Newly diagnosed

[chris]

Well done, you, on getting the decorating done. I sympathise with the paint fumes. I have found that I’m a lot more sensitive to those sort of (probably toxic!) fumes over the past few years. Even household cleaning things I’ve used for years -like Jif/Cif - really turn my stomach?! And I’m asking my husband to stay in the garage if he’s doing glueing or fibreglass repairs. Yuck!

I’m trying VERY hard not to make any snide comment about the awful stress of the multitasking involved in putting together a macaroni cheese!! I think I’ve succeeded!

Take care

Chris

[SHPR4]

Hi everyone
Just started taking some turmeric (experimenting on methods as it’s not easy with the powder) and vitamin C - effervescent from Tesco. My Hb is low but ferritin is high. Just hoping it only reduces the ferritin and not my Hb as some articles (not MDS related) seem to indicate it can lower Hb. Anyone got deeper understanding of this? My diagnosis was only 4 weeks ago so I’m still learning (and worrying).

[chris]

Hello there

Sorry to hear of your very recent MDS diagnosis. It certainly is worrying to receive this diagnosis but with more information and time, the worrying can diminish so I hope you can soon get to that point. It takes a while to build full understanding of this disease and I hope that by now you will have received the MDS patient handbook which will help you learn more about the current range of treatments? Please also browse the website for up-to-date information on the treatment options and types of MDS. Please also think about joining one of our online patient support meetings where you will be able to share your concerns with others who have been through this experience themselves. It helps to not feel so alone.

Whilst it is OK for people to post their personal experiences of taking supplements, they should not recommend them to others and MDS UK cannot endorse or recommend any nutritional advice or supplement that has not been evidenced by sound research. So please note these Forum rules from the General nutrition and supplements topic.

"Forum rules
No promotional materials, no obvious advertising of any products.
Contributors must limit their messages to their own experience and not recommend any supplements to other readers.
MDS UK advises to follow a healthy diet as per our Nutrition Factsheet - and does NOT endorse nor recommend any particular supplements mentioned in the messages below.
MDS patients MUST seek advice from their haematology clinical team before using any supplements."

Sadly, there is very limited research on supplements and MDS. There was a research project at Bart's on the effect of curcumin on a myeloma patient but, of course, it may not apply to other blood cancers or bone marrow diseases.
https://casereports.bmj.com/content/201 ... 016-218148

If you have low-risk MDS and have only recently joined us, you might find the following video useful - presented by Dr Dominic Culligan, from Aberdeen Centre of Excellence and our clinical advisor.
https://mdspatientsupport.org.uk/low-ri ... -patients/

I hope this helps. Have you been told that you will be having any treatment to reduce your ferritin levels? If not, please ask your clinician about this.

I hope you will soon be feeling better informed and less worried about your own particular type of MDS. It is a hugely variable disease.

Take care

Chris

[chris]

Hi again. Just realised I had already responded to you on a different thread! These usernames don't stick in my head the same way as proper names!! At least I've been consistent in my replies!!

Thanks
Chris

[JRHA5]

Hi all my names is james.
Im a newly member off this horrible disease. (Mds) im new to this chat line. In fact this is 1st ive ever been on chat forum. So please bear with me. I was told last week and didnt really take it in or relise it was so serious. I have low red and white blood cells. Plus plantlows. I look forward to reading and hopefully get some good news. Im not sure what to do next really. Do we just wait 4 next blood tests. Does anyone no will a good diet help. Or any suggestion. Im hoping i am low level and hope no treatment. But time will tell. Thanks 4 listening.
James. .

[chris]

Hi James

Welcome to this Chat Forum. So sorry to hear of your very recent diagnosis. All of us who have received this diagnosis are shocked and confused as I don’t think any of us had ever heard of MDS let alone realised the implications.

I hope that you have received the MDS patient handbook which is full of useful information about MDS. Please also look at our website pages on What is MDS.

Aside from the worries we have about the course of the disease, many of us also have a huge sense of isolation as it is such a rare disease and we are unlikely to meet others. To this end, might I suggest you think about coming to one of our online Zoom meetings where you can share your experiences and concerns with others going through similar situations. People cope in different ways but those attending our meetings get a lot of comfort from doing so.

Here is a link to a meeting this week which I am hosting and you would be warmly welcomed.You need to register but it is a simple process.

https://mdspatientsupport.org.uk/events ... splay=list

With all best wishes

Chris

[JRHA5]

Thanks cris
I will try and join the zoom class.
Just a brief bit more off my story. I actullay went on a health kick end off feb. And spent 3 months in thailand on a boot camp. Which was fantastic. I was training 3/4 hours a day. Getting on great. Lost 16 kilos in weight. Felt fittest ever only to come back to the news i had mds. . So was very shocked. Im 59. Fit most off my life.football tennis squash.gym now. But did put on weight as the years went by sadly. Now im down to 90 kilos or 14 stone. I do hope to carry on losing weight and hopefully this might help me fight mds. I am worried about getting the symtoms off fatigue or breathless. Which i take it will b the end off my training. Should people still train with mds. If anymore no.s a suggestion. Kind regards to all. Jay.

[chris]

Hi Jay

Thanks for sharing some more details about your MDS diagnosis. I can imagine how staggering that must have been when you’d lost a lot of weight and been feeling so fit after your Thailand boot camp!

I was also 59 when diagnosed (though it had taken a year!) and, like you, very healthy and fit up to that point in my life. Not happy to find out that it was a disease most common in 70+ year old men!!

Although there is very little research on this, it seems reasonable to think that a healthy diet and as much exercise as your health allows has to be a good thing? Apparently, there is a plan to research lifestyle issues and MDS but still at an early stage.

Have you had a bone marrow biopsy yet? Your clinician should then be able to tell you what your MDS risk group is and what the treatment ( or not) may be. The handbook and website explain this in more detail.

Look forward to seeing you at the meeting if you can make it.

Best wishes

Chris

[JRHA5]

Thanks chris.
Thanks 4 response. Yes i have had a bone marrow biopsy . Ive not yet been told wat my risk level is yet. I was just told carry on with no treatment and lets see what the next bloods checks r. When i left the appointment i didnt relise what mds was so didnt really take it all proply. Im just working out the ?.s i need to ask 4 next appointment now . I hope your doing well chris.
Jay.

[chris]

Hi Jay

Yes, everything goes blank and you cannot even begin to think of questions until you find out a bit more about what you’ve been told.

If it helps, we have a list of possible questions you might want to ask at your next clinician appointment. Clearly you can’t ask ALL of them but you might want to choose some from the list that are important to YOU.

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

Hope that helps you.

Chris