This topic contains 61 replies, has 17 voices, and was last updated by 
Hello Jan.
It’s good to hear that the new treatment is bringing down the Myeloma levels, but the side-effects can be pretty hard to take. My husband is currently fast asleep in his chair, which is probably because of the breakthrough painkillers today but is often caused by the post-Dex crash. He’s on Carfilzomib and Dex, which brought his pp levels down a lot to begin with but caused initial kidney problems which fortunately they managed to resolve. It’s a bit of a roller-coaster and sometimes difficult to tell which drug is responsible for which side-effect. Yours were among the posts I found helpful and encouraging over the 5 years since he was diagnosed so it’s good to know how you’re getting on. I hope the treatment continues to work well for you and that the side-effects become more manageable as time goes on.
Pat
Hi Jan
I’m so sorry to hear of your relapse and do hope the present treatment becomes more tolerable for you. I had Revlamid for my induction and it gave me many awful side effects for the first 2 or 3 cycles, but they seemed to ease off from then on. So I hope the same happens for you. It did however work extreemly well ending with zero PP’s
I’ve just finished treatment after my first relapse. It was Velcade, Melphalan and Prednisolone. It worked well for the first few cycles then started to plateau, finishing at pp-11. However my pp’s started to rise as soon as treatment stopped. My next lot will be the same as you’re getting.
I dread the Dex. Had it with the Myeloma 11 trial and as with others didn’t suit me one bit.
Very best wishes to you
susie
Hello Jan,
I’ve just read your post, especially regarding the drug side effects, which can be very troublesome and difficult at times. Forgive me if I’m about to talk around a few negative issues, but I think you can draw some good positive conclusions regarding these — hope so at least!
Firstly (and I’ve no idea why second SCTs are generally not as good as the first ones). You have come through your second SCT well, unlike a couple of my myeloma contacts who certainly haven’t (one passed away). So it seems to me that you have a fairly robust metabolism which certainly helps. Secondly, in a small number of cases Revlimid can do serious damage to the liver. You haven’t experienced this (you’d probably be hospitalized!), so this is also greatly in your favour. And Revlimid is an effective MM drug to take. And here, the options regarding your side effects could be looked at. I don’t see you have any further options other than drugs? Unfortunately they’re critical to delay this vile disease from progressing to its advanced stages. Maybe you can see your consultant concerning a change of dose or frequency? Sometimes a little ‘tweak’ here and there can work wonders. Or maybe try another line of treatment? But there’s a word of caution: NICE have a framework regarding lines of treatment and I understand that if/when you change you effectively lose a line, and unfortunately there’s not an infinite basket full of treatment lines to choose from. So it’s best to talk to your consultant and emphasis your side effects, and see what he/she comes up with.
Good luck, Peter
Hi Susie
I stopped being a frequent visitor when MyelomaUK did an update, quite a few years ago now, and the result for me made it too frustrating to use. I started to use the Facebook group but now I rarely post on there due to, in my opinion, there being too many replies to some posts that are simply repeating what has already been said or have a totally opposite opinion. Making it hard to sift out the “good” advice.
So being on a Dex night I’d thought I’d pop back here and test out the latest updates
Every day is a gift.
Andy xx
Hi Andy
I’m glad you did decide to pop back and that you’ve had a reasonable response to your latest treatment. You’re another of the people on this forum who have given a lot of encouragement to those of us who use it, even if we don’t post often, and I’d been wondering how you are when you’ve not been on for a while. Thank you for that. I hope you get the treatment-free break that you’re hoping for. And that you’re still managing to get away for the occasional holiday to Greece!
All the best, Pat
Hi Susie
I think Michael is right, all of us have times when we don’t want Myeloma issues to dominate our lives, even while we cope with its consequences for our mobility and general levels of fatigue.
I also have had so many problems with the new Web Site. I can’t count the number of times I have got a new password!
I still find the Forum useful, such as when I recently diagnosed with necrosis of the jaw, (Thanks Jan!). I do hope it continues to help as many folk as possible, especially folk at the beginning of their Myeloma journey m when it is so scary.
Greetings to you all out there. Let’s keep fighting!
Love Mavis x
Hi Andy
So nice to hear from you after so long. I hope you are doing well.
Your advice to me in my early days of M M were so helpful and I was very grateful so thank you.
I’m heading to my 3rd line treatment but i’m enjoying being drug free.
Keep in touch Gary.
Best wishes to all
susie
Hi All,
Many thanks for all your welcome support and encouragement. I’m just about to complete my fourth cycle of Ixazomib, Revlimid and Dex (iRd) which is continuing to reduce my light chain levels from 3000 in May 2018 to 266. However my results from the middle and end of each cycle show my light chains still significantly increase during my week off each month of chemo, which is why I’m reluctant to reduce any of the drugs until my myeloma levels reach and maintain their lowest possible level. I’m just thankful I’m responding to treatment. Based on my experience of my previous myeloma chemo treatments, unfortunately I know that I tend to suffer with a range of side effects from the drugs with nausea, peripheral neuropathy and fatigue being fairly common for me.
