Summary Text

SUMMARY: First diagnosed with myeloma October 2011. Recruited onto clinical trial Myeloma X11 (Lenalidomide) at Bristol Oncology and Haematology Centre. First High Dose Therapy and Stem Cell Transplant (HDT&SCT) in July 2012. On maintenance until June 2017. June 2018 recruited onto Myeloma XII trial (Ixazomib). December 2018 Second HDT&SCT. On maintenance until February 2020. August 2020 Commenced treatment involving Daratumumab. April 2021 relapsed. June 2021 recruited onto Cartitude 4 clinical trial and infused with CAR-T cells in October 2021. My own immune system is now fighting the cancer . I am exceedingly fortunate.


Monday, 3 December 2018

Admission

3 December  It was an early start this morning in order to attend my appointment at The Bristol Haematology and Oncology Centre (BHOC).  I had my Peripheral Inserted Central Catheter (PICC) line installed.  This is a relatively painless procedure which involves finding a suitable vein in my arm and then passing a double tube to just above my heart.  It was most encouraging to have this done by the nurse who performed the same process for me 6 years ago !  The technology which is used now has changed and no longer requires an X-ray to check the positioning.  The PICC will now be used for all blood tests and for infusion of all medications and my stem cells.  This saves becoming a pin cushion !

The two connections make it possible to have simultaneous infusions.

Then it was up to the ward where I was admitted, had blood samples taken, and then allowed to go home.  They didn't wish to start my chemo treatment today !  Poor Margaret will therefore have to take me back again.

Tuesday 4th
Again admitted to ward, documented, yet more blood tests and allocated a bed in a two man room.  Once my immune system deteriorates, I will be moved into a single room. Meanwhile, food remarkably good!

Wednesday 5th Day -1
 Started at 7am with yet more blood tests. The night had been 'OK' given a less than comfy bed!  As expected, most of the morning has been in preparation for the Chemo.  This involved being infused with 2 litres of saline.  After lunch came the Chem called melphalan, followed by yet more saline.  The intention is to ensure that I was fully hydrated.  The significance of the PICC is now clear.  All this fluid is infused via the PICC.  Problem is fluid in is fluid out, and the nurses need to measure this.  I leave the rest to your imagination!  Tomorrow will be the first day when my stems are returned....

Thursday 6th - Day 0
Had to wait until after 24 hours from Melphalan so stem cells started at about 2-30pm and lasted to almost 8pm.  I received multiple premeds including Pethadine and Piriton the effect of which was to make me feel tired. Stem cells arrived frozen in liquid nitrogen in a  flask looking like an   undernourished dalek! One by one each had to be checked by TWO nurses to make sure they were mine. Then each bag had to be defrosted in a water bath. Finally one by one each bag was connected to a pump and thus into my PICC line.

Bag of stem cells looking like strawberry sorbet!

By the end of 10 bags I was pretty well exhausted and my blood pressure has risen only to slowly settle back later that evening and through the night.  Not only was I tired but so must the nurse who managed the process.  She only just managed to leave the ward at her alloted time - she must have been exhausted.  From everyone fantastic care.  I can't fault world-class treatment.

Friday 7th - day 1
Moved from a 2 bed bay into my own room in preparation for when I become neutropenic (inability to fight infection). In the afternoon had the remaining two bags of stem cells infused so I've now had the lot !  Initial indications are that I will be allowed home - but must return prior to becoming neutropenic of course.  Feeling much better than I did last evening and my observations (blood pressure etc) are good.  My daily blood tests are showing the effects of the melphalan though !

Saturday 8th - Day 2
Allowed to go home until Monday. Release from ward delayed due to need for medications be prescribed.  Large bag of tablets eventually appeared.  In the middle of waiting, the decision was taken to move me to yet another room (my third!).
Arriving home was bliss - a strange sense of normality.

Sunday 9th - Day 3
A relaxing day with only a few emails to catch up on a generally just glad to be home.

Monday 10th - Day 4
Margaret drove me back to the BHOC arriving about 10am.  On arrival on the ward, I was welcomed by so many of the staff.  Soon my observations were taken (OK), then blood tests, and a visit by one of the doctors.  I'm certainly being looked after.  Noted that I've lost some weight. Tonight will be the first in this room. It is much bigger then usual capable of accommodating two double beds!  Needless to say I only get a 3 foot hospital bed.  The room is well furnished and even has an exercise bike.  There is another device with pedals but its purpose is unclear. I of course have my own en suite bathroom (wet room no less). I also have an excellent view. Perhaps the most significant feature is that entrance is though an airlock door.  This may be to reduce the risk of infection, or that the preservative used with my stem cells makes me smell of sweet corn! Interestingly, I can't detect it.

Tuesday 11th - Day 5
Further indications of mucocitis. Nose containing blood clots, mouth roughening but not yet sore, and runny tummy very apparent.  All this confirmed by my blood test results which show a continued slide to neutropenia.  Expect it tomorrow!  I'm so lucky to have such caring nurses - even if I get woken at 3am for observations!

Wednesday 12th - Day 6
Much to schedule I have become neutropenic and may now expect an infection.  Everything much the same.  Feeling listless, sleepy and subject to runny tummy. I keep reminding myself it will all be worthwhile.

My enormous room complete with exercise bike


and my en suite wet room
Thursday 13th - Day 7
Little has changed but I had an extra blood sample taken for type cross-match.
Blood result continue to show the effects of the chemo.  As yet no serious infection.

Friday 14th - Day 8
Received the platelet infusion during the evening to hopefully protect me from any bleeding.  Continue to receive GCSF growth factor to encourage the stem cells to engraft and thus recommence their job.

Saturday 15th - Day 9
Seem to be feeling a little better. Doctor expressed concern about raised CRP in blood test. Might suggest impending infection.

Sunday 16th - Day 10
Eating better today. Doctor pleased to note that my CRP had reduced. Might not get the infection. Doctor noted further signs of platelet deficiency so received another infusion in afternoon. In evening discovered hair becoming loosened - entirely predictable though!

Monday 17th -Day 11
At this morning's doctor round I received the extraordinary news that, all being well, I will be discharged tomorrow afternoon. This will be subject to a predicted rise  in my neutrophils.  I can't wait !   In the afternoon I was honoured to receive a visit by my consultant.  Life's good.

Tuesday 18th - Day 12
Details of my morning blood test finally came back and with the very good news that I am no longer neutropenic. The change in 24 hours is remarkable.  Margaret battled her way through the squally rain, collected me and then battle us home.  After a cup of tea, she kindly shaved off my hair. What a relief, no more hair on my pillow!

Conclusion
The doctor expressed concern that my platelet level had not stabilised so I will need to attend the day unit on Friday.  All being well a simple blood test will confirm everything is OK.  I can then have my PICC removed and celebrate a quiet Christmas at home.  All in all despite this being a second transplant which was expected to be a harder ride, I only spent a total of 14 day in hospital.  My memory will one of world class treatment and amazing care.  Thanks BHOC !