[psg32Participant]

Hi Rabbit,
Thank you very much for your reply and it’s extremely informative.
I’m in the middle of my induction cycles of Daratumuab, Bortezomib, Dex and Thalidomide (other antiviral tablets etc obviously) although with no breaks in between.
It’s good to see that the SCR isn’t the be all and that a consolidation type phase with maintenance is a something for me to certainly bear in mind mind if it’s offered/available to me
I too strive to maintain activity levels, a varied diet and since the start of treatment no alcohol, could be different if I’m able to go on holiday of course. I personally try not to dwell on the fact I have the disease as I can’t really influence its progression etc although I can influence decisions regarding my quality of life. Thus my forum enquiry and questions to yourself as someone who hasn’t followed through with the cell replacement to date and which appeals to me.
Thank you again for taking the time to respond, for kindly letting know your treatment plan and that it seems to be working for you.

All the best for the future.

Regards,
Peter.

[psg32Participant]

Good morning rabbit,
I have my first main treatment review next week that also includes next treatment options, after I’ve had to push to have these offered and discussed.
The idea of the SCR still doesn’t appeal to me with what seems to be an average of six months (ish)to reach an acceptable operating level.
Which treatment did you choose instead of the SCR if you don’t mind me asking please?
I have and am considering the same approach as yourself i.e. to harvest the cells although not proceed with the SCR at this stage.
I’ve had to cancel a solo holiday and have a large family/friends holiday that has been planned for a long time to Corfu that I now not may be able to attend. I appreciate everyone’s response to treatment is different, to manage fatigue with a reduced immune system and be able to travel is basically where I’m at currently and would like to do so, although I’ll need the doctors approval I assume?
As I’ve previously stated quality over quantity is my approach and to be able to carry on with my life as I am (as you seem to have done) appeals far more than an unknown SCR downtime/recuperation level when I could potentially use that time more effectively.

Thank you again for your replies and the feedback you have provided me, good luck for the future.

Regards,
Peter.

[psg32Participant]

Thank you Rabbit for your comments and sharing the personal information. They are very helpful in many ways and highlights that SCR isn’t necessarily the way I have to go.
As you say everyone will react differently to any of the treatments but the insight you have given me is very thought provoking.
In depth conversations need to happen with the consultants etc including further research by myself. Although I now feel that I definitely want to have the smallest amount of down time that’s possible to maintain a quality of life if possible, even at the expense of longevity.
I hope that you find some peace at times within the difficult situation we find ourselves in.

[psg32Participant]

Apologies Loubella, I thought my reply was to yourself and another person who had posted – I’ve now discovered that the replies are individual.
Sorry for any inconvenience.

[psg32Participant]

Thank you Loubella and Rabbit for your comments and sharing the personal information. They are very helpful in many ways and highlights that SCR isn’t necessarily the way I have to go.
As you say everyone will react differently to any of the treatments but the insight you have given me is very thought provoking.
In depth conversations need to happen with the consultants and further research by myself. Although I now feel that I definitely want to have the smallest amount of down time that’s possible to maintain a quality of life if possible, even at the expense of longevity.
I hope your husband Loubella and yourself Rabbit find some peace at times within the difficult situation we find ourselves in.

[Author]

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