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Beth

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It’s been a busy week.

It’s been a full week with a mini trip to Tahoe.

Barclay had 2 appointments this week. One was clinic to check on his rash which seems to be gone now. Of course, we’re slightly freaked out that the one case of coronavirus is being treated at UCD med center. I think I’ll wear a mask next time I’m there.

Then Wednesday we headed up to Lake Tahoe for an overnight at Lakeland. Our big thing was to walk the new trail that opened last year. It is an amazing feat of engineering and goes right along the lake where people never had access before. ( Well, the Maidu and Washoe did) but that’s a long time ago. The trail is over 3 miles all the way to Sand Harbor. I had hoped to rent bikes at the trail but it was too early in the season. So we walked. I actually didn’t think we would make it all the way but we did. Of course, here it is Friday and we are both still recovering. My calves and legs still are sore.   BUT, IT WAS SO WORTH IT. Just beautiful!!

The lake was like glass and the smoothest I think, I have ever seen. The water an incredible blue.

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These last two photos are at Sand Harbor. In the summer, this beach is wall to wall people and the line of cars waiting to come in can be miles long. They limit how many cars can park.

We got to Lakeland and 1 bedroom suite was ready.  It was great. Very nice.

We went out later for a glass of wine at Riva’s which has a view of the lake. Not too crazy as again it’s off-season in Tahoe which in my opinion is the only way to go although we will be camping in August which is high season. But generally, we stay out of town and only hit up the Safeway which is a few blocks from the campground.

 

The next day we drove the other side of the lake past Emerald Bay and I swear I had only one car behind me the whole way to Tahoe City. Just great.

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“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.

Simple Sunday

Our beautiful weather continues here. Today we’re supposed to reach low 70’s.

Spring is in the air. Although it would look like we’re headed for another drought so that’s not good. The daffodils are up and there are violets in the yard. I like violets as they will spread and pop up in the most unlikely spots.

I finished the living room zone already. Since there’s not a lot to do in there it goes fairly quick.

Yesterday, I potted 4 starter plants and today I have 2 more to do. Mostly pothos and Monstera and

Syngonium podophyllum. I have at least 2 more of these.

I also decided to repurpose a little table my daughter took out of her room to put the plants on since now I have at least 4 more to put somewhere.  I’m painting it white so it’ll blend in more.

We’re looking at stove hoods and found one on amazon we like so we’re going to order that. This begins the very minor kitchen remodel. We can’t change the configuration of the kitchen due to walls and doors so we just have to make do with the way it is. I suppose if we had money, a contractor could do it but we don’t so that’s that.

I’m also going to get a new kitchen island in stainless. Basically, the same as we have that’s from Ikea but they don’t carry this one anymore and the one I found ( AMazon)has the shelf straight across whereas the one I have it’s split.

We’re trying to prioritize what we can do and how much we can spend as there is no more ‘extra ‘ money coming in.  That SDI was pretty great.:)  😦 sad it’s over…..

Well, off to the gym and then Safeway.

Cycle 3 Week 11: Enjoying a beautiful morning in the park!

I’ve been remaining calm and trying to relax over this month as there is alot going on with my health. I went to a park on a beautiful morning to enjoy nature and the fresh air.

Last month I received my Feb monthly blood test results and it was a bit of a shock as my cancer levels continue to rise. My cancer levels are now 50 from between 47-48 in December. I had hoped my cancer levels would drop and then remain low and stable between 0 and 2 with ongoing chemo for a long time.

I’ll soon see my Myeloma Specialist and should find out whether another chemo treatment is available. If the answer is no/not right now, I’ll remain on my current treatment and hope for the best while I wait.

Focused on happy thoughts and positive vibes.

Cycle 3 Week 11:  Enjoying a beautiful morning - No time for stress!
Self-portrait: A beautiful 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
May = between 3 and 4 (post-chemo)
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan 2019 = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct 2018 = 48


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.

End of the day on Granville Island
Sunset on Granville Island

The post Cycle 3 Week 11: Enjoying a beautiful morning in the park! appeared first on Fade to Play.

How Life Changes and Challenges Us Beyond the Beyond

2.20.20

Oh how life changes us….

Riding in our local parade, 1983
Currently, as I sit down to write, Jim is struggling to balance and walk back into the house.. he is forgetting how to move, how to walk, how to move his feet… I can see his mind trying to analyse things still… over analyse in a detrimental way… Chris and Jim attempted to go for a little walk outside, but Jim has been very disoriented today, well, this week, well, since last week and the week beyond…. his situation deteriorates and accelerates downhill daily, with a few moments of clarity and orientation. Alzheimers is just so cruel and evil… I hate illness and body sabotage… so incredibly unfair on so many levels…

To Be Continued, as Jim (with Chris) is struggling stand up right now…


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Yes, I was planning to write about so many things. I always have so many topics I want to share with you. I begin several posts before I post, but I rarely post the posts I begin or write in my head….
Here’s a part of what I was going to write:
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On my way to my weekly blood tests this past Sunday, I was feeling so “alone”. NOT lonely, just so alone in all my challenges and battles. I was thinking about the difference between being Alone and Lonely. I am not at all lonely. I have so many wonderful people in my life. Family, Friends, Caregivers, Neighbors, Acquaintances, Medical staff, even Social Media “friends”, etc, surrounding me all the time. I could pick up the phone, and be with anyone, or a number wonderful people in second. I could go places, do things, have all kinds of adventures in a second, (if I only felt well enough!). I am Not Lonely at all and never will be. But the feeling of “aloneness” really hit me the other night. The feeling of being so Alone in all that I am dealing with, confronted with, slammed me in the face as I was driving. I was almost in tears. Tears of recognition. Tears of defeat. Tears of immeasurable sadness about what has happened in my life in the last 10 years, and of recent with Jim.

