DARA Cycle 4

The very next day after I had written my previous post, I received a further CT scan, this time at Weston-super-Mare Hospital.  The result was then interpreted by the consultant team at the BHOC who were satisfied that no further radiotherapy was required.  They thus arranged for me to continue treatment with Cycle 4.  This was to be with "platelet support".  Accordingly the following week I first had an appointment to be transfused with platelets.  The same morning I then received the medications required by the DARA protocol being Daratumumab, Velcade and Dexamethazone.  

Receiving Velcade is noteworthy.  Over 2 years ago I received my second High Dose Therapy and Stem cell Transplant.  One of the outcomes was a lowering of my platelet count.  Platelets are required by the body to respond to any bleeding whether external or internal.  Accordingly my count has been monitored very carefully.  Unfortunately the drug Velcade can further reduce platelet count.  The consultants have thus reduced the amount of Velcade I receive.  This has been insufficient so I've now needed to be given platelets.  Its ironic since I was once a platelet donor!

A week later I again attended for platelets and chemotherapy.  Meanwhile I have now been given access to a Community Nurse Specialist whose role (certainly initially) is to help me with pain control.  She advised me to start a "pain diary" in which I record the relationship between pain medications, activities and my assessment of pain.  She also agreed that my practice of taking oramorph with paracetamol was appropriate.  She then arranged for me to receive a reliable supply.  Little by little I seem to be getting pain under control - thankfully.

My quote this time is:

No pain, no sandwich
(I trust you speak sufficient French to understand this!)

Keep safe, keep well and KBO

Stephen

November Review

I was phoned today by my consultant.  The news was much as expected and not especially good.  Despite having a week off treatment, my platelet count remains stubbornly too low to continue into Cycle 4 treatment.  In addition my haemoglobin count is now giving rise for concern.  He discussed the possibility, once my blood levels have been improved to the level required, I might be recruited into a further trial.  This is most positive although not without some risks.  Looking for good news, my liver and kidney and calcium results remain very good.

Meanwhile I am to have yet another CT scan tomorrow to see what is causing my back pain and whether the myeloma has spread perhaps into my ribs.

Keep safe, keep well and KBO

Stephen

DARA Cycle 3

Cycle number 2 ended almost a week ago.  I'd had my Linac radiotherapy earlier but it became clear that it had not improved my back ache.  In fact the pain was worsening.  I reported this to my consultant and two processes were immediately put in place.  Firstly that I would receive a further dose of radiotherapy lower down my spine.  Secondly, since pain relief with paracetamol was insufficient, I would be prescribed Oral Morphine.  This was quickly delivered to me.  Much to my surprise, when taken, it seemed not to work.  I became aware that I could take it at the same time as paracetamol.  The two medications then seemingly work together.  Thankfully this proved to be the case.  Paracetamol normally only provides relief for 4 to 5 hours but the combination I've found to last maybe 6 or 7 hours.  Accordingly I get pain relief throughout the day and the night.

I've now had the second session of radiotherapy and wait to see if it has been effective.  If so I will be able to reduce the morphine dose and possibly even stop needing it.

The perhaps not-so-good news came from my consultant who advised that my paraprotein level did not suggest significant response to treatment and that alternatives may have to be considered.  Maybe, just maybe, the radiotherapy will have targeted the actual myeloma and not just the pain.

Keep safe, keep well, and KBO

Stephen

LINAC

Last week I was again invited back to the Radiotherapy Department at the BHOC to have scans in preparation for radiotherapy.  I was marked up with ink on each side of my chest and a very small tattoo on over my breastbone.  Then, yesterday afternoon, I returned to have the actual therapy.  This was undertaken on a device called a Linear Accelerator on 'Linac'.  

I simply had to lie on a (rather hard) surface.  

This image shows the actual Linac at the BHOC.

I had two treatments; firstly on part of my spine which has been giving me pain.  This involved the radiation source being positioned beneath me.  The second was to my breastbone requiring treatment from directly above.  I can now expect to see my skin react with something akin to sunburn and which may become a little inflamed.

