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…!!!)…

Keeping on…

Things are still in lockdown in California, for which I am grateful. Gov. Newsome is doing a great job of keeping ahead of things with basically shutting everything down. I honestly don’t get the Trumpers hating him so much when all he is doing is trying to take care of California. The negative comments on the local the newsfeed on Facebook are nuts.  Crazy!!

Since I’m an introvert and don’t go out to movies or things often it hasn’t bothered me to be home except maybe going out for coffee.

The park has posted signs to walk 6 feet apart and the playground is now taped off. I’m guessing the park is getting overwhelmed with people trying to just get outside. Since we walk early there is only the new dog walker guy and he walks very fast and not near us. He’s been coming for about a month now. Many people over the 8 years I’ve walked there have come and go. It changes with the seasons too. Lots more people as the weather gets nice. So we always start backing it up and going earlier. In summer even 5am is not too early.

I made some more oatmeal chocolate chip cookies yesterday and they are almost gone today. Humm…rationing  next??  We had fun individual pizzas last night although my son said each person was supposed to top their own. I did it because nobody was coming in to do it.

Tonight I’m making some chicken tenders with pasta on the side. I  think I even have some Quorn chicken tenders for B. I don’t have any salad stuff but I do have chard in the garden I can use.  Oh, BTW, Amazon prime has Julia Child’s the French cook original on and it is so fun to watch. It’s in black and white which is too bad since you can’t’ see the browning and sauteing she describes. I’ve actually learned a thing or two and I wonder how much I saw originally as her style of cooking is similar to mine although she is maybe a little more strict. Anyway, check it out as it’s fun.

I haven’t really started any projects except working on notes for a “prepper” pantry. I was trying to move away from stockpiling but now, no way.  If anything I’m going full throttle. Yesterday, I ordered from Mountain house which does freeze-dried stuff.  They didn’t have the #10 cans I wanted( all sold out) but they did have some servings of 2-3 available. I bought some to try and of course, they really last forever probably.  I’ll give an update when they arrive. Also, I’ve ordered from Costco, but they are sold out on most things and some they are not shipping to my zip code right now. I wanted a case of Rosarita’s beans but that’s not available as of yet. I’ll do a write up down the road when I get it together.

I need to schedule my labs for next week or maybe the following week. I don’t see Dr. Laptalo till the end of April and even then if things are only the same( my numbers going up but still not starting treatment), I’ll ask to just pass on seeing him physically.

BTW, Finnie seems to be doing better and eating a little more. I’m still not sure how long he will last but at least there has been an improvement.

Oh, and I think we are going to get some chicks as we know we’re not going traveling anytime soon so we will be home to take care of them.  I may order online so as to avoid the feed store though.

Well, I hope everyone is staying safe and healthy.

 

And change……

So unsurprisingly the Coronavirus has meant a total change in our life. Where to begin?

Well yesterday I was back to see the consultant. After my numbers going down the week before last, last week they went back up to 9.2. I’m sure there must be a better word than rollercoaster! Basically it means the graph shows my numbers as roughly staying the same. Which is definitely better than them rising. Before this week, I think they would have been considering hitting me with DT-Pace but because this blasts your immune system and would put me at greater risk of contracting Coronavirus, we’ve been told that both this, and Stem Cell Transplants have, unsurprisingly, all been cancelled for the foreseeable future.

So of course our next question was, what does this mean for me. The consultant is now happy, given the current climate, to see if the daratumumab can keep them at the current level till things blow over. Great. If it does. But what if not? Whilst the previous two options are now off the table for the time being, apparently if my numbers rise, the next option would be a drug called pomalidomide. This is in tablet form and in the same family as revlimid which kept me in remission for a long time. I tolerated that well although it is likely that my neutrophils will decrease which means I will still have lower immunity- so isolation again will be key.

I have to say I’m quite relieved. With everything that has been happening, we thought it was unlikely they’d still do transplants but I was concerned that there would be no alternatives and that they’d have to leave my numbers to just increase, risking bone damage and/or kidney damage. So I’m really relieved that this isn’t the case even if it does mean the whole situation has changed again. Better a different course of treatment than no treatment, or a treatment that would put me at major risk.

