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Helen 8 years, 3 months ago.
Hi Helen.
Well the Professor gave his considered opinion and SCT has been ruled out again with the same reasons as before due to the hammering my bone marrow has had due to the constant chemo. So even the my blood tests have been good they must lack in certain areas. I’ll have to get the full report from my consultant next time I see her.
I’m glad you seem to be getting along with Pomalidomide now as you say anything that extends life and gives you more time is worth taking. Hopefully a SCT Allo or Auto will be available to you. As to trials they looked like my only option when an Allo SCT was ruled out for me and the distances needed to travel for some was scary but as you say it’s something that will have to be done if necessary.
We are planning on going to the info day, 9th of May I think it is, Steph keeps on at me to book it and I keep forgetting! It’ll be good to meet up again and have a catch up and you maybe able to sell us some time in your holiday home. We’ve booked a few nights in the lakes again for the end of April not as flash as Tuscany though. Oh and my cooking amounts to chopping stuff up, I think ingredients is the technical term, and putting them in the slow cooker and forgetting about it for several hours. Right time to try for some sleep.
Every day is a gift.
Love Andy xxx
Hi Helen
I always used to rely on my relatives for my knitwear, but unfortunately they all had to give up knitting due to arthritis in their thumbs and the weight of a garment just made the pain worse. I’ve tried to learn how to knit on many occasions over the years, but with no success.
My light chains are still going up and down, with the overall trend still slowly increasing. I managed to escape further treatment this January because my last light chain reading had fortunately decreased a little. However, my next reading will shoot up due to a cold virus over the last couple of weeks which usually increases my light chains by 300. Fingers crossed, the readings will then fall a little once my body recovers from the virus.
Love Jan x
Love Jan x
Hi Andy
Can’t believe how long it is since I put anything on here! Apologies for the delay- though have spent 5 weeks with flu and a week in Italy and a dreadful few days having a colonoscopy! However all over now and am on cycle 7 of pomalidomide – light chains have plateaued and bloods holding up despite infection – fingers crossed this is stable for the next few months.
See you on the 9th
Love Helen
Hi Jan
Apologies as above- life has been a bit hectic! I’ve a list of knitwear to complete now – having had so much time off with sheer fatigue. We are now in the throes of getting our holiday house sorted- it’s going to be a very long task I think! It’s great now but needs rewiring so that’s going to be very messy! Still as we are both retired now it will keep us occupied! Hope your bloods weren’t too out of line- the one thing I’m learning about this disease is that if treatment can be delayed as long as possible, then you are keeping future options open, I’m desperately hoping carfilzomib gets EU approval soon, just in case pomalidomide stops working.
Love helen
Hi Helen
It’s good to hear your news that pomalidomide is still working for you and yes, I totally agree with your comments that the longer you can delay treatment then the more chance there might be of new drugs/treatment being available in the future. Although having the flu for five weeks must have been exhausting and difficult for you, especially as you were also going through a colonoscopy as well. What was the outcome? I should think organising the holiday home provides you with a positive focus, but it’s also not doing too much to wear you out whilst your are still recovering and coping with your fatigue.
I’m currently suffering with another cold, following the flu in February. I think it’s because my life has been too hectic over the past couple of months as compared to my usual daily routine. Our kitchen is currently being refitted, which involves so much hassle, dust and disruption, especially with no sink/tap downstairs and different tradespeople in the house all day for a month due to problems/delays. My 12 hours of sleep per night have been totally wrecked with the early starts of the fitters, which hasn’t helped with my fatigue. At the same time, my elderly father (95 years) was admitted to A&E with ill health associated with kidney problems. Thankfully after 10 days in hospital, he is now recovering in a nursing home for a month’s respite. It appears his medication for blood pressure and pain relief for his back problems was too toxic for his kidneys. I now have to sort out a care package for him at his home within the next 2 weeks.
After my flu in February, my light chains increased as predicted by 300 to 1,400. I had hoped this result would improve by my next hospital visit in May. However, due to the constant visits to my father in hospital, his care home and combined with lack of sleep, I’ve now caught another cold this week which is not good news because my light chains will probably increase even further. I just need to stay away from colds over the next few months in order to give my body chance to recover. However, care homes and hospitals are not the places to visit on a regular basis when you have a low immunity.
Take care.
Love Jan x
Hi Helen,
I was just saying to Steph today that I should text you to see if you were going to the info day! Unfortunately I couldn’t get a signal, we’re in the Lake District, and when we got a wifi connection in a handy pub I got an email of your post!
I’ve seemed to of had a cold on and off since before Christmas though things seemed to of eased up in the nasal department now.
Anyway we’ll have a good old chinwag a week on Saturday.
Every day is a gift.
Love Andy xx
hi Helen, jan and andy have been reading your posts it all sounds very daunting. I have just started cdt treatment into my second cycle. my paraproteins have gone down to 8 from 29 already but I am not taking anything for granted as they will probably go up and down over the next few months. I have been diagnosed for a year now. first smouldering and now active in april this year. my light chains had dramatically increased so treatment was recommended. I am on the myloma x1 trial CDT regime . coping but hating the dex. good luck to all of you. dawn x
Hi Dawn,
It can be daunting especially when you’re just setting out on the myeloma journey. Every blood test is approached with trepidation. It does get easier I don’t even ask about my results anymore because I know if I have a problem they will call me as they did my last test with my phosphate being low.
Hopefully CDT will do the trick for you and you’ll get a SCT and years in remission. The worry of myeloma never goes away and I think how you cope with it will define how your quality of life is affected. I personally live each as it arrives I don’t think too far ahead though I have tried and put everything in order for my wife. I haven’t gone down the why me line because I decided it wouldn’t achieve anything. I am where I am living each day the fullest I can and tomorrow can take care of itself. Sorry I think I’m rambling on. Blame the steroids. I’ll review the post when I’m a bit more clear headed and see if it makes sense.
