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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Hello from a newbie!

Hi my name is Teejay and I was diagnosed with Non Hodgkin's Lymphoma in June 2011. Following multiple relapses I had a unrelated donor transplant 2 weeks today. I am doing ok, though suffering from fatigue, nausea, loss of appetite. The daily regime of Cyclosporine is getting me down, also I am struggling to drink water, so my Kidney function is at risk. My Neutrophils are above 1, but I haven't started to feel an better. Amazingly the doctors are talking about sending me home at some next week but I am weary as I feel quite lousy. I'm waiting to turn the corner and wondered what your experiences were 3/4 weeks post transplant?

Comments

  • Hi Teejay and welcome to the forum.

    It sounds like you are doing well if the docs are thinking of sending you home next week. I would say the feelings you have at the moment are perfectly normal. Fatigue is probably the thing that affects us mostly. Anthony Nolan has lots of information on line and in print on the subject, have a look they are really helpful.

    The drugs you take at the moment especially cyclosporine are something you just have to put up with, they will help to get you better in time and you can look forward to them stopping. I can remember being at your stage but that was over 3 years ago now, I could do very little for my self. Just getting up, washed and dressed at home was a huge effort. Things are going to improve but it will take time. It's difficult but try taking small steps one day at a time. When you get home my advice would be to be vigilant about hygiene to keep infections at bay, lots of hand washing and gels available to those around you and visitors.

    Keep in touch and let us know about your progress it really helps to share experiences.

    Best wishes

    Peter.
  • Hi Teejay and welcome.

    It will hopefully comfort you to know that the things you are going through are normal and that it will get better as Peter has said. It does take time though so you do have to be patient and try not to get frustrated.

    At a similar stage to you I was also fatigued, sick and feeling very worse for wear, and I too recall the difficulty drinking enough fluids to keep my kidneys flushed, despite the efforts of the nurses to make me drink water.

    I was surprised at how soon the doctors allowed me home and that was also around 3 weeks after my transplant for me too. I think as soon as they are satisfied that your counts are climbing which shows the graft is taking then they are happy to let you go home, but will monitor you closely through regular hospital visits.

    I was on Ciclosporin for over 2 years but this was prolonged due to me developing acute skin GvHD. Hopefully you will avoid any complications and will be able to come off the Ciclosporin sooner.

    Peter is right about being able to do little for yourself when you get home, but if I can offer any advice it would be to try and get up and about the home rather than laying in bed most of the time, even if it is just getting up and walking around your bedroom. I very rarely got up and consequently I lost all strength in my legs, which took a long time to recover from. A little exercise each day will help maintain your muscles and if you can build it up a little over time it may also help you recover and feel better about yourself.

    Don't try to overdo anything though as you are certainly in a weakened state. Peter's advice about hygiene at home is good and I would add that you shouldn't be over eager about seeing lots of visitors once you get home. Your body will have a better chance of avoiding infection if you are only seeing those that are close to you regularly. Introducing lots of visitors that you don't normally see would open you up to more risk of infection, so bide your time before inviting all your friends around.

    Please ask any questions if you have any concerns that occur to you. Most of us are patients who have either gone through the process or are going through it and we have great support on here too from the Anthony Nolan team, so you will find the help and support you need.

    All the best,

    Steve
  • Thanks Steve & Peter,

    I am at day 20 today and the Doctors are going to switch me to to oral Cyclosporine, with a view of sending me home by the end of the weeK! I have developed mild GVHD on my skin and they are going to give me a Steroid cream to treat it. I'm still struggling to drink water but am determined to make to it home at the end of the week so will switch to mineral water rather than the hard tap water in London. I'm eating slightly more though the portions are not vast, have lost 6 kilos whilst I have been in Hospital, my legs ache through lack of stimulation so I need to the your advice Steve and try and walk a little more than I have been doing.

    I find this forum truly inspiring especially when I read about folk being 2/3/5 years post transplant, it really fills me with hope and I know the journey isn't a smooth one, but the reward is there eventually.

    I will let you know how I get on this week take care and all the best!
  • Hi
    That is good news to be going home.

    I used to have the steroid cream and it really help me with mild GVHD. When I got home we found the best way get back into eating was to eat little and often, doing away with the usual meal times. That way I eventually got my appetite back. I also found I had a taste for different foods and cakes. Once my wife had got me up, showered and dressed I was exhausted, she would then go to the local shops and always bring me back a cake. I also got a taste for sweets especially wine gums, they helped to get my mouth watering again, we have soft water but it tasted metallic to me so l started drinking fruit cordial drinks and that helped. I used to wake a lot during the night so I kept some nibbles and a drink at the side of my bed.

