Dom is getting stronger day by day. His physical therapist has basically made Dom his “project”. Dom almost feels guilty, as the guy pretty much ignores everybody else when we’re there 3 days a week.He loves his rollator and doesn’t use a w…
Nothing Can Stop Us Now – Saint Etienne
My light chains have opted to split the difference – 2 more tests both giving results almost precisely in between the previous high and last month’s dramatic drop. What that means is not obvious. The hospital Dr sends my GP a letter after each appointment, and I receive a copy. Last month he described me as a “difficult case”, which I think means it is unclear how we proceed, rather than that I am a pain in the arse.
I’m not quite triggering any single ‘reason to treat’ criterion. My κ/λ ratio, which had soared well over the 100 threshold, is back down. And I’m not reporting any symptoms. Indeed, I’ve just been on a walking holiday in the Spanish Picos de Europa mountains, so I must be in reasonable shape. I did find myself puffing on the uphills, and that may reflect the most significant bad omen for now, which is my relentless anaemia.
My haemoglobin level is moving from normal-for-me (which would not be normal for you), downwards to not-good-for-anyone. If it continues to fall, it will become a reason to treat in its own right. Being consistently significantly anaemic is not much fun. (That’s the boundary of my Saint Etienne infused positivity. That and achy hips.)
So, we wait on more and frequent blood tests, and another MRI. Back in the MRI machine, for a whole body scan. The outcome of which can be compared to the one I had last December. This really is the full English breakfast of scans – neck clamp, head clamp, weights and sandbags everywhere. Contrast dye injection, prolonged breath holding, the lot. And so so noisy. Still, better this time without the blocked-nose-sore-throat cold, which made the previous experience that much worse.
I was also booked in for a bone marrow biopsy but the consultant decided that having a BoMB right now is not really worth it. (I can save my anticipation for the ones that will almost certainly be required for the clinical trial I will likely find myself on at some point soon enough.) In itself, cancelling that appointment is something of a result.
In other news, I’ve been heartened to read several articles about a new treatment called “CAR T-cell therapy”. It involves the patient’s own immune cells being harvested, modified to attack the cancer cells, and then re-infused. There have been encouraging trials on myeloma patients, and the process has just been licensed to treat one type of leukaemia. It is quite possibly going to become a functional cure for some (many?) people. (Putting the Car-T before the hearse?) I just need to hang on long enough. In that context, my endlessly dithery disease is exactly the right kind to have. Long may the dithering continue.
I just got a call from the Slidell Cancer Center….NO NEW LESION! The pain in his right hip is probably a pinched nerve.The LEFT hip has improved! (Maybe the Zometa is working already)Music to our ears!(Our patient has been in bed all day, but h…
He had been feeling very weak and woozy since last week. He basically spent the weekend in bed.
On Monday, we headed into Bogalusa to have his weekly blood work done. I dropped him off at the door to shop and returned to find out that he couldn’t make the walk to the lab. They kindly gave him a wheelchair.
Yesterday was a FULL day. He had an MRI appointment at 11:30 at the hospital. Then, the Cancer Center nurse asked us to come right over. She had looked at his blood work to see that his Potassium was way down.
So, he got his Velcade injection, followed by a 2-hour infusion of Potassium and liquids. (Saline) Our Oncologist was on vacation (again), so one of his associates gave him a prescription for daily Potassium supplements.
He felt GREAT last night.
He felt GREAT this morning. Got out of bed, made his own breakfast, watched television, then got up, started to walk and got dizzy.
There’s no doubt that his blood pressure dropped and he was too much in a hurry to get moving. So…. he’s promised me that he will sit for awhile. Slowly stand for awhile. THEN walk.
So, this is all very frustrating, but we seem to be getting somewhere with the Potassium and Fluid infusions. And happily, there seems to be a better communication with his health care team.
Back to the Cancer Center on Friday morning for Velcade, then he’s got the next week OFF. YAY!
It’s been a rough week.
Dom’s 3 1/2 inch lesion is on his LEFT HIP.
This week, his RIGHT HIP started killing him.
I sent an email to our liaison nurse at the Slidell Cancer Center on Wednesday afternoon to request an MRI. (Which is how they found his hip lesion)
She didn’t bother to return my email or call us.
Went to Slidell for his chemo on Friday. Dom went into our doctor’s office to bitch.
Doc was OFF for the day. Apparently, there were NO doctors on Friday.
He said that he wanted an MRI- now!
Finally, one of the nurses told him to go the Emergency Room. They would be expecting him.
Sure enough, they got him into a room quickly.
TWO HOURS LATER, the ER doc said that they had FINALLY got a hold of his Oncologist. Said that there was no need for an MRI until next week. The ER doc apologized for the lack of communication. (He was a sweet guy- loved him)
It turns out that our liaison did, in fact, see the email. Apparently ignored it.
