This topic contains 42 replies, has 11 voices, and was last updated by 
mhnevill 6 years, 9 months ago.
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 Helen
I too think Ian should try all treatments until either his bloods are bad or he has bone fractures. I feel so stressed when we see this consultant and would prefer to see another one, as there are 4 in the practice but no specialists. I will have to speak to the specialist nurse to see what she can do to avoid this consultant.
Ian is going to ask to stay on farydak even if his FLC are rising as they are only 113 at present, and hopefully he can produce stem cells.
He hasn’t had a trial as there aren’t many in Scotland and the consultant doesn’t want us to go down south but that may be our next step. Pomalidomide didn’t work for Ian but they only added dex without the cyclo.
So sorry to hear daratumumbab has stopped working and they doctors find another treatment that works for you. It is a worrying time but trying to take one day at a time and planning a 2 day trip for next week if the weather improves.
Love Maureen
Hi Helen.
Well I survived our trip to Belgium without having any major problems. Though I had to go straight to the day unit before going home for my regular appointment. Privigen, blood tests and drugs pick up. I’m now on cycle 4 of MUK 8 the best I can say it’s doing is keeping me stable.
Sorry to read that Daratumumab is not working for you. Hopefully they’ll find a suitable trial for you before they resort to Melphalan or Thalidomide. Have you been on Bendamustine yet? They keep saying that could be an option for me.
Hi Maureen.
It was great to see you and Ian the other day. Hope you had a safe journey home. Good luck with your battles with the consultants.
Every day is a gift.
Love Andy xx
Hi Andy,
It was good to meet up with you both again and hope to see you in Scotland next time. Ian is having cyclophosphamide on 28 August and then seeing if he can harvest stem cells on September 7. I do hope that he will be able to produce enough.
Our usual cheery consultant said it would be Ian’s last treatment and he may get 18 months and TBI has a high risk of causing secondary leukemia. Came home depressed. We went to see the specialist last Wednesday and he didn’t know of any risks and he didn’t want to build up our hopes but he has had a lot of success with TBI. He also said that this wouldn’t be Ian’s last treatment as he is still fit with no organ failure. Is it costs? Feeling so much happier and going to ask how we go about changing Ian’s care to the specialist.
Hope you are keeping well and looking forward to your next trip to Greece.
Helen,
Hope all is well with you and you are enjoying this great weather we are having.
Maureen x
I just signed into page after a very long time. I think, like others, sometimes it just seems important to keep your head down and just keep plodding on! However, I do often wonder how you all are as after all we are the old staters now.
Ian’s strap line about “using every day” is written at the top of my diary.
Helen and Andy, I do hope the Trials have worked for you after you have move on from Pom……..
I am approaching seven years since diagnosis. My PP levels are now gradually rising again, but have only reached 5. I asked what next treatment would be if they began to rise sharply and the Dr. Replied that he wouldn’t like to say as there are so many new drugs being tried.
I continue on four weekly something infusions. For me this is the wonder drug. I has a nasty fall while staying at my daughter’s in Luxembourg. They have oceans of ceramic tiles. I needed three solid ambulance men to get me up, but no broken bones. It is a miracle because five years ago my Consultant was extremely worried about the state of my bones.
Aren’t we all lucky to be alive. Yes, quality of life isn’t always great, but we are able to achieve some of our goals.
Maureen, I do hope things go well for Ian. I think he is brave going for a second SCT.
Love and blessings to you all.
Mavis x
Hi Mavis
Good to hear from you and hope your PP levels stay stable and don’t cause you any problems. There aren’t many of us left on this site since diagnosis and I do prefer this site to the support group on facebook.
Things don’t look too good for Ian at the moment as his kidneys are not functioning very well. His bloods, kidneys etc were all good last week to go ahead with his second SCT. He has had high dose cycclophosphomide in preparation for harvesting and his kidneys are now very poor and we were told to expect the worst. They aren’t sure if it is the myeloma progressing and can’t tell us until Friday but in the meantime I am going to phone the myeloma nurse and also the myeloma specialist at The Beatson in Glasgow. They have reduced the dose of gscf and said the SCT won’t go ahead now but he is having radiation instead of mephalan which won’t affect his kidneys. Feeking very anxious but still trying to stay positive and keep praying.
