Hi.
Me again.
Diagnosed with free light chain MM end of January. (Still in shock and devastated).
Was in hospital for 20 days which seemed like forever.
Since I’ve been home I’ve felt like I’m in a safe place and the real world can do one.
Anyway, got the call today that treatment starts this Wednesday (5th March). I’ve signed up for DVd treatment.
I have atrial fibrillation which has been going crazy since diagnosis so they’re thinking stem cell transplant may not be an option if my heart is playing up but haven’t ruled it out completely. (My heart doesn’t have any issues other than the afib)
Since getting the call, all the emotions have heightened again. I’m sad and scared. Feel guilty about putting my loved ones through this. All normal feelings I’ve read. I’m usually quite a positive person but am really struggling with this. I just keep thinking I’m dying instead of I’m living with myeloma. Will this change?
Anyway. My main question is, how soon after starting DVd treatment will I possibly get side effects? Will I start to feel better on the meds or will that be at the end of the 6 months of treatment?
Reading through so many positive posts on here truly helps but I just wish I could switch my mindset to positive.
Hi @Dee123 yes, it sounds like all your thoughts and emotions are very natural.
As you start off by saying you are still in shock and devastated, it took a long while for that to calm down a bit with me.
Then on top of that since getting the call all your emotions have heightened again, I reckon the not knowing of the unknown is really scary.
Personally I also think there is a lot of perceived loss connected to a diagnosis, some is true and others come from fear and shock.
I also have atrial fibrillation which I found did calm down, give it time.
I always think of reading novels and the author writing of the characters heart pounding with fear.
As for your medical questions perhaps they are best asked of your medical team that knows you and your whole medical history.
Although others might be able to share their experiences
I will be thinking of you on Wednesday.
Really be very kind to and look yourself, also please do keep posting
.
Hi Erica.
Thank you for your reply. It means a lot.
Did you still have a stem cell transplant despite having afib? They seem reluctant to offer me one due to me almost being in permanent af now. The echocardiogram didn’t show any problems with my heart despite the afib.
Diane.
Hi @Dee123,
Thank you for your post.
We are so sorry to hear about your diagnosis of multiple myeloma.
We can imagine what a huge shock that must have been for you and how difficult and overwhelming this time must be.
If you want to talk things through with us, at any point, please don’t hesitate to call us on 0808 2080 888 to speak to one of our nurses over our free and confidential support line.
We’re so sorry to hear how you’ve been feeling since your diagnosis, however this is totally understandable. Do keep your treating team updated on how you coping and feeling as it’s important they’re aware so they know how best to support you. They may be able to refer you to support within the hospital if this might be useful for you. If you have a specialist nurse, you could perhaps ask for a 1:1 appointment or telephone call to talk through things with them too if you think that would be beneficial as they will have access to your medical notes.
It can be difficult at times for people to speak with family members about their diagnosis, but please be kind to yourself, we have a section of our website for loved ones of those diagnosed, which you might want to send on to them if you think that would be useful - My friend or family member has blood cancer | Blood Cancer UK.
Also, in case it is helpful to have to refer to, our colleagues at Cancer Research UK have a page on DRD treatment that discusses how this works, cycles, tests and side effects. Information about this can be found here Daratumumab, lenalidomide and dexamethasone (DRD) | Cancer Research UK. Everyone responds differently to treatment so it is hard to determine how you may feel, but perhaps keeping a diary can help and looping in with your team to let them know how you are getting on will also be useful to help you monitor and track any side effects as well as to update them on how you are doing so that they can aim to support you as best they can.
Hi @Dee123.
I can see you have had great replies from @Erica and @Emma_BloodCancerUK.
Of course you are feeling all those things. It’s all happened so quickly with no time to process things before you start treatment again.
It may be helpful to give the helpline a call before Wednesday?
You’ll be in my thoughts and when you are ready, please let us know how you are doing. And let your family look after you. You would do the same for them
Thank you. What a reaction I had to the treatment. I could hardly breathe and was really scared. This lasted about 30-40 mins then it was ok. Is this normal? No one at the hospital explained anything to me. Was really disappointed with the chemo unit staff to be honest.
Hello @Dee123,
Gosh I am so sorry you had such a terrible reaction, this can happen with DVD but you are given lots of pre-medications to try and prevent this, were the team able to explain anything to you about this and what they might do differently next time?
We would be very happy to talk through this with you if you wanted to call us? Our number is 0808 2080 888.
Take good care and rest up,
Heidi J (Support Services Nurse)
I haven’t spoken to them. I rang the dept straight away but no reply so ended up speaking to someone at the 24 hour helpline. It was them that told me to get an ambulance.
As I say, was quite disappointed with the chemo unit staff. It was my first time. I had no idea what to expect.
I am so sorry this happened, what an awful shock. When you go for your next treatment
(? tomorrow) please let them know exactly what happened, they will need to plan how they approach this weeks treatment to prevent any further reaction. I hope it is much smoother for you this week.
Best Wishes,
Heidi J (Support Services Nurse)
Oh @Dee123 Yes, that really does sound scary.
Please do tell your medical team about your experience and how you felt and how scary it was for you.
Please do let us know how you get on.
Be very kind to yourself and really look after yourself
I had my 2nd treatment yesterday. I was given I/v antihistamine prior to the dara. Has worked a treat. No side effects at all so far. Am super pleased.
Good morning @Dee123,
I am so pleased yesterday went well, I am sure that was a huge relief. Have a good rest today and keep us updated on how things go.
Best Wishes,
Heidi J (Support Services Nurse)
Thanks Heidi. It’s all still so new to me. I’m sure once I start to see some positive results from the treatments it’ll encourage me to feel more optimistic.