When we Igot home, there was a phone message from her, asking how it went today. You think I’m going to return her call? NO EFFING WAY.
So, MRI is scheduled for Tuesday.
We switched from NOLA to Slidell for convenience. We’re having 2nd thoughts. Going to see our Tulane Oncologist on August 31st. She’ll decide if he’s ready for the SCT after doing a bone marrow biopsy and check his M-Spike.
Please not I accidentally published this blog early because I have limited control over my fingers; this is the final version (unless I reread it during a bout of insomnia and decide to correct my typing errors). University College London Hospital acted with the greatest of haste following my MRI and all round bad results. […]
My body’s made of crushed little stars and I’m not doing anythingMy body’s made of crushed little stars – MitskiCheck up … KFLC = 381 …I’ll keep this brief, jumbled and confusing – in honour of today’s appointment.When I arrive, at 11:15, DrC is cl…
Solitude is bliss – Tame Impala
|The drainpipe, Goatchurch|
For the spine one, I have to have my neck restricted with a clamp across my throat. It takes a few goes to get my back flat enough to actually fit in the clamp so that it can lock in to place. It’s not a lot of fun lying on the gurney with one’s head clamped in place. I’m not prone to panic or to claustrophobia, which is a good thing because the inside of an MRI scanner is pretty close. It always reminds me of the “drainpipe” one has to wriggle through at the bottom of Goatchurch Cavern in the Mendips (I can’t quite believe I used to think that was fun!).
The MRI is noisy, so inside my head clamp, I’m wearing headphones, through which I can also hear the technician. Because there can’t be any metal bits, the headphones are pneumatic – consisting of hollow rubbery hoses rather than wires – like one used to get on aeroplanes, long ago. The same is true of the panic button they place in my right hand – a squeezable rubber ball attached to a rubber hose. They offer me music, but previous experience tells me that’s a bad choice. For a start the machine is so noisy one can hardly hear the song well enough to enjoy it. But worse than that, there’s the risk I find myself being subjected to James Blunt, or something. Would it be OK to press the panic button because I wanted them to change the tune? I’ve never squeezed the panic button before, but I do so today almost immediately, before we’re really started, when I realise that the cold I have come down with, combined with the head clamp, means I am in danger of drowning in snot. To be honest, blowing my nose doesn’t help much (Rib pain means I’m not so good at vigorous nose blowing anyway – or sneezing, or coughing, or laughing). In the end I resign myself to mouth breathing. My throat was pretty sore before we start; by the time we finish it is raw.
|Whole body MRI apparatus (with person inside)|
The whole body scan requires bits of kit all over me, meaning that I am now effectively tied to the gurney at chest, wrists, thighs and ankles with all sorts of pads and bits of stuff on and around me. I’ve also got another bit added to the top of my head clamp so my head is basically encased. This scan is going to take around 45 minutes. As the gurney slides into the scanner, the panic button hose catches on something and I feel it “pop” out of the button. I better not panic then, because I can’t move, and no-one can hear me.
This MRI is particularly noisy. It has repetitive cycles of beeping, backed up with low jolting bass that is so powerful it physically shakes my body. It reminds me of the techno room at Ministry of Sound (c.1996). As one entered the room, emerging from an almost pitch dark corridor, one was met by minimal white and strobe lighting, and pulsing techno that went beyond any sense of melody to just an all encompassing vibrating, thumping sound. This MRI seems a bit like that. But maybe it’s just because I am wrapped in this peculiar head gear, and drowning in snot. 45 mins passes. But I’m glad when it’s all over. Relaxing it is not. With myeloma, even lying still can be hard work.
Did I mention that I also have to have some marker dye injected, so I have a canula in my right forearm? Or that I periodically have to hold my breath for various intervals while the machine scans my ribs?
I have at least learnt from experience to arrive wearing trousers with no metal – no zip, no metal fly buttons, no rivets – which means I can go through the procedure clothed, rather than in one of those bum-hanging-out-the-back gowns hospitals have to offer. Small mercies.
I’m back in clinic on Friday. I suspect the full MRI report won’t be available. But given the amount of problems I have been having with my ribs these last few weeks, I’m not overly optimistic about how this clinic appointment is going to go. I’ll let you know!
The International Myeloma Working Group (IMWG) has issued practical recommendations on the use of MRI in patients with multiple myeloma (MM) and in patients with asymptomatic disease, such smoldering MM and monoclonal gammopathy of undetermined signifi…
The quick deterioration of my movement over the last month, has been an unwelcome surprise and it has been something of nightmares. Cancer I can handle. Being bed ridden and unable to climb into the shower? Not so much. Two months ago, I was worried that my movement had improved to such a point that […]