[wendyduffieldParticipant]

Oh dear Ozzy, not the news you want to hear, sounds like your consultant is on it though, are you experiencing any pain or other symptoms? Good luck tomorrow and keep us posted.

Wendy

[KeithH17Participant]

Hi David
I'm not sure your PP figure suggests a relapse before having a BMB first to confirm.
After my first SCT I achieved Zero PP's which stayed that way for nearly 2 years before going up to 5 and then 28 at which point I had a BMB which confirmed a relapse. Your own PP figure is not outlandish and could be a blip either way no Consultant would confirm a relapse on that alone.During my latest relapse my own PP's went from 30-55 all within 2 weeks which proved a relapse without the need for a BMB.

Hang on in there David,maybe things are not as bad as you think.

Keith.

[HelenParticipant]

Dear Wendy
I'm in deep admiration of your fitness regime, I gave up playing tennis about 10 years ago after rupturing a calf muscle and realising that it could easily happen again so only do walking now! My daughter has caught the bug for the great north run and has done it twice now but says she sees it as putting something back not a love affair with running! We watch and wait and see, I think it's a bit addictive.
I've not arranged holidays yet, I want to go to Peru but I need my cough to settle down for a few weeks before I contemplate the thin air, plan to go to France as well but not when yet.
Love Helen

[tishwishParticipant]

My husband Peter, his latest readings show an increase in pp's from 6.5 to 11. Peter had SCT on 1st Dec 2011 and has recently had his 1st year anniversary. Peter's pp after sct was 6 and has wavered around that mark for the past year. The latest reading was from blood tests on 31st October and we saw the consultant last Wed, she was not unduly concerned but did say that it was a reasonable jump in a month. We are back at clinic again for another check up on 6th February. Peter is feeling rather tired and has had an increase in pain although he is never pain free due to severe bone damage. He does not worry about what may happen…….i do enough worrying for both of us. I am really hoping and praying that things are ok for quite a while longer yet

Trish xx

[angeParticipant]

Hi Paul and Gayle, so sorry to hear about your latest results. I have sent you a private message. Take care Andrea xx

Hi Wendy, good luck with your tests. Hope you manage the triathlon! I am a newbie here so find all of you very inspirational. All the best Andrea xx

[ozzyParticipant]

Hiya Ange
I tried to reply to your email Ange but it came back. We will also try to attend in March -health permitting. Well I have relapsed and will be starting Velcade tomorrow. I have picked up a cold and have a cough so I dont know what they will do and I'm not sure how they give this Velcade.Hope the snow is not too bad for your farm.
Hi Wendy
I have had some back ache and pains up my side but I generally feel ok apart from this cold I've just picked up. My pps started to rise from 4 to 12 in Oct so I guessed something was happening. My consultant said I was unlucky as he thought 5 years was more the norm for the sct so don't panic all of you. Trust me!!!When he hopefully zaps the figures down he mentioned another sct.
Good health to you all
Ozzy

[wendyduffieldParticipant]

Just an update, I had a light chain test done privately recently in the hope that it would give me peace of mind but it didn't as it showed another rise from 39 to 77 in my kappa light chains. I was gutted and devastated. My support nurse agreed that it would seem to be the case that I was relapsing but still said I may not need to start treatment yet if all else is well. I will see a doctor this Friday and have another light chain test and hope that the rise isn't as dramatic this time and don't need to start treatment. I will also need to make a decision about whether to cancel my holiday to India on 1st March.:-(

I feel so gloomy and sorry for myself as I know the general consensus is that the first period of remission post transplant is meant to be the longest then about half of that after the second and then what???

Ozzy, sorry to hear that you have relapsed. I'm sure they will still give you the velcade unless you are really feeling ill. Hope it goes ok.

Take care all and keep warm!!

