 7-10 years. That said some people need treatment after a year, but equally others can wait as long as 15 years (where do I sign?). You can see exactly what I mean from this short piece by Stephen Jay Gould which I found helpful (thanks Aaron). http://cancerguide.org/median_not_msg.html
Chemotherapy can then put the lymphoma into remission (80-90% or so of the time) for 5-10 years. Unfortunately then it can come back and be immune to chemotherapy so there is a real benefit in waiting and seeing because then you start the process that bit later.
Finally there is always the option of bone marrow transplants (I’m blood type A negative if anyone is game) but that’s much further down the line.
So taking chemotherapy off the table I have two options. Watch and wait or have a splenectomy (taking out my spleen.) I suspect many of you don’t know what a spleen does (I certainly didn’t), so…
‘it acts primarily as a blood filter—so it is possible to remove the spleen without jeopardizing life. The spleen plays important roles in regard to red blood cells and the immune system. It removes old red blood cells and holds a reserve of blood in case of hemorrhagic shock and also recycles iron. It also protects against certain infections.’
There are three benefits to removing my spleen.
1) It may slow the disease (there is no hard evidence on this but it is possible that this could slow growth).
2) It would stop my spleen hurting. As it grows it will hurt more and more so at some point this is likely to happen.
3) They could then tell exactly what the condition is by cutting up the spleen (at the moment they are 98% sure it is Splenic Lymphoma, but it could be another lymphoma, although treatment would be the same).
On the other hand there are three downsides.
1) Any operation has an inherent risk.
2) I would have to take antibiotics every day for the rest of my life. (note to self, check if allergic to antibiotics…)
3) I would be more prone to major infections like salmonella and Pneumonia
So, as you can see it’s a bit of a tough decision. The Professor suggested we watch and wait but also pointed out that a splenectomy was a real option but that it was entirely my decision. So I am going to have a think about it over the next three months until my next appointment and make the call.
It’s weird being asked to make decisions like this as
So anyway, that’s what we left it as. It’s up to me. I have to decide if I want my spleen (which I have taken to affectionately calling the blob) ‘to stay or to go’. I’ll keep you posted on how I get on with the decision, who knows, maybe we can have a poll on what people think….
Ellen Rayner said:
Hey marcus, ive been wanting to message you since reading your news, but honestly i didnt and still dont know what to say. Your Blog is so interesting to read and as for someone who doesnt read much im really enjoying how you write (if that makes sense) any way, i keep thinking about you and i really hope everything works out for you as best as possible.
Lots of love to you cuz 🙂 and lots of love to all the family x x x
Thankyou very much for the message. I completely understand, it is very tough to know what to say, I’ve found the same from the other side. Still I’m positive, feeling well and am genuinely happy so it can’t be too bad! Glad you like the blog, trying to be honest but also younger in cheek at the same time. It’s nice to hear from you though, hope all is well!are you still in Aus?
Lots of love to you too, keep having fun! Xxx
It is interesting to find out more about the disease as you find out more. Really enjoying the blog!
Also I am A negative and game if you ever need!
Thank you for sharing your story. I received the same diagnosis today. I found this article and wanted to make sure you saw it as you made your decision.
I’m 41 and dealing with the same choices you are. I wish you all the best. I’ll continue to follow your blog.
Sam Eggleton said:
I called my spleen Gerald the bastard. Sad really because in a weird kind of way whilst he was trying to grow so large and kill me he was also working hard to filter the crap in my blood. But he did cause problems. Let me tell you you DO NOT want splenic infarction I cannot tell you how painful this is. But OxyContin is a fab drug that makes you forget your spleen is essentially having a heart attack and growing. Despite all that its a pain having no spleen yes. I am cautious around sick people but I don’t carry hand sanitizer I hate the guy who sneezed in my face a couple of weeks ago putting me on strong antibiotics last week making me feel more crappy. Such is life. People are dirty lol. I expose myself to stuff to try and initiate some kind of immunity fight its harder now I have auto immune haemolytic anaemia as my antibodies do like to eat my immature blood cells. Little rascals. But life has to be lived, you have to drink great wine, eat fab food, laugh all the time and tell those who already know and those who don’t hope much you love and care for them often. Life is short as we know and we have to grab it with both hands and say this evil that lurks in the dark corners of our bodies will not win, that we will fight it with all we have until that miracle happens and the cure is found. Be damned 15 years. I’m gonna live forever
Sam – I would like to chat with you. My doctor wants to take out my bad boy spleen. I too have hemolytic anemia – have had it all my life with little problem. Not thrilled about the infinite antibiotics. Diagnosed with SMZL 10-13-15. Spleen not huge and I am asymptomatic. Rituxan infusions did not work.
Cyndi, I decided against having my spleen taken out, earlier in my blog. It was tough decision, but as I was asymptomatic they told me it was my decision. There are lots of pros and cons to it, but as there was no definite gain in my case I’ve kept it in. Two years later and I feel I made the right call, as I can always have it out later. I still have no symptoms, but don’t have Anaemia. It’s ultimately up to you, but my London doctors said thoughts had changed since they used to whip out the spleen as standard. They may have a reason to suggest it though, so work out why. If it’s because the spleen is impacting on other organs then maybe it is worth doing.
https://spleniclymphoma.com/2013/07/15/my-spleen-it-hates-me/ this is the one, sorry.
Sam & Marcus – sorry, I may be posting this in the wrong link on the wrong page; not generally a blog-user. 😦
Thanks for all this. I have read many of the articles and I think I am in that smaller group (of an already small group of SMZL patients) who don’t respond to Rituximab. Many thanks again! My doctor has used splenic irradiation with another SMZL patient who was reluctant to have spleen out. Patient, after a few irradiation treatments, begged to have splenectomy – LOL! Will ask my doctor how that guy is doing.
The article you sent me raises a lot of issues to discuss with my oncologist this coming Monday. I am not ready to sign up yet for the ‘spleen-free club’ and will post again after I visit oncologist in a few days.
Cathy Whitby said:
So interesting to read. Seems this is a fairly rare cancer and not easy to find other people with it. I had my spleen removed in September. It was a monster and I was strongly advised to have it removed as it had grown so big I cudnt eat as there was no room for food! I actually had two spleens which were both removed. The operation went well but I did have complications later. Blood clot from the portal vein and a collapsed lung. Pretty grim time but I feel so much better now. On penicillin for life and warfarin. Consultant has advised 95% of sufferers need no more treatment. It’s a wait and see time
Tammy Slaughter said:
Greetings from Texas! I’ve been reading your blog and have gained so much helpful information. I was diagnosed with SMZL last May also stage 4 with splenomegaly and trying to decide on a splenectomy I have spent hours reading your blog and can’t get enough of it and really appreciate your willingness to have a blog so that others can see how someone else is dealing with this not so common form of cancer. I realize this blog is 7 yrs old and I truly hope you are doing well now! Thank you for sharing your experiences!