My office last night. Hb crashed to 5.5 which is apparently not good - ended up in Epworth ED. One unit blood last night, bone marrow biopsy and two more units of red cells/bloods today. Only 5 days to departure - haematologist committed and still determined to get me on a plane on Monday.
Thought I'd do a follow up on this post now almost 12 months old.
I didn't get on that plane.
Another bone marrow biopsy and a diagnosis of "Acute Myeloid Leukaemia" was confirmed.
I remained in Epworth ED for two days and was progressively transfused with five more units of packed red cells and one platelet pack to push Hgb to 100 and platelets from 24 to 100. This has got me mobile and ironically feeling well - completely normal and certainly better than I have for weeks. Crazy to be feeling so well.
Went home for the weekend and a family Father's Day celebration before heading to Royal Melbourne for aggressive chemotherapy starting on Monday - not the accommodation I had planned.
Worst comment from one of the haematologists when I commented that "I was supposed to be in Dubrvnik today" - "Well, I wouldn't bother renewing my passport if I were you!" He was an exception - the other haematologists, registrars, nurses all were absolutely amazing with their empathy and care.
The chemotherapy progressed as planned and I progressively felt worse and worse, loss of appetite, the feeling of the worst hangover you've ever had but no nausea just feeling absolutely horrible. The total loss of sphincter control added to my misery. However the worst of it only lasted a few days and I started to feel better.
I'd now lost over 10kg.
Finally by 20/09 my White cell count and neutrophils fell to zero.
"Ah good, they'll bounce back in a couple of days"........
I was now confined to my room and visitors were actively discouraged. Mrs C was the only person permitted to visit.
Haemoglobin and platelets in free-fall so I received multiple pack red cell transfusions and platelet transfusions.
A week later "All good, any day now for bone marrow recovery"
Another week later "Won't be long now"
Another week "yeah, sometimes can take a little longer for recovery......" but the haematologists were sounding more and more defensive as I quizzed them on what "a couple of days" really meant.
The irony was that, apart from repeated falling of haemoglobin (normal is 140+, I'd drop 80-70-60 then get transfusions) no WCCs, few platelets (would often fall to 10 or less) and no neutrophils I felt fine. Nurses only popped into my room every 2 hours, otherwise I was left alone as I was "so well"! But I confess the stress of waiting was starting to sap my optimism no matter how often I played my theme song"Tub Thumping" by Chumbawamba ("I get knocked down, I get up again, you're never going to keep me down"). Hospital food was terrible, always cold by the time it was delivered but Mrs C brought in delicious soups and pasta etc that could be heated in a Patient Lounge microwave.
A bone marrow biopsy on 5 October confirmed that the chemo had been successful (so I was in the 40% that responded to the clinical trial treatment) and that I could be classified as being in remission. Yippee, but when do I see a bone marrow response?
"Soon....."
Thu 13 October neutrophils 0.4. Haematologists were smiling broadly when they can in on rounds (I hadn't seen them smile in weeks). I just sat on the edge of my bed, tears pouring down my face in total relief. Everyone, doctors and nurses (absolute angels, the lot of them) cheering and happy at the response.
Best comment was from a nurse who'd looked after me in the early stages of my chemo decline and through the first week of zero neutrophils - she'd been assigned to other patients (nurses with different skill sets are assigned to patients who need them, I was not in need at that point. She was listening at "handover" in the corridor and heard "coriander's neuts are 0.4") and she rushed into my room exclaiming loudly "0.4 how good is that!" and a high-5, of course reducing me to tears again - during chemo confinement one's emotions tend to be quite raw, close to the surface and easily triggered.
Over the next few days, the neutrophil count slowly climbed towards 1.5 and platelets towards 50 - the trigger values for discharge.
Monday Oct 17 and I had a CT scan of my abdomen, ultrasound of my liver - all in perfect health. (Blood tests every day confirmed that as well).
Wednesday 19 October yet another bone marrow biopsy, this time to assess its ongoing recovery.
This was followed by a double pack of red blood cells and a pack of platelets.
As an aside the total number of red cell transfusion packs administered since admission 31 August was 20, total platelet transfusion packs numbered 6.
Massive thanks to all those anonymous blood donors without whose generosity I wouldn't be here.
Ok you can go home now! Unbelievable! Seven weeks in Ward 7B - apparently one of the longer stays this year.
Transplant head came in with more interesting news. Because I'm in good health (ie no co-morbidities, not obese, diabetic etc) I'm to be triaged for an allograft bone marrow transplant. I'm three years older than at my stem cell transplant and transplants are generally not offered to patients over 70 but I've been accepted as long as I accept the increased risk of mortality.
The donor tissue had been sourced and was arriving in the next couple of weeks and would be tested and checked for final matching suitability.
All being well I was scheduled for admission for a transplant on Boxing Day.
Twice weekly visits to Peter Mac continued for more blood tests.
Felt really welly through December nad Christmas.
I was admitted to Royal Melbourne's ward 7B on New Year's Eve 2022 for my bone marrow transplant. My room was in total isolation - no visitors (including family), no leaving room to exercise, all staff in PPE when dealing with me. Changes of clothes, other items etc were handled remotely: Mrs C would bring a suitcase to reception at the ward, nurse would bring it to my room where I would unpack the case, place in things to go home for washing etc and the nurse would take that back to Mrs C at reception.
