[loulou80Participant]

Hello

My partner has just been diagnosed with myeloma but we have no further information yet. We have a first appointment with consultant next week. Feeling overwhelmed, but want to be prepared to ask the right questions. Does anyone have any advice or what we should be asking, or information on what we should be pushing for? Thanks in advance

[marty2019Participant]

Hi Loulou80! Sorry to hear of your situation. I was diagnosed with myeloma about 2 years ago and I am still asking questions. Remember the only silly question is the one not asked. I would recommend doing some basic research into myeloma before your upcoming appointment as a lot of medical jargon such as “paraprotein”, “platelets” and “neutrophils” crops up all the time. If you don’t understand something makes sure you get your doctor to explain in clearly. You have the right to understand what is going on. MyelomaUK offers a good range of resources into treatments and medications. I use it a lot. Here in Australia, I also access the MyelomaAustralia website. I would get your doctor to explain exactly what myeloma is and what treatments are available and over what time frame. Also ask about an costs (i.e. treatment, medications, etc). Ask about any in-home care and equipment that may be available (such as handrails in the bathroom). Ask whether the hospital offers free transport from your home to the hospital. Falls are an increased hazard for myeloma patients as we are more prone to fractures from even mild bumps and knocks. Recently, I have been asking a lot of questions of how Covid affects me as myeloma and its treatments affects the immune system. Also ask about your partner’s dietary needs. I lost a lot of weight very quickly just before I was diagnosed and during my stem cell transplant. I hope this helps. If I can think of anything else, I will let you know.

[loulou80Participant]

Thank you so much for the information and for taking the time to reply. It really does make a difference.

[mulberryParticipant]

Ask myeloma UK for a patient diary, this will give you information about the disease, blood tests etc.

Ask what type of myeloma your partner has, (IgG, IgA, kappa or lambda light chain, non- secretory etc) and what are the likely implications of this.

Which ‘CRAB’ features does your partner have- high calcium? Renal problems? Anaemia? Bone lesions? What treatments will be given for these?

What is the percentage of cancer cells in the bone marrow? ( Be prepared for a shock, this can be very high)

What is the proposed treatment and when is it envisaged will it start?
Are any trials available?
Is stem cell transplant likely to be considered for your partner? Where & when would this take place?

Your partner will have regular blood tests, which will cover multiple areas, an almost unbelievable number of individual results. Ask which ones are likely to be most relevant in your partner’s disease (this does vary myeloma patient to patient)

Will your partner have a named haematologist and nurse?
How many myeloma patients is the haematologist treating currently?
(If the answer worries you, you can ask his GP to refer him to a bigger hospital for a second opinion- it really makes a difference if you are treated by an experienced myeloma consultant/team despite all drs following a NICE treatment protocol) How often will your partner be seen, and will it be by the same Dr?

Does the hospital have an online patient portal giving access to test results and treatments? If not, how are patients informed about their results?

It’s good that you are planning the appointment, I hope it goes well.

[loulou80Participant]

Thank you so much for taking the time to reply. I will definitely be asking lots of these.

Take care.

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