[sarahdempseyParticipant]

Thank you for your post on the forum, my name is Sarah and I am one of the Myeloma Information Specialists here at Myeloma UK. I am glad to see someone has responded to your post, however I thought I would make some further comments below, which I hope you find useful.

I am so sorry to hear about the difficulties your family has been experiencing since your wife’s tandem stem cell transplantation. I can only imagine how hard it must be for you to support your wife and your daughter through such a difficult time. It’s important to note that it is completely natural and not uncommon for your daughter to be responding in this way.

One of the most useful things you can do to support your daughter is providing a listening ear, encouraging her to talk about her feelings and being attentive to her needs, which you seem to be already doing. It is also important that you look after yourself as well – take support from family and friends and try to make time for yourself when you can in order to recharge.

It is completely understandable that your daughter would be upset and struggling with her mum’s ill health. As her father, it sounds as though you are doing everything you possibly to support your daughter and also trying to get some additional support that she might also benefit from at this time. I would encourage you and your wife to speak to her team at the hospital again about your daughter’s emotional needs. Sometimes a referral to a social worker can be helpful – they may be able to offer additional suggestions and/or arrange further support to help your daughter cope and manage her emotions whilst her mum is in hospital – so please do speak to them again and stress the challenges your family are experiencing at this time, and the concerns you have.

I wonder if it would be useful and/or possible for your daughter to use facetime or even share voice notes with your wife whilst she stays in hospital – it may be a way to help your daughter feel close and near to her mum even when it is not possible for her to visit her in person. Other things that might help with being away from her mum could include perhaps your wife recording your daughter’s favourite story or book and then your daughter could read along/listen to the recording before bed time.

It may also be an idea to speak with her current counsellor about ways you can continue to support your daughter at home. In the meantime, I have made some suggestions below of some organisations that may be able to help with information, support etc.

The Osborne trust offers free emotional and practical support for children of a parent with a cancer diagnosis and undergoing cancer treatment. Help if offered freely to children aged 16 years and younger with a parent with any type of cancer all over the UK.

Home start offers support to families going through a wide range of difficulties including illness. It might be another useful resource to tap into.

Shine Cancer support may be a great organisation for your wife. Shine Cancer Support exists exclusively to support adults in their 20s, 30s and 40s who have experienced a cancer diagnosis. They may have additional information and resources for you both.

Don’t forget the kids – they are based in London however, they have a mail out service for those of whom the peer support group is not accessible. Which consists of children’s books and information for anyone supporting a child whose parent is living with Cancer. It might be a useful resource, even if it just for some practical advice and shared experiences.

Anna Freud National Centre for children and families offers a range of specialist treatments and assessments for children, young people and families. They are closely link to Child and Adolescent Mental Health Service (CAMHS) and I have found contact details for the Portsmouth area – which you can find HERE

Sometimes a local hospice can provide additional support for a family affected by cancer, and/or may be able to signpost. It is important to note that the care and support services that hospices might offer is not only limited to end of life care. Patients and families at other stages of illness can also sometimes access and benefit from the support they can provide, such as complementary therapies, a range of activities and counselling. I have done some further research into hospice services in your area. Rowan Hospice offers (along with other services) a ‘drop in’ ‘Living Well Centre’ which supports people who live in Portsmouth and South East Hampshire who are living with a life-limiting and progressive illness. They support people aged 18 and above, regardless of diagnosis and extend their support to their friends and family members during any stage of the illness. It also offers a ‘meerkats service’ which provides special support to children and young people when they have a family member receiving care through their facility. This may or may not be something you wish to explore but if you would like some further information please click HERE. They also have a wide range of complementary therapy access that you or your wife may wish to explore – you can find out more about that HERE.

I hope this has been helpful but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

Kind regards
Sarah

[sarahdempseyParticipant]

I am sorry to hear that your dad has received a confirmed diagnosis of myeloma.

