MDS, Refractory Anaemia and possible SCT but not possible I'm told.

My husband has MDS (and PNH, but that's another story) and you are right, it is rare. And difficult to get specific information and support, particularly as there are so many variants. (His diagnosis was RCMD transfusion dependent)

He had an SCT in February this year and is doing pretty well. He certainly feels much better than he did pre transplant ( when he had platelets of 7, Hb 80 and neuts of 0.8). He also had some heart problems but the cardiologist felt they were possibly caused by the strain on his heart from the severe anaemia, and it didn't prevent or delay the SCT. He's been advised to see the cardiologist again to see if his heart has improved.

I think there are plenty of examples of people having SCT over 60 - I didn't think it was that unusual., There's certainly a fair number at the follow up clinics we go to, and they are doing very well! However, I'm no medic and can't comment on all the additional issues you've got, but I'd ask more about SCT as it is the only thing that has the potential to get rid of MDS.

Good luck

Custard x

Ah Hope, you found us, so welcome again and please remember we are not experts but are a friendly group of people :) and I see  has got to you already :)

As I said to you on the New to Site page you may find someone who has MDS and went on to go through a SCT...... and look first hit. Due to MDS being an issue of how the Bone Marrow produces certain types of cells a SCT is seen as a possible treatment route to take.

I also said that a SCT is a mission and a half :(

Even entering into an Autologous (Auto) SCT (this type of SCT is seen to have the chance of less complications) involves some very strong Chemo. It also needs your condition to be under control so that the medical team would be able to harvest clean and healthy Stem Cells.

These cells are stored, then after some conditioning treatment you would get the cells back. The conditioning treatment is designed to 'take down' your immune system so you would be open to infections and these at times can turn out to be bad. The Stem Cells are returned to you body then the waiting game starts to see if you grow an all new immine system that will eradicate your MDS.

From what you say in your post above I am assuming that you may be over 60?

I was one month short of my 60th birthday when I had my second Allo SCT - an Allo is when you get cells from a donor. I also had a few underlying health issues but on the whole was healthy. This did help my team agree to go forward for the second Allo. It was also mentioned that they would not normally do an Allo SCT for someone over 60, but each case would be reviewed on there own merits. An Auto SCT was never spoken about as it would not be suitable for my condition.

I do hope that some of the forum member can give you some honest advice.

You should also continue to have some open and honest discussions with your medical teams.

Please take care and get back to us with any other questions x

Hi Hope, the was a tie when it was thought you had to be under 60 to be able to survive a SCT but that is no longer the case and I believe the has been a recent study that has highlighted its very much about the individual and how fit they are and I have recently seen something referring to a 90 year old having a transplant. So, so long as they don't see the other issues as major risks, no reason why, if you want to go down that road, you should not be eligible too.

John

Highlander,  thanks for your really quick response, and thanks to the others who also have responded. I must say I wasn't expecting that. I can see and feel the care you're sending. I'm 59 now. I can't understand why my doctor has all but ruled out an auto SCT so quickly and that was the only time treatment was discussed, apart from "ok, we'll get some more Aranesp and see you in 6 weeks". It's just the same old thing happening where I go and results are much the same every time.  My appointment is in fact today! I've been up all night, since 2am cos I don't sleep much due to the elbow nerve problems. Nerve pain can be excruciating! I'll have a word with my doctor about what's expected to happen with my treatment in the future is the expected route. My red blood cells will surely dip too far, and by that time will I be too old for surgery?

Thanks a lot fellow sufferers and may tomorrow bring good news to you all

Auto SCT was never discussed with my husband...it was allo all the way. Auto wasn't deemed suitable for the MDS my husband has: as far as I am aware there isn't a drug/chemo regime that can get MDS into remission.

Have you discussed Azacitidine with your doctors?  I know of several people with MDS who have had several successful years on this type of chemo.

Custard x

Hi Hope you are getting some good support.

Although we will most likely never meet each other we TOTALY get the SCT journey. Regardless of the ups and down we are all standing on the sideline giving each other support.

So you have another appointment today, I would say that you have had lots of clinic appointments but do you have a note book?

Its one of the essentials when going to clinic appointments as its the place where you put down ALL the questions that are going round your head, especially those questions that jump up at sillyo'clock during the night. Its also the place where you take notes, make sure you understand everything the Consultant has said and if something goes over your head - get them to unpack it for you.

