Anymore U 50'S out there ?

Moderator: Steering Committee

Wba man
Posts: 6
Joined: 08 Nov 2013 15:05
Contact:

Anymore U 50'S out there ?

Post by Wba man » 21 Nov 2013 22:20

Was diagnosed with MDS RARS, low risk, 3 months ago. This time last year I was refereeing 3 sometimes 4 football games a week, coaching 2 football teams and felt as fit as a fiddle. In comes 2013, energy levels drop, recovering after a game was taking longer and I knew something was not quite right. Many tests for this, that and the other for 4 months after being diagnosed as anaemic, then finally a bone marrow biopsy revealing the confusing world of MDS. My Hg levels have risen slightly since having 4 lots of EPO injections, but still I am frustrated that my energy levels have not returned. Has anyone else out there experienced their Hg rising but no extra energy ? Would also like to hear from any younger sufferers with this RARS diagnosis to compare notes. I remain positive and set aims, the first being to referee a football game before the end of this season. Oh and just as if the MDS diagnosis was not enough, I have been told today that I have to have a hernia op in Jan14.
51Year Old Male - MDS RARS - Still low energy levels, aches & pains. Still confused with the problem but try to remain positive
christina
Posts: 95
Joined: 07 Mar 2013 11:22
Contact:

Re: Anymore U 50'S out there ?

Post by christina » 23 Nov 2013 14:36

Hi Christina here, Yes I was diagnosed low risk 2009 and at first just had blood transfusions, then I was referred to Kings where I was put on Darbepoietin and GCSF which I injected myself once a week, this worked for nearly a year and in that time I was able to travel overseas to visit my daughters having blood tests at thier hospital, however my Hb started to fall again in April even with the drugs so I then had to have transfusions again, so although still having them fornightly I am now on Revlimid, just going into my third cycle and also still on the GCSF but not the Darbepoietin. My Hb went as low as 6 in October and that was very hard, its now 10.1 the best I have been since this time last year, whether its the transfusions or the drug kicking I'm not sure, hopefully its the drug and that will mean I can do without the transfusions. I understand what you are asking as some people feel fine at Hb 8 while others still feel tired at !0, why is this I'm not sure but I didn't realise how bad I felt until i was up again at 10.1. I think quality of life is important for low risk people so maybe its also down to our stamia, i have always done a lot and still if the weather is decent will play golf and i walk a lot, but it does seem that we all feel different at different levels.
Are you under Kings who will answer all these questions for you, they are so supportive, am sure you will also get loads of posts on this so i will look out for others comments. Good luck with the football, my grandsons are all rugby, all blacks in New Zealand and two here one of which has just been selected for the Harliquins, so very proud of him, Best Wishes Christina
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Anymore U 50'S out there ?

Post by chris » 25 Nov 2013 18:04

Hi Wba man

Yes, it is a bit of a blow to people who are (a) young and (b) very fit to come to terms with a diagnosis of MDS - more so than if you are older and used to not being so energetic! As Christina says, the numbers re the Hb count may not mean much - it's how the individual copes with lowered levels which is key.

Make sure the hernia op people are aware of your MDS as they may need to take more precautions. Is it only your red blood cells affected? There is a very good leaflet on fatigue on this website as you may find it helpful to learn tips on pacing yourself and conserving energy and do call Sophie for any other information about MDS.

Hope the op goes well.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
lynn1963

Re: Anymore U 50'S out there ?

Post by lynn1963 » 25 Nov 2013 20:34

Hello WBA man, I am 50 and have had MDS RARS since I was 17 which admittedly is quite rare. I receive blood transfusions every 4 weeks and am currently on GCSF and EPO which do not appear to be working. Even after I have had blood I still feel very tired still so you are not alone. I have had to change my lifestyle to deal with the illness and this seems to work well for me now. Please email me if I can be of further help :D
Wba man
Posts: 6
Joined: 08 Nov 2013 15:05
Contact:

Re: Anymore U 50'S out there ?

Post by Wba man » 27 Nov 2013 22:08

Thank you for your replies, I have emailed a reply to all of you who posted. I have another hospital appointment on Friday and will post on here on how the EPO is doing.
One question to all.
Does the cooler / damper weather affect your energy levels ?
51Year Old Male - MDS RARS - Still low energy levels, aches & pains. Still confused with the problem but try to remain positive
Wba man
Posts: 6
Joined: 08 Nov 2013 15:05
Contact:

Re: Anymore U 50'S out there ?

Post by Wba man » 04 Feb 2014 21:53

Well 2 months since my last post. Still no more energy & very frustrating. Consultant decided to stop EPO injections for a while as I was getting terrible headaches & he thought this maybe the reason, even though my blood pressure was nigh on perfect. Hg levels crept up initially to 11.3 but 2 weeks ago had dropped to 10.7. Recovering well from hernia operation which I undertook on Jan 23rd and went well ( still obviously a little sore from this ). My Hg at 10.7 is low but far better than some readings I have noticed on the forum. Very frustrating that energy levels just don't seem to be getting any better. Obviously I still try to get on with as much as possible but frustrating things just don't seem to be getting any better. Next appointment not until end of March.
51Year Old Male - MDS RARS - Still low energy levels, aches & pains. Still confused with the problem but try to remain positive
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Anymore U 50'S out there ?

Post by chris » 12 Feb 2014 17:43

Dear Wba Man

Hope your headaches have now improved after stopping the EPO? It must be so frustrating to not have much energy. Wondered if you might be able to make some life changes so that you could conserve energy - things like going to bed earlier or reducing your football commitments? It must be tempting to try to keep things going as they were and "work through it " but you have a valid reason for your reduced energy levels and determination alone is not going to change that - unfortunately. Because your life was so active before, you are really feeling the difference in energy levels - more so than somebody who was relatively inactive.

Good that you have recovered so well from the hernia op - though no doubt that will have had an effect on your body in the recovery process.

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Wba man
Posts: 6
Joined: 08 Nov 2013 15:05
Contact:

Re: Anymore U 50'S out there ?

Post by Wba man » 06 Apr 2014 19:33

Latest appointment showed that Hg had dropped again, this time to 10.2. Weekly injections of EPO for 6 weeks and then take it from there. Fingers crossed the EPO will sort the dropping levels & maybe give me a bit of a kick. Still working & still positive, but feel sometimes like everything is a waiting game. I suppose I have been in a bit of denial, thinking the whole thing may just go away, but looks like it is here to stay. Determined to do some refereeing next football season as that is what I have missed most lately. So just need to get on with life and it enjoy it to the full and what will be will be.
Happiness & good health to all.
Simon
51Year Old Male - MDS RARS - Still low energy levels, aches & pains. Still confused with the problem but try to remain positive
Magsa13
Posts: 4
Joined: 17 Apr 2014 15:26
Contact:

Re: Anymore U 50'S out there ?

Post by Magsa13 » 22 Apr 2014 10:06

Hi there. I was diagnosed with mds at the beginning of March and am now waiting for a donor to be found so I can have a bone marrow transplant. I had acute myeloid leukaemia (AML) in 2011 and went through 4 rounds of chemo and went into remission but obviously my bone marrow had other ideas and I've now got mds - it hasn't developed into full aml (yet). I am 45 years old and have got 2 teenage boys at home so this is obviously going to be a massive challenge for us all to face.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Anymore U 50'S out there ?

Post by chris » 25 Apr 2014 16:51

Hi there

So sorry to hear about your secondary MDS. So upsetting to have got over the AML and now be faced with MDS. Hope you have good news soon about a donor for the stem cell transplant and I wish you well with everything.

best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest