[andygParticipant]

Hi everyone.
I had my weekly visit to the day unit for a bit of blood letting and results getting.
I had my blood taken with the usual efficiency. Then I asked about the results of my previous paraprotein test. My nurse rang my consultant and she said she would come and see me. The consultant said we should go into an office for a chat :-0 That was unusual – worrying a bit now. Anyway when we were safely sat down she told us my pp's had gone down from 41 to 35 😀 not a big Jump but heading the right way. She also said I was still Neutropenic but she had spoken to Prof Jackson at Newcastle and I was to continue my treatment. So after a two week break I'm back on my Rev/dex.
I'm gonna – with a little help Rex. & Dex. – get below my mid 30 sticking point of pp's. So for now it's keep taking the medicine till the end of cycle worrying about blood results.
Luckily I'm feeling ok and we're looking forward to our break away in the lake district in 3 weeks time.

Keep fighting everyone and take care.
Andy xx

[ElizellenParticipant]

I am glad that the "come into the office for a chat" turned out to be good news rather than bad and that those pesky pp's keep going down!!

Eliz
XX
X

[DaiCroParticipant]

Hi Andy,

You are right, its not a big jump but it is going the right way and that's all the matters… it shows the medicines are winning and a couple more little jumps and you will be in the 'end zone'. When I was on Velcade I was told that the magic number was 18… 18 or below was the end zone… so at 35 you are not far off.

My Revlimid numbers came down from 311 to 156 then went back up to 225… I carried that number for 3 weeks… not knowing (and I suspect neither did my medics because they only seem to check my file on the day of my consult) that an interim FreeLight test showed that the numbers had started coming back down with a reading of 170(ish). My last reading was 130 (ish)… which shows a double dip… some kind of consistency, which is what I want to see. I still have to get the numbers right down (to 18 or lower if I can) but like yours they are going the right way and that will do for me.

I do appreciate that there is a big difference inasmuch as I just need to get my light chains down and keep them down.. whereas you need to get them to a maintained level to allow you to go forward with your next procedure… your SCT… but I feel that that is not far off now. Something is working and there is no reason to doubt that that something will carry you through to the magic number and the start of your harvest. 😎

Regards

Dai.

[PerkymiteParticipant]

Keep going buddy – just keep bl**dy well going.

Kindest regards – Vasbyte

David

[eveParticipant]

Hi Andy
I know how hard it is to remain positive,but it has started to go down,very slowly but it is in the right direction.When Slim was on Velcade it was awful waiting,he had to have 4 cycles before they would take a BMB,as bloods and light chains were considered un reliable as they were not showing a true reading,and on top of that the consultant said it was not worth seeing him until BMB unless some thing was worrying us:-P(we were just scared his bone marrow would go further up from 80%).They see it every day,and forget how it feels to wait and worry that its working,but Hey we got there in the end:-)

You will get there Andy,its been a 18 month haul for us to get were we are now this Myeloma Bubble has taken over both are lives,

You be very careful with your body as you are neutropenic love Eve

[TerryMGParticipant]

Hi Andy,

Glad to hear that things are going in the right direction. I was interested in what others said about levels etc. My Igg was 70 when first diagnose in June 2010. It came down to 5.9 by September 2010. Doctors said they had never seen such a drop. However, because I also had spinal cord compression I was found to have DVT?s caused by Thalidomide and inactivity. I was taken off Thalidomide and prepared for STC. In hindsight I think I had my STC too early because I felt like s*1t. I relapsed after two months with a large tumour where the Hichman line was taken out. The Igg parameters on my hospital printout are 6.34 to 18.11. However, when I am well I am outside the lower level around 5 to 6. During this period I did not have my blood results at King?s. If I had seen them creeping up, I would have brought these to the doctors attention. After I relapsed a made certain they provided the old results and I could clearly see I was heading for a relapse well before the tumour got as big as it did. King?s Doctors kept on telling me it was a Hematoma. Anyway, at Sidcup I always get the blood results (very good lot of staff and very helpful). I now track all my blood results and have learnt what they are and how I seem to be affected. We are all different but I think I would like to reduce my levels like you Andy not to have dramatic swings like I have. So in your case this could be a good thing.

I am off Velcade as I had to get my platelet levels up to have biopsies. I filled in a routine GPs blood test form Cholesterol and I also ticked the PSA box (prostrate specific antigen). Only to discover when I got my weekly blood results I had the GP?s ones as well and PSA was 22! (I was 3.1 when I was diagnosed with MM) I have had prostrate cancer confirmed and now waiting bone scan and other stuff.

Still just another procedure to go through because ?failure is not an option?! Keep in there Andy. Regards?.. Terry MG

[TrigletParticipant]

Hi Andy

Just caught your latest post -'blood letting and result getting', love it, it did make me smile:-D

I can only endorse what David said about keeping going, and am so pleased for you that your pp's are heading south at last. R&D sounds just the ticket for you, same as it is for Dai.

Enjoy your break and stay well

Rosie xx

[mhnevillParticipant]

Hi Andy

Just a note to say glad numbers are moving in the right direction, even if slowly. Enjoy your break, hope the weather is kind – and be encouraged that something is working for you.

Very, very best wishes.

Mavis x

[tmcParticipant]

Hi Andy
so glad to hear your pp levels are going south and hope you are feeling good.
Dont; get over tired on your trip and stay well
Love Teresa

[Author]

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