Custard has given you a couple of good thoughts and a very good question for your note book.

Your note book demonstrates intention - you WANT to move forward, you WANT to get all the possibilities looked at and you WANT answers to why certain treatment routes are not made available.

What would it take for you to be considered to have a SCT?

Another pair of ears is always a good thing to have with you at appointments.....as though you have them at the bottom of your bag ;) ;)

All the best today and get back to us as we are always around x

Hi Hope and welcome! 

I think Mike has given you a good weapon and idea, the notebook! Take it to clinic and insist they give you time to write down replies to your questions! 

Custard is the lady with relevant information for you, even though her husband has a different variant of MDS. 

I hope today's appointment is more positive for you.....do feed back! 

Oh yes, nerve pain is rough, I do sympathise!

Me? I'm the Mum of a lass who had Hodgkin's but didn't get into remission till 7 1/2 years of treatment had been tried, and to keep that remission she went through an allo SCT and is now, almost 6 years later, doing ok though with an allo, common infections can turn more serious, and yet again she's needed antibiotics. But she's still here which we thought might never happen!

Hugs xxx

Hi hope

I have AML but was told 74 was the age limit for SCT. But was also told general health was factor more than the number of your age.

There are certainly lots of outpatients at my clinic who look late sixties who've come through ok. I am 65 now nearly day 100 after Sct. Blood counts all good just had Hickman line removed. Biopsy due on Monday. Just on going sensitive digestion seems only problem.  It was rough going through SCT I won't deny due to strong chemo but it wasn't for long. Now my problem is feeling like being social but having to stay away from crowds and possible infection.

Tessa

Hi custard  (strange calling someone that! ) hope58 calling

Thanks so much for getting back to me so quickly, I wasn't expecting that! So far I'm lucky that the treatment, Aranesp, is helping my bone marrow to spit out an increased amount of red blood cells which it's supposed to do and my count is above 100 although there's a definite fluctuation. I'd never heard of MDS before  (MDF yes lol), but what I'd like to ask you and anyone else reading this, is how did your doctor(s) tell you the diagnosis? My doctor I'd known as my haematologist for a few years due to my haemachromatosis and I know his hobbies and about his wife and in laws and holidays and he knows about mine. So when it came to his diagnosis I can understand why he told me the way he did and not for one moment would I criticse him, but it was strange. My wife was there also and we have discussed it several times. 

What he did was he gave me a piece of paper about the size of a post it sticker on which he had written "myelodisplasia" in poor doctor's handwriting and said that I'd "probably like to go home and look it up on the Internet"! I've a few medical problems but nothing has been diagnosed in that fashion. To be quite honest, I found it difficult to read his handwriting and I'm not sure that he spelt it correctly! 

As I've said, I can fully comprehend why he did it like that. I didn't realise how serious it actually is because I was having difficulty with back pain which eventually put me in a wheelchair. 

So any comments? 

hope58

Hello Hope,

My husband was diagnosed all in a hurry. He'd been increasingly tired and we had noticed some bruising and he had a minor hand operation where he had a substantial bleed afterwards but all that was hindsight. We went for a walk along the coast path and he was really struggling with severe chest pain. our initial thought was angina and he went for blood tests with the GP the next morning. The GP rang us four times that day and said "go immediately to the hospital tomorrow morning - they are expecting you". We did, and they were - it was the haematology/oncology department which was a clue.

Further tests were undertaken that day (including a BMB) an it was case of elimination - it's not pernicious anaemia... We saw the consultant on and off all day (test...come back in an hour....) and by the afternoon they had diagnosed MDS. (the PNH diagnosis took longer nad was a great surprise, it is literally a "One in a Million" condition).

So from not really an inkling, to serious condition, SCT probably needed was just a couiple of days.

The staff at the hospital (not the one where he had the SCT) were brilliant, They were all very caring and kind, didn't patronise us, let us spend as much time as we needed asking them questions and told us very gently. "I'm so sorry, you have myelodysplastic syndrome" and then explained what it meant. And gave us shed loads of booklets! I'd not heard of MDS before either...have now!

It has certainly been a journey so far...

Custard (not actually my real name!) x