Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I'm going for my initial hour long appointment at the QE in Glasgow next Tuesday to meet Dr Parker. I know roughly the bare bones of this talk, the scary numbers like 20% of success in the first year, 30-50% chance of favourable outcomes overall, that after the first two years recurrence free from leukaemia the chances if living a long time jump to 80%, the risk of infection and bleeding, the high risk if menopause at 28, the risk to my lungs liver and heart, the shirt and long term side effects of the chemo and TBI etc. I've researched it and read it all up on here and I think I'm ready and I don't think there's anything they can surprise me with - although this journey so far has taught me to accept and expect surprises!
Is there anything I need to bring with me, and how long do I get to ask questions afterwards, does anyone remember their appointment and have questions they wished they'd asked? I have a list if questions to help make little personal milestones for myself like, when am I likely to be able to take my daughter swimming again, within the first six months/year/18 months? A friend bought me tickets for a concert in June which date wise is after my 100 days, is it worth keeping those tickets or selling them on, for example? At what point can I accept an invitation to have a glass of wine and a take away? At what point will I likely be able to restart exercise classes? Now for things like this I know they can't predict the future, I know they can't give me specific dates but what I'd like is rough time scales. Like "we don't recommend you drink within the first year" or "we usually see patients restart physical exercise at around the 6 month mark" you know just little path markers for myself to be like "oh wow I could start thinking about being able to do this again now".
Or am I unlikely to get answers to questions like that, and hear the usual "everyone is different" line?
Hi Kirsty Kirsty914 'The Talk'
First Dr P....... She is the top dog in the unit, she is very straight to the point and will be very clear about the very things that you have highlighted but you need to clearly understand that they have a duty of care to ensure you hear the worst case journey.......... a very very high percentage of folks will never go down the route she is talking about, yes variations of some of the issues.
She will take time to ensure you understand the technicalities and what a standard treatment is like and sorry but she will say that the process can be fatal as this is the truth, but that is why you are in a very special controlled environment and the team do know what they are doing...... just take a big breath at that point
YES you will get time to ask questions and you will get very clear answers and if you are not happy or do not feel that you have a clear answer ask her to unpack the reasoning behind what she is saying.
Your list is great - spot on, as these are the the things that you are looking towards once this is all over and these are the main targets for the future and these are the mind control mechanisms if and when the journey gets rough.
You will always hear me say that you can't control the medical side of things apart from doing the things the team say like, having shower every day, change of clothes every day and night, use the mouth washes EXACTLY as you have been told...... keep eating. The main thing that you can do is fight the 'battle between your ears' and the questions are the things that you will concentrate on during these battle times.
Your Transplant Coordinator should be in at the meeting, they are your new very best friend - and you should get shown round the SCT unit by the her/him...... my two, as I had a different one for each of my Allos - Debbie and Helen were amazing and they gave some more of the practical stuff during the trip round the facility. Make sure you get her/his contact details as you can contact at any time to ask the other questions that will come to mind.
Make sure that you find out the conditioning chemo they are going to use and get back to us with this information. We two threads that gives some good prep info. The first is a Checklist of things to have while in hospital and if you are having the chemo Malphalan.
My transplants were across at The Beatson so I have never seen the QE SCT unit but I know that Judith Mum2k will give you first hand info on that. The TBI will be done across in The Beatson so you will be put in a taxi for each trip and think a member of staff comes with you.... Judith?...... and I still can't get my head round being in a taxi when your immune system is slowly coming down!!!!
My team said TBI was being used to give my Lymphatic system and Bone Marrow a good blast. In my teams words "To deplete your Bone Marrow to allow physical space for engraftment of your new healthy donor marrow" the TBI effects actually last for a few years and this is why I did not have it before my second SCT.
I had 2 weeks TBI (Total Body Irradiation). The intel thought of the body mould was a mind game but actually the mould is very cleaver and is ready in 15 mins. I found the the hours of the setting up process to be my biggest challenge as I have Spinal Osteoarthritis so I had to have strong pain meds during the set up and for every treatment. The 10 treatments lasted about 30 mins each the actual Radiotherapy itself was ok and I even got myself 6 tattoos!!
The worst thing that we were told during our first 'Talk' was that I MUST not see our then to be born granddaughter number 2 for a few months after the SCT so that basically melted me.
