I found a link here for you about recording an appointment
You can ask to record as a reasonable adjustment as we are covered by the disability act
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Hi 2DB I can’t remember if I replied to your lovely comments (and apologies if I didn’t) and am so grateful for your advice and information re my CT scan.
Hopefully tomorrow things will become clearer for us so we know where to go next.
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You don’t need to apologise 
It makes me happy that I can help you in some form
Will be thinking of you tomorrow
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Hi @Trish ,
Will be with you tomorrow, holding your hand virtually anyway. I have everything crossed:crossed_fingers:
Hugs xxx
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Hi Trish,
Maybe your partner could write down the responses while you ask the questions. Don’t be afraid to ask him/her to slow down and to wait while you note down his answers. You could ask him if he’s Ok with you recording it as well.
My questions initially were:
- What are the results of my blood tests?
- What does that mean?
- What is the next step and what are you looking for?
Depending on what he says, your next step may be a CAT scan, Bone Marrow biopsy or a Direct Weighted Image MRI (shows everywhere the myeloma is active).
Have the green whistle if you’re having the biopsy.
When they have done the tests, you can ask what stage the myeloma is.
The treatment seems to be the same in the UK as here in Australia. Induction chemo comes first. Usually 4 rounds of 3 weeks so 12 weeks in all. I didn’t lose my hair through that chemo and it was mainly tablets and 2 injections a week, not too bad.
Let me know if you have any other questions. Remember no question is a silly question, ask away!
Hope you had a great long weekend in the country.
Jo x
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Absolutely Erica, it takes a while to get your head around the diagnosis and to understand it, the more questions asked the better. 19 years ago, what a superstar!
Jo x
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Hi JoB
Thank you so much for this it has helped immensely. I’ve already had my bone marrow biopsy (not nice I actually passed out with the pain, says she who had no pain relief given at childbirth!) which confirmed myeloma. Still waiting my CT scan though, my bloods were taken 2 weeks ago and this was when he did the BM biopsy there and then! No warning! So I’m at a loss really why he needs to see me. But hey ho all will be revealed in the morning hopefully.
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Let me know how it goes 
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Hi JoB I saw the consultant yesterday and he had revisited a CT scan I had done in February this year for my sarcoidosis in my lungs. Well it showed lesions on my ribs which they missed and has now been confirmed as myeloma!
Now the s**t has hit the proverbial fan and I am now at a serious stage and are going to throw everything at me in the next week or so!
I am seeing the specialist nurse on Friday (I can go any earlier) who is going to give me a written plan of my immediate ongoing treatment for the next 6/8 months ending with the stem cell transplant!
I was absolutely devastated I’m not going to lie! To have missed that in February it’s been active in my body for 6months now and I dread to think where it has spread to!
The consultant said the treatment is the same no matter how much it has spread so I am digging deep and will fight this. My daughter is getting married in 12 months time and I will be there that is for sure! With or without a wig!!!
Thank you for taking time to ask me how I got on it means such a lot.
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Hi @Trish I cannot imagine what is going through your mind and emotions right now, just be ever so kind to yourself to come to terms with it.
When I read your post I remembered that when I was first diagnosed I just wanted to sort of pull the blood cancer out of all over me.
Please do let us know how your appointment with your specialist nurse goes on Friday.
They are a good point of contact for you.
Really look after yourself and please keep posting
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Hi Erica
Thank you for your kind message. Very mixed emotions right now it’s truly exhausting! It’s bad enough with the fatigue that comes with this condition without all the emotional turmoil as well!
I am off to Cardiff tomorrow with my daughter to choose her wedding dress. It will be a lovely happy day and for once I will forget about this awful disease! x
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My fatigue is also triggered with emotional stress @Trish
What a lovely, happy, bonding, fun day tomorrow choosing your daughters wedding dress with her and a perfect diversion for you.
Please do tell us know you get on, enjoy.
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Hi Trish,
The good thing is that they have found it and on Friday you will have a plan moving forward.
Myeloma does tend to go everywhere as it’s a blood cancer but the treatment is good now and very successful. Most people have it for years before they find it and then only find it by chance eg if you fracture bones or have issues with your kidneys. I’m guessing you aren’t at that stage which is good.
I imagine you might be on a similar chemo treatment to me, Velcade, Revlamid and Dexamethasone (VRD) plus tablets to protect your kidneys etc until they get the myeloma numbers down, then comes the stem cell transplant and if needed another couple of VRD rounds.
If you have any questions after you see the nurse, feel feee to ask. I was diagnosed in January this year and started treatment in Feb, had the transplant in June and today am starting the final 2 rounds of VRD which should take 6 weeks. Don’t forget to ask the nurse questions too, take your notebook!
Have a brilliant day shopping for your daughter’s wedding dress. Tell her to check out Eliza Jane Howell wedding dresses on Instagram they are stunning and very reasonably priced!..
Jo x
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Hi Trish,
I thought I had replied to you yesterday, sorry! I can understand you must be in shock and are still trying to take it all in.
The positive thing is that they are putting a plan in action for you and things will happen quickly now.
I would imagine the treatment may be similar to mine which has been VRD induction chemo to start - Vecade, Revlamid and Dexamethasone. I had 4 rounds, each round is 3 weeks. Twice weekly injections of Velcade, as well as Revlamid and Dex tablets plus other medications to protect your kidneys and to protect you against infection. You may also have Zometa which is an IV infusion monthly to build up your bones as the myeloma damages the structure of the bones.
Then you move into having the stem cell harvest if you have an autologous one (your own stem cells) and then the transplant where they put your cells back in.
I am having the induction chemo again in around 4 weeks for 2 cycles (6 weeks) which should mean I will hopefully then go on to maintenance treatment around mid-end of Nov.
