Newly diagnosed

[chris]

Hi Andy. That’s great news. Glad you’ve had your additional opinion and a good long session with your consultant at Liverpool. Presume that you have now had a firm confirmation/ diagnosis of MDS? Have you been told what your MDS sub-type is and whether any abnormal chromosomes or mutations have been found following your bone marrow biopsy? This information is very important regarding how your MDS might develop in future. But, for now, it’s really great that your haemoglobin has recovered and you’re not needing any treatment.

There is a Scotland ambassador-led Zoom meeting at the end ofNovember discussing low-risk MDS with Dr Dominic Cullugan and the Bournemouth Ambassador-led meeting on 9th November has Dr Austin KULASEKARARAJ from Kings who will answer general questions. So do book in for those.

Take care

Chris

[AFWA6]

Hi Chris

I shall be attending Novembers meeting, I have registered today

Further to my second bone marrow biopsy I do have confirmation that I have MDS. However, the sub group has still not been determined. I’m to have a third sample taken at my next appointment in early December. I have been told that I have “no bad genes” based upon the second sample but apparently it was a poor sample and further investigation will be required.

Andy

[chris]

Hi Andy

I’ll see you at the meeting (s)!

Good news about not having any “bad genes” but sorry to hear the sample wasn’t adequate and that you have to have another biopsy to get a clearer picture, including your MDS sub-type. Not my favourite procedure (understatement!) and it can be very variable in my experience -depending on who does it!!

Not too long to wait. Keep up the gentle walking and enjoy this balmy Autumn weather.Glorious down here in the South East corner so lots of allotment and garden jobs getting finished!!

Best wishes

Chris

[AFWA6]

Apologies for this post it’s a bit self indulgent but I’d just like to record my latest steps back to fitness or thereabouts. As stated some time ago and after months of inactivity, Covid plus MDS, I completed my target to walk the 2.5 miles from Helsby to Frodsham this morning. I’m feeling very pleased with myself as I hoped to achieve this by the end of December and to complete it now when 12 weeks ago I couldn’t walk 25 yds without nearly collapsing is a great step forward. Mind you my incentive was a whacking big chunk of home made caramel cake and coffee in the Cottage Tea Shop! I still have some cramp like feelings in my legs but less so than before. I’m heading in the right direction at least.

More seriously I’m feeling stronger and a bit fitter. I’ve not had a blood test for 4 weeks now, due next Tuesday, and my symptoms have diminished quite a bit. As likely as any physiological improvement I’ve learned how to manage things better and since the beginning of October I’ve completed a symptom diary on a daily basis. I’m hoping my Hb levels have been maintained, 104 at the last count, but the diary has helped to identify that one of the most important factors for me is the importance of a good night’s sleep. In addition I have started taking high strength vitamin C, picked this up from the Bournemouth meeting, and whilst I can’t categorically say it’s helping I do feel a bit brighter. It can’t do any harm anyway.

Best wishes to everyone and hopefully see you at the next meeting, Andy

[chris]

Hi Andy
Not self-indulgent at all. It’s great to be able to share some good news and reflect on how much you’ve improved in your fitness since your bad bout of Covid and MDS diagnosis. And congrats on achieving your aim of a good long walk well ahead of your target date!! That caramel cake incentive seems to have worked wonders!! And recognising the importance of having a good night’s sleep. I understand that helps your immune system, so sleep away! I always thought that people were supposed to need less sleep as they got older and I thought I’d be up with the lark when I retired but strangely that hasn’t happened to me!

Hope your results from Tuesday show maintenance or improvement to your Hb levels. Looking forward to hearing Dominic Culligan speaking on Monday at the meeting hosted by our lovely Scotland group ambassador, Maureen. Remember to get your questions ready. I’d be interested in his view on folic acid as I’ve never heard of it as an MDS treatment? There was also something mentioned at the recent meeting of haematologists at the UK MDS Forum about Vitamin C being useful for people with MDS who had particular mutations. But I can’t remember which one it was!

See you on Monday. Have a good weekend
Chris

[chris]

Remembered! It is the TET2 mutation!

See this article on the website

viewtopic.php?f=26&t=670

Chris

[chris]

Don’t know what happened there?! Here is correct link!

https://mdspatientsupport.org.uk/vitami ... -properly/

Chris

[Devjon]

Apologies for this post it’s a bit self indulgent but I’d just like to record my latest steps back to fitness or thereabouts. As stated some time ago and after months of inactivity, Covid plus MDS, I completed my target to walk the 2.5 miles from Helsby to Frodsham this morning. I’m feeling very pleased with myself as I hoped to achieve this by the end of December and to complete it now when 12 weeks ago I couldn’t walk 25 yds without nearly collapsing is a great step forward. Mind you my incentive was a whacking big chunk of home made caramel cake and coffee in the Cottage Tea Shop! I still have some cramp like feelings in my legs but less so than before. I’m heading in the right direction at least.

More seriously I’m feeling stronger and a bit fitter. I’ve not had a blood test for 4 weeks now, due next Tuesday, and my symptoms have diminished quite a bit. As likely as any physiological improvement I’ve learned how to manage things better and since the beginning of October I’ve completed a symptom diary on a daily basis. I’m hoping my Hb levels have been maintained, 104 at the last count, but the diary has helped to identify that one of the most important factors for me is the importance of a good night’s sleep. In addition I have started taking high strength vitamin C, picked this up from the Bournemouth meeting, and whilst I can’t categorically say it’s helping I do feel a bit brighter. It can’t do any harm anyway.

Best wishes to everyone and hopefully see you at the next meeting, Andy

Hi Andy,
Kevin here, just wanted to say that it's great to hear that you are feeling a bit brighter, stronger and fitter. I too like to have a bit of a reward as motivation, my reward isn't caramel cake though, it's a cinnamon swirl that is sold at a small bakers shop in Wimborne. If I've been extra diligent and managed a loop along the banks of the Stour then I pop into the Tap House for a pint to help me rehydrate .
Next year will see me ten years post diagnosis and I'm still well. I've been taking the Vitamin C together with Turmeric for a little over three months and do feel that my batteries recharge more rapidly, and i have fewer episodes of exhaustion. As you say, it can't do any harm and the " Thrive " own brand effervescent tablets that they sell in Waitrose are a bargain at £1.40 for a tube of 20.
All the very best, and I hope your improvement continues.

Kevin

[chris]

Other brands are available!!

Good to hear you’re both doing so well and out supporting local bakeries and cafes!! And breweries, Kevin! We’re very lucky to be feeling so well, aren’t we?

Chris

[Devjon]

Other brands are available!!

Good to hear you’re both doing so well and out supporting local bakeries and cafes!! And breweries, Kevin! We’re very lucky to be feeling so well, aren’t we?

Chris

Very lucky indeed Chris! I've been decorating while my Wife Ros was up in Geordie land doing some research for the course she's doing. Four days of moving furniture and fittings as well as painting left me wiped out, and although I had the doors and windows open the paint fumes really got to my chest and throat. I wear a Garmin watch and it does an excellent job of monitoring my sleep patterns as well as heart rate, respiration and stress levels throughout the day. A couple of weeks ago I was making Macaroni Cheese, I had the pasta in one pan, making a rich cheese sauce in another and stirring in some Marmite and cayenne into the mix while preparing some garlic bread. My watch vibrated and a message came up on the screen " You appear to be stressed, would you like to do a breathing exercise? "