Advice on getting through stem cell transplant

Pre-transplant
1

Hi Everyone

                 I know this has been  discussed on here before because I've read some of the discussions. Well where to start? I was diagnosed late 2010 a few months after losing my Mother to Breast Cancer!!  Bad luck or what.They actually diagnosed me in the same hospital that my Mother was treated at and I could not believe what they were saying but who does? I'm from manchester but had my treatment in North Wales because most of my remaining family live there! They put me on AML 17 trial and the first chemo was unsuccessful in getting me into remission.So they upped the ante on the second round giving me FLAG IDA which thankfully did the trick. I think you all must know the feeling of sitting in isolation wondering whether your treatment has worked? Well you also know the feeling when it does your on top of the world! Anyway my consultant told me that my best chance of long term survival was with BMT/PBSC I was referred to The Christie after 5 months in hospital. The search began they searched the national,european and international registers but because of my rare tissue type no donor was found! They did eventually find a 10/10 match which is the best you can get from an unrelated donor.it was a Cypriot donor but for whatever reason they decided they didnt want to go through with it! Devastated was how I felt the only person in the world at that time that could help me decided they weren't going to.So they continued to look and monitor me and the time passed.I went back to work and did a lot of travelling Egypt,trekked in the Himalayas,travelled in Thailand!

Nearly three years passed and my consultant was teling me that it was unlikely to return at this point! Then I returned home from Thailand in Feb 2014 after an amazing time. They took bone marrow before I left and when I returned they gave me the news that my gene had mutated again (t6;9). So I was back to square one in a few months I would relapse. Ive been through a further 2 rounds of chemo FLAG IDA and ARA C and as far as I know I’m in remission again ;-), This time thanks to advances they are able to offer me a transplant this time from x2 umbilical cords. So I’m now at the point where I’m questioning whether i should go through with this? I’m still only 37 and I’m an active person and to be honest some of the long term side effects and possible infections I’ve read about do scare me.My doc said I would probably go 18 months before relapsing on average but I’m not average.I lasted longer than anyone expected the first time round!

So what I would like to know from you guys that have been through transplant is.

Are you the same person when you come out the other side?

Are you able to do the same things as you did pre transplant?

How long does it take you recover?

What are the main side effects/infections?

Has anyone had any lung complications due to transplant?

Anyway thanks for reading this :wink:

2

Hi there.

I had a transplant about 18 months ago as part of my treatment against ALL. I got into remission very early in my treatment but my best chance of long term survival was a BMT which I had in January last year as I was in a high risk category for relapse.

As far as being the same person after transplant as before is concerned I say I am, more or less. I do most of the things I did before my illness and at the moment my only restrictions are due to the slowly reducing immune-suppression. Once this stops I expect to be able to do everything that I could before transplant. Until then I am slightly restricted from the work I did (as a construction project manager) due to the risk of infection associated with building dust, but I should be able to return to normal at some point soon.

As far as everything else is concerned my life is more or less normal.

It does take a while to recover, there is no doubt, but everyone will be different. For me I would say I was getting somewhere near back to a reasonable level of fitness 6 months after transplant. My advice would be to keep active and exercise if you can. I didn’t and lost a lot of fitness because of it. My leg muscles in particular became weak, so walking and climbing the stairs was difficult. This was probably due to me being lazy and choosing to lay in bed rather than getting up and about and keeping my legs going.

Until your immune system kicks back in you are at risk of all infections, and I guess chest infections are probably the main on, though infections in your digestive system are probably another. Just be sensible about where you go and who you see, and avoid the risk of picking up infections until your immune system has some level of tolerance.

I haven’t had any complications post transplant with my lungs, though I do have GvHD (Graft verses Host Disease) which affects my skin. This makes my skin dry and itchy but is controllable and I am having additional treatment to bring it under control. GvHD can also affect your lungs, gut and eyes but I have no idea how common it is in transplant patients.

Be under no illusion that a BMT will knock the wind out of your sails for some time, but think of the alternative. Personally my recommendation would be not to hesitate and not to worry about the process, but that’s easy for me to say in hindsight. Everyone is different. You are 10 years younger than me so your experience will be different.

I hope this helps and I’m sure others will share their experiences to help you. Whatever your choice is we will be here to support you through it all on this forum, and I wish you all the best.

Steve

3

Many thanks for your reply Steve.I’m glad to hear you are recovering well

I think like most things in life it is the anticipation that is the worst. The fear of the unknown. I know I can deal with Chemotherapy because I have done on 4 separate occasions now. This last one did take a bit longer to recover though my blood is normal but it took 50 days this time.

The alternative would be that I would be in remission for a shorter period this time and when the AML returned it would be more difficult to treat also I might be too old for full intensity transplant if they were able to get me into remission again!

