March 23rd, 2017 by Janine

IMG 1480 225x300 - Chemo Wk 3 - Bloody Business

Music: Fat Boy Slim – Where You Iz (Where you is, is where it’s at, and you can’t beat that with a baseball bat); Far L’amore (awesome dance track from the film The Great Beauty), VCMG Spock.

Medical Update:
Full dose Chemo plus new drug by intravenous Zometa (bone builder)
Follow up e-Coli urine test – all clear
Ferritin (iron) levels improved from slight anaemic to within normal range

Test High/Low/Normal Right Direction?
Total Protein  79 N  YES!
 Albumin  35 N
 Kappa Light Chain
 Lamba Light Chain
 Urea  5.7 N
 Calcium  2.20 N
 White Cells  2.59 L  No, as expected (AE)
 Haemoglobin (Hb.)  111 L  No, AE
 Platelets  243 N
 Neutrophils  1.11 L See-sawing AE


IMG 1476 225x300 - Chemo Wk 3 - Bloody Business

Pin Cushion

Day one this week went pretty smoothly. S came and kept me company and we talked about her trip to Norway over the weekend. By 5pm I was very tired and my back around my weak T7 area (mid back) was sore though not hugely so. My slightly swollen ankles, dry eyes with eyelids sticking to the eyeballs didn’t phase me; eye drops and putting my feet up for a while helped with those. The coconut water added to my water bottles during and post chemo also seemed to prevent the headaches of last week. So, all good.

Day two was a slightly different prospect and once again I needed to find my voice. I’d been awake at 1am, 2.30am, and 3am before eventually getting up at 4.10am. The lack of sleep and waking up soaked through probably reduced my patience and tolerance level for the whole day. The rest of the day had started well; raced up for early blood test at 7.30, raced to get the lovely K to work his magic on my hair (why not have perfect hair for the last day of chemo on your first cycle!) and managed to get back on time for noon and my chemo appointment. Then the fun and games began.

A nurse I hadn’t worked with before tried to put in the cannula. She had trouble finding a vein and I know that can happen as Chemo goes on though I was somewhat sceptical at this stage. My arm and hands were warm so cold wasn’t the culprit. I thought about asking Nurse L to come and do it but thought I should give this new Nurse a go. She was sweet yet apologetic for everything and seemed slightly clumsy. A bad day? After two goes of pushing a needle into me only for it to be a bit painful and no vein was found, I asked if Nurse L could do it. To her credit the first Nurse apologised again and explained it was policy for exactly that to happen, that after two attempts to insert a cannula a different Nurse is asked to try. Interesting, that had not happened last week with another Nurse, G, who had rooted around until he found a vein on the third attempt. I would not let that happen again.

Nurse L came over and using the back of my arm got the cannula in first time, pain free. Got to love that woman. Next, when the original Nurse came to change one of the intravenous bags over, the cannula-to-bag connection broke (this had never happened before). Once again to her credit she apologised and explained saying the line may still have worked but to be safe she had replaced the whole line (fortunately the cannula could stay in place). I made a note to ask for Nurse L, Amy or M next time.


How often do you look at your poo or the paper you wipe your bum with? Who has time? Well I seem to be doing this a bit more, fortunately or unfortunately depending on your point of view. This week at about 5pm on day two, I spotted blood, quite a lot of bright blood on the paper and then in my stool. This concerned me, I so didn’t want to have an infection that would stop me doing this trip of a lifetime to Canada. I decided to see if it stuck around or went away. My temperature was fine so I didn’t panic immediately.

Evening snooze and Steroids were working their magic so I was still awake most of the night and eventually went to bed at 4.30am. Got up at 8am. Temperature was still fine but blood was still there. Felt cold and shivery flu like muscle ache symptoms but I’d been warned this might happen thanks to the Zometa so no panic there and felt better by 10am. Finally called the on-call Haematology Registrar at Kings and they suggested a watch and wait approach too so all fine. The blood had stoped after another day.

That may be because my body had bigger fish to fry; like killing cancer and hey maybe some nasty cancer cells went out with the blood. Now that was a nice thought. Ha, here you go nasties – ejected from Janine’s body forthwith, never to return, thank you! Die. Die. Die. I started singing my little ditty; “I’m killing cancer cells and saying sorry to the good cells that have to go with them”. It always cheers me up though I’m getting sick of the Nashville twang version. Might try rapping it next.

