I’m doing ok, I just keep busy so I don’t think too much about things. I am trying to look after myself too. I’m so pleased he is doing ok with the chemo, but worry about the next stage of high chemo and the stem cell transplant process. It sounds really harrowing and a long term issue. There are so many things to go wrong, but I know it is probably his best chance of getting the myeloma under wraps for a while. He’s not great with staying in hospital and we haven’t been separated from each other for more that’s a day for over 30 years. I suppose it’s a small price to pay. I must continue to be positive and take it a day at a time.
Won’t be long now before breaking up for Xmas holidays…
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It is certainly not easy @Olivia but I have found trying just to take it a day at a time and not looking and worrying too much about future treatments has helped me.
Glad you break up soon.
Look after yourselves
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Yes - I think one day, sometimes even a couple of hours at a time is just fine. It helps us not to worry too far ahead x
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Hi Olivia
I had DVD and velcade does leave a red patch for a day or so. You may find it bruises a little or leaves a mark which will fade.
Treatment does come along with fatigue and listening to the body is good and resting which helps the body recover
Myeloma itself can cause fatigue
Blood counts are being lowered with treatment which is why it’s tiring bad and good cells are being destroyed then rebuilding then get knocked down again next treatment
I noticed that hubby was having Zometa
Flu like symptoms for a couple days
Bone pain for a couple days
Headache and may feel be sick are some side effects
Also it can make you feel very tired where it’s hard to get out of bed but it does ease after a couple days
I had pain in my teeth and gums and flu like symptoms that were painful so I asked for the infusion over 30 minutes with a good flush after to move it around my body
I found the pain was much better
Dex sleepless nights are well known
I’m like a bunny on steroids and chatter for England I feel like I can take on the world 
Then the come down days shakes feeling tearful can’t get my words out
Some people sail through stem cell transplants while others have a harder time.
I have had two as myeloma is a relapse remit cancer
My first 2017 my second 2022
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Hi 2DB ,
This site is great. It’s so good to hear people’s experiences, first hand. I really appreciate you responding. It’s not so nice seeing how so many have these diseases. It seems that you had various issues. Good idea about the Zometa infusion we will bear that in mind. All these little things you suggest are really big things long term.
How are you doing generally these days? It must have pushed your body to its limits having had two Stem cell transplant’s. Fingers crossed you continue to progress and are able to live your life without too much interference.
It would be nice to stay in touch, I hope you let us know how you are getting on.
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Hello all. I have managed to find this forum online after a family member recently being diagnosed with Myeloma. We have an appointment booked at the Christie to discuss the RADAR clinical trial which has been mentioned in this forum. I was just wondering how your experiences have been with this method of treatment. Any recommendations would be truly appreciated. Thank you! 
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Hi @NathanG welcome to our forum.
I will copy your post to the Blood Cancer UK Support Services in case the Clinical support team can help at all @BloodCancerUK-SupportTeam
I think it is really difficult to know what to ask with an unknown..
Perhaps write down all your fears, questions and practicalities so you cover everything on your mind.
Please do let us know how you get on and really look after yourself.
@Olivia hi! How is your husband getting on now? I just started the radar trial
@ Byrne baby,
Sorry for the delay. Welcome to the forum. Hope you are ok. Hubby is currently doing ok thanks. He is currently on maintenance drugs and has been for over a year. He has fortnightly isatuximab infusions along with dexamethosone and takes lenolidamide tablets for 3 weeks on and a week off. He is not as fatigued as he used to be as he stopped his tablets in the morning and started taking them at night. It has helped a lot. He is still building up his stamina, I just need to get him walking everyday. At present he goes every two days. Please shout out if you have any questions, we know how daunting it can be. This forum has been great. The radar trial has done so much good for many.Im keeping my fingers crossed it continues. Sending you lots of positivity.xx
@Paula1 , hi there, how is your treatment going on the trial? Have you moved to monthly, I know you were undecided? How is your granddaughter doing? Hoping all is well and you are still improving every day. Let us know how you are getting on. Take care. X
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How are you getting on Paula?
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How are you getting in Nathan! I’m on week 2 cycle 1 of radaruk trial
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Thank you for getting back to me Olivia! Hopefully I’m doing ok, I had my second jab on Friday along with zometa, cyclophosamide, dex and Len daily, and all the other meds , getting into the routine of them now, I’m similar to your hubby not been apart from hubby for more than a day here and there over 37 years, so Stem cell transplant time will be very upsetting I guess, I’m glad hubby is progressing well, I’m hoping to be able to get back to my walking at some point also, but I guess it hits everyone differently, and there can be issues along the way x
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Hello, sorry it’s been so long since I’ve been on here, I seem to be doing ok since I started going monthly for treatment, I’m off steroids and I have isatuximab and zometa which seem to be fine. Waiting for another bone biopsy apt now as it had been cancelled for some reason.
Anybody heard about the new drug they called the Trojan horse?
Hello Nicola hope you and hubby are doing well. Xxx
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Hi Paula! Thank you for answering, are you happy with how everything is going? I’m on the same trial as you are, at Glan Clwyd, north wales, is it keeping your numbers down? Hope you are keeping well x
Hiya, yes I seem to be doing well and my numbers are behaving, I’ve been on it 4 months now. Consultant said I didn’t need to be on steroids so I’m happy about that
Are you doing:feeling ok?
Xxx
That’s great news Paula, I’d give everything to be off the steroids! I had my 2nd lot on Friday, and I feel destroyed today, kind of like ‘ what’s the point’ 
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Hi @Byrnebaby it sounds like a tough time today, that is what we are here for.
Virtual hugs xx
@Erica thanks Erica, I think the dread and fear is just something I’m going to have to learn to live with, for as long as I’m here I’m just in a constant state of panic and can’t really relax or get away from this diagnosis
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Hi @Byrnebaby just give yourself time, try and do lovely things to divert your mind and take lots of special care of yourself
Sending lots of love x
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