For clarity – In myeloma, these plasma cells become abnormal, multiply uncontrollably and produce a large amount of a single type of antibody – known as paraprotein – which has no useful function. It is often through the measurement of this paraprotein or light chains (smaller part of the paraprotein) that myeloma is diagnosed and monitored. Myeloma is a very complex and individual cancer both in the way patients experience symptoms/complications, and in the way it responds to treatments – this can vary from patient to patient. This can also be said in relation to how slowly or quickly this paraprotein or light chain will increase – therefore each patient can require treatment at a different rate.

Patients are usually ‘staged’ at diagnosis. The most commonly used staging tool in myeloma is the International Staging System (see below for details). It looks at the levels of two proteins – beta 2 microglobulin (β2M) and albumin. Staging indicates the effect the myeloma is having on the body and can be used to help determine the bulk of the myeloma and may determine when treatment should begin.

The International Staging System:
• Stage 1. The level of β2-M is less than 3.5 mg/L, the level of albumin is more than 3.5 g/dL
• Stage 2. The level of β2-M is between 3.5mg/L and 5.5mg/L with any albumin level or the level of β2-M is less than 3.5mg/L and the level of albumin is less than 3.5mg/L
• Stage 3. The level of β2-M is more than 5.5mg/L

The presence of complications, caused by the myeloma damaging specific organs and tissues of the body, can also help to determine the characteristics of your husband’s myeloma. These are commonly referred to by the acronym ‘CRAB’ which describes the four major complications that are generally observed in myeloma:

• C -calcium elevation
• R -renal (kidney) damage
• A - anaemia
• B -bone damage

Results from blood tests, scans (X-ray, MRI, Pet scan) together with CRAB, will help determine when treatment should begin, what that treatment should be, and provide a baseline against which response to treatment and disease progression can be measured. I hope this has provided you with some further clarity but if you would like to speak in person (Myeloma Infoline: 0800 980 3332) or email us (askthenurse@myeloma.org.uk), please do so.

[sarahdempseyParticipant]

Good afternoon

My name is Sarah and I am one of the Myeloma Information Specialists here at Myeloma UK. I am sorry to see that you haven’t received a response yet but hope I can provide some information that may be helpful.

The adoptive T cell transfer (CAR-T cell therapy) you mentioned, is a new type of treatment that uses the body’s own immune system to kill myeloma cells. A lot of research is focusing on the potential role of the immune system in treating cancer and some myeloma treatments are already in use that work by modifying the immune system, such as the immunomodulatory drugs (IMiDs) lenalidomide (Revlimid®) and pomalidomide (Imnovid®). However, for clarification – adoptive T cell transfer is unlike any other immunotherapy treatments currently used in myeloma. Rather than using a drug to modify the immune system, a patient’s own immune cells are collected and genetically modified in a laboratory to enable them to kill myeloma cells.

At present, CAR-T cell therapy is not routinely available for myeloma patients in the UK – the APRIL trial (CAR-T cell therapy) is the only trial available in the UK for relapsed or refractory myeloma patients i.e. patients who have had at least three previous lines of therapy that have included a chemotherapy drug (e.g. cyclophosphamide or melphalan), a monoclonal antibody (e.g. Darzalex®), a proteasome inhibitor (e.g. Velcade®) and an immunomodulatory drug (Revlimid®, thalidomide or Imnovid®). Unfortunately, if your father has been diagnosed with myeloma, he would not meet the specific criteria for the trial at this time. However, if you wish to look at any other clinical trials currently available in the UK, please follow the link below to our clinical trial finder.

https://trials.myeloma.org.uk

Unfortunately, clinical trials investigating CAR-T cell therapy for myeloma patients is only in its early stages globally compared to other types of blood cancers (as you have mentioned above) which have been approved by NICE with certain guidelines. I hope this has been helpful but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

• This reply was modified 5 years, 1 month ago by  sarahdempsey.

[sarahdempseyParticipant]

Hi, my name is Sarah and I am one of the myeloma information specialist here at Myeloma UK. I am sorry to see that you haven’t had any response but if you would like some information or wish to discuss the cardomon trial further, you can give us a call on the Infoline on 0800 980 3332 or alternatively you can email directly to askthenurse@myeloma.org.uk. Kind regards, Sarah

[Author]

Posts