Ok – I’ll be brief here-thank you all for replying it means a lot to get messages from others in the same boat.
Interferon didn’t work, I’ve had a nasty bout of pneumonia from which I’m still recovering and I’m back on cyclophosphamide- at a small dose because my bone marrow is now so fragile it is barely functioning- platelets and blood transfusions are the norm now. I probably have a few months left- it is the weirdest feeling- I look well and I feel ok, but I’m making plans with Macmillan rises and district nursing teams about end of life care!
I’m going to Rome next week for a few days- really looking forward to going – we are taking the family so I’m planning on doing everything I can – even if it’s only going by taxi to the outside of things – just to conserve energy-and I’ll be the one in the coffee shop.
I’m going to stop here –
Love Helen
I thought I’d just pop in for a minute and see what’s going on- I’m going slowly downhill now. My myeloma is catching up with my kidneys and causing trouble. I have failed Daratumumab and Panobinostat now and went on to Interferon yesterday with very high steroids as a back up / so I have my fingers crossed that they will work effectively for a while love Helen
Hi Peter
I’m going on Interferon in a week or so and then it will be Melphalan and cyclophosphamide if it doesn’t work or work for long- then there is Bendamustine. I’ve not had Carfilzomib or Ixazomib as they aren’t available to me unless some arm twisting can be employed somewhere- and I’ve no Bone or kidney damage at all so there’s no need for anything there- my myeloma affects my blood cells primarily and wipes out Haemoglobin and Neutrophils first- I’ve been on supportive immunoglobulins for about 2 years now since my 2 episodes of Sepsis in 2016
Love Helen
Hello Susie Jan Rebecca and everyone- I’ve not been on here for a long time and am totally unfamiliar with the website now- I’m currently on Panobinostat and Velcade- but I’m beginning to relapse again- not many drugs left now which makes things a bit difficult- hope all of you are doing well though
Love Helen
Hello Mavis
I wasn’t given thalidomide at the beginning as I went onto the myeloma 11 trial and was randomised to have revlimid – so thalidomide is new for me and is working very well – I’m now on my 9th cycle of it and my numbers are still going down. I’m hoping for a very long time on it! Though as you say – the thinning hair and peripheral neuropathy are a problem but at least I have an all tablet treatment which makes life easier and I can do most things that I want to do.
I hope Gordon is getting better and that you manage to get away on holiday
Love Helen
Hi Phil
Congratulations on 7 years – I too reached that milestone on 3rd February- it’s not all plain sailing but all the new drugs coming along make me feel very positive for us all.
Take care of yourself
Love Helen
Hi Michael
I’m really glad you are doing ok with Daratumumab, sadly I had to come off it after 3 months as my disease went wild and I’m now on thalidomide- which fortunately is working.
You are right to put your experience of it on here, it can be very helpful to know others have been there too.
Love Helen
Happy new year to you all, I’ve just been away for a few cold days in the Scottish Borders- very nice but too much eating and drinking!!
Maureen I hope Christmas for you and your family wasn’t too difficult- I can’t imagine what it is like to be alone for these occasions after so many years together. I’ve been thinking about you lots
Mavis, how are you after your busy time of year? I’m hoping that you had a rest after Christmas Day and that your pps slow down! It’s an awful feeling going to the clinic to see what they are doing- I’m horrible to Tim for days before I go, it’s just the worry but I have to keep apologising to him!! He’s very good he says he understands that his role is as my whipping boy, i think that just makes me feel worse!
Andy – I’m on to cycle 7 of CTD and feel ok, quite tired but I’m doing as much as possible so that’s probably why!
I’ve booked a holiday in Italy in April- this is the earliest I have ever booked to go away so I’m keep my fingers crossed that I haven’t been too presumptuous here and I get to go – we are taking both our children, son in law, my sister and brother in law- so it should be a good one – my daughter is a very good cook and I’m hoping that she is captivated by the local markets and the catering kitchen in the house we’ve booked! Ever hopeful!
