Treatment – We need to know NOW.

Most people take more time over choosing a new sofa or hairstyle than I was given to decide on my treatment pathway for Myeloma Cancer. There was no time to waste; my back vertebrae were in danger of fracturing and causing cord compression so treatment needed to start asap. I seal my fate within the week, a time frame Dr R and I could live with. I frantically researched global treatment options versus UK treatment options, NHS versus private care, compared treatment side effects, managed queries in phone calls with Dr R in the evenings, spoke to experts, trawled the internet and discussed pros and cons lists with Hubby.

I had a flash of realisation that no one could make this choice except me. All the other big choices in life recently had been joint decisions; which house to buy, whether to move to Cambridge, when to move back to London, whether we could afford for me to start a business, whether to get a cat, how each clinical psychology course could work for us if I was offered a place. Joint decisions, because they impacted both of us.

Yet, here was the decision that could turn both of our lives completely upside down and I ultimately had to make it alone. A decision impacting my health, my body and what I was going to let someone else do to it. What if I chose the wrong thing and I shortened my life unnecessarily? What if I chose something that turned out to have gruesome side effects for me? What burden was my choice going to cause for Hubby? How long will it be before I am in excruciating pain, breaking bones left, right and centre, paralysed or need full time care?

Pause, breath. I remind myself that survival rates in myeloma are increasing at one of the fastest paces among all cancer types in the UK¹. Pause. Breath.

In the end four things kept zooming around my head:

There is some evidence (though better and more research is needed) that people have better outcomes when they participate in clinical trials^2,3.
Standard care involves Thalidomide. I know it has improved since the old days but the side effects can still be nasty and I just don’t like the sound of it.
The main trial drug Carfilzomib has had great results for people at relapse stage and it and its side kick Cyclophosphamide have been much better tolerated than Thalidomide.
I will be monitored like a hawk if I sign up to the trial so reactions and adjustments are likely to be more timely.
I can always withdraw if I feel the trial is no longer serving me and move to standard care. I don’t want to withdraw yet I can, if I feel it’s necessary.

You guessed it, in the end I chose the trial. It’s called CARDAMON and is being overseen by a partnership between University College London (UCL), Cancer Research UK and Amgen Ltd (Pharmaceutical company). Participant recruitment is taking place at UCL and Kings College Hospital (KCH) and several other UK hospitals.

So, what will be done to my body and its overzealous Myeloma para proteins?

For four months, in one month cycles, I will receive a chemotherapy cocktail of three drugs nicknamed KCD. KCD comprises of:

Carfilzomib (Kyprolis)^4,5. This has been used to treat over 4000 myeloma patients world-wide with both relapsed and newly diagnosed myeloma, is licensed for use in the US and approved by the Food and Drug administration (FDA) but is yet to be approved in the UK, hence the trial. It is a proteasome inhibitor that prevents breakdown of abnormal proteins in cancer cells, causing the cells to die. It has only rarely been reported to be linked with the side effect of peripheral neuropathy (pins/needles/numbness in extremities) which can be painful and which has been associated with the drug used in standard care, Velcade (Bortezomib). I will get Carfilzomib by intravenous infusion, through a cannula in my vein on 6 days out of the month. Doesn’t sound so bad…

Cyclophosphamide (Cyclo)⁶. This drug belongs to a group of drugs called alkylating agents. It works by sticking to one of the cancer cell’s DNA strands. DNA is the genetic code that is in the heart of all animal and plant cells. It controls everything the cell does. The cell cannot then divide into 2 new cells. I will get Cyclo orally by tablets on 3 days out of the month. Doesn’t sound so bad…

Dexamethasone (Dex)⁷. This is a strong steroid that can suppress inflammation and the immune response, kills cancer cells and usually induces a better response to the other chemotherapy drugs than when chemotherapy is used alone. I will get Dex orally by tablets on 4 days out of the month. Doesn’t sound so bad…

After three weeks in the month of going into hospital every Monday and Tuesday for the above, I get a week off the KCD and don’t have to go to hospital.

I do though have to take a bunch of other meds too, one to protect my kidneys, another to prevent/manage nausea, another to stop a virus outbreak, an antibiotic to prevent infection. These continue during the non-chemo, no-hospital week.

I’ll also start another drug called Zometa⁸, a biophosphanate with good evidence that it reduces bone loss, fractures and helps to build bones. I will get Zometa by intravenous infusion, through a cannula in my vein on the same day as getting Carfilzomib I think. I’m yet to understand how often this happens.

After four months, my response to the Chemo will be assessed and if my Myeloma para protein level has dropped by 50% or more, the Chemo will be considered a success.

I will then be scheduled for a heavy-duty med to induce stem cell production ahead of stem cell collection.

After recovering from the stem cell harvest, I will then be randomised to either the;

branch of the trial that receives an autologous stem cell transplant (ASCT; meaning using my own harvested cells) in the same way I would have received one if I had chosen standard care or
I will go into the branch that receives a further four months of the KCD cocktail

After this, participants in both branches of the trial receive maintenance medication.

So, what is hoped for from all this medication? Short term, the hope is that the standard care response of a minimum of a three-year remission is achieved and for the patients in the continued KCD arm that this remission period is achieved without having to undergo an invasive stem cell transplant. Longer term, the aim is that the treatments, even within the three years of my own remission, will have moved on so quickly (there are already exciting drugs coming down the line in trials) that Myeloma moves from an incurable illness to a chronic illness. A stem cell transplant would then become the final defense at the later stages of the illness.

If this all a lot to take in, I get it. I thought so too and I’m still getting my head around it all. There is a massive new language set that goes with moving in this world of cancer and Myeloma.

Have I done the right thing? I hope so. I feel that I have, with the research and time in which I had to make the decision. Psychological cognitive science theory purports that usually you will choose your choice. It is called choice–supportive bias or post-purchase rationalization⁹. It is the tendency to retroactively ascribe positive attributes to an option one has selected and it’s a cognitive bias. Therefore, I am highly likely to have a cognitive bias about my decision to choose the trial because not to do so would undermine my choice…and make it much harder to believe the trial treatment will be successful. I usually try to avoid or at least be cognisant to my own biases. In this case, I fully own and embrace my bias about my decision to go with CARDAMON. BRING IT ON!

Acknowledgements and References:

¹Myeloma UK. www.myelomauk.org

²https://academic.oup.com/annonc/article/22/Suppl_7/vii10/214151/How-may-clinical-research-improve-healthcare

³https://academic.oup.com/annonc/article/22/Suppl_7/vii2/214043/The-impact-of-the-process-of-clinical-research-on

⁴CARDAMON Patient Information Sheet; Kings College Hospital; version 4.0; 07Nov16

⁵https://www.themmrf.org/multiple-myeloma-knowledge-center/myeloma-drugs-guide/kyprolis/

⁶http://www.myelomabeacon.com/resources/2008/10/15/cyclophosphamide/

⁷http://www.myelomabeacon.com/resources/2008/10/15/dexamethasone/

⁸http://www.myelomabeacon.com/news/2010/06/22/zometa-increases-overall-survival-and-slows-bone-disease-in-multiple-myeloma-patients-asco-2010/

⁹http://changingminds.org/explanations/theories/choice-supportive_bias.htm

Copy Editor: Stephanie Kemp

Image: Photo by Angelo Pantazis on Unsplash