Keep your questions coming ((hugs))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
your questions are spot on and show you’ve thought ahead beyond this scary time. As Mike says, I think they have to spell out the scary statistics as not everyone makes it through, BUT, and it is a big BUT, those who don’t make it through are often a lot sicker when they begin the process. That’s what our daughter’s team explained to me, anyway.
so I guess the message is to get as fit and well as you possibly can before this, (and put on a bit of weight if you can too, as you’ll surely lose some) and (this is not always in your control!) try to ensure nobody gives you even a tickle of a sore throat!
Big hugs xxx
moomy is spot on.
At the end of last year at of my clinics with Dr P she found out that I help out on this Forum and was willing to answer some questions so I did ask her for the % success rate for those entering SCT and coming out the other end of the tunnel and surviving :(
She started by saying that in my case my chances of survival past 30 months without a successful Allo SCT was 0% and that was back in December 2013.
She then said the national average SCT survival rate (2016/17) was at 90% with her unit being at 92% going on to long term remission.
She also said she did not have national figures - but for her SCT unit the average life expectancy for folks who did not go forward with a SCT was 3 years.
The 8% in her unit who did not survive were average age of 59 (I was 58 on my first Allo and 59 on my second) with all having at least one underlying health issue and that their pre SCT prognosis was very poor.
I then asked her, so why are the figures used during the 'talk' so different from the reality and she basically said that it was the only way of showing the worst case scenario and infect the figures used were based on the worst performing UK unit and she said who knows if we can keep our success rate as good as we are doing.
Yeah I'm aware the mortality risk talk is coming and I had heard from doctors and from the board here that a lot of previous health and age and fitness are to be taken in to consideration when looking at the stats. Good to know she's forward and honest as that's how I like my doctors to be. I'm close in age and circumstances to Judith's daughter Katy so I'd imagine that I will.also be getting the taxi with a nurse over to the beatson for the radiation. I don't know how they'll feel about me going home to a four, soon to be five year old though, that'll be interesting....Good to know your daughters team had said that mommy that sort of echoes what I'd thought already. I'm not tryingbto plan for my first three months because to me that is the stage where I should just focus on eating, bathing, sleeping and going to and from appointments. And not much else haha!
Good to know you get a tour of the facility too, I didn't realise that would be happening but that helps because if children are allowed to visit my parents will know where to take her to give her- and me - a break
This is very interesting to know, thank you!
HI again Kirsty,
Existing health conditions do play a big part in getting on the process and the ultimate success. They did have a very close look at my Asbestosis as I do have impaired lung capacity but they did see it as an acceptable risk based on my prognosis, but I did have to sign that permission off for them.
They had no problems in me seeing our then 2 year old granddaughter bot not the baby when I got home as long as she was keeping well but that is very difficult to control.
You need to put the visiting question on your list. Our granddaughter was 2 years old during my first SCT then she was 3+ years old during my second SCT and was not allowed in to see me :(....... but I did see slightly older children in some of the other rooms (made me very jealous) so it would all be about where they are in their inoculations and their general health. But this more to do with the other folks in the unit who most likely will be in a worse health condition that you will be.
Hi Kirsty and Mike,
katy has the talk as well but said it’s not as scary as she thought.
She was admitted a week prior to her transplant, had 2 days chemotherapy and then 2 days off before the TBI- yes you will go to the Beatson with a nurse, Katy had 2 sessions a day for 5 days but yours might be different, Katy was also allowed to leave the unit in the first week so we could bring Emilia up to the hospital but once she had a few sessions of TBI she wasn’t allowed to see her. Visitors are allowed but they said to restrict to people you would normally see, not great uncle joe suddenly popping out of the woodwork!
The staff on the unit at QE are excellent so any advice they give you- take it as they were spot on about times and how long things would take- Katy got Mucositis and couldn’t eat for a week but they were feeding her through the Hickman is line. She had etopiside but you might get different chemo
As soon as Katy’s counts came up on day 11 she started to feel better, and when they rose above 1 she was allowed to see Emilia in the family room- so it was only really about 2 weeks that she couldn’t see her and to be honest she was out of it for about a week, she says now she can’t really remember that week - morphine fuelled!
