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2nd stem cell transplant with non Hodgkin's lymphoma

My husband has Non Hodgkins Lymphoma. He was first diagnosed in February 2009 with Follicular NHL. first chemotherapy treatment that year was R-CVP.
history since then has been repeated relapses, identified around a year after treatment.
had Zevalin one year and managed approx two years before the Lymphoma had returned.

He became aware of different approaches to the use of chemotherapy in other parts of Europe, and sought help in 2014 at Dr Herzog’s Clinic in Germany and following that a couple of visits to the Paracelsus in Switzerland.

In early 2016 He began to lose weight and it was considered the Lymphoma had ‘transformed’ becoming more aggressive.

After the usual chemotherapy lead up to STC, He had his own stem cells back 8th November 2016.

He recovered well after the trying treatment. However a PET/CT scan in April 2017 showed ‘hot spots’. He was re-scanned Aug 2017 and these hot spots were visible again. They were too small & deep to biopsy. a further PET/CT in Nov 17 confirmed further growth & therefore early relapse. The areas shown are again too small & deep to biopsy so a fourth PET/CT scan has been scheduled for February 2018.

His consultant believes from the scan results that the Lymphoma is high grade. He has strongly recommended an Allo SCT. He has said without treatment he is unlikely to see Christmas 2018. Normal chemo regimes alone may offer two maybe three years before death. In comparison the Allo STC could potentially see him achieve a ten year Lymphoma free period.


He is reluctant to embark on another SCT but remain s open minded as he has limited options available to him at this stage.

obviously we are both devastated by this diagnosis. I am so worried he won't actually go through with the allo SCT and saw this site. Wondered if anyone has had or is having similar experience.

Comments

  • Hi Jackie,
    Welcome to the forum although sorry for the reason you had to post. I have a different cancer (myeloma) but just wanted to say I have had 2 transplants (an auto and an allo) and I am glad that I did (I too was given options that were not great). You don’t say what age your husband is (I was 36) and your husband has had more treatment than I had before the transplants, which may impact what you decide to do, but I just wanted to say if your husband has done the auto, he can definitely do the allo too. The procedures themselves are virtually identical, and although the recovery time can be longer with an allo, the medical experts are getting better at them all the time. I know someone with lymphoma who needed a 2nd allo transplant - he is now 2 years post allo and doing really well. There are some real success stories out there. The situation you are in now is really daunting and so I really feel for you, but I just wanted to say there is light at the end of the tunnel and there is an increasing body of evidence that allos can be really successful for many, many patients.
    Wishing you all the best,
    Greg
  • Thank you so much Greg. Your comments are really encouraging and it's good to hear you are doing well. I showed your post to my husband (who is 53 by the way) so hopefully it may help his decision. He is going to get a second opinion but has already had tissue blood test just in case. Thanks again
  • Hi Jackie and welcome to the forum. I'm glad Greg has been able to post such a useful response which will hopefully help your husband decide on a course of action. It's reassuring that Greg has gone through what is now being suggested for your husband and has come out the other side. I'm sure there are others here who have done the same as second transplants is brought up regularly and I've certainly heard of others who have had an Allo transplant to overcome relapse following Auto transplants.

    Thank you for your response Greg, I'm sure that is very helpful to Jackie and her husband and is just what this forum is about, by sharing our experiences with others.

    Jackie, I realise there are some tough decisions to be taken and your minds must be in turmoil given the situation your husband faces. Whilst the Allo transplant carries some risks which your medical team will go through with you, the possibility of a longer period of remission sounds attractive. Many of us here, myself included, had Allo transplants and have recovered fully and there's no reason why your husband shouldn't do the same and survive another 10 years and more.

    I wish your husband and you all the best and assure you that we will be here to support you from a patients perspective throughout, together with the brilliant Anthony Nolan team, who know all the technical stuff we don't!

    Please keep in touch and let us know how you get on.

    All the best,

    Steve
  • Hi Jackie,
    I’m a community champion on this forum and I feel your post was virtually aimed at me.

    I am so sorry to read about your husband’s recent relapse. Apart from the Germany / Switzerland bit, his medical history is very like my own. I was diagnosed with high grade non Hodgkin’s lymphoma in December 1999, age 45. I had a series of relapses and treatments including an autologous stem cell transplant. When my last major relapse was diagnosed in early 2013, I was given the same prognosis as your husband - probably the worst moment of my life. By this time I was 58. I felt I had no choice but to opt for an allogenic transplant and was assured I wasn’t too old but that it would be a reduced intensity transplant.

    The first problem was finding a chemo regime I hadn’t received previously & RPMITCEBO was chosen. I hadn’t been given rituximab before as it wasn’t around when I was first diagnosed. It was tough but it did get me back into remission. I then had further chemo, total body radiation and a double cord blood transplant (as a donor couldn’t be found for me) in October 2013. I can’t deny it was far worse than the autologous one but it was well worth it. I’ve had very little gvhd and am hoping it’s a total cure.

