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A calm and rainy day ahead. Rain is indicated for most of today but at least it’s not too cold yet. We managed a walk in the park yesterday between storms and it was pleasant. I’m not used to being there in the late morning so things looked different:)
Yesterday, the baking bug hit and I made some chocolate chip cookies, the dough for sugar cookies( in the refrigerator now) then I prepped dinner, which was chicken with mushrooms and finally assembled two casseroles of enchiladas for tonight’s dinner.
The week ahead is not too busy. B has clinic on Tuesday and then after that, we’re going to shop Trader Joes. I plan to do Costco later in the week. I plan o getting what we need for Christmas dinner. Our tradition is fondue Christmas eve and then cheese lasagna Christmas day.
Today is a gym day.
Plus it’s the kitchen zone for those that follow Flylady. I’ll do some today and some tomorrow. It’s raining so no walk this morning.
It’s been a good week overall. The diverticulitis seems abated for the moment. I certainly hope that doesn’t happen any time soon. I hate being on antibiotics which generally my body rejects. This time it seemed ok with just minor itchiness which may have been psychological. Anyway, I guess I ‘ll just have to do a wait and see and if I notice lower left discomfort call the PA again.
It was sunny yesterday which did improve everything. More rain and snow are on the way tonight and thru the weekend.
Just got back from my walk and there are 2 geese back at the park. I’m guessing these are 2 that were injured and Wildlife Rescue helped them. So happy to see 2 of our friends!
Today I’m going to just stay home and putter around. I want to declutter some in the closet from hell and see how things can be organized more efficiently. The one closet in this house is for our clothes and it’s our overflow pantry. Maybe I should rethink the pantry part and get the one from Ikea. I’ll have to consider this after Christmas.
It’s that time of the year again, and given that we’ve made the decision to donate to Myeloma UK rather than send all our local/ online friends cards, it’s time for the Christmas newsletter to come out on my blog. This is my one post of the year where I don’t actually write it – instead, Nick has the privilege of sharing our past year with friends and family! So, over to Nick…….
To our family and all our friends (I say our friends, but of course mean Debs friends – I don’t bring much to that particular party)
Unbelievably this is CNL9 from the Famille de Gascoyne. I genuinely believed in 2010 when Deb first suggested a newsletter that it was one of her passing fancies – like going to church with the kids, buying an ice-cream maker or having regular quality time with yours truly (cheeky wink emoji), but I was wrong and you don’t hear me say that often, let alone commit it to text.
So here I am, nearly a decade later, trying yet again to make the trials, tribulations and joys of an average Midlands family vaguely interesting and usually failing – but because one or two of you told Deb you found my witterings slightly humorous, I now have to do this for the rest of my life.
Thanks and Happy Christmas.
Ok, now I have set the tone please settle down with a warm cup of bleach and enjoy the next few minutes!
2019 has been a year of house renovations, family growth, evil return of Myeloma, GCSEs starting, new jobs and dog whispering – and not necessarily in that order.
Let’s address the crap bit first. As many of you know, Deb has started treatment again for myeloma following relapse and she makes the pilgrimage each Monday to QE Birmingham where they infuse her with newly approved treatments to kill as much of the cancer as possible in preparation for another stem cell transplant some time next year (something to look forward to!!).
However, true to form, Deb is not defined by her illness but rather uses it in the most positive of ways to support the charities that in turn support us and many other Myeloma patients. We are so proud that she was officially recognised this year when she was nominated for, and won, ‘Helpline Volunteer of the Year’ at the Helpline Parnership awards, which recognised both her fundraising for Myeloma UK’s Peer support network (£125k and counting – spoiler alert as you are about to see another way we can take your cash) and her active participation as a Peer Support Volunteer.
In the 132 years I have been writing these newsletters, this is the first time I can quote someone (accurately) – in this case the Chief Exec of Helplines Partnership……
“Deb is a superb fundraiser for Myeloma UK, enabling key services to continue, an ambassador, a committed volunteer for over a decade and great at her job because she has true empathy with her peers.”
