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

Chemo Days

It occurs to me that whilst my usual posts explain my day-to-day-life, they don't give many details of my experiences regarding the various medications that constitute my current treatment - my "chemos".

I'm currently prescribed three drugs for this phase, called re-induction, of the Myeloma XII trial;
The trial is all about Ixazomib.  This I take on days 1, 8 and 15.  This cycle started without stock so day 1 was missed.  I now have stock so will take today and day 15.  I'm not aware that I have any side effects from Ixazomib.

The next drug, perhaps surprisingly, is Thalidomide which I take every day.  This caused terrible birth defects during the 1950s and 60s.  It is now recognised as having anti-cancer properties. One of the side effects is to cause tiredness which I do experience and one information leaflet recommends avoiding alcohol because of this.  Since I started the trial, over 4 months ago, I have abstained from alcohol.  When this is over I will do my best to catch up !  In the meantime I certainly often feel very tired and lethargic.

The third drug is dexamethazone.  This is a steroid which I take on days 1, 8, 15 and 22.  The trial requires that I take 40mg each time but it is supplied as 2mg tablets.  Yes, on each of these four days I take 20 small tablets which taste very bitter.

20 Dexamethasone Tablets

The certain side effect of dexamethasone is insomnia.  Pretty well without exception, having taken it I will not sleep much that night, despite feeling tired due to Thalidomide.  That means that Thursdays are pretty much a right-off.

Fridays, Saturdays and sometimes Sundays are characterised by constipation.  I can't be sure which of the drugs causes this but probably the dexamethasone or it may be the combination.  The effect is quite severe and whilst it is on-going I feel generally unwell and light-headed.  As if these various side effects are quite enough, I also experience tinnitus which sounds like a high-pitched hiss of varying amplitude.

To summarise then Thursdays - Tired having not slept. Fridays, Saturdays, and some Sundays constipated and generally unwell. Mondays, Tuesdays and Wednesdays somewhat tired and light-headed but my best days.

I'm currently on cycle 5 and must endure these effects to the end of cycle 6 towards the end of November.  My consultant prescribes various other drugs to minimise the side effects.  It does seem that the effects are getting more significant - perhaps cumulative?

I see this as an investment and I do my best to swim through the treacle.  It is to be hoped that, when re-induction is completed, I will feel my usual self again and ready for the next stage of treatment - stem cell mobilization and harvest.

Keep well

Stephen