But the recovery is amazing it was like night and day from the Saturday when she was really really unwell, then went in about 3 days later and she was like a different person so it does get better very quickly and as you say you’re similar age and circumstances to Katy so that will all go in your favour.
anything else you want to know just ask away or from your mums point as your main person who will be around you I think?
Hi all the best for you as you start your preparations to ....beat this!!!
Husb had the dreaded SCT chat. He asked his consultant if he thought the SCT would be successful the prof answer was a very confident and slightly bemused "Why on earth wouldn't you?" (ie he was filled with expertise and so confident). they HAVE to give you the scary stats too of course but theres so. many good results too.
PS HUsb ended up NOT needing SCT - YAY - and is currently in full remission from chemo alone.
*Learning God is in control and every day holds the chance of another miracle.*
The funny thing is I don’t remember the chat - maybe different units do things differently. What I do remember is the consent form where a doctor I didn’t know had handwritten down all the things that might go wrong. It was a long list! I remember chuckling to myself - it was the feeling of “oh well, here goes nothing”. I think a lot of it is legal stuff they have to do to so that people don’t go back to them afterwards.
In terms of timeframes, they’ll probably not give you a straight answer as the experience can be so varied and sometimes unpredictable but you’ll probably get a feel for what they want you to do. Often I got the impression it was a “suck it and see” type approach - common sense usually comes in to play - I had an 8, 6 and 2 year old at home and they didn’t tell me I had to avoid them because they realised that would be impossible and do me no good in any case. But you will be vulnerable for a period of time so caution is always good, especially in the early days.
Hope it all goes well, try not to worry too much about it all, and please keep us updated as to how you get along.
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Yeah I'm assuming that it is kind of inevitable that I'll catch something from her at some point in the journey (nursery is a breeding ground for infections at the best of time but over winter especially!). Provisional date for SCT is 5th of February so you can assume to hear A lot from me between now and then hahaha
You are almost exactly the same day as me - I was 4th Feb. It is actually not a bad time to do it, if there is such a thing. Everything is cold and dark and all you’ll feel like doing is sleeping! And hopefully by spring/summer you’ll be feeling much better.
That is so true Greg.
My second SCT was mid October and the nights were drawing in and it felt like I was hibernating but my 1st SCT was during a very very hot June back in 2014 and it was so hard looking at the blue sky through my little window for a month :(
i know they told Katy to not get paranoid, your new immune system needs to come into contact with some bugs to make it start to work, but be sensible and not put yourself at risk unnecessarily, so no public transport at peak times, lifts, and crowds etc but don’t hide away- and we’ve had the panic with the possible chicken pox and Katy said they were not really worried at all! I’ think it just makes you more aware of things you usually would never think twice about- as an example my hubby and I were on the bus a few weeks ago, someone in the seat opposite was reading the Metro paper. He sneezed and didn’t cover his mouth (uugg) and then he put the paper down and got off the bus- someone else came along and picked up the paper- something that happens probably a lot but we never really think about it but now we carry hand gel around! Is February definite? Do you have a donor? Cos sometimes I think they take you quicker if there’s a donor- Katy was told 6 September she needed the transplant and she had it on 25 October so it was a pretty quick turnaround I think, because as soon as they knew Lisa was a match they gave her a date. But you’ll get Christmas over with and then it’ll not take long to come around
It definitely makes you more aware! I left the western yesterday after my.last ever chemo until the SCT (!!) And my daughter has done nothing but sneeze and cough all day and I'm busy covering her in antiviral foam and dettol-ing all the common touch points in the house in a desperate attempt to avoid it! I have a donor, it's my dad. I was told in September I'd need a transplant too but that was right at my diagnosis so it was always part of plan A, and the date on February is provisional, they said to my dad it could move forward or backwards by about a week but not likely to be more than that, so it's looking like I'll go in the last week of January for conditioning - brings a whole new meaning to the phrase new year new me! It does sound like they just want you to use common sense then, which is what I've been doing so far. Things like not picking my daughter up from nursery and not attending her swimming lessons when I'm neutropenic so I'm not breathing in that wet poolside air etc, but my consultant at the western upon my first discharge has advised that I go about my normal life when not neutropenic, but to be mindful
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