Hi and Hello

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PSRNE30
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Hi and Hello

Postby PSRNE30 » 25 Jul 2018 14:43

Hi I'm Paul,

I am 58, a dad of 2 (8yrs and 2yrs) from Tynemouth in the North East of England.

Around Easter time this year, following a nasty bout of flu which floored me for about 9 days and a 2 stone weight loss my Hb dropped through the floor. After numerous blood tests for a wide array of viruses, fungi, bugs and other things I was referred for a bone marrow biopsy.

The procedure went fine though it did feel like he was trying to suck my right leg out through a very small hole in my pelvis ( this is not usually the case I am told and is purely due to my personal condition). I believe the consultant had his suspicions at that point due to the problematic biopsy. Anyhow approximately 3 weeks later I was given my diagnosis of Hyperfibrotic Myelodysplasia.

Looking back, I recall the consultant mentioning the potential for a 'not so pleasant' outcome during my weekly and then fortnightly visits for blood tests and the two transfusions to date. I think this hardened me for the formal diagnosis and various chats with Professors, Consultants and Doctors regarding a BMT.

So jumping forward to July and some outstanding attention and care by our NHS namely; Rake Lane Hospital, North Tyneside, Northumbria Emergency Specialist Care Cramlington and Northern Centre for Cancer Care Newcastle upon Tyne, Freeman Hospital I have 5 x 10/10 tissue matches and am hoping to receive a proposed transplant date on Monday.

I am experiencing various levels of fatigue on a day to day basis and some 'bone pain' but am still working, albeit reduced hours. I did discover that my DNA markers indicate a Germanic origin which did take some getting used to :shock: ( I think my dad was more concerned about that than the diagnosis :lol: ) .

Anyway, writing this has been therapeutic and I would be happy to chat and share with others who are going through or have been through similar circumstances.

Best wishes to all.
AWOX15
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Re: Hi and Hello

Postby AWOX15 » 28 Jul 2018 19:15

Hi Paul
I read your post a while ago and couldn’t answer your questions. This site deserves better response from people that have MDS and those fortunate to be able to have a bone marrow transplant.
I was expecting to see some kind of response to your email.
There are more people on the Facebook site.
It’s such a personalised illness that it is very difficult to generalise what to read into others experiences.

Sophie, at Kings, whose telephone no. is on this website would be a great person for you to contact and give you further information.

Good luck and I hope you get some answers to your questions.

Regards Alan
christina
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Re: Hi and Hello

Postby christina » 29 Jul 2018 13:17

Hi Paul sorry your going through the old MDS experience, sure it's not easy with work and a young family, however you seem to have a good team treating you and yes I would also advise giving Sophie a ring, the more info you have will give you more understanding, allthe very best
CWDN32
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Re: Hi and Hello

