Category — Multiple myeloma

Further to the post below. On Friday afternoon, we received two calls from Lincoln Hospital, one from the Haematology Dept and one from the Renal Care Support Team both informing us, that Hamada’s  last creatinine  blood level has lowered to 423 making his eGFR now about 12. Yes, a slight improvement ! The Urea had also lowered from 18 to 15.3 (which is good).

 

The Haematology Consultant now wishes to see Hamada in six weeks! He is sending a letter to confirm this even though Hamada had accepted it completely  and was  most agreeable  with their advice not to attend any more Clinics.  So God willing maybe, just maybe, once the Revlimid and Aspirin leave his body, the kidneys may improve enough to continue with more MM treatment.

 

I am sure there are many who understand, how hard these changes are to receive from day to day. As a Carer of someone much loved, I go from being saddened to the core of my very being,  trying so hard to keep Hamada cheerful and with at least some hope.  To  being so elated that I spend my days dancing around like some demon mad woman, attached to my  iPod   forgetting to buy Vegetables and buying Lilies instead! It is nobody’s fault and I blame no one, it is as it is.

 

Yet,this rollercoaster of emotions is so very hard to deal with but I do so love being right about this, certainly for the time being at least.

If the Revlimid and aspirin leave the body could it restore the kidneys enough ? !!!

After a worrisome week and Hamada’s well considered decision not to continue with more treatments for the time being, which would now involve dialysis, we are both feeling relieved and peaceful that this huge decision is over. We have had what we believe was the final Haematology consultation today unless a miracle occurs and we have had a few of those before. So with the Doctor and lovely Nurse Tracy present, we discussed all that was needed. It was a bittersweet consultation after all these years and with the last results from the second round of Revlimid, the Paraprotein reading continues to show a drop, this time -4 bringing Hamada’s count to 12 from the recent 21.7 It is a disappointment beyond compare that the failing kidneys which were the first reason to suspect MM may well be the ending point also. Because of the suddenness of this lowering of kidney function, it is hard for me not to relate it to the Revlimid + Aspirin but I know of Revlimids great success worldwide and for some without kidney problems the lowering of the PP in just two courses really shows, that this is the drug of success for many, and it may well have continued to reduce the Myeloma load for Hamada. One point to consider is that we all know that Myeloma leeches calcium from the bones and this alone after all this time, could indeed be the single reason the kidneys are failing again.
Still time will tell and I stand by my lay/woman’s judgement that it is the Revlimid + Aspirin that has compounded the damage. Further creatinine readings may in fact show this, if there is a marked improvement  now these drugs has been removed? 
It is hard to take in the severity of how ill Hamada is when I look at him, there is no outward sign that has suddenly appeared! A tiny puffiness around his eyes but no swelling of the ankles, just a continuous need for sleep and a very tiny amount of energy. He is still eating reasonably well and always his cheerful self, dignified and eager to retain control of this beastly illness.

As he has managed before with a very low kidney function eGFR (7) at one point, survived for these past four and a half years with a eGFR never being more than 17 at the highest point. Is it then, not crazy for me to expect more months? I am aware of course that should the kidney function nosedive once more, then it would be a very short time indeed. Although we have finished all clinics now, unless there is a remarkable change in Kidney function, Hamada’s blood will still be monitored,with the first visit by the out-care renal team. A nurse will be coming here on the 25th of this month. I am now waiting for the last creatinine reading taken yesterday, maybe I am ‘clutching at straws’ but this will in the very least, be most interesting! Keep well all.

A very clever compassionate fellow MM sufferer and such a dear person Paula over at  http://feresaknit.wordpress.com/  sent  a brilliant surprise for Hamada today. I don’t know how to thank her for filling our day with such fun and delight but having my trusty camera at the ready I am able to show below, how happy Hamada was to receive these beautiful ‘works of art’.

After waking from his little nap I sat him by the window to receive his parcel. Just look at the delight on his face! First one little Angel appeared from the box. Wow’s and delighted exclamations followed.

Just look at this happy face as another Angel was revealed. The two little angels were then placed in several spots for perfect viewing and their exquisite beauty with their crystal decoration (which in the above photo unfortunately I have not managed to catch very well)  while we admired and delighted over their perfect beauty!  One holding a little  sparkling heart and the other a  jewelled star!

