[DizzylizParticipant]

Having not been on the forum for what seems like ages I do look in from time to time to see how everyone’s doing? For those who might remember me I’m carer for my hubby kev who recently (April) relapsed after 31 months on revlimid/dex he then had 2 cycles of bendimustine/ thalidomide/dex which was stopped last week with his lights chains rising from 87 to 1056 and still rising so today kevs been admitted to start DTPACE a combination of four diff: chemo’s over the next few days to try and get his counts down enough to do a second sct, it may take a couple of goes to get there so fingers crossed it works, they were thinking pomalidamide but now think there keeping that as a possible option if the above doesn’t work!

Not seen a lot written about DTPACE so we’re going into the unknown and I must say its the first time I’ve felt scared for kev but he says he’ll take whatever they give him, and the team say apart from MM he’s in a good position to cope with this harsh next stage of treatment. I wish you all well on this MM journey. Love Liz & kev xx

[bandityogaParticipant]

Hi Liz

Hope all goes well for Key with DTPACE and SCT.

Maureen x

[DizzylizParticipant]

Thank you Maureen, kevs had his pic line fitted today and all ready to start chemo tonight
He seems relaxed but not happy missing this lovely sunshine.

Take care Liz & kev xx

[andygParticipant]

Hi Liz.

I was tried with DTpace in 2012. After five days in hospital hooked up to all the infusions and the constant beeping I was later given a BMB which showed that most of my bone marrow had been wiped out though not the myeloma so I didn’t get a second cycle. It seems DTpace is like marmite it either works well or doesn’t work at all. There doesn’t seem to be much of a middle ground.

I’m on Pomalidomide myself now in the middle of my 20th cycle. Hopefully DTpace will work and Kev can keep Pomalidomide can be kept in the cupboard for a later date.

Every day is a gift.

Andy xx

[DizzylizParticipant]

Hello Andy

Nice to hear from you, kevs been home from hospital since Sunday first cycle of dtpace done, went for bloods & checkup yesterday and his neutrophils had gone from 1.9 on Sunday to 0.6 so they think he will be going back in poss: Friday if not before, he woke up this morning feeling dreadfull so might be ringing them earlier than planned?

Andy you did well on the Rev/dex regime which Kevin got 31 months!,
And your going great on the pomalidimide! Good for you long may it continue,
If this dtpace doesn’t work and he can’t have a second sct, there’s a stand by (Pom:)
Kevs two sisters have been tested but don’t match so we’re hoping this will.

Take care & keep well, Liz & kev xx

[andygParticipant]

Hi Liz.

It’s my Dex night so I sometimes come around here to check how everyone is getting on. I used to be around more often but I found the forum website a bit difficult and slow after it got “updated” though it’s behaving itself tonight.

How is Kev getting on? Did he have the second round of DTpace?

You mentioned Kev’s neutrophils being 0.6 that reminded me of when was on RCD my neuts were never far from that for 18 months!

I hope you are ok too Liz I’ve always thought carers get the s****y end of the stick.

Every day is a gift.

Andy xx

ps. Seems to me the site has been sorted. No problems whatsoever tonight.

 

[DizzylizParticipant]

Hello Andy,

I’m not on dex and I’m awake all hours with stuff going round in my head so decided to get up at 5.30 this morning and leave Kevin sound asleep due to the 200mg thalidomide and the very low HB 7.5 so today it’s blood transfusion. Kev had his 5 days in hospital having dtpace then home for 5 days till immune system went to zero, back in till this weekend. He had platelets & blood transfusion and did quite well, went to clinic for check up yesterday and his neuts are 1.75 but HB low hence another visit today.

Keys seeing the consultant next Monday if alls well it’ll be round two that week, we’ll also see first flc test to see if there’s any downward movement? Fingers crossed.
Glad to see pomalidimide is working for you that’s great long may it continue! Hope you got some sleep take care. Love Liz & Kev xx

[DizzylizParticipant]

Update on kev,

In clinic seeing the consultant with blood results HB up to 9.0 from the previous week 7.5 so a little better, FLC went down from 1400 to 1150 they were hoping at least half! So not as much has they’d liked so kev was admitted last night to begin cycle 2 of DTPACE, hoping it gives MM a good kick up the backside! In readiness for SCT take two where they will be using kevs second lot of stored stem cells and then three months later some donor stem cells they call it a tandem, the transplant team are looking at the Antony Nolan register for a match has is siblings were not a good enough match.

It’s lovely to think since talking to friends & family how many are joining the Antony Nolan register thank you! Keep well love Liz xx

• This reply was modified 9 years, 3 months ago by  Dizzyliz.

[bandityogaParticipant]

Hi Liz

It must be a worrying time for you both but stay positive. I hope the second lot of DTPACE will zap those FLC so Kev can have a SCT.

Hoping all goes well.

Maureen x

[DizzylizParticipant]

Well where do I start! Kev had his second DTPACE which hit him a bit harder than the first cycle most of August was spent in the hospital trying to get his neutrophils back up and low HB, infection in his blood, then finally home to some normality what ever that is? Kevs appt to get his FLC results 27th August was overtaken with kev taking ill and admitted that afternoon before he got to see consultant, had his pic line removed and kev felt a lot better! (The source of a bug) But wait for it…… Tuesday after bank holiday on ward rounds kev was told they are starting Stemcell transplant today!! Can’t believe how quick this has come about they feel kev is in a good position to go ahead and he has the melphalin this morning and his own Stemcells tomorrow! Kev had another pic line in yesterday in his other arm so fingers crossed it behaves, we are both still in a bit of shock but elated as well.
Kev knows what to expect second time around so he’s seems to be coping well on the surface?
And as you can see I’m babbling (at this time of the morning) nervous! Gonna get to hospital early today armed with me flask and iPad and sit with my man!

Wish kev (Us) luck! Keep well everyone going through there journey!
Love Liz & kev xx

[annlynnParticipant]

Good luck for today and the days that follow everyone will be rooting. for kev scarey time but like you say you no what to expect like having your second child !!! not. quite good luck. xxxAnn x

[jes1965Participant]

Good Luck…. to you both

 

[bandityogaParticipant]

Hi Liz

It is a difficult time for you both but try not to worry too much. It must have come as a shock to be told Kev was going to have his SCT so soon. I hope all goes well with and Kev will be home soon.

Maureen x

[bandityogaParticipant]

Hi Liz

It is a difficult time for you both but try not to worry too much. It must have come as a shock to be told Kev was going to have his SCT so soon. I hope all goes well and Kev will be home soon.

Maureen x

[DizzylizParticipant]

Thank you, annlynn, jes1965, & Maureen,

Been at kevs bedside all day he’s had his Stemcells today, melphalin has upset his stomach and he’s not eaten since yesterday morning but other than that he’s coping well.
I’m now home knackered on the settee chilling! Might even have a glass of wine?

Early night I think and try to sleep?

Thank you all Liz xx

• This reply was modified 9 years, 2 months ago by  Dizzyliz.

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