My name is Zena… I was diagnosed 4 years ago with MM but have been on watch and wait for this time. Para protein has gone up, so had an MRI 4 weeks ago and have had a letter today to request another one, but not full body, just my spine. It would be so much more comforting if doctors or their secretaries just let us know what and why this is needed, as I start to worry, I do try not to but it’s a bit scary. I joined this support group as I thought it would be nice to talk to people going through a similar situation. Thank you for letting me join. Z emphasized text
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
Hi @Zenaann, a very warm welcome to the forum and thank you for posting- it’s good to have you here. It’s natural to worry especially in-between appointments and scans when you don’t have all of the information yet. Others on here will share their experiences too, I’m sure, but I just wanted to reach out to say if you want to talk to someone you’d be very welcome to reach out to our Support Team (Blood cancer information and support by phone and email | Blood Cancer UK).
Do you have a Clinical Nurse Specialist (CNS) allocated to you, Zena? You may wish to consider getting in touch with them if it would be helpful to ask any questions or share your concerns at this stage. Have you a follow-up appointment booked?
Take care and remember that we’re here for you.
Thank you for replying to me! It’s helpful to hear other people on their journey. I’ve been really fit, i use a juicer to Juice organic veg, plus take cbd oil it’s only been since April that I’ve had such bad pain in my ribs and back, it could be nothing to do with mayloma, but because it’s hanging over us, it’s always what we think it is. I get my consultant phone call next Thursday They saw you really quick didn’t they? Which is so good…. Did you feel unwell before going to doctors? That seems a lot of treatments but as you said we must stay positive.
Thank you jo. Please let me know how you get on
Hi @Zenaann I am so glad that you have joined our forum and posted.
It is always a worry when you have letter like that out of the blue.
I always think every lump, bump, ache and pain is my blood cancer, sometimes it might be and others it isn’t. That is why I always keep my medical team informed.
If I have to see someone sometimes it is quick, others not so quick. I have found NHS backlogs, sickness, strikes etc all play a part.
Personally, although very important, fitness sometimes makes no difference unfortunately.
It is natural that you are worried, you are human, but try and just take it a a day at a time and the main thing is that you let us know how you get on.
Look after yourself @TanyaBloodCancerUK has given you the Blood Cancer UK support number if you would like to chat to someone. You are also part of our forum family now too.
Thank you Erica… I really appreciate you chatting back to me, it’s nice to know that we can encourage and chat to others going through similar situations. My consultant phone call is next Thursday I’ll let you know how it goes. Best wishes Zena
No I was Ok, I was tired and had pins and needles but that was all really. It was just luck that the radiologist was a good one and raised the patchy bone marrow as a possible issue.
Hope your appointment with the specialist goes well.