[lezastarkeyParticipant]

Husband had 2 auto transplants. Relapse for 3rd time in Nov. Now om Revlamid and Dex. Paraprteins are coming down nicely, last reading is 6.7. Wonder what happens in future. Does he stay on this forever? Does he come off and go on something else. Question is. What happens next. Going to ask at our next appt but wanted views. Ty.

[tomParticipant]

Morning Leza

I have had two auto SCT…I am on my fourth line of treatment and that is Daratumummab….I am on my treatment every two weeks, starts on weekly for 8 weeks then every two weeks for 8 weeks (I have just had my third infusion on this one) then it goes to monthly infusion until it stops working or I get too many bad side effects….have to say it’s treati me really well….fingers crossed for your present treatment and it’s a smooth ride with it…..but if you have to move onto your fourth, if it’s like mine it will be good….Onwards and upwards

Tom

[lezastarkeyParticipant]

Thanks Tom for your reply. It’s good to hear about your next steps. Its such a worry especially to my husband. Thanks for your reply.

[tomParticipant]

Liza
It’s no problem at all…..always here to help…..and you know where I am…onwards and upwards

Tom xx

[lezastarkeyParticipant]

Hi Tom, don’t want yo quiz you too much. It what happens after fourth line of treatment? Is there another drug to move on to?

[tomParticipant]

Hi Leza. It’s not a problem, ask away and if I can answer I will…but as for fifth line I haven’t looked or asked about that…as am sure by the time this treatment stops working their will be newer treatments coming through it’s like everyone is trying to find a cure for myeloma and things are moving along nicely…..the CAR T CELL THERAPY is looking good, started trials in Leeds, but doing it for children with blood cancers first….but that looks great….
Try not to look to far ahead..I don’t I live for today….and wait till I need to think ahead when the time comes, I find it easier, as I have had this for 10 years now so have learned to live with it and take it as it comes….
Feel free to ask me anything I will answers you honestly…
Onwards and upwards

Tom x

[maggiemayParticipant]

Hi Tom my husband has myeloma and I have been on this site for 8 years and have followed lots of posts and remembered that you always liked a wee vodka or two hope this is still the case and it still fits in with your medication. Hubby doing well 6 years post SCT and enjoying life.

Always loved your tag line onwards and upwards.

[tomParticipant]

Hi Maggie
Good morning, yes still able to have a few drinks am pleased to say lol. But have to wait three days after my infusion, didn’t drink much at all whilst on weekly infusion as after my three days it was Sunday ….then I had none on Monday as I had to do bloods on Tuesday for my weekly infusion on Thursday….so decided to be drink free…..from November until Christmas, as I had a longer break due to bank holidays.

It’s better now as the treatment has moved to every two weeks now…..so yep a wee vodka and a few beers, and the odd glass of red is good for me…
Pleased hubby is doing well please give him my best wishes……
Have a great Sunday….I can have a drink today lol
Onwards and upwards

Tom xxx

[maggiemayParticipant]

Hi Tom

Hope you enjoyed your wee tipple yesterday. Hubby keeping good and we are off
to the Caribbean on the 18th Feb he has some back pain and gets tired quickly but other than that keeps well. He was diagnosed in 2011 with a plasmasytoma in his spine had 25 sessions of radiotherapy followed by CDT and a SCT in 2013. He doesn’t dwell on his condition and I don’t think he even knows this site exists but I have kept a watching eye on this site over the years and followed you, Dia, Eve, Stephen and Jean. I have always admired how you have dealt with things and to be honest have looked to you as a benchmark. I hope things work out well with your treatment and you continue to enjoy life. Cheers onwards and upwards. Maggie xx

[ale2104pParticipant]

Dear All,
This thread of messages has given me so much hope to look forward to the future. Thanks very much.

Just a little about me: I am a newbie as I was only diagnosed in August and started chemo in September. I started on VTD but after 2 cycles, we had to stop and moved to KRD. I am now on my 4th cycle and if everything goes to plan will have ASCT around end of March/April.

Maggiemay: I hope your enjoy your CARIBBEAN trip – I am from the Caribbean myself! I have been trying to plan a trip to go home but find that medical insurance is so expensive. If you don’t mind – who did you get to cover you (if you took cover)?

Greetings Leza, Tom and lets continue to do like Tom says “onwards and upwards”. Personally I live it moment by moment.

[tomParticipant]

Good morning Solly
I am pleased this thread has given you hope. As for insurance I will see if I can attach a link to the ones we use…I used…..nowicantravel

cant add the link am afraid….but good luck getting insurance and enjoy your holiday back home xxx
Onwards and upwards

Tom x

[maggiemayParticipant]

Hi Solly

I am glad you are thinking positively and taking hope from these messages. Like Tom we very much live for the day as regards insurance I wouldn’t travel without it particularly the Caribbean,as you would know,any urgent treatment would require an air ambulance to the USA and we all know what they charge for treatment. I shop around and have also used nowicantravel.com for the last couple of trips. First trip to Caribbean after SCT cost £700 but this time it was £360 and that is declaring everything, including the last time he sneezed, Europe is much cheaper. It has been said before, this illness is a marathon not a sprint enjoy your good days and you will make the beautiful Caribbean soon enough. Take care and to quote the wonderful Tom’s mantra onwards and upwards. Maggie xx

[ale2104pParticipant]

Thanks Maggie and Tom,

Your feedback and encouragement keeps me going and looking towards the future. I can’t wait for my next trip back home as soon as SCT is over.

Have a great weekend all.

[tmcintyreParticipant]

Hi,

My husband has his SCT in January 2018. He didn’t respond to initial induction treatment of VTD so had two cycles of Cyclophosphamide and Dex followed by three cycles of Revlimid/Dex/Ninlaro (trial drug). This had good results so his consultant decided to keep him on Ninlaro and Dex for the forseeable future as “maintenance” (he didn’t go back on to Revlimid as he devloped an upper body rash at the end of his third cycle) Presumably he will continue with this until it either stops working or he can no longer tolerate it.

Hope all goes well with you.

Teresa

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