T-Cell Lymphoblastic Lymphoma (T-LBL) / ALL

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Hi Everyone :)

I've been meaning to post for a while but I've been really apprehensive. I guess I'm looking for some positive stories to lift my spirits and keep me focused on getting better :)

I'm a 31 year old male and I was diagnosed with T-LBL on Christmas Eve with a large mass in my mediastinum and started chemotherapy on New Year's Day after steroid treatment from 23rd December. My condition is for all intents and purposes the same as ALL, however as the disease was not in my bone marrow, I have the lymphoma variant. I have been treated under the UK ALL Trial 14 protocol and am due to have an allogenic bone marrow transplant on 31st August. Most cases of ALL or LBL are B-Cell, whereas T-Cell variants are rarer (25%). This means certain treatment options such as CAR-T wouldn't be available to me should I need treatment again. I achieved a complete remission very early on back in January which I believe is a positive sign.

I had my consultation about the bone marrow transplant a couple of days ago with a fantastic consultant who is also very statistic based. I've said from the beginning to all of my consultants I'd prefer not to know general prognosis (and I won't list any of that here as I don't think it's particularly helpful) however my consultant did go through prognosis which hasn't helped me at all. It's scared me and I haven't slept properly since. I've been very strong throughout treatment, spending weeks and weeks in hospital without visitors, but now I'm scared for the future.

I'm most frightened about relapse. I've read one really positive success story on here so far with many years of remission, however it's not clear whether their ALL was T-Cell based. My consultant did mention living for 50+ years so 'cure' is possible, I just need to get into the mindset that a complete and permanent remission is possible.

I'm hoping to see my parents today and that should lift my spirits a bit. I've had fantastic support from hospital including a Macmillan Nurse and their Psychology Team.

Take care and all the best to you all, David 

  • Hi David

    Welcome to the ALL forum. Not the place you want to be I am sure but a good place for information and chatting to people who have been through the journey you are currently on.

    I was diagnosed with T Cell ALL 4:11 translocation (the tails of the 4 and 11 chromones broke off and switched) back in September 2012 aged 42 and treated on the UK ALL Trial 14 protocol as well. I then had a 9/10 mismatched allogenic SCT in May 2013. I was treated in Barts in London. Like you I just focussed on "it is curable" rather than the percentages! Dr Google was not used in our house.

    The chat about having a stem cell transplant is naturally daunting because they have to tell you all the possible scenarios.. If you read the leaflet in a packet of ibuprofen you wouldn't be too happy with all the possible side effects either!

    I am now over 8 years post transplant living a normal life, working, going out and travelling abroad etc for holidays, playing golf (still badly) . I was told when I hit the 5 year mark that I was effectively cured and there was no reason that the ALL would come back. I still have annual checks at Barts and my immune system has been slow to get going so I top it up at home with Immunoglobulins. Hopefully I can stop these soon but being in a global pandemic for the last 18 months the hospital has left me on them.. no surprises there!!

    You can read about my journey by clicking through to my profile HERE Feel free to ask any questions that you may have and hopefully I can answer them.

    I would also join the Stem cell transplants forum by clicking HERE You can start a new post by clicking the black  + New button on the right of the page. Lots of people who have been through them or are going through them now are in that forum.

    Hopefully seeing your parents will lift your spirits today... you can get through the treatment and enjoy a normal life afterwards. The treatment is hard but take it one day at a time and it is very doable!

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi Paul,

    Thank you very much for your reply, I've noticed you've commented on other posts and given so much information too. I think for you to have gone through this all those years ago with a family to think of too must have been so difficult. Well done on beating it - cancer clearly chose the wrong man. Thank you for being so open and offering hope and positivity I (as I'm sure many others) really appreciate it Smiley

    I'm not sure what chromosones have caused my T-Cells to start misbehaving, nor do I know whether I'm Philadelphia +/-. I find it so bizarre my T-Cells been fine up until last year. I assume that as I've not been told my Philadelphia status, I'm negative, however I'm not going to ask as I'd rather not know now! I'm under the care of St. George's and they've been fantastic. The Haematology consultants in St. George's are all very good, as I said one is very statistic focussed, whereas another said to not worry about the statistics as they're quite skewed based on a number of factors so I'll try and remember that advice whenever I start getting anxious! They're absolutely treating to cure me and even the consultant who mentioned statistics said he's playing for me to have at least another 50 years ahead of me so I need to remember all the positives during my down days.

