Bone marrow transplant

mummy4

Hi, my fiance has just been told he needs to have a bone marrow transplant. Would love to hear from anybody who has had one of these or knows someone who has. I'm so worried, is there any support for people who need to have this done?

Rushwan

Hi there, I was told nearly 2 years ago I will need a bone marrow transplant in the future, so I know the utter shock and devastation your fiance is feeling now. I am under the care of the Colman K Byrnes unit in Beaumont Hospital, and cannot praise highly enough their care and dedication to the job. They also talked me through what the future holds (basically waiting til my own bone marrow gets bad enough to need a transplant-tbh that's nearly the worst part-not knowing when it will happen) I attend the clinic every 3 monthe with a bone marrow biopsy every 6-9 months. They also asked that my siblings get tested to see if they are a match to my bone marrow (unfortunately they are not so the transplant will come from an anonymous dodor) They also told me not to try not dwell on it too much, which is impossible, it's on your mind 24/7. I am considering going for counselling through my job, I find it affects my concentration, thinking about it all the time, and it's also hard on my family, tho they are great and very supportive. I have done the mini marathon a couple of times for the bone marrow for leukaemia trust, they are based in St. James Hospital, where most, if not all transplants take place. Their number is 4738314, I'm sure if you call them they will be able to provide info for you both. I would advise against looking up bone marrow transplants on the internet, as this will really scare you,(There is really TOO much information on there to take in) talk to the bone marrow trust, or the hospital/clinic where the diasnosis was made. Best of luck, you can post back here or pm me if you want any more info

CodeMonkey

I had a bone marrow transplant from an anonymous donor in St. James about 3 years ago. Everything went fine for me without any major complications. The staff in the hematology ward were fantastic. If your fiancé is going to get a bone marrow transplant there then I am sure they are more than happy to talk to you about the process and give you any information you need regarding support for the patient and their family. Post back or pm if you want any specific information about my experience.

mummy4

Hi guys thanks for posting back! Rushwan I made the mistake of looking it up on the net and I just go more and more confused! Although I did read alot of positive stories too which gave us some comfort so try not fret too much (though I do know how hard it is to not think about it). Codemonkey I would love to hear about your experience of having this done ie how long you were in hospital for, were there any complications for you etc etc. If you like PM me or maybe just post it up here. His 2 brothers had the blood test done yesterday to see if they are a match, we'll find out in 2wks if they are or not.

garbanzo

My big sister had a BMT five years ago in St James's Hospital, Dublin. My brother and other sister and I were tested for compatability and my brother was the closest match. Operation was successful and she is fighting fit, back at work, loving life and is godmother of my five year old daughter. A living breathing success story. Lots of them out there so be positive. It's a tough, tough road but keep positive. You''ll hopefully attend a few "Pink Lilly Balls" for fundraising too afterwards. Great events.

Best of luck to you.

mummy4

Thanks for sharing that Garbanzo, I really love hearing positive stories like that, so glad your sister is doing well. x

CodeMonkey

Well here goes. I was a relapsed acute myeloid leukemia patient and basically the only real treatment that had any success of a cure that's more long term than chemotherapy is a bone marrow transplant.

My siblings were tested to see if they can be donors but they weren't compatibility. I was told that the chances of finding an anonymous donor if you are Irish is quite high. I forgot what the reason is, something to do with the fact that Ireland is a small island without much genetic diversity from immigrants. The problem for me is that I am asian.

So the chances of finding a match for me here is pretty low. That got my mom and girlfriend quite upset as you can imagine. It got me depressed too. The hospital eventually found a match for me through the bone marrow donor registry who look for matches abroad. The bone marrow stem cells are extracted from donor, put on ice and flown here.

I spent about 6-7 weeks in the hospital for the transplant which is only a little longer than I would stay in the hospital for a course of chemotherapy. The pre transplant drugs, some t-cell suppressant I think, and radiotherapy made me very ill. They were hard treatments to make sure there are no cancerous cells remaining in the body before they give you the transplant.

Anyway, the 1st 2 weeks I was pretty sick but recovery was pretty swift in my case. I was warned that I can get very sick and any sort of serious infection will probably send me to ICU but nothing of the sort happened.

I got a high temperature on several occasions from infections but they were nothing serious. I was very bored when I have no visitors but I had a laptop and wireless broadband to give me my online fix.

I was recovered enough to go home after about 6-7 weeks. Took it easy for about a year and then got back into work. My life have gone back to pretty normal since.

mummy4

Hi Codemonkey thank you for posting that it answered a few Q's I had! I'm so glad your doing well it gives me great hope when I hear stories that have a happy ending!

Has anyone else got any similar stories to share??

tbh

lads do you have details for where people can go to get tested to see if we're a match for anyone?

sam34

i *think* the IBTS do it

lonestargirl

sam34 wrote: »

i *think* the IBTS do it

Yes they do (info). The last time I gave blood I was asked if I wanted to put my name on the initial list - you may then get called for more in depth testing if you match at that stage.

mummy4

tbh wrote: »

lads do you have details for where people can go to get tested to see if we're a match for anyone?

