[HelenParticipant]

Dear Vikki
I am so, so sorry to read about Colin’s death and hope you managed some happy times over the last few weeks. Wishing you much strength and courage in the next few days and weeks.
Much love Helen

[HelenParticipant]

HI ANDY, JAN, MAUREEN AND CYGNET, I JUST TYPED A VERY LONG REPLY AND TO EACH AND EVERY ONE OF YOU, THEN I ACCIDENTALLY PRESSED THE 2, ABOVE RIGHT, AND LOST THE LOT!
Suffice to say I’m not going to repeat it all.
Briefly
Bloods stable and I’m still remarkably ok. Bad tempered and grumpy but the old man assures me there is no change from normal!!!
I’m now starting cycle 10 of Pomalidomide and have dex insomnia! I’m going to have to endure the side effects as the prospect of quality of life on the next available drugs would be worse I think.. When I said that at clinic they agreed with me!
We are planning a trip to Germany later in the year,
I’m doing stuff but resting too
Son returning home next week … With more luggage! No where to put that and he has to find a job!
I’m enjoying watching the old man painting the holiday house.
We might live in it when we sell our house so won’t do much to it for the time being.
Andy …good luck with cycle 21
Jan …I’m so sad to hear about your light chains, I do hope they go down again and you can put off the evil day of recommencing treatment so you can use the drugs for as long as possible, we really have to trust that the medics make the right choices for us don’t we?
Maureen …have a lovely time in Northumberland … I wandered round the gardens in Alnwick and Cragside for a time last week as we had friends staying, both very beautiful.
Cygnet.. I hope those of us further down the treatment line don’t frighten you. It’s a tough road but there is a lot of time available to most and we have to fill it with good stuff with the people we love. I have to say that in the last 4 years I have done a lot more than I would have done had I not had myeloma. Time becomes increasingly precious, so use it to it’s best advantage.
I shall now stop this dex fueled ramble and try to sleep!
Love Helen

• This reply was modified 9 years, 4 months ago by  Helen.

[HelenParticipant]

Hi Andy
How was Belgium? I’ve never been there. I understand they Belgians make good beer!
I’m not getting headaches this time so maybe I just had a bug, I’m still ok really, one or 2 rough days each week but pretty good overall. Fingers crossed it stays this way. Still no sense of smell or taste, and irritatingly numb fingers toes nose and tongue! I’ve put on so much weight the last few weeks as I desperately try everything just in case I suddenly can taste it!

Hi Jan
The kitchen sounds as though it’s coming on… It always seems to take longer than you expect.. We had ours done when I was unknowingly becoming ill with myeloma back in 2009- I just thought I was working too hard then coming home and cleaning after the workmen, so the exhaustion really had a cause! I think the tiredness when you want to do stuff is probably the most frustrating thing about this disease. We are now going to sell our house and get something smaller, so the sorting out has begun- I can’t believe how much stuff we’ve accumulated over the years!
My son has just done his final recital for his degree – postponed as he injured his hand! I’m hoping he finally realises that musicians need to have alternative careers in order to pay their bills… Unless they are very lucky and get to work with popular bands.
Love Helen

[HelenParticipant]

Dear Vikki and Colin
Congratulations to you both, isn’t it amazing how people can pull something together like this, you must be very proud of them all, though I’ve no doubt you did lots!
I’m hoping you enjoy many more such happy days.
Love Helen

[HelenParticipant]

Dear Vikki
It’s the words you never wanted to hear and I’d like to just reach out and give you both a hug. There is nothing else I can say, it is the news we all dread. I hope Colin can get home soon, so you can at least get to grips with this bombshell in the comfort of home.
With much love Helen

[HelenParticipant]

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

[HelenParticipant]

Dear Jeffrey
Yes I found unpredictable duvet days are are the order of the day, can’t do anything about them..just sleep!
Love Helen

[HelenParticipant]

Hi Vicki
I’m ok, I can’t decide how I realy feel..I look well! But I’m not as good as before, less sociable, more grumpy- if that was possible – I’m very uncomfortable a lot of the time, not enough to increase the painkillers but miserable. My bloods today were ok so I’ve started cycle 9 of pomalidomide, which I will be on until it stops working…. I’m hoping for many months like Andy! So my bone marrow is holding up, which is good. The fact that the drug is working makes me feel I should be able to do more but the drug effects are inescapable and toxic. There is much to do in the holiday cottage, I do bits but get very tired very quickly, I try to do as much as possible but it’s much much less than before, but I am still here and my quality of life is good really, no sense of smell or taste and not feeling my fingertips and feet permitting!
I hope Colin gets over this hump soon, he’s like the rest of us- just keeping going but with very little energy to do anything else, and that makes you feel fed up and bored… Lots of mixed emotions and fears.
That’s a right dexamethasone ramble! You can tell its a dex day!!
Hang in there girl!
Love Helen

[HelenParticipant]

Hi Vikki
As already said- Melphalan is very powerful, hopefully the normal cells will come back, I had 4 months of GCSF when I started pomalidomide as it knocked out my bone marrow and mm and immune system… Hence all the infections …. I think I’m ok now, but then , what do I know.
Hoping that Colin and the medics get it all right, chin up and keep going
Love Helen

[HelenParticipant]

Hi andy Mavis and all, good to see you at the info day andy, and great to see you are at cycle 19, I’m on 8 now. And no Allo graft in sight for me either, does this just make us very special people??
Re the info day, it was an interesting day again, even though I’ve been to several now I still learn a lot from them.
We are spending a lot of time in the holiday house these days- it has one drawback- no signal or Internet yet, and very dodgey wiring so could be months before it can be done as we need listed building consent first. Despite this it’s great fun and I feel as though I’m on holiday all the time.,! I’ve just had to come home tonight to do the washing!
Love Helen

[HelenParticipant]

Hi Maureen
Hope Ian is back home again soon, he does seem to have an awfully bumpy ride with this disease, fingers crossed you can have an event free few weeks ro recover.
Love helen

[HelenParticipant]

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

[HelenParticipant]

Hi Maureen
Hope all goes well for Ian over the next few weeks, just keep smiling and try not to worry too much.
You will need to look after yourself too, it’s a difficult treatment to watch.
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[Author]

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