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Lymphoma

My best mate was diagnosed with lymphoma about 5 years ago. She had treatment and then it returned 2 years ago. Chemo and radiotherapy seemed to clear it up but sadly it’s back again (this time in the chest wall). It’s an aggressive type and she’s just had 5 days of intensive chemo in hospital. She’s then got 17 days ‘recovery’ followed by the same cycle another 2 times. There is talk of stem cell therapy after that. Has anyone any experience of having this / knowing someone having this therapy? I believe it would involve a longer stay in hospital. 
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  • Although not necessarily the same treatment as with leukaemia there will I'm sure be similarities.
    The rounds of intensive chemo will perhaps be followed by whole body radiotherapy - this is to ensure that any remaining cancerous cells are removed. Then the stem cell therapy can commence. 
    Likely to be a delayed reaction in the effects of the chemo (and in particular radiotherapy if given) that will continue after the stem cell treatment before starting to improve. 
    One of the main effects is that the immune system is basically knocked out cold and the threat of infection is raised as a result. But the medics know that and can react very quickly should an infection be contracted.

    Having said the above, it may not be the same treatment regime for your friend. 

    Very best wishes to her and tell her that the experts know what they are doing and that there is great hope.  
  • I had lymphoma diagnosed 10 years ago and after rounds of chemotherapy and radiotherapy I was ok for a couple of years. It then returned and after more chemo and radiotherapy would not cure it i underwent a stem cell transplant. I had to spend a month in an isolation ward at Kings College Hospital. I was finally given the all clear about 3 years ago.
    Comfortable away win for @happyvalley (I'm sure not so comfortable, really) - great to hear you're all clear.
  • Stem cell therapy is an area of scientific research and clinical effort that I've had to be aware of for work. My company works in conjunction with the European Society for Blood and Marrow Transplantation (EBMT) every year, so I've had to delve into this. I also happen to have donated my peripheral blood stem cells (PBSC, also called pluripotent stem cells, because they can develop into different types of blood cell) a few years ago to someone who needed them.

    With that said, please don't take anything I'm saying as gospel, as I am of course not a doctor, nor have I been on the receiving end of treatment.

    Stem cell therapy for your friend is very likely to be autologous (use of own stem cells) because this lowers the risk of complications, and you wouldn't need a donor, no matter whether it's Hodgkin or non-Hodgkin lymphoma. A stay while the transplant takes effect would be a few weeks - anywhere between 4 and 8 is pretty usual, unless my memory serves me wrong, though longer isn't uncommon.

    The best place for any further information on the process and recovery is the Anthony Nolan website: https://www.anthonynolan.org/patients-and-families/having-stem-cell-transplant 

    All the best to your friend, of course. I am not clued up on "success rates" or anything for stem cell transplantation, but it's not an overly gruelling process to go through from what I know. I'm sure @happyvalley is far more enlightened than I am in this regard though.
  • PaddyP17 said:
    Stem cell therapy is an area of scientific research and clinical effort that I've had to be aware of for work. My company works in conjunction with the European Society for Blood and Marrow Transplantation (EBMT) every year, so I've had to delve into this. I also happen to have donated my peripheral blood stem cells (PBSC, also called pluripotent stem cells, because they can develop into different types of blood cell) a few years ago to someone who needed them.

    With that said, please don't take anything I'm saying as gospel, as I am of course not a doctor, nor have I been on the receiving end of treatment.

    Stem cell therapy for your friend is very likely to be autologous (use of own stem cells) because this lowers the risk of complications, and you wouldn't need a donor, no matter whether it's Hodgkin or non-Hodgkin lymphoma. A stay while the transplant takes effect would be a few weeks - anywhere between 4 and 8 is pretty usual, unless my memory serves me wrong, though longer isn't uncommon.

    The best place for any further information on the process and recovery is the Anthony Nolan website: https://www.anthonynolan.org/patients-and-families/having-stem-cell-transplant 

    All the best to your friend, of course. I am not clued up on "success rates" or anything for stem cell transplantation, but it's not an overly gruelling process to go through from what I know. I'm sure @happyvalley is far more enlightened than I am in this regard though.
    Thank you @PaddyP17

    i do hope it’s not a dreadful process to go though as she’s having a very tough time with the intensive chemo. She’s very weak and could only nod on Monday. She was able to speak a little on Tuesday and has gone home for the ‘recovery ‘ period now she’s had the chest drain removed. Apparently she will feel pretty bad next week on ‘day 10’ as that’s when the chemo takes big effect. @happyvalley is this what you found during your intensive chemo?

