Carfilzomib and Cytoxan

Well, the daratumumab and pomalyst train has left the station without me.  My doctor decided that it wasn’t helping me anymore, so I’ve moved on. A few weeks ago I started carfilzomib (Kyprolis) and cyclophosphamide (Cytoxan).  I also have 20 mg of dexamethasone every week. I have carfilzomib on Thursdays and Fridays and Cytoxan only …

Life outside of Treatment

I’ve been a bit quiet on here the last week, largely for two reasons. We’ve been dealing with my dad after his fall last month, and also, there’s been little change or reason to write much about my treatment.

The last week has been a bit of an eye opener into the gap in care for the elderly. For those that don’t know, my dad has alzheimers (still not really sure at what level) as well as having had his fall and therefore, after a lot of thought and consideration, it was decided that he needed full time care of some sort. This is all despite the fact he’s done so well since he fell, breaking his thigh. His care in Oxford has been pretty amazing in the main. They (with our support I’d like to think!), have managed to get him to a place I didn’t think we’d reach when I saw him a month ago. I honestly thought I’d lost my dad.

But now, he is walking (albeit with sticks and a frame), can occasionally have coherent conversations, and is smiling with the twinkle in his eye that I remember as ‘my dad’.

However, it seems that there is a big gap for those people who are physically recovering, but perhaps require a bit more support to ensure that they aren’t a danger to themselves when they leave the hospital. We’ve had to start thinking about his move out of the hospital this week and were quite staggered to see that they might send him out with only one physio session a week, when he was on 7 sessions. For a man that was improving daily, it felt odd not to at least stagger the physio to try to reduce the chances of him having a serious fall once he was out.

Anyway, we’ve realised that sadly we can’t change that outcome, and luckily, as a family, we’re able to ensure that he can continue to have physio even if we have to arrange it. I just feel for those that can’t, or worse still, don’t realise that they should be. There’s definitely a big gap where those that are mentally sound, seem to slip slightly through the gap. It’s been an exhausting week, trying to work out where dad is best to go now, and how to deal with this gap in care, but hopefully we are nearly there and we can settle dad down.

I have to say that whilst it’s all been going on, I probably haven’t really been looking after myself very well, and as a consequence, I haven’t had a brilliant week with headaches and exhaustion. Treatment has all gone fine in general and my consultant is really pleased with my progress to date. We saw him on Thursday and he basically was all smiles. He did try and ready me for the fact that I may see a plateau at some point and I wonder if this was because my numbers went down less the last time than the first time. But I won’t think too much about that!

Paraprotein Results:

  • At start – 21.6
  • After 1 week: 16.6
  • After 2 weeks: 14.2

I’ve now had 4 sets of treatment, so there’s a chance that my numbers are even lower without us knowing, so that’s good. It looks like I’ve got another 6 weeks of having my infusions weekly, and then I will be able to drop them to every 3 weeks. That’ll be lovely as at the moment I only have one or two days a week where I’m not exhausted or feeling weird and wonderful…hopefully once it goes to tri-weekly, I’ll get the odd week of being able to enjoy life a bit more. At the moment I can’t even enjoy a glass of wine (which for those of you who know me, will know is a BIG deal!)

At the moment I’m not ill as such so I really shouldn’t complain. I have been having headaches for the past few days, but I think that’s been due to my dad too, so I’m hoping that these will reduce this week. I’m definitely getting the start of my neuropathy back too. This often comes from the velcade that I have as an injection and I’m getting the spongy feeling face, hands and toes – it’s hard to explain in words but so long as it doesn’t turn into the more painful form of neuropathy, I really won’t be moaning. And I’m exhausted.

The main reason is the Dex which I’ve talked about before. My consultant is happy to change it but actually, after the first week, I’ve managed it much much better. I don’t sleep on the first two nights, and the third night isn’t great, but all in all, I’ve now got my moods in check for a lot of it. The kids know I might be a bit more snappy or sad than usual, but in general, I’m trying very hard. I don’t want to change the dose unless it becomes manageable, just in case it impacts on how much the other drugs work!!

