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

The post Cycle 4 Week 14: A chilly morning in the park appeared first on Fade to Play.

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.

The state of affairs.

Things are good this week with 2 doctor appointments down.

B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic.  He’s back on prednisone for a rash but it is minor and seems gone now.  I sat in the car dealing with the financial fallout from the Cobra.  What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.

Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments.  I made payment arrangements while I was waiting for him to finish up at clinic.  All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.

All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T.  Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.

So then yesterday, I had to drive back down to Mercy cancer center for my appointment.  It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma.  So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.

Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.

I have some house chores to catch up on and then I’m going to hit the gym.

 

A reprieve

So we’ve had some relatively positive news which is that my paraprotein has gone down ever so slightly which means my consultant is happy to keep me on the current treatment for the time being and not move me to DT Pace which I/ we were dreading!

It doesn’t mean he won’t change his mind, but it’s good news for now and we just have to just keep our fingers crossed that it doesn’t go up again quickly….and in fact that it goes down. The other impact is that my transplant will probably be a bit later than we’d expected….again it’ll all depend on what happens with the figures but it looks likely that it won’t be before the summer now rather than April/May.

That could be really good as it’s a nicer time to recuperate after my 3 weeks in hospital, will mean the kids can get to places in the light and also means we can keep getting work done on the house! We’re desperately trying to do as much as we can this year before the transplant so we can enjoy it after!! We just have to avoid when Rebecca does her Rangers community project in Romania as she doesn’t want to be worrying – sort of hoping we could go for a time just after she gets back in August!! But we’ll see!

Anyway, thought I’d just update the score as so many of you have been in touch and sent best wishes to us all – bear with us – it’s even more of a yo-yo for us than it is for you!!

Categories Uncategorized Tags