    I've read a couple of your posts, and it seems that the 2 year mark is a big milestone (is this measured from when you were first diagnosed with T-ALL?) and then 5 years. I take it after 5 years things become a lot lighter in terms of monitoring, and they'll use the word 'cure' from what you've said above. 

    For my SCT, I have a 10/10 match with a female 7 years younger than me with a different blood type. They've run through the various drugs they need to put me on to make sure there isn't a reaction due to the mismatch of blood etc, however the consultant is very positive that engraftment will happen with a very low risk of rejection. Weirdly I'm not actually that worried about GvHD for the main reason that if this is happening, there will also be a GvDisease effect which is what I need. I need my faulty T-Cells to be given their marching orders from my donors cells so GvHD is my insurance policy. I wonder why, if the SCT is successful and my own T-Cells will no longer be produced, why there's any chance my T-LBL could come back. I don't really want to know the answer to that, just thinking out loud.

    I'll definitely join the SCT forum, however I don't have too many worries about that at the moment. It's more about the future, however need to learn to focus on what's immediately ahead of me first.

    One question I was going to ask was about the radiotherapy I've had to my chest, as the T-LBL grew on/in my mediastinum (chest wall) - I last had radiotherapy on 12th July, and am getting the odd pain here and there and discomfort. St. George's aren't worried, I had a PET scan in late June, and chest pain due to radiotherapy is apparently quite common, was just wondering if you experienced this and when the discomfort settled down? 

    Thank you again and it's great to hear you're enjoying life! I was worried I'd have to give up alcohol and treats for the rest of my life, however it sounds to me like you can still live a balanced lifestyle and be healthy! It's great you can take the Immunoglobulins from home, although I'm sure injecting all the time isn't that fun. I've heard we need special travel insurance to go on holiday, is this right?! Still a small price to pay in the grand scheme of things Slight smile

    Take care and keep safe, David

  • Hi David

    Strangely I didn't find the Macmillan forums until after I had my treatment and at the time I was desperate to try and talk to someone who had been through one. Luckily I just happened to sit next to a lady in one of the clinic waiting rooms who turned out to be 10 years post transplant. 

    The two year point and 5 year point were both for the date of the SCT.. I was diagnosed in Sept 12 but didn't get my SCT until the end of May 13 due to reacting to one of the chemo's and suffering with pancreatitis. Took a few months to recover enough to then go ahead.

    My donor was a different blood group which at the time I found strange but my blood group just changed to that of my donor so I went from A RHD Neg to O Neg.. The other strange thing will be when you have to book all of your childhood vaccinations again.. I had to go to the children's clinic at the GPs!

    GVHD can manifest itself in many ways. Mine was skin and gut.. The skin was managed with light therapy (basically a high power hospital tanning booth.. first session was 3 seconds!! I just make sure I get away each year somewhere sunny! I had GVHD of the gut.. not fun but once correctly diagnosed and what it was causing (in my case bile acid malabsorption) the meds sorted it out quite quickly.

    I didn't have any radiotherapy so I cant comment on it but I know some of the members in the SCT forum have so worth an ask there.

    Yes the immunoglobulins every couple of weeks are OK.. which reminds me I am overdue to a task for later.

    Travel insurance was quite expensive immediately after the SCT.  I did travel abroad about 2 1/2 months after the SCT to Greece. Not sure if many consultants would be that keen on you doing it but I just needed to get on with some normality. It was about £800 for an annual worldwide policy ex USA in the first year. Each year it came down and now I pay about £25 per year more than a normal policy with a slightly higher excess. 

    Like you I took one day at a time and just dealt with what was in front of me..

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi Paul,

    Thank you again for taking the time to reply, I really appreciate it!

    It's good you found the forums, I think this entire experience is something that lives with you for the rest of your life. It's important to make sense of it and find light at the end of the tunnel. It's great you met someone who was 10 year post transplant, that must have been a huge boost - and you're almost now in that position yourself!