I am extraordinarily fortunate that I am treated at the BHOC and that I have access to such advanced facilities.  Everyone I meet at the BHOC is so kind and friendly despite their often very difficult work.

Keep safe, keep well, and KBO

Stephen

DARA Cycle 2

Since my last post, life has continued to be somewhat complicated. Following my MRI scan, I had a routine blood test and the following day a telephoned consultation.  My platelet count had deteriorated yet again and was too low to proceed to Cycle 2.  There would be a pause for a week and then another blood test and review.  Meanwhile I was called forward by my GP to receive the annual influenza vaccination. 

A week later, I was asked to attend the radiotherapy department for a further scan required by them to proceed with radiotherapy treatment. In the event there were administrative difficulties so that could not proceed.  Fortunately that appointment was followed by another blood test.  Then the day after, I had a further consultant's telephone call.  My platelets were still low but the decision had been made to continue onto Cycle 2 but with notable conditions.  Firstly, each treatment would be conditional on a check of my platelet level.  If too low, I will have a platelet transfusion.  Strange that some years ago I used to be a platelet donor. Because of the potential need for platelets, the treatment appointments will be back at the BHOC where the necessary facilities for fast track testing are available.  Secondly the dose level and frequency of one of the chemo drugs, Velcade, is to be adjusted.  Clearly there is now a dilemma. I responded well to the first cycle so there is a clear benefit in continuing with treatment.  On the other hand, that treatment is having adverse effects on my platelet level.  It will be a balancing act.

On the day before that blood test, I had visited Woodspring Bay with the intention of flying my drone.  In the event, and having launched, it was clear that the wind was too strong.  This was a shame since the tide was at its lowest.  I'll leave you to study the fact that tides ebb and flow twice every day but also are subject to springs and neaps twice each month. 

On the day of the blood test I had returned to my car at a time which offered the opportunity to return to the bay for another attempt.  The conditions were almost perfect.  Although the tide was just a little higher than on the previous day the wind had now abated.  I was able to launch and film two hulks which were scuttled in 1944.  I will be publishing another YouTube video in due course.  

This image shows HMS Staghound which was scuttled on the Langford Grounds (in Woodspring Bay) in 1944.

Evident is at least one bomb crater in the mud.  Also apparent is the ship's single boiler (large cylindrical object)

Click the image to enlarge.

The two most powerful warriors are patience and time
Leo Tolstoy

Keep safe, keep well, and KBO

Stephen

Two Days Off

It's the weekend and I have 'two days off '.   I started cycle number 1 on 31st August and it lasted for three weeks.  I had quite a few side effects including, for some unexplained reason, almost loosing my voice.  Now anyone that knows me will appreciate, I can normally talk for England! Thankfully it has now returned.  The 'two days off' refers to the fact that each week I've needed three appointments, each requiring a trip into Bristol.  Nobody had told me that you need to be fit to be ill !

In order to continue onto cycle number 2, my overall health needed review including yet another blood test.  Unfortunately my platelet count which has been somewhat suppressed for two years, was now very low and is delaying my treatment.  It is to be hoped that things will have improved in time for my next blood test on Monday followed by telephone clinic on Tuesday.

Meanwhile my consultant had been concerned about my bone health and arranged for me to have a CT scan on 2nd September (another trip into Bristol).

MRI Scanner - Click to enlarge

Because I currently have some back/pelvis pain, it was then decided that I should have a further scan, this time an MRI on Friday
(yep, another trip into Bristol).

It seems highly likely that I shall need some radiotherapy (so yet at least one more trip into Bristol).







The procedure involves donning hospital gowns (one front, one back) and the lying onto the bed which then moves deep into the scanner.  I was provided with a squeeze bulb to summon attention had I required.  I was also to wear headphones since the scanner is extremely noisy.  I can understand why some people cannot cope with being in the scanner, with one's nose just 2 inches from the machine for an extended time.  I was scanned from the base of my skull to the base of my pelvis taking about half an hour.  The staff were so cheerful, friendly and efficient.

