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 trials2,3.
- 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
4 CARDAMON Patient Information Sheet; Kings College Hospital; version 4.0; 07Nov16
Copy Editor: Stephanie Kemp
Image: Photo by Angelo Pantazis on Unsplash
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Cancer, Carfilzomib, Chemotherapy, Choice Supportive Bias, Chronic Illness, Clinical Trial, Cognitive Bias, Cyclophosphamide, Dexamethazone, KCD, Myeloma, Para Protein, Post-Purchase Rationalisation, Response to Chemotherapy, Stem Cell Harvest, Stem Cell Transplant, Survival Rates, Treatment, Treatment options, Zometa
Informing your parents on your 48th birthday that you have blood and bone cancer is not a common or pleasant thing to do. In fact, it has been the hardest thing to do in this whole journey so far: let family and friends know, see and hear their pain, their sadness, their shock. Sharing my diagnosis and curtailed life expectancy with people whom I love was and is cutting to the bone.
Trying to work out when to tell and who to tell is a challenge too. I had to seek advice from the wonderful J who had recently experienced this dilemma. In the end, Hubby and I agreed we would find out more information first and did as much of that as possible over the 11th to 13th February. Then we planned to tell my parents first, followed by his parents and then my NZ besties who have known me since I was 18 years old: who I knew I could count on to cope (in their different ways), to be hopeful, practical, support me, Hubby and each other.
I realised I needed to tell people quickly as it is quite hard these days with social media and, when you have the fortune to have good friends, who wish to catch up regularly, to get on with your life if you haven’t told them. I anticipated being less available due to Chemo and recovery, fending off ‘how work was going’ related questions and having to explain why my hair was falling out etc. I just thought no shocks should ensue when I rock up to graduation in July, thinner or fatter (from steroids) and sporting new headwear. Anyway, it’s my style to be upfront about what is going on. Well at least I like to think so.
Also, I recognised I needed support: some now (especially humour) and certainly I am likely to need some later during treatment. Hubby needs support too. So, telling people seemed the right thing to do for me (though I do understand why others might prefer to keep it quiet and wait until treatment has taken place).
My parents who live in New Zealand are amazing people, so generous, kind and often overly considerate of others. They are also inspiring, energetic, wise and well educated; great mentors to others. They were firm with me in many ways when I was growing up, yet open and welcomed questions and debate. My parents ensured I had a diverse range of experiences and chances to pursue hobbies; fantastic holidays in NZ, netball, tennis, scuba, plays, ballet, musicals, art and concerts. I remember going to see Rod Stewart when I was 10 and Charley Pride and the Bolshoi. They have wide music interests. My point is, that for so many reasons I am immensely grateful for my parents and my upbringing. I am fortunate enough to have a great relationship with Mum and Dad, one that only keeps getting better. We have always been super independent and have never lived in each other’s pockets, talking once a month or so and trying to meet in recent years at least once a year. It was especially hard to tell them bad news. Especially this bad news.
Mum cried and had to move away from the Skype call. Her natural empathy for others is huge and so close to the surface, I wasn’t surprised at this reaction but it was hard to view. Dad in his usual stoic, practical in a crisis kind of way, hung in there and asked all the right questions. I did my best to be matter of fact, hopeful and clear. I was churning inside seeing the hurt on their faces. We eventually ended the call so Dad could go and look after Mum. Over the next few weeks it took a bit of convincing them not to jump on a plane immediately (imagine me sending shackles for Mum over the ether!) but in the end, they have been amazing as usual, listened to our needs and I am now very much looking forward to their extended visit later in the year. I am very proud of them and how they are coping.
Telling Hubby’s parents was not really any easier except we spoke over the phone so I didn’t see their faces. It all went a bit wrong initially as they were in the car at the time. When we suggested we wait until they were home they insisted on going ahead but then they didn’t know what was coming. When we explained, the call was stopped and started ten minutes later once they were home. I love my parents-in-law (P and T) and Hubby’s Mum. They have all been very supportive. Being visited by P and T the very next weekend was helpful and in the moment I loved T’s assumption that I would beat the odds.
The weird thing and something I really resented was how many people knew I had Myeloma before I was able and ready to tell my loved ones. My dentist and his receptionist knew because I needed his clearance of not needing any dental work before I could start a bone building drug, the beautician at the hotel we stayed in while taking time away to process all the new information and treatment options knew, when I filled out their questionnaire and she gently announced she would not be able to give me the massage I was craving. Scared of a law suit if something went wrong I suspect. She did give me a lovely pedicure and I found myself reassuring and cheering up her and her manager. Looking after others needs about my cancer was something I learned would become a regular occurrence. One I plan to avoid unless necessary and may come to be rude about as I only have so much bandwidth for looking after others’ needs right now. Sounds selfish but true; though working with a couple of private clients still appeals as it wouldn’t be about my stuff.
