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My husband after lots of thinking went on to lenolidimide last month instead of dt-pace…….. After 3 days in he became poorly and ended up in hosp with pneomnia and spent 12 days beng given: blood,platlets antibiotics etc !!
we think this was just bad luck not due to new med, however now hes home mobility poor, he seems weaker yet we saw specialist thurs who said pp when admitted went to 40 however even on reduced dose 15 lenolidimide its come down to 26 first cycle!!!!!
BUT specialist is concerned that the lenildimide wont work fast enough and myeloma will take over as his is showing to be aggresive.
the descision he has to make is if to switch or not??? From our perspective this seems to be the first bit of positive news numbers comng down so why stop yet??? He feels thats one of his goes gone again!! He said he doesnt feel strong enough mentally or physically to go through dt pace and spend 4 weeks in hospital! And then go sct it seems too invasive all too much???
we just want some views from others: we dont want to seem irresponsible and make a rash descision…… But monday is descision day???? Specialist hasnt told us which way to go but has expressed concern that myeloma is aggresive and needs stopping in its tracks, we jst feel they dont seem to give drugs much of a chance and whilst pp are moving down surely thats a good sign its working???
Hi, god what anawful decision to have to make – I think I would have asked 2 consultants for their point of view and go with their experience but then when I was wanting to go to SCT I had a hospital not wanting to risk my kidneys and one who were prepared to! and I felt grateful for that!? When I look back I was the one taking the risks but I always felt a “third” person in it all just throwing the chips on the table. Whatever you do is a gamble but which one will give you the long term odds? I totally understand how your husband feels re strength and that is a big factor to consider I think. I went into SCT very mentally strong, went thru chemo beforehand fine, but 4 weeks after SCT with constant nausea and some infection/chest set back I was mentally “broke” and my husband thought I’d “given up” n quite frankly I don’t know if I had, I was in such a state of horrible, continuous limbo of illness that it drained me of everything – and I had gone it with a hop, skip and a jump – so don’t know how it can get if you go into it already on your knees. If you mentally give in does it really impact you that much physically? can it be the actual deal breaker to life v death? I don’t know? Equally, your husband is in a pretty rough place right now so will SCT be any harder for him (tho obviously longer)? This is all so individual as to how each off us reacts to SCT – if you sail through – or if you get problem after problem. Obviously you do not sound as tho you have been given the choice to stay on lenolidimide for a while in the hope he recoups his strength sufficiently – mentally/physically to then decide on the path to take. I would have thought DT-pace could still be as effective after this treatment follows? or are they saying if it is allowed to take hold it may be too late to knock it back sufficiently for SCT? I think you have cells on ice waiting. My head would say trust your consultants and go dowm the route they believe is best but…it is our lives we risk….and now my heart says carefully consider your intuition and how you both really feel about it all – trying to take the fear out of the equation also. I recovered quickly from SCT and am back to full “life” 10 months on and I have always said I would do SCT again in heartbeat – the process was horrible but for a few weeks only – not much in the great scheme of things. I was totally 100% adamant I would rather die trying than not have an SCT- I gambled a lot on Hope – and I survived and am living life as normal. But, I am now quietly considering at the back of my mind if I would actually do it again or did I use all my luck up last time? Now I have had the time to contemplate, whilst in remission and no “rush” to survive, I hope when the time comes I listen to “me” and my gut feeling – as we are the guinea pigs in all this. My “gut” told me to go for it 100% last time, totally against my husbands wishes I might add but that was irrelevant to me as my path was set, and it was the right decision that time. I am not fearful at all of SCT but feel my instincts may have changed moreso with a second and I want to listen to my intuition next time.Sorry, I have rambled yet again as I am considering your plight but either way you both have to live with your decision so I guess I’d try and put the fear factor to one side and do a list of for/against but make sure your consultant can give you supporting evidence for the questions that need answering. Your husband will be so weak physically at this moment in time it’s a question of how much more actual risk you will be taking by doing the harder route now. I know you are all too aware of the risk/damage of infections on the body so listen carefully to your “gut” and gather some answers to the impact on an already weak body and a dented mental strength – they’ve been around it long enough to offer opinions. Good luck
Rebecca
Sorry to ask what may seem to be be a silly question, at what is such a difficult time for you, but Dt-pace is yet another abbreviation I’m unfamiliar with, can you tell me what it is please. Jeff
Hi Maijic 30
Reading your husbands history,he has had thalidomide ,then Velcade then pomilidomyde has had his STem cells harvested,then Polidimide and because he has an agressive Cancer they are recommending he has DT pace,and in between this he has had pneumonia!!!!! Plus he has had compression on his spine,hence radiotherapy.
