Hi everyone.
Tomorrow we have our first appt at Southampton hospital with the specialist for husbands Stem cell transplant. Its his first one so not sure what we will be diacussing. I guess the process and preperation. Thank you Highlander as I have your list. My husband wants to know success rates and things. Hes not a well man with heart disease, stents and Diabetes. And this Brentuximab is a tough one for him. Any advice or anyone outline th first meeting? He has Aspergers too so I am like an interpretir when we discuss medical stuff!! Any help appreciated everyone and hope yiur journeys are positive x
Hi Scaggette and good to see you have made your way over to this corner.
Yes get your questions ready but I have to say we did not need to ask many questions - more asking for clarification as to what they were saying and what it meant.
I had two Allo SCTs so two ‘Talks’ with my SCT teams.
The first one was indeed challenging and yes, very scary and a lot of the info went over our heads but we persevered and felt we had a good understanding. At times we were like rabbits caught in head lights as our attention was often focused on the bad things that could happen and if we had not been asking for clarification we would have totally missed the good parts.
My first Allo SCT did not work so going through our second ‘Talk’ was no where near as scary as I had the T-Shirt…… apart from “Mike if this does not work we don’t have tools left in the box”
The ‘Talk’ is where your team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving your team permission to take you to the point of being open to life threatening infections and side effects……. then bring you back with n ‘All New You’ it all sounds very scary but it is ALL very do-able.
The talk is not there to scare you, but to be honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.
I have talked with many people post SCT and a very high percentage will agree that the SCT process was nowhere near as bad as what was said during the ‘Talk’ and in all the info provided.the main thing people talk about was the boredom
As to success rates - that is a very difficult question to get answers for but they won’t allow folks into SCT if they don’t think it will have a good chance of success.
A few years after my second Allo SCT I asked my head SCT consultant about success rates. She started by saying that in my case my chances of survival without a successful Allo SCT was 0% and gave me two and a half years on the clock. But I did take this as a encouragement as I am doing great when I should not now be around ;)
She then said the then national average SCT survival rate (2016/17) were at 90% with her unit being at 92% going on to long term remission (3-5+ years)
She also said she did not have national figures, but for her unit the average life expectancy for folks who did not go forward with a SCT when it was offered and was not taken up 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 other health issue and that their pre SCT prognosis was very poor with their conditions not responding to the SCT process. I have Asbestosis and this was looked at very closely but as my prognosis was not great we rolled the dice......and got the 6.
I then asked her, so why are the some figures used during what we call '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 normally based on the lowest performing UK units, but she also said who knows if we can keep our success rate as good as we are doing now but we are doing good so far but it is all about how well the folks coming through the doors get on with the process.
She also said that her units long term remission rate has been going up for years now and the stats will always be lagging behind the reality at looking at folks three years down the line......... but I have found out through a back door source that their stats have indeed improved in the past two years :) .
When it comes to SCT Google will give you a 1000 answers and none will be helpful.
This is my Simple Guide to an Auto (Autologous) Stem Cell Transplant.
For an Auto SCT the patient will have to be in a window of remission so that their Stem Cells can be harvested this often requires what is often called salvage treatment.... basically some chemo that can often be strong but is designed to achieve the goal.
The patient will most likely have a week of injections to make the bone marrow work overtime to produce lots of Stem Cells.
To harvest the Stem Cells a line is put into the arm. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job by the bonemarrow so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood stream.
The machine can pick out millions of stem cells over a 4-5 hours process. The harvest is on the whole painless and once harvested the Stem Cells are frozen.
Leading up to the actual SCT the patient will have to have treatments to get to a stage where the SCT can proceed.
So 7ish days leading up to the SCT day he/she will have to go through what is called Conditioning, its a method of taking down the bodies Immune System completely.
This is normally done again using some very strong chemotherapy and for some like myself, Radiotherapy..... but I had an Allo SCT.
Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion through a Central Line.
The Stem Cells then go to the Job Centre in the Bonemarrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells and the all ’New You’ starts to grow as the body starts to reboot the Immune System and over time the blood counts come back up.
Its all very cleaver, very science fiction but all very do-able.
Each SCT Unit will do their own thing but for an Auto SCT the conditioning can be done as an out-patient then when the patient is get close to get their cells back this is done in a dedicated SCT unit.
Its a very clean environment (Ward) in a hospital, the patient may even get their own on-suite room. The time in the unit will be different for everyone but expect at least a few weeks - but the medical team will keep the patient well informed.
Remember the patient does not have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until new immune system kicks back in. The patient will be an in-patient for some of the time but this all depends on how fast the ’New You’ starts to grow. The average is about 4-6 weeks in the unit but can be quicker.
Once the patient gets discharged they do need to be very carful during the weeks following the SCT as the new Immune System is still growing so care with coming in contact with infectious environments but their team will give lots of guidelines.
Expect weekly appointments for bloods etc as they will want to keep a close eye on the patient.
I would also say that the fatigue following a SCT is much higher than going through regular chemo but that could just be me, going off food and some mouth issues do come along but these SCT teams will help as they have seen it all before.
You will have lots of questions so you will find me and others able to help out with anything SCT related.
This is an ongoing threads covering being in a SCT Unit Checklist for SCT Unit
Once you know the name of the Conditioning come back as we can help with that one as well.
I always say that you can’t do anything to control the actual medical treatments but you can make a difference to how you get through your journey, but we can help you get though this.
Good morning, yes as I said before it is a rabbit in the headlights meeting.
Processing the information can take time and it’s important for you both to talk this through clearly.
The tests like echocardiogram to check the heart and nearby blood vessels along with a Treadmill test.
CT scan to check the condition of other organs such as the lungs, liver and a 24hr Kidney function (pee) tests
I had very detailed and scary Lung Function test to check my lung function and lung capacity due to my asbestosis.
A dental examination.
Its all full on and will give the SCT team a picture of his ability to go through the process and a risk rating.
My mortality risk rating was not great but I was given the choice of yes or no.
We then had a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so they wanted to make sure we understand what we were letting ourselves in for.
We also had meet with a Macmillan Financial Advisor to check that we were getting all the financial support available. The results of this one surprised me, At the time I was retired but. not state pension age, my wife was working full time but with flexibility and we are not hard up……. but the adviser was amazing and the benefits she accessed supported us through the two SCT and post treatment especially the costs of being away from home the the 1000s miles we had to drive.
I do recommend that you call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here and get a benefit and financial guidance review done now as this could help regardless SCT or not.
My first SCT did not use any chemo to take my immune system down. They used some clever (new) radiotherapy and targeted therapy. I had no issues with this and recovery was a few weeks….. as it was new it did not work for me but I have talked with others who have walked the same journey and it worked for them.
I will add that due to the full on chemo used for my second SCT I now have long term heart problems but these are controlled.
Always around to chat and listen ((hugs)).
