Bone marrow transplant

[21jlb]

Hello,
I have been told today that I have an issue with my blood and have to have a bone marrow transplant to try and stop it turning into leukaemia. Has anyone had this transplant before? If so I could really do with some advice on this.
Thank you.

Thank you for all of your supportive messages.
Have started to feel better the last couple of days compared to how I was last week. Queasiness has eased over the last few days.
Got a couple of sores on my tongue and an achy throat but managing to eat.
Still neutropenic so just waiting for those to come up. Red cells are ok and had a couple of platelet transfusions.
Feeling a lot brighter and positive and looking forward to going home.

Hi! Great to hear from you and glad you're feeling better and brighter. Once your neutrophils start coming up, the sores should disappear quickly. Are you on oramorph? So pleased you are feeling more positive. Two weeks have passed now so it shouldn't be too long before you go home. I remember them turfing me out as soon as my blood counts rose enough so I was in for a total of 22 days. The last couple of days I was there I was allowed to leave the isolation room. This part of your treatment will soon be over and you'll be back with your family again.

Before I forget, I'm not sure if I mentioned before, you will be entitled to a medical exemption certificate meaning all your medical prescriptions will be free do I hope you've already got this. If not, when you feel strong enough, look into this, as you will be on a lot of medication for a while. You will be given a couple of large bags of meds when you are discharged.

Hope your family are doing okay. They will be excited go see you again.

Take care

@MyNameIsArthur yes I’ve been taking oramorph but that’s been for headaches which I’ve had the past couple of days. My cyclosporine levels were high so they think that was the cause of the headaches.
My throat is feeling much better today and easier to eat and drink.
They’ve put my estimated discharge date as tomorrow, but I don’t think it will be but then hopefully it won’t be too long after.
Yes I have the free prescription card already.
Have been writing up a list of questions to ask when I leave to know the dos and don’ts.

You sound like you are in charge of this @21jlb. My thoughts are with you.

Hi there wow! So are you home now? That's great news they were talking about discharging you. I hope it has happened. What are your blood counts? How are your headaches now? Cyclosporin can have some unpleasant side effects. It made me very nauseous. Glad your throat is better. Have you had your questions answered? The worrying thing now is the delta variant is on the rise and the govt are doing away with covid restrictions so you may have to shield for some time. My wife and I had to avoid as much as possible indoor gatherings and I stayed out of shops for a while but I was lucky there was no pandemic back then. I appreciate the extra challenges you have that I didn't and I hope you'll be okay.

Still here! They’ve been saying since Monday you can go tomorrow but then tomorrow comes and there’s something else. Hopefully tomorrow, they just need to adjust my cyclosporine levels, so fingers crossed!
Not sure what my levels are but they are happy with them and said my new donor cells are creating white cells nicely.
Had my talk today, I haven’t got to isolate but still be sensible and avoid crowds. I can see family members but - hands, face, space. It wasn’t as over the top as I thought it would be when it came to food, cleaning etc.
Just daunting about the GvHD, infections and future hospital stays. But they gave me a lot of information. Looking online it goes from one extreme to the other.
Also have to try and find light long sleeved summer clothes. Will avoid the sun as much as possible but also have the kids summer holidays coming up.

Oh gosh! Have you got out now? That's brilliant your new donor cells are creating white cells. Thats so promising. After about a month they will start doing a chimerism blood test which gives you a % of your new cells. Ideally it will be 100%. I was told the first one done at one month is not altogether reliable and at three months gives a better idea of where it's going. My chimerism dropped to around 60% at 3 months and I needed 4 top ups of donor stem cells (donor lymphocyte infusions) over a period of a year or so which got it upto 96%. When my chimerism dropped to 60% , I was also quickly weaned off cyclosporin as it was suppressing the new cells too much which needed to fight off the old cells. From time to time you might find your blood counts drop when you get an infection. Platelets are more wobbly and can drop alot. They will go back up again once the infection goes.

Glad you had your talk. Much of it is common sense. Is all about avoiding viral, fungal and bacterial infections as you know. Covid being the big virus to avoid right now. Some people have been told to temporarily rehome their pets but we were never going to do that with our cats! They are family! I just avoid face to face contact with them. I was told not to have indoor plants, avoid compost heaps and even building sites because of spores from building materials. In reality I was just very careful and generally it wasn't too difficult. I did get infections from time to time the worst being shingles. Later on I got all the childhood vaccinations again.

