[DaiCroParticipant]

Hi All, been knocked about a bit recently but all-in-all I believe I am potential far better off than I thought possible a few short weeks ago.:-)

I announced my small speech at my 4th of August 'Garden Party' as 'Dai's Farewell', a farewell to those that lived afar and a family gathering as such as this before me. I knew that I would see quite a few of them again, a third of them quite regularly… but not all together and quite a few more than likely never again. Such is life… and imminent death.:-|

As for the 'imminent death' bit… a few weeks into my latest treatment 'Velcade', we switched from twice a week infusions, followed by a 'rest' week, making for a three week 'Cycle' to a once weekly infusion, for four weeks… making for a five 'Cycle, adding two weeks to each cycle and therefore extending the treatment and therefore my lifespan. But the consequent 'Bloods Readings' made for a sobering experience. My disease is measured by my 'Free Light Chains', the lower the better. My first two cycles under the 'twice a week cycles' saw a wonderful drop from 1080 to 39… my lowest reading for three years! But the next two cycles under the 'once a week cycles' saw my light chains rise to 280… so there was no option but to revert to the once-a-week regime. 🙁

Alas we were too late to stop the rise and by the end of Cycle six the rise continued to 750… we were in a dilemma, or rather I was because it was my decision and mine alone (I was granted the freedom to choose the once-a-week infusion option by my consultant). Perhaps if we had stuck to the 'once a week infusion' option from the beginning… But 'Look Forward' and 'Whatever It Takes' have been my motto and my mantra from the outset alongside David's wonderful 'Vasbyte – Bite Hard' and I'll stick with them to the outset, whenever that may be.;-)

And due to some wonderful recent news the 'imminent death' may have to wait a little. My consultant had raised a point at a consult in late September that a new drug, 'Pomalyst' recently licensed by the American 'F&D Agency' this last January, was being considered for trials (God only knows why the European equivalent of America's F&D Agency. cannot accept the findings of their cousin's research and acceptance of the drug)… I could be quite cynical and say its the 'jobs for the boys syndrome' but holding out for its own testing and getting the funding are two different things… but miracles possibly do never cease. I received a phone call from the lead nurse for MM matters, who informed me that against all odds the funding body for Europe had granted funding for 'Pomalyst'… better news, the City Hospital, Nottingham (my hospital) has been designated as a trial centre… and best of all… I am number one contender for the trial at Nottingham. The news was that good that the next day I was admitted to that very same hospital.:-/

I spent four days/three nights inside and while they never found the reason for the high temperature that had me admitted (they never do) they did find that my blood sugars showed four consecutive high readings… 22-23-24-22 which made them start me on a diabetes drug, small dose and they told me that they will write to my GP/MD to take up the monitoring of my blood sugars… I came home on Sunday 6th of October, spoke to my GP the next day and he said that he will wait for the letter from the hospital but in the meantime he would get started on the home monitoring… it must be a slow start.:-D

But best until last… my consultant confirmed this last Monday, 14th October, that I am now an official trialist for 'Pomalyst'. I celebrated by coming down with a cold! 😛

My consultant has called me back in two weeks to allow for the hospital pharmacy to establish controls etc, all being well I will then sign lots of forms and come home with a bucket-load of tablets (Pomalyst and the ubiquitous Dexamethasone Steroids). The tablet form means no more twice weekly visits to the hospital… apart from some visits for bloods to monitor any major or minor changes over the first few weeks.8-)

That's my 'catch up' complete with background – thanks for reading. 🙂

Regards and best of all possible health

Dai.

[CarolsymonsParticipant]

What fabulous news Dai…it will definitely be onwards and upwards from here on.

I have just collected a blood test printout showing my pesky lambda light chains rising too (from 128 to 151) and am in cycle 6 of CDT, so fear that instead of marching on to SCT as I had hoped at the end of cycle 6, I may be given more cycles of CDT….so disappointed! I HATE these drugs!

Carol

[jmsmythParticipant]

Dai I was wondering why you were so quiet – missed you. Now I know the reason you are forgiven 😛 . I wish you well on this drug and hope you get fantastic results. Take care
Love Jean x

[meganjaneParticipant]

Hi Dai,

I am sorry to read about your recent stay in hospital (it is strange how high temperatures never seem to have a specific cause) but I am glad to hear your news about Pomalyst. Hopefully the Pomalyst will be kind to you with regards to side effects and it is wonderful news that it can be taken at home 🙂

Megan

[dickbParticipant]

really good news, lets hope it continues.

