Hello, unfortunately I've joined this club!

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ISSY22
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Joined: 19 Jul 2019 12:04
Location: North Wales
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Hello, unfortunately I've joined this club!

Post by ISSY22 » 20 Jul 2019 11:53

Hello.

My name is Ian and I have been diagnosed with MDS + RAEB. I am still awaiting the final results of my bone marrow biopsy. I am still coming to terms with this.

My journey so far:

The first indication I had that something might be going on with my blood was in May 2016 as a result of some investigative work on my knee. It was noted that some of my blood levels were low but no undue cause for concern. From March/April 2018 I embarked on a journey with prostate cancer, and after DRE, pills, mpMRI and template biopsy was finally diagnosed in September 2017. I had my treatment, LDR brachytherapy, privately in Guildford and all seemed to be going well. I only had one day in hospital and I was able to drive home to Wales two days later. I just had my 18 month check and my consultant was happy.

In May 2018 I had some pain in my hips - apparently not entirely unusual for brachy patients. I went to my GP who took bloods and sent me off for an MRI on my hips. Hips looked fine but the bloods were low but, once again, not low enough to warrant action. I was told to have another test in 9 months which I duly did and the levels were lower than before; my GP referred me to RSH (Shrewsbury) for further investigation. The appointment took about 3 months to come through and I had almost forgotten about it. I feel fit and well and have had three trips abroad already - one skiing, two paragliding - largely due to me wanting to make the most of life after my encounter with PCa. I play badminton to a good standard and also walk and cycle for my fitness.

From the outset I knew something was up. When I went to the hospital they took my blood and immediately referred me for a bone marrow biopsy. It wasn't really explained to me why I was being sent for the biopsy and when I queried it one of the responses from my consultant was "try not to fall apart in a week" - direct quote! Part of me wishes I'd asked her to leave at that point, but I really wanted to understand what was going on and why, and so I persevered. The nurses were great and we had a bit of a laugh despite the biopsy being excruciating at one point. On 4th July my wife and I attended a meeting where we were given the initial results MDS+RAEB and (I think) less than 5% blasts. They took more blood for tissue typing. The meeting with my consultant was not great and so I didn't get to ask as many questions as I would have liked. I find her manner demeaning and very condescending. She did say that probably my only way out of this would be a bone marrow transplant, but when we asked about what that meant it went downhill fast; she bordered on rudeness to my wife. We are going back in to the hospital on Wednesday, mainly to see if I am OK to go on my summer holiday. We will both go, just in case the results are back.

Right now I still look and feel fine. I perhaps get a little more out of breath when walking up hill, and I have noticed that I pant a bit more after a couple of hours badminton. However, it all feels so surreal. Had it not been picked up by my GP I would not have any reason to go to the Doctor. Emotionally it's a bit of a roller coaster as I am sure many of you will know, but in myself I still feel good overall. It has hit my wife and daughter hardest I think, and sadly we quarrelled - I don't want to her to deny her emotion but it was getting me down seeing her sadness if that makes sense. It rocked my own sense of well-being at first but we walked and talked and I am ok again.

My main concerns right now:

- my complete and utter lack of rapport with my consultant.
- Birmingham has been mentioned for treatment, but if I could stay in Wales without compromising that treatment I would prefer to do that. Cardiff would be much more straightforward for my wife and daughter to get to; Birmingham is 3 trains, Cardiff is one.

There is still a lot we don't know, but writing this has been therapeutic.

Ian
Ian.
Age 61
Diagnosed July 19
christina
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Joined: 07 Mar 2013 11:22
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Re: Hello, unfortunately I've joined this club!

Post by christina » 22 Jul 2019 18:39

Ian I think you would be best to phone Sophie at King's she will give you good advice and many of us have had such good support from her. I have had mds for 10 years and with the expertise and support from Kings and my local hospital I'm doing well, good luck and keep in touch Christina
ISSY22
Posts: 4
Joined: 19 Jul 2019 12:04
Location: North Wales
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Re: Hello, unfortunately I've joined this club!

Post by ISSY22 » 23 Jul 2019 20:26

Dear Christina

Thank you for taking the time out to reply; that's really given me some heart and renewed resolve.

