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Preparations? Questions?
Hi,
I'm finally back. I've been doing the Brentuximab thing for several months and a couple of weeks ago heard the wonderful words 'complete remission.'
So the move to allo is now progressing a pace. I met with my new transplant team on Monday, and my Professor told me there is a CMV compatible 9/10 match. I understand this in terms of CMV & alleles but not in terms of success or any consequences of a 9/10. But the good news is that there is a match.
Provisional date to start conditioning chemo is week commencing 19 Sept. When I heard the date it felt like next week and not a month away. Shock & fear because it became real. The potential donor still has to be contacted, do all their pre-checks, actually agree and then donate. Fingers crossed it goes smooth.
So questions:
Does anyone have any practical tips or pointers on how to prepare for & get through allo? I don't have family so need to order things as much as I can to manage my way through.
The Professor seemed relaxed about the 9/10 so I'm assuming that it's a good match. Is there anything I need to know?
Are there any key questions I need to be asking my team? I've done all of the normal website reading (Anthony Nolan, Lymphoma Association, etc) but I'm new to this and don't necessarily know what I need to know. Or know what I need to ask.
Thank you for your help.
Dee
I'm finally back. I've been doing the Brentuximab thing for several months and a couple of weeks ago heard the wonderful words 'complete remission.'
So the move to allo is now progressing a pace. I met with my new transplant team on Monday, and my Professor told me there is a CMV compatible 9/10 match. I understand this in terms of CMV & alleles but not in terms of success or any consequences of a 9/10. But the good news is that there is a match.
Provisional date to start conditioning chemo is week commencing 19 Sept. When I heard the date it felt like next week and not a month away. Shock & fear because it became real. The potential donor still has to be contacted, do all their pre-checks, actually agree and then donate. Fingers crossed it goes smooth.
So questions:
Does anyone have any practical tips or pointers on how to prepare for & get through allo? I don't have family so need to order things as much as I can to manage my way through.
The Professor seemed relaxed about the 9/10 so I'm assuming that it's a good match. Is there anything I need to know?
Are there any key questions I need to be asking my team? I've done all of the normal website reading (Anthony Nolan, Lymphoma Association, etc) but I'm new to this and don't necessarily know what I need to know. Or know what I need to ask.
Thank you for your help.
Dee
Best Answers
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Hi Dee
Good to hear from you, I am glad the Brentuximab has achieved remission for you and you are now in a good place to go ahead with the transplant. Understandably this is a bit daunting now that it is real but this is what you and your transplant team have been working towards. Its great that you are already using this forum, the patients on here will be a great source of support and information to you whilst you go through the transplant and when you recover.
In terms of your donor a 9/10 is a perfectly acceptable donor and the CMV match is very important in terms of the likelihood of you developing CMV. You are at slightly higher risk of developing graft versus host disease with a 9/10 but as you might already know the advantage GvH is that you will then have graft versus lymphoma effect. If you have a 10/10 or 9/10 your team will always closely monitor you for signs of GvH and if it develops treat and manage accordingly.
For tips in to preparation I am sure the patients on here will be best placed to give that to you but we have made a podcast that you should find useful, it's called preparing for a bone marrow or stem cell transplant and you can access it via this link https://audioboom.com/boos/4694056-preparing-for-a-bone-marrow-or-stem-cell-transplant. It covers all areas of preparation from physical, social and psychological and the response from patients who have listened so far has been very positive. A good source of written information is the seven steps for pre transplant and the next seven steps for post transplant and you can find these at https://www.anthonynolan.org/patients-and-families/resources-and-information/download-or-order-information as well as The little guide for transplant patients.
This information should definitely help you prepare for the transplant. From my experience the best advice I can give you is to try and keep up your nutrition and to keep moving, if you become fatigued it will be easy to want to just sit and this is not good for you so try and keep walking, even small distances. Don't overwhelm yourself with information, try to focus on one stage at a time ie pre transplant, early post transplant, GvHD etc. as this will then seem more manageable. And finally don't put too much pressure on yourself to feel back to normal really quickly, the reality is that this will take at least 6 months so make sure you give yourself time and have support in place to help. Another good booklet is the supporting your friend through a bone marrow or stem cell transplant, you can get this on the same webpage as above and pass on to your family and friends.
I hope this has helped and you get some advice and tips from other forum members. Please keep us up to date with your progress.
Best Wishes
Hayley
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Hi Dee,
I had a sibling allograft back in May last year. In terms of preparation the 7 Steps as suggested by Hayley is a very good reference point. This will tell you just about all you need to know in terms of the medical side of transplant. I personally wouldn't read too much else than that - there is a whole host of information out there via the world wide web but it can be easy to panic yourself by reading some of the medical papers/articles.
