Wishing you both well on the Daratumumab. Please let us know how you get on with it. We’re still waiting to see if David can have it. It needs to be a special request as he’s beyond 4th line treatment. He’s had Lenalidomide, Velcade, Pomalidomide and, most recently, Carfilzomib. He’s always done better on the proteasome inhibitors (Velcade & Carfilzomib) than what his consultant calls the “imids”. Everyone seems to be different so it’s good that there’s more than one way of fighting this
Pat
Hi Mike and Tom
My husband David’s consultant is applying for Daratumumab for him as Carfilzomib has stopped working. This would be 6th line of treatment for him so it’s not certain he’ll get it but I hope it works well for you both and it will be interesting to know how you get on.
Tom, it’s lovely to see you on the forum again. Your positive posts were such a help and encouragement when David was diagnosed in 2013 and we were in a very dark place. I didn’t really post then but drew a lot of strength from your posts as we prepared for SCT and have wondered how you were doing. Thank you for that.
Pat
Thank you for the good wishes. We saw the consultant on Wednesday and he’s going to apply for Daratumumab so now we just have to wait and see what happens. Just knowing that there’s the possibility of further treatment has given us a lift. Will keep you posted.
Pat
Hi Peter
Sorry for the delay in replying. It’s been a difficult week. My husband was admitted to hospital after a really bad night with new pain which the consultant thinks is new bone damage as his pp levels have been rising again. The Carfilzomib has probably been holding them in check but is no longer really being effective. Revised pain relief has helped a lot and he’s had scans to determine damage. This time last year, when Pomalidomide failed, it was suggested he consider palliative care only and wasn’t expected to survive this long. We asked for a second opinion and have been lucky that Carfilzomib has worked but we’re now back where we were. Bendamustine is a possibility but I think the concern is for side-effects outweighing benefits. We’ve been told Daratumumab isn’t an option for reason mentioned above, and also that it tends to be more effective offered at an earlier stage. It does seem harsh that, because it was only licensed last year, patients who had already had more than the 4 treatments specified should be excluded, especially when other options are limited by that stage. We’re in Scotland so can’t blame NICE or NHS England. I’m not really sure why Ixazomib or Panobinostat don’t seem to be options but it may be because of side-effects or, in the case of Ixazomib, similarity to Carfilzomib. He’s been through a lot in the way of side-effects so it is a consideration after more than 5 years. I have to say that we really can’t fault the level of care from everyone from consultants to nursing staff and what happens next will be his decision. But limited access to trials and drug combinations as well as limits on access to some drugs do seem to mean that you can run out of options rather more quickly than you expect to given some of the optimism about “new treatments coming along all the time”.
Pat
Hi Helen. It’s good to see your name in the Forum again. I’ve been wondering how you’re getting on as I haven’t seen any posts from you for a while. I’m sorry to hear you’re relapsing again and wish you well with the Interferon, which I’ve never heard mentioned as a Myeloma treatment before.
Can I ask how you got on with Panobinostat? My husband has just been told Carfilzomib is no longer working for him and the general opinion of his consultants seems to be that that’s it as far as treatment’s concerned. Bendamustine and Cyclophosphamide have been mentioned but not with any degree of enthusiasm. He doesn’t qualify for Daratumumab because it’s licensed for 4th-line treatment only and he’s well past that. We’re clutching at straws here but he doesn’t feel ready to give up yet.
I hope so Stu. But I’d have thought someone should be keeping your mum, or you, informed about what’s happening and why. We were told when my husband had the syringe driver what it was for and why they were using it and have always been encouraged to ask questions or raise any concerns. All the best for Tuesday.
Pat
Hi Stu
A syringe driver is usually used to control the amount of pain relief given. It saves the patient having to have regular injections or pills. It does NOT necessarily mean they’re thinking end of life. My husband had one while he was having his SCT 4 years ago and again when they changed his pain medication last winter. I’ve been following your story and it all seems a bit puzzling so I can’t comment on what’s happening with your mum. The fact that an expert haematologist is now involved in her care, and that she’s still fighting both seem positive though. While there’s life there’s hope.
Pat
Hi Andy
I’m glad you did decide to pop back and that you’ve had a reasonable response to your latest treatment. You’re another of the people on this forum who have given a lot of encouragement to those of us who use it, even if we don’t post often, and I’d been wondering how you are when you’ve not been on for a while. Thank you for that. I hope you get the treatment-free break that you’re hoping for. And that you’re still managing to get away for the occasional holiday to Greece!
All the best, Pat
Dear Rosie, I had meant to add my best wishes for your expected new arrival to my last post. I hope that you’re able to put other things aside to concentrate on that and that all goes well. Perhaps too once the baby arrives your MIL will be able to take an interest especially if she can help even in small ways. All the best to all of you.
Pat
Hi Rosie, we’re now 5 years down the line from diagnosis. My husband tends to respond initially to new treatments but relapse quite quickly so he’s gone through almost all that’s available. Revlimid, which many people mention as a wonder drug, didn’t work that well for him and Pomalidomide not at all. I mention that only because we’d hesitate to rule out any treatment that’s offered unless there are very good reasons as it can limit your options. He’s been on Carfilzomib since just before Christmas and so far that’s worked quite well in spite of a very rocky start. The alternative that was suggested was to move to palliative care only. We asked for a second opinion and are very glad we did. As I said before everyone is different with this illness. His quality of life is quite good at present and he gets on with what he wants to do as much as possible,working round the two treatment days a week for three weeks in four. He’d actually managed to take up his hobby again in a small way during the first treatment regime and that made a visible difference to him so that he was in a much better place mentally before the SCT, after which he picked up remarkably quickly. Like your MIL he didn’t want to see anyone or have visitors or go anywhere when first diagnosed. And people getting on with normal life while living apparently unhealthy lifestyles upset him terribly. I do think it takes quite a lot of time to get over the initial shock, especially when treatment just makes you feel rubbish, and hope your MIL will start to feel better physically when she finishes the first course of treatment and then have a chance to catch her breath and recover her mental equilibrium a bit. All of this is also very hard for family and friends! Refuse to be put off by what can feel like rejection and encourage as much as you can. It’s really important to keep your own head above water and accept any support offered. I was initially sceptical about Maggie’s but have found the local centre an absolute godsend recently. Hope some of this helps a bit and that things improve with the completion of initial treatment and a decision made about what to do next.
