[patsyannParticipant]

Hi. Does anyone have experience of being on any of the above? My husband, diagnosed in 2013, has gone through pretty much all of the earlier treatments but with limited success. His consultant has now suggested he think about palliative care only as he has increased bone pain and his blood counts have taken a beating without much improvement. The above are all now available here in Scotland so I’d assumed there are still options for him but it seems to be a question of balancing likely treatment outcomes against quality of life. Any information from personal experience would be welcome.

[reedhammanParticipant]

You can ask your GP to refer you to another doctor for a second opinion if you think that your present consultant is missing some treatment choices for your husband.

I am taking my third batch of treatment options now and I am doing quite well. When this fails, as it surely will some day, I will be faced with a choice of more intense treatment with limited returns or make do with palliative care and just fade away.

It is personal choice. There will come a time when I will say “no more treatment.”

John

[patsyannParticipant]

Thanks for replying, John. We have an appointment for a second opinion, although existing consultant has laid out alternatives and we’ve always found him very good. It’s the personal choice bit that’s difficult. We’re just trying to gather as much information as possible before making it. It will be down to my husband, who is not feeling too great at the moment, to decide. We just hadn’t expected to be confronted with it yet and although the medical view is valuable there’s not much information about the side-effects/effectiveness of these treatments from the patients’ viewpoint out there as yet – or at least not that I can find.

[finnParticipant]

I was on Carfilzomib, Revlimid and Dex combo and it worked really well. The triple drug combination was much better than any double drug treatment I’ve had so far. So if your husband has any energy left why not give it a go? If it does not work, or if he feels too bad, the treatment can always be stopped at any point.

[patsyannParticipant]

Thanks for that, Finn. He didn’t do all that well on Revlimid and Pomalidomide isn’t working. They don’t seem to offer triple combinations here at all but it’s worth raising it when we see the consultant so that’s helpful.

[dbrrParticipant]

The Revlimid I had been taking is no longer working, and my oncologist recommends that I be given weekly daratumumab infusions and hope to extend my life beyond the six months he thinks I might now have.  When I had colon cancer eight years ago, the surgery was followed up with 12 treatments of an infusion which included oxaliplatin.  The resulting neuropathy has been excruciating.  I am finding it difficult to agree to another infusion when my past experience has been so bad.  I wonder, if I should find this new drug to be intolerable, whether the side effects will stop when I stop the drug or whether they will be permanent.  The neuropathy was supposed to have been temporary.  I’m not anxious to add some other ailment to an already too-long list of complaints.  Understanding that we are all different, I would be interested to hear other people’s experiences with side effects.  Best wishes to all.  Michael

[patsyannParticipant]

Hi Michael. It’s really difficult to make a decision like this, especially as side-effects, and their duration, vary so much from person to person. We decided to gather as much information as we could beforehand. The only treatment available for my husband was Carfilzomib. Side-effects sounded manageable so we opted to go ahead. As it happened the side-effects have been different to what we expected. Some kidney problems and low BP as well as a temperature spike following each treatment. This has meant weekly hospital admissions (and some worrying moments). But – on each occasion so far he has recovered quickly, and the treatment has had some effect. So we have no regrets about choosing to go ahead although we might have hesitated if we’d known what to expect. That probably doesn’t help you much but sometimes I think you just have to gather all the information you can and then make a decision that you’re prepared to accept is the best you can do in the situation. All the best whatever you decide.

[kevinParticipant]

Have only a months experience of carfilzomib. Briefly I was diagnosed on 2006. Cdt followed by SCT. 5 years remission. 2013 CDT followed by SCT. – 5 years remission. Started to return 2017 and started treatment in January 2018. Carfilzomib and dexamethasone. My experience is that I had different side effects from my first 2 treatments even though they were the same. I have only had one cycle of my current treatment and the only significant side effect at the moment is lethargy/tiredness/ fatigue. although not great could be a lot worse. My attitude is I just plough through it. Sometimes ok sometimes not so good. My attitude is that I know this treatment will work and I will have at least another 5 years remission.
Best wishes
Kevin

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