But their final resting place will be in Hamada’s bedroom of course, there was no way he wanted to be parted from his Angels. So now they have pride of place on his bedroom cabinet where they will twinkle away and keep him company when needed x and all I can say that these two little Angels have brought much joy and hope today and we thank you so very much dear Paula x

A return visit again yesterday to the renal clinic brought more bad news I’m afraid. Hamada’s creatinine level is  now at 530  (eGFR10 ish) and discussion about dialysis did not go well either. As Hamada’s arm veins  are now badly damaged from these years of blood work, he will have to have a line (perm-cath) inserted into the neck for the third time, (two ‘Hickman lines before) to manage dialysis, it cannot be done any other way for him. This also can’t be done at Lincoln Hospital only at Leicester, which is a 150 mile round trip. Hamada would  then stay until Dialysis is established successfully (if it can be?)  then when a slot allows, transferred back to Lincoln or Boston Hospitals for the regular three times per week x four hours routine of dialysis.  The big consideration is, that this routine may take some time to achieve and is not of course without danger or risk of infection or bleeding with low platelets, poor blood etc and then the Doctors say how much extra time would this give him?

Many questions and decisions to think about. The problem that has arisen is that Hamada is saying he does not want to leave his home for this perhaps long stay. Both renal consultants  have not given much hope for achieving this procedure without problems arising at some stage due to Hamada’s fragile state. This leaves Hamada with a dilemma and a big decision about whether this is the time to retire from the fight and let nature takes it’s course or carry on like the warrior he has always been. I believe perhaps, this is a temporary feeling of despondency.  The renal team of course wish to prepare him ready with the line prior to complete kidney failure, which they say is imminent, as it is not wise to be admitted to Leicester as an emergency and not have this surgery which takes 45  minutes and must be done as an elective surgery procedure and ready in place.

This huge immediate lowering in kidney function after four and half years treatment for Multiple Myeloma has come about very suddenly. Hamada regained function from eGFR6 to eGFR17 during  the past four years from diagnosis to this time.  Has only recently gained a small reduction in Para-Protein on the Multiple Myeloma side and certainly appeared to be slightly improved.

There is no doubt in my mind  this sudden reduction in kidney function has been caused by the Revlimid which was started in August this year at a reduced dosage 15mg every other day but it is known to gather in the kidneys and also by the daily use of Aspirin 75mg, which is also known to affect and reduce kidney function – see: Article by Robert P Kimberly  and Paul H Ploz on Aspirin-“Induced Depression Of Renal Function” in The New England Journal of Medicine. Aspirin  was given to avoid DVT while on Rev.

This will be a most difficult week trying to persuaded Hamada that fighting on will be worthwhile even though the consultants do not believe it will give him much extra time, then of course it is not my decision to make and I will always respect his wishes – we shall see what this week brings. If Hamada decides against dialysis then all further treatment will stop, we will then return to care under our local Doctor and palliative care will start here at home.

All did sparkle that special night

jewelled eyes and delicious delights,

hand painted candles on ‘twinkling’ tables

we laughed in fun and conversation.

Gathered together from near and far

in atmospheric fun filled bar,

shining ladies and handsome men

music, gaiety and many friends.

Cakes that glittered with golden stars

sprinkled gently in ‘fairy dust’

ribbons that twirled in whirls and whirls

something special for all of us.

We danced a little way from you

but you caught my eye in rendezvous,

you smiled that smile as you always do,

I drunk in the delights in coloured hues

but really …all I saw was you….

All Rights Reserved

Cup Cake Photos  by Susie

As Hamada approaches three years since his Stem Cell Transplant which undoubtedly saved his life, we are eternally grateful for the extra years he has obtained from this procedure. So many of us debate about which way treatment for Multiple Myeloma should evolve. What drugs to start as front line treatment? what choices of drugs to continue with, in an effort to help and support. Even with the risks that most carry, for the many problems that for nearly all MM patients, do arrive at some time or another.

Should it be the smallest amount possible? Should you be trying to support and protect with many of these not always proven drugs as Hamada has done and continues to do, or should you go it alone?

