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 !

First Randomisation

Since my last post, life has been somewhat fraught.  I had two tests to be completed being lung function and a echocardiogram.  These went well confirming that my lungs and heart are in good health prior to further treatment.

On Monday, I had to provide a last blood test to check, amongst other things, that my paraprotein level (a measure of myeloma activity) was within the specified limits of the Myeloma XII trial.  Having been stable for some time at a count of 6, it had risen to 11 and thus, apparently, beyond the limits.  I'm not entirely surprised because I'd been off any treatment for a month but this could have reduced my treatment options.  Yesterday I returned for a further test and fortunately the count is now 10 and within the limits thus allowing the next stage to proceed.  Any research of myeloma will show how patients suddenly find that there are fewer options so initially to be told that I might not be able to continue in the trial was very worrying.  This affects not just me but also Margaret and our two sons.  Over the last week both Chis and then Nick have found time in their own busy lives to travel up and see us.  It has been so good to see them.  Thanks guys.

This morning, my trials nurse phoned to confirm the result of my randomisation.  At this stage in the trial, two options are possible;  Firstly conventional high dose therapy, and secondly augmented high dose therapy.  The latter includes the inclusion of the novel drug called Ixazomib.  In the event my result is to receive conventional high dose therapy (with a drug called Melphalan) immediately followed by stem cell transplant.  Accordingly, on Monday I have a clinic appointment for the installation of a central line called a PICC and then I should be admitted onto the ward for immediate high dose therapy.

It is my hope to that my next post will confirm my admission and then a day-by-day account of my hospital treatment.

As a rule, men worry more about what they can't see

than about what they can.

Julius Caesar

KBO
Stephen

Stem Cell Mobilisation & Collection

Firstly I again had the privilege to take part in the Lord Mayor's Remembrance Parade in Bristol.  The public's attendance was truly extraordinary and the weather was kinder than last year.  Recalling our trip to the battlefields of Belgium earlier this year helped me appreciate that the Great War ended 100 years ago to the day.

In respect of my myeloma, things have certainly moved on.  I've had my pre-assessment appointment.  This involved various tests to confirm my fitness to proceed eventually to high dose therapy. Later this week I will have my lung function check and echocardiogram.  The doctor, satisfied with my health, prescribed me the G-CSF (growth factor) which stimulates the excess development of my stem cells.  These then migrate into my blood stream for collection.  This is known as mobilisation.  Since at my previous treatment 6 years ago, when the mobilisation was not has good as hoped, I was this  time prescribed a very expensive drug called Plerixafor.

My mobilisation thus required that I self-inject G-CSF on four consecutive evenings each at 6pm.  On the fourth evening I was to attend the Bristol Haematology and Oncology Centre (BHOC) to receive the Plerixafor at 10pm.  There was a slight risk that I might be kept in the ward if I reacted.  I wanted to minimise the number of journeys my wife Margaret would need to support me with, so I agreed to stay in a hotel on the fourth night.

The following day I attended the apheresis unit at the BHOC.  Blood was taken from the vein in one arm, filtered for the stem cells, and then returned to me through the other arm.  The process takes about four hours and can make at least one arm very sore.  At the start of the process, blood samples are taken one of which is subject to a test called CD34+ which measures the potential for stem cell harvest.  My result was a disappointing 34.1.  Later that day I was phoned to say that, of the 2 million cells per kilogram of body weight needed for transplant, only 1.84 million had been collected.

Thus, later that evening, I again self-injected G-CSF and travelled to the BHOC to again receive Plerixafor.  I was now costing the NHS a severe amount of money! Margaret insisted that I sleep at home that night so took me to Bristol that evening, returning me the next day and collecting me after a further spell on apheresis.  The result of the second collection was 0.89 million.  I now have sufficient stems cells which have been processed and then stored in liquid nitrogen at the NHS Blood and Transplant centre at Filton.

Ahead of me now are the final two tests to confirm my health; a lung function test, and an echocardiogram.  Assuming everything is OK, I will the be randomised within the Myeloma XII trial and then admitted for high dose therapy and stem cell transplant.  I anticipate that the loading on the ward will be the deciding factor on the date.

I have so many people to thank.  Firstly to Margaret who so cheerfully drove me to the various appointments and made sure that I was as comfortable as possible at home.  Secondly to the transplant coordinator who made sure that I was checked, prescribed, booked into apheresis and that my stems cells were processed in the alloted time.  Thirdly the team in the BHOC apheresis unit were terrific.  They answered all my questions, they kept me updated on what can seem a very long process, made me as comfortable as possible, and ensured that my health was maintained.  "Cheerful and professional".

Given the intensity of the treatment I am now receiving it seem only right to sign off, as I have previously done, with a acronym associated with Winston Churchill. I leave it to you to Google its meaning!

KBO
Stephen

Onwards !

Since my last post, little has happened but there has been a significant change regarding my myeloma treatment.

During cycle 5, which is just ending, I was phoned by my trials nurse and told that the paraprotein count at the end of cycle 4 was still at 6.  It has remained at 6 for 3 cycles thus confirming that I have plateaued.  This being the case, there is no benefit in continuing onto cycle 6.  At today's clinic appointment, my consultant confirmed this situation.  This is excellent news as the side effects were certainly hard going at times.  It is necessary now to check what effect, if any, the 5 cycles have had.  Accordingly later this week I have the renewed pleasure of yet another bone marrow biopsy - oh joy!

Also at the clinic, my belief that I do not have any stem cells in storage was confirmed.  In preparation for stem cell transplant, I will need stem cell harvesting preceded with mobilisation.  Last time it proved difficult to harvest stem cells from me (hence the lack of spares now!) so I will be given an extra medication called Plerixafor.

It is perhaps worth listing what is now ahead:

- Bone Marrow Biopsy (to check for any effect from the 5 re-induction cycles)
- Echo Cardiogram and Lung Function tests (to confirm my health before proceeding)
- Mobilisation (involves self-injection of growth hormone and nurse administered Plerixafor in order to cause stem cells to circulate from the bone marrow and into the blood stream)
- Harvesting (one or more days connected to a machine to recover stems cells from my blood stream)
- Randomisation (to determine which of two paths - either standard transplant or enhanced with the trial drug Ixazomib)
- Final checks of my health then ....
- Installation of a central line (this is a tube into a major vein through which multiple medications can be administered, thus saving injections.  At Bristol it is normal to have a PICC line which has two tubes; one for introduction of medications and one for blood sampling)
- Admission for High Dose Therapy and Stem Cell Transplant (I expect this to happen in early December and last for about two weeks)
- Period of recovery (after discharge my immune system will be somewhat weakened.  Recovery can take several weeks, even months).  It is to be expected that recovery will be over the Christmas period which, this year, will be rather "peaceful" !
- Further randomisation (to determine whether I receive maintenance therapy with Ixazomib - or not)

All this may seem daunting.  Firstly, I've previously had HDT&SCT so I know what is coming.  Secondly I only have to do one thing at a time.  Thirdly and most importantly, it is the best possible treatment I can receive in order to control my myeloma.  I am most grateful that my health and circumstances make it possible.

Stem cell research can revolutionise medicine,

more than anything since antibiotics.

Ron Reagan

Keep well

Stephen