Quercetin has anti-myeloma activity

A study from 2016 came to my attention today, thanks to a member of one of the MM Facebook groups to which I belong.

This study shows that quercetin works well both alone AND in combination with dexamethasone. Let’s not forget that it’s a proteasome inhibitor (like curcumin and, in the conventional world, Velcade).

Here’s the direct link to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5216736/?fbclid=IwAR2Nk3FwZ3b8MfAqKUNOz1YXfQ6PU2lcQzAN-eGSMWvVBO7dTD9waNpxXn4 

I have to admit that I haven’t taken any quercetin in years, but it looks as though I’ll be putting it back on my “menu” now. For many reasons, not just because of its anti-myeloma activity…

Quercetin is good for a bunch of other things. For instance, it may reduce inflammation, blood pressure, and blood sugar, as well as protect against degenerative brain diseases. And the best thing is that it can be found in many of the foods we eat every day, including (red) apples, onions, cherries, broccoli, and so on. But of course it’s easier to get it in a capsule format…easier, that is, than eating a truckload of red apples every day. 😉 

A bunch of years ago, when I did some research on quercetin, I wrote that one shouldn’t take more than 1.5 grams a day, so please be careful with dosage. Do a search of my blog for more information…

Anyway…good stuff!

Stay safe, everyone!

Depression, Covid and the search for happiness

I’ve deliberated over the past week about whether to write this post and still am not sure if I’ll actually post it.

Depression is something that I have had to deal with in my family since I was old enough to remember, and something that I have personally suffered from since I was 20. For many years, I fought it, hid it and didn’t really talk to anyone apart from Nick about it. Now it is something I possibly share too readily, but I make no excuses for that as mental health can literally be life or death for some people.

When I was 20 and at University I hit a real low. I still to this day don’t know why, but I spent days and days going to lectures and work, and then getting home and hiding away in my room, refusing to talk to any of my housemates. It took Nick, on the eve of my 21st birthday to begin to pull me out of it. We weren’t together at the time, but he was the only person I was able to talk to….and he is still amazing at getting me to open up when I don’t really want to. It didn’t go away overnight, and it wasn’t the happiest 21st, but I didn’t feel alone. The black void had turned slightly greyer and felt like it was something I could start to manage.

Photo by Eduardo Vázquez on Unsplash

My next major depression was after I went back to work for the bank after I’d had Sam. I tried to go back 3 days, but Sam was quite poorly on a regular basis and if I’m honest the bank wasn’t good at dealing with that. On top of that, they were quite untrusting that I’d make up work, even though I always did. I fell into another depressive period then, and ended up, at the time, much to my disgust, on antidepressants and signed off work for 2 weeks. I felt like a total failure. I can’t believe it now, but I think I’d been brought up to think that depression was an attention seeking behaviour and that drugs were just a cop out. And people who went off sick, (good god I was working in an HR department), well that really was just taking the mick out of the company and couldn’t truly be real….could it?

To this day, I think that the way I was handled over that period may have been the factor that kicked my myeloma into play (I eventually handed in my notice when they said they couldn’t give me 2 days…although they found a way to get me back on 2 days on an auxilliary contract straight after…without the life insurance that might have helped me with my myeloma diagnoisis).

Since my diagnosis of multiple myeloma back in 2009, I have struggled quite a lot with depression, on and off. Not often with really black holes, but definitely lots of grey ones. I’ve had counselling on and off which has helped although my best counsellor is often Nick. I’m permanently on antidepressants, and whilst I occasionally try to reduce them, to feed that ingrained fear of failure, I know in reality that I am on them for life. I think that all my hormonal changes from early menopause from myeloma treatment probably impact on that and so in reality I know it doesn’t matter that I’m on them. They help me so much, to the point Nick always knows when I try to reduce them as he can tell, literally within a couple of days, that my mood has changed.