Then what about the problems that many of these drugs can bring to someone who is now so vulnerable. What is the right course of action to take? Don’t we all ask this question at the beginning of treatment. It seems there is such a fine line to balance the needs of these drugs and the damage that some may do. It is indeed a complex issue and one which must be constantly monitored by the specialists and also through the watchful eyes of the caregiver. How important to note these sometimes subtle changes in a patient, to try to assist your consultant with good clear voicing and so one day all knowledge gained, will go forward to finding a cure for this most complex and difficult of diseases.

Ideas have changed even in the four+years that we have been on this journey. We have listened and read of new transplant procedures coming to the fore in parts of America, where they are now very hopeful and talk of a cure. Still, looking back on the past four years of treatment for Hamada, there was really no choice but to proceed to SCT as quickly as possible. His kidneys were failing, he had succumbed to two bouts of pneumonia, one so severe that his body was shutting down and we knew this was really his only chance to gain extra time. Hamada’s spine was already damaged and he was in agonising pain which thank goodness was helped with radiation. As soon as he recovered from this, he fought hard to reduced the Para Protein as quickly as possible and to get to start his ‘new life’.

I have read so much about MM over this past four years and four months, learning as much as any lay person can grasp from many different areas and from the voices of many other sufferers worldwide. I have been grateful for all the knowledge gained from good “list serves” such as ACOR and from fellow sufferers of MM and carers alike.Their blogs have given me a good insight into how MM affects/unfolds in so many very different ways for each patient. For sure, no one with MM is the same, treatments will be different for all. Some do better than others as one type of chemotherapy seems to work for one person but not for another. Many appear to remain in remission or continue with very low PP for many years. How different we all are.

I am a poet not a medical person, so it has been the biggest learning curve of my life. Still my thoughts right at the beginning of this journey and also now, were that if I could record and write just the way our personal journey unfolded, using my words in the form I know of poetry. Just telling of my feelings of these past years may help other carers to know of the fears, sadness, the coming to terms with, and all that a Carer feels, that invade thoughts daily in an effort to try to help loved ones. Perhaps this blog may help others who are just starting their journey along the same path, for others it will not, unique as we all are.

For carers who read my simple poems will know, that each tells a story of that particular time in this journey, just as the changing seasons tell us what is happening daily. To convey my feelings in this fashion, also helps me to remember, just how I felt at the dates show on each poem.

Perhaps for some this is a strange form to write a diary of events, but MM is a complex illness as we all are and it is perfect for me, thus enabling me to remember every minute of it all and to free the emotions that often fill this time.

Hamada is continuing well I feel with Revlimid, now on his second course, not having any side effects that he cannot manage. Of course he is more than weary, managing his maintenance drugs daily and the dreaded 40mg of Dex weekly along with Revlimid, always grateful for these past extra three years, which many times prior to the SCT we never thought would be possible. I am aware of course that this is not always the way to proceed and for some if they are otherwise well and not with compromised kidneys or bone lesions, will not choose SCT until all other avenues have been exhausted.

There is no right or wrong way that I can see, only that each person should be treated in their own unique way, as symptoms present themselves and by good valuation of bloods and careful monitoring of precious bones, not from some ‘set out’ protocol. Still what do I really know? only that dear Hamada is still alive after a very poor prognosis and doing dare I say ‘fairly well’. 

Stay well all who read this post and continue to make good choices as I continue to record this journey in ‘poems of love’

All Rights Reserved Sept 2010

As Summer fades and the air is filled with signs of Autumn.

As the leaves start their change in colour and their sprinkling fall;

the rhythm and flow of life continues its clever path.

This in-between state that suspends betwixt the seasons is all my heart desires.

To call on the Gods to allow a stay with compassion,

cleverly keeping this season of harvest and life.

Protect and preserve these mere moments of joy and utter no anguished change for me,

as grateful diamonds of joy, spill from my heart.

Take these vibrant days of colour with their smiles intact, allow for NO fear,

for you have always been my brave one but you are more so now.

Do not snap and break this plan I ask,

keeping this Autumn complete and in my whispered prayers.

All Rights Reserved @ 2010

Photo from Susie Hemingway’s Collection.

Just to let you know that Hamada has completed his first week on Revlimid and so far so good. Back ache which he is coping with but no feelings of sickness or other worrying symptoms so far. Hamada is of course very weary but managing to eat well. First early blood tests are back but we won’t get  the para protein/M-Spike yet. That I presume will be at the end of the first months course. Although sleeping most of the day which is pretty usual, there is a significant improvement in some of the blood readings  Haemoglobin is up a tad and there is a substantial rise in the neutrophills due I believe to the injections of filgrastim three times per week.

