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Advice about stem cell transplant
Hi everyone.
Over 6 weeks ago my partner Matthew was diagnosed with acute myeloid leukaemia at the age of 31. At first I thought this would've affected young children and elderly but it took us all by surprise and shock. My partner was physically fit, never drank, smoked or took drugs. He's been receiving treatment from RDH and had his first round of chemo. He has a long way to go for recovery but he's been referred for a stem cell transplant. I just want to know how this works and how this will affect my partner after the transplant. Right now he's already desperate to come home as he's never liked being in the same place for a long time as he preferred to keep himself occupied. It just breaks my heart seeing him so withdrawn as he used to be outgoing and a bright and funny person.
If anyone can offer advice it would be very appreciated. Thank you so much
Over 6 weeks ago my partner Matthew was diagnosed with acute myeloid leukaemia at the age of 31. At first I thought this would've affected young children and elderly but it took us all by surprise and shock. My partner was physically fit, never drank, smoked or took drugs. He's been receiving treatment from RDH and had his first round of chemo. He has a long way to go for recovery but he's been referred for a stem cell transplant. I just want to know how this works and how this will affect my partner after the transplant. Right now he's already desperate to come home as he's never liked being in the same place for a long time as he preferred to keep himself occupied. It just breaks my heart seeing him so withdrawn as he used to be outgoing and a bright and funny person.
If anyone can offer advice it would be very appreciated. Thank you so much
Comments
As for personal experience, I'll leave it to the experts on this forum to get in touch with you to tell you how it really is for someone receiving a transplant.
Best Wishes
C
First of all I just wanted to say I am really sorry for you and your partner that you had to receive this news. I was 36 when I was diagnosed so not such a dissimilar age and I too was pretty fit, didn't pick up many illnesses and thought I was in the prime of my life.
As Chiara has already covered, the best thing to do is read as much about the transplant process as you can - there is loads of great material out there - my only advice is choose the reputable providers - a general Google search can sometimes be helpful but it can also lead you down some paths which are not helpful (and don't fit your specific circumstances anyway)
And that leads me to the last thing I would say, which is ultimately that everyone's experience with a transplant is unique to them. I really don't think there is any way to guarrantee what will happen and how your partner will find it. However, there are loads of people on this forum who are at various stages of the process and would very happily offer their support through sharing their own experiences (myself included). I have had both an auto and an allo transplant in the last 12 months so would be very happy to answer any specific questions if that would be helpful?
Hope this is of some use.
Best wishes to you and your partner.
Greg
I echo what Chiara and Greg have already said and am sorry to hear about your husbands diagnosis. I remember being devastated when I was told and it took some time to get over the shock. I was admitted to hospital within a few days of being diagnosed and I can honestly say I feared the worst when I went into hospital. I'm also not a good one for being stuck in hospital and found the monotony almost unbearable, but unfortunately it's a necessary evil and you do adjust to it.
It's important for him to try and keep his spirits up and if anything focus on the end result which is to get better and make a full recovery. There is a growing number of us on this forum who are either in the process of recovery or like me have gone full circle and have returned to normal life.Hopefully your husband can take some reassurance from that and he must believe that he will also make it through the process. Staying positive and focusing on an objective when he gets better will help him get through the challenging times, He is young and has lots to look forward to when he is better so having something to concentrate on like a special holiday or a project to undertake will help him focus on achieving it.
When a friend of mine visited me early in my treatment just after he'd climbed Snowdon, I made that my goal to complete after my transplant. I did it only 9 months after my transplant and whilst it was incredibly different due to weak legs and breathless lungs it was the proudest day of my life and I felt like I was back in the real world. Planning the walk also helped take my mind off the treatment as I was able to think about the arrangements and keep in touch with the 25 people that came with me.
Greggs statement that everyone's experience is unique is spot on. We are all different and what happens for one person doesn't necessarily mean it will happen for everyone else. The resources that Chiara has mentioned will help understand the process of the transplant and we will support you and your husband through this forum as the best advice on how to cope comes from patients that have or or are going through the process. Dr Google isn't the best place to go for advice as there will be so many horror stories it will do more harm than good.
If your husband has access to the internet in hospital please encourage him to join the forum himself as he will hopefully find it helpful and reading the threads may help him understand what he is going through.
In the meantime I wish you both the best and hope you will keep in touch to let us know how your husband is getting along.
Regards,
Steve
Thank you so much for the kind words it's given us both more determination to help Matthew get better.
Chiara the link you've attached to the comments has helped to put my mind at ease. Now we can prepare ourselves for what will happen. We'll also be aware of the time scale that Matt will have to recover from this but we will take each day as it comes.