So, what about this moment? I said that this post was about depression and covid. I’m definitely struggling at the moment and finding it very hard to be positive about most things at the moment. I know that I have it very easy in comparison to many, but this is my journey and my feelings. And I’m hoping that by writing this it helps me to validate my feelings. So what is it that is getting me down? There’s a few things I think:

  • Coronavirus – obviously everything that is going on at the moment is impossibly hard for lots of people at the moment. Especially those with no support, those who are extremely vulnerable like me, those in cramped spaces or those who are losing their livelihoods. We’ve been shielding (and at times isolating) and it’s been hard. Hard not to pop to shops, not to see people until recently, and even now, not being able to see larger groups yet. With some people criticising us for even going out for walks (before the recent change in guidance) that has played on my mind and I constantly find myself trying to justify our behaviour, our ‘flouting’ of guidance (hmm, yes having more than one person socially distancing in our garden!) and when we allow the children to have one friend over at a distance. But I think the fear of how long this will go on for, and how long we will have to shield for, is the biggest concern.
  • Link between Coronavirus & Treatment As much as I trust my consultant implicitly, I am finding the fact that my treatment is on hold really hard. I am worried about so many aspects of that. Whether it will mean that my numbers start to rise (bad), whether that might mean I need a new, challenging form of treatment, whether I might relapse altogether, whether I might not be allowed my Stem Cell Transplant and when any or all of this treatment is going to actually happen. Should I try and go for it all now while things are so difficult anyway, and take that risk that I’ll be more at risk of coronavirus when I come out of the hospital? Or should I wait and risk all the things I mentioned before? I have written to my consultant and he’s looking at timelines for me to try and remove a little of the uncertainty but I’m not sure how much of it is in his hands.
  • Impact on Children – This is one of the areas that I find the hardest to get my head around. I am so proud of both of our children. They have lived with my myeloma in such an amazing and proactive way. Despite the fact that they are often, understandably worried about me, they are such independent and strong minded kids. They don’t moan about what life with myeloma means for them or the limitations it imposes on them…and I can promise you now that there are many. Even now, having shielded for 13 weeks, being taken out of school early, and now, Rebecca not being able to go back despite being in Year 10…they haven’t complained once and are really matter of fact about it all. I worry though about what September looks like as they can’t be kept off past then. So how we keep safe with them back at school is beyond me. I don’t feel that they will be going back to school anything like it was before either. What about clubs? Do we stop them from those too? And then not only will they be behind in their social and educational progress, (something I know I can’t do anything about), but there is then the chance that I’ll disappear off for a transplant causing even more disruption in their life. In the meantime, are they really meant to go 6 months without really seeing their friends.
  • Impact on Nick – I mention Nick after the kids but I probably should put him first. But he is so practical that whilst I have no doubt that he struggles in his own ways with everything he is trying to hold together in the family, he somehow manages to deal with things (most of the time!). But I do worry about how it impacts his decisions on his work, and how he spends his own time. He often ends up having to pick up the pieces that I leave behind when I am ill/ tired/ depressed. He does it without complaint but it must have an impact on him. I so love him for it but wish it could be different
  • Injuries/ Pains/ Side Effects – I think at the moment things are even harder because of all the injuries and issues I’m trying to manage. One broken foot, one painful foot (possibly hairline fracture – self diagnosed!), a knee that keeps clicking out of place and stopping me moving for half an hour, painful wrists, regular bowel issues, eyes with cysts on them and a fat body!!! And that’s all I can remember for now!
  • Work – I don’t know whether I should get back to working or not….if my transplant is months away, perhaps I should – I hate not contributing financially. But then if it might be sooner, there is no point and I’d only let clients down. I keep wondering about doing online training but training big groups isn’t my strength and I’m scared of failing – another historical scar!!
  • House DIY – This is the least of my worries, but is still there. We started lots of work on Rebecca’s room and Nick’s study before lockdown and it all came to a standstill, unsurprisingly. We’ve moved on with work outside which is great, but the work on this house is never ending and one job seems to lead to another. There is so much outside painting to get on with, and with my boot I can’t even get up to reach many areas! And I’m also worried about the indoor work being outstanding – I won’t be surprised if we end up in another lockdown and then will it ever get finished? Finishing it would also give us an isolation room for the kids if needed.
  • Bloody politics – I don’t trust any of the politicians at the moment to be doing what is best for us as a country. They’re all in it for themselves and that is super scary.

So now that I’ve written that all out, perhaps it’s not surprising that I’m finding life quite difficult. I’m not quite in that rut that I’ve been in at my most depressed, but I’m certainly not in a happy place. I can only imagine how many other people out there are having similar feelings too. That lack of control, worry about the future and concern about what life is going to look like after 2020. Part of me now thinks we should give up trying…what is the worst that can happen? I probably shouldn’t admit this feeling, but part of me genuinely wonders whether if I did end up in that ‘not to be talked about’ position, that wouldn’t it allow everyone in my family to lead a more normal life moving forwards. No more trying to wrap me up in a bubble.

