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 Vikki
It’s all a worry for you, I’m just hoping the revlimid does the trick- I’ve had to have a few months of gcsf to keep my bone marrow up – it seem to have worked and my bloods are low but ok still – I will keep my fingers crossed that Colin has a similar result
Love Helen
Hi Jan
I’m hoping so too, I have to speak to the transplant team again to see what they think, there are new drugs coming along but you are right , they take a very long time to get into common usage.
The moving and everything is an effort to have a bolt hole if I can’t go far away, and to find something much smaller in town. Though these things never seem to dovetail together properly! I do like to have a project on the go! And there is a limit to how much knitwear ones relatives can politely accept! This way I can paint the windows and scrub floors to keep myself entertained if I feel like it. Our retirement plan had always been to do up a wreck, though the house we have seen only needs decorating in the short term. Anyway we will see how we get on.
How are you doing, I presume your light chains are behaving?
Love Helen
Hi Vikki
I’m ok, been ‘off’ the drugs this last few days, and it’s been rough but I’m close to normal again today, hopefully it just continues to work… what options did the specialist nurse talk about for Colin? Or was she just generalising?
You are right about positive attitudes, it does keep you going.
Love Helen
Hi Andy
I’ve been having a few of those dex mornings myself recently! Have been up around 6 am half of this week! But not this weekend, I’ve felt quite grim really, I can’t work out if the Pomalidomide is cumulative in its toxicity or I’m just sickening for something else… No doubt time will tell. Anyway the drugs seem to be relatively ok and I’m able to do most of what I want, though they do make me feel weary.
Yes wedding is now in the past, they seem quite happy… Just had them round for lunch today, they went off to the pub quiz about an hour ago, I declined that offer!
As for moving… We are doing this all the wrong way round but it feels like time is of the essence at the minute so the holiday house is in the throes of purchase; it’s just an hour away so if there are problems we can get back home quick. We can rent it out easily too as its in a touristy place in Northumberland. I also have a large family who are looking forward to ‘borrowing’ it. We do need to downsize our house though …or we can’t afford to live! but we had planned to replace a few windows this year and they were ordered before holiday cottages were even thought of! All very complicated… But they are delayed until April so can’t sell here until summer.
We are going to Italy mid April – north Tuscany and I’ve a fancy to go to Greece again too if I can !
I’m back to the clinic on Tuesday ..this is where they tell me if there is a donor match, I still don’t really want to think about it. My last bloods were better, light chains down to 144, neuts 1.7 so better than they have been for over 4 years. They were 0.3 in November, so maybe the Pomalidomide will last a while. I don’t relish travelling for drug trials but I will if I have to as that might be the only way to extend life, if this transplant option isn’t available. That sounds terrifying, I do apologise to anyone who is upset by my post!
Are you planning to go to the info day? I’ve forgotten when it is, but will go if possible.
Keep up the good work with the cooking… That’s my task too!
Love Helen
Hi Maureen
We had a lovely day thanks. Ian isn’t having much luck with these drugs at the minute, when do they plan to start dtpace? I’m finding the Pomalidomide unpleasant but bearable … Igo tomorrow to see what the bloods are like… So fingers crossed it’s still working!
Love Helen
Hi Vikki
It must be very difficult to just watch and not be in control, I was so well in myself last October that when I had to restart treatment as it was so seriously worsening, I was quite shocked. Now I’m on treatment, I feel terrible, but my bloods are looking better! So it’s possible for Colin to feel bad from either cause really. If he’s on large doses of Dex as well then it’s very easy to feel muscle weakness and lacking energy. Has he had spinal compression before?
I’ve not had any loss of height… I have no obvious bone lesions at all… Just generalised pain in my back shoulders and hips…. I seem to have the ‘anaemia first’ sort of disease! I suppose this makes me ‘lucky’ in that I’m not as disabled by myeloma as some!
However, my disease was progressing and if I have an Allo transplant, there is a possibility that it could give me several more years, the graft versus host/tumour can be effective in controlling the myeloma and some people get many years from a successful allograft, always supposing there is a very good match out there! I think another auto transplant is also possible if they find the cells and there isn’t anything else they can offer me! I won’t find out for a couple of months if there is a match so can’t really think about it until then.
On a daily basis I’m afraid I’m a bad tempered shrew to live with (and my saintly husband probably needs a medal) I don’t ever feel ‘well’ but I don’t look ill at all …so I tend to try to continue life as before, it is frustrating, tedious and emotionally draining, especially when everyone around you is doing what they like! I find I can spend a couple of hours a day at full speed, then it tails off! I have to rest for a while then I’m good to go for another couple of hours. Now that I have retired life is very different and I do have trouble finding enough to keep me busy! But I think I was finding work difficult for the last few months..
Don’t know if this helps!
Love Helen
Hi Vikki
Hope colin has a better couple of weeks from now, I’ve been on Revlimid and relapsed on it, then Velcade which gave me about 3 months before the numbers started rising again, then I had high dose steroids alone which did nothing at all, now I’m on Pomalidomide.