    Judging by the timescales, it looks like we're both at the 8 month mark from diagnosis to having the SCT. I've also had a few infections along the way which has delayed treatment, including neutropenic sepsis and then an infection on my Hickman line which meant I had to have it removed a couple of weeks ago! Pancreatitis doesn't sound much fun, however glad it all got resolved so you could have your SCT!

    My blood will change from O+ to A+. Apparently my own blood cells will continue to be produced for up to 3 months and then the donor will completely take over. Apparently A+ blood types are more suited to vegetarian diets, I wonder if my cravings will change! I don't eat tons of meat these days anyway so I'm not fussed either way. I think the vaccinations are going to be weird, especially going to the children clinics! I can't wait to have my flu and covid 'booster' as the Consultant said - I thought my vaccines were completely wiped, however perhaps there's some residual protection from my donor. Flu/Covid should be within the first 3-4 months and I'm counting down the days!

    I'm expecting a bit of skin and gut to be honest, I hope I manage to have mainly acute GvHD symptoms but need to be prepared for all scenarios. The consultant is clear all of these things can be diagnosed, managed and treated quite quickly as you mention too which is positive!

    I have a friend who underwent radiotherapy to the chest, and she said discomfort is quite common which has reassured me. I'm sure it'll settle down and I always relay my symptoms to the team at St George's. 

    I'm absolutely gob smacked - and impressed - you went away 2.5 months after your SCT! That's mental! I completely get why you did it though, I bet you were desperate for a change of scenery and some R&R. If it wasn't for bloody Covid I could have seen myself doing the same! The consultant unfortunately has said that getting Covid immediately post transplant would not be good for me to put it lightly. Roll on my Covid vaccine!

    Anyway, thank you again and roll on Day 0 (31st August)

    David Slight smile

  • Hi David, hope you are well?

    My 7 year old son has been diagnosed with T cell Lymphoma Lymphoblastic this year in June 2022. I was wondering how you are doing now? And also wondered why you had to go for a Stem Cell Transplant? In our case, our consultant said only in a case of relapse they look at bone marrow or SCT.

    Thanks

  • Hi , so sorry to hear of your son’s diagnosis. I hope he is responding well to the treatment. Although I am no expert on these matters it is probably due to age as both David and I were a lot older than your son at diagnosis (31 and 42). 

    The risk of us relapsing would have been very much higher without the stem cell transplant. At the time when I was in remission that there was an 80% chance that within 2 years the ALL would come back if I didn’t have the SCT. So I decided that I would have one. 

    The relapse rate for children is much much lower so the need for an “upfront SCT” just isn’t there.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Thanks for your response Paul. My son is mixed race as I'm from India and my Mrs from Hungary so, just praying that he doesn't need a SCT as I've been told finding a SCT or Bone marrow transplant donor for mixed races may be difficult..I'm thinking of getting my younger son who is 17 months old checked to see if God forbid need arises can be a match. I was wondering if any of your meds were stopped due to Pancreatitis, my son has been in hospital since 30th Aug 2022 and just a couple of days ago, the consultant said he has Pancreatitis, I'm in hospital as I type this, haven't slept all night as was getting hot towels for him, on his belly.....the consultant said they cannot give asparagine chemo drug anymore as pancreatitis is a side effect of it and because of this the relapse percentage may go from 10% to 20% ....he got 3 doses, 3 more remaining. I shall be grateful if you can share your experience with Pancreatitis during chemo and if that led to any change in chemo medications? Many thanks 

  • I also reacted to the asparagine. My pancreatitis was a really bad acute reaction and I ended up nil by mouth for almost 3 weeks. At this stage I was in remission but it meant my stem cell transplant was delayed by four months so I could rebuild my strength. At that time I was just given two large doses. 

    During that time I was given oral chemo and that did the job and I stayed in remission until my stem cells at the end of May 2013.

    As you say hopefully your son won’t need a stem cell transplant and just keep taking one day at a time.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Thank you so much Paul. You don't know how much you have helped today. Feel a bit relieved. Thank you!