[DaiCroParticipant]

Thank you one and all,

I went into West Bridgford yesterday lunch time for an eye test and I felt quite good. After several days of fighting rising temperatures my temperature stayed quite stable… until 10pm last night when it started to drop and then I had to fight it from dropping too far… 36.5 for quite a while and 36,7 as the average. I finally dropped off at 6.30a.m. waking again6 at 9p.m. for meds and breakfast. I finally managed to get to 36.2 at 11a.m. and dozed for a couple of hours… if its not one thing its another. I realise that there must underlying causes for these swings and I have come to the conclusion that there maybe more than one at work.;-)

I have been carrying this upper respiratory tract cold for a week… I believe it is easing off and I do not believe that it has dropped into my chest… but I know that it is hard to be certain.:-/

My high sugar levels should be checked on a daily basis but I have not heard from my GP, who was taking it in hand for over a week now… time to chase him up because while I am taking tablet form medication I have no idea of my sugar levels whatsoever.:-(

I am still waiting to start my Pomalyst and in the meantime I am on Dex for 4 days per week, Tuesday to Friday inclusive. I have never taken Dex as a solo drug before but I will be building up my tolerance because it will be the companion to Pomalyst throughout its course.:-)

The temperature rise could easily be the sharp rise in my sugar levels:
The cold I believe to be the luck of the draw:
The solo Dexamethasone could be the underlying cause of the temperature drop::-)

Pure conjecture I know but I would not be surprised if I was right. I just wish that my GP would get his act together… he is usually right on the ball, so I am finding it hard to accept his lagging behind when I obviously need some urgent help.:-P

Appointment at the end of surgery tomorrow I think.8-)

Dai.

[tomParticipant]

Hi Dai

Well am sure you can chase your Dr up sharpish 😉 as am sure you know he cant afford to sit on it, well worth the chase.
Its strange your temp up and down like a ho ho I suffer (but not as often as you) a High temp every now and then for no apparent reason but it has dropped by the time i have had a nites sleep (one of those strange things am sure)

Keep well My Friend and chase that Dr 😀

Tom Onwards and Upwards x

[wendyduffieldParticipant]

Hi Dai

Great news about you starting Pomalyst soon, it is meant to be the new wonder drug judging by people's experience in the States.

Sorry to hear about the temperature spikes. I had something similar in the summer before I started treatment which my consultant said were myeloma fevers, as no infections could be established.

With regard to the blood sugar levels, mine were checked when I started treatment as I was complaining of frequent urination which I thought may be a urine infection but the doc ordered a blood sugar test and it was 16.5. The doc said it was steroid induced diabetes and we agreed that I would manage it through diet, ie cutting out sugary processed foods as I didnt want to take insulin. They arranged for a nurse to come from the diabetes clinic and she gave me the home testing kit which I use on the days I take dex to keep an eye on my blood sugar levels. In my week off dex, my blood sugar levels are pretty normal and I can eat cake 🙂

Regards

Wendy

[elaineParticipant]

Hey Dai, seems like we are on the starting blocks together, though not on the same track! I've just been informed by my Consultant at Wolverhampton that I've been accepted on the Pomalidamide trial too. Now waiting to sign the papers but thankfully I haven't got to undergo another bone marrow biopsy as I had one recently ( the doctor who did it hit my sciatic nerve, ahhhhhhh), and I have had a recent PET scan which clearly showed how active the MM is!
I have had type 2 diabetes since before MM came along, and although I was taken off oral meds as lifestyle changes brought my blood sugars back to normal, the Dex kicked them back into touch. So I now monitor my blood sugar levels and increase my oral anti glycemic medication to keep my sugars in check on the Dex days. In the scheme of things it's no big deal, lol.
So good luck and fingers crossed that you don't get that pesky C diff back.
As we say up here in the Black Country
Mind the 'hoss rowd
Elaine

[AliParticipant]

Dai

I'm really pleased you are an official trialist for Pomalyst. That's just what you wanted. Please keep us informed.

Love Ali x

[bandityogaParticipant]

Good news Dai

Hope the new drug will get those light chains down and in remission.

Ian had a high blood sugar level before he left hospital but it has now dropped. He had a urine infection and doctors thought it was caused by medication.

Maureen

[mhnevillParticipant]

Hi Dai

So glad to hear your voice again, and at last with some good news and not just for you. You are to be the forerunner for us all with Pomalyst. Let us hope it proves to be the miracle drug for you. Let us hope as well that it triggers some unknown key and kicks these pesky temperature rises into touch.

Re your party .. Let's hope it was extremely premature.

Re the diabetes … hasn't your Practice got a Diabetic Nurse Specialist you could be referred to?

Lots of love.

Mavis x

[VickiParticipant]

Hi Dai,

No departure speeches please! You've got a new drug to contend with and am sure when you are well enough Janet has a list of jobs for you to do LOL!!,

Try to keep those sugars under control, do I recall Janet is an excellent cook? If so it's hard then with all the nice goodies. Onwards and upwards as our friend says!

How's your mum Ali?

Vicki and Colin x

[AliParticipant]

Hi Vicki

Thanks for asking, she's doing really well. Just incredibly tired of an afternoon. She has been prescribed some mild sleeping tabs to help her sleep at night ( but reluctant to take them!?). I'm sure if she slept better at night she would not feel so tired in the day.

We have just come back off of our hols together,fantastic time had by all. Mum joined in with everything and kept up with my boys. Was wonderful to be together :-).

What have you been up to? And how is Colin doing?

Love Ali x

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