At last, something to write about. Dr.Ch sent me an article from The Lancet Haematology "Management of patients with multiple myeloma during the COVID-19 pandemic". The two main points are:
(1) to postpone transplant for up to six cycles of chemo, which for me means two more i.e. ten weeks (late July) if we went straight into Cycle Five next week. Or longer if we can hold off the start, and the blood results due tomorrow will help decide that. Patients should be tested for SARS-CoV-2 infection before transplant (surprise!) My feeling is still that if at all possible we should delay transplant until we're well out of the pandemic, and that could be a year or more. On that basis, I might be into second line chemo at least .
(2) to reduce steroid dosage because of negative effects established during earlier coronavirus outbreaks
There's also a suggestion that Velcade (Bortezomib) should be switched from subcutaneous injection to oral so as to reduce hospital visits. However, a quick search found nothing beyond a mention of a "mid-stage study" of an oral form of Bortezomib so I doubt that it's available. The other possibility mentioned is self-injection at home which I'd be happy (well, prepared) to do, but if the routine at Springfield is anything to go by, the injection has to be prepared within a very short time of the injection so I'm not sure how that would work at home.
Monday, 11 May 2020
Saturday, 9 May 2020
09/05/20
Phone consultation with Dr.Chowdhury now put off until Monday.
Yesterday afternoon Sue and I mowed the grass on our big back lawn - first time I've used a lawnmower for well over a year. The big one is self-propelled with a push-button start and a lithium battery. I haven't been able to cope with a pull-start since I broke my left shoulder back in 2017. It has no manual choke (automatic, I presume) and no primer bulb either and I was a bit concerned about stale petrol still in the tank, but I topped it up with fresh(ish) fuel and it started with a cloud of blue smoke on the fourth attempt. Not bad, under the circumstances.
The problem with this mower is that it's either stopped or full speed ahead - almost impossible to find and hold a speed somewhere in between. Full speed is a little too fast for me now, so I have trouble keeping up and if I drag behind that lifts the front wheels so the blade doesn't cut properly.
Anyway, that got me down to the dragonfly pond and pleased to see a few dragons and damsels about this early in the year. Now to bed, and I hope I wake up without too much damage from the afternoon's efforts.
Yesterday afternoon Sue and I mowed the grass on our big back lawn - first time I've used a lawnmower for well over a year. The big one is self-propelled with a push-button start and a lithium battery. I haven't been able to cope with a pull-start since I broke my left shoulder back in 2017. It has no manual choke (automatic, I presume) and no primer bulb either and I was a bit concerned about stale petrol still in the tank, but I topped it up with fresh(ish) fuel and it started with a cloud of blue smoke on the fourth attempt. Not bad, under the circumstances.
The problem with this mower is that it's either stopped or full speed ahead - almost impossible to find and hold a speed somewhere in between. Full speed is a little too fast for me now, so I have trouble keeping up and if I drag behind that lifts the front wheels so the blade doesn't cut properly.
Anyway, that got me down to the dragonfly pond and pleased to see a few dragons and damsels about this early in the year. Now to bed, and I hope I wake up without too much damage from the afternoon's efforts.
Thursday, 7 May 2020
07/05/20
I had hoped to report on the promised 'phone consultation with my haematologist, but unfortunately it didn't happen as promised. Try again tomorrow, I suppose.
Good news about the near neighbour with suspected COVID-19 - his test was negative and I hear he's feeling better. Can't help wondering exactly what it was that sent his temperature up above 40C in quick time.
Good news about the near neighbour with suspected COVID-19 - his test was negative and I hear he's feeling better. Can't help wondering exactly what it was that sent his temperature up above 40C in quick time.
Wednesday, 6 May 2020
06/05/20
Went to Springfield Hospital yesterday for my three-weekly bloods to be taken - results expected Friday. All nurses I saw dealing with patients were wearing face masks (as I was) but other staff weren't using any PPE.
Had a reply from Dr.Ch to my email of a few days ago - he suggests a 'phone consultation later today or tomorrow. Of course the three problems (left hip / low back, left knee, stiff neck) have all improved a bit. But I remember the two lesions / pathological fractures I believe I had before the big left hip lesion appeared back at the beginning. One in upper back, the other in a posterior rib (I thought it was the shoulder-blade). They were both bad for two or three weeks and then went away by themselves...
It's almost a relief to be able to think about myeloma again instead of COVID-19. And on that point, a near neighbour has developed a high temperature (40.3 C is the last figure I've heard) which came on very quickly. He's getting a virus test early this morning (that's early by normal standards, not mine). Fingers crossed for a negative result - it would be a little too close for comfort otherwise. Hope he's OK.
Had a reply from Dr.Ch to my email of a few days ago - he suggests a 'phone consultation later today or tomorrow. Of course the three problems (left hip / low back, left knee, stiff neck) have all improved a bit. But I remember the two lesions / pathological fractures I believe I had before the big left hip lesion appeared back at the beginning. One in upper back, the other in a posterior rib (I thought it was the shoulder-blade). They were both bad for two or three weeks and then went away by themselves...
