[andygParticipant]

Hi everyone.
Just returned from our first trip away since diagnosed with MM in October. We had a lovely 3 night stay in the lake district. The weather wasn't the best but without some rain there would be no lakes 😉 We didn't venture too far as my back was not too good – but with some pain killers and a few beers we managed to have a good time. We stayed at Bowness on Windermere. Even had a boat trip in the rain. The food was good and the beers were just what the doctor ordered.
When we got home on Friday it was straight to the day unit for my weekly blood letting. I also got my latest PP's results. My PP's had risen back up to 40 from the 35 of my previous test. I guess this MM has it in for me! Anyway I start my 4th cycle of Rev/Dex today. I know Rev/Dex can be a slow starter but I did hope my last test was showing a little progress in my battle with the disease. Looking forward to my breakfast and 20 Dex for the next 4 days :-p Fingers crossed that my next PP test at the end of this cycle shows some improvement. The battle continues.
Take care and keep up the fight.
Andy

[tomParticipant]

Welcome Home Andy, Am pleased you had a great time, Bloomin shame about your PP's going up though 🙁 but am sure the drugs will get on top of them for you.

Enjoy Breakfast with the Dex :'-(

Tom "Onwards and Upwards"

[PerkymiteParticipant]

You sound like Mo and me, we "enjoy" no matter what the weather! Just keep going I am sure you will get there, just keep bl**dy well going.

kindest reagards – vasbyte

David

[VickiParticipant]

Hi Andy

Sorry to hear your pps went up a bit,praps it's just a glitch. Any way at least you had a good break. We Brits know that sunshine hols are a bonus not the norm. An old boss of mine had a phrase, KBO. It took me a while to work out-keep battling on!!. Keep doing that. I reckon Toms recipe of vodka and red wine might be the answer, try that 🙂 🙂

All the best,

Colin and Vicki

[KeithH17Participant]

Hi Andy,
Sorry to hear about the rise in your PP's but pleased you had a good break in the Lakes.
I started the Rev/Dex on Tues and feel absolutely wasted. The whole of my body feels numb but at least the lump on my head seems to be disappearing. I'm back at the Hospital for bloods and Zometa on Thursday when the PP's will be monitored. Mine shot up from 5 to 10 and then 22 in the space of 2 months and the BMB showed 35% MM activity in the Marrow which triggered the need to start up the treatment.

Take care Andy and I hope the docs get to the bottom of things for you soon.

Keith.

[DaiCroParticipant]

Hi Andy,

I'm glad you had a good time in the Lakes… I always enjoy my stays there, regardless of the weather .

The fluctuation in your PP's must be galling, to say the least… it's not so bad for me and Keith because we are on R & D as a maintenance regime… as long as our numbers stay relatively stable we are OK but you need yours to actively drop to a given figure for your SCT… I hope they can force them down over the next few cycles.:-|

Have they given any indication of a suitable number for your PP's? Either way, let's hope for some progress soon.:-)

Dai.

[GillParticipant]

Here's hoping that the rev and the dreaded dex do the trick

Dex for breakfast? I think I would rather stick to my toast and chunky marmalade washed down with a strong cup of coffee

Love from Gill

[eveParticipant]

Hi Andy
I noticed you joined the forum in Feb this year,but started treatment in Oct 2011,I have followed your different treatments,I am just surprised they do not seem to give them much time to work,I say this because Slim started treatment in January 2011 and was still having chemo up to the Christmas2011.
It took a long time to get that stage for sct and as you know his was in May this year.So 18 months long haul.
I can only tell you Slims readings were not showing true,and only having BMB showed the true position,he did have lots of BMB I think 5 all together. If he had not been on the Myeloma Trials and having BMB I do not think it would have shown as CTD failed,then he had 4 cycles of Velcade before they took BMB to know if it was working.carried on for 6 cycles

If i am correct you have had 4 different treatments in 7 or 8 months?????
Have you questioned why they have with changed treatment????:-S

A few people have gone for SCT with levels high,You are young enough to have a good result from SCT.Is this your next option??
Were are you being treated. Love Eve

[andygParticipant]

Hi all

Many thanks for all the replies 🙂

Dai when I was first diagnosed my PPs where 50 and I was told I had to achieve at least a 50% reduction before I would be considered for SCT. Wether that is still the case I will check when I next see my consultant. They have already tested my brother and sister for matches for a Allo SCT my brother wasn't a match still waiting on my sisters test.
Obviously a PP count near 0 as possible is the goal but a low 20's would be a start.

Eve I have been having similar thoughts recently – however once my PPs moved they have never been below 35 and have be stubbornly staying in the 35 – 41 range. I'm not sure if I'm falling foul of the NICE (good acronym) rules as I've not been on trails! I did have a BMB a few weeks ago after cycle 1 of Rev/Dex and nearly all my marrow had been wipe out though there was still Myeloma cells present. Guess I need a long chat with my consultant. I know at the moment I feel ok the only trouble I'm having is with my back – my last MRI showed no further damage and I think I don't get to many side effects.
Anyway the battle continues.

Take care all
Andy

[eveParticipant]

Hi Andy

That is why I asked were you are having treatment!!!,At the end of the day how do you feel about your treatment,There are Trials going on in all the major hospitals.
If you put Trials in the search engine on here it will come up with all trials plus were they are,If you ask Dai he will tell you his experience of not having the best of treatment.
There is a lot to be said about being on a Trial,I know Guinea Pig springs to mind,but you must feel low and sometimes you have to say I want some answers.
Do you know what type of Myeloma you have?? Some are more aggressive than others,
I can only give you an example with Slim.He has Kappa Light Chain IgG .With bone damage plus tumour and lesions,I was never told had to ask,and when asked what stage was told they do not stage it any more!!!,I know staging is a combination of bloods,kappa light chains plus bone damage.Told with new treatments looking at 7 years.!!!:-P
We considered Slim had no choice,he was offered trials and took them,We do not look at 7 years,just day by day and treatment.plus he went on the intensive pathway.18 months later,SCT| complete now wait for BMB to see if it has worked.

I am sure they have not liked us questioning everything,I want the best for Slim and will keep questioning and wanting to know how were and why.
Love Eve

ps in other words a pain in the ….. Eve

[mhnevillParticipant]

Dear Andy

I am glad you managed to have a break in spite of the PP numbers. Let's hope you manage to kick them into touch soon.

All best wishes.

Mavis x

[DizzylizParticipant]

Hi andy,

Sorry to hear PPs have risen but hopefully this next cycle will kick start there retreat!
Glad you were able to enjoy your trip to the lakes me and kev were there in April also staying in bowness beautiful place!

Thinking about you fingers crossed for better results

Love liz & kev xxx

[Author]

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