Gvhd was probably the biggest worry. I was lucky and didn't get it as far as I know and I hope you don't. They say a little is good as it shows the donor cells are fighting. Hopefully the cyclosporin will keep it well balanced. All you can do is deal with each day at a time .

Yes put on lots of sun cream and keep covered up. You will want to be out and about with the kids over the summer holidays but as long as you are sensible, which you are, you will be fine.

Hope you are feeling okay now.

Wishing you well @21jlb

@MyNameIsArthur what an amazing person you are

@SummerLovinnn aww thank you. I don't think I am but thank you for saying so lol.

@21jlb hope you're okay and back home now

Hi - yes I came home on Thursday, so pleased to be back! Had a couple of follow up appointments and blood tests and all is looking well.
Feeling ok, just tired and lacking in energy at times - and the heat really isn’t helping with that.

Hi! That's great you're home now and back with your family. How often do you have to go back each week to the hospital? Brilliant you're bloods and all are looking well. Any sign of gvhd? Being tired and lacking energy is to be expected so best just to rest when you need to. Is harder with young kids though I suppose. I can imagine the heat has been very uncomfortable for you especially if you have had to make frequent hospital trips. Hope you're alrightand continue to improve

@MyNameIsArthur I should just be going back twice weekly but had some other appointments in between plus a platelets transfusion. Hoping that once my platelets stop dropping again then it should just be once a week. I don’t mind the appointments but it always turns out to be a long day - I was there 8 hours yesterday when I should have been finished by lunch time, due to staff shortages.
No signs of GVHD yet, I don’t think. Have had the odd mouth blister and rash but the doctors haven’t been concerned.
My energy levels seem to be increasing slightly again, not feeling as exhausted.
Feel awful for my kids at the minute as can’t do much during the summer holidays as need to avoid crowds or rely on others to drive me. Don’t feel comfortable driving yet due to tiredness as sometimes it just comes on and worried about public transport.
Apparently I have some covid antibodies which is good, they’re sure for how long but at least it’s a little protection until I get the jab in a couple of months.

Hi!

How are your platelets now? Have they stabilised? I hope they're okay now and you can reduce your appointments. They are long days and tiring but must be even harder at the moment with all the covid rules in hospitals. I was able to go to a Macmillan "Mustard Tree" centre within my hospital to sit and relax in a peaceful setting and a volunteer there bringing me coffee and biscuits and having a chat. I guess they are not open during the pandemic.

Glad there are no signs of gvhd and your energy levels have increased a bit.

Don't feel awful. You've just been through major medical treatment. They are just happy to have their mum with them. It won't be long before you start to feel normal again and start doing things. Maybe next year you can all do something special together as a family. I wouldn't have much in the way of expectations for this year. Youre doing the right thing not driving right now and is important to avoid public transport even if there wasn't covid. Is hard I know.

Good news you have antibodies. I know its all a bit rubbish right now but in a year's time you'll look back at all this as something that happened in your life in the past and you can move on to your next chapter

@MyNameIsArthur yes my platelets seem better this week - they were at 90 compared to 30something last week. Red cells currently 115 and neutrophils were 3.3 I think which they said was good?
Still going twice a week at the moment but some days are just a blood test then a telephone appointment.
There is a centre there called the Maggie’s centre where you can go while waiting, which sounds similar to The Mustard Tree.

So glad all is going well @21jlb, thank you so much for updating x

That's really good! They are moving in the right direction! Your red cells and neutrophils are within normal range. Your platelets are still below the normal range but have tripled in a week! So that's brilliant news. You probably already know all this anyway, but if not and it helps, here are the normal ranges:-

Platelets : 150 - 400

Haemoglobin : 115 - 165

Neutrophils : 2.0 - 7.5

White cells: 4.0 - 11.0

Lymphocytes: 1.5 - 4.5

Hopefully since you last posted your message, they have improved further.

Sounds like the appointments are getting a little easier in terms of frequency. Do you use the Maggie's centre? I was so glad the Mustard Tree was there. It made it more bearable. We had an hour and a quarter car journey to the hospital three times a week and it was a long day, so was glad to have the centre to go to and relax in, and often sleep in lol.