Steve coincidently I'll be climbing snowdon with a few others this weekend to raise money for ANTHONY NOLAN. Matt has chosen this organisation as they have unsung heroes who go out of their depth to save many lives. Words cannot describe how exciting this will be.
Greg (and Steve!) I'm glad you've made a recovery after what you went through. Right now Matt is going through the process of being institutionalised but he knows it's the only way to prevent himself to become prone to infection. But saying that, he's had 3 teeth removed due to cavities which he's not best pleased about. But we're hoping on Wednesday/Thursday he may be discharged to have a break from hospital. That will all depend on his bone marrow biopsy. I'm sure you both went through the same process too before the transplant? Plus how long did it take you both to find a match?
Thank you again for your kind responses and I will keep you informed with MATTMAN's process.
Aimee x x
That's great news that Matthew is hopefully being allowed home for a break, it does help a lot. I remember the first time I came home and got a lift from a friend that came to visit. It was late at night and my twin boys who were 10 at the time didn't know I was coming home, they answered the door with their mum and both leapt into my arms when they saw me. Many tears were shed that night I can tell you!
I was due to climb Snowdon again a couple of weeks ago but we postponed it due to a bad weather forecast. I'm trying to rearrange it for the 29th of this month failing which it will probably be postponed until the Spring. I'm raising funds for Anthony Nolan and for Bloodwise.
In terms of locating a donor, I guess this varies from individual to individual and as we see from the number of high profile campaigns sometimes it takes a while to find the right donor. Personally I had 3 months of chemotherapy leading up to my transplant and a donor was located within that time to have the transplant at the start of the 4th month of treatment.
The best thing you can do in the meantime is to encourage people by whatever means to join the register either through Anthony Nolan or through DKMS. Even if they aren't a match for Matthew they may be for someone else who also needs a transplant.
If you have any questions as Matthew progresses through his treatment this is the best place to get the answers. Things you might think are a problem or a complication are often just a normal part of the treatment and you will get reassurances from other patients that will hopefully put your mind at ease.
All the best,
Steve
Thanks for your post, I am glad mine was of some use to you and Matt.
I really think everyone's stories are unique to them, but in case it is helpful, here is a bit of background on me. I was admitted to hospital with a bad blood clot which stretched all the way up my left leg and almost to my lungs (which could have been very bad). It came on out of the blue over one weekend and so my brain was in a complete blur. I stayed in hospital for about two weeks while they did a myriad of tests on me, trying to find out what was wrong with me. I remember being introduced to the "cancer of unknown origin" team but I don't think mentally I was computing the significance of what was happening to me. Eventually, a bone marrow biopsy confirmed a diagnosis of myeloma and I was discharged the next day. Barring a short two day return for an infection, I stayed out of hospital for the whole of my chemotherapy (which lasted about 6 months), which I tolerated very well.
I don't know the specifics of Matt's illness and I think my background is a bit unusual in the transplant world which is why I am wary of sharing it as it is probably not helpful at all, but here goes anyway....!
Auto SCT is the standard line of therapy for myeloma but allo SCT is not as there is not enough evidence to prove that it is beneficial. Myeloma is basically incurable with an average life expectancy of 5 years but given my very unusually low age to get myeloma (most people are 60+), they ran tests on my brother and sister to see if they were a match and my brother was, so I didn't go through all the worry of waiting for a match. I don't think I would have had an allo transplant if my brother was not a match.
So I think my road and mindset when getting to the allo transplant was a little different to most on this forum. I was basically told that they were pretty confident they could get me 5 years good quality of life without an allo transplant but the allo MIGHT get me long enough that I ultimately died of something else other than myeloma. At 36 years of age with 3 young children, 5 years didn't sound that appealing so I went for it.
Sorry for the long winded background, as you can see there is lots of variety of backgrounds for people coming to auto and allo transplants and how therefore everyone's specific circumstances are unique to them.
For example, I think my background left me with a negative psychological relationship with my transplant when things started to go off the rails post-transplant. I felt incredibly well going into the transplant and so when I got bad acute GvHD I went through an awful time of regretting what I had done and basically concluding that I had just made the worst mistake of my life. But I think that would be an unusual position for most on here because i think transplants are often the only option to offer a cure for some very serious situations.
And now that I am 8 months post-transplant, I have recovered from acute gvhd and whilst I am still far from being back to normal just yet, I realise that even when you think there is nowhere left to go, you can still pull through and get to the other side - I look back now and see the progress I have made, progress which I was convinced was not possible at the time, and that really gives me strength for the next challenge. And I have also learnt that regrets don't work either (as I think Robbie Williams said in a song once!).