Last week Nick and I also started to talk seriously about what the virus might mean for our lifestyle and whether we were happy to wait to be told what to do or whether we should think ahead. We decided that we were getting more and more concerned about the risk that we were facing especially with the kids being at school and clubs every day.

Nick’s company had already contacted him at the beginning of the week to say he had been put on the ‘at risk’ list due to my myeloma and the treatment I’m on. This meant that he didn’t have to go to the same meetings, hospital visits etc that might normally have been part of his role, nor travel to London for unimportant meetings. So if he stayed off work, but we kept the kids at school, it felt like we were doing things in a very half arsed way!

By the following day things had moved on and most of his company was being told to work from home where possible and so we talked again and decided that we were going to email the school to tell them we’d be withdrawing them.

The kids haven’t loved the decision if I’m honest because they can’t see their friends but they have understood why we’ve done it. I’m not sure they particularly love our commitment to home schooling them – lol. We’ve been so lucky as the school has been amazing in their support in terms of a) agreeing they would support the decision and b) agreeing to get teachers to send work home each lesson. We’re ever so proud of how the kids are doing though – they’ve been following lesson plans each day and doing their homework. It’s not easy when you don’t get to see your friends at all at that age (or at my age!). I’m sort of hoping that schools close soon for their sake – they won’t feel so separate then. At least now most clubs have finished so they aren’t worried about missing out there.

At the same time as withdrawing them, Nick and I made the decision to self-isolate. Me totally and Nick as far as he can do whilst supporting us. We’re now 4 days in and I can promise you it isn’t easy so I can understand why the government wanted to wait to ask people to do it!! It’s amazing how many things you forget that you ‘pop out’ to do. Birthday cards, loaf of bread etc.

It’s also amazing how many things come into your home that have been touched. Most of us have probably seen the change in behaviour of amazon and Royal Mail but have you thought about wiping down packages when they come in. And what about your online food shop that so sensibly keeps you in isolation? Should every packet be wiped down? Or kept separate for 12 hours to and sure any viruses have died? Have I just become paranoid? All mad when you start thinking about it, but think about it we all should. This is really serious.

So yesterday most British people heard Boris Johnson and his team tell us that people like me, with myeloma, should isolate ourselves for 12 weeks. We got there first! But it’s going to be hard. Very hard. Especially once other groups get added to this, which I’m convinced they will be.

I can’t totally isolate as I have to go to hospital once a month for my treatment. But it sounds like that’ll be ask quick and careful as possible and I’ll be set back home to get results via the phone and not face to face. That suits me now that they aren’t planning to change much or move forward with the SCT. To be honest I think I’ll need that trip to stay anywhere near sane!!

I’m sure there’s more but my brain has gone for now so I’ll stop boring folk!

Cycle 4 Week 14: A chilly morning in the park

Sunday morning was pretty chilly (-2 C) when I was walking around before sunrise in the park. Unfortunately I really feel the cold due to my compromised immune system. My February monthly blood test results are encouraging. My cancer levels are 48 down from 50 in December. My Myeloma Specialist has increased the dosage of two of the drugs I take with my chemo, so hopefully my March results will be much better.

Overall I’m doing alright, eating healthy, and remaining positive each day.

Feeling Springtime in the air!

Cycle 4 Week 14: A chilly morning in the park

M protein (g/L) (if 0, then no cancer detected)
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.

Steveston - Britannia ShipyardsSteveston – Britannia Shipyards

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Meibomian Gland Dysfunction, Chalazions and other fun things!

Back in January I wrote about the fact that I had been diagnosed with Meibomian Gland Dysfunction. Well, it turns out I have it pretty severely now, and we think that it is caused by the velcade that I am having, albeit it that it is pretty unusual to have it! I like to be unusual. (Not). Basically, it looks like my glands have not only blocked up and caused inflammation, but now they have become blocked and infected (blepharitis) which have lead to what is called chronic blepharitis and what is called a chalazion.