Ian
Ian.
Age 61
Diagnosed July 19
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hello, unfortunately I've joined this club!

Post by chris » 27 Jul 2019 20:51

Hi Ian

So sorry to hear of your diagnosis of MDS. I think most of us would identify closely with your experience of the shock and disbelief when first diagnosed. And, sadly, many of us would have also had difficulty in communication with our consultant too. Some do not seem to be very skilled in breaking bad news in a supportive and kind manner! I was told I had MDS (of which I had never heard) and when I asked how it was spelled, my consultant specifically told me NOT to go Googling it as I would just scare myself but did not then go on to tell me anything more about it! In 2008, there really wasn't much info available on the Internet anyway, so I found it really hard to get ANY decent information - especially as I have a rare sub-group / crossover type disease!!

As Christina suggested, it would be good for you to talk to Sophie regarding the possibility of having your care at an MDS Centre of Excellence. Both Birmingham and Cardiff are such centres but you are right to consider ease and cost of travel for yourself and family members. Sometimes, you can arrange shared care too between your local hospital and the C of Excellence. You also need to consider that, if you start to feel more poorly, you may find travelling very challenging.

I also sympathise that it has been difficult to handle the different responses of you and your wife/daughter. Everybody has their own way and pace of dealing with a difficult diagnosis and you've already been through it all recently with your prostate cancer and treatment. Maybe the more you all get to understand about the future course of the disease and the treatments on offer, you'll arrive "at the same page". Presume you have the latest MDS Patient Handbook as that is a really good source of information? It's a pity that there do not seem to be any Patient Support groups close to you as these can be a great comfort and help people get their head in a better place! If any of you are struggling emotionally at this time, please seek out help from NHS counsellors or Macmillan.

I guess you would have had your biopsy results by now? Hope you were given the OK for your holiday and please also check out the posts on travel insurance on this Forum as that can be a bit of a shock too when you tick the MDS box!

Take care Ian. I'm sure you will feel better about this at some point but it's great that for the moment you are feeling pretty OK and with not too many bothersome symptoms.

best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
ISSY22
Posts: 4
Joined: 19 Jul 2019 12:04
Location: North Wales
Contact:

Re: Hello, unfortunately I've joined this club!

Post by ISSY22 » 13 Aug 2019 22:49

Thank you for your reply.

I had an appointment on 24th July at which I was told that I had a small percentage of leukaemia cells already. I tried to make notes but when I looked back at them they were gobbledegook. Subsequently I had a very long and detailed conversation with an Anthony Nolan nurse, and feel I have a much better understanding of things. On 3rd August I went off for my holiday in France and we had a great time without drama or incident. At the moment, on the whole, I still feel fine which seems to surprise everyone. I swam a lot on holiday and last evening did my local hill walk of just over 3.5 miles in a good time. I do have good days and bad days energy wise and the odd occasion where I feel a bit like a wet rag, but most of the time my energy levels are good. I don't sleep well - never have done and wish I could.

Tomorrow, 14th August, we have another appointment with my consultant. I feel better prepared for this one. I am going to ask for a copy of my notes too.

I'll update after tomorrows meeting.
Ian
Ian.
Age 61
Diagnosed July 19
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Hello, unfortunately I've joined this club!

Post by chris » 13 Aug 2019 23:32

Dear Ian
Hope it goes well tomorrow in terms of information gathering and better communication. Good for you for having such a lovely and active holiday in France and for persisting in walking up hills!!
If you're still unsure about anything after tomorrow, do give Sophie a ring as she is very knowledgeable about MDS in all its forms. And she can also advise on referrals to Centres of Excellence.

Take care

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
DTUB10
Posts: 18
Joined: 20 Aug 2018 14:00
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Re: Hello, unfortunately I've joined this club!

Post by DTUB10 » 27 Aug 2019 23:20

Sorry to have to welcome you to the club you least wanted to join, but now you are one of us.

Keep us informed about your journey and we will try to support you as best we can.

Incidentally when I was in Hammersmith Hospital, London, in February this year, there was a patient from Swansea having a bone marrow transplant at the same time. His wife stayed in a hospital apartment.

I can assure you that when you meet a haematology consultant at a hospital with a transplant unit, they will explain everything in as much detail as you want.
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.
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