Ask The Nurse // 28th September 2018
This month, our Myeloma Information Nurse Specialist talks about stem cell transplants, anaemia and financial support.
Ask The Nurse // 28th September 2018
This month’s blog will look at:
Stem cell transplant advice (this query is specifically about allogeneic transplant rather than the more routinely carried out autologous transplant – HDT-SCT)
Through the Infoline and the ‘Ask the Nurse’ email address we regularly receive enquiries from patients who are looking for some guidance post stem cell transplant and in some instances donor suitability.
For all patients, we are keen to highlight that the team (the doctor (haematologist) in charge of a patient’s care, and transplantation doctor in particular) will be best placed to provide you with information specific to your situation.
This is because each myeloma diagnosis is unique: how an individual’s myeloma presents and behaves, how an individual responds to treatment, and other unique factors such as the specific nature of a patient’s myeloma as well as any other health issues or complications of treatment encountered, will influence the potential risks, benefits and response to treatment for that individual. Even with this information, it can be difficult, if not impossible to predict with any degree of certainty how an individual patient is likely to respond.
However, I have attempted to outline some key points and some potential questions below which I hope could be useful when speaking with the team.
Allogeneic (donor) stem cell transplant
Potential questions for your team:
Finally with regard to allogeneic transplant if you are interested in hearing another patient’s experience of this type of transplant there are several ways you can do this:
Stem cell donor list
Recently we have received a number of enquiries from family members asking how they can be added to the stem cell donor list. In some instances, the patient’s doctor (haematologist) may ask for close family members to be tested to see if they are a good enough match to the patient – so he/she will instigate that. However, please ask your family member to ask their doctor what the protocol for this is.
To register in general to become a bone marrow donor – there are several organisations which do this.
The Anthony Nolan Trust has a register and takes on potential donors from the age of 16 to 30. For more information here is a link to their website: https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells
For those over 30, you can find out about the UK’s other registries via the two links below – you only need to join one registry as matching information is shared anonymously between them all :-
As some patients may be aware anaemia is a common complication of both the myeloma and some of the treatments for it– it can be caused because myeloma cells inhibit the activity of the bone marrow and thus the healthy blood cell production can be decreased.
Treating the myeloma itself will then often lead to an improvement in anaemia – this can however take some time with some patients requiring several cycles of treatment before the anaemia improves.
Often when a patient is on treatment for their myeloma and especially when the myeloma is particularly active i.e. at diagnosis or relapse, it can be a fine balance between getting on top of the myeloma and its complications (anaemia and susceptibility to infection) without causing too many other issues with treatment related side effects. However it is mostly a balance that can be achieved – but it can be a worrying time for all concerned.
Blood transfusions can certainly help alleviate the symptoms of anaemia and are useful in the short term – perhaps until the treatment has had a chance to improve the situation. However some patients may need treatment with a growth hormone called erythropoietin (EPO) which can help boost the production of red blood cells.
You may wish to read our Infoguide on fatigue which has a section on anaemia: https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-Fatigue-Infoguide.pdf
We appreciate the financial concerns that patients and family members may have when being faced with a diagnosis of myeloma.
Infosheets with further guidance on finances and benefits are available here:
You can also access information from a hospital social worker via your clinical nurse specialist (CNS). The below organisations can also provide valuable information
Myeloma Information Nurse Specialist