Lots of love to you all and every one else out there
Helen
Hi Andy and Mavis
I hope you are both well at the minute – I’m not too bad – recovering from a chest infection again but other than that the CTD has now dropped my light chains down to 229 from 1265; all good.
I managed a trip to Crete in November – marvellous- weather was superb and there were no crowds, like you Andy, I had immunoglobulin before I went and remain on gcsf twice a week. But no problems while we were away. Bendamustine is next on the list for me but now that Ixazomib is approved maybe they will let me try that? There is also a possibility of a trial with Car T cell therapy which sounds feasible, but that’s not up and running yet – so we’ll see.
I’m sorry to hear your pps are rising again Mavis- let’s just hope they go very very slowly or even stabilise themselves again.
And Maureen- what can I possibly say to you about Ian, I am so sorry to hear about his death, this is such a cruel disease, I’m sending you a private message.
Well it is Christmas morning so I’ll wish you all a very peaceful time and a healthy new year
Love Helen
Hi Maureen
I’m saddened that your consultant is so negative- what’s wrong with trying to eke as much of out of life as possible- he should at least be offering the littlest rays of hope. I suppose he’s being pragmatic in that when the myeloma is aggressive it’s realistic to say that the drugs do not work as well or for as long so life is now more limited than before- but I’d definitely go for the trials – I was told I’d probably get a few months from pomalidomide and in fact got 2.5 years – not to be sneezed at!
I’m now entering the realms of uncertainty again as my light chains have risen to 1200 so the Daratumumab is clearly not working and I’m off that trial. My docs are going to scratch their heads and see what they can give me next – probably Melphalan or thalidomide as I’ve not had either of them. They’re also looking at the various trials around the country for any that might be suitable.
I know that these are long shots but I’m not ready to give up yet!!
Love Helen
Hi Pam
It’s nice to be hospital free for a bit – I went to France for a few days before my sct.
I’ve usually felt and looked the picture of health since I started down this road – and though I’ve had some terrifying infections I’ve recovered very well- if not quickly- it’s vital to keep checking your temperature.
I’d go for a donor transplant like a shot – despite all the risks – if there was a donor- though I’m getting a bit elderly for it now – they like you to be under 60.
Good luck with the sct- don’t forget to suck the ice, take loads of very soft baby wipes, lots of old nickers, and some pads in case of diarrhoea- drink until you think you might float off the bed and make sure the wig is ready for the 9th day post
Love Helen
Hi again Maureen- this is the American site so I don’t know if the drug company are able or likely to request extensions of trials outside the US – anyway asking doesn’t harm- after all ‘shy bairns get nowt’ as we say round here
Love Helen
Hi Maureen
Hope you and Ian are ok- I’ve just been looking at the clinical trials web site (clinical trials.gov) and it seems to suggest that the early access Daratumumab trial has been extended- it might be worth investigating to see if that is really the case and if Ian is eligible to go in it.
Love Helen
Hi Gerry
Has anyone suggested Pomalidomide? It’s available now? As for trials a distance away- several people I’ve met recently travel 2-3 hours to be in the trial I’m in and others- they don’t seem unduly concerned about it though they do find very tiring
Love Helen
Hi Pam
I have the P53 deletion- as I understand things it means that it’s more difficult to treat and get drug free remissions. I’ve been on almost continuous treatment since diagnosis as a result.
I had a stem cell transplant nearly 6 years ago and was on maintenance revlimid afterwards- most recently I’ve finished pomalidomide after 32 months and am now trying Daratumumab to hold the light chains back.
A donor transplant was recommended as the best treatment for me but unfortunately there is not a donor match. One of our myeloma group has recently received a donor transplant and is about 15 months post graft now – looking good and doing lots.
I think you have to just take the treatment as it comes and hope to get as long a time out of each one. Myeloma treatments are not an easy thing to get your head round and to adjust life accordingly- I’m still finding it difficult!!
Hope it all goes well for you
Love Helen