    I appreciate that if it goes ahead, your husband’s transplants would be much closer together than mine but my advice would definitely be DO IT.

    Please feel free to use this forum as much as you need to. I’m sure Nurse Hayley will comment soon.

    Wishing you both the very best. Please keep us in touch now you’ve found us.

    Sue

  • Steve and Sue, thank you for your encouraging words. It really helps me. You are obviously strong people who have fought your own personal battles! I know one of the things my husband (Dave) is concerned about is what quality of life will he have afterwards. He has heard he could be left with permanent flu like symptoms. Although his consultant said this is not so. Also what condition will his organs be left in. Not expecting any answers but as you have been through it you know what it's like good or bad!
  • Hi Jackie,

    I am almost back to normal after my transplant, a bit weaker but no flu symptoms. I haven’t worked since then (now 63) but am enjoying an active retirement. My organs seem to be ok - I have cardiac scans and lung function tests periodically. I’ve been told to make the optician and dentist aware of the total body radiation but no problems so far.

    With best wishes,
    Sue
  • Thank you sue. That is really encouraging. I think Dave is concerned because he had his stem cell transplant in the November and was back on the golf course by January! Quick recovery! Although I know the recovery time is more with allo. Pleased to hear you are doing well
  • Hi Jackie
    I am the nurse specialist in patient services, thank you for posting. I am sorry that you and your husband have had such a tough time, your recent news must have be difficult to hear and I can understand your concerns. I am pleased that you have posted on this forum, I am sure you have found the responses helpful and hopefully helps you feel like you are not alone.

    The option of having an allograft will only be suggested if the team really think it is the right treatment choice. Unfortunately the lymphoma keeps returning which suggests that it is aggressive and he will therefore need an aggressive treatment to give him the best option. The amount of treatment he has had also needs to be considered as he wants to be as fit as possible when he has the transplant. So now might be the right time rather than giving him more treatment and delaying the transplant option until later when he has had more toxicities with chemo. You are right to have a second opinion, its vital that you both have all the information that you need and you make the decision that you agree with.

    Having an allograft after having an autograft will be daunting for your husband, treatment must feel never ending. The actual process of having a allograft is similar to an autograft but the recovery is different. The immediate side effects will be much the same with risks of infections, loss of appetite, fatigue etc. but it will take your husband longer to recover from these and they can come and go. He might also get graft versus host disease (GvHD) which although is an expected side effect, no one can predict if he will get it or not. GvHD can be treated and can even help keep the lymphoma in remission but it does need to be controlled. Long term, for the first few years it might take him longer to recover from infections than someone that has not had a transplant and his energy levels might take time to return to normal but this should all improve over time. He should not be left with permanent flu like symptoms. He will be followed up for life to monitor any long term effects of the treatment, so his heart, lungs, kidneys etc. will all be assessed routinely.

    As you can tell from the responses everybody has a different experience, some more straightforward than others so it would be impossible to say how your husband will respond to the transplant. In recent years toxicities and side effects of transplant have really improved and we can manage symptoms better, patients do not stay in hospital for so long and you can recover at home. We know more about long terms side effects and so will continuously monitor for these. In some cases quality of life can be affected and in other cases patients can return to a normal life.This is a difficult decision and I would suggest that you discuss all your concerns with your husband consultant, It might be that a transplant is the only real treatment that will offer a chance of long term remission but find out what alternatives there are and what they offer in terms of prognosis and if this affects the choice of having a transplant at a later stage.

    If you or your husband would like to discuss anything you are welcome to call me on 0207 284 8229, please keep in touch with your husbands progress.

    Best wishes
    Hayley
  • Hello Hayley. Thank you so much for your very helpful post and I am really pleased I found this site. When we saw our consultant he said that really sct was the only option now. Dave could have more chemo but that would prob only give him a couple more years and then too late for sct. I showed him your post and I think he does find it helpful. It's definitely helping me as I must admit I'm struggling with it but don't want to say too much to Dave as he is the one who has got it!
  • Hi Jackie

    I am glad that you have found this forum helpful, posting questions, expressing how you feel and sharing experiences is exactly what this forum is for, so keep doing that.

    Its ok for you to feel like you are struggling, that's normal. Often its loved ones that hold it together for the patient and the rest of the family when they are equally as affected by what is going on. What's not ok is to feel alone with that. You need support too, maybe that is through talking with family and friends or more formal support with a counsellor. Its really important that you look after yourself so you can look after your husband. You can speak to someone at the hospital or your GP for a referral.
    Also remember to take time out for yourself too, continue to do the things that you enjoy that is really important.

    Please call if you want a chat.

    Best wishes
    Hayley
  • Thank you for your very helpful and reassuring words.
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