Hi tbh here are the contact details:


Where can I apply to be a bone marrow donor?
The National Bone Marrow Registry is based at the National Blood Centre, the headquarters of the Irish Blood Transfusion Service. Their address is: James Street, Dublin 8. Tel: (01) 4322800; Fax: (01) 4322930; Email at bonemarrow@ibts.ie

Bendix1

My sister has just had a BMT (AML) 11 days ago. Another sister was her donor. She is quite sick at the moment but as expected the doctors as saying! My query is if anybody had the experience of staying in the St. James's apartments while they or their loved one was released from St. James. She will have to attend the hospital on a daily basis, which is what I understand will happen. I am trying to plan ahead for her release day but we all live in Athlone and all have small children along with a Father that's profoundly disabled and we already have a rota in place for minding him. What help is out there or how have others provided 24hr care for their loved ones? Any suggestions or advice would really help as we are in the dark here!!

HomelessMidge

Bendix1 wrote: »

My sister has just had a BMT (AML) 11 days ago. Another sister was her donor. She is quite sick at the moment but as expected the doctors as saying! My query is if anybody had the experience of staying in the St. James's apartments while they or their loved one was released from St. James. She will have to attend the hospital on a daily basis, which is what I understand will happen. I am trying to plan ahead for her release day but we all live in Athlone and all have small children along with a Father that's profoundly disabled and we already have a rota in place for minding him. What help is out there or how have others provided 24hr care for their loved ones? Any suggestions or advice would really help as we are in the dark here!!

I'm actually in St James myself just after having my BMT. Transplant day was the 20th. I'm sure there is a lot of help out there. Ask to see the social worker for the ward and they can be of help. Or even speak with the cancer society which are in the hospital. Best of luck to your sister and hope you get all the help you need.

Bendix1

Tnxs for your reply. I have managed to meet with the social worker who is very nice and helpful. Best of luck to you with your recovery, hope its going ok for you.

grotmaster

Bendix1 wrote: »

My sister has just had a BMT (AML) 11 days ago. Another sister was her donor. She is quite sick at the moment but as expected the doctors as saying! My query is if anybody had the experience of staying in the St. James's apartments while they or their loved one was released from St. James. She will have to attend the hospital on a daily basis, which is what I understand will happen. I am trying to plan ahead for her release day but we all live in Athlone and all have small children along with a Father that's profoundly disabled and we already have a rota in place for minding him. What help is out there or how have others provided 24hr care for their loved ones? Any suggestions or advice would really help as we are in the dark here!!

How is your sister getting on? Any Graft vs Host Disease to report? I finally got my GVHD almost two years post Allogenic BMT, and that was after an Autologus transplant initially. Chronic, of the liver and gut, and I need to attend the Day Ward in James' three times weekly. Still alive, though. I've probably seen ye both on the Day Ward, or even in the corridor to Burkitt's. Chin up; it's a long road, and bloody hard too. But, what we cannot control, we must accept.

Luke92

grotmaster wrote: »

How is your sister getting on? Any Graft vs Host Disease to report? I finally got my GVHD almost two years post Allogenic BMT, and that was after an Autologus transplant initially. Chronic, of the liver and gut, and I need to attend the Day Ward in James' three times weekly. Still alive, though. I've probably seen ye both on the Day Ward, or even in the corridor to Burkitt's. Chin up; it's a long road, and bloody hard too. But, what we cannot control, we must accept.

I got gvhd a few weeks post transplant (sibling transplant). Got it of the skin and was put on steroids (steroids are so hard on the body!). That cleared up and I now have gvhd of the mouth. On soluble steroids so not too bad.

Thankfully my liver and gut have escaped so far! More of an annoyance as If I hadn't of got gvhd in the mouth I would be off my anti rejection drugs by now.

Not a nice thought thinking its always gonna be a possibility, but hey at least its killing any cancerous cells!

grotmaster

Luke92 wrote: »

I got gvhd a few weeks post transplant (sibling transplant). Got it of the skin and was put on steroids (steroids are so hard on the body!). That cleared up and I now have gvhd of the mouth. On soluble steroids so not too bad.

Thankfully my liver and gut have escaped so far! More of an annoyance as If I hadn't of got gvhd in the mouth I would be off my anti rejection drugs by now.

Not a nice thought thinking its always gonna be a possibility, but hey at least its killing any cancerous cells!

You said it! I had no GVHD at all until 2 DLIs later. Don't have it so bad on the liver/gut either, 70mg Pred daily. Out of it something shocking on the roids though, nearly prefered the Melphelan chemo! How long were you in Burkitt's? The GVHD is a bittersweet process indeed, I hope that my Lymphoma is getting it's ass kicked atm.