Every day is a gift.
Andy xx
Hi jan
You seem to be having a very stressful time, I found the time when my dad was in hospital last year very difficult as I didn’t want to expose myself to all the various bugs.. I was also relapsing so that made it even more stressful, I hope that your numbers drop now and that you are soon over the colds and he is now out. I shall keep my fingers crossed for you.
Our holiday house is up and running, full of mismatched auction finds but servicqble until the wiring gets done later in the year, then we can decorate and beautify it! I love it though it’s a bit cold as we haven’t worked out how to light the log burner yet!
I’m on cycle 7 of pomalidomide now, and since the flu has gone, I’m much better, got more energy and am feeling much more like myself, so this is all good, the side effects of it are bearable too.
Hi Andy Im looking forward to seeing you and Steph tomorrow.
Hi Dawn
It’s the uncertainty which seems to be the most difficult thing to deal with, but you do get used to it and just plod along, as Andy says , take each day as it comes and don’t plan too far ahead, though im not one to talk as I’m already making plans for next year!
I hope the CDT works well for you and that you get years and years of remission, I presume you are heading for SCT?
I was on the lenalidomide arm of myeloma xi trial in 2011, it worked well for me and fetched the light chains down to zero in 2 cycles, then I had 2 more cycles then SCT followed by 14 months remission. I’m on Dex this time too, but I’m quite used to it now and know when I’m going to be grumpy and tired and when I’m bursting with energy.
Love
Helen
Hi Jan and Andy
Just thought I’d update this post a bit-
I’m now on cycle 8 of pomalidomide and its still working well and I’m still feeling well, the colonoscopy was normal thankfully- Just checking I don’t have amyloidosis too!
The search for an Allo donor hasn’t found me a match, none of my sisters was better than 50% and there is one 75% match in Israel, neither is a close enough match to proceed, so that’s another door closed. 😥
Love helen
Hi helen and Andy
Hope you are both keeping well. Helen glad to hear pomalidomide is working for you. Colin’s consultant was quite negative about it. As far as I am concerned if it works for you I hope it’s an option for Colin is he needs it.
Just going through the hoop. Colin got little success with bendamustine, although I am sure his light chains came down by 2000 after the stopped it. Colin might have got the figures wrong though as it wasn’t a consultant it was a blood transfusion as his red cells were done. He had a bone marrow done and he had 50% plasma, so they started treatment last Thursday with melphalan and dex. He’s just come out of hospital on the weekend.they couldn’t explain it as his latest reading showed his immune system come up to 5, normal but they said it would go down. We have been invited to a wedding Saturday but judging by today he’s as rough as so I doubt he will be able to come (but I so hope so).
Our hospital said they don’t refer people for 2nd Sct in Colin’s case and nor for a donor transplant. I wondered why some do and some don’t. Really stressful as Colin’s has failed on Velcade and bendamustine. Revlimid was first treatment before he has SCT. I am more and more worried. I do look on the forum often but sometimes can’t post. Hope you are enjoying your holiday home helen and Andy you are ok xx
Hi Helen.
Sorry to read that an Allo has been ruled out for you too. We need as many options as possible and it’s always worrying when one is ruled out. The most important thing is that Pomalidomide is working and your feeling well.
Hi Vicki.
What was the reason given for not offering Colin a second SCT? Was it due the length of the remission the first time round?
Bendamustine and Melphalan are both harsh treatments and are probably my next ports of call after Pomalidomide. Plus with our ward having closed I’ll be miles from home when it’s being administered.
Have you and Colin thought of asking for a second opinion re SCT and Revilimid?
Every day is a gift.
Andy xx
Hi there all
The consultants haven’t mentioned a second Sct for ages. They didn’t really give a reason, just saying that they wanted to,get the condition under control first and then we will see, but it was one of those we’ll see that I had no faith in. Trouble is Colin has had Velcade which didn’t work (3 cycles and the light chains went up). He had bendamustine first cycle went from 7000 light chains to 10000 then down to 7000 the down to 6500 but the response was too feeble to carry on. Both have really whacked his bone marrow.
Now he is on the first cycle of melphalan and dex. We will see what that does. What we do know is that he had bloods done today and all of his readings are down. His immune system is down to 0.15. We are amazed they have sent him home! He has come home with 6 days of gcsf. I so hope this works as I don’t know where we go from there since hs has 50% plasma in his bone marrow so I doubt there is much wriggle room from that.
Hey ho
Vicki and colinx
Hi Helen
Thankfully Pomalidomide appears to be working well for you, which is excellent news. At least you are able to spend time in your holiday home and able to enjoy yourself during the warmer summer months. Are your light chains decreasing whilst you are on this cycle of drugs? Did you learn anything about future treatments during your information day? I’m sorry that an Allo is not possible. When I was first diagnosed, my brother was tested as a possible match but unfortunately there was no sign of a possible match.
I’ve just had my latest light chain results, which decreased from 1,400 to 1,036. A great result for me. As usual, the cold/flu virus in February had managed to increase my results by around 300 but my immune system managed to recover afterwards.
Love Jan x
Hi jan
That’s good results for your light chains, long may it last. Mine are down at 100 and have been stable for 3 months now on the pomalidomide.
Is your kitchen finished now?
There were some new drugs mentioned at the info day which are showing promising results but I think that there will be trials here for several years before they are available to us… Just have to keep going on what is available until they can restock the armoury.
Love Helen
Hi Andy and how is cycle 19 going? Have you been troubled with headaches in the week off? I’ve had a lot … It’s like real cold turkey!
Love Helen
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