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.
Maureen, I’m so very sorry to hear this. I know you both fought this so hard. And you’ve given so much support and encouragement to those of us also fighting over the last few years. Please take care of yourself and know I’m thinking of you.
Pat
Hi Maureen
Thank you. I’m veering between hope and paralysing fear at the moment.
Family and friends do their best but I think this is a time when you do really feel you’re on your own. I think you might be right to consider the hospice, or at least some respite care if you can get it. At least you would get some rest. And if someone else is responsible for the practical care you can concentrate on sharing the love and comfort with Ian that you’d both want. God bless, whatever you decide.
Pat
Thanks again, Janet. It would be useful I think if more information was available on how to find myeloma specialists and where/what genetic tests are available. Most people are so shell-shocked at initial diagnosis I think that we just go along with whatever we’re told. David’s consultant has always been ready to answer questions but it can take a while to find out what questions to ask. And then of course treatment depends on what’s available locally.
Pat
Maureen, I too am so sorry to hear this. We may be in the same situation after we see a second consultant tomorrow. My husband David is four years on from diagnosis and at fourth-line treatment but his consultant thinks more treatment may cause more problems than it solves. It’s so hard to accept. Thinking of you both.
Pat
Hi Jan
Thanks. We don’t seem to have access to trials locally and have no idea what David’s genetic status is, although the consultant says he seems to have an aggressive version as his responses to treatment haven’t been good. The 3-month gap in Zometa also coincided with same gap in consultations after he’d finished course of Velcade and by the time we had the next one he was getting more pain and pp levels had shot up so I’m not sure if problems would have been picked up earlier if he’d had his usual monthly check-ups. We’re seeing another consultant tomorrow so I’ll see what he thinks.
All the best for your own treatment progress.
Pat
Hi Jan
That’s interesting as my husband was switched a few months ago from monthly to 3-monthly Zometa after 4 years. He’s since relapsed (which I don’t think is anything to do with the change) but he’s also experiencing a lot of new bone pain so I queried it with consultant who says latest guidance is that 3-monthly is as good as monthly. That doesn’t really make sense to me but as new treatment not working and that may be another reason for pain we may be clutching at straws here.
Pat
Hi Adelaide
Many thanks for your reply,and for the good wishes which are very welcome at the moment. The effect on red blood cells and platelets has been an issue for my husband with Revlimid and Pomalidomide so that would be a concern, but as you say everyone’s reactions to specific drugs are different. He did better on Velcade. It’s also interesting to know that your husband has had some lowering of the light chains after two cycles. David’s response is measured by pp levels but his consultant seems to think that if there’s no favourable response after 2 cycles it’s unlikely to happen – although I suspect his may actually have risen.
I hope your husband’s improvement continues. Best wishes to you both for the future.
Pat
Sorry, Teresa, that last post should have been to Maureen and adelaide56. Brain not functioning properly.
pat
Hi Maureen and Teresa,
Can I ask how your husbands are doing on Carfilzomib now? My husband has just been taken off Pomalidomide as it isn’t working after 2 cycles and we’ve been told we should consider moving to palliative care as he’s not really had a good or lasting response to anything and is now at 4th line treatment. He did get 15 months at a good level following SCT in 2014 but that wasn’t enough to go for second SCT. We hadn’t expected to have reached that stage yet when there are treatments still untried so we’re a bit shocked. Seeing another consultant next week for second opinion but trying to gather what information I can before then. He was diagnosed in 2013 and has had CDT, Revlimid and Velcade in the past.
Pat
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.
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.
Hi sabs
My understanding is that normally bone does renew itself (at least to some extent) but the problem with myeloma is that it interferes with this process so the answer, as with so many aspects of this illness, is likely to be ‘it depends’. Everyone is different. And at this early stage for your husband no one may know. Please tell the consultant you see tomorrow exactly what your concerns are. Write them down if necessary. And the answers! Ask what contact there is between the two specialists and how they’re working together on this. Hopefully they’ll be able to give you a clearer idea of the way forward.
Hi sabs
I’d definitely raise it at the hospital appointment. If there’s one thing I’ve learned in dealing with this illness it’s that it’s really important to get answers to any concerns you have. My husband too had months of back pain when he kept being told it would go away and to keep taking paracetamol! So I don’t feel guilty about pushing for answers, and the hospital staff have always been understanding about that. I know what you mean about your lives being turned upside down in the space of a day.
Maureen
I’m glad to hear your husband is doing OK on the Farydak combination. I’ve followed your progress with particular interest as I think you’re fairly near us – we’re in Fife. The lack of available trials in Scotland worries me as treatment options seem more limited than I’d expected. My husband has just finished a course of Velcade and Dex so we’re hoping the good effects last for quite some time.
Hi sabs
I don’t usually post but have found the forum really helpful since my husband was diagnosed in 2013. He had a couple of damaged vertebrae and was in a great deal of pain at that time so I felt I should respond. His haematologist was very clear from the start that dealing with the pain was a priority. It took a while to sort it out and the palliative care team were involved early on. He takes slow release oxycodone twice daily and gabapentin three times a day. He also has oromorph liquid if needed but doesn’t usually have to take any. Consultant stressed that oxycodone shouldn’t be addictive if it’s needed to deal with pain. He also had one shot of radiotherapy early on. There are options such as vertebroplasty and kyphoplasty (which he opted not to have) but I think the spine needs to be stabilised first which is probably why your husband has the brace.
The end of June seems a long time to have to wait so I’d be inclined to contact haematology and stress how much of a problem the pain is causing and ask what can be done to get it under control. If that doesn’t work phone or email one of the nurses here and ask for advice – they’re really good.
We’re still battling the MM but the pain is under control and life goes on reasonably well.
