Newly diagnosed

[AFWA6]

Hi All

My name is Andy and I’m 63 years old and today I received confirmation of my diagnosis.

How did I get here? In early June I contracted Covid and didn’t test negative until 23/24th June. By then my symptoms were typical I believed. Dizziness, loss of taste, breathlessness, chronic fatigue, uncontrollable shivering even though outside temps were plus 30C. A telephone consultation with my Doctor determined I was still suffering with Covid and he advised doing nothing for the time being. Two weeks later I persuaded the Doctor to get my blood tested. Lo and behold I was suffering with “significant anaemia”. I was admitted to hospital and received blood transfusions over the next few days. Things were happening quickly and a number of tests and scans were undertaken including a sample of bone marrow. Fast forward a few weeks and it is now confirmed that I have MDS. My blood levels have crept up but I’m not where I should be but I’ll take that improvement for now. I’ve not had any blood or B12 jabs for 5 weeks now and although my symptoms of breathlessness and fatigue are milder than before I do find that they limit my activities in comparison to before. During May I went touring to France on my motorcycle for 8 days without a hint of tiredness or fatigue. I often covered 250 miles a day and never needed to stop and rest. I felt great. 3 weeks later it’s like I’d stepped off a cliff!

I await the results of some further tests but my Doctor suggests that I’m “Low risk” and I will be monitored for now. My research and learning is only just beginning but I’m grateful for the acceptance onto this forum. I shall read as much as I can before asking for further advice. Best wishes, Andy

[chris]

Hi Andy

Welcome to the MDS Chat Forum. I always feel conflicted saying that, as I'm sure most of our members rather wish they hadn't had to join it! You've come to the right place as MDS UK is the only UK charity which supports exclusively MDS and CMML patients (a disease similar to MDS). We know the real life experiences of our members and the challenges the disease presents.

I would imagine that your undiagnosed MDS would have played a part in extending the duration and severity of Covid but, in many ways, thank goodness you persisted with your GP to get a blood test which has now led to your diagnosis of MDS. The onset of your fatigue and breathlessness symptoms must indeed have felt like falling off a cliff edge, compared to the energy you had just a few weeks before. If you have any access to older blood tests, it might be interesting to have a look though, as some people find that their blood counts had actually been out of normal range for some time?

I hope that being able to post an entry on this Forum means that you are now a member of MDS UK? As such, you will receive our very useful MDS Handbook which is full of helpful information and a good starting point for sound information about the disease and all its variations. You will also get a monthly e-newsletter and other special mailings if any significant or urgent news comes out between newsletters. We also host a series of online support meetings on Zoom - which Covid has necessitated as so many of our members are extremely vulnerable to Covid and vaccine effectiveness for us is still unclear. Just check on the patient meetings page for detail of the next meeting and register to join us. The next one is 13th September,open to all and hosted by our Midlands Patient Support Ambassador. I'll be at that meeting so it would be good to meet you.

https://mdspatientsupport.org.uk/event/ ... ationwide/

I am so pleased to hear that your doctor has said you have a low risk (this means a low risk of your disease progressing to Acute Myeloid Leukaemia) and that you need no active treatment for now. Some people feel it is very strange and feel quite anxious about being diagnosed with a disease and then told they do not need treatment just yet; but, as somebody who has been monitored for 14 years and never had any treatment, I would say that, for me, this has been a good "place to be" and I'm very grateful for that!!

When you next have a meeting with your haematologist, you might find it useful to have a look at this question prompt list and pick out any questions that you consider important.

https://mdspatientsupport.org.uk/questi ... -patients/

Do have a read of the guidance on how to use this Forum. Our IT support volunteer has posted some very helpful tips.

viewforum.php?f=3

Thanks for posting, Andy. Hope you find our group supportive and helpful.

Best wishes

Chris

[AFWA6]

Hi Chris

Thank you for the warm welcome and I’m encouraged by your support. I joined MDS UK this afternoon

I’ve put a note on my fridge regarding the meeting on the 13th and hopefully will be able to attend.

Andy

[chris]

Hi Andy
That’s great. You have to register to join the meeting and then you receive the Join meeting link. Because my fridge is not magnetic, and my memory is shot (!), I register for meetings as soon as I know about them and that way you get a reminder the day before. If you find you cannot attend on the day, it really doesn’t matter.

Take care

Chris

[RUSE7]

Hi Andy,
Welcome! Sorry you had to join us, but you've landed in a great place for support with MDS.
Like you, I'm low risk. When I was diagnosed my haemoglobin was down at 88 and I was really suffering from breathlessness and fatigue and was having little black out moments that happened at the most inopportune times. I had a 3 week trip to Asia planned and needed to cancel it as my blood results came back 3 days before we were meant to fly and I had to stay home to get all the elimination tests done (colonoscopy and gastroscopy). Finally had the bone marrow biopsy done (they're fun right ) and got my diagnosis and was put onto EPO to boost blood production. I never had to have a transfusion though so wondering how low yours was when you were diagnosed.
They're been treating me successfully with EPO for the last 4 years and haemoglobin counts are back up to around 115, so still a little on the low side, but the docs are pretty happy and I'm feeling a lot better than I was.
When is your next consultant visit?
All the best,
Ronnie

[AFWA6]

Hi Ronnie, Sorry for the delay in replying I’ve only just read your post.