Postby CWDN32 » 13 Aug 2018 23:53

Hi I'm Caroline, I'm 59, I'm in North East England. I have been having appointments with gastroenterology for some time with tummy upsets. One diagnosis I had following a nuclear scan a couple of years ago was a bile malabsorption. I have gone on to have colonoscopy, gastroscopy x4 ct scans, mri scan, but never got to the bottom of my problems. I felt ultimately not being taken seriously of my symptoms of severe nausea and sickness and still diorrhea after intervals of constipation. I'm type 2 diabetic I'm also on medication for mental health, I have copd, but I smoked heavily till I was treated with a severe chest infection 2 and half years ago. I just stopped. But the amount I smoked I still use nrt.
I have been treated for high blood pressure, but recently I had 2 blood tests that showed quite bad anaemia, so further gastroscopy further ct scan, which I'm awaiting the results, but another thing was suggested was a liver biopsy, as it was picked up by my gp some years ago I had enlarged liver, but following ultrasound I also had enlarged spleen.
This was attributed to the high doses of mental health medication for a very long time, so my liver wasn't getting a break, this has been a constant for 7 years posibbly more.
Following my gastroscopy in June I was beginning to feel so ill and shorter of breath than usual oh I also have osteoarthritis, my arms and legs were aching so much I was struggling to eat and drink, eventually 5th July I had to ring my gp surgery, I felt so ill as if I was actually on my way out, a 120 metre walk to the shop I had to stop at least 5 times, and had to take the rest of the day to recover.
The receptionist asked me to go down immediately there was an appointment available right away , I was put on ecg and was tachycardic she went to show Dr, he came to take a look at me, said I was severely anaemic to back in the morning for blood test if as he suspected, my levels down again be prepared to go into hospital.
I had the blood test was told the pathlab or gp would ring me that afternoon, sure enough Dr rang told me to go to surgery straight away to collect paperwork I was being admitted to hospital.
My levels were so low I was started on a transfusion at 3am, I had 3 units, but remained in hospital, I was given a further 2 units so 5 in total in 10 days of my stay, aplastic anaemia was suggested, and bone marrow biopsy, so after discharge I had to return later that week for the biopsy.
I had this done, the specialist nurse was amazing, she was having trouble getting the aspiration, the fluid, but she managed to retrieve bone marrow, it took over an hour, I consequently now have weekly blood tests and been requiring 2 units fortnightly, it wasn't till a week before my diagnosis appointment that I noticed on my discharge notes also mds as probable along with aa aplastic anaemia.
I quickly did some research, my sister came for a chat as she worked in senior roles within the nhs through her career retiring as a pct advisor.
She came to my appointment, and I was diagnosed with mds raeb1, high risk for leukaemia, there are blast cells present, and they wouldn't elaborate on severity, other than they will ring me tomorrow afternoon following multidisciplinary meeting.
It hasn't registered in my brain as really happening to me, through to anger at myself for the years and amount I smoked, but I'm so worried about my future and what it holds, I've a cousin has offered bone marrow donation but I don't even know if at my stage whether it is on the cards to be offered. I'm thanking god I've found this forum maybe someone in here can give me some hope
Sorry for this long explanation but had to share with someone who posibbly understands x ☺
DTUB10
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Re: Hi and Hello

Postby DTUB10 » 20 Aug 2018 23:29

Hello,

My name is David (Age 59) from Uxbridge, West London. I was diagnosed with MDS two weeks ago, after going to A & E with fatigue, palpitations and a bad eye bleed.

The word leukaemia was mentioned after the blood test, which was shattering, so the later diagnosis of MDS didn't seem too bad.

I thought I was facing immediate chemo and months in hospital, so I was pleasantly surprised to be discharged from hospital after a few days and several transfusions of blood and platelets. With further transfusions as an out patient I feel better than I have done for months. so the diagnosis seems unreal.

I am still waiting to hear what type of MDS I have, but my problem is low haemoglobin and low platelets. My only sibling is still waiting for a test pack to see if he is a match.

I was interested to read from previous posts that even when a good match is found, the chemo and transplant are not done automatically. Presumably that is because of the risk involved.

I hope you all keep posting about your progress so that we can support each other on our journey.

David
PSRNE30
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Re: Hi and Hello

Postby PSRNE30 » 21 Aug 2018 12:26

Hi Again,

Paul with Hyper Fibrotic Myelodysplasia

Thank you for the replies and responses. There is some comfort to be gained in knowing that you are experiencing things that others have or are currently experiencing and that there is always someone out there who has been there swallowed the tablet , had the injection and lived to tell the tale.

Since my last post, I have managed to keep the transfusions down to 4 red packs since Easter my Hb drops to around 60 before I feel the need for a top-up. I have become sensitised to low haemoglobin and can function quite well around that mark. Tai Kwon do is a no-no but most everything else is still achievable. I have a confirmed donor match, with my central line being fitted on 19th September and Chemo beginning the following week and transplant on 3rd October! So I am getting my affairs and pyjamas in order. I got married last Thursday (which seems like the sensible thing to do) , visited York and took the children to Flamingo land where my 2 year old daughter met Benjamin Bunny from Peter Rabbit. " Daddy, big rabbit" was her response. Had a lovely couple of days.

