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Hi Mark – sorry to hear about your diagnosis. I’m 47 and was diagnosed with MDS about 3 years ago (and am also a Curler!). Because of the low Haemoglobin levels in my case I haven’t been able to do sustained cardio exercise – I used to be a long distance runner, marathons and long trail runs, mountain biking etc but can’t anymore. I retired from curling last year – I was on the Australian National Team for 19 years but couldn’t travel and compete at a world class level anymore. For exercise now it’s more about doing some weights at home, on the spin bike, walking the dog. I wish I had my fitness like I used to for sure. How the disease affects each person is different – some people have MDS that don’t require blood transfusions because their counts are slightly low, other people do because their counts are too low and are more impacted for physical activities.
If you eventually need a Bone Marrow Transplant yes a sibling is generally the first option to investigate for a donor – I have 2 siblings but neither were a match for me. There is an international database of 22.5 million possible donors – they will do a search on that database to try to find a match. I believe if you are a white male with European ancestry, there is an 85% chance of a match in the database. For me – there was no match with my siblings nor the database. We are going to use my daughter as my donor – who by definition is a half match to me and can be used as a donor.
As others have mentioned, keep reading and learning about MDS – you will feel better the more you learn about it. Another good site is https://www.aamds.org they have a lot of resources (articles, ebooks, videos, and regular webinars) to inform you and keep you up to date on any new developments in treatments etc.
Due to my MDS I have been transfusion dependent for almost 3 years (135 units of Red Blood Cells to date) and I have an enlarged spleen – it’s quite big at 30cm in length, it extends down past my midline and under my belly button. I’ve only noticed the large spleen physically for the past 5 months or so – it has grown a lot in that time. Over a period of about 2 months it went from 24cm to 30 cm. I am currently on Azacitidine (Vidaza) in hopes it will temporarily better my blood cells and counts and hence reduce my spleen size before undergoing a Bone Marrow Transplant. If the drug does not work, my spleen will need to be surgically removed before I can be scheduled for the BMT.
With MDS blood counts for me seem to go all over the place. 8 months ago my Platelet count was very high at 900 (looks like you might call this 900,000 wherever you are). Now my platelets are dropping fast – and are down to 30 (or 30,000). Dr is hoping this stabilises soon – as it can’t drop much lower. I’m losing abuot 10,000 in count every 2 weeks.
I’m an MDS patient, and know that if I drink alchohol that my heart rate goes up significantly – I’m not sure why. Just my body struggling to process the alcohol in some way. So I don’t drink much anymore – but do like to enjoy a glass of wine or a beer maybe once a week now.
The active drug in Exjade and Jadenu are the same. Jadenu is generally easier to take in tablet form – rather than disolving in liquid like Exjade. Jadenu is also a bit easier on your stomach with less restrictions compared to Exjade with respect to not eating near the time of Exjade. You can even take Jadenu with a small/low fat meal. From my understanding the drug equivalence is 500mg of Exjade = 360mg of Jadenu. I’ve taken both Exjade and Jadenu… and Jadenu is more straightforward to take and hence easier to be compliant.
How you feel at different Hb levels will be unique to you. I’ve had low HB for a couple of years and generally tolerate it fairly well. I feel pretty lousy when I’m low 5 or high 4’s. Ideally for me I feel good and normal for everyday activity if I’m above 6. I get 3 units every 3 weeks – and I’m usually mid 5’s or 6 on average for my cross match test the day before transfusion.
Hi I’ve had about 85 units of packed red blood cells transfused over the past 2 years. When my Ferritin got to 1000 they tried me on Exjade – which I had a severe reaction to causing rash, swelling and fever. Months later we tried a Jadenu tablet and I had the same reaction (though not amass severe). The active drug in exjade and Jadenu are the same – deferasirox. My Ferritin was at 2200 when I was put on a program of starting with a miniscule dose and gradually increased it over a month or so to get to a single 360mg dose of Jadenu. There has been swelling and pain of my wrists and hands, and what feels like arthritis. But I’m keeping on the Jadenu and am now 6 weeks in on the full dose – so I don’t expect much change yet from my last tested level of 2200.
Hi Amy – I’m a 46 year old with MDS and TP53 mutation – transfusion dependant, 3 units every 3 weeks. The TP53 mutation increases the risk in a group of patients and doesn’t necessarily mean any one patient will have lower life expectancy. For me, other than the TP53 I’m lowish risk so it is a watch and wait scenario for me to make the decision for a Stem Cell Transplant. For now the transplant is riskier than the current treatment of RBC transfusions.
Hi Marcy – I am also transfusion dependant for the past 18 months. I receive 3 units every 3 weeks – usually when my hgb gets down to 5.5 or so. The 3 units probably gets me back up to about 8.0 after transfusion. I do not have any symptoms related to sore teeth or troubles with eyes. If your symptoms are related to transfusions I can only guess it might be related to iron overload which can damage some organs (usually heart, liver, kidneys)