Refractory hodgkins tandem transplant?

Pre-transplant
1

Hi there

I have just joined and hope someone may pop along who has experience with refractory HL.
I HAD A MEETING this week and ( in a nutshell) they said my best bet at a long term survival was a stem cell followed 90 days later by a donor stem cell!! Crazy. One is bad enough.
Being 34 and a mum to a 2.5 yr old I obviously want to beat this disease once and for all but can not find an awful lot of info on these so called tandem transplants.
Whether you do , or not, I would still love to speak to anyone in a similar refractory position?

Was diagnosed a year ago and had avbd, gem ox and Brent. All worked but scans continue to show little spots light up elsewhere.
Thank you
X

2

Hi there and welcome to the forum.

I’m not sure we’ve had anyone so far that I’ve heard of having a ‘tandem’ transplant, though we do have people who’ve had multiple transplants and stem cell top-ups after their initial transplant. There may be others who’ve had Refractory HL though so hopefully someone may be able to give you some insight from the patient perspective

Is the first transplant to have your own cells collected, processed and returned, followed by stem cells from a donor after 90 days? Is there any indication of any treatment in the intervening period? It does sound strange to me as I would have thought the second transplant would be like ‘overwriting’ the first but then I’m a transplant patient rather than a medical professional so maybe there’s a reason for it.

Hopefully somebody can give you some help with the various conditions you have mentioned.

All the best,

Steve

3

Hello, my name is Hayley and I am the nurse specialist in the patient experience team at Anthony Nolan. Thank you for posting on the forum, I hope there will be other patients that can give you some advice and share their experience of tandem transplants.

It sounds like you have had a tough year especially with having a young child and I am sorry about that. Tandem transplants tend to be given in different ways for different diseases, so for example patients with multiple myeloma can receive 2 back to back autografts (using your own stem cells) and Germ cell tumours can sometimes have 3 back to back autografts. In Hodgkin’s Lymphoma research has shown that patients with refractory disease have a better response and overall survival when treated with an autograft followed by an allograft.

Disease statues before going in to an allograft is very important, if you have disease before you have the transplant this can have a negative impact on your response to the treatment. Therefore its important that your disease is reduced as much as possible and the autograft is the treatment used to eradicate any remaining disease. Then when you are in remission or have a lower disease burden the allograft can be used to consolidate this response and give you the long term remission.

An autograft involves collecting your own stem cells and then a few weeks later being admitted to have high dose chemotherapy and stem cell return. The high dose chemo will eradicate the remaining disease and wipe out your bone marrow and your stem cells are used to rescue your bone marrow. Your recovery following this can take 2-3 months with the main side effects being risk of infection, nausea, loss of appetite, fatigue and alopecia. You will not feel terrible for 2-3 months, most patients begin to feel better after a month with fatigue and appetite taking the longest to return to normal. Your inpatient stay should only be approx. 3 weeks and then you can be at home recovering with regular appointments with your transplant team. By the time the allograft comes around you should have had time to regain your strength and spend quality time with your family.

The allograft involves finding you a donor and that process is probably already going on right now. The admission usually involves 1 week of chemo followed by the infusion of the stem cells, this is similar in practice to receiving a pool of platelets and is a simple procedure. You should expect to be an inpatient for about 3-4 weeks and initially the side effects are not that dissimilar to the autograft. The 2 main differences are that it will take you longer then 3 months to recover, more likely 6 months to 1 year and there is the added side effect of graft versus host disease (GvHD). This is when the new stem cells (graft) notice that the host (you) as foreign and causes a reaction and it can affect your skin, gut and liver. This is regarded as a good sign as it means your new immune system is strong and is fighting, GvHD can also have a good effect in that it can cause graft versus lymphoma effect which means that it will fight against your disease. You might have seen lots of posts on here regarding GvHD and I think the main issue is that it is well controlled so that it does not impact your quality of life. Again you should be able to spend most of the time recovering out of hospital although you can sometimes be readmitted at some point with an infection but you will be regularly followed up at the transplant centre.

I know this must sound daunting and scary, like you have said one transplant can be difficult and I am sure the thought of two is a bit overwhelming but if you and the transplant team do feel this is your best treatment option, I am sure you have the strength to get through it, you want to beat this once and for all. Research is supporting this treatment for refractory HL and there is no evidence that you will have more side effects because you are having 2 transplants closer together or that it will take you longer to recover than if you just had the allograft. Every one is different in how they cope but if you are finding it all a bit much to think about maybe try and take it one step at a time and focus on keeping yourself fit and strong for the autograft and then think more about the allograft once that gets nearer. We have a podcast that you might find useful on the Anthony Nolan family and friends Facebook page about preparing for transplant https://www.facebook.com/anthonynolanpatients/?fref=nf there is advice about what to expect and what you can do to prepare from a practical and emotional perspective plus lots of feedback from patients who have been through it. You can also look at our patient information and I would recommend The seven steps as a good starting point http://leukaemialymphomaresearch.org.uk/sites/default/files/seven\_steps\_march\_2012.pdf

There is also lots of Essential guides and information about post transplant recovery.

I hope this has helped and please keep in touch with your progress.

Best wishes
Hayley

4

Hi Steve and Hayley, firstly thank you very much for your replies it means s lot to me!
Steve, Hayley has covered it very well in terms of the desired tandem ( as far as I am aware; it was a fairly brief idea thrown at me on Monday).
Although I have been a patient at a private hospital on the south coast I have not had a haemo nurse. I have had a breast cancer specialist and her trainee, treat me. I love them but their knowledge is not there. I can ask my consultant anything but it isn’t the same.

I haven’t had any encouragement along the way. All I have had is the forums and I am desperate to have a more relevant personal guidance, if you see what I mean?

I know I am in a dire position now but a few words of encouragement is all I need and I feel so sad I’ve not had them. I might change hospital where I have been told there is a dedicated team, but it does mean longer travel for my partner or mum to help me with xx

Thanks again.

5

Hi Elmambo,

I hope my post is helpful as I think I did a tandem transplant, although my doctors never called it that. I had an autologous SCT in October 2015, followed by an allogeneic SCT 3 months later (early Feb this year). I have myeloma and the reason for doing it this way was to get rid of as much of the myeloma cells as possible by doing the auto first, before giving me the donor’s cells to hopefully knock it on the head for good.

From speaking to various people, I think everyone’s experience of transplants is ultimately unique so all I can do is share mine. I found the transplants themselves actually really straightforward. I was only in hospital for 12 days for both procedures. I think I was very lucky as I didn’t pick up any infections on either procedure - my doctors said 90% of people will pick up something during the process and that is probably why most people are in hospital for the transplant for up to a month. I was back to work within 6 weeks of the auto-transplant as I felt really well.

On the flip side, I got my share of bad luck when it comes to GVHD after the allo. Around Day 50 post-transplant, I developed acute skin, liver and gut GVHD. The gut was the worst and I needed to spend 7 weeks in hospital whilst they tried to get it under control. I found this very tough as I just don’t think I had probably prepared myself for what GVHD can do. My doctors say I got the rough end of the rope, and a lot of people will not get any acute GVHD. I am now entering a chronic GVHD phase but it is early days so my experience of this is limited, although there are lots of people in this community who have experience in this area.

I don’t think there is any way to dress up the fact that the allo in particular is scary but because I have 3 young kids and as myeloma is basically incurable, I decided that the allo was my best shot to try and help me see them reach adulthood. It has been a rough road so far, but what I would say is that the consultants performing the procedures are highly skilled people and these type of procedures are being done more and more, so knowledge and best practice is improving all the time. I have also found that there are loads of amazing people out there in the transplant community who will always be there to share experiences, offer support/guidance or just be there to listen, so you will never be alone in whatever you are going through.