I think it is that thought in particular that makes me realise that I have a real issue at the moment. I think I might look at increasing my antidepressants. I hate having depression. I hate feeling that I shouldn’t have it. I’m lucky – I have an amazing family, and great friends. But that doesn’t seem to stop anyone from having it.

So, if you’re struggling, I understand. I’m not sure right now I can help, but I’ll always try. And even if I can’t now, I promise I’ll remember when I’m feeling better. Be kind, support friends and try to understand even if you don’t fully know how to.

And for those of my friends I haven’t been there for recently, I truly am sorry. I just don’t think I’d be much company. Please don’t feel the need to message after this post. This isn’t attention seeking….I just wanted to share that depression is real….and that it’s really difficult.

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Daratumumab: results, side effects and the impact of Covid

I’ve been thinking quite a lot about my treatment in the last few days for a few different reasons so I thought I’d get it all down in a blog post.

I was back at hospital last Monday for my latest dara infusion. Slightly less worrying than the previous visits as the hospital seemed totally on top of everything covid related….and I suppose after my visits to two other hospitals for my broken foot, I’ve had to relax a little about it all (please see previous post if this means nothing….for some reason, I don’t think it posted properly). Anyway, I got my results on bank holiday Friday, and they were at 7.2. So up a tiny bit but pretty much stable for now. A lovely start to the weekend and another excuse for a glass of wine (hmmm, who actually needs an excuse in lockdown??)

Stability has to be a good thing while the world is such a precarious place, but with cancer treatment opening up now that the initial crisis has calmed a little, it is probably sensible that I keep on top of what my options are and the questions I should be asking of my consultant next time I am in touch with him. It seems unlikely now that my numbers are going to go down dramatically now so I need to find out:

  1. Are my numbers low enough that they would consider harvesting my stem cells without further treatment, and if so, would they be prepared to do that now? As far as I remember, and because the QE don’t give me chemo for this process (unlike when I had the process at the Marsden), the process wouldn’t lower my immune system and so doing it while covid is around, might not be an issue. It is a day treatment too.
  2. If my numbers aren’t low enough, what will be the next treatment that I am put onto and would that change depending on how covid-19 is impacting on life? I don’t think they would now put me on the DT-Pace that I was so worried about originally because it impacts the immune system too much and there are other options that are being allowed due to coronovirus. So, if they think I need to have additional treatment, I think I would rather have it now while Nick is at home and the kids are off school, than have it later down the line when they might decide DT-Pace is the answer after all! I’m also potentially having more side effects from the dara than before which I’ll mention later.
  3. Are Stem Cell Transplants on the agenda to come back? For a while, transplants have been seen as less favourable as ongoing treatment regimes due to the fact they are hugely intensive, make patients very ill for around 2 months, and can’t be guaranteed to work for everyone. Last time I had mine though I was lucky enough to get 8 years remission (for many, two is considered good!), and effectively be treatment free – whilst I had maintenance therapy, after the first year, it didn’t impact my life at all! So I’m interested to be clear that they will be used again. I’ll be absolutely gutted if this takes them off the table as I don’t want to be on chemo indefinitely.

The other main reason I’ve been thinking about my treatment is because I’ve had a lot of wrist pain for the last 6-8 weeks. At first I just thought that I’d been doing too much and that it would ease off. Unfortunately, that hasn’t happened and not only has it got worse, but my other wrist has also started to show symptoms too. It could be something like tendonitis or carpel tunnel syndrome, but when I looked up the side effects of dara, joint pain is one of them. And when I asked the myeloma forum that I’m on, a number of people who are at the same stage as me for the treatment, are having a similar issue. It’s pretty painful when it does hurt, so if I am going to be asked to change treatment, I’m wondering if now wouldn’t be a good time with the hope that this side effect might diminish. Along with my eye cysts. Bowel Issues. Bone weakness. And all the other things that can really get you down on a bad day!!!

