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Written by Kate Vahl
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Written by Kate Vahl
Written by Kate Vahl
September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.
#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (particularly Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.
A complete blood count can determine if further action is required. So if patients report feeling breathless after a small amount of exertion, #ThinkMDS and #OrderaBloodCount
A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. #OrderaBloodCount
Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells. Symptoms vary from person to person and depend on which blood cells are low. About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.
As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.
Written by Kate Vahl
September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.
#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (and Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.
Bruising easily is one of the signs of MDS, myelodysplastic syndromes, a group of rare blood cancers. A complete blood count can determine if further action is required. So if patients report bruising easily, #ThinkMDS and #OrderaBloodCount
A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. #OrderaBloodCount
Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells. Symptoms vary from person to person and depend on which blood cells are low. About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.
As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.
Written by Kate Vahl
September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.
#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (and Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.
A complete blood count can determine if further action is required. So if patients report feeling tired all the time and lack in energy, #ThinkMDS and #OrderaBloodCount
A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. #OrderaBloodCount
Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells. Symptoms vary from person to person and depend on which blood cells are low. About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.
As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.
Written by Kate Vahl
On August 25th 2022, Dr Victoria Potter, Consultant Haematologist & Michelle Kenyon, Clinical Nurse Specialist, from King’s College Hospital, led a session on stem cell transplantation to a large group of MDS UK patients.
Below is a recording of this fantastically valuable session chaired by Chris Dugmore, Essex Group Coordinator, Volunteer & Volunteer Coordinator with MDS UK.
The session starts with an overview of the issues involved in stem cell transplantation followed by a Q&A between specialists and patients. The recording is approximately 1hr 50m and has invaluable information and support for those considering a transplant.
"I just wanted to say how good the 'Stem Cell Transplant' zoom meeting was today. Excellent facilitation by Chris Dugmore and the medical staff from Kings were really good, explaining things very easily and clearly. This was a much needed topic and personally I think it should be a topic that is covered on a regular basis as there is definitely an audience for it."
"Re the 'Stem Cell Transplant' meeting, I just wanted to thank you for organising such a brilliant meeting and for chairing it so efficiently."
"Getting in touch with the MDS Patient Support Group is proving to be one of the most reassuring (and helpful) things we have done so far since my Dad was diagnosed."
Dr Victoria Potter is the Consultant Haematologist and Transplant Programme Director at King’s College Hospital. She has been at King’s College Hospital since 2010 and estimates she has over-seen over 1000 stem cell transplants in that time. King’s is one of the 3 largest transplant centres in the UK.
Michelle Kenyon has been a Clinical Nurse Specialist at King's College Hospital for almost 25 years. She also runs a 'Long Term Effects' clinic for people who’ve had a stem cell transplant. Michelle is the co-author of two books on stem cell transplants.
Michelle Kenyon co-authored two patient information books on stem cell transplantation. The first book, 'Seven Steps', is the most widely used stem cell transplant patient information booklet in the UK.
The second book, 'The Seven Steps: The Next Steps'. was produced in direct response to feedback Michelle received from her patients at King’s, who would often tell her that they needed more information about what to expect after a transplant.
To access a .pdf of 'The Seven Steps: The Next Steps' click the link below. https://www.anthonynolan.org/sites/default/files/2021-08/1981PA_Next7Steps2021_DIGITAL.pdf
Written by Kate Vahl
The American Society of Haematology (ASH) have published some very interesting articles about various aspects of MDS and the potential effectiveness of a number of treatments (see the links below).
The hematopoietic cell architecture in myelodysplastic syndromes (MDS) may have the potential to predict disease progression and guide use of second-line treatment...Read more
The presence of ASXL1 mutations predicted a favourable response and survival after venetoclax and hypomethylating agent (HMA) therapy in patients with MDS with excess blasts (EB)...Read More
Patients with higher risk myelodysplastic syndromes (MDS) were treated with magrolimab plus azacitidine in a phase Ib study. Investigators noted a lower-than-expected rate of discontinuation due to adverse events (AEs)...Read more
Written by Kate Vahl
If you are listed as a vulnerable or disabled person, due to MDS or any other condition, and your local water authority has imposed a hosepipe ban, please contact their customer service department and ask to be added to their priority service register.
