March 17th, 2017 by Janine
Music: Where is the love (Black eyed peas), Beautiful (Christine Aguilera) Living On a prayer Bon Jovi, Me – I’m killing killing cancer, sorry good cells
Full dose Chemo started (only half last week)
Glucose test: ‘Brilliant’ according to Dr L; normal=awesome pancreas
Dr L’s comment ‘I’m very happy’ with the way things are going
Blood summary (for normal levels see Chemo Wk 1 post):
||Yes, up from Low
|Kappa light chain
|Lamba light chain
||No, as expected (AE)
I thought I had it handled: the meds, the new schedule of hospital appointments, new food regime, my admin. I’d written everything down: what to take, when; how to take it (with or without food, with or without gloves, morning, midday, night, once, twice or more times a day), listed things to get done, was recording my temperature twice daily and all experienced symptoms. I thought I was keeping on top of it all. I was feeling clever and calm. I was. Then I wasn’t. I felt angry and then a little stupid. I had missed a key drug.
It was Tuesday morning, I was waiting for my cannula to be inserted. A light bulb moment and then a wee bit of panic; I realised I had not taken cyclophosphamide yesterday. Why didn’t the nurse tell me to take it? Was I meant to take it as soon as my consultant gave the go ahead for Chemo? Yes I think I was, yet the instructions were to bring the drug up to hospital so I had expected the clinical team or nurse to tell me when to take it. Oh what a f**k up. I explained what had happened to the Nurse and she said there is no mention of Cyclophosphamide on her medication chart. Later she mentions there is usually a check box for that kind of thing. How much of a calamity was this? It’s a strict clinical trial protocol isn’t it? What happens If I don’t take the right med on the right day?
Nurse M had given me a table chart mapping out which med needed to be taken each day though it doesn’t account for daily frequency nor all of the supplements I’m having to take as well so I had written out a Janine version. Ha! Obviously I’m not quite as on top of everything after all. I spent the end of Chemo day 4 waiting for my consultant to advise the nurses what happens to me now and if and when I should take Cyclo. Dr L comes by about 4pm: “don’t panic, it’s fine, of all the meds to miss, this one was probably best”. He is such a sweetie and seems to say all the right things.
My heart rate (up to 90 bpm) began to return to normal. Dr L suggested I don’t take Cyclo straight away: “it’ll keep you up all night, take it in the morning if you don’t have an infection, fever or high temperature”. Phew. Not a complete disaster then. We talked about the email he’ll send, about it being ok for me to travel (hmmm, hoped he still trusted me to take the meds on time while I’m away) and he checks again that I WILL be back for the start of cycle two. I reassured him I would be.
I felt awesome on Wednesday; the sun was out drenching the garden, I felt pain free and full of energy. I thought; “This is good! I even feel a bit high”. I wondered what was causing the euphoria. Drugs, no doubt. Relief, probably.
A superb short piece of consulting work through a team I wanted to work with had been offered but the start date was yet to be confirmed. Wednesday ended up being a bonus day as I had thought I would be working. It was a cracker of a day. I sat in the garden with S, ate well, relaxed and revelled in not having to race off to a hospital appointment or have saline, glucose and meds shoved into my arm. However, the next door neighbour’s kitten, T, was driving me bonkers.
Psychology – Behavioural Training
I’m chilled out in the sun then out of the corner of my eye, on the garden wall, a flash of white and then another and then a flash of black and white; two paws and a head. A Kilroy moment. Here comes T. He must be dangling down on the other side of the wall, its so cute and funny. I sigh and laugh simultaneously knowing what is coming. I am trying to complete behavioural training with T as he and our cat, Mason, get on well and race around each others’ gardens but T is like a V8 4WD diesel vehicle (a right guzzler); he’s all paws and stomach, bounding around and eating everything in sight.
We like to leave our back door open when we are around. I was trying to enjoy the sun yet train T to stay in the garden and not go into the house (with our neighbour’s permission). The key to any behavioural training is consistency so I told myself I won’t have to do this forever and he’ll get it eventually. I took a deep breath and for the next two hours felt like a yoyo or space ball; up down, up down, up, in out, in out, chase, hiss, “back away from the cat food T”…eventually, though mostly when I WAS looking, he lay down outside, a foot from the door, making a pathetic though cute meowing sound. It could have been a request for Mase to go out to play though frankly, I suspect it was a master manipulator tugging heart strings saying “come on, you love me really, you don’t really mind if I eat you out of house and home”.
Metaphor for Crisis
The up and down with T seemed to be the metaphor for my rollercoaster week. Next thing I know its 3am, I’m awake with an awful thought. It’s always been in my head that we are flying back on the 2nd but I had better check. Sh*t, sh*t and triple sh*t. Yes we fly on the 2nd but we don’t get back in to London until the midday on the 3rd. This can not be happening. The 3rd is a Chemo day and midday does not allow enough time to get blood tests done, consultant review, pharmacy to make up the drug and to get the chemo done. Now what? I scramble around trying to see if the flight can be changed and sure enough it can – if you have a cool £6000. No I don’t think so. I check the site again; hold on, they are still showing as having economy flights back from Calgary as available, albeit for the full price around £900-1000 (a whole flight price again on top of what we have already paid). While not pleasant, it was an option. Si woke and asked me what was going on. I told him and he said “leave it to me”.
Si rang me later saying they can get us back on the 31st for a change fee. I said I can stomach losing one day of our holiday but two is too much; there must be another way and why can’t we get the flight that is showing on the website. Eventually Si gets it sorted and we fly back a day earlier, arriving in time for Chemo the next day. We pay an extra £300 plus for the change instead of £1000 thank goodness though it is for the privilege of flying back economy instead of the premier economy seats we had pre-paid for. I have my first “this is unfair” melt down. Though with the crisis averted I start feeling normal again. I had not been looking forward to saying to Dr L that I’d stuffed up again.
I’d been chatting away to Dr L by email in the evenings and early hours about various little things that needed sorting (who’d of thought an NHS service would include this?) and he pointed out the importance of getting more sleep. Apparently afternoon naps have been proven to “prolong survival”. With the week’s crises thus far overcome, I finally fell into a deep sleep on the couch in front of a random programme, Forensic Detectives (which I secretly like for watching as you don’t have to concentrate; everything is repeated multiple times and it often sends me to sleep).
I wake up with my clever clear and calm possibility renewed and the thought “I have done 4/6 days of Chemo for this month already”. I also wonder if Chemo is tanning me as my bright red cheeks and chest of the morning now looks tanned. Strange, made note to self to ask Dr L about it.
In the mean time, the work start date was still to be confirmed so it looked like Thursday may be free too. Life didn’t wait just because I have cancer or because I was trying to deal with loads of new information and activities; the house insurance renewal turned up, washing still needed doing, bedsheets needed changing…No further crises thankfully.
P.s. S nicknamed my intravenous drip holder C3PO so I gave him some headwear for his trips to the loo…and it kept my scarf clean while in the loo!
Images: Stephanie Kemp and with Nurse Amy’s and T’s parent’s permission
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Behavioural Training, Cancer, Chemotherapy, Crises and Stress, Cyclophosphamide, Missed Medication, Myeloma, Psychology
February 20th, 2017 by Janine
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