Pat
Hi Rosie,
I’d agree with a lot that Paula has already said. Everyone who gets this seems to react differently to the illness itself and to the various treatments so it’s difficult to give general advice but there are things we’ve found helpful.
My husband is the one with Myeloma and he was very ill to begin with, hospitalised for three weeks with severe back pain and very sick from the cyclophosphamide and the painkillers and afraid he was about to die. Palliative Care sorted out the pain relief (they’re not just for end-of-life care). The sickness didn’t entirely go until he finished the initial treatment.
The nutritionist was very helpful with suggestions about loss of appetite. He hated the special drinks but as he said nothing tasted right she suggested, among other things, trying more unfamiliar foods which wouldn’t be so disappointing. He was referred to her by our local hospital but ask for a referral if they haven’t offered. Also, as Paula says, if side effects are causing problems keep on raising this until a solution is found.
It’s not really possible to advise someone for or against SCT. We weren’t really offered an alternative. If your MIL hasn’t yet had an appointment with the hospital where the transplant will be done then you and she may find talking to them makes the decision easier. They’re the experts. The consultant at the hospital where David’s was done spelled out all the implications, including the fact that in a small percentage of cases it could be fatal. (I still remember watching his face turn ashen and mine felt pretty much the same). But he followed that up with, “But I haven’t lost a patient yet and I don’t intend to start with you” and for some reason we simply put our trust in him from that moment on. The process was pretty grim and he felt really ill but once he started to recover he made really good progress and was home in 2.5 weeks. He didn’t get into complete remission but needed no treatment for 15 months during which time he felt reasonably well. Other people on this forum have said it wasn’t as bad as they had feared.
Mentally I think it’s always a challenge. Once David felt able to return to a favourite hobby he could lose himself in that and it made a huge difference. The Myeloma UK site has lots of information leaflets and video clips which are really helpful and if you call the nurses on the helpline they’re really brilliant. My husband doesn’t want to know too much detail so I’m the one who does the research and filters through to him what I think he needs to know or would find reassuring. And the two Myeloma info days I’ve attended have been not only informative but encouraging in the numbers of people who are living remarkably well with Myeloma who attend.
Hope this helps a bit. It’s not easy for either the person with Myeloma or family and friends but there is support out there.
Pat
Hello Jan.
It’s good to hear that the new treatment is bringing down the Myeloma levels, but the side-effects can be pretty hard to take. My husband is currently fast asleep in his chair, which is probably because of the breakthrough painkillers today but is often caused by the post-Dex crash. He’s on Carfilzomib and Dex, which brought his pp levels down a lot to begin with but caused initial kidney problems which fortunately they managed to resolve. It’s a bit of a roller-coaster and sometimes difficult to tell which drug is responsible for which side-effect. Yours were among the posts I found helpful and encouraging over the 5 years since he was diagnosed so it’s good to know how you’re getting on. I hope the treatment continues to work well for you and that the side-effects become more manageable as time goes on.
Pat
Glad to see some familiar names, Michael, David and Rebecca. I hope you’re all well at the moment. I’ve never really posted much – it’s my husband who has Myeloma – but have found posts and encouragement from many people such a support over the past 5 years through SCT and several treatments since then. I do wonder how Andy, Helen and Jan are doing. I’m not on Facebook either and reluctant to sign up for it. I don’t really like the new site either and am struggling to find my way around it. All the best to all of you, new folk as well as more familiar names, as we all battle on as best we can.
Pat
Hi Natalie
I don’t know anything about light chain Myeloma as it’s the other type my husband has. He only got 15 months treatment-free after his SCT in 2014. Neither Revlimid nor Pomalidomide worked for him so I know how difficult it can be when that happens as other people sometimes get years of remission on those too. However he’s done better on Velcade and Carfilzomib (so far) and is still here and comparatively well at the moment, which I don’t think his consultant expected. It takes so much of your strength as a carer just to support someone through all the ups and downs of this. Somewhere along the way I decided that anger was a drain on my energy that I couldn’t afford and that wasn’t helping either of us. It’s easier to say that than to let go of it though. I hope your mum’s consultant finds the best treatment for her and wish you both well.
Pat
Hi. My husband started on Carfilzomib and Dexamethasone in December. His kidneys were affected following the first dose as the creatinine levels shot up but they recovered after lots of fluid. Same happened after second dose. His blood pressure also dropped significantly at one point. He was admitted for a few days each time until they worked out lower dosage and how much fluid to give him. Now about to start Cycle 5 with 2 days a week at Day Unit for 3 weeks out of 4. Chemo doesn’t take long but fluid drip takes 3 hours in his case. We’re waiting for latest pp results but initial response was good. This is 5th line treatment for him so we’re grateful he got it. Side-effects other than the above mainly tiredness. If you do go on it watch for temperature spikes and confusion, which was how they picked up kidney problem, and phone the emergency number they give you right away if that happens. It’s not a time to worry about being over-cautious! Good luck.
