Myelodysplasia

Try not to get too bogged down on the negatives of it all, our lass was got into remission after an awful lot of treatments failed and took her time deciding to go for her allo, knowing the risks involved. She’s past it all (it was in 2011) and doing ok now though due to the treatments is CV as she needs immunoglobulin which she now does herself.

don’t be worried about the fact you’ll probably not be allowed visitors, she slept an awful lot, explaining that while asleep she felt fine and fully well! Daft I know! But it’s a big re-boot for your body and rest with as much gentle exercise as you can manage, is a good way to get through. There was only one day in that month that she simply didn’t have the strength and stamina to get showered and dressed - yes that counts as exercise!

Encouraging hugs xxx

Hi Moomy thank you for your words of encouragement it really does help to no people who have been through it or know some one who as, it can be quite a scary world when you keep getting loads of info thrown at you.

Yeah it's strange for me at the minute as I told my consultant if I hadn't found out what was wrong I wouldn't have known I was seriously poorly as I don't feel ill at all just very tired some days and a few more bruises than normal, but he said that's a good thing at the minute as they can get more prepared before they call me in and are not having to rush it along especially with covid situation in the hospitals at present.

having a shower can wear me out now, I've even gave up trying to blow dry my hair as I can't hold the dryer up for too long as it causes my arms and shoulders to ache really bad.

not got to see him for two weeks now as waiting to see if sibling tests come back and how good a match they maybe and then it will probably be another 4 weeks before I actually go into the ICU, the only thing I don't want to think about is leaving my Fur-baby for that long we not been apart in 3 years , my other half keeps saying and what about me I usually just laugh and he will say yeah you get your priorities right, and I say yep I do it's the dog then you LOL

Thank you for your big hugs and I send big hugs back to you and your family and hope that the future remains bright for you all xxx

A lot to look forward to. However, the more you learn the more relaxed you will be.  I was diagnosed in 2015 with 20q deletion Myelodysplastic Syndrome. 23% of my marrow. Even though it is generally low risk, according to one study, 14% still progress to AML. I was 63 at the time, so unless you are considerably older than that (Not!) there is far less to worry about. Actually, the younger and more resilient you are, the easier the transplant will be. Now, I am in the States, so some adjustment is to be made there. I was relatively active about one month post transplant. Went back home at day 97. 

The MDS was reduced, miraculously, from 23% to 2.6% by two infusions of a then-experimental regimen. In my case, it involved three of four drugs in a regimen called TREC. Treanda (Bendamustine), Rituxan, Etoposide and Carboplatin. Dr. removed the Rituxan as it would not have been effective. Two infusions and the MDS was knocked back to  2.6%. One additional infusion and I went to transplant. 

Oh, one more thing. MDS was one of three cancers  I had at the time. The other two were Angioimmunoblastic T-Cell Lymphoma, the other Peripheral T-Cell Lymphoma Not Otherwise Specified. Only one would respond to a given treatment.  I have had about 100 tumors total, and lymphoma in my marrow, spleen and ileum (small intestine).

It is all very doable. Hope never disappoints.

Hi thank you for your reply you certainly have given me food for thought and your certainly a fighter, I cant even begin to think what went through your mind having one cancer is driving me nuts, my consultant was hoping that when my genetics came back that my risk would be low but unfortunately he said that i was a bomb waiting to go off as I'm very high risk. The main thing is says I have going for me at the minute is that I am relatively young (56 this year) and apart from the cancer relatively fit so he didn't want to drag me in hospital until he had to because of the covid situation, but I'm seeing him this Thursday and then I will be called in for about a week stay to start the initial treatment to get me ready for the long stay of up to 5 to 6 weeks for the main treatment and the SCT, which doesn't worry me too much it's the awful biopsy I hate I've not felt pain like it even though I was on the gas and air and unfortunately I will have to have at least two more , I know it's all for the right reason and people like you are an inspiration to me and I will continue onwards and hopefully upwards.

Please take care of yourself in this strange world that is affecting us all and keep safe x

Hi I had a stem cell transplant back in 2013 for ALL (acute lymphoblastic leukaemia) and I am doing well. Have a read on my profile for my journey Paul1969 .

I am assuming you a referring to the bone marrow aspirates aka awful biopsy. I had about 15 in the end and agree they aren't much fun. The 1st one was the worst. Not sure if it was because I dint know what to expect or because my marrow was so packed full of white blood cells. I wasn't offered any gas and air but I always insisted on 3 vials of  local anaesthetic before I would let them start and whilst it was uncomfortable it wasn't then painful. I used to chat to the person doing it for the whole time as well to try and take my mind off it. When I was an outpatient I used to take myself off afterwards for a couple of pints and a bag of peanuts at the pub just by Barts as a reward! 

Hi Paul glad to hear you are doing well. Yeah I don't mind when they take the aspirate, doing that bit to take the fluid I can manage but when they take a bit of the actual bone it's horrendous I felt like they were drilling into my hip and spine so not looking forward to that bit as the gas n air only worked slightly for that part, but I know it is all part of my journey and I will keep going.

Just such a shock when I found out as I had been having very bad blood problems for nearly 12 years and the hospital and my GP at the time just kept saying that it looked liked something I will have to live with as they didn't know what was causing my blood levels to keep dropping and my red blood cells to keep getting large, my white cells were disappearing and  I was constantly in an out of the hospital having blood tests but they just kept saying the same thing see you in 3 months no change don't know why...Wasn't until I changed doctors that everything seemed to happen at once I had only been a patient there for about a month when I had a call from a consultant to say we need you in now as my blood level was not right and should have been monitored more , I had to go in for a transfusion and he was surprised I had not had any in all those years when my levels were very low , they had obviously looked at my samples a bit closer and when I saw the consultant he said that although this can happen over many years with people not even having any symptoms or health issues it was quite clear that I should have had a biopsy a long time ago as I had been seeing my old GP for a long time with this issue and feeling exhausted all the time and constantly in pain especially my lower back.

I'm just relieved I did decide to move Doc's as I may never have found anything out 

Thank you for your message and I will check out your Profile and keep safe and well 

I have had nearing 20 bone marrow aspirations, I suppose. Have lost count, really. In the end, they were, for me, about 3-4 seconds of rather strong but dull pain, if that makes sense. One in particular left my hip sore for a fortnight, but the rest were far better. A few I had no after effects at all. Toward ther end of the run, I was trying to conceive in my mind a "marrow aspiration port" which could be implanted much as chemotherapy or apheresis ports are - but all to no avail. Inn the end, we are stronger than we know..  

Hi thanks for your reply, wow that many and yes that does make sense and I know that I will have to have a few, but I know its all for the right reasons, but sometimes I suppose human nature takes over and I get really overwhelmed with all the info that gets chucked at you and you start to imagine all sorts of goodness knows what.

I'm going in soon as I have had my Covid Jab to start my chemo and I will be having Fludarabine, I was suppose to be going on a trial but my consultant as decided to go down this route first as he said that never going through anything like this he doesn't want to bombard my body with anything too strong at this point so when I go in for the 5 weeks I'll be started on it then.

So onwards and upwards

All the best. Chin up as you are not alone. Keep Calm and Chemo On!

My dads been diagnosed with mds his been told his to much of a risk for a bone marrow transplant but it’s his choice  and we don’t have any matches on the data base for him his been kept on the da base in case but it’s not looking likely, his going to be starting treatment soon your story sounds completely different to my dads I just wanted to talk to someone that understands to give me a better understanding any advice would be appreciated