Extra supplies and tips for travel

Because my immunity is lower than usual I had been emailing and speaking to Dr L about how to look after myself while travelling and away. He sorted a prescription with some back up alternative antibiotics in case I got an infection and suggested I got loperamide in case of diarrhoea, paracetamol and also plasters to cover any small wounds. Sorted.

We also talked about masks. He explained that wearing a mask was very considerate of me regarding others though wouldn’t help me much. When someone sneezes or coughs and shares germs, it’s the tiny molecules at the end of the spray that get everyone and they are small enough to pass through a mask. I said I’d double up the masks. Dr L laughed and said “I’d rather you could breath!”. He did make some suggestions about how to adjust the aircon on the plane if I did find myself unable to move away from a germy splutterer which were helpful. He insisted the main thing was that I didn’t get cold, or pick up a cold or virus and he emphasised that I would be more vulnerable to this happening as the Chemo worked its way around my immune system. I tried to reassure him that I would take every precaution possible.

We said goodbye to S. It was time. Her hubby was missing her badly and his birthday was imminent. It was so good to have her here and she helped make the first month of Chemo bearable. Thank you Universe for aligning her visit with my need for extra special bestie help and support. Thank you S for making the longer stay happen. D, thanks for sharing her!

Psychology – Asking for Help

Asking for help is a strength. It is not a weakness. Asking for help does not mean you are weak or needy or less than; it means you are human. People need help to achieve big goals in life. The tennis player doesn’t reach his local team champs or the final of Wimbledon without the support of the person who had taught him/her to play tennis in the first place or the person who continues to help him/her play week in and week out, now; a coach, a tennis racquet stringer, an opponent. Many, many people help contribute to one person’s goals in life.

When you have a difficulty, big or small, asking for help is a powerful message and gift for others as well as for yourself. It lets people know they can contribute to you and that it is also OK for them to ask for help when they need it. You will not burden them; you can ask for help in a very specific way, with clarity about what you need and in a way that leaves them informed and free to choose. If they experience a feeling of burden, that is not your concern, it is their experience, and one they would need to manage by finding their boundaries and voicing them (in the same way you could if you had said yes to helping someone).

If you are open and honest with the people you are asking for help from, and clear about how you would like them to help, then it is up to them to manage themselves if they say yes to helping. So ask for help, especially if you are going through a complex health challenge like Cancer. You can ask friends, neighbours, family, medical professionals, your GP; ask to be referred to a psychologist, nutritionist, physiotherapist if you feel that would help you meet a need.

I have asked a friend to stay longer, to carry my urine, to research nutrition. I have asked my husband to help me to speak to my parents about the best time for them to visit and asked him to help me stick to who I want to be through this stage of the Cancer process. I have asked my consultant to answer seven questions at the beginning of each week of Chemo. I have asked the MacmIllan team for help getting referrals to learn about financial entitlements, access to massage and for a place to sleep between tests. I have asked friends to leave any sadness at the door. I have asked neighbours for referrals to a nutrition therapist and to take in parcels of books and food. I have asked my consultant for a referral to a psychologist and a dietician. I have asked friends to meet, to not meet, to forgive me if I’m not quick to respond to emails.

I HAVE ASKED FOR HELP.  HELP has been forthcoming from every angle. People often want to help and you can make it easy for them by letting them know what help you need. My asking has not been met with annoyance or judgement but with thanks and love. If you ask people to help in ways that you know play to their strengths then you make it even easier for people to help you though don’t let that stop you either, just ask. If they can’t help or don’t know how to help in the way you are requesting, it is up to them to say No or suggest an alternative way of helping that may meet your need and match what they can offer.

The right people around you, at the right time, with the right help for you and your needs, can be a significant and positive part of the healing process, so why should you miss out on that?

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Images: Stephanie Kemp and Nurse L

Posted in Chemotherapy for Myeloma, Psychology for Cancer, Symptoms and Side Effects Tagged with: , , , , , ,

Couch angelo pantazis 237143 unsplash - Treatment – We need to know NOW.
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:

  1. There is some evidence (though better and more research is needed) that people have better outcomes when they participate in clinical trials2,3.
  2. 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.
  3. 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.
  4. I will be monitored like a hawk if I sign up to the trial so reactions and adjustments are likely to be more timely.
  5. 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 choicesupportive 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.



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  All rights reserved.

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: , , , , , , , , , , , , , , , , , , ,