Hi and Hello

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christina
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Re: Hi and Hello

Post by christina » 18 Mar 2019 13:11

Hi David and Paul nice to read some positive news, sure you will `gallop`along now, no place like home, enjoy every day and I'll be thinking of you both best wishes Tina
DTUB10
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Re: Hi and Hello

Post by DTUB10 » 19 Apr 2019 18:35

Hello again folks,

Thank you for your kind words and encouragement. I managed to get home on 17th March, and what a huge relief that was. Although I received great treatment throughout the long months in hospital, I was reaching the limits of my endurance and my morale was flagging. A big part of it was not enjoying my food any more because my sense of taste was all messed up and I felt slightly nauseous all the time due to the anti-rejection drug.

I started off on twice weekly outpatients visits for blood tests, a Hickman line dressing change and a consultants appointment. Now I am down to once a week, several months ahead of schedule because my numbers are good and I have not had any infections. Some of the medication was reduced quite early on, which made me feel much better. I have experienced some very unpleasant symptoms, which I won't go into, but I am never sure if it is GVHD or the medication. Thankfully they only seem to last for a few days. I was warned about fatigue, but that seemed to pass after a couple of weeks. During that time I sometimes felt extremely cold, no matter how much heat and clothing I used. It turns out that all the energy from the body goes into blood cell regeneration, taking heat away from the rest of the body.

Now my platelets are up to 130 and my Hb is over 100. WBC and neutrophils were doing well but have dropped back a bit, but the doctors don't seem worried.

Most recently I have had to start taking stronger anti-viral drugs because they detected the CMV virus. We all carry it, but when your immune system is fragile and being artificially suppressed it can be very nasty.

So the bottom line is that I am doing well, enjoying my food again and my hair is just starting to grow back. I still consider myself extremely fortunate and savour every day. The past nine months seem like a bad dream and I am tempted to overdo things. Fortunately I have a wife to nag me into following the doctor's advice. My muscles are definitely weaker after four months of inactivity, so it doesn't take much to wear me out.

Now that the spring weather is here I am doing a bit of work in the garden, although even there I have to be careful about cuts, scratches, contact with soil and even sun exposure. Apparently the chemo takes away your UV resistance and makes to more prone to skin cancer.

If anyone is starting out on the SCT journey, all I can say is that a successful SCT is completely life changing. I don't want to be over optimistic at this early stage, but I really do feel as though I can put the MDS and AML behind me and look to the future again.
David Age 60(M) dx MDS Aug 2018 no genetic mutations. Progressed to AML with FLT3 in Oct 2018. Three rounds of chemo. SCT Feb 2019. Relapsed June 2019 - Now on Azacitidine, Venetoclax. DLI to boost the SCT has caused skin GVHD.
christina
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Re: Hi and Hello

Post by christina » 21 Apr 2019 12:23

Well done David you've done so well and thanks for sharing it with us, if I was 10 years younger I would have a go but at nearly 74 I just don't feel I could go through that treatment so just enjoy every day, and do what I can on the medication I'm on all the best for the future Tina
DTUB10
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Re: Hi and Hello

Post by DTUB10 » 23 May 2019 22:55

I understand Christina. The SCT is a long and difficult process, with many risks. Any underlying health problems increase the risk considerably.

I went into it at the age of 59 and in pretty good health, and I found it tough going after three rounds of intensive chemo. In my case I had no choice. My type of MDS was high risk so a SCT was my only option from the outset, even before it progressed to AML.

Today I reached Day 90 post SCT. My progress has been good, but not without some setbacks and unpleasant side effects.

Hopefully I can have the Hickman line removed in a couple of weeks and a gradual reduction in the anti-rejection medication that causes most of the problems.

Every outpatients appointment is tense, waiting to see the blood test results and hoping that things are still moving in the right direction. As I look around the waiting room I count my blessings. I have already been through the initial shock of diagnosis, the transfusions and chemo then the tense wait for a donor. I hope I don't have to do it again, but I suppose I would find the strength somehow.

Being realistic, even if I stay in remission and the transplant does not fail, my life span will have been reduced by the treatment and the stress. However life is sweet. Six months ago I was doubtful about reaching 60, but I am only two weeks away from my birthday now and I have just applied for my 60+ travel pass.