It's almost a relief to be able to think about myeloma again instead of COVID-19. And on that point, a near neighbour has developed a high temperature (40.3 C is the last figure I've heard) which came on very quickly. He's getting a virus test early this morning (that's early by normal standards, not mine). Fingers crossed for a negative result - it would be a little too close for comfort otherwise. Hope he's OK.
Monday, 4 May 2020
03/05/20
Earlier today I sent Dr.Chowdhury an email because a few things have been going on that I'm starting to get concerned about. Here's the main part of the message:
For a few weeks now I’ve been having trouble with my left knee and left lower back. With the PPs undetectable and the myeloma presumably inactive it seems unlikely that these problems could indicate new bone lesions developing but…
Left knee - it's the joint I have for years thought likely to be first in line for replacement if I ever get that far. There is an erratic tender spot (sometimes I can feel it, sometimes I can’t) if I run a finger down the inner edge of the patella, and another tender spot and slight swollen bump in the hamstring more or less below that. Range of movement is a little less than normal (and than the other leg) and the knee sometimes gives way while walking. I haven’t gone up or down stairs without at least one hand on a rail since this started.
Left lower back - just stiff and sore. Not too far away from that big left hip lesion that started all this off. As for the knee it feels like a muscular / soft tissue problem rather than anything in the bone, whereas with the hip lesion I knew that it was something wrong inside the joint. Anyway, putting this together with the bad knee makes getting out of a chair difficult and slow.
Generally these two things are worse in the morning and to some extent I can “walk them off” during the day (but not the getting up from sitting thing).
A stiff neck (again mainly left side) - to some extent explained by having to do a job or two around the house above head level - something I’ve never found easy. That’s improving now but more slowly than I think it should.
Under normal (and pre-myeloma) circumstances I’d have taken these problems to an osteopath, but that’s impossible under lockdown. My instinct is that they are all muscular / soft tissue and not myeloma-related but I’m starting to wonder whether they should be checked out just in case. What are your thoughts?
Any "checking out" would mean some sort of imaging and that would require at least one extra hospital visit with the associated coronavirus risk - something to be avoided if possible. We'll see what Dr.Ch has to say about it.
On top of all that, my left big toe (the one that tends to get an involuted nail, although that's OK at the moment) has developed a persistent dull ache that seems to be right in the middle. No external tenderness or obvious inflammation. I'm just hoping that will go away by itself, can't believe it's anything to do with the myeloma.
For a few weeks now I’ve been having trouble with my left knee and left lower back. With the PPs undetectable and the myeloma presumably inactive it seems unlikely that these problems could indicate new bone lesions developing but…
Left knee - it's the joint I have for years thought likely to be first in line for replacement if I ever get that far. There is an erratic tender spot (sometimes I can feel it, sometimes I can’t) if I run a finger down the inner edge of the patella, and another tender spot and slight swollen bump in the hamstring more or less below that. Range of movement is a little less than normal (and than the other leg) and the knee sometimes gives way while walking. I haven’t gone up or down stairs without at least one hand on a rail since this started.
Left lower back - just stiff and sore. Not too far away from that big left hip lesion that started all this off. As for the knee it feels like a muscular / soft tissue problem rather than anything in the bone, whereas with the hip lesion I knew that it was something wrong inside the joint. Anyway, putting this together with the bad knee makes getting out of a chair difficult and slow.
Generally these two things are worse in the morning and to some extent I can “walk them off” during the day (but not the getting up from sitting thing).
A stiff neck (again mainly left side) - to some extent explained by having to do a job or two around the house above head level - something I’ve never found easy. That’s improving now but more slowly than I think it should.
Under normal (and pre-myeloma) circumstances I’d have taken these problems to an osteopath, but that’s impossible under lockdown. My instinct is that they are all muscular / soft tissue and not myeloma-related but I’m starting to wonder whether they should be checked out just in case. What are your thoughts?
Any "checking out" would mean some sort of imaging and that would require at least one extra hospital visit with the associated coronavirus risk - something to be avoided if possible. We'll see what Dr.Ch has to say about it.
On top of all that, my left big toe (the one that tends to get an involuted nail, although that's OK at the moment) has developed a persistent dull ache that seems to be right in the middle. No external tenderness or obvious inflammation. I'm just hoping that will go away by itself, can't believe it's anything to do with the myeloma.
Friday, 1 May 2020
01/05/20
Average number of posts per month September 2019 to March 2020: 42 (there is no particular significance to this also being the answer to the ultimate question about life, the universe, and everything - as far as I know...)
Number of posts last month April 2020: 20. Fewer than half. I think that says it all about the current state of limbo where very little is happening, and most of what there is to write about is COVID-90 rather than Myeloma.
Number of posts last month April 2020: 20. Fewer than half. I think that says it all about the current state of limbo where very little is happening, and most of what there is to write about is COVID-90 rather than Myeloma.
Subscribe to:
Posts (Atom)