July Blood Counts. HB10.06 – Platelets 63 -WC.1.7 NEU –1.04

Aug Blood Counts. HB11.1 – Platelets-71 –WC1.8 – NEU –7.1 !!

Para protein  last reading 21.1  (which for those who don’t understand this very important reading is the number we are fighting to reduce)

We continue to go for weekly blood tests and then ring later in the day to confirm we can continue with this Chemotherapy regime. A real balancing act watching the condition of Hamada’s blood at every stage. Thank you Doctor C and Sister Tracy for this great attention to detail.

On the eve of  Hamada starting more Chemotherapy,I felt it appropriate as we finish our lovely Summer without treatment, to  post once again this short verse  first written in 2008.

My Clock.

How peaceful in this pavilion
as the pendulum is free to swing,
I wish to guard these regulated movements
as you oscillate in free time.
I wish to savour your liberty of actions
your power of self-determination.
I need to imprison and restrain this time,
to mend this clock of mine.

All Rights Reserved – June 2008

This week we learnt that our friend and Hamada’s fellow warrior, travelling the same MM road has passed away. He was a lovely gentleman whom we  had come to know during the trips to Lincoln County and more so during the recent  rounds of Velcade Chemotherapy (both having the same regimes).  This gentleman was the subject of my poem  “The Man With The White Knitted Hat” which is shown below in a recent post. It has saddened as both very much and we  send our heartfelt condolences to his  dear wife.  God Speed  Keith, your journey with MM was all too short.

As soft as the evening breeze

that trembles through the tallest trees

as meditative as your words allow,

entwined and tangled in these Summer days.

The crystal clarity in your eyes

tells more in a dear face of courage,

than the gentleness of your silence.

Not so much now a belligerent waging war

nor a stricken fight,

just a gentle silence that goes on into the night.

Words are difficult for you to find

It does not matter  for I don’t mind,

the gentleness of your silence is far more

than feckless words that blow in the Summer wind.

The brushstrokes of our life unfold clearly

as you focus daily to capture strength,

this Summer of endless joys

nothing more is needed,

no more

than the gentleness of your silence…

All Rights Reserved 2010

Music by Jo Moursi  is available to download, all proceeds going to research into  Myeloma UK.  Support a good cause and download,  let’s have some feedback too.

“My Heart Grew”- Single by Jo Moursi download from: http://itunes.apple.com/us/album/my-heart-grew-single/id379506283

“A  beautifully haunting  romantic ballad, written, played and sung by Jo Moursi”!

All Rights Reserved. July 2010

We swing together you and I

in that old shaded place we love,

peaceful sweet smelling garden air

that gentle breeze that tickles hair,

the yellow Iris in our view,

Oh how I love to be with you!

Tranquil sounds of garden spirits

the chirping of the evensong thrush

lavender blue scent comes through,

we swing together like children do.

This quiet spot where we can dream

these special hours away,

amid the slowing of day ending

we talk of yesterday,

no more is needed for you and I

we know that time is short

and so we talk and dream and think

of what this life has brought.

We dream together

                                              you and I,

                                                                     on this old garden swing.

Photo: from “Hemingway”

All Rights Reserved.

It was an eternal wait that day

a long perpetual tedious episode

an abuse on the senses,

the faces filling the clinic suite

sitting too close together at tables that encumbered,

all appearing the same, all resigned to their fate;

all stricken with disbelief.

I watched…

Can you put aside like dead flowers a mind that is full of fear?

Can you not feel the pain of those set faces that await

the ‘clarion call’ for  news no one wishes to hear?

Can you relentlessly show that crumbling smile?

Can you quieten the beating of your own heart?

I watched the woman sitting opposite me, a reflection of myself,

sitting beside her Man, worry etching her face,

quietly waiting the prophecy that could change their lives,

was she to receive news that would set her Man free?

Set them both free!

I watched…I watched…

I watched this fragile life snap and break,

I  watched those tears at another table…

All Rights Reserved  @ Susie Hemingway 2010

* NB After being on  Chemotherapy – Velcade  + Dexamethasone (80mg weekly) since February 22 2010 Hamada’s Para-Protein (M-Spike) has only dropped to 15  He is to have a little break and then start Revlimid.