Hi all, I'm a newbie to this site although I've was diagnosed with MDS and within that, Refractory Anaemia in March 2015 . Doesn't seem to be much of that around- no group for that so I've been advised by one of the super caring moderators that this is the group closest to my condition so if you allow me in, I'll be happy to unload my problems with you.
Right, MDS is apparently rare, so I can add that to my other rare disease, haemochromatosis. In fact the treatment for that is a factor that brought my MDS to light. Btw I've also a B12 deficiency and pernicious anaemia has been mentioned in the past. I was having blood removed weekly to lower my high ferritin level (haemochromatosis) when I collapsed one night and I was found to have a low haemoglobin level-82! So began the quest which ended with the MDS (refractory anaemia) diagnosis.Â
Well, for the last 18 months I've been injecting myself weekly with Aranesp which has helped my haemoglobin level although the general trend is slowly downwards, in fact it has dipped below 100 a couple of times. I've done a lot of research and frankly my future doesn't look good mainly because of my age-60 next birthday. I ran a question by my doctor about a bone marrow transplant and she said that SCT would be my best option BUT it probably wouldn't be offered because the operation would likely kill me! Anyone here could shed some light on this? I also have heart disease, diagnosed by my heart surgeon 6 years ago after a heart attack, followed by heart surgery (stent fitted). And I'm being treated for bilateral ulnar nerve problems, indeed just today I have received a date for my first operation - 19th October!Â
So you can see, there are complications. Does anyone know of 60+ SCT, successful I hope? There's always hope, hence the username .Â
Oh, one other thing! Almost forgot! Around the time of my MDS diagnosis I began to get back and leg pains which through all this got progressively worse, so bad that I can't stand or walk a little without severe pain. I'm now a wheelchair user and have to have a high daily dose of morphine although it's still not at a level that masks the pain. I have been advised by a consultant that an operation on my back wouldn't be of any help although he did offer me a second opinion from another consultant which I accepted and that's going to be in a couple of weeks. He, believe it or not is the brother of the surgeon who's going to operate on my elbow shortly!!
Sorry to unload my problems on you but I think they're relevant and if anyone is still awake lol can you give me hope please?
hope58
Hi Banka, when I talk with folks just like yourself who are looking down the dark tunnel of SCT I often think back to the words my consultant told me in 1999 "Mike, there is not cure for your rare condition and we can only maintain you and if the condition goes wrong then it will kill you"........ zoom forward 14 years and it did indeed have a few very good goes at getting me.
But at that exact point in time the combined development in treatments and the amazing expertise in my local Heamatology Unit in Inverness and then in the wonderful Beatson in Glasgow actually built a big medical dam to stop the onslaught of how my condition was being aggressive and got me into a position for going through my two SCTs.
I now am able to look back to September 2016 when I was told I was in remission for the first time in 17 years and then again in June this year being discharged completely from my teams care - miracles can indeed happen.
You just need to continue to keep your eye on the end game, look for the very best outcomes and keep hanging on to hope.
Always around to help out.
Oh yes it was a complete surprise and a shock.
It was back in June this year, so just under 3 years post Allo SCT number 2. I was having my then normal 3 monthly Video Conference with my Head SCT Consultant from The Beatson in Glasgow and my Macmillan Nurse Consultant (who I have got to know very well) was sitting in with me.
My SCT Consultant reviewed all my tests, my last CT including that fact that I have been in remission since September 2016 and my Whole Blood Lymphoid and Myeloid Lineages being 100% Donor in September 2017....... and basically said I was discharged.
My Macmillan NC had to ask the SCT Consultant to clarify what she actually meant by discharge as in all her years she had never once discharged anyone following a SCT and did not know how to do it - lol...... I had to look at the appointment form where they mark up your next appointment for her and I found this little box at the bottom for discharging folks - lol
My head Consultant went on to say that they (The Beatson in Glasgow) were starting to remove the - as you call it "the crescendo of fear" as they actually think that the regular clinic appointments can for a good number of folks just create unwanted stress and served no positive purpose and could actually propagate more stress and mental illness.
Her parting words were something like "......you know where we are, you know your body better then any of us and you do have the contact details of your Macmillan Nurse. I will send a letter to your GP and tell her what and why we have done this and what she would need to look out for in the future and if you go see her a few times a year to review your meds and a quick check up then great - just enjoy living this new life you have been gifted without looking over your shoulder all the time"
By this time my Macmillan SN was in tears and she was going around the other staff telling them about what had just happened.
Since then she says that a number of other post SCT have been discharged.
Good morning . It is 5 years to the day when I received my very first 15 mins intravenous Chemo and thanks to Facebook these memorable dates keep coming round...... my wife and I did post my whole journey on Facebook so that all our family and friends understood what was going on and that no misinformation was going about and this in turn made our family and friends step up to the mark in supporting us.
I look at these memorable dates and think back to the initial doom and gloom language and body manor some of my medical team were using. So my wife and I actually got our team together and had a very open and honest conversation with them all.
We made it very clear that I was going to get through this and that they just had to do what they do best and treat me and leave the mental battle to us. If things were not working or there were issues they were told NOT to just come with the problems but also have the possibilities thought through.
Initially this approach did frustrate my team but they eventually got the idea. A few years on after my second Stem Cell Transplant my Head Consultant eventually agreed that our positive mindset and forward thinking actually made them work even harder to find 'fixes' for the problems coming back with the possibilities......... we will always say search for the silver linings.
Hi , I did not have MDS.
I had a different type of blood cancer - a rare T-Cell Lymphoma but the Stem Cell Transplant proccess is basically the same for everyone.
Use chemo to kick back your condition so you are in remission and if you are having an Auto SCT your Stem Cells are harvested and frozen (but I never was in remission so I had to have an Allo SCT with Stem Cells from my brother)
Use conditioning (chemo and possibly radiotherapy) to kill your immune system.
Rebuild your immune system with your harvested Stem Cells or for me my brothers Stem Cells.
The all new you has been started.
Hi , I see that you have been getting some great help over in the AML Forum and also from our Nurse Caroline.
His medical team will always look at all the steps as to what can be done if the treatment being used is not doing its job, so SCT could be on the cards but as you have been told on the AML Forum this may not be the case. I have no knowledge of anyone with RAEB who has been through SCT on this forum in the past year or so but lots of folks with AML have been though SCT and indeed are getting ready to go through it.
It is very confusing and you need some clear understanding what is going on and what the plan is. As Caroline has said RAEB can transform into AML but this is a guessing game so best to deal with the facts that are on the table and not think to far in advance.
Could I recommend that you prepare for your next appointment with his team. I would always recommend you get an old fashioned note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.
I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.
The note book helps you deal with the information overload between your ears so look at questions like:
What are the proposed treatments Chemo, Radiotherapy......?
What are the names of the Chemo Regime?
How many cycles of Chemo and how long will each cycle last?
Does this require inpatient time (over night)
How many sessions of Radiotherapy and how long will all the treatments take?
It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)
You should also join the groups you are using, you can do this by looking near the top under the forum heading and hit 'Join this Group' you should also go to the right of each of the forums home pages and select how you want to receive email notifications when some one answers any of your questions.
Finally, I would recommend that to help keep your specific support in one place start your very own thread as this keeps all your help in one place - you do this by hitting the 'Start a Discussion' tab just under the Groups headings and post away.
Always around to help out.