So when I just had the MGD without the infection, the best way I was told to treat it was by using a warm compress and massaging both eyelids. You can buy masks from the chemist that do a similar thing, and wipes that you then wipe the eyelid with. Anyway, that seemed to be working really well until a couple of weeks ago, when the first stye/ chalazion occurred. It basically made my left eye really sore, really swollen and very itchy. So I took a trip to the GP on the Friday who prescribed me with antibiotics….and I also started on ibuprofen on the recommendation of a friend. (Before anyone says anything, I don’t have any kidney damage so whilst I’m not meant to take it, it felt like a sensible thing to try in the short term)

Anyway, into the hospital on the Monday to be told it wasn’t anything to do with the velcade (hmmmm….I don’t think so!), that I should come off ibuprofen so I didn’t cause any kidney damage and take antihistamines instead, and prescribed extra eye drops. And things very slowly seemed to improve.

Until the same day two weeks later, when it came back in the right eye (and less so in the left eye again). This time, I immediately started back on the eye drops which I luckily had, emailed my consultant (who hadn’t been the one to give me the previous advice), and got it agreed to go back onto the ibuprofen to at least help bring the swelling down a bit. This time though, I’ve had it really sore over the whole weekend with it not only causing the chalazion, but also becoming infected.

So today, back to the hospital and it was agreed that I wouldn’t have my final dose of velcade as it quite probably was that which had caused the issue. In addition, further to an article I was given by my consultant, it was decided to put me back on antibiotics, but mainly to increase the dexamethasone that I’d had reduced last year due to it causing me anger issues! Dex is an anti-inflammatory and I have to say that I felt better within a couple of hours. It’s still infected of course, but the swelling is lower and I haven’t needed the ibuprofen.

Now we’ve got a bit of a waiting game. Hopefully, my eyes will just improve as I shouldn’t be having any further velcade. That is over thank god. In addition, I’m hoping to get a bit of energy back too… I’m now meant to be going to daratumabib maintenance until my stem transplant.

But, my numbers went up last week. Grrrr. Nothing is simple. I think they’ll still try at least one lot of maintenance to see if the dara works better without the velcade. But who knows what they’ll do if they keep rising….we could be back to the DT-Pace regime. I did my bloods again today, and I think they’ll be done next Monday too…all of which will give us a better indicator of whether I’m hovering around the same place, no longer responding to treatment, or whether my numbers do what we’re desperately hoping, and come down a little further to about 4 or 5.

Somehow (I may thank the antidepressants for this), I seem to be coping relatively well with it all. As does Nick I think. We aren’t telling the children too much until we know and luckily because we’re not falling to pieces, that is much easier. There is no point panicking unless it becomes necessary. So, I’d ask people just to take care in talking in front of them so that we can tell them what is necessary, when it is necessary, rather than them overhearing something….thank you.

I’ll update on here when we know more. Keep your fingers and toes crossed for those numbers to come down further please….I’ll even accept a few prayers if people are that way inclined!!

“Use of curcumin in multiple myeloma patients intolerant of steroid therapy”

A few days ago, Dr. Terry Golombick of the Department of Endocrinology, St George Hospital, Sydney, Australia, sent me the link ( http://bit.ly/2VwqWf1 ) to her team’s most recent clinical case report, in which they tested curcumin on myeloma patients who were no longer able to tolerate the prolonged use of dexamethasone due to its adverse side effects, such as “fatigue, weight gain, fluid retention, poor impact on mental health, osteoporosis and hyperglycemia, or poor diabetic control.”

This new study selected 15 patients, ranging in age from 57 to 86, who were either taking immunomodulatory drugs (IMiDs) or proteasome inhibitors (PIs) in addition to the dexamethasone. They replaced Dex with a daily dose of 3-4 grams of curcumin (about half of what I take, btw).

Of the 15, three died during the study period…not because of the curcumin, obviously, but because they weren’t doing very well, unfortunately (you can read the details in the paragraph located above “4. Discussion and Conclusion”).

The other 12 patients, however, are stable and doing well, in spite of the fact that some have high-risk cytogenetic and FISH abnormalities.

The combination of curcumin and the other conventional drugs reduced their paraprotein levels by 38%, and plasmacytosis by 59%. How about that?

Anyway, it’s not a difficult read, methinks, so please have a look at the above link…

Thank you, Dr. Golombick! I am so grateful to you and your team for all your tireless work. You give us hope!!! :-) Thank You Thank You Thank You!!!

We need MORE studies like this one! Not 10 years from now…but…NOW!!!!!!!!!! 

Quick update

Well, quite a lot has happened since I wrote my post on the loss of our Priscilla.