Unfortunately my family are not very supportive as i don’t have a partner I feel I will be unable to cope at home when they release me from hospital.I do have a couple of people I can rely on and I’m grateful for this

Anyway I don’t want to sound like I’m whinging and I know that I’m lucky that I have this chance of cure. I know some people don’t have this chance

4

Hi AMB

You have posed some difficult questions above but hopefully our responses may help in some small way.
The important thing is as Steve says we are all different and that not everything that you hear or read about will effect you, there is lots of information out there.

I had a stem cell transplant 2 years ago at The Christie, it sounds like you may be going there, if you are then you are in good hands and will have the benefit of the new transplant unit which I have visited, if you are visiting the Christie the transplant coordinators are very helpful and if you ask they will show you the unit and maybe if you want, arrange for you to speak personally to a post transplant patient, I have done this and it really helped the other person.

I was 63 years old when a routine blood test picked up a low platelet count, over a couple of months further tests were done, each time the platelet level had dropped. I then had a bone marrow biopsy and was diagnosed with bone marrow failure ( hypoplastic myelodysplasia). I was referred to Christie . Because of my age and being in reasonable health, I was working and had no symptoms, I was offered the stem cell transplant as the only cure.
It was a shock and a decision had to be made. Lots of written information was given and it all appeared grim. I did have the support of my wife and family and we went ahead with it. I know now it was the right decision.

The experience wasn’t pleasant for me I will admit, maybe because I was older than you or maybe the treatment differs from case to case. I was very lucky to get an unknown donor from the Anthony Nolan register who was a perfect match. The transplant has been a complete success for me.

To try and answer your questions, the same person, mentally I hope so, emotionally, I feel so grateful to so many who have helped me through this not least my Donor, my wife and family and the number of friends who have helped along the way. And to Anthony Nolan who have given me the chance to do a little in return.

I cannot do the same things as before, I am now retired. My recovery was 12 months and that was what I was told to expect. I got pneumonia 4 months after transplant which set my recovery back. I don’t have the same energy levels and do get a little breathless, so I do things slower when I remember, I’m still able to go walking, do some decorating and get away quite frequently.

Infections are a pain especially for me when in contact with grand children who over the winter months always have cold like symptoms or even chickenpox. Christie have a helpline phone number and can usually deal with most things like viruses or a persistent cough, one phone call usually sorts any issue out. Be vigilant about cleanliness especially in public places it does help to keep bugs away.

You’ve been through a lot already so I’m sure you will be okay. Keep in touch and lets us know if we can help any further, let me know if your treatment is going to be at the Christie. I go for check ups every 3 months now. In the room opposite to me when I had the transplant was a chap from Llandudno, we were in isolation so couldn’t communicate other than to wave every day. I only got to know him at the post transplant clinic.
Finally, hope you not getting bored, the Unit has a reunion dinner every year, last Summer I went for the first time and we sat at table with a lady who had had a transplant over 25 years ago, she was in her 70s and looked very well and she thought I looked well just over a year post transplant. Proof that they work!

Best wishes
Peter

5

Dear DieselDrinker62. You pose some interesting questions. My husband had a BMT (after having several of the treatments that you mention). It wasn’t much of a choice really - and he was, luckily, matched up really quickly. Post-BMT his issues have been around fitness - he is about to lose his job because he can’t get back to work full-time. I suspect, and this is something alluded to by AMB, that it’s because he hasn’t worked that hard at his fitness levels. All his energy has been taken up with doing the work that he can, and getting on with life. 1 year post-transplant and his thoughts are now moving to how to move to the next stage in his fitness. He is in his early 50s though. It is different for everyone. The coming home from hospital wasn’t too bad - he could get up, make his own food, get to the loo etc; and 3 months later he was back to doing many of his pre-transplant things. Luckily he hasn’t had any infections, but has required further ‘boosts’ of cells. Is he the same person? No. And Yes. No, because he can’t work at the same levels, and his head is in a different place; but, yes, because he is alive and taking an active part in his family and local community. Talk to your clinical team; think about what kind of life you already live and how perhaps not travelling so much might impact on that. There are people out there to talk to and who will support you. Good luck!

6

Hi AMB,

I’m not sure there’s much I can add that the others haven’t already covered, but I wanted to reply as although I’ve had ALL rather than AML, I had a similar situation. when I was first diagnosed (2005), an unrelated donor was found, but my doctors decided a transplant wasn’t the best option at the time and I had maintenance chemo instead; all good until I relapsed last October, five and a half years after finishing treatment.

I remember my consultant saying that as the leukaemia had returned, they needed to take a different approach this time, which would be the transplant. After she said that, I always considered the transplant a ‘bonus’ opportunity to get better and possibly kick the leukaemia out for good, so it was a positive and exciting route to be taking – albeit a bit scary, too! Although I was only 31 when I had the transplant, I had reduced-intensity conditioning because of some possible problems with my liver, which they thought might have put me at too high a risk if had we gone for the full-intensity work-up.