As I said to Nick this morning, I try really hard to be positive most of the time and see things as being good at the moment where my treatment is concerned. But it can be really hard when I look in the mirror and see a fat, broken lady with cysts on my eyes and a feeling that there is little I can do about any of it. I think my eyes really depress me as they were the only thing I actually used to like about my appearance anyway. Anyway, I’m not too miserable at the moment but really need to sort out these side effects!

I can’t see them making any final decisions on anything until they have my next lot of results, but we’ve asked for the opportunity to talk through the questions above and see where we stand. In the meantime, I’ll keep busy doing work on the house and homeschooling (if that’s what you can call it!) the kids.

Thankfully Nick working at home means he can help with the numerous things I now have to bow out of with a broken foot and painful hands – he’s a gem as always. We actually celebrated our 18th Wedding Anniversary the other day which was lovely. We cooked together, sent the kids to the other room and had some quality time just the two of us which was fab. Oooh….and there might have been a bit of champagne and fine wine involved too – thought I’d share a couple of pics!

Broken Again

Last time I wrote I was 7 days into an isolation period. One that we’d chosen to take to try to keep Nick and the children safe from the risk of corona virus, after I’d been to hospital for treatment. I was feeling pretty low at the time, but thankfully managed to pull myself out of that and get myself together for when I came out of isolation on day 12 – last Saturday. How nice was that….lots of hugs and family time!

A consequence of the steroids I take, being in isolation, and being under ‘lockdown’….and a total lack of willpower when it comes to being stuck inside with cupboards containing anything edible, have meant that I have put on a HUGE amount of weight since July when I started my chemo. So last week, I had decided to start running with my son…to help him with his #15B415 challenge of running 15km in 2 days, and also to help with a challenge I’ve set up to get friends and family to walk/run 50,000km by the end of the year.

And it was great. He was so motivating when we ran and was really trying to help me improve as he knew how important it was to me. But unfortunately, on Monday while I was running, there was a sudden crack and my foot went. Those of you who have known me for a while, know this isn’t a sound that is unknown to me as I think I’ve broken my foot five times now in the past seven years! This was the second time I’ve broken my fifth metatarsal though and it seems to hurt far more than every other time.

It’s been a strange decision as to what to do though. With Covid-19 on the scene, and the fact we’ve been isolating so carefully for the past 7 weeks now, it wasn’t an automatic decision to go to hospital. In fact, if I’d had to go to A&E I wouldn’t have risked it. In the end Nick took me to the minor injuries fully masked and gloved, and with hand gel.

We also made the decision that we would NOT isolate this time round. It would have involved 3 weeks and, with Nick having to take me to hospital three times in one week, felt like it wouldn’t have made sense. I’ve also been finding things emotionally hard in the past few days (not helped by watching series 2 of After Life – brilliantly funny but also terribly sad and too close to home for me on many levels). The idea of spending 3 weeks pretty much on my own, filled me with dread, so I was really pleased when Nick (and the kids) agreed that they didn’t want me to go into isolation again. So keep your fingers crossed that I don’t pick anything up!

So for the time being, I am sat here with my foot up and making the most of children being around to make cups of tea (inbetween home schooling of course!). However, I’d like to stress I’m also trying to keep doing things as much as I can – even made a fruit crumble cake today! Hopefully six weeks will fly by and my foot will heal quickly!!

Broken again

Simple Sunday

It’s been a nice week with really glorious weather. We’ve eaten dinner out on the patio and it’s been great. The mosquitos are coming out though so that’s a pain. Just when it’s getting nice enough to sit out after dinner, wham, mosquitos buzzing. I guess I ‘ll try and find the bug spray today.

The chickies are growing and going outside in a new cage on the grass but still coming into the dog crate at night. They have t least another month of going back and forth and then they will still need to be separated from the big girls for a while. Getting chickens is actually a lot of work. But by September we will start getting some eggs so that’s nice.

This week I have my doctor’s appt and I will be doing a video appt. I’m not sure how they set it up yet but should know tomorrow( Monday).