My next goal is to reach state pension age at 67. :)
David Age 60(M) dx MDS Aug 2018 no genetic mutations. Progressed to AML with FLT3 in Oct 2018. Three rounds of chemo. SCT Feb 2019. Relapsed June 2019 - Now on Azacitidine, Venetoclax. DLI to boost the SCT has caused skin GVHD.
christina
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Re: Hi and Hello

Post by christina » 26 May 2019 12:09

David so happy to read your letter, you have had a big journey and deserve to be well and happy and I'm sure you will with your positive attitude which I know gets knocked sometime. I know I wouldn't have coped at my age but would have had I been 10 yrs younger, but am just about coping with the azacitadine and leading a fairly normal life, good luck with everything in the future, it's a shame more people don't share their stories on here as I know I feel better reading yours warmest regards Tina
DTUB10
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Re: Hi and Hello

Post by DTUB10 » 23 Jun 2019 11:36

Unfortunately my stem cell transplant has started to fail and the leukaemia has returned already.

I have been back in hospital for a week and half now. They have started me on azacytidine and venetoclax to try to buy some time, but the prognosis is not good.

I don't feel unwell, but they won't let me go home because I am running a constant temperature.

So my world has been turned upside down again. The pure joy of a seemingly successful transplant has suddenly changed to despair. What a cruel disease.
David Age 60(M) dx MDS Aug 2018 no genetic mutations. Progressed to AML with FLT3 in Oct 2018. Three rounds of chemo. SCT Feb 2019. Relapsed June 2019 - Now on Azacitidine, Venetoclax. DLI to boost the SCT has caused skin GVHD.
DAWS9
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Re: Hi and Hello

Post by DAWS9 » 26 Jun 2019 19:39

Hi all, this is my story so far.....
In 2015/16 I began to feel exhausted all the time so went to see my GP whom arranged a blood test and then to see a consultant in the local hospital haematology department. I had a few appointments then had a bone marrow biopsy, all good so far you may think! That was until a few months ago I began to feel the same again and had a close call when I fell asleep behind the wheel and almost crashed. Thankfully neither anyone around me or myself were hurt and no damage caused. Anyhow I digress, this took me back to my GP again and more blood tests to find I was anaemic now. Again I was referred back to the hospital where I found out I had MDS, I wouldn't have minded so much about the diagnosis if it weren't for the fact that the hospital had known the diagnosis since 2016. However it seemed to have failed to filter down to myself, I was feeling rather angry to say the least to know the hospital had been sitting on this for three years.

Anyway I have had 3 appointments so far and not once have I seen my named consultant, each time it has been someone different and I have not been given any information about MDS or my diagnosis. Therefore I still do not know my full results and have no idea of my prognosis or type of MDS.

Perhaps one day I will know my exacting results.

Apologies for the rant on my first post.

D
AWOX15
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Re: Hi and Hello

Post by AWOX15 » 26 Jun 2019 20:42

Wow! I find this unbelievable, but as you have found yourself on this webpage, have you contacted Sophie at Patient liaison, Kings College Hospital London?
You certainly need some answers and Sophie will certainly guide you.
Good luck.
christina
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Re: Hi and Hello

Post by christina » 27 Jun 2019 12:16

Hi David so sorry to read your blog today, really feel for you as I know all the thoughts that must be going through your head and do hope by the time you read this that you are home and things are better, hopefully the azacitadine will be a success, I've just started my 14th cycle and although some side effects it appears to be working, and and giving me a reasonable quality of life so I pray it will do the same for you, to the other person who sent a message Yes you must ring Sophie asp regards Christina
DAWS9
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Re: Hi and Hello

Post by DAWS9 » 10 Jul 2019 02:29

Apologies for the delay getting back here and thank you for the advice. I did indeed contact Sophie and she was very helpful indeed, I have also now received my information pack which is another bonus.

However I still have no idea of the type of MDS I have and no treatment has been started. With the information from Sophie I have now been back to my GP and asked for him to contact the QE in Birmingham where they have a MDS specialist. I have lost all and any faith I may have had in the Manor Hospital after again seeing a student and that they did a Vit D test and lost the results.

Whilst I am still in full time employment I am finding everyday more and more difficult to focus and the lethargy is worse than ever but I have to go on. I find that as soon as I get home from work and sit down, drink a mug of tea, in no time at all I am asleep. Even though I try to fight it I find I can do nothing to stop it and when I am under the bomb could drop and I would miss it. No matter how much noise around me I am gone. Just this Sunday I had one of the worst days ever with this illness and found I had little or no energy to do anything and slept all day. On Monday I had another B12 injection but still the tiredness continues, roll on the day I receive the referral to the QE. Cannot wait to get some normality back in my life and stop going to bed before my 11 year old. Talking of which we still have not told him anything yet he must be wondering why his dad is going to bed before him and sleeping most of the time!!!

I wish all the very best to everyone on here that is living with this syndrome, may we all experience some normality even if for a short time. Live life to the best of your abilities.
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