As the number of Covid infections in the UK continue to rise, I hear on the news that shielding might be re-introduced.  I find it frustrating that the irresponsibility of some could have such a detrimental effect on others. There - said it. 

The most important news I received from my consultant is that my paraprotein, an indicator of my myeloma activity, has significantly reduced.  Excellent news: I am responding to this treatment.

Optimism is the faith that leads to achievement. 

Nothing can be done without faith and confidence

Helen Keller

Keep safe, keep well

Stephen

DARA Cycle 1

As the summary above and the title of this post indicate, I have been successfully recruited onto a new line of treatment involving a novel drug call Daratumumab (typically referred to as DARA.  Its brand name is Darzalex).  

On Tuesday I had a blood test followed with a face to face meeting with my consultant.  She confirmed that I was suitable for this treatment and proceeded to set up the necessary prescriptions for the first, three week, cycle.  

Those good people at Myeloma UK kindly sent me a face mask - quite the part!

On Friday I attended the treatment centre which had temporarily been established in a building called Chapter House.  This is normally used for the training of dentists but Covid-19 had suspended that activity and the facility allowed better patient separation for Haematology and Oncology treatments. I had the 'pleasure' of reclining in a dentist chair for 8 1/2 hours !  A truly amazing facility never-the-less with multiple bays each set out as a dentist's clinic. I believe that there were around 60 such bays- very impressive.  

I have a couple of appointments booked at the BHOC and from then on at The South Bristol Community Hospital which should be an easier journey from home.  I have received appointment details up to and until 14th December.  Somehow with all the disruption due to Covid-19, the BHOC has continued its patient care - very efficient.

In an previous post I mention the installation of a feeder specifically for our squirrel(s).

This is believed to be our male called Cyrill who has now found the feeder and visits regularly. 

The foil acted as an indicator that he had been.

One of my RAF annual assessments included the belief that I feared the unknown.  Reading all the literature I could in advance of my new treatment certainly left me apprehensive. 

Apprehension, uncertainty, waiting, expectation, fear of surprise,
do a patient more harm than any exertion
Florence Nightingale

I'm pleased to report that despite all the concerns I had, they were unfounded. So far so very good.

Keep safe, keep well

Stephen

Update 2nd August

Early this week I had a phone call from my nurse specialist who now had my paraprotein result.  It was rather higher than anticipated and represented an increase in the rate of change.  We discussed my options and preferences for future treatment which she agreed to discuss at the Multi-disciplinary Team meeting.  After the meeting she again phoned me to say that although final decisions needed to be made, my preferences had been agreed to.  Very positively, she would be booking outpatient treatment appointments.  She would also be arranging a face meeting mid August at which I will sign the necessary consents.

Although this has not been the best news, it is by no means unexpected.

Keep safe, keep well

Stephen

Review 21st July

Last week I again travelled to Bristol to provide blood samples and then this week I was phoned by my haematology consultant. The test results showed an improvement in both my hemoglobin and my platelets.  My paraprotein count had not yet come back from the laboratory.  This latter feature will indicate how my myeloma is progressing.  Never-the-less my consultant was content to wait a further 6 weeks before any decisions about treatment are made.  This suits me, as by then the clinical trials that had been suspended due to Covid19 will have resumed.

In my last post, dated 26th June, you will see that I had been preparing to take on a Samarathon - a total of 26.2 miles walking and flying my drone.

I was keen to get started so on the 1st July I walked on Brean Down - getting well and truly rained on!  I then had to wait for better weather before walking Weston-super-Mare's beach on the 8th.  I decided that I needed to complete the challenge as soon as possible so walked the remaining stages on the 10th/11th/12th/ and 13th.  Each stage was walked at or soon after dawn so that there were few people about and thus more chance to fly the drone in accordance with regulations.  Although getting out of bed so early was an effort, the experience of walking as the sun came up, and nature was so active, was so refreshing.  I have collected almost £600 and I am so grateful to those who sponsored me.