I went down to our Holiday market the other day when they opened( 7 am). Spent a small fortune but got some extra things for the prepper pantry. Ever since we moved to this area in 1975, I have been a bulk buyer. Beans, rice, honey, oats, etc. We had a small co-op in Auburn at that time and we could order stuff. We also did a buying club with what is now UNFI( That Barclay just retired from after 25 years). It was Mountain Peoples Warehouse then and you could order bulk things even dairy like cheese. Then a group would get together and separate out orders.  I don’t think they allow buying clubs anymore but I could be wrong. Anyway, that’s what we did. Somewhere after embracing a minimalist house, I started backing off on having a prepper pantry. I still would buy Lundberg brown rice and a case of tomatoes from Costco but I had been trying to back off it. Then all this Shit hits with Covid-19 and yes, I am back in buying bulk in full swing.

A prepper pantry though just isn’t bulk rice but enough food that could last you anywhere from 3 – 12 months. Now I don’t want a bunker with guns and food but I do want to build up my pantry.

Some stuff I’m putting out in the barn on the restaurant shelves( stainless steel). Extra dish soap, laundry soap, canned goods are going out there. Some packaged goods are going in bins to store. I’m planning on buying a food preserver thing that seals the contents of the bag but I want to wait and see what Costco’s looks like before I commit to it.

So far my plan is to have a dozen boxes of Pasta, a case of kidney beans, a case of cannellini beans, a case of refried beans, a case of tomatoes, and other smaller quantities of condiments, sauces. Mostly stuff I know would eat normally. I did buy 8 freeze-dried meals but I’m not sure about doing that again as that is not something we would normally eat.  I’ve been meaning to try one just to see how it is. Also a couple of boxes of tea and sugar. I keep some extra coffee in the freezer but in a shut down that would last long. Maybe I’ll check into instant or freeze-dried coffee as a backup.

Right now the freezer is being eaten down and I haven’t bought a lot to replace things till I get to Costco which I’m thinking will be mid-May.

Dinners have been uninspired like spaghetti and sauce, meatloaf( I bought as I don’t know how to make a good one), rice and beans, grilled chicken, salad, and just normal stuff.  Tonight I am grilling chicken outside and will make a potato salad I think. I made a nut loaf with brown rice yesterday so I will serve that to B.

Well, life goes on, or as the chaos theorist in Jurassic Park says” Life finds a way”.

Flylady has two zones this week. Living room zone and entryway zone. I did the living room already but still need to vacuum.

 

Day 8 but losing the will

I’ve now been in isolation from the family for nearly 8 days. Until tonight it hasn’t felt too bad, but then I started to see posts on a myeloma forum talking about the lockdown for myeloma patients.

The first that got me disillusioned (and slightly angry if I’m honest), was a post that suggested that as people in the highly vulnerable category were as bad as those going into parks during lockdown, if they went for a walk. For starters, I have never had my letter detailing what I should and shouldn’t do, but even if I had, going for a 30 minute walk, in a rural area where I don’t come within 2 metres of someone, is not the same as walking down a main road or stairway where I might have to get close to someone, or may have to touch something that is contaminated. The thought of people judging me, whilst I’m in the middle of giving up most of my life at the moment, just makes me so angry. I genuinely believe that whilst we should all be following the rules to protect the NHS, that I am sensible enough to only do what is safe.

The second post got me even more disillusioned and sad. Someone was asking whether they had been right in hearing that as the highly vulnerable category, we might have to stay in isolation until next year. Yes that’s right. 2021.

I. just. can’t. do. it.

I really strongly feel that the reason that I have gone through treatment and everything else over the years, was so that I could live a normal life for as long as possible. It is why I risked a transplant once, and why I am going to risk it a second time. Because it gives me drug free time that I can be myself as much as possible. What is the point of me putting myself through all of that, if at the end of it all, I have to stay in my house and am not allowed out. Don’t get me wrong, I love our home and I love our garden, but at no point did I ever think that would be my life.

Even more than that, with two youngish children, we can’t limit contact within the house indefinitely. So, what does that mean? That I have to send the kids to school, and Nick to work, and just not go within 2 metres of any of them for the next eight plus months? Being away from them all this last 8 days has been super hard and I’ve missed their affection and love. I can’t, for one minute, imagine not being able to be near them for months at a time once they go back to work and school. And they can’t stay at home for an unlimited period – it would send them insane and impact their growth, academically, socially and possibly physically. But I think my mental health will go to rock bottom if I can’t be with them.