I pulled into Kaiser for my labs and “pulled myself together” psychologically. I am a master of disguises, always “faking it til I make it”. I don’t want to be “weepy” wherever I go. I have been, but don’t want to be. It’s just not me. I am not afraid of my emotions. Not afraid of people knowing me and my feelings. I just don’t want to be sad. It’s so sweet how I am always greeted personally by the kind, caring check in staff. They know me. I am their “regular Sunday labs gal”. Been doing WEEKLY blood tests since Kyprolis, Darzalex, now Velcade! Wow, since Fall 2015! Just something as “small” as this identity recognition warms my heart and boosts my spirits. See Julie, you really are not Alone in this crazy, continuing cancer battle.

I’m also greeted with recognition and smiles by the Phlebotomy team that knows me too well. We chat about our mutual lives. Sometimes there are others in the lab, thankfully often not, as I try to time it when Sunday night Urgent Care is not busy. Our conversation often includes amazement of my ongoing chemo, treatment, incurable cancer situation. Everyone is always incredulous I am as “ok” as I am, look as “good” as I do, and am as “positive” and “upbeat” as I am. That’s just me. I don’t want to be sad. I don’t want to be weepy. I don’t want to be dragged down by all this illness awfulness. It’s not who I am. My spirits are renewed. Just simple acts of recognition, familiarity, kindness and understanding renew me, and remind me of who I used to be.

I leave the Lab for the Pharmacy just steps away to pick up my Rx for weekly Cytoxan. My phone rings. It’s my son Scott and his fiance Ashley, on the way home from a trip. Crazy timing, as they are Right There, on the freeway, almost passing where I am. Unbelievable timing… or is it. They are right there. I let them know where I am. We’re all shocked at the “coincidence”… at how location-close we all are. Right there, at the Same time! They were thinking about stopping at In n Out. I hadn’t eaten much yet, and was planning to go home eat. They’re Right There. I’m Right There. The timing is incredible… We decide to meet up at In n Out. They’re amazed I’ll go lol. I tell them how sad I had been. How “alone” I had been feeling. The timing was crazy. Meant to Be. How could I not meet up! They’re sad I was so sad. I reassured them it had nothing to do with them being gone. It was all about me. All about the overwhelming sadness of the medical insanity in MY life. They still felt bad. My kids always feel so bad and sad for what we are going through. The timing of this was truly amazing. We met, we ate, we laughed, my spirits again were renewed. Timing… wow…

I am alone in MY journey. I am alone within Myself, about myself. Has nothing to do with others. My life is full of amazing, wonderful, loving, caring people. I have so many, so much in my life. I am so lucky on so many levels! Can you believe this timing?!

That was Sunday.
Monday is Dex Steroid day. My day of  fake feeling good. Of not feeling sick or in bone pain. Of things sunshine and renewed spirits. I feel like me again…

The kids and I go out Monday night for my daughter’s boyfriend’s birthday. We laugh a lot. I’m their crazy, steroided, dexified, hilarious mom. We laugh! I’m feeling like me again. Free of pain. Not nauseated. Free of illness. Free of sadness. Free, for a day… Temporarily, this is me again.
The me before illness took over our lives.

I am not Alone. I am not Lonely. I am a Very Lucky Lady!

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!!

Simple Sunday

We walked this morning and it was noticeably warmer @ 46 degrees. I think we’re going to get close to 70′ today and mostly sunny.

A few more books I got at the pet bookstore.F6FAF8BB-8500-4D03-A711-DD270A923F05.jpeg2539EA24-DD46-4DED-A5B8-519CEC359967.jpeg

My Culinary Journey was excellent. She actually lives in Provence part of the year and right near Sacramento the other part. I think she said Winters. She moved to France in 1970 so quite the adventurer. I was just starting U of A that year. So some perspective.

The ‘Everyday Greens’ cookbook is one of my favorite and this is a signed copy.  Greens is the vegetarian restaurant run by the Buddhist monks from Tassajara and Green Gulch. Back in the day when I was practicing Buddhism, this is the Sanga I belonged too.  We’ve been to Greens a number of times and if you’re in San Francisco you should definitely go. The food is delicious and beautiful.

I’m also reading ‘Me Elton John’. Wow, it’s a terrific book and boy did he go thru some drug-crazed years. It’s amazing and even more so what he overcame and is now such a philanthropic person. He gives generously to many causes.

This morning I’m making some Butterscotch Oatmeal cookies. They smell good.

I’ve been doing some embroidery so I picked up a few little books too although it’s not quite what I was looking for. I mostly like doing edging and little spots of color on things like my linen napkins.

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Today is a gym day.

This week is Flylady’s bedroom zone if you follow. If you’re new to it. Start by decluttering ANYTHING that doesn’t belong in your bedroom and any excessive furniture. Yes, the treadmill being used to hang clothes on needs to go.

I have only one Heywood dresser and a side table and that’s it besides the bed. The side table I need to hold the pills I take at night. Plus my water glass.

Last night I made falafels with tahini sauce and a delicious recipe that was Castelvetano olives, lemon zest, shallot, and garlic and fresh thyme.  You cook the shallot, garlic, and thyme in some olive oil. Then add the olives and lemon zest. Cook for a few minutes then let cool some. Then add a block on feta cubed up. I’ve found the feta from Costco in the brine from Greece is the best.

This is supposed to be served with a grilled rustic bread but I just put it over the brown rice and it was delicious.

Tonight I’m making a quiche of some sort as I have eggs to use and some gruyere cheese as well.