[majic30Participant]

Had CTD 4 cycles, pp down to 1.7 then had harvest. Numbers crept up after having 2 boosters prior to harvesting !!!! Although told no connection! Put on VD numbers gone from 20-27 now trying VCD as a one off but have been pre warned that DT -Pace is likely the next step.

 

having read up on everything we don’t want to go down this route yet unless we really have to. We believe that the first line of treatment was working and went from 13 down to 1.7 …… Maybe we could of stayed on longer but husband was impatient and wanted to get off drugs. It just seems that we are skipping all our other options and choices  in one go????? We don’t get it, the dt-pace is it seems a very invasive procedure similar side effects to sct. I can’t understand why the next line of treatment or previous can’t be tried again.

we have been told that the concern is the numbers going up as quickly as they have ( we believe the boosters caused this) it appears aggressive and needs bringing under control………. My question is  do we do what we are told or are there other options available that are mot so intense and invasive this early on?? Diagnosed January 2014.

I sometimes wonder if financial implications play a part in which drugs are decided in treatment plans. Thoughts and advice appreciated.

 

many thanks

[finnParticipant]

Hi

I agree with you, there is no logical explanation why drugs are not used again if they worked the first time. As your myeloma has not become refractory to the drug yet (I assume the PP numbers did not start to rise while on CTD), why not use the same drug again? Alternatively, as Thalidomide worked so well for you, why not use the related drug Lenalidomide? This should be available for everyone. Maybe the consultant thinks that they need to use something that acts very quickly, but surely it would be good to use something that is known to work too. Good luck with the whichever treatment it will be.

[mhnevillParticipant]

Hi there,

I always think we are the key player in any decisions made about out treatment. Certainly if/when I relapse I shal try to get CDT again as it brought me into complete remission this time.

If you aren’t happy with what is being suggested and team are not willing to discuss things, you could always ask for a second opinion as several on here have.

Another thought, is there a Specialist Nurse on your team? They could be a good support.
Also, don’t forget the MUK Help Line. A marvellous source of up to date information.

All best wishes.

Mavis

[rebeccaRParticipant]

Hi, sorry things aren’t working as good as they should for you. My understanding is you can re-use a drug if it worked well for you , by that, they mean a good remission period. It would appear the MM is hard to treat well and dt-pace is very harsh but could be very effective with its cocktail of drugs. I guess they want to hit it hard and progress quickly to SCT to try and consolidate the treatment. The more drugs you have in the cocktail the more likely it is to reduce numbers and I think there’s about 5 in dt-pace? With regards to financial implications I am quite sure dt-pace comes out top of the price list as its newer and contains more drugs – CDT has been around as a standard treatment for a long time. I believe you are also an in-patient for parts of dt-pace and the added cost of that. If I were you I’d want to throw as much as I could at it now to get the numbers down/stay down – even tho this means very harsh treatment/effects. Does your husband have any cytogenic abnormalities to consider in your treatment plan? Stay strong, you are on a very bumpy road at the moment but things can come good. I think you should trust your Consultant, they are offering you treatment many don’t get offered so at the moment I think you have the availability of the full MM armoury at your disposal and if you feel you want a second opinion ask for one and choose a top specialist in the field – this may put your mind at rest. Equally, ring Ellen on the helpline and talk it all through as she can often explain the reasoning of their decision making process and flesh out the bones – so to speak. As Winston Churchill said “If you’re going through hell, keep going”. Good luck

Rebecca

[majic30Participant]

Thank you for the replies:

 

we dont want to swap our consultant at all….. Its just sometimes we see different and get a completly different view on things

alot of the problem from our perspective is TIME ….. There never seems enough to explain things and the reasoning behind them . We know because hubby is only 46 he fits criteria for DT pace, but it doesnt make us feel differently….. We just feel at the moment all of our eggs have been thrown into one basket. We are led to believe the dt pace line of treatment is something that was used previously along the lines of traditional chemotherapy drugs years ago??? I also feel that other lines of treatment should at least be given a chance before we go full on into this invasive pathway. It just seems too much too soon and after having a much more toxic drug cocktail to then go to sct????? Surely he wouldnt be strong enough to cope ??? ( maybe im worrying too much) . I really feel and believe there is no right or wrong way to treat mm……..everyone is different, i have read and scrolled the internet on as much info as possible, based on what we know and understand  we will speak to dr in view of an alternative to dt pace at this moment in time.

it may be we have no option but as mavis stated …… We should be the key players in any descisions being made.

fingers crossed he gets to try a different combination first.

[bandityogaParticipant]

Please phone the myeloma nurses on this site who can advise you on treatment. You could also ask for a second opinion.

Good luck

Maureen

[rebeccaRParticipant]

Hi, you may find Deborah Bones blog interesting as she has had dt-pace quickly followed by a recent SCT and you may find it useful/comforting that she is coming through it all OK tho it hasn’t been a walk in the park,Fingers crossed.

[majic30Participant]

Where would i find  the blog please

 

thanks

[rebeccaRParticipant]

HI, just type in Deborah bone blog in google and it’ll take you straight there

[Author]

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