But the great news is my consultant is onside, at the moment, for us to consider going on holiday in the October half-term. It looks like it might even fall in-between one of my 3 week appointments which would be amazing. He won’t commit until our next monthly appointment at the end of September, but if things are good then, and I’m still handling the treatment well, we might be able to start looking for somewhere hot for October which would be amazing!

I’d also like to just say thank you at this point for all the lovely support and care we’ve had from family and friends over this first month. It’s hard to explain how starting on chemotherapy, and not knowing whether it will work or not, impacts you emotionally. It’s been a really hard time for Nick, me and the kids no matter how much of a grin I try to put on my face! But we’ve had so many lovely messages of support, cards, flowers and gifts, all of which help us to keep smiling along this long journey ahead of us. So thank you….you all know who you are! x

DVD – Day 8

So I’m back into hospital today for the next tranche of Darathumabub, Dex and Velcade. It should be a much quicker experience this week and whilst last week was two days of 9 hours, this week sounds like it’ll just be one day and that whilst there’s the usual hours of hospital ‘waiting around’, the actual infusion should only take around 3 hours. I’m assuming that won’t lead to extra symptoms, but will know later I suppose!

In terms of the ‘Dex effect’, last week calmed down a little after my last post. I was still a bit more emotional than normal, but felt so much more like my normal self which was such a relief. I managed to do some gardening on Saturday (with everyone checking in every 30 minutes asking if I was overdoing it!), and went to visit my dad on Sunday which I was so relieved to do.

It’s been hard knowing that he’s in hospital at a time that I can’t be there to support him. He’s had the operation on his leg and that went really well, but he is very confused, can’t really put a sentence together any more, and most worryingly for me, doesn’t seem to have any drive to get up and walking. They think he could walk again if we can get him past the mental barrier / pain that he currently has stopping him. Interestingly, they think that his dementia may be influencing the pain and that whilst healthy patients would fight through the pain, when you have dementia, apparently it can stop you from being able to do this so well. The next week will probably be a big one in terms of how things progress or otherwise.

So I’m trying to get myself ready for the week to come. I think I might take myself off social media from tomorrow night for a couple of days while I deal with the potential dex side effects but I need to find a way to make sure I’m good for the weekend. Rebecca is doing her 3 Peaks to raise money for her to go to Romania.

I’m so proud of her as she hates walking so it really is a big thing for her. She’s got to raise over £1800 so hopefully this will help her a lot. But it means I really want to be there to support her. I have admitted to myself that walking 26 miles up and down mountains, probably isn’t the most sensible thing I could be doing but I do want to be able to support by taking them, collecting them and maybe doing some of the easier walking bits alongside them. So, keep your fingers and toes crossed that the end of this week is as good as the end of last week so that I can do all of that…..oh and I need to visit my dad on Friday too so that I fit that in!

Right, I’d better go and do some work now while I’m waiting for the dara to arrive….

Dex f**king Dex

I would apologise for my language but genuinely I now understand what I didn’t last time I had treatment. People used to talk about the Dex effect and it turning people into a Jekyll and Hyde character – I never suffered and never really got it. A funny tasting mouth but that was it.

Oh my god is it different this time. I’m only on day 3 and I’ve already experienced every level of emotion possible, including the most massive anger and frustration. Now, admitting this, does not mean that the reasons for my anger are unfounded, but perhaps the way I’m expressing them and the depth to which I feel them are.

I’d like to scream at certain people. I’m not particularly nice to the kids even when they’re not behaving any differently to normal. Nick has just about got away with everything but I don’t know how long that will last…I think he might just hide away if he’s got any sense!!

I know we’ve got more going on than a lot of people at the moment but life has suddenly seemed to swamp me and other peoples selfishness really grates. Not only am I dealing with starting chemo and all that entails, my dad is about to head into the need for a lot more care after his fall and operation and I don’t know how I can help properly when he lives 90 minutes away. Our builders are progressing but they’re now likely to be in for at least half a week longer than we’d wanted. And that’s before we can try and find a decorator who we can trust to help. My work continues (as I want it to to be able to stay sane and need the money). The kids are on summer holidays while all of this goes on and are already struggling with the fact that things are different and more is needed from them. My back still hurts and to too it all I also have pain from sleeping badly. Thank god the sickness and diarrhoea that the dog had yesterday seems to have subsided.

