This month’s blog will look at:
- Post stem cell transplant advice
- How family members can be added to the stem cell donor list
- Myeloma and Anaemia
- Financial support available
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
- Patients referred for allogeneic transplantation always have treatment (including an autologous high dose therapy and stem cell transplantation (HDT-SCT) first. This is because the doctors will want the patient to be in as good or as deep a remission as possible in order to give the donor immune system (either from a sibling or an unrelated donor) time to establish itself whilst the patient’s myeloma is under control. The pattern for this treatment pathway is usually to have induction treatment followed by autologous HDT-SCT, followed by allogeneic transplantation approximately three months later (once the body has recovered from the prior treatment)
- Allogeneic transplants are not considered to be a part of routine treatment as currently there is not enough evidence to prove that they definitely benefit myeloma patients. Some studies show that allogeneic transplants are of benefit and can achieve long-term remission in some patients, whereas other studies suggest that the risks of side effects such as graft versus host disease (GVHD), infections etc. outweigh any potential benefit
- However, a doctor may recommend an allogeneic transplant to a patient if they feel that in their case the potential benefits outweigh the risks – so for example if a patient is young, fit and has myeloma with high-risk features
- A transplant using a donor’s stem cells aims to prolong the remission period for as long as possible by achieving a ‘graft versus myeloma effect’. To elaborate:- when someone develops myeloma we know that the individual’s own immune system is not recognising the myeloma cells that have developed as ‘abnormal’ and thus the cells are allowed to multiply. Transplanting stem cells from a matched donor into a patient potentially means that the donor stem cells will recognise the myeloma cells as abnormal and thereby kill or restrict their ability to multiply
- Graft versus host disease (GVHD) is the main risk in patients having allogeneic transplantation. This occurs when the donor cells not only recognise any residual myeloma cells as foreign and attack them, but may also recognise other cells within the patient’s body as foreign and attack them too. Doctors will attempt to manage this by using immune-suppressant drugs. Connected to this – when a patient is undergoing an allogeneic transplant, and for up to a year later their ability to fight infections is lowered so the risk of a serious infection is greater
- In order to reduce the risks associated with allogeneic transplants, doctors have developed the ‘mini-allogeneic transplant’ (sometimes called a reduced intensity conditioning transplant or RIC) which involves giving a smaller amount of chemotherapy than that traditionally used for an allogeneic transplant. This reduces the bulk of the myeloma, eliminates some but not all of the patient’s immune system, but will sufficiently suppress the remainder of the patient’s immune system to prevent rejection of the donor transplant
Potential questions for your team:
- Can you explain why you are recommending an allogeneic transplant in my particular case?
- What outcomes have been documented in studies of patients undergoing allogeneic transplant – and especially unrelated (this unrelated query is specific to the ATN I replied to. Most donor transplants try to use matched siblings) donor transplant, and how do the patients in those studies compare to my own situation?
- Would be possible to delay further treatment until you do relapse (i.e. delay the donor transplant)
- If I decided not to go ahead with an allogeneic transplant what are the likely treatment options available to me in the future?
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:
- PEER Network. We can connect you on a one-to-one basis with a patient who has had an allogeneic transplant if you feel this would be helpful. Here is a link to a little information about the programme: https://www.myeloma.org.uk/peer-network/
- Also (unconnected to Myeloma UK) a patient has set up a Facebook page for myeloma patients in the UK. This is a very busy Facebook page with over 2,000 members. Some of the contributors have had allogeneic (related and unrelated) transplant and have shared their experiences. This is a closed group so gives a degree of anonymity and you would have to request to join: https://www.facebook.com/groups/408542472584923
- The Discussion Forum on our website has an ‘under 50’s’ thread. For more information please look here: https://www.myeloma.org.uk/help-and-support/
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
- The Citizen’s Advice Bureau also often offer advice and guidance on benefits and finance management
- Turn2us is a national charity that helps people in financial hardship gain access to welfare benefits, charitable grants and support services. They can sometimes help to identify other organisations offering financial assistance for specific circumstances. Here is a link to their website: https://www.turn2us.org.uk/
Myeloma Information Nurse Specialist