[DizzylizParticipant]

Hi everybody, not posted for a while but have tried to keep up to date with the forum, we found out yesterday after being called in to see the prof:
That kev has relapsed a year on from sct, a huge blow but he knew something wasn't right for a few weeks not feeling well and his gp picked it up from a routine bloods which I emailed the myeloma nurse with who got kev seen ASAP, he starts on velcade+dex today. Kevs very quiet and I've gone into carer mode and in a daze and trying to read up on velcade . We are trying to get our heads round this and so grateful to the staff at hospital in the swift action to get kev started on his treatment.

Love liz xx

[KeithH17Participant]

Hi Liz sorry to hear of Kev's relapse.
I had a similar experience late 2010 when I relapsed after 2yrs 4,months.
I had been feeling unwell for a month prior and was in a lot of pain so knew something was amiss.
I was put onto Velcade/Dex after having a bmb which confirmed the relapse which put me into remission and my 2nd sct last August.
I had another biopsy last week as my PP's have doubled to 10.98 and the consultant wants to check that the MM isn't on the move again.
I found Velcade ok with very little side effects so I hope Kev is just as lucky and gets into remission quickly.

Best wishes to you both…Keith.

[PerkymiteParticipant]

Sorry to hear your news Liz, the very best of luck to Kev in his treatment which I am sure will contain it.

Kindest regards – Vasbyte

David

[tomParticipant]

Hi Liz and Kev

Well am sorry to read about Kev's results, I hope and am sure they will soon sort it out and Kev is back to strenth, am sure you will but I have to say it so "Stay strong" and Fit hope its a short blip in the road of MM

Love
Tom "Onwards and Upwards" xx

[MariParticipant]

Dear Kev and Liz,

So sorry to hear your news. We had similar news in November when Steve relapsed after 13 months. He started velcade and dex in December, and he has just finished his 6th cycle. His paraprotiens were below 2 after the 5th. Steve was quite poorly in January/February with lots of coughs and colds but he feels very well now. He managed the chemo fairly well and was even able to work three days a week. He found the tiredness and exhaustion crept up on him as he went through the cycles and he finds that dex causes him terrible bloating but this is subsiding now and he is even losing some weight. The best thing is that this treatment has worked very well and he is looking forward to summer. I do hope that you and Kev can also have a positive experience with the treaatment, and he is soon feeling well again and he can get through the treatment without too many nasty side effects. Steve is now preparing for a second transplant which is likely to take place in late summer.
I hope all goes well for you,

Love Mari x

[DizzylizParticipant]

Hello Keith, David, Tom, & Mari,
Thankyou all for your kind words as always, we didn't get back from clinic till 6.oclock missing all this lovely sunshine but hey there's tomorrow! They said that the myeloma is presenting in a different way this time round Kappa light chains where as before it was the lot! The reason they've acted quickly is he's quite badly aneamic and kidneys going into failure which he did have before, at the moment he's fast asleep which I'm glad because and I know from last year sitting around in clinic is tireing in itself.

There's just one thing I was wondering kev has a second lot of stem cells but the prof hasn't mentioned weather it's an option?
But that they are still waiting for the results of his light chains (the measure of )

Again Thankyou one and all love liz & kev xx

[mhnevillParticipant]

Dear Liz and Kev

So sorry to hear your news, but at least the quick resonse should bring good results from the velcade and dex. I do hope there aren't many side effects and that you are able to have a good summer.

Very best wishes.

Mavis x

[DizzylizParticipant]

Hello Mavis, Thankyou for your kind words, I've not posted for a while, when kev went into remission we tried to get some sort of normality back, just after his sct last April he lost his mum and I took I'll so I vowed to get better and both enjoy every single day, even went on holiday to Spain last month, which is where he started feeling unwell.
Kevs in his beloved garden this morning pottering around and me watching him like a hawk!

It's been lovely reading everyone's replies

Love liz xx

[DaiCroParticipant]

Hi Liz & Kev,

My consultant thought I might get between 3 to 5 years from my SCT based on an excellent response to my frontline treatment but I relapsed after 10 months… so I can both sympathise and empathise with Kev… it knocked us both back and like Kev I had a quiet period of 2 to 3 weeks until my survival mode kicked in and I readied myself for the next treatment.

My advice is to allow him a few weeks of disappointment but then he will need to face the next step… there are 2 or 3 new treatments coming online in the next couple of years and Kev just needs to be there to find the best of those treatments that suits him. Carfilzomib works in conjunction with Revlimid and everyone seems quite bullish about it based on the trial results so far… the manufacturing company is looking for the USA licence in July and we should follow within the next year or 18 months.

I mention these drugs because it shows that there are a plethora of new treatments coming to us soon, with others in the pipeline. The SCT is the UK's big hitter at the moment but Revlimid has a median of 30 months for those that take to it… of course there are no guarantees but 30 months (and getting better as new resukts come in) is 2.5 years… almost good SCT figures, so there is hope for all of us… and Kev has Velcade to come first before Revlimid… so he should be handy for Carfolzomib and the other new drug regimes.

Janet watches me like a hawk… I was about to go into the garden now that it has cooled down (8.15pm) but she just laughed at me… there is no way she will let me loose with a pair of secatuers without her standing behind me and she has no intention of coming into the garden at 8.15pm. Ah well… 😀

Regards

Dai.

[DizzylizParticipant]

Hello Dai, Thankyou for your post last night as always I love reading your posts and I do relay them to kev.
I have just read this morning posting which makes interesting reading, kevs steroids have kicked in so wide awake at 3 o'clock this morning so now trying to catch up and get ready for velcade injection tomorrow, I thinks he's glad it's a subcue: and not intravenous.

Where's the sun gone? Oh! Forgot its coming upto bank holiday weekend hope its a good one for you both

Love liz&kev xx

[michelleakitt29Participant]

Hi Liz

I am so sorry to hear that Kev has relapsed, I hope all goes well with velcade.

Much love Michelle x x

[shirleyParticipant]

Hi Liz,very sorry to hear of Micheals relapse,glad they managed to treat him so quickly too. Lets hope its not to long before he's back on that road to recovery once the new meds kick in,both stay strong and take care Shirls x x

[shirleyParticipant]

Liz i'm so sorry.i called your husband Micheal and not Kev,i do apologise,so very sorry,Shirls 🙂 🙂

[DaiCroParticipant]

Hi Liz,

How did Kev get on with his Velcade injection?

Although the actual infusion only took five seconds we were often in the daycase unit for a couple of hours. Firstly we had to play 'hunt the vein' for the cannula and then start the saline drip.. then we had to wait for the Velcade to come down from the pharmacy and after two nurses had confirmed my details etcetera we finally had the infusion… followed by another five to ten minutes of saline to wash it through.:-(

If we were lucky and all of the elements came together we could be in and out in forty-five minutes… but the first infusion of each cycle always took at least a couple of hours.:-)

Please tell me your waiting time was short… the subcut injection painless and easy and that you were in and out in less than an hour.8-)

Dai.

[DizzylizParticipant]

Hello Michelle,& Shirley, Thankyou for your replies at the moment were taken each day as it comes, I think we're both remembering the rest week off dex with a big groan! Are we ready for this? No but we are both keeping strong.

Love liz& kev xx

Hello Dai, wel what can I say Tuesday 4 hours wait for a 5 sec injection! Friday 2 and half hours, waiting room and treatment room full. I think cut backs are kicking in there seemed to be hardly any staff lets hope next weeks a little quicker!
As for the injection straight into tummy a bit sore and leaves quite a red area but it doesn't bother him to much.
I'll keep you posted .

Thanks love liz & kev xx

[Author]

Posts