I’ll leave it at that. Bah humbug that I am. But I needed to vent. Anyone have any idea how long this Dex effect lasts after you’ve taken the tablets? I’m hoping tomorrow will be a better and more positive day.

Myeloma Beatdown

Blogging again.

June 26, 2019.

After a lovely, easy, three-year ride on a two-drug myeloma
regimen, my right shoulder was hurting and a PET scan showed a lesion (a
collection of myeloma cells showing bright red) in my right scapula.
M-spike and IgG hadn’t changed, but Lambda Light Chains had more than doubled.
The myeloma was back. It never gives up.

My Mayo doctor ordered radiation treatment of that lesion, and added
dexamethasone to the two-drug therapy. Now, a month later, the ten
radiation treatments are complete and I’m taking the dex. Last week’s
blood test showed Lambda light chains back down to normal again, a very
good sign.

Another PET scan and doctor’s appointment in a couple of months will tell us whether that scapula
really is better. I think it is, because my shoulder doesn’t hurt any more. It itches a little, because the radiation lightly toasted the skin over the scapula, but I don’t mind and it will heal.

A lesson learned:  A lesion formed but neither M-Spike nor IgG went up, which means that at least some of my myeloma is “nonsecretory” (doesn’t secrete monoclonal proteins).  Therefore we’ll have to pay more attention to Lambda Light Chains. Maybe I’ll need more PET scans too?  I wonder if there’s a limit on those these days. Checking Lambda Light Chains is just a simple blood draw for a lab test, though it’s nowhere near as comprehensive as a PET.

…Go – DVD therapy begins! Week one

So after months of talking about this I’m off. I started my chemotherapy yesterday and am on Darathumabib, Velcade and Dexamethasone as my main treatment with a bit of zometa and a nice little selection pack of other drugs from the sweetie shop!

Still working!

Darathumabib infusion

Just a few of the additional drugs!

But the good news is that I haven’t suffered from any of the side effects I’d been warned of. I’ve got the dry mouth from the dex that I got last time round, but none of those from the cytokine release syndrome. That’s great news as it means that

1. I feel good (!) and can even do a bit of work when the WiFi works

2. I won’t need someone with me in the hospital when I come back every week

3. Hopefully the kids will get to enjoy some of the summer!

Now it’s still early days and there is a strong chance that symptoms may build up as chemo in my body builds up its residue (does that even make sense?). I’m also being given zometa again and that has always given me a fluey feeling a few days later – it’s also the drug we were convinced made me more susceptible to broken bones but maybe since I’ve had to give up sport for now it won’t be a killer.

So now it’s about keeping well. If you’re local and visit, Nick and I would like to remind everyone that I need to avoid anyone with any form of illness however minor it might seem to you. I’d much rather you asked me and we had to cancel plans, than you waited till we’d said hello, had a hug and then you tell me and I come down with something. The reality, as harsh as it sounds, is that any illness you have, I could have exacerbated, lasting longer and even hospitalising me.

I’ve got my first complication already as my dad had a nasty fall last week and has been admitted for a broken thigh bone. I got to see him on Sunday when he first went in but he was high as a kite and asleep on morphine. I really want to go back after his op tomorrow but will have to see how I am and will have to wear a mask. It’s the only exception to the rule that I will make – so relieved that he has got through the implications of the fall and just wishing him tonnes of love for the operation which is pretty major for an 87 year old. I just need to see him again now.

Cycle 8: May blood test results – Cancer levels increased again

I’m late updating my May blood test results. My cancer levels increased again from 3 in April to between 3 and 4 this month. However, all good, I’m happy chemo is over for now. I saw my Myeloma Specialist and when the time is right I’ll have IV chemo treatment again. I’m focused on enjoying a break from treatment, whether long or short.

Ready for summertime!