Up until now, I’d been so good at not worrying until we knew the facts but for some reason, tonight it has really got to me. I am so worried that after everything that we have been through, this damned coronavirus is going to bloody ruin everything. I find it hard enough being limited by my myeloma, but the idea that in conjunction with covid-19, I might end up housebound, or worse still, dead, just doesn’t bear thought….hmmm, the irony given that I can’t stop thinking about it.

Hopefully tomorrow will be a new day, but I know that there is likely to be news in the next few days about an extended lockdown. And realistically, I know that us vulnerable ones, are likely to be in lockdown for an extra 4+ weeks. I can cope with that. I could probably even do a bit more than that if I had to, I’m just not sure about months more. And I probably sound like a petulant little pipsqueak (as my dad used to call me!) moaning, but unless you have walked in shoes like mine, you’ll never understand.

And talking of my dad, that’s another thing. When will I ever get to see him again? Will I ever get to see him again? The home he is in won’t even reply to my emails asking to try to facetime him, and whilst I know they will be run off their feet, I worry that he will be feeling lonely and wondering where we all are. And I miss him, dementia and all. I miss his lovely smiley face when you can see him suddenly work out that we’re someone he loves. And I miss my friends too 😦

So yes. Tonight I am feeling really sad and fed up. And really worried about what the future holds. More than any treatment I was facing into…at least that had an end point.

F*cking covid. I really hate it at the moment.

Cycle 5 Week 18: Staying at Home

With everything going on with COVID-19, I’m staying at home and only going out for essentials (e.g. groceries, to refill prescriptions) or for chemo treatment.

I’ve completed my 2 sessions of radiation to eliminate the myeloma lesions in my mouth. Treatment was divided over 2 days, was painless, and I’m now focused on post-radiation oral hygiene (e.g. brushing with a special toothpaste, using homemade mouthwash, remaining hydrated) to reduce the risk of infection.

My March monthly blood test results continue to trend in the right direction. My cancer levels dropped to 47 from 48 in February.

I’m feeling alright and staying positive.

Staying @ HomeStaying at Home

M protein (g/L) (if 0, then no cancer detected)
Mar = 47
Feb = 48
Jan = 50
Dec = between 47 and 48 (began chemo)
Nov = between 40 and 42
Oct = 29
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5


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 December 2019 I’ve been on Darzalex (Dartumumab), an IV chemo with Velcade (Bortezomib), a chemo injection + dexamethasone.

Lynn Creek @ Varley Trail - Lynn Headwaters Regional ParkFeb 2017: Lynn Headwaters Regional Park – North Vancouver

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Myeloma and Covid-19 – this strange world

So a few weeks ago I wrote a post in a time that felt so surreal. Nothing has changed, if anything it all gets weirder. Covid-19 is changing the world by the day and I honestly don’t think much will go back to the old ‘normal’.

For us as a family, once the rest of the UK went into lockdown, things have stayed largely the same as they are for others. Until today.

I have to say, that whilst I found the first two weeks really, really hard, the last two have become easier. I think I was so scared about how myeloma and coronavirus would mix, whereas now I have learnt to let that go….most of the time. Perhaps it got easier when it wasn’t just us doing the isolation piece – is that really selfish?

We are lucky that we have a spacious house and garden that has meant that our 3.5 weeks of isolation hasn’t felt cooped up. The children have home schooled well and we’re trying to help them to mix it up with dog walks, cycle rides, card games, and other things…anything to keep their mental health stronger…and ours! The same goes for us. We’re trying to make the most of our time with the kids, with each other and in the house. Lots of gardening (it has never looked so good!), decorating (lockdown hit before we could get the decorator in!), walking and cycling. Two meals a day all together, family boxsets and more facetiming than ever before. Oh, and courtesy of Nick, Sam is now sporting this wonderful haircut….he’ll never be allowed it again….and to be fair, he only did it to try and add to his fundraising total for Myeloma UK (pls sponsor if you haven’t – even a pound would be great!)

This week things are changing again though. I am currently writing this whilst I’m sat in hospital waiting for my monthly dartumumab infusion.

