Choosing between treatment options

My father has multiple myeloma and is 90 years old. He has recently come off a drug trial (ixazomib lenalidomide dexamethasone) due to the appearance of new lesions (he's no longer eligible as a result). Two consultants at his hospital disagree and have given Dad different options for treatment leaving it to us to decide/consent. We have to send back the forms asap - no later than Monday really.

Option 1 is to take Bortezomib/Velcade and Darzalex/Daratumumab in the day unit once a week (I've been told this is half a dose as it would normally be twice a week). The staff at the Day unit think this is quite a lot to handle for a man of Dad's age and why would we put him through it?

Option 2 is a gentler option of Cyclophosphamide with Prednisolone and can be managed with tablets at home. Of course, the gentler option seems more appealing, to go for quality of life rather than what might technically be greater results on paper but I want to make the best possible decision for him.

I worry that with option 1 and his decreasing mobility (he has osteopenia in his pelvis and has just had palliative radiotherapy) we might put him through the mill make him feel rotten and still find that despite the length of time it might give him he will have other life limitations and decreased mobility.

However, I also worry that going for the gentler option 2 is easier for me as his carer too and that I am giving up on him if we don't throw everything but the kitchen sink at his Myeloma!

Perhaps it's better to feel good albeit potentially for a shorter span of time. Does that make sense? I've told Dad it has to be his decision but if I could get a sense of how the treatments might make him feel I'd know if we were doing the right thing or at least we've sought a second opinion before just going with a gut decision.

  •  

     Hello @Grace101.

    Thanks for getting in touch and welcome to the online community. It sounds like you are having a worrying time making the decision about your dad’s treatment for myeloma. Your questions make complete sense.

     

    You and your Dad have thought through a lot in relation to your dad’s age, his decreasing mobiIity, and quality of life for him. All of these factors are very important and unique to your dad as no two patients are the same, that’s what makes these choices so complex. It is hard to predict how each option would make him feel as each person has a different response to treatments.

     

    As you will have read in our disclaimer, unfortunately, we cannot offer a second opinion. You could ask your dad’s consultant for a referral for a second opinion or alternatively, his GP could refer him to another haematology team. Please also take into consideration that this may delay the start of his treatment.

     

    You would also need to take into consideration how long he would have to travel and how long he may expect to stay at day unit as treatment in itself could be tiring and how this impacts his quality of life.

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    Making treatment decisions can be so difficult. There are several things to consider when you are about to make a decision about treatment. It is good to think about the possible benefits and disadvantages of treatment to help you make the right decision for you. There are no right or wrong answers. Maybe have a look over some information on velcade, daratumumab, cyclophosphamide, and steroids. It is important that you have all the information about side effects so that your Dad can give informed consent.

     

    Your Dad’s Clinical Nurse Specialist (CNS) or Consultant can help him to understand his treatment options and support him through his cancer experience. You could talk over the outcome of the multi-disciplinary team meeting (MDT) To better understand why these 2 options were offered. Another question to ask would be is there a possibility of reviewing this treatment decision after one or two cycles of treatment? This would allow you, your dad, and his treatment team to consider how he is tolerating treatment at this point and how his myeloma is responding to this.

     

    If you would like to read more general information about this type of cancer and treatments , we would also recommend having a look at the Myeloma UK website

    You will also get good support from the carers and myeloma groups that you have joined in our online community.

    Best wishes

    Barbara, Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref BS/JEL