    Do take small steps and set little goals if for example you feel like a walk, my advice would be not to do too much at once and to let those around you help you.

    Hope all goes well for the end of the week.

    Best wishes, Peter.

  • Hi guys,

    Things never go to plan as I have managed to pick up an infection and have had a fever for the last couple of days. So I still in Hospital and on antibiotics, have been feeling quite lousy, but today I seem to be more alert and haven't spiked a tempreture for 24 hours.

    I have been trying to cheer myself up by looking into holidays for late next year, my wife and I love the southern coast of spain and have set a target to return once I am able to travel.

    The steroid cream is helping with the skin GVHD, however I have been suffering with Diarrhoea and the Doctors want to do biopsy of my lower bowel At some point.

    So I never made it home this week, but next week is another opportunity so let's see!

    All the best.

    Teejay
  • Hi

    Sorry to hear about that, must be a real disappointment but at least you are getting treatment and in the right place. Shouldn't be long before you are looking forward to going home again. Good news about the GvHD, I think we all probably experienced diarrhoea at some point, I remember when I had a high temperature and signs of an infection I was prescribed codeine tabs which apparently helped stem the diarrhoea at the same time.

    Best wishes and I hope things improve soon.

    Peter.
  • Hi,

    It's been a while since my last post, this is mainly due to the fact that I am now at home and I have been busy traveling back and forth from the hospital for appointments. Also it's amazing what you don't get round to doing when you have a lot of time on your hand!

    It's great to be home, though the travelling to the hospital is tiring I had to go in three times last week!

    Progress wise I felt I was doing well until this week, my diarrhoea has gone and I have regained a decent level of appetite. However my skin GVHD has returned with a vengeance on my face and I am finding it uncomfortable. I'm using the steroid cream and it helps with the itching which I am also getting all over my body.

    Don't get me wrong I fully understand that my recovery is going to be a long process and I have to be patient, today is day 44, so nearly halfway to the 100. Being someone who was constantly on the go, I do get bored and fill my time watching box sets on TV.

    Today is a variant as we are expecting a visit from my daughter and son in law, so a welcome change from what is the current daily routine.

    Cheers,

    Teejay
  • Hi Teejay,

    It sounds like you're making good progress and you seem to be going through the same routine that I did in terms of visits to hospital. It's great that you're getting some appetite back which will help you regain your strength. If you can combine that with a small amount of exercise and build yourself up it will help your recovery.

    I also had severe skin GvHD and most mornings when I woke up my face looked like it had a hard crust over it. It's not pleasant at all. Take care not to rub your eyes as I did one, resulting in my eyeball being severely scratched by the flakes of hard skin. This was incredibly painful and I was unable to open my eyes. Thankfully I had a hospital checkup that morning and my medical team took me to ophthalmology where I was given some drops which brought me back to normal within a couple of days. As an aside I found being without my sight one of the worst experiences of my life and was totally helpless. I hope I never go blind and those who are have my utmost admiration!

    I also itched all over my body and when I got out of bed each day the bed sheets looked like there'd been a snowstorm from the flakes of skin. It is incredibly frustrating but I got some comfort from thiking that of the conditions that GvHD can cause it was probably one of the most manageable to deal with. The steroid cream will help and I was also on oral steroids which coincidentally also helped bring my appetite back.

    I found that having a long soak in the bath with some E45 bath oil in it gave some relief for a few hours as it left my skin feeling moisturised and softer, so I would usually have a bath for a couple of hours every evening before bed. I think I still drove my wife mad with the constant scratching which is difficult to stop myself from doing. My doctor also prescribed 50/50 paraffin cream which I used occasionally but didn't like as it was greasy and left me feeling like a deep fried chip! I also used Diprobase cream but wasn't keen on the smell (it reminded me of the smell of a mortuary) but found an alternative called Zerobase which had similar moisturising qualities but a more pleasant smell.

    For some I guess the steroid creams and tablets may work, but I ended up having Extra Corporeal Photophoresis (ECP), which I liken to dialysis and filters the problematic cells out and destroys them. If you end up going down that route I can tell you from experience that it does eventually work, though it is a long process and big commitment.

    Keep going, you sound like you are doing well for day 44, so take care and stay healthy. Day 100 will soon be upon you but there is still a long road ahead after that. Keep your spirits up and please keep us updated.

    All the best,

    Steve
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