Certain exceptions apply to the hosepipe ban in the case of older/vulnerable persons, for example, you may still be permitted to use a hosepipe to water plants if you would have difficulty managing a watering can. One of our supporters registered yesterday, with South East Water, and received a supply of bottled water today too!
Written by Kate Vahl
The drug Evusheld has been approved by the MHRA (Medicines and Healthcare products Regulatory Agency), but the government has not yet made a decision whether to make it available to patients.
We are continuing to monitor the access issues and joining the request of all blood cancer charities to make this drug available to immunocompromised patients, in particular blood cancer patients who have not responded sufficiently to the Covid-19 vaccines to date.
You can help by writing to your MP, asking them to add pressure to the government, to make the drug accessible.
For tips on writing to your MP, and how to find their contact details see the
The Results website
Click this link to visit the Results website https://www.results.org.uk/guides/how-write-your-mp
Do quote both Evusheld articles below and explain that MDS patients need this additional treatment option, to have a semblance of normal life.
'Evusheld is Approved in UK' by Jacqui Wise - Click this link to read the BMJ (British Medical Journal) article on Evusheld https://www.bmj.com/content/376/bmj.o722
'Clinicians call for Anti-Covid Treatment to be Available in the UK' - Click this link to read the Medscape UK article by Siobhan Harris. https://www.medscape.co.uk/viewarticle/
The APPGs (All-Party Parliamentary Groups) on Blood Cancer and Henry Smith MP, are also seeking answers on behalf of all blood cancer patients.
Click the link below to read about Henry Smith's role as the chair of the All-Party Parliamentary Group on Blood Cancer https://www.henrysmith.info/bloodcancer
Written by Kate Vahl
After many years with us, our wonderful treasurer, Don Barrett, has decided to dedicate more time to his new grandchildren. We are deeply grateful for the many years Don has supported us, and the care and skill he's brought to managing our finances. Could you step into Don’s shoes? You don’t have to be a qualified accountant, just have financial management experience, a head for figures, a working knowledge of Sage Accounting/Payroll systems and a love of spreadsheets!
We are currently looking to recruit a number of Trustees to help steer the charity as we develop and expand. Applicants from all backgrounds and experience will be considered, but those with legal, IT, or research experience would be particularly welcome.
Do you have a flair for words? An eye for detail? A love of grammar? If so you could be the perfect person to edit and proofread our monthly newsletter, as well as help with copy for our patient information literature, and we’d love to hear from you!
If you are interested in any of these roles, please email our Operations Manager, Debbie at dhickman@mdspatientsupport.org.uk for further information.
Written by Kate Vahl
Try our newly upgraded Chat Forum, it's the perfect answer! Whether you are a lapsed user, or new member - do give it a try! Leave a new message in one of the folders, ask a question, respond to a message that’s already there or just say hi!
When we started our MDS Community Facebook group, our popular Chat Forum shrank, as everyone migrated to Facebook but many of you are coming off Facebook, or are not keen to use it anyway.
The Chat Forum has been newly upgraded and reorganised to make it easier to navigate. It offers a direct link to other patients and relatives, it is protected by a coded username and a password, and arranged via themed folders. You can find information too, such as Travel Insurance recommendations and tips, messages from our Local MDS Groups, messages about transfusion needs, stem cell transplants and much more.
Evidence has shown that peer to peer support is important to people coping with cancer. In the words of Lidia Schapira, MD, FASCO
Peer support through web-based platforms, lets a person vent their frustration, learn about new treatments or research protocols, and exchange information. Knowing that others have had similar experiences and that they can help, may make all the difference in how someone lives through the challenge of cancer....Hearing that you are not alone can inspire you or give you a little more confidence to overcome a difficult symptom or side effect. Peer support may help explain treatment options or provide a deeper understanding of your diagnosis. It may point to new research that may be relevant to your situation.
So give it a try!