I wish you all the very best of luck on your path and if I can help in any way, I will very gladly do so.

Greg

6

Hi Elmambo

It is a concern that you do not have a dedicated transplant or even haem CNS, going forward it would be very beneficial to have a nurse as a point of contact and to give you support. You should have a transplant co-ordinator that is organising the donor search and transplants, at some hospitals they are the main point of contact for you. Maybe speak with your consultant and explain your concerns and then you can discuss your options of the best place to receive the treatment. Patients often have to travel to the transplant centre because of the specialist nature of treatment and yes this can cause added stress when you are recovering, feeling fatigued and have a young family to think about. However, this then has to be balanced with having treatment at a centre that is equipped to support you. We sometimes share the care so your follow up is shared between the 2 hospitals which means you do not always have to make the long journey but still have the support of the transplant unit if you need them, maybe ask if this is an option.

Now is the time to find all this out and then you can plan what you are going to do about child care, transport, finance and who is going to support you at home. Trying to think about this after the transplant when you are recovering isn’t always as easy.

You can always come to this forum or contact us at Anthony Nolan for support or if you have any questions. Greg and Steve have already shown how willing everyone is to provide you with words of encouragement. Yes the prospect of 2 transplants is scary, yes the recovery will be tough and most definitely yes you are strong enough to get through it, don’t forget that.

Best wishes
Hayley

7

Hi Elmambo,

I share Hayleys concern that you don’t have a specialist Haematology nurse looking after you, given the nature of your illness. When I was first diagnosed with Leukaemia in 2012 I told my doctors that I was in BUPA and that if necessary I could go private. Their advice to me was that the care I needed was best given by the NHS as they had the resources to deal with it and that having Private Healthcare wouldn’t make any difference to the speed of efficacy of the treatment. It sounds like in your case the resources you need aren’t available in the correct form and that must give rise to concern.

I think if I was in your position I would speak to my consultant and share your concerns. You do need to be looked after by a specialist team, even if that means some travelling. I was treated in a hospital 30 miles away from home and whilst I had concerns about the effect on my wife and children at first it actually worked out well since it meant that I only saw them on a weekend and they could carry on as near to normal with their daily routine.

If necessary contact the Anthony Nolan team directly and they may be able to help with further advice?

All the best,

Steve

8

Hello everyone

Thank you again, so much for words of advice. I have n board and have changed hospitals! I am fairly lucky as the other option is only another 15 minutes added to the journey so not bad at all. The transplant will be a 50 mile journey however, in London but I needed to change my local hospital as it was getting ridiculous. For example I couldn’t pick up a prescription the other day as my nurse ( trainee ) was on holiday!
Looking forward now, not back.

Greg, thanks so much for your personal account. The GvHD does sound quite simply, horrific. I always get a bit confused as to which is more severe… Chronic or acute? Sorry for my ignorance. How are you getting on, any updates since you posted?

Before I even worry about the transplant, my consultants can’t even decide on the intermediary chemo before! I am going for a 3 rd opinion next week… At the Christie. I shall let you all know. I’m not expecting miracles but I would like to know what they think having probably seen quite a lot of people ‘like me’.

I can’t find many refractory HL peeps on here but there are a few of us on the Macmillan site I chat to and that helps a lot.

Thanks again peeps! X
Elena

9

Hi Elena, don’t worry about the gvhd - I had it pretty bad but it is different for everyone. At the moment, we are still not sure if my recent problems are chronic gvhd or not because my bloods came back showing I have adenovirus which might be causing the problems. It is just a wait and see and fingers crossed situation at the moment!

10

Hi Elmambo,

I am/was a HL refractory patient but thankfully managed remission in March of this year.

I can’t help you with information regarding tandem transplants but I can talk at length regarding having refractory disease and also, donor permitting, will be going in for a Allograft next week in London and so I can share that experience with you should you wish it.