The easiest way to see the videos I produced is to open YouTube and then search for my channel name - PEMPILOT.

One of my walks was along Sand Bay and onto Sand Point.  Sadly the video I took from the drone was faulty.  In addition my research has also drawn my interest to St Thomas' Head which is a former MOD site.  I have in mind to explore that area now!

Click to enlarge

In my May post I told you about our two squirrels Cyril and Cybil.  Cyril, in particular, robs nuts from the bird feeder.  The only solution has been to install a squirrel-friendly feeder just for them.  Only put up today we must now see if the nuts on the outside will be sufficient to attract attention.

Look deep in nature, and the you will understand everything better

Albert Einstein

Keep safe, keep well

Stephen

Samarathon

Despite my myeloma and the fact that I've been in Shielding, I've decided to take on Samarathon 2020.  This requires that I complete the marathon distance of 26.2 miles within the month of July.

This can be running, jogging or walking whenever and wherever liked.  I have decided to do mine over six stages along the North Somerset coastline.

Click to enlarge

I've published my sponsor page at: https://samarathon2020.everydayhero.com/uk/stephen-1   and will be providing a series of updates as I progress on my YouTube channel.

Unusually these will provide images taken from my drone

Challenges are what make life interesting;

overcoming them are what makes life meaningful

Joshua J Marine

Keep safe, keep well

Stephen

Review 26th May

It's been two months since my last consultant's review.  Since then Margaret and I have maintained our shielding which is not due to end until 12th June (after 12 weeks).

On Thursday I drove back to the Bristol Oncology and Haematology Centre (BHOC) in order to have my blood tested.  Again I shunned public transport and put my car into the nearby multi-storey.  Interestingly perhaps, I had prepared my car in advance by inflating the tyres and ensuring the battery was fully charged.  I also washed it - yuk - I realised it had not been fully cleaned since February and algae had started to develop!  Again I managed to not touch anything except the parking ticket.  I had taken hand sanitizer so that was no issue.  Margaret had made me a face covering so that I could avoid infecting the staff.

Today I was phoned by my consultant.  Again my paraprotein had risen - this time up to 18. It was rewarding to hear that there were no negative effects on my liver or kidney functions and that my other blood results were satisfactory - so good that my next appointment will be in another two months. It is now clear that this period in my myeloma has happened at a very good time in respect of covid-19.

I learnt that recruitment to myeloma clinical trials is currently suspended but that may change "shortly" .  I also got the very good news that one of the medications that I will almost certainly need in the future called Velcade can now be self-administered.  Originally it had been infused by intravenous injection and had a bad reputation for side effects.  It was then developed to be given, also by nurses, as a subcutaneous injection (under the skin).  It was found to have far less side effects whilst still being a very effective medication.  Only now has Bristol agreed that it can be self-administered and thus avoiding multiple visits to the BHOC.  Not only are such jouneys taxing, they also risk infection.  The future is very much better with this news.

Click to enlarge

The picture shows a new visitor to our garden who I've called Cyril.  Here he is reaching up to nuts I've threaded onto a string in a hope to discourage him from stealing from the bird feeder.

The intention is to build him, and his mate (called Cybill) an assault course.  First we need to attract him regularly and we have some way to go !

"Those who wish to sing, always find a song"

Swedish proverb

Keep kind, keep safe, keep well

Stephen

Review 31st March

Since my last post, the emergence of COVID-19 has affected us all.  I've received a letter confirming that I am in the high risk category meaning that I must take particular care to avoid infection.