A few days after her death, Stefano came home complaining of a sore throat, which soon turned into a full-blown case of bronchitis: more proof, to me anyway!, of a close association between stress (and, in this case, probably grief as well) and a lowering of the immune defenses.

Anyway, we tried to be careful, but to no avail: on top of everything else, I caught his bronchitis and was sick (againnnnnn!) for about two weeks. This happened in mid January or thereabouts. So, all in all, I was sick/convalescent/sick/convalescent for more than a month. Agh! Ridikkulus!

But now I’m fine…fully recovered.

The horrible month of January 2020 ended with another death: my mother-in-law…This didn’t come as a complete surprise, since she’d been doing poorly for some time, but still, on top of everything else…it wasn’t easy.

But, as an upcoming post will show, things seem to be slowly getting better. As I mentioned, I’m fully recovered, and…well, okay, here’s a sneak preview of that above-mentioned post: Stefano and I spent a lovely long weekend in Paris recently. 🙂

We were lucky and managed to return to Florence right before Italy was hit by the coronavirus “hurricane.” Speaking of which, even though I think that the COVID-19 outbreak has generated a bit too much mass hysteria (in Florence, e.g., where thus far there have been only a couple of confirmed cases, people have been emptying supermarket shelves, and so on…), I have to admit that I’d really hate to catch that blasted virus because of my probably-still-weakened condition. So I’m being very cautious…trying to stay at home as much as possible…No hugs, no kisses…washing hands all the time, etc.

Ah, before I go: tomorrow I’m going to publish a post about a new curcumin-myeloma patient study!!! 🙂

Take care, everyone! 🙂

How communication makes all the difference

So we have met with the transplant consultant this week and things are a little bit clearer. Not much has changed but we understand it all a little better now which is helpful.

So one thing that he explained to us was that my paraprotein isn’t as low as they would want. I thought that because they are the same as when I had my first transplant, that they wouldn’t have an issue. But it seems that they look at the percentage decrease, and I’ve only reached about 60% where they’d want to see a decrease of about 80%. So, what does that actually mean. Well it seems that we’re going to keep watching for a couple of months. I come off my velcade (thank god!) after next Monday, and they think there is a chance that the Daratumabib has the possibility of kicking in again. If it does, and it takes my paraprotein lower, it might reach a level with which they are happy to proceed to transplant without any further treatment. Which would be great news.

If however, it doesn’t take my numbers any lower, or they start to increase, we may have to revert to the idea of DT-Pace. Yuck. However, at least now, whilst we know that it would be an awful treatment, that it would be the best option available and would give me a much better chance with the transplant. We’re still keeping our fingers crossed that the numbers keep going down though!

He also discussed my stored stem cells which have been at the Royal Marsden until recently. I was told that there weren’t enough, but it now seems that we might have. Apparently I’m very unusual because one test said there were enough and another said that there weren’t. Not what usually happens. So there are some questions to be asked to see which number is the most useful. And in the meantime, I’m going to try and lose some of the weight I’ve put on from a mixture of Dexamethasone (the steroid) and my total lack of willpower! Apparently, the result that says I don’t have enough stem cells, is linked to how many they need against body weight…..so whilst they haven’t said anything about losing weight, I’m thinking it can’t hurt*.

So in terms of dates, we don’t know much more. I think it’ll be April before we have much of a solid idea, and at that point, we’ll probably get told either a timescale for transplant, or that I’m going onto DT-Pace….or knowing my luck, something totally different!!

However, I’m hoping that in the meantime, that coming off the velcade might mean that the next couple of months are a little easier and that I start to feel a bit more human again. I have to say that the last few weeks have become harder and harder. I’ve been so tired that over half of my week has been wiped out. I haven’t even managed to walk Marley and have had to get the kids onto it. Rebecca even dealt with the builders last week, made them coffee and put a blanket over me while I slept for 3 hours. Poor kid. But I’m so proud of how they are coping whilst looking after me.

Anyway, the overall feeling is that by getting the information that we did on Monday, Nick and I both feel in a position that whatever decision they make moving forwards, we have 100% trust with what decisions they’re making, and why they’re making them. And that has to be good. The one thing I never want is to wish we’d done things differently.

* I’ve decided to give up processed sugar, crisps, nuts and takeaways for Lent – take a look at my #50B450 tab on this page.