[ree2112Participant]

I had a call yesterday from my SCT consultant. I’d been expecting him to call to tell me about my line fitting appointment. No appointment. No transplant. It’s been cancelled. This is the 4th time. GUTTED!!!
My myeloma has reared it’s ugly head. In July at my transplant hospital my paraproteins were 3.8. Now they’re up to 11 and climbing. My consultant sounded really quite genuinely fed up as I’m ready. He said that I’m as fit as I’m ever going to be in fact the words he used was ‘all the other test results are banging’ I took that as a positive.
Back in August, my haematology consultant phoned me for a catch up as she’d been on holiday, nice of her as the other one didn’t, asking me a few questions and then went on to tell me that my proteins were on the rise. But to go on holiday and come back ready for my transplant.
I’m just feeling sorry for myself today. A bit woe is me. I’m seeing my haematology consultant on Monday morning and here goes on another 4 cycles of treatment. VTD worked well for me back in 2020 but I don’t know what she’ll put me on this time…
I’ve done it once I can do it again. Right? Because if I do I will be in to have the SCT straight away as my tests were that good.
Fingers crossed.

Marie Bennett

[kh0305Moderator]

Hi Marie,
Oh bless you. I really feel for you as you’ve been waiting so long but don’t lose faith! Unfortunately it happens and those pesky paraproteins can creep up just as you think you’re ready for your SCT. The great thing is that treatments are moving on all the time in MM so no doubt they will have a new combo to get you on to get you back on track. I totally understand you will be having one of those rubbish days but let yourself have that time and then turn it around and try and stay positive.
Not the same, but Dad relapsed back in 2020 and as he had responded so well first time round to meds we expected it all to be smooth sailing but unfortunately it was not the case and we find ourselves two years on, on his second set of meds (after the first lot didn’t work and just made him more poorly) with a further 3 cycles to go. BUT he is steadily improving! So it can happen even when it feels like its taking sooooo long. Keeping everything crossed for you. Stay strong xx

[mulberryParticipant]

Hi Marie,
I’m sorry that you have had this stressful news.
Exactly your scenario happened to a friend from my support group, who then had to go through another treatment package. My friend eventually had the SCT earlier this summer, this time immediately after the end of the last cycle without the delay that usually occurs.
I can imagine the yo yo ing of emotions that you’ve had, having psyched yourself up for SCT only to have to go back into induction treatment, and the worry of “what if” again.
I hope you sail through the additional cycles of treatment.
Jane

[ree2112Participant]

Thanks both
I’m feeling a fraud. I’ve been on about this blooming SCT forever well it feels like it.
I haven’t been into work for the past two days as I feel a fraud. I’d made plans for being off and I’m still blooming there.
I don’t like being woe is me at all but I don’t feel like me at the moment. I should write this down in my notebook.
Jane, what you said about your friend is really encouraging as Dr F did say that would happen so fingers crossed eh?
KH0305 I hope your dad’s doing ok with his treatment now.
I’m sorry to bore you with moaning but thanks for caring xx

[mulberryParticipant]

Ree2112, please don’t ever feel that you are boring others. The forum is here to help anyone with myeloma and everyone affected by the disease to cope with it. It helps others to see the breadth of ‘typical’ experience of myeloma, & to look back over the forum at strategies others have used to overcome these hurdles the disease throws at us. We all know that myeloma earns it’s “multiple” prefix in many ways, including the physical, physiological & psychological hurdles we are faced with from time to time.
The SCT looms so large during induction treatment it’s not surprising that you feel a bit lost now it’s not happening straight away. It’s yet another way that myeloma has taken control away from you- even your work plans.
Believe it or not though, things do get better once the myeloma is stable.

[kh0305Moderator]

Hi Marie,
Please don’t apologise – you are neither boring us nor moaning! It is perfectly natural to feel gutted by this and a little lost as you’ve been following the path towards the SCT and now all of a sudden you feel like it has moved a little bit further away again and you must wonder if you’ll ever get there! Stick with the treatment and keep moving forward. Hopefully it will be stable before you know it and that SCT will have come and gone. Stay positive and we are sending you lots of best wishes right now to help you through.
Dad’s doing ok than you for asking. 3 more cycles after this current one so lets see how things go but hopefully continue onwards and upwards.
Take care and take some time for yourself and come back fighting! You will get there 🙂 Thinking of you xx

[tony642Moderator]

Hi ree2112,

I am one of the forum volunteers. Just to reiterate what has already been said by others, please do not think you are boring us at all, that’s why we volunteer to come on here and hear stories like yours and offer whatever we can to help you though by knowing that there are others like you out there that have gone though similar experiences.

The news you get about it coming back is very disheartening, but always remember that there are other lines of treatment available which may be an option for you. There is always hope, keep your chin up!

Regards, Tony

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