MDS

Hi and welcome to the community, I am sorry you have bot been able to contact anyone caring for someone with MDS as I see it is a rare form of cancer from the information here, rare forms of cancer I can relate to as my wife has Leiomyosarcoma.

We have been living with cancer now for six years, Janice has had two rounds of chemotherapy and it has rendered the cancer stable, oncologists are so pleased we only now have a check up every nine months. In the early days I struggled and recognise a lot of information in I'm looking after someone with cancer and how it applied to me, remembering to look after ourselves is easier to say than do sometimes.

<<hugs>>

Steve

Hiya Steve,

thankyou so much for contactng me,it is hard for caring as it is for the patient.

Sorry to hear of your wife,hope she carries on as best she can,we dont know if John will start Chemo again in September as bloods have been so low they stopped it in May.

hugs to you both

Joan

Hello Samelia 

My husband has a similar condition and has just received a stem cell transplant. Am happy to chat and share our experience of these more unusual cancers. Learning myself as I go along !

J

Thankyou for replying, hope your Husband is going in the right direction.

Unfortunaley my Husband is to old to have stem cell ,he is 77.would love to chat to you feel so isolated.

look forward to hearing from you.

My mum was diagnosed with MDS Christmas eve 2019.She was given a treatment plan of chemo injections and blood transfusions when needed. She had one round of the injections but last week when seeing the consultant he told her she was high risk and it would be months rather than years.

Needless to say we are all in shock.

She has an appointment with the palliative care on Wednesday. My brother and I would like to go with her but she is saying she doesnt want us there but my dad does. We are devastated as we want to support her and also have questions.

So sorry to hear your news, I have been nursing my Husband with this for 4 years and now is rapidly getting worse.We had a meeing with the Consultant on Friday and all Chemo stopped and blood transfusions weekly has just come out of hospital with Sepsis the 4th time.if I ou could get Mum to let you go it would be good if ou could all go as you could ask questions,our Consultant asked for the whole family I do know what you are going  through, just one day at a time.Pleaseif you want to chat I am always here.

Xxx

Its a minefield of uncertainty. Thank you for your support.