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petervee
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Hello James Welcome to the forum and I hope we can share our experiences with you and that they will be helpful in some way. It's good to hear that you are generally feeling well. I was 63 when I had my transplant in May 2012. I had bone marrow failure (MDS), I had a week of conditioning chemo before transplant and was…
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Hi Really good news that your dad is home, thanks for letting us know. Hope he continues to make progress and and gets stronger each day. Anthony Nolan has lots of information on fatigue and have just this last week published a book on the subject. You can download a copy or give the Patient Information Team a ring and…
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Hi This is really good news for you all, I'm very pleased. I hope things improve day by day. Try not to worry too much about going home at this stage, everything will be okay trust me I have been there. Keep up with the TLC, lots of cakes and goodies, so be prepared. There will be off days but there will be good days too.…
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Hi Billie I would definitely recommend this event and will register for this one. My wife and I attended one last year in Leeds. There is lots of useful information given, it's an opportunity to meet members of the Patient and Families team. There is also plenty of time to meet other
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Hi Unfortunately it is very early days and from what you describe it sound exactly like what I experienced. I was 63 when I had my transplant, 3 years ago now. I was in isolation for 4 weeks, the first week was conditioning with chemotherapy. It was the affects of that which made me feel just like your father in law. I too…
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George Good luck now you are off the aciclovir, things do improve, it's just takes a long time. On an earlier question you raised about the childhood vaccines, I had most of mine just over 12 months post transplant. I should have had a gap of about a further year for the final vaccine, the live MMR one. The nurse at my…
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Hi Sharren I was talking to my wife about campath and she had a recollection of it. I did what Steve did and went through the letters we were given post transplant after each clinic visit. I found that campath was one of the three chemotherapy drugs which I was given prior to transplant. The other drugs were fludarabine…
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Josie The good news is that you are home. I think your present symptoms are normal following transplant. Tiredness/ fatigue are really common and there are many stories on this forum about how it affects us all. There is lots of information on Anthony Nolan's web site which you may find helpful on the subject of fatigue.…
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Hi LolaB Sorry to hear what sounds like a set back for you, you had obviously been preparing yourself for transplant. It might be a good idea to make a note of the questions you have for when you meet your consultant next week and have someone with you when you go to see him. I didn't have such a set back but maybe someone…
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Good news, do keep up with the food and drink it all helps and have some treats you deserve them. Best wishes Peter
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Hi I got in touch with my donor about 3months after transplant, I wrote a letter which I gave to my transplant nurse coordinator, she forwarded it on to Anthony Nolan, they then sent it onto to my donor. It was a simple letter saying thank you and letting the donor know that my whole family were grateful and that at that…
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Hi Sharren Welcome to the forum and hopefully between the members here we can help you. Not sure I can help with the specifics of campath but I have had a stem cell transplant with donor cells. My transplant was three years ago now and I'm pleased to say it was a success but not without ups and down along the way. My…
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Hi josie Thanks for your updates, sorry to hear mouth sore, hopefully medicine will give some comfort. I remember my wife bringing in ice pops for me which were kept in the ward freezer, the staff also used to make up Complan drinks with a couple of blobs of ice cream, yummy and soothing on the mouth. Keep on plodding and…
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Josie, Be a patient patient, you will be fine. Anytime you want a chat get in touch, we are here to listen and help if we can. Good luck and best wishes. Peter
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Hi LolaB Sounds like you are doing all the right things at the moment, good luck and best wishes to you also. Don't forget to keep us updated. Peter
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Hi Josie Good luck and best wishes from me too for the transplant which sounds like it may be soon. Peter
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Good news, take the pills and do the drills, and hopefully each day will show an improvement. All the best, Peter
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Hi I agree with Steve, early days yet, when they start to increase it will make you feel better too. Be patient if you can and be assured that the medical team are doing their best for you. Let us know when things improve. Best wishes, Peter.
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Hi Jonni and welcome to the Forum. It's great that you have joined and hopefully you can share your experiences with other members and likewise maybe someone can pass on tips re fatigue and anxiety which you mention. Fatigue was a huge issue for me just after transplant, I was 63 years old at transplant so maybe that had…
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They are good tips from Jon, I had forgotten the ice pops they really do help if you have a sore mouth. The nursing assistants also used to make up milkshakes with ice cream in them and did the same with Complan, the nutrition drink if you lose your appetite. I too lost the will to read and watch TV, I had a newspaper…
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Hi You are normal if you feel nervous and excited, it would be easy for me to say keep calm now 3 years down the line, but do try and stay positive. I finished work 2 weeks before transplant and was able to retire at the same time. My wife and I went away up to Cumbria for a few days to chill. When we got back time seemed…
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Hi Rob I had a similar experience with taste after transplant, it was mostly hot drinks, coffee tea which tasted metallic. My wife got me onto cordial drinks and frequently varied the flavours. Iced lolly type drinks and ice cream were also good. Wine gums were really good to restore saliva. I was discharged after…
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Hello Susie and welcome to the forum. I personally can't help with your son's diagnosis, I had something quite different (MDS). If there is someone out there on the Forum who can help I do hope they get in touch. In the meantime I wish Danny well with his chemo treatment and hope you have no further transplant delays. If…
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Hi Angela Sorry to hear that you have relapsed and have problems with WBC. I hope the new treatment will have an impact. I also hope if any other members of the forum have had a similar experience they can get in touch and share it with you. In the meantime try and be positive, try not to be scared. Keep us updated with…
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Good luck with the meeting today. Keep positive and you will be fine.
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Definitely recommend The Education Day, went to one last year in Leeds, lots of really helpful information. Also it's a chance to meet members of the Patient and Families team from Anthony Nolan and other transplant patients and carers, lots of opportunity to get to know each other. Lots of useful handouts to take away.
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Hanloumac My children are all grown up but I have five grandchildren, two of them aged 5 and 2 live the closest and we see them a lot, they do get runny noses and eyes and it very hard not to have any contact with them. My wife is like a Rottweiler when they are like that and tries to keep us apart and insists on hand…
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George, Sorry to hear you suffering with shingles, something I have managed to escape but had a near miss last year when one of my grandchildren whom we see a lot of caught chickenpox. I had been in her company a few days before she came out in spots. I contacted my transplant unit Hotline and was advised to go in and have…
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This probably varies greatly from person to person and the many various conditions requiring transplant. Speaking personally, routine blood tests in the latter half of 2011 revealed a fall in my platelet levels, the counts were monitored for about 3 months and each time the levels had dropped.I had a bone marrow biopsy at…