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What to expect

Hi my husband was diagnosed with APL two and half years ago. We were told at the time that he had a 90% chance of a cure. He has since relapsed twice and has has had an auotoglas transplant which was not successful and is now in day 3 of a donor transplant.. He is very tired and has aches and burning sensations.. It has been a long journey to date and I am looking for some advice asto what to expect in the coming weeks. He is mentally strong and is 55 years old so has a lot to live for. Any advice would be greatly appreciated. Pam

Comments

  • Hi Pam.

    All of us are slightly different so we react in different ways to our transplants and recover differently too, but there are some common themes I guess. In the early days of your husbands transplant he is probably still feeling the full effect of the pre-transplant chemotherapy and I suspect is going through a really tough time at the moment. I remember being very weary in the early days, extremely tired and very weak. The chances are he'll probably feel like that for a couple of weeks until his counts will hopefully start to pick up.

    It does take a long time to get over a transplant completely as you're probably aware, but hopefully your husbands counts will have picked up enough within a few weeks to go home and continue his recovery. I went home three weeks after my transplant and it was a great feeling, though I was still incredibly weak.

    It goes without saying that he must be very careful in the early days to avoid infection whilst his immune system is rebuilding. That will last for some time but you should hopefully see his counts climbing each time you visit for a checkup. The regular checkups are reassuring and will pick up any issues or infections early. I would recommend buying a digital thermometer so that you can monitor his temperature when he gets home and pick up early signs of any infections.

    As he's had somebody elses cells back there is a chance of GvHD as the new cells will be slightly different to the existing cells in his body. He needs to be mindful of anything that feels unusual or doesn't seem right, including any rashes, itchiness, aches and pains, and stomach pains or any issues with his vision. Make sure he makes his medical team of anything that feels unusual either at his checkup appointments or when he gets home to call the hospital with any concerns.

    I can't tell you how his Allo transplant will differ from his Auto transplant but I know there are several patients on here who have had two transplants that way, so hopefully they can give you some insight.

    It's good that he's feeling mentally strong at the moment as I think being determined to get better plays a big part in a successful recovery. He needs to try and keep that spirit up and focus on the end goal of getting back to normal. Celebrate each milestone along the way, such as his counts climbing, going home, 100 days, immuno suppression being reduced etc.

    I wish him all the best and please keep in touch to let us know how he's getting on.

    All the best,

    Steve
  • Hello Pam

    It’s good to hear your husband is feeling mentally strong particularly after what must have been a very difficult two and a half years.

    It’s a terrible time of year for bugs so I advise you to ‘vet’ house guests, warn anyone feeling remotely unwell to put off their visit until they feel better. As Steve mentioned, a digital thermometer is an invaluable part of the post-transplant kit. Probably stating the obvious, be meticulous when it comes to hygiene and avoid any potentially risky foods (often the best tasting sadly) such as soft cheeses etc.

    With regards the GvHD, keep a close eye out for any slight changes such as dry mouth, dry skin, rash and no matter how minor alert the medical team. Catching GvHD early helps in the longer-term management of the condition.

    Mentally / emotionally it’s rather an up and down period. I was extremely happy to be out of hospital, however I quickly caught a stomach bug which wasn’t all that bad but emotionally it’s very worrying. Due to the fact, your husband will be avoiding crowds etc and socialising will be limited it can be an isolating time. I had a dog and I found her a great companion, walking her got me out of the house, I credit her for my positive mental health during that period as the fresh air and gentle exercise was restorative.

    Fatigue may be an issue your husband will face and it’s very frustrating, especially if you are normally a very active person. For example I’d wake up around 7/8 a.m and by 10 am I’d be having a cheeky nap on the sofa. It’s all perfectly normal, I found the best thing was to allow myself to nap in other words listen to your body. On the days when you feel you have more energy it’s important to pace yourself otherwise it’s very likely the next day the fatigue will be particularly bad. Even 2 years post the transplant my energy levels are not what they once were but little by little I have regained my energy.

    Wishing you both all the best.

    Rachel
  • Hi Pam

    I am the specialist nurse in the patient team, thank you for posting. It sounds like your husband has had a very difficult time, its no wonder that he feels tired as I am sure you do too.

    Both Steve and Rachel have offered really useful insight into recovery after a donor transplant and I am sure others will post to, hopefully you and your husband will find this helpful.
    From a medical perspective the early days of recovery are very similar to that of an auto in that he will be at risk of infections, nausea, loss of appetite and fatigue. The main difference will be that these symptoms will last longer than with the auto and will come and go over a period of months. His inpatient stay shouldn't be too much different depending on his count recovery. He has had a lot of treatment though so you should bear this in mind. One of the main differences will be GvHD, this is an expected side effect and is seen as a good sign that the transplant is working well. If he gets any symptoms such as a rash or persistent diarrhoea then he should report this to his medical team. GvHD can occur at any time but is more likely to happen when his immunosuppression is being reduced which can be a couple of months after transplant. You should look at the Next Seven Steps and the GvHD booklet as well as maybe the fatigue booklet on our website https://www.anthonynolan.org/patients-and-families/order-or-download-publications as this might help too.

    In terms of time to recover, everyone is different but it will be at least 6 months to 1 year. That doesn't mean he will feel like this for that long but it could take that time to get back to what he would consider feeling normal. Sometimes he will feel like he is not making progress but he is, its just slow. If at any time you feel either of you need support like counselling then you should discuss this with the transplant team and they can access the appropriate support for you. I am not saying this to frighten you but it can be a tough road at times and you both have already been through 2 transplants so just be aware that its normal to need a bit of help whether its from family, friends or professionals. Finally its really important that you look after yourself too, especially while he is in hospital, take some time for you and ensure that you try and do that even when he is home.

    If either of you want to discuss anything you are welcome to call me on 0207 284 8229.

    Please keep in touch.

    Best wishes
    Hayley
  • Hi Pam,

    Like your husband, I have had vast amounts of chemo and both types of transplants for relapsed non Hodgkin's lymphoma. An autologous one in 2008 and an allogenic one in 2013 when I was 59. I've got to admit that the allogenic one was far more difficult to recover from. I was in hospital for five and a half weeks (but I was warned it would be a long stay as it was a cord blood transplant) but once home, I didn't ever need to be readmitted.

    Everyone's recovery is different. I slept most of the time in hospital but other patients were using the exercise bikes, doing puzzles, reading papers etc. I had a greater issue than first time round with a dry mouth, often retching, and dreadful diarrhoea.

    I was very weak when I got home and displayed very little emotion (like a zombie, to quote my husband).

    It took about a year to recover and although I am still a bit weaker, I'm now virtually back to normal.

    I've only had a bit of gvhd skin rash and had a mild dose of shingles when my immunosuppressives were withdrawn.

    It was all worth it. I relapsed less than two years after the auto transplant but four years on from the allo I am still in remission (touch wood). I am now enjoying life to the full, walking, bird watching, travelling abroad, not to mention enjoying my food again.

    The whole process was very tough on my husband too so do make sure you look after yourself.

    Wishing you both the very best.

    Sue

  • Thanks all for your comments and reassurances. At the moment he has chronic stomach pain and associated problems. Also a sore through the. The medical team are fantastic and have assured him that this is normal and good progress is being made + day 6. It is difficult watching him suffer like he is but over the past 30 months I feel that I cope with it better now as I have seen him in worse states over our journey. Thanks again and I will keep you posted. Pam.
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