Hi everyone,
I hope you are all in good health.
My dad, who is in his eighties, was diagnosed with Multiple Myeloma last week. The haematologist has recommended induction chemotherapy with lenalidomide, dexamethasone, and cyclophosphamide, and has given us some time to think about things. It appears this combination is approved by NICE.
After doing a bit of background reading - textbooks and medical journals etc - I’ve come across information to suggest that triple therapy with bortezomib, lenalidomide, and dexamethasone (VRd) is achieving better outcomes when compared to other regimens in newly diagnosed patients. This combination isn’t approved by NICE.
Does anyone have any experience of VRd on the NHS or indeed privately? Are any NHS hospitals offering this combination?
Therapy hasn’t started yet, and we are due to see the haematologist shortly. Any advice would be greatly appreciated. Obviously, just want the best for my dad…
Thanks in advance and stay safe.
Hi @Concerned44 I am so glad you have found us and I think you just wanting the best for your dad says it all,
You must all be in shock and you have entered this parallel universe that speaks a foreign medical language, but perhaps you already have some medical knowledge.
I cannot help you with your medical queries, but I certainly can relate to the shock and racing fears, emotions and thoughts that you are probably all having, just reading your post takes me back to the day I was diagnosed 17 yrs ago, I can replay it like a vivid video now.
What it might be worth you all doing is to write down all your questions, fears, thoughts, feelings, medical history, symptoms, allergies, practicalities etc so you cover all these issues with the consultant.
There must be a reason why VRd is not NICE approved and I expect the consultant can answer this for you.
Your dad is so lucky to have such a diligent, caring person as you.
We are here to support you and your dad and the Blood Cancer UK support line is there for you if you need to talk.
Be kind to yourselves and please keep posting how you are getting on.
Hi @Concerned44, we’re sorry to hear that your dad has been diagnosed with Multiple Myeloma, we can only imagine what you both must be going through and feeling. You have can come to the right place, the community forum is such a supportive space. As mentioned by Erica, there will be a reason why particular medication or treatment haven’t been approved by NICE. @Concerned44 , has there been any mention of clinical trials by the consultant? You may want to explore with the consultant clinical trials that your dad maybe able to access if he fits the criteria. You can find out more information on Clinical Trials on our website here: Clinical trials | Blood Cancer UK.
Please do reach out to the support service team, if we can be of any further advice and support. We are always here for you and your dad: Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes
Bav
Hi @Erica,
I hope you are well.
Many thanks for your kind words and the excellent advice contained within your message. Thanks also for your suggestion re: why VRd is not NICE approved - a question worth pursuing.
I wish you continued good health.
All the very best.
Hi @Bav.BloodCancerUK,
I hope you are well.
Thanks for the message of support. It is very much appreciated. Thanks also for your useful suggestion re: clinical trials, and the links for further help and support.
All the very best.
How are things going @Concerned44 ?
This forum and the Blood Cancer UK support line are here for you.
Look after yourselves