Just an FYI – My other half started getting really bad headaches for 48 hours at a time for the two days following his treatment (Carfizomib) but we knew this was down to the steroids (<span style=”color: #000000; font-family: arial, sans, sans-serif; font-size: 13px; white-space: pre-wrap;”>Dexamethasone) </span>as it makes him sick even o…[Read more]

My fiance is was diagnosed Mar this year he is going to be 40 this week, I agree 100% with Graham and what he said. Go with your mum whenever you can, make lists of questions as and when they come up, even though my other half looks things up on MM, when at the appointments he doesn’t necessarily register what is going on and albeit some…[Read more]

As you can see you are not alone. My other half was diagnosed in March this year and he is 39, but we knew something was very wrong with him before his 39th birthday when he was the same age as you, unfortunately he was ignored for several months by his GP, you are both in an elite club of being under 40. (he has his 40th bday this month…[Read more]

Similar kind of issue with my other half, collapsed vertebrae – took a few weeks to be seen at the RNOH was put in a body cast brace for 3 months (as there was some bone growth which was just about pinning the vertebrae up) , after 3 months told that one third of the bone had healed but he would have a back as strong as that of a very…[Read more]

I think we are okay, though we will find out on Wed at our next appointment, i’m guessing its a case of having the co-ordinator not knowing what she is on about and getting lost in translation. I got home Friday and noticed in one of the old letters sitting on the side said that the T-12 bone had the big lesion – this was the bone she…[Read more]

So usually is it the day after you have the Chemo that they put the stem cells back in ? I know you said it was the weekend but im not sure what is the norm. We were told that it takes 11 days for the immune system to go back to normal but im not sure what happens in the first week. My other half is 39 he will have his 40th the…[Read more]

Any feedback on the process would be greatly appreciated – we find out between now and Wed (18th) if my other half is having his SCT or not but he is provisionally all booked in for the 23rd Oct. I don’t know what would be better the SCT or another 4 months of chemo twice a week (randomized on a trial).

I’m a little put out by the 10-15%…[Read more]

No fixed date yet as we don’t know if he is even going to be having his Stem Cell Transplant. He will be randomised hopefully in 2 weeks time and then whichever course he goes the SCT or another 4 cycles of chemo (either way his stem cells will be put in the freezer for safe keeping). but if he does have the stc it will probably be 6 weeks from now.

That is really good news to hear (pp at 2) slightly envious now as we only got to 3 :/

My other half had his Stem Cell Harvest yesterday the past 10 days I wont lie haven’t been that great, the initial chemo made him very sick, I was on the verge of taking him to A&E when his temperature rose to 37.4 (0.1 and he would have been in)…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Has anyone had any dealings with regards to coverage using the EHIC card. Going on a 4 day trip to France to get away while we have a short break in between treatments and while my other half is off most of his meds and feeling a little more human than normal. For someone who is relatively newly diagnosed and just finished his 4 cycles of…[Read more]

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…[Read more]

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.

As…[Read more]

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]

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]

They reduced his chemo by around 30% but to be honest it…[Read more]

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]

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]

We ended up in A&E for the second time in the initial 4 cycles with stomach cramps, vomiting and nausea caused by the start of an infection and then the days that followed kidney problems due to dehydration.

My question is has anyone else suffered from constant nausea and severe stomach issues from the chemo and other drugs (i think that the…[Read more]

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]

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]

But thanks again i was thinking it was…[Read more]

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]

Can someone please be so kind as to advise on what happens with regards to the sct from harvesting to putting back in – I have no idea what the process is or whats involved or how it works.

We have one more cycle to go through then the harvest (no idea how this is done or how long it takes) have a little break before they flip a coin and he…[Read more]

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]

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]

I wanted to know if anyone has had any issues with the following, albeit i am going to be slightly vague here:

My other half has just finished his cycle two and is now on a week off however had to skip his last chemo session (twice a week) because of some severe side effects:

Two weeks ago they put him on the bone strengthening drug…[Read more]

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]

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]

My other half is not big on pills so currently isn’t taking any medication for his back, but feels that something is wrong (though refusing to go to A&E) The situation we are in is that he is being treated by two different hospitals, one for the MM and one for the back, the back specialist is meant to be one of the…[Read more]

But I’m now worried that we are basically being told that’s that, live with the pain – he was diagnosed with something called hyper-movement he’s more flexible than most ppl which i guess is one of the reasons his back hasn’t caved in just yet, and why the restraints of the brace are hurting him so much, but if this is it at 39 and…[Read more]

He is currently in a brace and praying that in time it will heal (though i am unsure how because two thirds of his bone density has been…[Read more]

My significant other is on a Carfilzomib trial (…[Read more]

Sab’s x

He is being treated at the UCLH (Guess we couldn’t ask for a better place) while they have 10+ trials going on his in on the Cardamon Trial (Carfilomib) – Chemo Twice a week (IV line – Wed & Thu) third week today. It consists of 4 monthly cycles  3 weeks chemo / 1 week off after the 4th cycle i believe he gets a month off and they…[Read more]