@MyNameIsArthur only had to go in once last week for a blood test then the rest was on the phone and didn’t have to go back for the second appointment. Up there again tomorrow, luckily it’s only 20mins away unlike your long journey. I do feel for those who have to travel such a long way.
I’ve used the centre once. Most of the time I pop to the canteen then back to the waiting area, but it’s good to know the centre is there to use.
Have managed to have a few days out with the kids this week and feeling good in terms of energy levels.
Hoping to start back working from home from the beginning of September.
All seems to be on the up at the moment.

That is a really quick reduction in your appointments! That's good. They must be happy with your progress. Am glad it's only 20 minutes away for you as you have kids and then work at some point, so a longer journey would be a lot more stress for you. We made our dream move to Cornwall and weren't concerned too much about the distance to the nearest hospital as thought it would be another 20 years before we would have to start worrying about hospitals. Turned out to be 9 months lol.

I'm so pleased it all seems to be on the up and your energy levels are returning. Its nice for you to get back out again with your kids. They will love spending time with you. I hope you manage okay with working from home in September.

Have they carried out a chimerism test on you yet?

@MyNameIsArthur yes they took those bloods this week, they didn’t discuss it during the appointment, and I didn’t think about it at the time. But haven’t got an appointment until the 6th now so will mention it then.
Have now got an infection on my lungs again so on antibiotics, they’ll check in on me next week.
My husband is in hospital now too, just over a week and will be in there at least until after the bank holiday. Had his appendix taken out but had issues with an infection and his bowel. Never rains but it pours.

Hope you are keeping well.

Hi the chimerism test results take longer to come back. Hopefully you will get it soon. its a good indicator of how your new cells are doing. I was told the first one at a month post transplant isnt as reliable as the test further on. however, it will be nice to get a 100% test result. I hope your appointment on the 6th goes well.

Im so sorry you have an infection on your lungs and your husband is now in hospital! blimey you have all been through so much and could do with some luck. I hope the antibiotics are working for you and hope your husband recovers soon and will be okay. do you have any help from other family members with your kids as it must be hard for you to deal with everything right now?

I am doing okay. having problems with my phone and tablet at the moment as not charging up properly so thats stressing me out at the moment. also, braved going to a garden party at the weekend. the first social event we have been to in 18 months+ due to covid/shielding. had a nice time but yesterday found out someone else who was at the party has tested postive for covid. we did a lateral flow test yesterday which proved negative but is a worry. however, compared to what you are going through right now, my problems are small and less concerning.

I hope you will be okay and recover soon. and your husband too. take care

Hi no need to reply. Maybe a 👍 if you feel able to (or 👎!) . Just hope you and also your husband are okay

@MyNameIsArthur sorry for the late reply, haven’t had much chance to get on here.
My husband came out of hospital last week, but back in again yesterday, all fun and games.

I’m feeling better than I was the other week. Had a telephone appointment today and all is looking well, don’t need a face to face for about a month, just need to go in for bloods in the meantime. Then the dreaded biopsy towards the end of the month.

They said my chimerism levels were a little low at the end of August but will have another test in two weeks.

Hi! No, don't apologise. You've got a lot on your plate right now. I'm sorry for my late reply. My wife has been having heart tests as she has a few problems with it.

I'm sorry to hear about your husband. What a worry for you. Is he out now? I hope so.

Glad you're feeling better. Oh no you have to have a biopsy! Poor you. I never had another biopsy after my transplant. They just went by my chimerism test. It's good they are doing the biopsy as it's the best way to test you're in the clear. Could you ask them for sedation? That's what I did. I wasn't brave!

Do you know what your chimerism % was? I hope it's not as low when you get it tested again.

@MyNameIsArthur yes my husband is back home and recovering. All just getting over colds now.
Had my biopsy last week, braved it out with gas and air but absolutely hate them, always feel sorry for myself after them but take the opportunity to just lay on the sofa for the day when I get home.
Think they said they do one after a year too, that was my 5th one.
Got the doctor tomorrow so not sure if they’ll have the results back, they said they are checking this for the chimerism so will hopefully get some good news from this.

Hope all is ok with your wife x

@MyNameIsArthur just to let you know I met with the doctor yesterday following my biopsy last week, only got partial results back so far but it shows there are no abnormal cells. Two out of the three chimerism things they look at are 100%, the other is around 78% but they hope that when I come off the ciclosporin this level should come up if not I’ll need some extra cells from the donor like a top up. This would be done as a day patient similar to a transfusion.
My ciclosporin has been dropping down so should hopefully be able to come off of it when I next go back in two weeks.
So far it’s looking good