[wendyduffieldParticipant]

Hi all

Thought I would let you know that although clearly I have relapsed I haven't started treatment yet. The reason being that I am still feeling well with normal bloods and kidney function and I am waiting for the Onyx trial to start at the MRI which compares Carfilzomib to Velcade (50/50 chance). The MUK5 trial was considered but as my plan is to have a second stem cell transplant it wouldn't be an appropriate use of the trial apparently as you are monitored until relapse. It feels strange having such a high level of light chains but not starting treatment as I know some of you would have started around 100 (not sure what the equivalent in PPs would be) but I have been assured by my consultant that no major damage is being caused at this level so in the meantime I've got another 2 weeks reprieve and intend to enjoy this lovely weather we are having.

For more detail, I've put the link to my latest blog update below

http://wendyduffield.wordpress.com/2013/07/12/trials-and-tribulations

Wendy

[eveParticipant]

Hi Wendy

Being a carer on this roller coaster for 2 1/2 years ,I am beginning to wonder do numbers matter!!!,I am asking this with the knowledge that all Slims numbers are now not considered reliable markers to monitor the Myeloma.

eg: bloods HB 12. WC 1.2. Neuts 1.0. Platelets 57 . Myeloma last BMB 30 percent in bones,no more damage but in pain,may be not Myeloma pain,but related to what Revidimide does to body,????

He had a clot in artery removed,plus a visit to A&E 7 hours with different doctors,and I new they did not know why his leg had swelled and blood under surfes of skin,was it vascular ,DVT or Revidimide reaction,or low platelets,or infection., I had no choice but to take him in just in case of infection ????
Truthfully they do not know,yes the bloods are causing all the problems,but I only have his general health to monitor him:-/

So do numbers matter,??? I do not think they do, as long as you feel ok .

I hope the trials work out for you Wendy,good luck with your race,why worry about tomorrow and spoil today.Love Eve

[janwParticipant]

Hi Wendy

I am sorry to see your light chains have now reached 2000, but at least your other blood tests and kidney functions are OK and you feel well which is good news. Do you think your consultant will recommend a BMB before you start the Onyx trial?

It looks like my kappa light chains are also on the increase again, with my last three readings of 574, 700 and then 798. Like you, all the rest of my tests are absolutely fine and I feel OK. In fact two weeks ago my neutrophils were 1.9 which is entirely different from virtually constant readings of around 1.2 for the last three years. Perhaps the increase is down to a good boost of vitamin D from the lovely sunshine over the last few weeks? I say this because the only other time my neutrophils reached 1.9 was last year after spending 10 days in the sunshine on the Canary Islands. Although I don't think my consultant is too impressed with my interpretation of why my neutrophils have increased, but it sounds like a good incentive to try a few more holidays abroad to test my theory!

It's strange how individual consultants/hospitals appear to apply different limits on the levels of kappa light chain readings before they recommend further treatment. I have been given a target of 1,000 before further investigations or relapse treatment. But this target is probably because of my previous bone damage occurred when my readings were around 2,000. I wonder why some myeloma patients can reach readings of many thousands of light chains within their system, but they do not suffer from any bone damage?

I hope the Onyx trial goes well and your light chains start to decrease.

Jan x

[wendyduffieldParticipant]

Hi Jan

My consultant isn't suggesting a BMB at the moment partly because it may be a trial requirement so he doesn't want to me to have two (very kind!) and partly because we know I have relapsed and it wouldn't affect his management of that. I am however having a skeletal xray survey soon not because of any particular bone pain but because I have a small lump on the bone on the side of my shin which needs to be investigated.

I am sorry to hear your KLC's are rising, I know how anxious it makes me feel and my consultant has never really given me a cut off point saying it would depend on my blood counts and kidney function. My damage was kidney related not bone related. But if you got bone damage at 2000 klc you don't want to go much higher than 1000. I do think I would have started treatment by now if the trial had been ready.

I definitely agree that sunshine seems to help with blood counts etc and we are all getting plenty of it at the moment so try and make the most of your time before treatment starts.

Wendy x

[EvaParticipant]

Dear Wendy,
Sorry about the rise in your freelites. It must be so difficult waiting for a trial to begin. I hope someone can give you a bit of inside information so you can make an informed decision. I think your training can only make you fitter and help you withstand the debilitating effects of treatment.
I'm on cycle six of Cybord – rather exhausting, with an array of side-effects- but doable and starting to be effective. No idea what I might do next.
Best,
Eva

[HelenParticipant]

Hi Wendy
Well, I'm so pleased to see you so well despite the rising sflc's, and still aiming for the triathlon, very commendable. I've just finished cycle 3 of the Velcade and am about to go on sick leave again as I'm getting a bit tired and grumpy now. Fingers crossed for another few months off treatment.
Love Helen

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