    By the way, thank you to everyone who’s replying. 
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  • Chemo is much worse from what I know, especially as it's basically an indiscriminate attack on all cells, but most potent on cancer cells. Stem cell therapy isn't nearly as "harsh".
  • PaddyP17 said:
    Stem cell therapy is an area of scientific research and clinical effort that I've had to be aware of for work. My company works in conjunction with the European Society for Blood and Marrow Transplantation (EBMT) every year, so I've had to delve into this. I also happen to have donated my peripheral blood stem cells (PBSC, also called pluripotent stem cells, because they can develop into different types of blood cell) a few years ago to someone who needed them.

    With that said, please don't take anything I'm saying as gospel, as I am of course not a doctor, nor have I been on the receiving end of treatment.

    Stem cell therapy for your friend is very likely to be autologous (use of own stem cells) because this lowers the risk of complications, and you wouldn't need a donor, no matter whether it's Hodgkin or non-Hodgkin lymphoma. A stay while the transplant takes effect would be a few weeks - anywhere between 4 and 8 is pretty usual, unless my memory serves me wrong, though longer isn't uncommon.

    The best place for any further information on the process and recovery is the Anthony Nolan website: https://www.anthonynolan.org/patients-and-families/having-stem-cell-transplant 

    All the best to your friend, of course. I am not clued up on "success rates" or anything for stem cell transplantation, but it's not an overly gruelling process to go through from what I know. I'm sure @happyvalley is far more enlightened than I am in this regard though.
    Thank you @PaddyP17

    i do hope it’s not a dreadful process to go though as she’s having a very tough time with the intensive chemo. She’s very weak and could only nod on Monday. She was able to speak a little on Tuesday and has gone home for the ‘recovery ‘ period now she’s had the chest drain removed. Apparently she will feel pretty bad next week on ‘day 10’ as that’s when the chemo takes big effect. @happyvalley is this what you found during your intensive chemo?

    By the way, thank you to everyone who’s replying.Arsenetatters said:
    PaddyP17 said:
    Stem cell therapy is an area of scientific research and clinical effort that I've had to be aware of for work. My company works in conjunction with the European Society for Blood and Marrow Transplantation (EBMT) every year, so I've had to delve into this. I also happen to have donated my peripheral blood stem cells (PBSC, also called pluripotent stem cells, because they can develop into different types of blood cell) a few years ago to someone who needed them.

    With that said, please don't take anything I'm saying as gospel, as I am of course not a doctor, nor have I been on the receiving end of treatment.

    Stem cell therapy for your friend is very likely to be autologous (use of own stem cells) because this lowers the risk of complications, and you wouldn't need a donor, no matter whether it's Hodgkin or non-Hodgkin lymphoma. A stay while the transplant takes effect would be a few weeks - anywhere between 4 and 8 is pretty usual, unless my memory serves me wrong, though longer isn't uncommon.

    The best place for any further information on the process and recovery is the Anthony Nolan website: https://www.anthonynolan.org/patients-and-families/having-stem-cell-transplant 

    All the best to your friend, of course. I am not clued up on "success rates" or anything for stem cell transplantation, but it's not an overly gruelling process to go through from what I know. I'm sure @happyvalley is far more enlightened than I am in this regard though.
    Thank you @PaddyP17

    i do hope it’s not a dreadful process to go though as she’s having a very tough time with the intensive chemo. She’s very weak and could only nod on Monday. She was able to speak a little on Tuesday and has gone home for the ‘recovery ‘ period now she’s had the chest drain removed. Apparently she will feel pretty bad next week on ‘day 10’ as that’s when the chemo takes big effect. @happyvalley is this what you found during your intensive chemo?

    By the way, thank you to everyone who’s replying. 
    I'm sure your friend will be fine. During and after stem cell treatment I felt extremely tired all the time, although not ill. It was not so bad as the feeling after the chemo though.
  • I was given chemo and radiotherapy for Leukemia 12 years ago. 

    The chemo attacks and destroys cancerous (and non-cancerous) blood cells. Once everything is clear, you are injected with stem cells which produce new blood cells. Without the stem cells you would die before you could replace the blood cells you have lost.

    In my case, the stem cells came from a donor because this works better for Leukemia but for Lymphoma I think you get stem cells taken from you and stored before the chemo.

    The chemo treatment makes you feel sick and there is no way you can continue with anything remotely normal while it's happening. It's like a really bad hangover lasting a month!

    In my case, I was in an isolation ward and all I could do was lie in bed and let the saints at the Marsden look after me. In some ways being isolated helped because I couldn't really do anything but listen to the radio anyway!