He has age on his side!!!!! After all those treatments and side effects it’s no wonder he feels he does not have the strength to do it???
I must tell you it must be his decision ,as if anything did go wrong as a carer you would find it hard to live with,but you have to tell him all the things he has to live for,you any children,parents ,possibility of the rewards,years free of treatment!!!!
Against that the consultant has spelt it out for you both,the myeloma will take over!!! Consultant must feel this is the only way forward,but it is his decision.
I don’t envy you both this weekend!!!!
You can say no!! And take a chance with Polidimide and have a small quality of life at home.
You can say yes!! 4 weeks in hospital a chance of hit it hard,many do not get that opitunity because of age,so the risk is greater,there the people who would have done anything to stay alive.
It will take a lot of courage either way your husband chooses,my husband was high risk Myeloma,as soon as treatment stopped,it came back again,he had a SCT against his consultants advice,written off at Christmas,changed hospitals,had old treatment Velcade second generation,died end of August complications of chemo,loved him to bits,would not have done anything different,nursed him myself until the end,
Hi Jeff, For info dt-pace is a combination of chemo drugs typically about 5 – so you can see it is more or less throwing the kitchen sink at the M – hitting it like a sledgehammer but quite a harsh routine (understatement here) and you are hospitalised throughout the cycle I believe, for obvious reasons. Not sure, but think it’s only used on younger people who are thought to be able to take this regime – and for “aggressive” M where other treatments do not seem able to keep it at bay for any length of time. Usually used immediately before SCT perhaps 2 – 3 cycles on average. Not sure the combination of chemo but you can pretty much guess some of them by the lettering – D – dex T – thalidomide C – cyclo…I assume.
Rebecca
Thanks Rebecca, dt-pace sounds pretty heavy. Although I am too old at 76 for SCT and decided at 75 not to go for SCT although I was fit enough to be offered it at 75, partly because I realised it was a lot to take on without a carer to support me through the programme, I still like to have an understanding of as much as I can about MM and it’s treatment. This was a new one for me. At the moment I am on my sixth course of Lenolidomide, which is proving very effective in reducing my p/ps, with little side effects. Thanks again, and best wishes, Jeff
Hi Jeffery, long may your results continue. To be honest I do not think SCT is the be all and all now – as perhaps it was a few years ago – when drug options were much more limited, and you needed to take the plunge, but nowadays you can debate either way as there are new drugs coming up which are much more kinder to the body. At 52 I felt I needed the option to span things out as much as possible and, for me, recovery to full health and fitness was good. SCt is still classed as the “gold standard” but I think many years down the line it will be considered quite crude. I was told by my Dr that years ago cancer patients were given the same high dose chemo (wiping their immune system out) but no stem cells were returned, like now, and they all tended to die of subsequent infections as they had no immune system! now that seems brutal to me and I think it was only 30 yrs ago (can’t remember for sure). I wouldn’t want my mum or dad to go through a SCT at 75+ with the new drugs on offer nowadays as I would feel their recovery time would be so much longer and that perhaps the quality of life would have irretrievable suffered in the process – but then my parents are not fit and robust to start with. Good luck with it all
Rebecca
Hi Magic, just thinking about you and thought I would just post some quotes to consider (I like motivational quotes and they inspired me a lot when in treatment)
“Life shrinks or expands in proportion to ones courage”
Winston Churchill “If you’re going through hell ..keep going”
“The moment you’re ready to quit is usually the moment right before a miracle happens. Don’t give up”. (Well I know none of us believe in miracles now but I guess there are lifelines)
and always remembering “Hope isn’t a strategy but its one hell of a motivator” and that “hope is independent of the apparatus of logic”
Good luck tomorrow I hope you get the answers you need,
Rebecca
Thank you everyone, he still doesnt know what to do, like you say it must be his decision, we have devised a list of questions to be answered……. Maybe that may help,, we have hosp apt for platlets tm and see specialist after. I personally feel the whole hospital experience has left hubby with little strength. Maybe if we could bide a few more weeks recuperation things could be different, that said we also dont want to play devils advocarte !!! We need honesty and direction …… Lets hope tomorrow brings answers and points us in the right direction xxx
Andy went through CTD, velcade and DTPACE pace but didn’t get remission. He went onto revlimid for 2 and a half years and now on polimoid. Look at his posts.