As it stands, based on my last bloods last week, I’ve maintained my reds at around 100 and platelets have increased from 50, to 100, to 115 last week.

On being admitted to hospital my bloods were 74 (reds) and 50 (platelets) so the transfusions were essential. I felt much better afterwards. My diagnosis was determined after a nasty bout of Covid. My jabs were up to date but the Covid symptoms were severe. They then morphed into something else and I knew something was wrong. I’ve not had any treatment intervention for 6 weeks now and feel ok most of the time. Breathlessness and fatigue are still a feature but less so than 6 weeks ago. I’ve begun doing some gentle walking to regain some strength and fitness.

My next appointment is next Tuesday and hopefully I’m maintaining things or perhaps the slight upward trend continues.

Prior to Covid I considered myself to be above average fitness for someone in their 60’s and I’d enjoyed good health for all my life. I tested positive on the 8th June and I’ve never felt so ill before. Whether there’s a link or contributing factor here with MDS I couldn’t say but I have read of other circumstances where Covid has reduced levels of reds and vitamin B12. In fact WHO are recommending that GP’s test for B12 deficiency in patients post Covid.

For now I’m doing ok and trying to learn as much as I can about MDS and hopefully regain something like acceptable strength and fitness.

Best wishes

Andy

[RUSE7]

74 is low! Not surprised they gave you a transfusion. Let us know how you go at your next appointment and how they decide to take things forward.

Might just be a coincidence with your low bloods happening at the same time as Covid, although who really knows what Covid does to our bodies. I imagine that your bone marrow biopsy would have shown some irregularities, so I would guess MDS has been brewing for a bit and maybe the covid just exacerbated it. Dreadful timing. It does knock you around that's for sure. I still haven't had it, but hubby got it about 3 months ago and thinks he is only just coming back to full gym fitness. His stamina has been impacted for months.

Well keep on with the exercise and I hope the breathlessness and fatigue aren't too unmanageable. The fatigue is still a bit of problem for me some days, even when my blood counts are good. I think that's something I've just learned to live with. Many people say that exercising makes them feel more energised, so keep it up!

Take care,
Ronnie

[AFWA6]

Hi

Further to my latest appointment my blood levels have roughly been maintained at the level they were a fortnight ago. So no further treatment at this stage. However, I’ve been prescribed 5mg of Folic Acid per day for the time being. Maybe it’ll help? Has anyone else been prescribed Folic Acid? And, no, I’m not pregnant

Anyway, I’ve also been referred to a Specialist in Liverpool for further investigation and consideration for a transplant. The Specialist is reluctant to categorically diagnose MDS at this time having studied my notes. He has expressed some caution at this point and needs to understand why my blood levels are at odds with the initial MDS diagnosis. The Haematologist that I’m under at Chester believes the diagnosis is correct but accepts that further investigation is the cautious way forward. It’s a bit of a roller coaster I suppose but I’m sure they’ll get to the bottom of this in time.

Otherwise I’m feeling fine. I’ve continued to walk each day (1 mile today) without major breathlessness or distress. Yes I get tired but nowhere near as much as I did 5/6 weeks ago. Lifting heavy things and bending or stooping are the worst. Carrying a heavy basket of washing upstairs takes some effort and I’ll sit for a minute afterwards but recover quite quickly.

Overall I’m doing well and certainly feel better than I did.

Best wishes

Andy

[chris]

Hi Andy

Glad to hear that your blood counts have remained roughly the same as 2 weeks ago. And that you’re feeling better than a while ago. That’s a relief!

I’ve not heard of folic acid being prescribed for MDS -though maybe, along with Vitamin B12, it would be used to treat other types of anaemia? Would it be possible to ask your doctor if he had found any indication that you were deficient in folic acid? Or what the rationale behind the prescription is?

Also I agree it’s good to get an additional opinion from an MDS specialist in Liverpool. It sounds as though there may still be a question mark over your diagnosis so it’s best to get that absolutely agreed before intensive treatment such as a stem cell transplant is pursued.

Thanks for updating us. Hope you don’t have to wait too long for an appointment with the specialist!

Best wishes

Chris

[AFWA6]

Hi All

I’m pleased to report my Hb levels have continued to be maintained since my last tests. In fact there’s been a slight increase to 104 which I’m pleased about. Other than the folic acid that I’ve been taking I’m thankfully not receiving any other treatment. Since receiving blood in late July my overall condition has improved gradually. I feel a lot stronger now and I’m walking over one mile two or three times a week. Stairs and heavy objects remain a challenge but I recover much quicker than just a few weeks ago. As a result I’m now reporting to Chester for blood tests every 4 weeks.

I’m also under Dr. Toth at the Clatterbridge Cancer Centre in Liverpool. I had my first appointment with him in early October. It was a lengthy consultation, 90 minutes, and I found it very useful. He explained in detail my condition and the process associated with a transplant, not that I need that level of intervention for now. Covid came up during the consultation. My condition was exacerbated by Covid, I was unaware of my condition with no symptoms before Covid, and Dr. Toth explained in detail how Covid symptoms can persist for some time after infection and whilst they are not necessarily diagnosed as Long Covid symptoms can take time to overcome.

I accept that I’ll never regain the level of strength and stamina that I enjoyed before but I’m encouraged because I do feel much better over the last 12 weeks. In addition the longer I can go without any further treatment the happier I’ll be. Fingers crossed.

Andy