[VickiParticipant]

Hi all,

Consultant visit today. All Colin’s blood normal, pp undetectable, haematologist fine, kidneys fine, calcium fine.

The body blow light chains risen from 120 to 230. The consultant tried to play it down but said he was giving us a shot across the boughs to prepare for the return. See what the next light chain result is and the next appointment in 6 weeks. Based on his demeanour we don’t have a great deal of hope its a blip.

We are gutted. Sorry to be so down beat but this is upbeat compared to what I feel inside. Colin is the brave one and I am the whimp. He looks like he is taking it well but I feel b angry and this shouldn’t happen. Sorry

[blessthischickParticipant]

Hey there VickiMeek

Just to send you best wishes and to say I’m thinking of you guys. I can’t imagine how this feels because as a smoulderer I haven’t been there…yet. But I went through my expartner being diagnosed with advanced cancer last year and I remember the worry I had for him. I thought my heart was gonna break as I watched him being so brave. He taught me a lot! In some ways the carer side of things for me was worse than being a patient. So, don’t apologise putting a brave face on for him is not easy…and I am sure you are not a wimp! Hang in there.

Lots of love to you both

Kay 🙂

[meganjaneParticipant]

Hi Vicki,

Sorry to hear this news and I hope the next appointment in 6 weeks brings better news. It is hard to come to terms with the numbers going up when you spent so long waiting for them to go down :-(.

I know from what I have read that light chains are more volatile than pp numbers and they can go up and down depending on infections and other random things so you may find it is just a blip. A rise also doesn’t immediately mean treatment, many things are taken into consideration including all the other blood results and how Colin is feeling.

I know everyone is different but for Phil his pp numbers slowly went down during treatment and got to 5 before the SCT (Dec 2012) and then took another 6 months (July 2013)to go down to 0. We then found out in December 2013 that the pp numbers started rising in August 2013 so he actually only had one month of complete remission. This hit us both very hard and we assumed he would be back on treatment within a couple of months but here it is June 2014 and Phil is still feeling fairly good, the pp is still rising month on month but no need for treatment yet as everything else is okay.

It is awful when the numbers start going up but I am now concentrating on each day as it comes and trying to remember there are many new treatment options in the pipeline and that the next treatment that Phil has may give him a longer remission than his first line of treatment did.

I am thinking of you and Colin during this difficult time, Phil and I call this the limbo stage and it is hard to come to terms with.

Megan

[rebeccaRParticipant]

Hi Vikki, so sorry to hear your news – I believe remission is over when the numbers more or less doubles each time over 2 consecutive results – treatment starting when it needs to. I believe Jan had her levels rising well over a year+ without treatment so you can still perhaps get a long drug free time. Not sure what Colin had pre SCT but presume it wasn’t velcade which is what is usually offered on 1st relapse. I found velcade to be both kind and effective with just tiredness as a side effect but very manageable. No hair loss, a little jab a week, only downside being the dex, can work all the way through it. As you know there are lots of options to stamp it down again and look at Davids recent post – gone onto revlimid and is in excellent remission for the first time in 5 years!( believe standard route is velcade then thalidomide the revlimid – unless you look at a second SCT?) Take this opportunity to treat yourselves and plan to do lots on the assumption treatment is lurking ahead – I believe “treats” not only occupies the mind but lifts the mind/body. Remember also no treatment can be as bad as going through an SCT so physically he should sail through it, concentrate both your efforts on working on the mind – MM to me is a huge mind game and that’s what we have to tackle. Stay strong and take care.

Rebecca

[PhilipandfionaParticipant]

Hi

In the same boat, but it’s the PP count not FLC that’s rising. We’re waiting for the 2nd test to see how quickly.
I’ve been absolutely gutted by this too. I keep imagining the worst while Philip just focuses on what he has to do next.
It’s a bitch. It’s unfair. But while we have hope we have to put our big girl pants on and get back on that roller coaster.
I worry, you’re going to worry. Of course, it’s natural, but in the overall scheme of things worry is wasteful and won’t help so I try to push this away and get practical.
Good luck and come here and rant as much as you need xxxx

[VickiParticipant]

Thank you all. All of your posts are very supporting. They in turn have made me encouraged and laugh…..I too must get my big girls pants on! I am not sure now whether Colin’s figures have been on the rise twice in a row or now. The comparison figure we got was something like 110 rising to 220. I’m really hoping it was as a result of Colin having had a virus when we went to mauritius but my negative head says doubt it.

Fingers crossed though! Best to all and enjoy this lovely weather 🙂

Vicki

[eveParticipant]

Hi Vicki

Sorry to hear you think it’s coming back,it is a bit of a blow and takes time to get your head round it,but you have to pick yourself up and get on with it.

If I was you I would try to fit a few more holidays in,because you just might go on watch and wait until treatment is needed,so make the most of your time now.

Worrying about tomorrow spoils today.Love Eve

[HelenParticipant]

Oh Vikki
What can I say, it’s so disappointing and frightening. Eve is right… Get off on holiday again before treatment starts but I keep my fingers crossed that it is a blip. Up our way treatment starts when you get to around 25% of your starting number.
Love Helen

[mhnevillParticipant]

Hi Vicky

I’m also very sorry to hear about Colin’s latest scare. I do hope the figures settle down so he doesn’t have to rush for more treatment.