The last thing I wanted to mention in reply to your post was the institutionalised point you made. When I had bad acute gvhd, I spent 7 weeks in hospital and I found that length of time hard to cope with. The hospital became at the same time the place I hated most in the world and the only place that was keeping me alive. It took me a long time when I was discharged to get back to some level of normality. What I found very helpful was to speak with a psychologist (I still do from time to time). And I think patience is another top tip. I am not the patient type, but I think this journey does need it. And at the end of the day, there are some amazing success stories out there to cling on to which really provide inspiration.
But I am not sure about climbing Snowdon just yet........!
All the very best, Greg
We've had a long six-seven weeks in hospital. But I have to let you all know that we had Matt's bone marrow biopsy results back last night and they've made the disicion to discharge him for a few days as the percentage of the leukaemic cells dropped from 80% to just 1%. Words cannot describe how really proud we are of our Matthew. He's been through quite a few infections in eyes and mouth and unfortunately had to lose a few teeth along the way but he is as close to remmision as he can be.
Greg, that was very fortunate your brother was a match for you, I'm so glad. I wish I could say the same for one of matts brothers to be a match too but tests proved otherwise. What Matt has is two types of leukaemic cells. It's a rarity for anyone to be diagnosed with something like this. I'm not certain what they are but I know one of them is acute myeloid but not sure what the other one is. I shall speak to his specialist about it when I get chance. BUT it still doesn't mean there isn't a match for Matt out there. We will wait as long as necessary.
Right now Matt will have that much needed bit of respite and will spend some time with his dogs (Heidi and Oscar). He has such a special bond with them both and helped him through bad patches of his life. I know it may seem like four days to be home, but it's rewarding enough just to be outside for a change.
Afterwards he'll begin a new course of chemo but I believe that it will be a strong course this time. He's battled through the first course through thick and thin but we'll see how he does with the next one. He's got a course of medication to take but I believe it is expected.
We've done so well to get where we are now couldn't be more proud of my MATTMAN.
Will keep everyone up to date soon
Aimee x x
I am just so pleased for you and Matt. Whilst I don't understand the specifics of your situation, I understand how tough it can get and so it is great to read about such great progress as this. Best wishes to you both and I really hope you enjoy the next few days out of the hospital and in a more relaxing environment!
Greg
This should be a boost to your spirits and help continue the fight through the rest of the treatment. Make the most of him being at home and prepare him for going back to face the rest of his journey with renewed strength.
All the best,
Steve
Hope all is well
What a lovely seven days we've had with Matthew. Plus climbing Snowdon was a piece of cake(!) He's been suffering from headaches but doctors think it may be the injection he had in his back, like a preventative(?) When he's lying down the headaches go but I just hope it's nothing to worry about.
On Monday we had an appointment with Nottingham City Hospital where Matt will have his stem cell transplant. It turns out that he has two types of leukaemia which is myeloid and lymphoma, so this is the only way to prevent it coming back. Radiotherapy may be on the cards unfortunately, but I guess this is another precaution to ensure the cancer cells are completely destroyed. There are three potential matches, two of which are Welsh, and another is British. I have my fingers and toes crossed if one of them is a match.
He's being readmitted to RDH today to begin his second rouund of chemo. Although it's for five days of strong chemo (flagida?), it could take up to five or six weeks to recover. I only hope the temperatures and infections he picked up on the first round will be less severe and more under control. He was discharged after 7 weeks in hospital with temperatures, fevers, infections in the mouth and eyes. I wondered if he had the infections before admission without realising it?
He seems to be taking everything in his stride but I can sense fear. We've reassured him that we will always be with him every step of the way and that he's not alone in this. It's been emotionally draining for us but this has definitely made us more inseparable and strong together.
I'll keep everyone posted on MATTMAN's progress. Here we go again....
Aimee x x
My name is Hayley and I am the nurse specialist in the Anthony Nolan patient experience team. I try not to get too involved in this forum as I think it works really well with patients and families giving each other support from their own experiences but I just wanted to add some reassurance.
Headaches after receiving injections in to your spine is very normal, the best way to try and manage it is to try and stay laying flat for as long as possible on the day of the initial injection, although even then it can take a few days for the headaches to settle.
Although I can't guarantee this sometimes the second round of chemo can be a little bit easier. The reasons for this are he doesn't have the same level of disease on board like he did the first time around, he probably did have infections when he was first diagnosed so started off in a slightly worse condition and you are both more prepared of what is going to happen when he has the chemo. FLAG/IDA is a strong but effective chemo regimen so he should expect to get an infection and some of the side effects but he might get over this a bit quicker this time around. Like I said this is not guaranteed but either way you both know you have the strength to get through it.
All the information that you receive from the medical team can be overwhelming so my advice is to try not to think to much about what is going to happen after this round if chemo, take one step at a time and stay strong for each other, you sound like an amazing couple. Keep us updated with his progress.
Best wishes
Hayley