Kazza you have posted correctly
I’m pretty new to this forum my other half was diagnosed in March we have just started the beginning of the stem cell harvest – and its not good so far and we don’t know if he will have the SCT at the end of it all either (trial randomisation either the SCT or another 4 cycles) before he then starts his 18 months maintenance. I don’t know what options there are to be honest, I heard of one patient who was or is just on a continuous maintenance program not sure how long that is going to go on for or if its some kind of trial.
But i have heard chances or longer life are far better if you have the transplant. And while you can get scared by reading all the side effects and risks, not everyone is the same some people do suffer and some people can walk it through with no major issues. The loss of control is probably the worst thing through all of this.
Hi,
Just sitting at home now trying to focus on work and I have my other half in bed – he just had the priming session on Monday for the ST Harvest and today he is physically sick, just gave him his tablets again (after the first lot didn’t stay down), I honestly thought he would have been better today but the nausea and vomiting is getting worse – he is keeping a good temperature but with little / no fluids i’m not sure how long that will last.
But as an FYI – His pp levels were as follows – Start 38 / after cycle 1 – 10 / after cycle 2 – 6 / after cycle 3 – 4 / after cycle 4 – 3. I would have liked it to have gone down to 0 but i guess that is wishful thinking, his light chains were at 290 at the start then after cycle 1 it was down to 11 and then they said they stopped counting as they were back to normal. I did ask the nurse about his pp level she said it was a very good level to be on but i have no gauge as to what the perimeters are for harvests or transplants.
i’m hoping that we can get through the next 2 weeks with no A&E visits but this is looking very unlikely – I just hope he picks up later today and can keep some food and liquids down. If he does go down the STC route (still to be decided as he is on a trial) then i’m glad he will be in hospital and monitored 24/7 he is very stubborn an wont listen especially when he is sick and wants to be left alone.
The only annoying thing is everyone is different and reacts different – my boy is 39 and albeit the myeloma was very fit and healthy, but now suffers terribly from nausea and sickness on the chemo, so when you see people walking in and out with no issues from the chemo and people are more older and fragile looking on the whole I get upset that this is happening to him. but he’s never been one for taking drugs of any kind and i guess its hitting him 10 fold which i suppose is a good thing cause its working and he does turn a corner instantly from sick to okay, i just don’t know how long that will be as every treatment is different and side effects are all very random. He does change as a person when he is having treatment but goes back to his usual self when he has the rest-bites so I know its not forever.
Hi Annette
I am sorry to ear about the Leukaemia – I noted that a lot of the chemo treatment can cause secondary cancers – its a head-full to take in when it comes to treatments, my other half would rather just not have any of it and when hes not on meds ( month off) he is so much more better)
We are back now and did take out the additional insurance before we went £125 for for 4 days but peace of mind is a better thing to have.
Hi Annkhoward,
It would be good to hear how things go for you, I think i am almost definitely going put him on Curcumin (did notice H&B sell the supplements) once his treatment has finished, we still have a long way to go but he is on his months break from the trial and its amazing how much he’s changed only being on one tablet as opposed to several different kinds he’s almost 85% back to normal I am dreading having to go down the route of taking the medication again once the stem cell harvest takes place and the 18 months of maintenance
Has anyone taken Curcumin while on chemo does it help or just add to the mix and make you more nauseous ?
Cycle 3 results only went from 6 down to 4 :/
slightly gutted but still have cycle 4’s results to go and theoretically either a STC or another 4 cycles then followed by 18 months maintenance of chemo once a week – I think we will reach our goal of 0 at some point.
Hi, We were pre-warned that there could be an initial big drop, if anything I was more relieved to know that the chemo was working. Tomorrow we find out what the results were from cycle 3 and he does his bloods for the end of cycle 4 so i’m guessing if I bug someone they can tell us by next week when the results are back what his levels are.
As he’s on a trial he is going to be randomized he either has the SCT or he has another 4 cycles of chemo twice a week, but again while its working it is also causing him to get sick more and more each week after his sessions, they are worried that he wont be able to do his maintenance of 18 months chemo once a week, the sickness and nausea side effects are getting worse each week, it passes but hes ended up in A&E twice now and only gets two good days a week before we start all over again. Right now he’s just about to have a month off, before all the testing and Stem Cell harvest begins so hoping we can go away for a week or so.
Hi,
I’m contemplating on putting my other on Curcumin suppliments, but not sure he will take it, its a mission as is based on the amount of drugs he is already on. His levels started at 38, after the first cycle it went down to 10, second cycle 6, we get the third cycle results on Wednesday and hopefully by the end of next week someone will tell us what the 4th cycle results are. They stopped counting his light chain levels after the first cycle (started at 290 then went down to 11) as they said they were now at normal levels.
But i would like to hear more about Curcumin and if people really do think it helps – I actually have it written on a post it note at work and stare at it every day wondering if i should purchase it or not (he really is stubborn when it comes to taking his meds) so wonder if I should pursue it or not. It would be good to hear if anyone else is taking it or not as I first came a cross it on this forum a few months back.
Hi,
From what I have learned over the passing months, finns comment is right a pp level of 6 is low and usually no treatment (chemo) is given or suggested until its above 10 or 15. I met an elderly lady who had levels of 6 for around 8 years before it went up to 17 and then she started having a few troubles but for those 8 years nothing was done she was just monitored. Until you have your biopsy I guess it could swing both ways MGUS / MM I do hope for what its worth that you get good news from your test results, the waiting and not knowing is the worst part of it all but sadly its something that everyone has to go through, but there is a lot of help and support out there, I am not a sufferer of MM but my other half is and I look over the forum nearly every day just to read up on things or ask questions as and when something happens that i am worried or unsure about. Its also good to hear of people progressing and give you a lot of hope. Just remember times are changing but for such a rare cancer a lot of progress is being made.