Glad you got your holiday in. Time to plan the next one and one in the eye for MM!

Very best wishes.

Mavis

[janwParticipant]

Hi Vicki

I know it’s really worrying and stressful when you see light chain numbers increasing. However, hopefully it’s just a blip due to Colin’s recent virus on his holiday. My light chains usually increase by 200 following a cold virus, but six weeks later they drop again sometimes back to their original number and sometimes just slightly higher that the previous reading. My consultant usually tells me not to worry with a one off increased reading, but suggests a waiting policy until a further two readings have been monitored to gain a greater understanding of what’s happening with the myeloma.

Hopefully, Colin’s light chains might just be slowly increasing and could take years until any further treatment is required …. which is basically what has happened to my light chain readings. My SCT was in September 2010 and since that date, my light chains have steadily, but slowly been increasing over the years rising to around 1000 just prior to Christmas last year. My consultant started to discuss further treatment and advised I had another set of x rays taken to see whether there had been any changes to the condition of my bones. Thankfully the x rays were OK and unexpectedly, my light chains decreased to around 750 this year, rising again to over 800 last month. As Megan stated, light chains are volatile and although I know a cold virus or infection can increase the numbers, I haven’t got a clue as to why my light chains decreased by 250 at the start of this year.

Whilst I realise that I am slowly approaching the need for further treatment, I hope this will be many months in the future.

Fingers crossed Colin’s next set of results will be OK.

Take care.
Jan x

[VickiParticipant]

Hi all

Thanks very much for your encouragement. Colin’s light chains started at 31000 so I don’t suppose they would let it go that far! We are still marvelled by the fact that he didn’t have any kidney damage so if there is any luck at all in this we were lucky then!

I’m really heartened to hear of the potential for a blip. Ellen the nurse is also sending me a booklet on the light chains testing so I can get my head around that. I’m trying not to go on too much about it though as generally Colin is taking this in his stride……on the face of it! Trouble with me is that I want to fix stuff and this is one thing I can’t do 🙁

Mavis we are taking your advice to get a holiday in so that we can get all our friends together too. We started last night by going out for a really nice meal. This is what I can’t understand Colin is so well (touchwood), better than he has been for months! Mavis if I recall you didn’t have a transplant did you? Did you get to remission with the medication only? Is it lasting? Colin doesn’t have an cells in the back pocket and they had real problems getting them last time so we don’t think it will be an option again even if he wanted to give it a go!

Thanks to you all your support really matters

Vicki (and Colin)…..I feed him snippets of info!

[mhnevillParticipant]

Hi Vicki

Yes, you are right I didn’t have an SCT. I had CDT and six lots got me in complete remission and so far I have done 21 months and counting. I’m still having hing four weekly Zometa infusions. I’m now nearly 4years post diagnosis so feel grateful. Not an easy ride, bit I’m still hear to tell the tale!

So, there is lots of hope for Colin.

Enjoy all the life you can together. That’s our philosophy. We have just spent the enormous sum of £4000 to buy a new Quingo Mobility Scooter That parks itself in the back of the car by remote control! It is great as Gordon doesn’t have to lift it in and out, like he did with my old one. Also, I have already experienced the freedom it gives as it can tackle hills and it is quite hilly round here in Bradford.

Love to you both.

Mavis

[VickiParticipant]

Thanks for that good advice Mavis and well done you for your ongoing remission! Glad to hear the scooter is making a real difference for you and less lifting for your husband, we have had a good day today. This is what I don’t understand Colin is very well, eating well and generally ok so it doesn’t seem right. Now I’m sitting here looking for signs or what I’ve missed seeing if the illness is coming back, that’s said if I couldn’t spot it when his light chains were 31000 I’m not likely to spot it when they’re 200! Enjoy the good weather all 🙂

Vicki and Colin x

[bandityogaParticipant]

Hi Vicki

I hope Colion’s FLC go down next meeting with consultant, it may be because of infection. We are waiting to see if Ian’s will still be rising when we meet the consultant in 2 weeks time. Hopefully it was a blip in both cases.

Off to Cornwall next week Saturday for a week, can’t holiday abroad yet.

Thinking of you both.

Maureen

[VickiParticipant]

Hi Maureen,

Firstly hope you have a great holiday in Cornwall. Lovely whatever the weather!

It’s very odd Maureen, Colin has been better recently than had been for months. I wasn’t sure from the consultant whether they went up the time before and he hadn’t said anything or whether this was the first time they’d gone up. If it was the first time Colin did have a nasty chest infection when we went to mauritius so who knows it could have caused a blip. However because the consultant said it was a small rise but went on to say he was mentally preparing us? Then went on to say he probably wouldn’t have told us this time had it not been for Colin considering a back operation! I really don’t know but given that Colin has been in remission for 19 months we are preparing for the worst, however depressing that is!

Hope that Ian’s light chains stabilise. Is he on treatment? This is so hard for all concerned isn’t it but we have to keep going. Enjoy your holiday 🙂

Vicki and Colin x

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