This topic contains 29 replies, has 14 voices, and was last updated by 
Vicki
Ian is on his 3rd cycle of velcade and dex. After 1st cycle FLC went from 820 to 545 but rose to 660 after 2nd cycle. Consultant thought it might be a blip but would think about changing treatment if FLC continue to rise. I asked if he would add cyclophosphamide but said no as velcade wouldn’t be working. Not very happy so phoned Maggie. She said if Ian has had an infection recently that FLC would rise. She also advised that if the consultant was intent in changing treatment to seek a second opinion to add cyclophosphamide. Ian had an infection in his back wound so hoping that was the cause, he is also feeling well and improving in posture and walking
We haven’t been to Cornwall so looking forward to holiday. We are flying to Bristol and hiring a car to Hayle near StIves . We have rented an apartment on the beach.
Love
Maureen
Hi Vicki
As you know we are going through the same thing. Started back on the rollercoaster, Mum just completed cycle 1 of Velcade/Dex.
I completely know how you feel 🙁
Any time you need to rant, feel free!
Love to you both
Alison x
Hi Vicki not been on here for a while sorry to read your post hope it is just the virus Colin picked up on holiday. We saw Mr Shield last week I’m not sure I like him yet much prefer the others seems we get him every time! Geoff is a year in remission (touch wood) we went to the info day at Bournemouth at the weekend and you can go for a second SCT even if you have no cells frozen they said they would try to collect enough cells to go again. Another thing there vaccinate at 12 months this is something EJU don’t do they advised to at least have flu jab and tetanus x keep positive 🙂
Hiya Vicki and Colin
Just reread your initial post. If your consultant is leaving it for 6 weeks before Colin’s next blood test I would say he’s not to worried. He probably thinks it’s blip caused by the infection but can’t come out and say it in case he’s wrong. The blip could also be caused in the lab because no two test can be exactly the same so some variations can and do occur.
I don’t know much about FLC or their readings but I’m sure they’ll be like PPs reading just an indicator of how active the myeloma is. My consultant does worry until there is a definite trend and my other bloods start to show the effects of the myeloma – but there again I’m a strange bloke with a strange case as you know.
Fingers crossed its a blip. Oh just remembered my first trip abroad with myeloma ended with me going to the hospital the day we got back with infections and I had to go in twice a day for two weeks for all sorts of injections and infusions. I can’t remember what happened to my PPs but I’ll try and find that out tomorrow err today. It’s my sleepless steroid night every Tuesday.
Hope every thing pans out ok.
Every day is a gift
Andy & Steph xx
Hi Andy
Thanks for the encouragement. It’s weird because Colin has on the whole been very good of late. He has a few spells of tiredness but generally ok. Part of the fatigue is the worry about the results I’m sure! Colin reckons the consultant said that if pushed he’d say it was coming back because we were at the 18 month average. I don’t remember that but I was in denial at that point!
How are things with your bloods? Are the pps coming down still. You are a marvel, inspiration and a medical conundrum, all rolled into one.i expect you’ll reply at 2am if the dex effect continues.
Enjoy this great weather 🙂
Vicki and Colin xx
Hiya Vicki
I only take Dex once a week now. 40mg every Tuesday! So I’m usually awake Tuesday nights and part of Wednesday night. Though it’s not been to bad this week.
My PPs showed a slight rise at the end of last cycle tut guess I’ll never get them down to single figures. I feel ok though my back is starting to let me down again.
I’m sure Colin, if he was anything like me, was stressed whilst on holiday worrying about everything. I know was the first trip we had abroad. All the what if’s were running through my head. Once home with my infections I relaxed and everything returned to normal, whatever normal for me is, as I got back into the usual routine.
I’ve not read that about an 18 month average for remission after SCT and it doesn’t sound very high to me. Though what do I know lol.
Ok today has turned into tomorrow or is that tomorrow has turned into today? Either way I’m going to try and get some sleep now.
Every day is a gift.