Today I was due my routine consultant's appointment.  I should explain that this normally would involve entering a small waiting room, then giving blood samples before returning to the waiting room prior to being seen by a doctor.  Instead I was phoned by the Bristol Haematology and Oncology Centre (BHOC) to advise me of changes.  I was to attend the BHOC yesterday for blood test and I would be phoned today by a doctor.  Yesterday I had the surreal experience of driving into Bristol.  My route took me past Bristol airport.  Even with the limited view from the road, the large number of parked easyJet and TUI aircraft were apparent.  Remarkably and despite the lack of traffic, several drivers felt the need to speed.  Having parked in a multi-storey carpark I then needed to avoid touching anything.  Fortunately I had hand gel with me.

Click to enlarge

Ever resourceful, the BHOC had established a temporary building in which blood samples could be taken and then sent to the laboratory.  Everyone entering was checked for temperature and any virus symptoms - very thorough.  This new facility, staffed by efficient and cheerful staff worked perfectly.

Today I took a call from a BHOC doctor who confirmed that my blood tests results were fine.  They had even measured my paraprotein level which has now risen to 13.  The bone marrow biopsy I had last month revealed nothing of concern.  Accordingly I will probably not have another appointment for about two months.

The holiday that we had planned for the end of May will not now take place.  We can only wait for the cruise company, Fred Olsen, to notify us and offer "options".

If you want others to be happy, practice compassion

If you want to be happy, practice compassion

Dalai Lama

Keep kind, keep safe, keep well
Stephen

Relapse

Although the title suggests bad news, not all is - far from it.  I saw my consultant yesterday and yes, the fact that my paraprotein had continued to rise (9 in January) meant that I have been withdrawn from the Myeloma XII clinical trial.  The best news, however, is that I have been given full permission to go on holiday in May.  In the meantime I am on "wait and see". It is to be hoped that my platelet count, which is below normal and probably due to the effect of the trial drug Ixazomib, will start to improve.

Because I was being withdrawn from the trial I was asked to complete a "quality of life" survey, I was subject to additional blood tests, and treated to yet another bone marrow biopsy.  The biopsy is, I think, my eighth !  This one only involved "aspiration" and was without any significant discomfort thanks to the efforts of the doctor and the practice nurse.

You will recall that, last month I recorded my disappointment that the manufacturers of Altoids mints had withdrawn sales in the UK.

Click to enlarge

This morning, much to my surprise, I received a parcel.  Looking at the multiple labels it became clear that it had originated in the USA.  On opening it I found six tins of Altoids !

It would seem that UK customs have checked the contents as the outer polythene wrapper had been opened.

Speaking to our elder son at the weekend, he had asked if I'd received any parcel recently - no I hadn't.  "OK" he said.  All was now obvious: Having read last month's blog, he had ordered the mints from the USA to be delivered direct to me.  In a phone call this morning I was able to say a very big thank you.

It is not flesh and blood but the heart which makes us fathers and sons.

Johann Schiller

Keep well
Stephen

Maintenance #9

Again I have attended my consultant's clinic and have been prescribed for maintenance cycle number nine.  My platelet count remains stubbornly low, although fortunately above the minimum acceptable for the clinical trial I am on.  I think I conclude that this results from taking the trial drug Ixazomib. 

The other notable observation is that my paraprotein count has risen to 8.  This is still very low for a myeloma patient but the fact that it is slowly rising might suggest that the trial treatment is no longer working.  The other measure, my "free light chains" are very good. When asked, my consultant says that I am in Partial Remission.

It is with some sadness that I mourn the loss of Altoids mints.

Click to enlarge

I have enjoyed these "Curiously Strong Mints" since I was a child.  The Altoids brand was created in the 1780s by Smith and Company.  This later became part of the Callard & Bowser empire in the 19th century.

The mints were once produced in Bridgend in Wales.  More recently production came under the control of Mars Wrigley in their factory in Chattanooga in Tennessee USA.

The mints remain available in the USA but no longer in the UK

It takes 20 years to build a reputation and five minutes to ruin it.  

If you think about that, you'll do things differently.

Warren Buffett

Shame on you Mars Wrigley for having no sense of history and for ignoring the wishes of your UK customers.


Keep well
Stephen