It appears to be the Ixazomib which has been responsible for my nausea, but has now been controlled by changing my Emend anti nausea drug (which was also responsible for increasing my side effects to the steroids) to a weekly strong anti nausea patch. However the combination of Ixazomib and anti nausea patch does cause bad constipation which is proving to be an ongoing battle despite prescribed laxatives, stool softeners, together with fruit, fibre, prunes and plenty of fluids. The high dose of 40mg of weekly steroids provides some welcome energy for a few days and a relief from the ongoing fatigue, but the sleepless steroid nights do not help with the steroid withdrawal crash. Similar to Pat’s husband, on these days I’m without any energy and unable to do anything apart from catching up with sleep. The peripheral neuropathy has been OK for the last few months, which probably has been down to the heatwave because as soon as the temperature drops the pain and throbbing in my lower legs returns, but so far has not increased on this treatment.
Susie, I hope you get on well with iRd and the Revlimid doesn’t cause you too many problems. Fortunately I seem to be able to tolerate the 25mg of Revlimid. It’s strange how we all react so differently to each drug.
Jan x
Dear All,
Ive managed to log in again …yes new website progress or dampened down the fire by control?
I am in a very good position at present .I relapsed after my first sct and was put on rd but was blocked by nhs england from free access to i to make ird .However after my second sct in January I have achieved a significant complete response …….minimal residual status ? not done in Sheffield ( if i had had ird i estimate i would about 20 % more chance of achieving mrd -ve status based on my reading of the scientific literature none of which comes from the uk . ….. just to remind you I am a retired consultant physician who has been on this site 10 years and until a few months ago received myeloma tracker from this website and which produced a list of all scientific publications on myeloma …most of which confirmed how far we are behind most of the first world and indeed second world .. triple therapy is now standard elsewhere but does NOT INCLUDE EITHER THALIDOMIDE OR CYCLOPHOSPHAMIDE which have not been mentioned in treatment regimes for about ten years …in the usa thalidomide is regarded as the LEAST EFFECTIVE AND MOST TOXIC agent ..cyclophosphamide is history .
However I am pleased to see Susie and Jan on IRD and hope you both do well . yes the dexamethasone is an absolute pain ( yes ive been there) but we are stuck with that medication in most effective regimes for the foreseeable future .
I agree this website has lost some of its effectiveness but it is retrievable . Health unlocked (nhs sponsorhip )and facebook will never get down to nitty gritty unpleasant truths which are required to make a forum effctive.
So the truth is the uk is at least 5 years behind in access to the best treatment for myeloma because of nice and nhs england ,except where some brave heamotologists ignore the threats .VRD should be the first minimum line treatment for all until tailored therapy (genetic studies to detemine therapy)arrives . daratumumab triple regime for first relapse after first sct and so forth . Myeloma uk should be fighting for this and all haemotologists should know this but…….
I am going to write to see if i can get myeloma tracker back so i can keep this forum informed .
Best wishes michael
Thank you Michael very informative & interesting post. Best Wishes Diana
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 Helen,
Yes, I’ve not been on here for a while (but got the notification email regarding your post), and as you say this website has changed a bit!
I understand that you’re on Panobinostat and VelDex? And that you’re starting to relapse again. What has your consultant said regarding the remaining line(s) of treatment available to you? And what happens then? NHS England and NICE can’t leave you ‘high and dry’, so I’m assuming they’d then have to pay for remedial treatments like dialysis, or bone operations?
Very best wishes,
Peter
Hi Helen, Peter and all
Like many of you, I have not looked at the forum for a while. That said, the recent Myeloma UK Impact report says that 89,555 hits are recorded each year on the Forum site. That’s 245 each day! So it seems that lots of people are loooking but not contributing since the last posts on several topics are weeks or months old.
The Times last week had an interesting feature on cancer research and noted that the UK spend last year on myeloma research was £6.8 million per year compared to leukemia at £35million per year, yet the number of deaths per annum is roughly the same. It also said that this year’s Nobel prize for medicine was awarded for the discovery of checkpoint inhibitors and CAR-T cell therapy. Hopefully this is the future for myeloma patients? I think there are 3 centres in the UK offering this.
It will be interesting to see if any of these points are raised at the Manchester Patient Infoday next weekend. I will be there so come and say hello!
As for me, diagnosed 2013 and 5 years now post stem cell transplant and doing well. Not on any medication but pps slowly rising, now about 7.
Hope this helps
David
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 again Helen,
Thank you for your prompt return post – and this is the second time I’ve tried to reply this morning – it all went wrong when I tried to include a NICE link to this post concerning polidomide. Hope you don’t mind me attaching the link…
https://www.nice.org.uk/guidance/ta427/chapter/4-Committee-discussion
Not sure if it works (the link), but if it does and maybe you get time to read it – it might help with your Consultant. If it doesn’t work Helen, search under NICE polidomide in google.
Very best wishes,
Peter
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