[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

[kh0305Moderator]

Hi mariposa,
Glad the biopsy was ok and that things are moving forward for you. There are just so many results to take on board aren’t there? You’ll start to get a feel for them as you go through the process and over time will start to focus in on a few as markers which makes it slightly easier to follow! As Mulberry says, everything has to be looked at together but those results seem reasonably positive for no immediate treatment. Hopefully the results will back this up and you can have some time before needing treatment. Keep us posted xx

[kh0305Moderator]

Hi Linda,
Sorry to hear this but, like Mulberry, I’ve also heard of people not having stem cells to harvest unfortunately. Im pleased they managed to get some and hopefully after a period of rest the second attempt will be more successful. Try not to let it get you down – stay positive and lets keep everything crossed for round 2 for you. It’ll be here before you know it xx

[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

[kh0305Moderator]

Hi Marie,
that does sound like a VERY long and boring day! How are the results looking?
xx

[kh0305Moderator]

Hi Marie,
Lovely to hear from you again and with such positive news. I’m really pleased the consultant has turned things around and that you are now seeing some progress and even better that you’re not having to suffer with the back pain so much. Lol good on John calling a spade a spade. Sometimes that is just what is needed and it definitely got you where you needed to be and long may it continue. Hope the kidney checks go ok. Let us know how you get on with everything now you have some forward momentum and hopefully it won’t be too long until they get the SCT sorted.
Dad’s doing ok thanks. He has an appointment next week with his consultant and still a couple more rounds of them to go but so far everything is looking on track which is a much better place than we were in this time last year! Long may it continue
Take care and keep us posted xx

[kh0305Moderator]

Hi Lottie,

Yes, I can imagine they’re pretty unpleasant to deal with but hopefully the ball will help as will the break from the meds. The injections aren’t too bad to administer. I think its the thought of it is the worst part!! Good luck with it and not long now until the harvesting! Another step along the ladder.
xx

[kh0305Moderator]

Hi Mariposa,
It is difficult not to worry I know but you are doing the right things by trying to remain calm and take things one step at a time. At least once you get the results through you will know what you’re dealing with and can start to progress with treatment. Sending all our best wishes and please keep us posted as to how you get on xx

[kh0305Moderator]

Hi ac,
Sorry to hear the rash has developed and hope it isn’t too uncomfortable for you.
I’m afraid I don’t have any answers regarding what is causing the rash, but I do recall a few years back reading an article on side effects of SCT that cited a rash coming up around one week post SCT that couldn’t be linked to medications. I have tried to find the link but it was a while ago that I read it so can’t locate it at the moment but will share the link if I find it. Sorry not to be able to be of more help xx

[kh0305Moderator]

Hi hoffgrad,

I would definitely agree that 1.91 is above the normal light chain ratio from my understanding. I’m pleased to hear that you have been referred to a haematologist and hope the appointment comes through soon so they can look properly at your results and hopefully give you some more definitive information and plans to move forward. I would definitely keep pushing for answers.
Let us know how the appointment goes xx

[kh0305Moderator]

Hi liliv,
That’s great to hear. It makes such a difference when you have someone that takes the time to review things properly with you. Glad you are feeling reassured. Sounds like Mr B is doing brilliantly given he’s only been home a week as well. Hopefully he will continue to go from strength to strength and it won’t be long until he’s feeling less fatigued.
Take care xx

• This reply was modified 2 years, 2 months ago by  kh0305.

[kh0305Moderator]

Hi Lottie,
So lovely to read that everything is moving in the right direction! Hopefully the numbness will improve once the velcade stops. Not long now until harvesting. Keep us posted and hope not too long until you get a date for the SCT xx

[kh0305Moderator]

Hi Caroline
Hope the trip tomorrow goes well and you have some positive news.
Keeping everything crossed for you both.
Let us know how you get on xx

[kh0305Moderator]

Hi lilib,
Glad to hear Mr B is back home and hopefully starting to feel better. Home surroundings always help!
Sorry to read that you’re having a bit of a nightmare with the hospital. We had similar problems when dad relapsed as he had moved since his initial treatment 7 years prior and although it was the same consultant covering both hospitals the new one is so much worse from an admin/comms perspective. Like you, we have had to phone many times and tell them when he should be coming in and what he needs doing and organise the meds for dad and often chase the pharmacy to get them sent out on time (oh they’ll be there in a few days but it doesn’t matter if he starts them a few days late, does it?? Er, yes it does!!). Unfortunately it seems that sometimes we just have to push a lot more than we would like or feel comfortable doing but I’d definitely use the emergency number if you’ve not had anything back yet from your contact and get him booked in.
Good luck! xx

[kh0305Moderator]

Hi Jo,
My dad had Lenalidomide as maintenance following his SCT and is currently receiving it as part of his drug combo for his third round treatment and he’s not had any particular issues/side effects using lenalidomide either time. As Jane says, things are moving on all the time and so many new meds are becoming available so no doubt there will be something even better available soon.
I definitely think that the maintenance treatment benefitted dad and he had 7 years before relapse. It seems you have been put under a bit of time pressure to make the decision which seems unfair but if your consultant believes it to be the right treatment for you then it is probably worth seriously considering unless you are particularly worried about going along that route.
Wishing your husband all the best whichever decision you make xx

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