From my own experience in terms of practical tips for preparation the essentials you will need are 1) some way to communicate with the outside world (laptop or tablet) 2) if you are going through this alone enough clothes to see you through potentially 4-5 weeks in hospital (maybe check if the hospital provides a laundry service or whether a friend can help you with this) 3) some favourite foods (for a neutropenic diet) as hospital food can get very repetitive and isn't great at the best of times (you should have a fridge in your room) 4) some reading material or DVDs to break the monotony (although you may find you are too tired to do much concentrating).
I fully endorse Hayley's comments about nutrition and exercise. The Churchill where I had my transplant were big advocates of this and actively encouraged you to get out of your room and have short walks around the ward. They also provided an exercise bike for my room and I brought a set of resistance bands in to hospital with me so that I could do some very gentle exercise for my upper body. I felt great throughout the transplant recovery and would go out for a walk around the grounds in the early morning before the sun got too strong and I carried this on once I got home. I found this to be a really important part of my recovery.
I would also say that you need to try and stay positive and focused throughout the process.
Good luck with the transplant and make sure you use the forum when you have questions. We are all very happy to try and help.
Rob. -
Hi Dee,
I had my transplant from an unrelated donor last October. What really strikes me looking back is that the health team have to outline everything that could go wrong, however once through the conditioning things get easier. There will be a few bumps but it is a great feeling to know the graft is in and doing its job. I have had some battles with infections and fatigue but have so far not had GVHD issues, and am now starting to feel quite good.
I think all the tips above are good. Breaking the process down into stages is definitely the way ahead. You might want to discuss post transplant practicalities now with the medical team and see if there are any resources they can help with as a contingency that might help either with transport to hospital, which is likely to be several times a week, or practically. I needed a lot of help at home for several months after treatment, simple things like cooking, laundry were beyond me. Others were able to do a bit more, everyone is obviously different. Family helped me, but it is amazing how helpful friends and even neighbours can be when it comes to it.
The transplant teams are really excellent, it is not a walk in the park, but is not as scary as I was thinking this time last year. Wishing you the best of luck! Brett
Answers
I'm afraid it's too late on the Dr Google front. I visited a few months back and, well, YIKES! But I've moved from shock to acceptance. What I didn't want is to turn up to an appointment, meet my new transplant consultant for the first time, and have that scary discussion someone I just met. I didn't want to be exposed to those facts and figures for the first time at that meeting. I thought it would be too traumatic for me. So the Prof, known to be thorough and up front in these situations, did give me all the frightening facts about what might happen, and all those stats, but he merely confirmed what I already knew. It worked for me but I wouldn't recommend the approach for everyone.
Thank you for the helpful tips. I hadn't thought about resistance band - I'll get one. I'll take some bits of food in but I remember not being very hungry with autograph and ended up throwing most if it away. I have to limit the packing to what I can manage to move solo between the nearby 'ambulatory care' hotel and hospital during the first 7- 8 days. I can always get friend to bring the the correct food when they visit. And thanks for the tip on clothing. I feel often feel left out in the practical advice because it so frequently focuses on the support of carers and what they can do to help manage. But I don't have one and I've yet to see any specific advice on what to do when you have to manage alone - which is my circumstance. I don't own 4-5 weeks of clothing but I'll pack as much as I can manage and get friends to play laundresses.
Thanks again for your help.
Dee
There's not much I can add to the great advice that others have given above but I guess I would echo some of them in particular.
Like Hayley and Rob, nutrition and exercise to me are one of the biggest things that will help your recovery. I was lazy and didn't motivate myself to exercise and I struggled to eat so was poorly nourished. I'm sure this prolonged my recovery and it was only when I addressed both that things started to speed up. So if you can do a bit of exercise each day, no matter how small, to keep your muscles moving and some strength in them, together with taking whatever food you can tolerate, will help maintain your strength through the early days enabling the recovery afterwards to kick in sooner.
The easy part is whilst you are in hospital as there are medical staff around you to look after you and attend to your needs, but when you go home you need a similar support network to help you at home as you must not expect to get home and be able to do everything yourself. Some assistance for household chores, cooking, cleaning, laundry, etc.
As Brett suggests, the hospital may be able to help with travel to clinic for checkups, which will be frequent initially, but having someone along for moral support will also help you.
I hope everything goes smoothly in the lead up to your transplant and please stay in touch and let us know how you're getting on.
All the best,
Steve