Love Maureen x
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 Helen, Andy and everyone else out there!
A happy and peaceful Christmas.
We are so fortunate to still be here aren’t we. I always feel so grateful to all who took part in earlier Trials and to all the researchers.
I am still just on Zometa infusions. Wanted to come off them, but Dr agreed to 8 weekly instead of 4 weekly. He said this was for prophylactic reasons. PP continue to rise, but slowly.
We won’t let this beat us yet. In spite of very restricted mobility I managed to celebrate and preach at our Midnight Communion. Probably the last time at a Festival, but hope to continue one monthly in ordinary time.
May 2018 be a peaceful and hopeful one for you all.
Love
Mavis xxx
Hi Helen and Mavis.
I’m doing okay thanks.
Helen I’m on a Panobinostat regime at the moment. I was on MUK 8, Ixazomid, but as usual with me it didn’t work. I’m finding Panobinostat, Velcade and Dex a bit challenging but it is keeping me stable at the moment. You can only have 16 cycles of it and unusually the cycles are only 3 weeks long. I’m the first and only one having this treatment at our unit.
Bendamustine is still waiting it’s turn. Hopefully some more friendly options will turn up.
We’re still getting away as much as possible.
I’m sorry your PPs are still rising Mavis hopefully it continues very slowly. Like you I’m grateful to be still here and hopefully we’ll be still around for sometime to come.
I’d like to take this opportunity to wish everyone in the Myeloma family, and I include researchers and MyelomaUK in that, a very Merry Christmas and a Healthy 2018.
Every day is a gift.
Lots of love.
Andy xx
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 Helen
Happy New Year to you too. I was exhausted after Christmas having done two big services with help of crutches and perching stool!
Our lives have been made doubly difficult because Gordon isn’t at all well with heart failure and hand and shoulder pain which we have eventually found out is a boney spur putting pressure on a nerve in his neck. We have been struggling but don’t want to bring in more help as it ties you down so. Well at least it takes my mind off me!
After my last hospital visit, when my PP results weren’t there, the Dr promised to send them on to me, but, of course, they haven’t arrived. This means when I go in February my results will be a month behind.
I’m interested you are on CDT. Did you have it when you were first diagnosed? I did and it brought my PPs down to zero in six months. When I need more treatment I have been wondering if they will let me have it again. My hair thinned and my taste was affected, but at least it was in tablet form. How are you getting on with it?
I think you are wise to book a holiday. Because I have problems sleeping in a bed we don’t know what to do. It is our a Golden Wedding Anniversary in August, but I think we will just plan a couple of small celebrations here. We hope to visit Kate and family again,in Luxembourg, in early summer but this noe depends on Gordon being up to it as well as me!!
Still, as Andy says “every day is a gift” so we battle on.
Lots of love to you Helen.
Mavis xxx
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 Helen,
Thanks for the information. I’m glad that Thalidomide is working so well for you like it did for me. At the moment my PP is settling around 10 so thankfully no recommendations for treatment yet. Have also persuaded them to let me reduce the Zometa infusions to eight weekly. I just don’t want to be tied to hospital appointments I’d I can help it. As you say, that is the benefit of CDT that it is tablets.
Gordon has been diagnosed with arthritis which we find surprising as it came on so suddenly. Thankfully Gabapentin has dealt with his shoulder and neck pain, but he is still having extreme difficulty with his hands. Still I am hopeful that things will improve.
Have managed to book a four day break in Bridlington, in June so something to look forward to. Also it is our 59th wedding anniversary in August so both must survive till then! I am 73 this week and feel very grateful to have reach this age,
Keep battling on and enjoy your new home.
Lots of love.
Mavis xxx
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