I laughed as J had warned me in a funny story about her partner who had told ‘everyone’ about her cancer diagnosis when Hubby came home late one night and confessed. He had shared our new challenge with his manager so he could take some time off to attend tests with me. Then ‘he’d spilled the beans’ over a beer and late night commuter trip following hours of standing on a platform and delayed trains; he’d been frustrated he wasn’t home when we had so much going on. I didn’t resent this; he needed to share but it was weird that people I’d never met and had no affiliation with, knew about my stuff before my good friends knew.
Telling my besties was also a logistical timing issue. On one hand, it was fab as S happened to be visiting from the States with her hubby and his daughter. However, it was our birthday week and I really didn’t want to tell her my news before we had been able to celebrate her birthday. This was tough as it felt like I was lying to her and not able to fully connect or spend as much time with her as I had planned to as I raced off to appointments. It was a total relief to let her know and then Skype with my other besties the next morning. As anticipated they were simply wonderful, reeling but managed well and said all the right things. Soon after I sent an email which was a much easier way of communicating my news to my close UK based friends and other special people in my life all around the world. Deep sigh of relief and a wee bit of fear followed. You never know how these things will land.
While telling others has been extremely hard: telling myself about how many years I am likely to live has been strangely easy. I did want a long life but only if it was filled with quality, mobility, activity and intact cognition. This way, with Myeloma, I strangely feel more in control and have a rapidly growing awareness of just how I might want to live life in periods of remission. Instead of living far off in the future my next five years is firmly in focus. Who I wish to spend it with, how I want to spend it, is a close second in my mind behind successfully managing treatment. I envisage kicking this cancer into outer space for as long as possible if not forever. The way I see it, there is no reason why I can’t be one of the first people to experience Myeloma as a chronic illness with long periods of remission over normal life expectancy, rather than have life limited to 8-10 years with frequent periods of hospital visits and new Chemo regimes. That’s what I’m gunning for and requesting of the Universe. So, you see I still want to be special, but I am being much more specific about, how I wish to be special, when speaking to the Universe.
Illustrations: Sapphire Weerakone
Copy Editor: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Diagnosis Tagged with: Cancer, Chronic Illness, Family, Friends, Myeloma, Sharing bad news, Telling others you have cancer
Oh sh*t, what if our new nephew, baby N arrives on the same day I get diagnosed? Hubby and I agreed that would be awful! My follow up appointment was booked for Friday 10th Feb and we willed the Universe that our Sister-in-law gave birth before then or after then. Any day EXCEPT diagnosis day!
It wasn’t Dr K this time which surprised me. Instead Dr R calmly, again in a matter of fact way, confirmed I had Myeloma. He explained it is incurable yet treatable. I knew from experience that most people do not hear much of the consultation once they have a diagnosis confirmed. Dr R reassured me it was fine to record our conversation and that we would have this conversation a number of times over the next week while I got my head around everything and asked any questions I may have. Specialist Nurse D with the lovely reassuring smile was present also and he was going to be my point of contact throughout. It was nice to meet him straight away. I remember thinking I need to be a strong clear voice for myself without becoming someone nasty or someone I don’t recognise.
Dr R asked me about pain and I struggled to answer, I’ve lived with minor aches, pains and niggles for so long I can’t distinguish when, how long and how bad. I couldn’t think more clearly about this until we were out of the appointment… and remembered I haven’t been able to sleep on my left hand side for ages, one to two years Hubby reckoned, I didn’t realise it was that long. Dr R seemed to expect me to be in more pain as he explained the BM biopsy and pet scan confirmed that there is evidence of bone marrow damage in my left shoulder (ha- my creaking and clicking it that annoyed you so much Hubby!!!), my sternum, my middle back T7 and lower back L5 vertebrae. L5 is the bit Dr B is most worried about – if it deteriorates it can damage my spinal cord (oh yay!). It’s not enough to have sucky cancer, I have to have the risk of paralysis too. Lovely. So nice for Hubby. Didn’t I read somewhere sarcasm is linked to intelligence? Then I am effing intelligent! However there are things to celebrate – my lungs and kidneys are not showing any damage and my anaemia was only slight. All of these can be bad with this condition though most people are twenty years older when they get diagnosed.
Dr R wants me to start treatment asap to get the spinal damage under control which could apparently happen as early as tomorrow (!) so chemo here I come. Treatment choices were either standard care (one set of drugs) or the clinical trial CARDAMON (another set of drugs). I pushed Dr R for a prognosis, I’m quality over quantity kind of gal so wanted to know how much quality I could expect, hope for and create. I heard him say first line care usually buys 3 years (gulp) of remission before relapse and then there are more sequences of drug treatments that buy more (though less than the first) remission time. If treatment is successful I can live for another 8-10 years. SO PRETTY SHIT REALLY. In fact, the median shown in current evidenced based research is 7 years. I asked to be referred to a psychology-oncologist (thinking man I am going need one, not right now but sometime in the future when I feel less chilled about all of this) and he said yes straight away and that there were two working closely with their team.