He is now on his last chemo session today before he gets a month off, I wasn’t with him yesterday but the trial lead dr saw him – said that he has seen i happen before and it will only get worse (the effects of the chemo) and that he is worried how the 18 months of maintenance would work.
They reduced his chemo by around 30% but to be honest it didn’t make the slightest of difference to him, by the time we got home it was already hitting him just glad its the last session today and we get a month off for the most part.
thanks for the advise everyone – its good to know as for the most part you get a sense that you do anything wrong and you will be kicked off the trial knowing that its working.
Sab’s
Hi Finn,
That made for a very interesting read, they mentioned since the second cycle that the Carfilzomib dosage that my other half is having is a VERY high dosage and maybe they should consider reducing it, (in addition to it having a god awful effect when taking the Zometa as well), but they never reduced it or never mentioned anything about just trying it for one day a week as opposed to having it twice. quite shocked at this now and wonder what on earth is going through their heads knowing and seeing what it is doing to his kidneys, i am now wondering what it is that they are specifically trying to get out of the trial (a few chosen words will be had with the Dr’s come the next monthly appointment).
I also copied your response over to my dearest who will be having words with them tomorrow when he is in – I will go to pick him up after work, but they obviously want to see him before he has his chemo based on the past weeks event, I really do sense that they are focusing on the wrong thing and ignoring some of the more basic care procedures.
Thank you
Hi,
apologies if there is any confusion its my other half not me that is suffering. I am not sure what the medical team are thinking they get more worried about his kidneys than what is actually causing the sever nausea stomach cramps and vomiting to start off with.
he is on the trial Carfilzomib trial and has chemo twice a week but once a month now he has to miss a session – they once gave him an IV of anti nausea meds after his first visit to A&E but nothing since, he is on Lorazepam / Omeprazole / Domperidone / Ondansetron – none of it works I have so many boxes of all of them just nothing works, he is responding very well to the Carfilzomib itself (in the first two cycles his pp levels went from 38 down to 6) but even on his weeks off when he just takes the steroids it knocks him for six and the following day he is out for the count and cannot eat or drink, the metallic taste is there and i think 5% of it is psychological but when you have to pick him up off the floor in the A&E car-park while vomiting its a bit too much for anyone to have to deal with on either end.
I just don’t get it, at the UCLH 95%+ of the people don’t look sick, forgive me for sounding so blase about it but its like a walk-in social club people coming and going having chats over tea and eating lunches and snacks just popping in and out with no reactions to the chemo what so ever – which is actually VERY good and shows the progress on how medication has evolved over the years, but my other half just looks and sounds like a very stereotypical impression of someone portrayed in the movies with cancer , sick all the time, losing weight cant get out of bed for a few days after. He bounces back but only getting (if hes lucky) 2 good days out of the week which just doesn’t seem good enough, he’s only 39 and up until March this year he was the fittest and most healthiest person I knew. He always hated taking drugs even for a headache and everything just seems to be more potent – no other side effects just the sickness :/
Ill see if the milk with the steroids works that’s something we have yet to try and 3l a day of fluid is difficult im lucky if i get 1.5
thanks for the advice
Sab’s
Hi,
Usually its around 2 or 3 weeks once all the tests are done before treatment starts. We had to wait 3 weeks but in that time it involved going to 8 different hospitals and seeing multiple consultants. This however i think this was a little excessive for the most part, but I would say two weeks is the average, there are so many things that they need to gauge and test for that it can seem very time consuming when you just want the treatment to start or something to be done straight away.
For us we are now 4 months in since diagnosis and treatment we are only technically 1 quarter of the way in (on a 2.5 year trial) which i believe for standard treatments its around 8 or 9 months from start to finish.
There will always be 101 questions but try and take it one step at a time and things will slowly but surely slot into place. This is a good forum and people are very helpful, I have a read of it every day and just check for updates and see how people are doing even if I don’t connect directly with them. But I hope your mum gets some answers soon and you can start treatment shortly.
Sab’s
Thanks for that – ill have a read over the weekend
I hope that it doesn’t cause much sickness / nausea which seems to be our biggest problem with pretty much everything – week off from cycle 3 and yesterday the steroids had messed him up again (not realizing if it was the chemo drugs or iv) every week is different but ultimately each week there is some really bad sickness symptom to contend with 🙁
I hope we can see the light soon
Thank you, I think I may have seen one of these processes done to someone else (if they don’t keep you in a separate room) was thinking someone was having a blood transfusion and wondering what was going on – the person in question was hooked up for hours and ended up falling a sleep half way through it.
But thanks again i was thinking it was some thing god awful like a biopsy but for longer and them drilling into your bone marrow and trying to extract it from there and lines coming in and out of the chest when its going back it (actually i have no idea what i was thinking) – I just want to be prepared for if and when it happens – I find that I retain more information than my other half when it comes to processes and procedures and being the one who keeps a level head in front of him (while flaking out in the back ground where he cant see)
Thanks – but I’m still a little confused as to how its physically done, How do they harvest the cells and how do they put them back in ? I’ve tried but not that hard to look it up online but i cant see how its physically done
is it painful ? The biopsy is a horrible thing to have done and i was the one in tears just watching it while my other half remained silent and motionless while the dr was literally drilling into him way way to heavy handed.
even at the UCLH nice as he is one of the coordinators isn’t that helpful when it comes to explaining things (in all fairness we never asked the clinical doctor because we were just starting chemo but now we are getting close to what may / may not happen).