    But to put it into context, soon after my treatment, I contracted chicken pox and spent three months in bed at home. Physically, this was a much worse experience. Like having 'flu for three months.  I just wanted to die.

    Still here moaning abut Roland though!
    Thank you @stevexreeve
    so glad it worked well for you. This is making me feel more positive 
  • I was given chemo and radiotherapy for Leukemia 12 years ago. 

    The chemo attacks and destroys cancerous (and non-cancerous) blood cells. Once everything is clear, you are injected with stem cells which produce new blood cells. Without the stem cells you would die before you could replace the blood cells you have lost.

    In my case, the stem cells came from a donor because this works better for Leukemia but for Lymphoma I think you get stem cells taken from you and stored before the chemo.

    The chemo treatment makes you feel sick and there is no way you can continue with anything remotely normal while it's happening. It's like a really bad hangover lasting a month!

    In my case, I was in an isolation ward and all I could do was lie in bed and let the saints at the Marsden look after me. In some ways being isolated helped because I couldn't really do anything but listen to the radio anyway!

    But to put it into context, soon after my treatment, I contracted chicken pox and spent three months in bed at home. Physically, this was a much worse experience. Like having 'flu for three months.  I just wanted to die.

    Still here moaning abut Roland though!
    Thank you @stevexreeve
    so glad it worked well for you. This is making me feel more positive 
    You are a brilliant friend, A & I know your pal will be SO glad she has your support. 

    Don't forget to look after YOU as well.
    x
  • I was given chemo and radiotherapy for Leukemia 12 years ago. 

    The chemo attacks and destroys cancerous (and non-cancerous) blood cells. Once everything is clear, you are injected with stem cells which produce new blood cells. Without the stem cells you would die before you could replace the blood cells you have lost.

    In my case, the stem cells came from a donor because this works better for Leukemia but for Lymphoma I think you get stem cells taken from you and stored before the chemo.

    The chemo treatment makes you feel sick and there is no way you can continue with anything remotely normal while it's happening. It's like a really bad hangover lasting a month!

    In my case, I was in an isolation ward and all I could do was lie in bed and let the saints at the Marsden look after me. In some ways being isolated helped because I couldn't really do anything but listen to the radio anyway!

    But to put it into context, soon after my treatment, I contracted chicken pox and spent three months in bed at home. Physically, this was a much worse experience. Like having 'flu for three months.  I just wanted to die.

    Still here moaning abut Roland though!
    Thank you @stevexreeve
    so glad it worked well for you. This is making me feel more positive 
    You are a brilliant friend, A & I know your pal will be SO glad she has your support. 

    Don't forget to look after YOU as well.
    x
    Agree with this 100%, she is lucky to have you as a friend.
  • I was given chemo and radiotherapy for Leukemia 12 years ago. 

    The chemo attacks and destroys cancerous (and non-cancerous) blood cells. Once everything is clear, you are injected with stem cells which produce new blood cells. Without the stem cells you would die before you could replace the blood cells you have lost.

    In my case, the stem cells came from a donor because this works better for Leukemia but for Lymphoma I think you get stem cells taken from you and stored before the chemo.

    The chemo treatment makes you feel sick and there is no way you can continue with anything remotely normal while it's happening. It's like a really bad hangover lasting a month!

    In my case, I was in an isolation ward and all I could do was lie in bed and let the saints at the Marsden look after me. In some ways being isolated helped because I couldn't really do anything but listen to the radio anyway!

    But to put it into context, soon after my treatment, I contracted chicken pox and spent three months in bed at home. Physically, this was a much worse experience. Like having 'flu for three months.  I just wanted to die.

    Still here moaning abut Roland though!
    Thank you @stevexreeve
    so glad it worked well for you. This is making me feel more positive 
    You are a brilliant friend, A & I know your pal will be SO glad she has your support. 

