I had my appointment yesterday. I’m being referred on to the hospital where I had my transplant. I’m still keen to take part in a clinical trial but it’s not clear if I fit into one easily. So I may have to have Ixazomob, Revlimid and Dex (IRD) instead. Nothing is very clear yet but hopefully soon I’ll know what my treatment options (if there’s more than one) are. I have to remember that not many years back there were barely any options at all so we are living in better days in that respect 
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Hi @Coastgirl
Well it sounds like you got the beginning of an answer, which is a start. I hope that seeing someone at last and getting some partial suggestions has helped a little? And being referred to your transplant hospital - I think that would give me a boost, as they are the experts - has it boosted you? I hope so.
Have you ever spoken to anyone on IRD? What are your thoughts on those?
Yes, it is pretty amazing how things have come on recently for various blood cancers. I often read of new drugs and treatment approaches. I hope you can hold onto that, and here’s hoping you get an appt through with your transplant hospital quickly, to discuss trial options and any other treatments that night be appropriate.
I hope you’re feeling well physically, @Coastgirl? Not too tired or anything?
Lots of love X X
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Thank you @Fullofbeans.
I’m feeling fine apart from really severe rib pain.
Yes, I think it will be good to go back to my transplant hospital as there are a lot of experts there. I’ll let you know how I get on.
How are you?
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Ah really sorry you’ve got this bad rib pain, @Coastgirl. I can imagine that must literally take your breath away. I really hope you’ve got a decent pain killer? And that you can get comfortable and rest at times? The problem with ribs is every time you breath or move, they can potentially hurt - one of the worst places to get pain. I gather these pains are an unfortunate feature of myeloma - but I’m hoping that means your doctors know how to get on top of it?
I’m fine thanks, @Coastgirl - just recovered from my first dose of covid, and relieved it wasn’t the beast we first heard about and feared. And I was even contacted by the CDU and offered antivirals (my consultant said a year ago I was no longer eligible.) Fortunately, I didn’t need them.
Yes, please let is know how you get on at your transplant hospital. Like you, I have a local and a transplant hospital further away, and I went to the latter today for a check up. It’s always strange going back there - I feel a bizarre mixture of safe yet traumatised. But we’re always in the best of hands at these places.
Lots of love X X
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Hi @Coastgirl i think I replied back earlier in your thread
I relapsed back in Oct 21 after a good partial response to my first transplant in 2018
I’m doing well after 8 cycles of DVD ( Daratumumab /velcade/Dex) then second transplant April 2022 I started maintenance dara in June 2022, my consultant wanted me to start maintenance asap after transplant
I’m now 10 months post transplant with light chains and protein at less than 2
Haemoglobin at 148 the best it’s ever been
While I was relapsing I experienced pain in my neck and lower back (I have a lot of lesions from first time around plus a fracture of my T9)
I kept reporting pain to my team but numbers weren’t suggesting anything (I present with bone disease before numbers rise) for a few months
I had a PET scan in Sept 21 and found to have new lesions on my C3 and my T12 plus new lesions in other places
My PP was 11 from 5 and light chains in the 200’s
Relapse was discussed along with two different Chemo’s DVD or Krypolis (I can’t remember what else is with it)
I opted for Dara as it seemed a kinder regime to what I had experienced with ESHAP
Dara I have tolerated well and it’s been the best regime for me.
After 8 cycles Protein 4 light chains less than 60 and into second stem cell transplant
As you know regimes are tailored to your specific myeloma traits
I don’t have genetic issues like t4-14 or 1q gain
I was refractory to VDT so thalidamide was ruled out for second line
Think I have covered everything
If your on Facebook there is a UK myeloma forum with many first relapsed myeloma buddies there
It’s the busiest myeloma forum
I have been on it since 2017
It seems to have become busier over the last couple years
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Thank you @Fullofbeans and @2DB. I’m pleased to hear you’re doing well.
My hospital is on complete radio-silence. If I ever get any treatment I’ll be so glad I won’t mind what the side-effects are! It’s never been like this before. You seem to know a lot of info’ about your condition. My consultant is telling me very little so I think it might be really bad. But hopefully not. I’ve been positive for ten years but this is a really different experience of being told things are bad but not being given any kind of plan. I’ve been on the phone and email all day so far to no avail! Sorry to sound negative. That’s not usually how I am .
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You don’t sound negative to me @Coastgirl it is scary and frustrating getting ‘radio silence’ the not knowing and being out of control of others.
Perhaps write down all the questions you want to ask and please let us know what happens.
Look after yourself
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Thank you, @Erica. I made a little progress today. My consultant’s secretary has emailed me all the letters etc that I’ve not received since the end of 2022 and so I learnt some insightful information. It’s very strange that our post-lady calls regularly we’ve received plenty of bills and cards and other things through the letterbox, but nothing from the hospital (they do have our correct address). A friend sent me a beautiful scarf today, out of the blue. All things considered, I’m much less grumpy than yesterday!
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Great @Coastgirl a little progress seems good to me and I am glad that you have found some insightful information.
What a lovely friend you have, it means so much.
Glad that you are less grumpy today, look after yourself!!
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Oh @Coastgirl, I’m really sorry there seems to be a communication problem from the hospital’s end at such an important and worrying time for you - that’s a bit of a disaster. It just ups the tension and frustration no end - which is absolutely what you do not need at the moment.
I hope what you’ve managed to glean today has helped you to understand likely pathways forward. And when you might actually see someone.
Sounds like your friend sensed through the ether that you needed something lovely to cheer you up - what a special friend.
Really hope you get more information, choices and support (and post!) soon.
Lots of love X
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Just a little update on my treatment saga: regretfully I am not suitable for any clinical trials at this stage but my third line treatment has now been decided on. I don’t yet have an appointment for being prescribed the drugs, but hopefully one will become available soon, as my disease has come back more aggressively this time.
The good news is that this IRD treatment is entirely tablet-based: no lines, no scheduled hospital stays, no sub-cut injections and (I’m fairly sure) no hair-loss. It is quite incredible how far the treatment for relapsed myeloma has come and that is partly why I hope I will be suitable to take part in a trial one day.
A less-exciting thought is that IRD comes with all manner of indelicate side effects, however fortunately Myeloma UK are holding a digital info’day on Gastrointestinal Disturbances on Wednesday 22nd March, 5-6pm so I’ve signed up for that in preparation:
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Thanks so much for letting us know, @Coastgirl - and such good news they have an easy-to-administer treatment available for you. Am so relieved to hear that. And exactly - a bit of time on that, and there may well be a new trial suitable for you too.
You must be heaving a sigh of relief that you won’t have to have another line in, or to stay in hospital. And hopefully Myeloma UK will have some good tips on side effects as well. I’m sure other people will find your link useful too - good of you to put that up there.
I hope you can relax a bit now, and do something lovely for yourself. It must have been so difficult waiting for this information.
Sending you a big hug through the internet ether.
Lots of love to you. X
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Thanks so much for updating us @Coastgirl. I’m really glad you have a treatment plan, albeit one with not so nice side effects.
I am so much better when I have all the information so it’s great that you have signed up to this.
Please keep us updated on how you are doing.
Sending lots of love x
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Thank you @Fullofbeans for the well-received virtual hug and to you @Nichola75 for your supportive post.
My appointment to sign consent is just one week away. I think after so many delays (two months) I will welcome the treatment with open arms, whatever the side-effects may be!
It does make me appreciate that we do have so many more treatment options these days thank you to the pioneering work of @BCUK and other myeloma/cancer charities and all those involved in medical research…
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