Bone marrow cancer

I have just been diagnosed with a malignant cancer in my bone marrow, official name is T Cell LGLL (Large Granular Lymphocytic Leukaemia). Apparently 30% of people who have this extremely rare cancer also have RA. I have had RA for about 25 years now, but the last couple of years I felt that something else was wrong. I had severe chronic neutropenia for over 2 years with neutrophils of 0.5 and not much higher. The beginning of this year they dropped to 0.1 and have stayed there all year. I had a bone marrow biopsy 18 months ago which showed abnormal T cell clusters. I have had neutropenic sepsis 3 times now, twice this year so they did another biopsy which showed the malignancy. The cancer is killing my neutrophils. I am still in shock I think but reading everything I can get my hands on about this. My haematologist does not have anyone else with this because it is so rare so there is no set medication so she is taking advice on what to put me on, there is no cure but it is very slow growing. My greatest danger at the moment is getting an infection and having sepsis again, which is life threatening. I wonder if anyone else has been diagnosed with this. On a lighter note, my daughter is going to give birth to my first grandchild, hopefully in the next few days, so I can't wait to meet this little baby girl who is going to be called Robyn. :)

19 Replies

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  • So sorry to hear your news. It must have been a terrible shock, and I am so impressed with the way you are dealing with it. I do hope that a good treatment can be found. My sister-in-law has had leukaemia for several years, but fortunately there is an effective treatment, which doesn't cure, but keeps it under control.

    I have two grandchildren, a girl aged nine, and a boy nearly seven. They are the light of my life! It's such a special relationship, I'm so glad that you have this to look forward to, at such a time you will need something to give you joy, and to live for.

    Do keep in touch. Thinking of you. Mavis x

  • Thank you Mavis, your kind words have touched me so much. Take care xx

  • Oh anneileen, I'm sorry I can't help with your question but am able to offer my hope that all who are helping you are doing everything within their power to help. The only thing that I can think of is to ask on the many cancer sites out there & you may find somebody who has LGLL but without having RD too. Worth a try if you haven't thought of it already.

    I hope someone replies who's of more help. You'll be doing your very best to avoid infection anyway but how wonderful for you to have a baby granddaughter to welcome, especially being your first. She will be a joy for you & your family I'm sure. Please let us know when she arrives & if you have any response to your reason for posting.

    Stay strong, you need to for yourself & the lots of love & hugs you'll be giving Robyn. x

  • Hi Nomoreheels, thank you for your lovely comments, I have found a group on Facebook that is especially for people with LGLL, mostly from other countries, only 1 or 2 from uk that I have found up to now but there is a wealth of information on there. Thankyou too for your best wishes for the baby, I will definitely let you know when she arrives. xx

  • Congratulations on being on the doorstep of grandparents, how lovely to be able to look forward to meeting a special baby girl when things are looking a bit bleak right now. But, it sounds as though you have had a long time to digest your illness situation, because you seem very calm.

    I lost my eldest daughter with Leukaemia 17 years ago, she also had a rare type which usually only affects males called acute monastic leukaemia. Of course treatments have improved so much over the years and I think she might have survived had she been diagnosed with it now. Anyway, it feels strange talking about it to you, but I hope the doctors come up with some suitable treatment which is not too uncomfortable for you. Take care and do keep us in touch with your progress. June xx

  • Thankyou June and I am sorry about your daughter, I know its 17 years but I don't think you ever get over losing a daughter like that. You must have gone through some tough times. I think they are going to start me on oral chemotherapy because normal chemo does not work on this type of cancer being the T cells.

    Anyway, I will do whatever they want me to. Take care and thank you for your concern. xx

  • PS that was supposed to be miloblastic leukaemia.

    Just a thought, I expect you have had advice about keeping infection free when it comes to food, but I'll just mention that food should be thoroughly cooked through to a certain high temperature, Steer clear of soft cheeses particularly French cheeses, eggs need to be well cooked so they are not soft. Pepper pots tend to hang on to bugs, so it's a good idea to use the little sachets like you get in some restaurants, so maybe you could start collecting a few, ha ha.

    I'm thinking that your immune system has been compromised for some time, so you are probably well versed in taking care food wise. How strange that this type of Leukaemia is associated with RA where the immune system is attacking the joints, what a complicated thing the immune system is.