Wendy

[ozzyParticipant]

Hiya Wendy
That's my way of thinking too with the second sct and I dont know whether I really want to go through another.I feel like you fed up that my transplant didnt last long and what the future holds for me. I was hoping to go to Canada this year but there will be no way now. Your holiday is in March so you should be able to make it. When I went down the hospital where I had my sct last week the doctor said like it was the norm – have the velcade knock it back and when figures are low another sct. I started the velcade and dex today as the doc was keen to start today as my figures are going mad and as long as I can tolerate it another dose Thursday. I've had antibiotics for my cold ,antivirals and other tabs so I will be jangling.
Best wishes and there has been so much snow here in Wales I have been hibernating.
Take care Ozzy

Ozzy

[HelenParticipant]

Dear Wendy
This is a terrible blow for you, but don't cancel your holiday just yet, were you to be going with friends? I feel sure that your docs would let you go, unless you don't feel up to it of course.
Let us know how you get on on Friday,
Much love Helen

[eveParticipant]

Hi Wendy and Ozzy

Sorry to hear you have both relasped there is not much one can say you must both be devastated,I can tell you Velcade is a good drug and seems to be having a good effect on the Myeloma,Slim got on better with the Velcade than CDT,he had 6 cycles straight after CDT,because they found the myeloma had gone up to 80% in bone marrow.

I know you must feel devastated at the moment,and the thought of more treatment after all you have been through,Slim felt the same,but at least the drug is available,it worked for Slim,better hope than no hope at all

My thoughts are with you both.Eve

[tomParticipant]

Hi all

Well I am sorry you two have relapsed 🙁
I do hope the next move gives you both remision and little side effects.
Stay strong and well.

Love to you Both
Tom Onwards and Upwards x

[KeithH17Participant]

Hello Wendy/Ozzy I can understand your concern about relapse. I've had 2 sct's the first lasted 2yrs 4months the second 7months when I had velcade which got me into remission in less than 2 cycles although I did all 8.
You must watch out for neuropathy and or spasms in the hands and feet also tiredness and constipation.
In all I've relapsed 4 times with 3 in just a little over a year. After you first step off the first SCT wagon it's all down hill very quickly apart from a small minority of cases unfortunately I wasn't one of them but I do hope you guys are the rare exception to the rule. The problem is when you first have a transplant your body is much more prepared and strong to take the treatment thrown at it but the next time the marrow has taken a hiding and doesn't come back as strong which is why the sct is not as effective and doesn't last as long. All other treatments are simply to suppress the disease with short remissions at the end of them. Mine were Revlimid 5months then Bendamustine which lasted only around 2 months but admittedly was compromised by infections and low blood counts.I am now on my 5th treatment which is CDT. Talking of holidays Wendy and Ozzy I can understand your frustrations I've been trying to get away for ages now but unfortunately i can't get away from the hospital so I'll just have to carry on being a patient patient.

Hope all works out for you both,relapse is a total new phase of this horrible disease but we just have to face it down and fight the fight in a different way.

Keith.

[wendyduffieldParticipant]

HI KEITH,yes I realise the law of diminishing returns when it comes to a second stem cell transplant have told me medical consultant that I am not keen to have one until maybe further down the line holding it in reserve, so I have asked them to come up with something else instead. The good news is that my consultant says I should be fine to go to India on 1st March as long as my kappa light chains are not above 600 by the time of my next test on Feb 15th which as they are at 77 gives me a bit of leeway,he says below that level they shouldn't cause any damage so hopefully I can go to India even if I have too start treatment when I come back. Hope the CDT works for you Keith

Wendy x

[mhnevillParticipant]

Dear Wendy and Ozzy

So sorry to hear that you have both relapsed. I can imagine how gut wrenching it must be. I do hope that the next lot of chemo works for both of you. And, Wendy, I do hope you get to India.

Just spent the money we would have used to go on a holiday last year, if we could have gone, on a new computer for my husband. Not the same as a cruise, but hopefully it will make up a bit for the fact that he too had to do without going away. As I am currently in remission, and my mobility is improving, so we are hoping to get away somewhere this year. I think not being able to plan a holiday is one of the worst things.

Love to you both.

Mavis x

[ozzyParticipant]

Hiya all
So glad your trip to India is still on. Thanks to you all for your good wishes. I have had four velcade's in the past two weeks and I am finding it really hard. I had an overnight stay in a& e last Sunday(no beds slept on a trolley!!!!) as temp 38.7. Had another one yesterday and temp rising again. I have been sick and have terrible consipation.I cant remember feeling this bad on the CDT. I am soooo tired. Well enough about me moaning.
Good health to you all
Ozzy

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