Support and Due Diligence
I didn’t really react to the prognosis, I still felt strangely calm. Not in denial. Just in the practical project manager zone of doing what needs to be done. Went to Macmillan (awesome charity supporting people living with cancer) at KCH afterwards. I’m so grateful for my little bit of knowledge of this field. I knew of Maggies, drop in centres for people with cancer, their families and those effected by the big C because as an assistant psychologist I had helped lead Mindfulness courses for people in remission (another irony?) and I have raised money for Macmillan in the past. I knew there would be calm, info and friendly people there. T was exactly that and very helpful. I tried on a blond wig for kicks but Hubby wasn’t impressed! I’ve also been talking about money all day – it’s weird but seems to be my fixation – worried about how we are going to get money for stuff…(covering my no income while I’m on Chemo, drug costs if wanting something NHS doesn’t offer, the eventual palliative care costs). Anyway that’s a whole other post.
Spent my birthday and Valentine’s day doing the due diligence of getting second opinions and care options in the private sector. Hubby was fantastic. I’d google the care centres and he’d call them asking for an urgent appointment. He was so awesome because he’d say what their attitude was like on the phone and not just the practicalities; we dismissed some clinics very quickly! The one that was the best responder was the one I knew about already. A friend J had been there for her breast cancer treatment and was positive about the experience. It felt so containing that they had been amazing on the phone and had offered an appointment on Monday morning. Felt even better when Nurse L emailed to confirm straight away and emailed me back later at 8.30pm (on a Friday)!! Not only saying the test results is sent we’re perfect for their needs but saying that she hoped I had enough pain management. Awesome service which continued in the consultation where they endorsed the treatment options offered by KCH and offered another to be tried later. They welcomed my staying in contact and asking any questions as needed. Which I have done and so far no charge has arisen other than for the initial meeting. Safe hands me thinks.
J said all the right things and was beyond supportive. I am intensely grateful to her especially when at this point I need help to make decisions and was yet to let my friends and family know. I was on such a clock for a decision which I wanted to share with them and needed to keep my head clear while I made them which may not have been possible once speaking to all the others that I love.
We had champagne to celebrate catching the Cancer and the parts of me it hadn’t got to yet. Watched a star trek movie, fell asleep during it exhausted and finally went to bed at 1am.
Hubby was very sad, teary, upset, practical, awesome awesome loving and awesome. We are talking about who to tell and when, working it all out. He said such a sweet sweet thing to me, It is unfair, ’You’re one of the kindest people I know’…I cried.
Fortunately the Universe is simply amazing and Baby N arrived on the 9th Feb and we went to see family and Noah on Sunday 12th. My father-in-law (very astute and I love him to bits) mentioned to his wife on their way home that something didn’t quite seem right about Hubby and I though they didn’t think it was about our past difficulties with having our own family. He was on the money of course, as we had just spent two days away from home in a hotel trying to process the prognosis, pouring over all the Myeloma literature we had been given and wrapping our heads around treatment options. Decisions were needed, fast. I remember holding Baby N, thinking he was utterly adorable and that my Sis-in-Law was beautiful and amazing. I also remember thinking my hands have been aching badly all day, I’m holding him very stiffly, god I hope I don’t drop him. I need to hand him over but I can’t yet, a little while longer. One dying young, one amazing arrival. Cycle of life. These were thoughts in my head. I look back on the photos from that day and Hubby and I look happy yet extraordinarily tired. We were so glad that we went though, met everyone and shared that fabulous moment.
So unequivocally, I am now a person living with active (symptomatic) IgG Kappa Multiple Myeloma and produce an abnormal para protein which is normally there but has managed to over excite itself, not die when it should and has now bullied all the other cells out of the place. I have damage throughout my bone including one to my spine that KCH are concerned about and one to my sternum that the private centre is particularly concerned about. Urgent treatment is required so I don’t end up with breathing problems (sternum) or spinal cord compression, paralysis and frankly even earlier DEATH.
I found myself writing letters to friends based overseas in my head, saying ’Don’t come to the funeral, it’s such a long way….’
Copy Editor: Stephanie Kemp
Image: Photo by DAVIDCOHEN on Unsplash
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Diagnosis Tagged with: Anaemia, Blood Cancer, Bone Cancer, Bone Marrow Biopsy, Cancer, CARDAMON, Chemotherapy, Chronic Illness, Clinical Trial, IgG Kappa, Incurable, L5, Myeloma, Para Protein, Private Cancer Care, Prognosis, Relapse, Second Opinion, Spinal Cord Compression, Sternum, Survival Rates, T7, Wig