M protein (g/L) (if 0, then no cancer detected)
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-portrait – Taking time to be.

As I was practicing taking different poses with various camera settings, someone called out to me, that I’d seen about 30 min earlier. He asked why I was at that particular spot and whether there was something special about it.

You see, I was sitting at Queen Elizabeth Park on a mount of grass surrounded by daisies taking self-portraits. Queen Elizabeth is one of the most beautiful parks in Canada with gorgeous gardens where people admire roses and other exquisite flowers.
I guess he figured there must have been something unique or important about the daisies or I wouldn’t have been taking pictures with them.

I told him, I simply got off the bus and this was where I decided to stop. It wasn’t the meaningful answer he may have been looking for, I could tell by the perplexed look on his face, but that’s exactly what happened.

But after I’ve had some time to think, I realize I could have added more.

I stopped there, because I saw life and felt happy as I watched the daisies blowing in the wind.

I stopped there, because I felt alive as I thought about how I made it through 7 months of chemo unscathed without permanent damage to my body.

I stopped there, because I felt at peace, stronger, more self-confident and ready for the next challenge.

I stopped there, because I felt inspired, to pause, and reflect on how fortunate I am to live a life where I have time to be.

Cycle 8: May blood test results - Cancer levels have increased

I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

End of the day on Granville IslandMay 2014: Granville Island

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Cycle 7: April blood test results – Cancer levels increased

Apologies for being late sharing my April blood test results. Unfortunately my cancer levels increased a bit. Not freaked out. This chemo has been a rockstar fighting my cancer since October, so no complaints here. I’ve done very well since then as I started pretty high (48) and now I’m in single digits (3).

I believe that May will be a good month. Can’t wait to see my next month’s results. In my final cycle of treatment (Cycle 8). So happy!

M protein (g/L) (if 0, then no cancer detected)
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-portrait – Happiness is…eating a fresh mango tart
Today when I was shopping at the T&T Supermarket, I passed by the dessert section and a mango tart starting calling my name. I decided to treat myself as I love mangoes.

Cycle 7: April blood test results - Cancer levels have increased


I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

Since mid-October, I’m being treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

Steveston - Canada GeeseMay 2014 – Steveston – Canada Geese

The post Cycle 7: April blood test results – Cancer levels increased appeared first on Fade to Play.

Cycle 6: March blood test results – Cancer levels dropped again

Good News!

My March blood test results show that my cancer levels dropped. They are now between 1 and down down from 3 in February.

This chemo continues to slay my cancer.

Fatigue makes thinking and doing challenging, but I’m going to find a low-key way to celebrate the good news.

M protein (g/L) (if 0, then no cancer detected)
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (began chemo)
Early Oct = 48

Self-portrait – Want to sleep, but too early for bed
I’m late updating everyone with my March blood test results. Chemo side effects like chemo fog and fatigue have been rough and I haven’t had the mental and physical energy for the complete process of taking a creative self-portrait (thinking, doing, editing, posting).

Last Thursday, when I took this photo, was a chemo day, then I did laundry, and made lunch. I felt drained, I just wanted to shut down and go to bed, but it was too early. So I just put my head down at my desk and had a little nap. Just one of the little quirks that is a part of my life.

Cycle 6: March blood test results - Cancer levels dropped again


I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

Since mid-October, I’m being treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

English Bay - VancouverJune 2014: English Bay

The post Cycle 6: March blood test results – Cancer levels dropped again appeared first on Fade to Play.

Cycle 5: Feb blood test results – Cancer levels dropped

Good News!

My February blood test results show that my cancer levels dropped. They are now 3 down from between 5 and 6 in January.

I’m super happy my numbers are back on track. Feeling optimistic about March.

M protein (g/L) (if 0, then no cancer detected)
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27
Early Oct = 48

Cycle 5: Feb blood test results - Cancer levels dropped

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

Since mid-October, I’m being treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

Lonsdale Quay Market - North VancouverMay 2014: Lonsdale Quay – North Vancouver

The post Cycle 5: Feb blood test results – Cancer levels dropped appeared first on Fade to Play.