Hi,

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]

Just out of interest does this also affect your sense of taste ?

Hi,

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]

Hi Emma,

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]

Hi Bob,

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]

Thank you Maggie, I guess I’m going to be feeling like this for quite some time, the next phase is another 4 months and then 18 months of maintenance after, so we are in it for the long haul, I just can’t wait for the day that hes not on treatment and in remission, but I suppose that nagging voice of when will it come back will then remain in my…[Read more]

We try to keep everything as normal as possible – he was advised not to ride his motorbike – not because he cant but because if he comes off it then he can cause damage to his already fragile back – but the way we see it is if he comes off his bike hes buggered any ways! So while the weather is okay hes back on his bike before treatment starts…[Read more]

Jeez – over a year since you were diagnosed to getting the SCT, that is a long time. The one thing I wonder for myself and my other is will there ever be a day where you wake up and go to be with out it being the first and last thing on your mind of a day. Its both a blessing and a curse that everyone is different you can’t ever get a straight answer.

Hi Adrian,

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]

Literally just heard he is going on another 4 cycles and not having the SCT – But he is now going back to Stanmore ASAP as during the SC priming session he had sever back pain they had to do a MRI as it was located in the one area, they have noticed another lesion on his T-12 (i hope this is not new – can you still get lesions if the treatment is…[Read more]

Thanks Adrian,

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]

Hi,

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]

Hi,

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.

Hi Claire,

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]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.