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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Mike / Steve,

My other half is being seen by Sean Molloy, he is meant to be one of the best, we had to get a fitted body brace as well but for one imminent collapsing vertebrae (doesn’t go up to his neck just above the chest and to the shoulders) – going back on the 26th this month to be re-assessed after 12 weeks of having the brace.

Apparently…[Read more]

Hi,

my partner is newly diagnosed a few months back, he is on the Carfizomb Trial, all i know is that pending on where you are being treated there are are usually a handful of trials taking place, at the UCLH they are do two different trials for newly diagnosed and one for relapsed. I don’t know what makes someone a candidate but have heard of…[Read more]

That is correct, that’s the trial he is on, but from what i can gather at least at the UCLH there are 10 different trials going on. Usually they sign you up to them straight away but I have heard of a few people asking to be put on certain trials.

Hi Brian,

I believe the only time when you are offered maintenance on the NHS is when you are part of some trial, my significant other is on a trial only cycle two but will either have a sct after the 4th cycle or go onto have a further 4 cycles (randomized as to what group he goes into) and then have 18 months of maintenance. If he was on…[Read more]

That’s reassuring to know annmarie thank you, my other half wont rest up so we have a problem them however he has been told that from next week he will have a monthly IV treatment to help strengthen his bones so fingers crossed.

Hi Emmaj,

I can’t pretend to know what you are going through and I’m afraid I don’t have any answers I have been asking the same questions, my finance is 39 and had back complains for months before anything was done. He has a pending collapse of a vertebra and is walking around currently in a fixed molded body brace, two thirds of one of his main…[Read more]

Thank you annmarie, your husbands situation is sounding very similar to ours, he had back pain for 7 months even though A&E and the drs found abnormalities in his blood and urine samples but nothing was ever done for 7 months it wasn’t until they finally referred him to physio that they did an MRI scan and found his L4 (i believe it was) to be on…[Read more]