Mask, gloves and glasses all in place to try and reduce the risk of picking anything up while I’m in. I can’t believe when you’ve isolated for nearly a month, how scary it has felt having to come somewhere public again. Especially when I knew that staff on the team have had the virus! I’m just pleased I’m here this week and not last week, when apparently, staff weren’t wearing masks or anything. I’d even brought in masks for them, (thanks to my sister kindly donating them!), but thank god they weren’t needed. I didn’t want to look fussy asking them to wear them, even though I knew it was a fair request. Despite my fear of being out and about, there is an element of relief at seeing people. Of a gladness for human interaction, face to face. Even the car journey to the hospital felt like a blessing of some kind. It’s another reason to hope that we will all find something to be grateful for at the end of this viral pandemic.

So the downside of my hospital visit…We’ve decided that I will self-isolate at at the end of this. I don’t think I could forgive myself if I took anything home and the kids got ill. Not when I have a choice unlike so many of the amazing people out there who are still working to keep the country running. So, I will be going straight to my room when I get back – do not touch anything, do not pass go. I had big hugs with Nick and the kids as I left for hospital, and they will be the last ones for 12 days. I’m not quite sure how hard this will be. I think I’ll get lonely but imagine there’ll be lots of facetime and zoom catch ups with friends and family. I’ve got a couple of jigsaws, lots of books lined up, and we’ve moved the TV to our bedroom! I actually think it might be harder for Nick who is now not only working fulltime, but having to manage the kids over the Easter holidays, cook, clean and keep on top of everything! I’m very lucky to have such a capable and lovely husband (and yes he reads this blog 😉 )

But this period of time is affecting so many people. I have family (and friends) who are about to have a baby, others who have businesses that are up in the air at such a tough time, and others who have been separated from their families. And others who choose to put themselves out there to try to resolve this strange and terrifying virus – nurses, teachers, civil service staff plus many more. The whole world is worried – we are no exception. This blog feels slightly self-indulgent as I get further through writing it. But perhaps one day I will look back and it will be a record that will help.

To everyone, please stay safe….and stay at home. With much love.

xxxx

Treating COVID-19 in a patient with multiple myeloma

Some readers have recently been asking me about curcumin and Covid-19. Is it good or bad to be taking it if you contract coronavirus?  Can it reduce your risk of contracting Covid-19? (See my post on vitamina D, incidentally.) I don’t know.

If I had any answers, believe me, I’d be publishing them…immediately.

Well, it just so happens that this afternoon I read a very interesting Science Daily article that may shed some light on this matter. It discusses the case study of ONE myeloma patient, in Wuhan, who was given an immunosuppressant drug, a monoclonal antibody, called tocilizumab. Here’s the link: https://www.sciencedaily.com/releases/2020/04/200403124931.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fmultiple_myeloma+%28Multiple+Myeloma+News+–+ScienceDaily%29

Okay, now that you’ve read the SD article, you can read the rest of my post. 😉 

The main use of tocilizumab is to treat rheumatoid arthritis. The interesting bit, as far as I’m concerned, though, is that tocilizumab blocks IL-6. Remember IL-6? I haven’t talked about IL-6 in a long time, but, simply put, it’s a really good friend of multiple myeloma. Aha…

And, by reducing the expression of IL-6, tocilizumab helps control the effects of what is known as a “cytokine storm” (read this April 1 New York Times article for a good explanation of what happens to Covid-19 patients when their immune systems go wacky and begin churning out too many cytokines, which can lead to vital organ failure: https://www.nytimes.com/2020/04/01/health/coronavirus-cytokine-storm-immune-system.html).

Okay, now for this: curcumin inhibits IL-6 AND suppresses the cytokines involved in cytokine storms. Yes, it does both the things that tocilizumab does, without all the side effects, which actually don’t look that bad–from a runny nose to urinary tract infections (well, okay, I’d rather not get a UTI!).

Does that mean that curcumin would work against coronavirus or indeed help lower our risk of getting this blasted virus? As I wrote above, I have no idea, even though, as we know, among other things, curcumin has anti-viral and anti-inflammatory properties.

All I can say is that this bit of news today is promising. Sure, this is only ONE single case study, but I can tell you that, on March 19, tocilizumab started being administered to 330 coronavirus patients in a hospital in Naples (Italy). At the end of this month, fingers crossed, we may have some results. Right now, Italian newspapers report that the director of this study has expressed “cautious optimism.” I also saw that the FDA has approved Phase III trials for treating Covid patients with tocilizumab.

We just have to wait and see…

But, while we’re waiting, I’m going to keep taking curcumin (actually, I’d never thought about stopping…!!!)…