patsyann

  • 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…[Read more]

  • 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…[Read more]

  • 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 t…[Read more]

  • patsyann replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    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

  • patsyann replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    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 res…[Read more]

  • 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 tak…[Read more]

  • patsyann replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    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…[Read more]

  • 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…[Read more]

  • patsyann replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    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 int…[Read more]

  • patsyann replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    Sorry, Teresa, that last post should have been to Maureen and adelaide56. Brain not functioning properly.

    pat

  • patsyann replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    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 month…[Read more]

  • 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 gre…[Read more]

  • 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…[Read more]

  • patsyann replied to the topic Bone Issues in the forum General 5 years ago

    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…[Read more]

  • patsyann replied to the topic Bone Issues in the forum General 5 years ago

    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…[Read more]

  • patsyann replied to the topic Bone Issues in the forum General 5 years ago

    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…[Read more]

  • patsyann became a registered member 5 years ago