Luke92

grotmaster wrote: »

You said it! I had no GVHD at all until 2 DLIs later. Don't have it so bad on the liver/gut either, 70mg Pred daily. Out of it something shocking on the roids though, nearly prefered the Melphelan chemo! How long were you in Burkitt's? The GVHD is a bittersweet process indeed, I hope that my Lymphoma is getting it's ass kicked atm.

Between October and February I was on burkitts for about 12 to 16 weeks. I had Acute Myeloid Leukaemia.

I was started on 140mg of pred for my skin gvhd I pretty much had all of the side effects! For the gvhd in my mouth I'm on 20mg of soluble prednisolone. Just rinse and spit.

grotmaster

Luke92 wrote: »

Between October and February I was on burkitts for about 12 to 16 weeks. I had Acute Myeloid Leukaemia.

I was started on 140mg of pred for my skin gvhd I pretty much had all of the side effects! For the gvhd in my mouth I'm on 20mg of soluble prednisolone. Just rinse and spit.

Are you on Cellcept, Tacro etc? I get to swallow 42 pills daily, they gave me Olanzipine to reduce the roid madness but had to change it to Haliperidol cos of liver interaction. Horrible stuff, though at least we can say that we were well warned in advance. The thrice weekly visits to the day ward are really killing me, even in our air-conditioned luxury. Have you read up much on GVHD?

Luke92

grotmaster wrote: »

Are you on Cellcept, Tacro etc? I get to swallow 42 pills daily, they gave me Olanzipine to reduce the roid madness but had to change it to Haliperidol cos of liver interaction. Horrible stuff, though at least we can say that we were well warned in advance. The thrice weekly visits to the day ward are really killing me, even in our air-conditioned luxury. Have you read up much on GVHD?

I'm on cyclosporine myself and 4 other medications including the pred. Not too bad but I was in the same position as yourself of 20+ tablets a day!

I'm down to every 2 weeks in the day ward. Soon I'll be in the late effects clinic. My transplant so far has been very successful. Got 100% graft and haven't needed any blood or platelets!

Still quite anxious about the sperm count. Have to wait another while until I visit the HARI clinic and see how the swimmers are doing (if there's any).

grotmaster

Luke92 wrote: »

I'm on cyclosporine myself and 4 other medications including the pred. Not too bad but I was in the same position as yourself of 20+ tablets a day!

I'm down to every 2 weeks in the day ward. Soon I'll be in the late effects clinic. My transplant so far has been very successful. Got 100% graft and haven't needed any blood or platelets!

Still quite anxious about the sperm count. Have to wait another while until I visit the HARI clinic and see how the swimmers are doing (if there's any).

I forgot about the **** bank! Pretty certain I'm firing blanks these last two years, got semen frozen but unlikely that it'll ever be thawed out. Late effects in a few weeks? Jammy bugger. The Late Effects clinic is the holy grail of the transplantee: Monday appointments, minimal queuing, Aileen looking after you, off the Cyclosporin, back to some semblance of a normal life. This is my fourth year of treatment and I'm well sick of it now. I was Stage IV-B and the Hodgkin's Lymphoma returned after 4 successful eliminations. How long since you were diagnosed?

Luke92

grotmaster wrote: »

I forgot about the **** bank! Pretty certain I'm firing blanks these last two years, got semen frozen but unlikely that it'll ever be thawed out. Late effects in a few weeks? Jammy bugger. The Late Effects clinic is the holy grail of the transplantee: Monday appointments, minimal queuing, Aileen looking after you, off the Cyclosporin, back to some semblance of a normal life. This is my fourth year of treatment and I'm well sick of it now. I was Stage IV-B and the Hodgkin's Lymphoma returned after 4 successful eliminations. How long since you were diagnosed?

I thankfully haven't been at this too long. I was diagnosed October 2013 and had they transplant on 20th of January! Had first chemo then was told my sister is a full match and because I was young (21) and healthy (excluding the life threatening leukaemia), that a transplant was best. Had two more sets of chemo then transplant.

But from talking to people on day ward and burkitts I know most people been at this for years at a time. I was never given a stage, just told well you have AML were starting chemo and that's it. Was in remission after my first set of chemo. Then on the second set transplant was recommended so I took it.

LegacyUser

Hi Im new to boards, but my husband was diagnosed with AML in May 2014 he relapsed June 2016 Has had a BMT on 25th Oct 2016 from an unrelated donor. He has had a really difficult time of it with acute GVHD CMV virus and BKV virus, fungal infections, and has been hospitised twice since transplant, he is under 52 kgs and the steroids have had a terrible effect on his humour. Im at my wits end and find it so difficult. Has anybody been through all this, and if so is there any light at the end of this. I don t mind the hospital visits and day ward, its the humours, I find really hard to cope with. Im on part time careers leave and work too and Im trying to keep it all together, with family etc would appreciate any advice thank you