Apparently it’s not uncommon to be quite sensitive to the drugs but to get little or no length of remission afterwards. Refractory means the drug has stopped working or didn’t work for very long before the disease came back.
They have suggested I have a second transplant and are looking for a donor as none of my sisters were a match. They are looking for my spare auto cells, for some reason they think I only had one set! They also think that my bone marrow is not producing enough cells to even attempt a second harvest! All sounds a bit grim really!
Love Helen
Hello Mavis good to see you popping in, how are you doing? There are no trials going on here for people with relapsed/refractory myeloma, it was mentioned that if there is no matched donor, they would look for a trial and I might have to travel to London etc to take part,well its a case of ‘whatever it takes’ and we wait and see.
Andy – if they have found my stored cells I will ask how they plan to proceed, auto then Allo might be too much since the last time was horrid ,I don’t know what the plan will be, I suppose I’m trying not to think about it too much until I have to! The mortality stakes are a bit scary and now that I’ve clocked up 60, I’m in the dodgy age group!
We aren’t booking a holiday yet, we decided to move and buy a holiday cottage, so that’s a bit of a project I’m really looking forward too, only hope I can manage a paintbrush and not just be the tea lady!
Take care all
Love Helen
Hi Ron
I too would get the antivirals as soon as possible, the earlier they start the less side effects and long term pain from post herpetic neuralgia the better. I had shingles last year, it was extremely painful and I was very unwell for a few weeks. She has my sympathy.
we are not supposed to have the vaccine, it is too dangerous.
I understand that shingles often breaks out when the immune system is low as the infective cells of chicken pox have been lying dormant often for years in the spinal nerves, we don’t need to come in contact with anyone contagious to go down with it.
Good luck with 111! I’m with Andy …phone the haematology ward and ask them what to do.
Love helen
and again!
Ali glad to hear your mum is doing ok at the minute, I’m awake late… It’s dex day today and I have numb feet, hey ho the joys of the treatment, but I’m not too bad overall, and as long as it works I will put up with it.
Hey Andy
Good work with your bloods, I’m on GCSF to keep the good guys going – so have to go every 2 weeks at the minute, sometimes I feel as though I live in that hospital!
Take care all
Love Helen
Oh no half my post is missing! it went a bit like this!
Vikki, what was the outcome at the clinic? I’ve banned my other half from asking too, I’ve asked him if he has any questions and I might let him ask a pre-planned one, just so he feels included
hi Vikki And Ali
The wedding was a lovely day, bride and groom never stopped smiling, can’t really believe it happened, all those months preparation and it was over very quickly, I had to slope off for an hour or so but managed to be there until the bitter end -about 03.45! It was great- as she is a singer of choral music she had lots of her friends there from national youth choir and the millennium youth choir so,the music was magnificent. Weather was good… No glitches really except we ran out of beer before we ran out of champagne,!! Clearly, I have given up drinking so there was a surplus!
Vikki, what was the outcome at the clinic? I’ve banned my other half from asking too, I’ve asked him if he has any questions and I might let him ask a pre-planned one, just so he feels included
Hi Andy
It was a lovely day- went by very quickly – the pair had a great day and never stopped smiling, weather was good and we all walked to church and reception. I’m a bit bored now without it to help organise.
Pomalidomide isn’t too bad – I’m surprisingly well apart from the chest infection, dreaded gut problems, slightly sore feet and tiredness, all manageable with minimal grumbling!
I shall ask about auto/Allo… I do dread the thought of it again as I took about a year to get over the first one but will wait and see if there is a match, then decide. It does seem like a life line might be being thrown…I just have to catch it! I remain optimistic. The plan is to do Allo, if a match, while Pomalidomide is working and disease burden is low as possible ..so later this year perhaps. If no match I stay on it until it stops working.
I will relay your message to prof! And must start booking holidays again!
Love Helen
Hi all
I’ve just posted a résumé of my anniversary treatment to date! Then spotted your post Vikki!
Bendamustine is a next drug for me too, if Pomalidomide fails – and assuming no further sct. It is given IV and you lose your hair etc so it’s more onerous than the oral chemo.
My disease is IgA lambda light chain oligo secretory mm – so I had a pp of around 3 and sflc 800 at diagnosis. Both very low but not quite nonsecretory. I’ve still got unmeasurable pp’s but sflc jumped to 900 in November.
So ask Colin to find out if there were ever pp’s detected and what sort of light chains he has- I’m all for well informed patients! Second autos can be done, just can be complicated getting cells if the bone marrow is shot, but there are people out there who get long remissions from second transplants apparently. I was told today that they probably wouldn’t be able to get any more from me, I did remind them I have a second set in the freezer, I think they are going to look for them. Anyway- also ask -are they contemplating an Allo for him?
You are so right that it doesn’t get easier, if anything it’s more complicated! The decisions seem much harder to make. I’m stopping now as I seem to be rambling!
Hi Ali, how’s your mum? And Andy any more Greek odyssey planned?
Love Helen