One odd thing and I wonder if anyone else has experienced this was a natural increase in Hb. I have blood tests fortnightly and two weeks ago Hb was 74 last week it was up to 85 people say getting married is good for you.... but at a cellular level? possibly not. My consultant could not explain the increase and said if it continues the transplant could be delayed.

I am back in for another BM biopsy tomorrow so I shall have to wait and see.

So to all of you walking the same or similar path: take one step at a time, make the most of everything chin up and have fun.

Wishing all well

Paul
DTUB10
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Re: Hi and Hello

Postby DTUB10 » 22 Aug 2018 17:34

Thanks for the update Paul. I wish you well with your mental and physical preparations for the transplant.

Quality time with the family is so sweet when you are facing the challenge of MDS.

It was interesting to hear about your Hb count increasing.

Can I ask you if the transplant was the only viable option for you?

I am a newcomer to the world of MDS, but I have heard of people lasting for 18 years on transfusions and drug therapy.

Regards

David
(Recently diagnosed)
PSRNE30
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Re: Hi and Hello

Postby PSRNE30 » 23 Aug 2018 11:51

Hi David,

Thank you for the best wishes the same goes to you and the necessary adjustments that have to be made when the devil poos in your pocket!

Yeah the increasing Hb is a bit of an unknown quantity. I had another BM biopsy yesterday and discussed it with my clinician he said it was uncommon. However, certain triggers can rejuvenate cells into action for short bursts of activity. It is not known why or how it occurs but it can happen. Maybe it had something to do with the family being away for the week and me and the Dyson being 'home alone'. Who knows?

I don't know how much background reading you have done or if you prefer not to ( I am formerly a biologist and I am burdened with a 'pain in the backside' need to know and understand how and why from a cellular level upwards) There are many variants of MDS some can be treated with transfusion and associated chelation (removal of excess iron that is introduced into the body with every transplant, and drug therapy) others have a far greater mortality associated with them. Mine happens to be one of the rarer, aggressive variants (Hyper Fibrotic).

I was initially diagnosed at Easter this year and given approx 12 months to play. Since then my ability to function on low Hb and other factors have extended that forecast. The only potential 'cure' of the MDS and relief from bone pain and fatigue (which is not going to improve) is a SCT.

The Consultants were exceptionally clear regarding all outcomes and that this route is the only one that has the potential for extended survival.

So it is important that you gain as much information regarding the type of MDS you have and all the potential forms of treatment. Have you been referred by your GP, have you been appointed a haematologist as they are the people who can answer your questions and provide insight into your further options. I have also been recommended to contact Sophie who I believe has far reaching experience in MDS maybe a chat with her could give some answers.

Kind regards,

Paul
christina
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Re: Hi and Hello

Postby christina » 01 Sep 2018 17:58

Hi Caroline and Paul, all the very best to you, I was diagnosed 2009, had lots of different treatment at Kings which has enabled me to lead a normal active life, so important to keep positive and ask loads of questions, also keep notes of all your counts and medication, enjoy every day and don't put anything off, have no regrets, there is much support and info out there, don't e afraid to ask, all the very best
DTUB10
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Re: Hi and Hello

Postby DTUB10 » 03 Sep 2018 21:31

Hello again Paul,

I will be thinking of you from 19th September onwards, and I look forward to hearing about your recovery in due course.

My children are 19 and 16, so they understand what is happening. I don't know if that is better than having younger children.

I have only spoken to my local haematologist, but I am still waiting for an appointment with a specialist in another hospital. I don't even have a date yet, so I don't even know what type of MDS I have. As a result I still can't work out my prognosis on the IPSS(R) chart, although I know I am at least intermediate risk, because my Hb and platelets are both wonky.

My only brother had a blood test today, so fingers crossed.

Like you I try to understand as much of the science as possible, although perhaps ignorance is better. In the first couple of weeks after diagnosis I was so relieved that I didn't have AML that I more or less convinced myself that it wasn't too bad and that the occasional transfusion would keep me going for another 10 years.

It sounds as though you are getting good care and you have more than one match, which is fantastic. Your age also counts in your favour.

Enjoy your last couple of weeks of freedom before the fun starts.

Regards,

David

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