I had a repeat PET scan today to ensure I am still in remission before my transplant next week. As Hayley said, disease status before an Allo is really important and so I would guess sending you for the Auto first would be a means of getting you to that stage.

Sometimes (or maybe 99.99% of the time) the path the specialist consultants set out for you can be very challenging and scary. I found it very difficult to get my head around the idea of transplants, I just wanted to be left alone to enjoy my remission! But I trust the team looking after me in london completely and know what they are advising comes from years of experience and research and trials etc.

I hope the 3rd opinion is a good, solid one that gives you a definite direction to head in and that your chemo gets sorted. It’s understandably frustrating when things are up in the air.

It’s a 60 mile round trip for me to go to the hospital in London but I am happier now that they alone are looking after me. When my local hospital was also involved it got very frustrating and I spent most of my time on the phone chasing things up.

If you are on Facebook there is a Hodgkins Disease Refractory and Relapsed Group that I think you will find very informative and supportive. I cannot guarantee it but I am hopeful you can find someone there who can help with information on tandem transplants.

All the best to you, I am sure that no matter what you will get through this

11

I’m keeping them crossed for you Greg! I really am. I had hideous trouble with my ‘insides’ when I had 3 months of platinum chemo and I was admitted after every treatment, for 5 days at least. I felt so ill and nothing was right!
if I have one more bad pet scan or bad news not sure I can take it! I have a third opinion next week as to the tandem transplant. I don’t care what they do to me as long as it is the best treatment for me now as they’ve told me it’s my last hope…

Sorry none of the above is meant as a flippant remark toward your condition! Hope it doesn’t read that way.

I’m just at the point where I need to know I have some form of future. So scared. X

12

Did any of you manage to go away before transplant? I am desperate for a break somewhere warm would be nice but I don’t want to be paranoid whilst away of becoming ill or similar as that wouldn’t be very relaxing! X

13

Hi Elmambo, don’t worry, your comment didn’t come across as flippant at all. I don’t know your disease and my situation going into the tandem auto/allo was different to yours, but I empathise with the general panic / worry / stress about cancer generally and its treatments, and specifically transplants. I had a mental breakdown when I was in hospital when my acute gut GVHD was at its worst (I read Google, matched my symptoms against what was on there and decided I was going to die). When my main consultant said “fingers crossed this works” when the usual treatment failed that pushed me over the edge - it was truly horrible and I felt like I literally lost my mind (eg, it didn’t feel like me inside my head which is the only way I can describe it and I started having seriously dark thoughts) - if you ever get to that stage with your worries/fears, please please seek some professional help - I have been seeing a psychologist every week for the past couple of months which has really helped me. Everyone’s path is different but in my experience, they can really unlock how every individual’s mind works and help them through whatever they need to move forward in the best way for them. It took time, but they really helped me with the insane fear I was feeling at that time.

As to holidays, I was feeling well before my auto so I might not be in the same situation as you, so I did a week in Cornwall and loads of day trips to treat myself. My allo was in early February so it wasn’t really the time of year for holidays - but I made sure I had a good Christmas - I also vividly remember having my favourite meal at home the night before I went into hospital because you’ll be on a restricted diet for a while so definitely treat yourself! My advice would be to ask your doctor. If you are thinking of going abroad and enjoy going abroad, definitely take the opportunity now if you can - my consultant told me that I can’t fly until at least 18 months post the transplant, so it might be a while before you get the chance again - and the allo will also mean you probably having to stay out of the sun anyway.

Best of luck with everything - let me know if I can help in any way.

14

Clareyfarey I am desperately sorry I thought I had replied to your kind message.
How are you as I imagine you have had your Allo now? I wish you well. I will also have mine in London… Kings? Due December now. The tandem is off the cards- just an Allo. Testing my sister right now to be a match? She is the female equivalent of mick Jagger so god knows if she would even pass the medical

I shall check in again later and reply properly to my other messages thank you everyone xx Elena