Andy xx
Hi all
Well the appointment came and went….Colin hasn’t relapsed yet but had a biochemical change! Effectively it’s on the way but not here yet. Apparently Colin’s light chains have gone something like December 13 (normal 40), February appt 75, April appt meant 140, June appointment about 248 and we don’t know what they are this time so effectively they have been on the quiet creep since February. Apparently the bloods are all fine, apparently haematologist was exceptionally good :-). But I knew it wasn’t good when he started off with any bone pain?, any infections?…. All the standard questions. Anyway he said all bloods were ok but in Colin’s case he’s interested in the light chain score as pp wasn’t very high when he had 31000 light chains!
He has said SCT second time is unlikely but now the options are thalidomide, dex and cyclophosmahide or velcade injection and steroids. They hope it will come on slowly so treatment may not happen til after Christmas but maybe as early as September 14…..depends
We will see what happens…..all the best
Vicki and Colin xx
Hi Vicki
Ian’s FLC rose from 52 to 640 before treatment was started.
Hope Colin has a few months yet before treatment. Why no second SCT?
Love Maureen x
Hi Vicki,
Fingers crossed it will be a slow relapse. It is hard to stop worrying but you just have to take it a day at a time. It is a good sign that Colin is feeling well and that the blood results are good. We found out in December that Phil’s pp had been rising for five months and we were sure he would be on treatment by February. Here it is August 2014 and a year since he started relapsing. The pp number is still on the way up but very slowly and Phil is feeling pretty good so no need for treatment yet. Phil’s next treatment may start in October or it may be next year, as with everything mm related everyone is different but numbers rising does not automatically mean treatment starts again right away. It is hard watching and waiting but Phil and I are enjoying the time he has treatment free.
I hope Colin continues to feel well and that after Christmas you post to update us that are still watching and waiting 🙂
Megan
Hi Vicki
I’ve not been on the forum for a while as I’m busy working my way through my bucket list. I know exactly how you are both feeling. I had my SCT last August and got complete remission. However two weeks ago I was told the cancer is on the way back as my light chain reading has jumped to about 250. I had another blood test and am due to see the professor again on 4 August for an update. He plans to put me on Pomalidomide and Dex. Mind you, I’d had a bad cold for over a month when I had my bloods done. Maybe it was just a blip due to the cold infection. I’ll find out on 4 August. Living with this thing is such a rollercoaster of emotions.
Keep fighting.
Scott
Hi Scott, so sorry to hear you’re relapsing earlier than you should have. I’m 7 months post SCt with light chains jumping about – and am interested is this a trial for Pomalidomide and dex? or have you exhausted the thalidomide, revlimid old standard route? I ask because I am always quoted that route and when the time comes don’t want to do it that way. I have read how Pomalidomide is better for kidneys – much more so than revlimid so you can have a much higher dose than revlimid without it impacting the kidneys. Have you been able to access because of kidney problems? Good luck with it all.
Rebecca
Hi Rebecca
No its not a trial. My kidneys are only working at about 20% and as such I’m not eligible for any trials. The drug companies want to test on fit !! myeloma sufferers only. People with impaired kidneys may have an adverse effect on any tests.
I’ve been through revlimid, lenalidomide, bendamustine plus the sct. I’m fast running out of options and I think its now pomalidomide or nothing. Its been approved by NICE for people in my position so hopefully this will give me a bit more time before the inevitable happens.
Keep fighting.
Scott
Thanks for that info Scott, my kidneys are currently about 28 -30 egfr but when I SCTd at Leeds they said when I relapsed I could ask to come to Leeds for a second opinion and see if there were any trials I could get on as my small hospital wouldn’t know about any trials so I assumed we could still get on some? At 20% does that mean they’re thinking of dialysis? I spent a few months at 16% but it was never mentioned and to be honest I didn’t feel as tho it hindered me unduly – unless I was in shock for all that time – which is quite possible. Good luck with it there are lots of promising results and it is thought to be better on kidneys.
Rebecca
I’m on the dialysis watch list at Kings. I have to go to the renal clinic regularly and if my kidney function drops to 10% then I’ll be put on dialysis. They have been pretty stable at around 20% since I got this disease back in 2010 so I’m hoping to avoid that problem.
Cheers
Scott
Hi Scott – as I have never been allowed access to the renal clinic, despite asking, have they told you how to preserve what you have eg with a special diet or kidney friendly food or anything? or is it just carry on as normal and no special diet will help?
Rebecca
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