I’m now 110 days post-transplant, and – touch wood – so far, so good. My energy and concentration levels are lower than before, and vary quite a lot from day to day. I’m being weaned off the immuno-suppressant and doctors are happier for me to get out and about, which I’ve been doing and enjoying. They told me some patients start going back to work (building up, rather than straight into 35 hours a week) 6-9 months after transplant; in the meantime, I’ve tried to make the most of the energy I do have to get on with some little projects of my own, and to get involved in various little things that I can drop out if and when necessary.

Good luck and all the best!
George

7

Ok many thanks for all your responses everyone!

                                                                             Time is drawing closer now and I'm due to be admitted to the Christie on the 23rd of this month to start conditioning. You all seem to have had reasonable experiences for what you've been through. Your comments have helped to ease my anxiety a little. On my last appointment I had to sign the consent form for the transplant and the Doctor pointed out that there is a 30% chance of death within the first year of transplant! This is alarming for anyone of course for that reason and others I'm still not convinced that I'm proceeding yet. I know I have to be 100% convinced before I commit to it because there is no turning back!

Hi Peter yes I have spoke with the transplant coordinators I think they know me pretty well because I’m always ringing them with questions and they are very helpful obviously they can’t tell you everything though because they just don’t know and I’ve also spoke with a post transplant patient which again was helpful.

8

Hi everyone,

              In the past few months there has been some negative stories in the local media about the Hospital I'm having my treatment at. The Christie has a well respected reputation here in the North west and from what I can gather it's supposed to be one of the top Cancer Hospitals in Europe.

On the whole I think my treatment has been good but I have experienced a few incidents that have worried me! I’m no expert and I know that no hospital is perfect and of course you can’t always trust the media.The incidents have been basic errors and makes me wonder about the transplant and the complexity of the procedure and if basic errors have been made then how will it be when I’ve had the transplant and I’ve got to trust them with my life?

I may be over analysing things but this is one of the biggest decisions that most people will ever have to make and I will voice my concerns when needed.

9

Hi AMB

I can only speak from my own experience at The Christie and say that for me everything was positive. We were given lots of information pre transplant and the HTU staff were extremely helpful and kind.
It is a big thing and I can speak about it now 2 years on, my post transplant care, visits to clinic weekly, monthly and now for me 3 monthly, have been equally positive. For me any issues along the way have been dealt with really quickly including admissions for treatment.
My next appointment is next week and I actually look forward now to going, the staff all seem genuinely interested in my progress and they give you that reassurance that the Hotline is always available. I have met many other patients over the last 2 years or so and I can’t recall any that have had a grievance with the place.
I do think the new unit for transplants can only make the process for patients better.

I only live a couple of miles away from the hospital and I know other cancer patients and people that work there and I think any recent press reports are internal and management issues and don’t reflect on the patients and care they receive from the medical staff.

I hope your treatment continues to go well. Good luck for the 23rd if you start your treatment.

Peter

10

Dear AMB. Good luck for the 23rd. Hope all goes well.

11

Thanks for the good luck wishes. I’m in the new unit and it’s very nice I have stayed in worse hotel rooms although not everything is up and running. I’ve had the Chemotherapy.(Cyclophosphamide/Fludarabine)

Next comes the TBI total body irradiation for 3 days which I’m still rather anxious about and then the new cells on Thursday. Anyway hoping for a smooth ride.

Cheers Andy

12

Hi Andy

Sounds like you doing okay at the moment so good luck with the TBI. Can’t help you with that I’m sorry, for my condition just had the chemo for 7 days pre transplant, and like you had the nausea. They will have a tablet for that and most other things.

Make the most of your air conditioned surroundings whilst we all suffer in the heatwave.

All the best for Thursday.

Peter

13

Hi AMB,

From what I’ve read here you must have had your transplant by now,
I was diagnosed in 2012 with AML and had 3 sessions of chemo (i too was on the trial) and after being in remission, April 2013 i was told that there were signs that I would relapse and a transplant was needed this time, so the hunt began to find me a donor unfortunately they couldn’t find a match, my second option was to harvest my own but after flag we discovered that it wasn’t possible either so my only option was a transplant using cord blood, I was lucky enough that Anthony Nolan managed to find me 2 cords and I had my transplant in Nov 2013. The transplant itself was very smooth and I’ve only had a very minor case of GVHD. Am still the same person after the transplant but a bit fragile. Getting back to normal, well the new normal! that will happen sooner than you think…

I hope you are ok, it’s not an easy ride and it can be very frustrating most of the time, the trick for me was my sense of humour, thinking positive helps too. If you need to chat or anything let me know, am more than happy to give you my email address.

Good Luck mate

14

Hi Andy,

Hopefully you’ve had your new cells and things are taking shape now. Hopefully your counts are now improving and the nausea has gone.

Take care during your recovery an please keep us posted as things progress, as and when you feel up to it. Most of us here have experienced what you are now going through so we will all have a sympathetic ear if you need to share your thoughts.

Good luck and good health.

Steve