    I hope all goes well for you. June x

  • Thankyou June, for the suggestions, I do try to take care with most things, never thought about the pepper pot! The immune system is indeed a complicated thing. Thanks again xx

  • So sorry to hear your news, it must have come as a huge shock. I really hope that the medical team looking after you are caring, but it sounds as if they're already making an effort to find the right treatment for you.

    Not the same thing at all I know, but my mother was diagnosed with breast cancer fairly late in life (in her 60's). She decided to have minimal intervention, so just took tamoxifen and refused any surgery. Well she eventually died of old age at 95. So they can be very slow, and I hope that it the case for you too.

    Good luck, and enjoy your new grandchild.

  • Thankyou for your kind, inspiring words. Your mother was wonderful, it just shows that sometimes just doing nothing is the best thing to do. xx

  • hi there so sorry to read about your condition, its so unfair to have more than one illness, i have a bone marrow condition myeloma (bone cancer) it is in its very early stages and had blood results yesterday saying its stable, not at the stage of requiring chemo so to a point I understand, I too have fm, ra and sphincter of oddi which is to do with liver and pancreas. This condition is worse than all the others put together presently. I spend up to 18 hours a day in bed because of nausea, pain and unable to digest food properly.

    How lovely you are getting a granddaughter, they bring unbelievable joy, along with keeping you poor, especially girls because you want to buy all the pretty things. I have 3 granddaughters and an 18month old grandson who lives in Australia and i need to get well enough to go overseas with them.

    wishing you well.

  • Thankyou so much for your reply. I really sympathise with you, you have more than enough to cope with and life can become such a trial. I pray that you become well enough to visit your family in Australia. Take care xx

  • When you look things up about this type of leukaemia, make sure you check the date of the information. A friend of mine looked things up about hers and got some out-of-date information which made her feel more depressed than she should have been - the more recent information was much more positive.

  • Yes, thanks I will check the dates, there is not a lot of info out there, this cancer was only discovered in the 1980's by a Dr Loughran from the states. He is still practicing, unless it is his son, I'm not sure but I have read a lot that he has written. x

  • thank you Anneileen, actually we are supposed to meet up with them and go to America and Europe as we live in NZ, our son has been planning it for about 2.5 years and I feel real bad that I may not be able to go. I need to decide soon as we are to leave on 18th October so need to pay very soon. I try to stay real positive and just enjoy what I can each day and rest when necessary, there are so many people sick and alot younger than me. Are you already on methotrexate or any chemo? enjoy your new granddaughter.x

  • Yes denvajade, I am on methotrexate, which is a chemotherapy drug, (I didn't know that until recently). Normal chemo won't work on the T Cells. However, I am not responding to the treatment so they have to think what else to try. I haven't worked since February this year and wonder if I will ever get back to work. I get so tired and I am so afraid of infection etc. I need to get back to work for financial reasons, still got mortgage to pay. My company has stopped paying my wages now so it is a struggle I don't need. I am 60 now and with the RA everything is a chore, which you probably know. Don't minimise your condition, of course there are people worse off and there always will be which is so sad, but your illness is your illness, and the way it affects you is a massive life changing thing. Have a good old moan, it really helps :) :) :)

  • Thank you Anneileen i am 2 years older than you and have been on methotrexate for 7.5 y but not on it for the last few months due to my digestive system. I too gave up work at 60 just could not do it anymore, like you I was so tired, in fact felt I could not do justice to it. Are you on a government sickness benefit to help? its not much though if its like NZ. I wish you well.Trish

  • HI everyone, just wanted to share the news, my little granddaughter, Robyn Marie, was born on 14.8.14 weighing 9.13. My daughter had to have an emergency c section and had a serious bleed after but all is under control now. Its been a terrifying few days but full of magic too. The baby is gorgeous, wish I knew how to post a picture. Thanks again everyone for your support. Im still not responding to treatment so the docs are trying to decide what to try next!! However, at the moment I am a delighted new grandma :)

  • Congratulations anneileen! Sorry to hear it was a hairy ride but so pleased she arrived safely.

    Hope they get you on the right track soon & find the right mix for you.

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