I was diagnosed in january 2023 and started treatment a couple of weeks later in February so it has definitely been a journey and a long process. Try to prepare yourself by taking regular exercise and eating well. Stay positive, the treatments are good and there are also lots of great trials happening which have been really successful as well. read here
Take your notebook with the questions you have for the nurse and I’m here if you want to reach out
Have a wonderful time shopping for your daughter’s wedding dress. Check out Eliza Jane Howell’s wedding dresses. They are amazing… https://www.elizajanehowell.com/
Take Care
Jo x
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Hi Erica
Once again thank you so much for your reply. I had a wonderful time in Cardiff yesterday with my daughter, bridesmaid and step mum looking for my daughters wedding dress. We found a most stunning gown in LauraMay Bridal and was the very first one she tried on! She still tried on about 20 others mind which was a truly amazing experience 
x
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Hi Jo
First of all please don’t apologise you had replied to my previous post and secondly thank you so much for taking the time in responding.
The information and advice you have given me is very much appreciated and exactly what I needed to hear right now!
I am feeling so much more positive a relieved to a certain degree that my unknown future journey may not be as bad as I first anticipated. I appreciate everyone is different and some may have tougher times during their individual journey than others but for this you give me hope and I truly thank you from the bottom of my heart.
In the short time (only one month) since my initial phone call to my consultant where I questioned my deterioration in my symptoms, to having my bone marrow biopsy, getting my results from that, then my diagnosis of myeloma, then my CT scan (I was told the results would be 2weeks) to having my future treatment plan confirmed with the specialist nurse later today! I cannot complain at the treatment by the NHS staff I have had so far. Well apart from missing a key point last Feb of missing the lesions in my ribs from a CT scan I had which has now been confirmed as myeloma! Thus allowing this disease to develop for over 7 months!
I am looking forward to discussing my future plans with the nurse later on today and can’t wait to start this uncertain journey I am about to take but what I do know is that I have found some very special friends on here in a very short time and for that I am extremely grateful, and I know you will be with me every step of the way too!
On a very happier note my day yesterday spending time with my daughter, step mum and bridesmaid was exactly what I needed right now! Seeing her find her spectacular wedding gown and to see her beautiful face shine with so much love in her eyes for the first time there were tears of joy (from me too) and not sorrow! I will never forget how she made me feel yesterday and that will carry me through the next stage of my journey.
Thank you so much for you ongoing support and I wish you all the best with your continued journey too x
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Hi Trish
Now you know where your heading it must be a relief
My myeloma had been active for 6-8 months before I was diagnosed I was quite poorly even though I felt ok
I was diagnosed on a Wednesday bone marrow biopsy done a CT scan the following Tuesday another BMB on the Wednesday starting chemo on the Friday
It was really quick
March 2017 had my Stem cell transplant in the November and by day +100 in a good partial remission which lasted for 5 years
During that year I managed to attend my best friend daughters wedding
Daratumumab is being used as a first line treatment DVD now this wasn’t available at my diagnosis and it’s having good results
My second mum has just finished cycle 2 and is so far having good results light chains are now zero even better than my less than 2
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Hi @Trish,
You just popped into my thoughts today and I’m wondering how you are doing, as we’ve not heard from you for a few days?
Hugs, Alex
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Me too I was wondering how you were
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Hi Alex and 2DB
Thank you so much for checking up on me. I really do appreciate it. This site is full of so many kind and lovely people I feel I have friends for life.
My meeting with my specialist nurse didn’t really go to plan a week ago last Friday. For starters I was completely exhausted from my journey to Cardiff in search of my daughters wedding dress the day before. Whilst we all had an amazing time I didn’t anticipate how much it really took out of me.
We arrived at the hospital at the agreed time to see my nurse. She said she did not have my programme of treatment as it had not been forwarded to her from the ward! Not a good start!
I must also add the hospital has closed the cancer ward due to the buildings issues with the crumbling concrete therefore all treatment will be done in the corridors!!!
The nurse had to keep dipping in and out of my appointment due to staffing problems and her need to be elsewhere. She was trying her best to go through what treatment I would be having but to be honest my head was in such a fog and I kept falling asleep. Thankfully my partner was taking notes. I had 2 blood tests taken and had to leave it 30 mins between tests.
We came away from the hospital not really taking in much of what was said because there was too much information.
I had hoped to have heard from the nurse on the following Monday, however I emailed to ask for an update. No reply so on Wednesday I rang the tel number I had been given which went to voicemail. I left a message explaining how worried I was and needed a start date for treatment asap. Within 10 mins I received an email from my nurse saying my treatment is starting on Mon 18th Sept! Another 10 day wait! 6 weeks after my diagnosis!!!
Further bad news was received from my consultant by phone on last Friday telling me the result of my full body CT scan. Not only is myeloma in my lungs but it is now my worst nightmare, and has spread to my spine! The consultant now tells me I need urgent intensive treatment immediately!!! Like I’ve been the one dragging my feet all this time!!! The start date for treatment still remains the same! He is very keen to start the bone strengthening drugs asap but that has to be confirmed as appropriate by my dentist on Tuesday.
I can’t begin to tell you how let down I feel by this consultant who has constantly fobbed me off with my symptoms I have had from day one 3 1/2 years ago! There’s a complaint going in I just need to put it together when I am more calm. I am also looking into moving my treatment to another hospital and consultant because I feel if I stay where I am I may not even be here next year!
I hate that I feel like this and my whole family and friends are reeling from this news when it could very easily have been nipped in the bud a very long time ago.
So sorry for the rant but thank you for letting me rant. I’m so scared right now I just need to start my treatment x
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