After 4-days of chemo, my transplant was injected (looked like a platelet infusion!) and we were underway. When the doctors warned me that a bone marrow transplant was much harder than the stem cell transplant they weren't kidding. Of course all my figures went to hell, I was receiving blood transfusions every 2-3 days as well as platelet transfusions a couple of times a week.
Chemotherapy infusions continued for a few days, then I was started on cyclosporin IV 24/7 along with other anti-rejection drugs orally. Cyclosporin is administered through my central IV line in a glucose solution which would cause the IV pump to alarm "occluded" at least hourly all day and night. A nurse would come in and reset the pump and I'd be good for another hour - great for getting any rest! Being confined to my room made exercise a bit of a challenge- four steps, turn, four steps back, turn.....
Certainly I felt like cr*p as my neutrophil count went to zero as I waited for the transplanted cells to get to work. About 4 weeks in I was starting to feel better but had no appetite, was losing weight due to no exercise. The cyclosporin was switched from IV to oral because it pushed my blood pressure up. Combined with a platelet count in the teens or less, it was more or less inevitable that the next complication would arise.
About the same time I developed a severe headache on my right side and what was bizarre was that as nurses walked past me from right to left, they disappeared from view even though it didn't appear to me that I'd lost any vision! As soon as I reported this to my doctors, I was taken down for a CT scan which confirmed a right side major subdural haemorrhage. I was moved to the neurology ward - OMG! A truly kafka-esq experience. The ward was about 20 beds with patients with all sorts of conditions some of which caused vocalisations and very odd behaviours. The door to the ward said "keep closed as patients are liable to wander"! However, now that I was in the neuro ward, I wasn't in isolation/quarantine so visitors were allowed and Mrs C and my three sons were able to visit. A second CT scan showed no improvement and a specialist neurosurgeon said I needed the haemorrhage to be drained urgently. I was put on the list and fasted for surgery the next morning.
Next day, there was to be no surgery performed as I'd been bumped down the list by other cases and that there would be at least another 24-48 hour delay before I could be operated on. Fasting would continue. The irony was that my surgeon had space on his private list but the public list was full. After considerable back and forth with Mrs C having to fight the system, I was transferred to Melbourne Private next door next morning and on the operating table within a couple of hours. I woke up with a couple of (closed) holes in my head, a row of staples and a much reduced headache. My vision returned a day or two later and I was transferred back to my isolation in Ward 7B.
Finally after seven weeks, my blood picture was looking better and I was discharged. I'd lost weight dropping from 88kg to 78kg as a result of inappetance coupled with truly atrocious food: even the doctors and nurses agreed the meals were terrible.
Once home I started to eat better. Initially I couldn't walk more than about 20m and had to be chaired around on my twice weekly visits to Royal Melbourne and Peter Mac. Steadily my fitness returned and I was able to walk to my appointments within Peter Mac and could even walk about 500m without too much difficulty.
The 50th year reunion of our cohort passed without me being able to attend - I couldn't have participated in the dinners and social functions anyway as my neutrophil count was still very low. It was great to have a couple of my cohort visit me after the reunion to have some contact.
So over the next few months April to June my blood levels improved. A bone marrow biopsy in late March showed no sign of the leukaemia and the transplant seemed to be settling in.
I was started on a clinical trial to enhance my recovery in June and some stumbles appeared with my neutrophil levels dropping necessitating ceasing treatment for a few days and getting daily Filgrastim injections into my abdominal wall administered by Mrs C. Neutrophil counts rose and my clinical trial resumed. I was actually feeling well and getting more active. My hair had fallen out at the begriming of the transplant but had grown back quite thickly and wiry with a bit of a wave in it.
Then in early July my routine weekly bloods showed a marked drop in both Hb and platelet counts - and I was running out of breath going up a single flight of stairs. I received a double blood transfusion followed by a couple of platelet transfusions to get me ready for a bone marrow biopsy which was performed 48 hours later.
July 20th I had my review with two haematologists, trial team co-ordinator and transplant specialist Ashish Bajel all in attendance.
The transplant has failed.
The leukaemia has returned occupying about 10% of my bone marrow. Its return in 6 months surprised the team as it was one of the shortest duration of response.
Unfortunately due to the leukaemia's aggression, treatment options have become severely limited. It's resistant to current chemo as it seems to be able to mask itself.. Apart from that they tell me I'm in good health with no other signs of disease or co-morbidities anywhere.
Realistically, my bone marrow will continue to be taken over by the leukaemia. The current plan is for bi-weekly blood tests (on a Sunday when a Peter Mac nurse-at-home comes to change the dressing on my Hickman central line) followed my most likely a blood transfusion on the following Tuesday. Having had so many blood transfusions, cross-matching is becoming more of a challenge to be able to transfuse me without an adverse reaction. At some point soon this will no longer work so plans are already in hand for a referral to and consultation with palliative care specialists for the time where Mrs C can no longer look after me at home.
We have my practice for sale. Mrs C has had to do an enormous amount of work co-ordinationg sales people, accountants and lawyers: the stress on her has been severe and she's an amazing person for being able to cope with it all and look after me.
My 72nd birthday was a couple of days ago and celebrated quietly at home (Buzzard missed it again <g!>). Always the optimist. we've also booked the Stokehouse for my 72nd birthday luncheon next Sunday which gives me something to look forward to.
So there we go........ a bit of a nuisance all in all. I really wasn't expecting that at all.
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