    Don't forget to look after YOU as well.
    x
    Agree with this 100%, she is lucky to have you as a friend.
    That’s very kind of you @HantsAddick and @Fanny Fanackapan. The truth is she’s been my little rock over the last 20 years. I’m so used to her being the strong lady that she is. It’s so sad seeing her so ill. Earlier this week when they were about to take her chest drain out she got upset and said she was scared. Her ‘kids’ (32, 30 and 27!) were saying they’d not seen her so vulnerable and it shocked them too. 
  • I was diagnosed with leukaemia in October 2018 and although similar to lymphoma the two blood cancers are not identical.  The consultant told me “give me a year of your life and I will cure you”.  Since then I have had five courses of chemotherapy to clear the leukaemia followed by a stem cell transplant in May. The chemotherapy was very difficult to cope with, sickness, loss of appetite, resulting in the loss of 2 stone in weight. I am now in remission but I know that I am not cured . Following the stem cell transplant the immune system is non existent and I caught a glandular fever virus which  set my recovery back some time.  All I can say to Arsenetatters that your friend will go through a very difficult time.  Coping with the chemo will be very difficult but she has to stay positive as the right mental approach is absolutely essential. 
    Thank you @callowendaddick
    5 courses of chemo must have been awful. I’m glad you are in remission now - and long may it last. It sounds like my friend is going to be in for a very difficult time over the next few months.
  • Difficult times at the moment. My friend had her 5 days of intensive chemotherapy and then developed an infection, followed by another one. Her immune system is almost zero. She’s been moved to a room where you have to wear gowns and masks when you enter. Today she has a cough which may be yet a further infection and is now back on oxygen. 

    When my Dad had pneumonia he was put on oxygen but they then took him to intensive care ‘to help with his breathing’. He did go back to a normal ward after a week but then got another infection and died. He was 87 so not the same situation at all as my friend. I am imagining that things could go the same way for her too - or am I being too negative? Does this happen with intensive chemotherapy?
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  • Difficult times at the moment. My friend had her 5 days of intensive chemotherapy and then developed an infection, followed by another one. Her immune system is almost zero. She’s been moved to a room where you have to wear gowns and masks when you enter. Today she has a cough which may be yet a further infection and is now back on oxygen. 

    When my Dad had pneumonia he was put on oxygen but they then took him to intensive care ‘to help with his breathing’. He did go back to a normal ward after a week but then got another infection and died. He was 87 so not the same situation at all as my friend. I am imagining that things could go the same way for her too - or am I being too negative? Does this happen with intensive chemotherapy?
    Am afraid to say that chest infections can lead to pneumonia which is a common thing for cancer patients to pass away from. That does not mean it will happen to your friend, and hope you do stay positive for her. Sending every best wish for her, and to you.
  • Difficult times at the moment. My friend had her 5 days of intensive chemotherapy and then developed an infection, followed by another one. Her immune system is almost zero. She’s been moved to a room where you have to wear gowns and masks when you enter. Today she has a cough which may be yet a further infection and is now back on oxygen. 

    When my Dad had pneumonia he was put on oxygen but they then took him to intensive care ‘to help with his breathing’. He did go back to a normal ward after a week but then got another infection and died. He was 87 so not the same situation at all as my friend. I am imagining that things could go the same way for her too - or am I being too negative? Does this happen with intensive chemotherapy?
    Am afraid to say that chest infections can lead to pneumonia which is a common thing for cancer patients to pass away from. That does not mean it will happen to your friend, and hope you do stay positive for her. Sending every best wish for her, and to you.
    Thank you. I’d rather know what may happen - she really isn’t well yet people do try and talk in a hopeful, upbeat way. I don’t mean that we should all think the worse but I think you do have to be realistic, sad though that reality may be. 

    When I was visiting this week I found myself desperately trying to find a positive thing to say. ‘Lovely that you’ve got a window’ was what I said. How ridiculous. But I noticed that the 2 other visitors that joined me said the same. We also started on ‘what a nice menu’. The truth is it’s difficult to know what to say, but by being upbeat it feels as though we’re not acknowledging how bad she feels. 🙁
  • Keeping fingers crossed for her.
  • Sadly I’ve just had the news I was dreading, she’s now been looked after by the critical care team. They think she may have pneumonia. They’ve changed her meds so fingers crossed these ones help her but it doesn’t sound good.
  • Sadly I’ve just had the news I was dreading, she’s now been looked after by the critical care team. They think she may have pneumonia. They’ve changed her meds so fingers crossed these ones help her but it doesn’t sound good.
    So sorry to hear that. It doesn't look good, but who knows? Perhaps the new meds will be just what are needed. 
  • Come on Arsene's mate, get better sharpish.

  • Sadly I’ve just had the news I was dreading, she’s now been looked after by the critical care team. They think she may have pneumonia. They’ve changed her meds so fingers crossed these ones help her but it doesn’t sound good.
    Thinking of your friend Arsene
  • Stay strong AT, I know it’s tough to take, just be there for them , but look after yourself as well.
  • Hope it all works out arsene 
  • So sorry to hear that bad news @Arsenetatters. Thoughts are with you and your friend. She couldn't have a more caring and supportive friend than you.

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