My hubbys consultant would not put anyone through SCT who are not fit. Think carefully about treatment.
Good luck x
Hi Maj
Thinking of you today. Do hope you have a helpful hospital visit. I believe your husband is young. I guess that’s why they are suggesting SCT. However it is his decision.
Hope your husband was brave and challenged the Consultant, and asked all the questions he wanted to. I always write mine down before I go, else I forget something.
The trouble and the good news about MM is that new treatments and treatment regimes are coming along so fast.
Do let us know how things went.
Rooting for you both.
Mavis
Hi Majic30
I just wanted to post because I have experienced DT-PACE (and Stem cell transplant which came after). I should stress I am an unsual myeloma case (and if you’re a regular at the Royal Marsden Myeloma Clinic I’m the very obvious outlier in the clinic as I look (and probably am) about 30 years younger than everyone else) so my experiences might not be directly transferable to your husband.
DT-PACE was my first ever treatment and I had two cycles, July and August 2013. It is a combination of 6 drugs (D=dexomethosone, T=thalidomide, P=Cisplatin, A=Doxorubicin, C=Cyclophosphimide,E=Etoposide). The first two drugs are taken as pills, the other four drugs are taken continuously over 96 hours (without a break) through a line (so IV delivered). So you are sleeping, walking, eating, showering, whilst connected to the drugs – for a full 96 hours. This is the bit to get your head around. You will also take aciclovir, flucanconile, anti-sickness drugs, another drug for your stomach lining (which I’ve since forgotten), but I was taking something like 26 pills every morning for those 4 days I was on DT-PACE.
In terms of tolerating the drugs. It’s important to know that I was only 33 when I was given DT-PACE. So I tolerated it quite well. There was only one day on each cycle that I was physically sick, and apart from some mild fatigue during the process and immediately after it, I was fine. Because I was young, my bone marrow function is still good, and hence my neutrophills bounced back very quickly so I didn’t have to come back into hospital once I had finished the 4 days. However, I think I was allowed home as I live close to the hospital I was treated. If you live some distance from the hospital you may have to stay in the whole time (4 days for treatment, plus additional time for body recovery). Whilst I was an impatient at the Marsden, another chap, 20 years my senior, was undergoing DT-PACE and he live 2.5 hour drive from hospital so he stayed in for nearly 3 weeks. He didn’t tolerate the drugs so well. But then everyone is different. But be ready to lose all your hair.
Was DT-PACE successful for me? Well I was told it was by my consultant. It halved my PP count, but regardless of the outcome I was always going on to SCT as that was the only thing that was going to save me due to my unusual presentation. It did start me on the road to full remission, but that did take me 16 months to get to that point!
Good luck for the future which ever decision you take.
Hi Majic.
As Maureen says I’ve been through most treatments with not much success. I only had one dose of DTPace with 4 nights in hospital. I only had one cycle as it was deemed not to have worked which was the same as every other treatment I’d tried up till then. Even trying for an Allo SCT wasn’t possible due to no match being found.
The experts got their heads together and it was decided to try me on Revilimid (Lenalidomide), not widely used at the time, nothing seemed to be working for the first 3 or 4 cycles so they added Cyclophosamide to the Rev. and Dex. RCD which managed to get my PPs down to just under 12 and kept me stable for 2 years. I’m now on pomalidomide hoping to get a good while before it fails.
Good luck with whatever you decide.
Every day is a gift
Andy xx
Hi all,
Hubby has discussed options with specialist- and agreed to stay on lenolidimide for 2wks then hv pp checked mid cycle! The dose is only at 15 not 25 so hopefully even with a reduced dose it will still have an effect.
if this doesnt go his way then he will unfortunatly have to go through dt-pace.
He hasnt had very good hospital experiences to be honest and this has a lot to do with his decision makings. Theres just too many drs that come and go giving different advice etc that it leaves us not knowing what is going on.
he had a call last thurs to say he was needed in overnight as phosphate levels were too low?( was told to be in within 2hrs that a bed was waiting) he got to a and e no record!!! Waited 5hrs before treatment was started!!!
he was started on zometa on the monday could this of triggered something?
all weekend hes complained of pain/discomfort in his hips!
he has adcal to take on top of all this plus gcsf twice week……. He feels constantly bloated. Does anyone else experience these same symtoms?
Hi,
my husband passed away last week. I was at his side, this happened so quick. His myelma was aggresive and we couldnt seem to gain control of it.. I wish each and everyone on this journey hope and strength. I will contnue to support myeloma and hope one day a cure can be found xxxxx
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