She went on to say……“and of course this can only be achieved by the support of a wonderful, attractive and super-intelligent partner.” But that bit didn’t make the paper!
As stated earlier, Deb continues to actively fundraise and is currently focused on her 50KB450 and getting as many people involved as possible (www.justgiving.com/50kb450) and Sam has got into the act with his 15b415 (www.justgiving.com/15b415). Please take a look, keep up your support and maybe Deb can push for a CBE or become a Dame……
Whilst doing this, until recently when she has had to stop, Deb has helped to look after her father (who has sadly had to move to a home after a bad fall), netballed, social media’ed, dog trained, project managed, argued with builders and generally managed the entire household and all the work that goes into running a young(ish) family. I am, as always, inspired and proud in equal measure.
For balance and accuracy I should also mention that when she is on high dose steroid she is an evil witch – but only when she is awake. They didn’t mention that in the newspaper either – fake news strikes again!
All that work on the house has meant we have had more ‘staycations’ than holidays away, but in October we did travel to the far-away land of deep fried pizza and Irn Bru on a cultural exchange to sunny Scotland. Whisky, socially educating the children with the Rocky Horror Picture Show, visiting Myeloma UK, camera obscurer and hot tubs is a good summary of our adventure. We had a great time and are starting to think about next years oddessy once treatment is over.
Moving on to the fruit of my loins…..
Rebecca is 15 and in her first year of GCSEs (wow – where did that time go?). She has gone from strength to strength this year and is super busy with a plethora (always wanted to get that word into a newsletter – it means loads but sounds far more pretentious) of activities and interests.
She has progressed from guides to Rangers after a great 3 years & completing the Baden Powel award, volunteers weekly at her local Brownies, has fundraised for a trip to Romania in 2020 where she’ll work as part of a community program (or complain regularly about the food, or both), is doing the Duke of Edinburgh challenge, learning taekwondo, studying photography & cornering the Hagley babysitting market!
In early Autumn, she and I completed the Yorkshire 3 peaks as we cavorted for 12 hours over 3 gigantic mountains in Gods own country of Yorkshire. I say we cavorted. To be clear, Rebecca cavorted. I walked, stumbled, limped and then cried – but with Mrs G support we completed the task and thanks to everyone who supported and sponsored the event. Rebecca has had a great year and we are super proud of the person she is!
Sam in now 13 and well into his third year at secondary school. I have just re-read last years exciting instalment of the Gascoyne Christmas Newsletter, and to be honest I could just cut & paste my summary of the boy-child. School, football, mates and Xbox (not necessarily in that order). I mean this in a positive way because one year it might read very differently – but for now I can say we are proud parents of a bright, funny, kind boy. Football is still a big part of his life and at the end of last season he was awarded ‘Most Improved Player’ for his local team – as proud parents we applauded and after the presentation asked how he felt and he said ‘ I must be most improved cos I was shocking at the start of the season, Dad can I have some money for getting the trophy?’ A theme is starting to appear me thinks.
I asked Sam if he wanted me to say anything else about him and after a milli-second consideration he said ‘No. Can I have some money for a drink?’ – particularly strange as we’re at home!
For me 2019 has been a year of house renovation, family and starting a new job. I am now working with a team who have brought a new blood cancer treatment to the market in the form of CAR T – google it and be amazed as it is truly fascinating and of course I have a personal interest as they research potential use in myeloma. Watch this space. [Edit Deb: He has been a superb strength too to us all as a family – he does it quietly and without fuss so I need to add this as it is a huge job that he takes on without complaint after his long days in London. We couldn’t have managed the last few months on treatment without his love and support and whilst he would say it’s just his job/ life, not everyone would do it so well].
So that’s it. 2020 will bring its own challenges, highs and lows and I want to thank all of you in advance for your support and love – we do, and certainly will, benefit from it all.
Wishing you all a Happy & Healthy Christmas and 2019
I’ve been walking for decades. When I was 25, I was told it would save my back after a fall. It has saved far more than my back! Walking has been a source for both physical and spiritual renewal in my life. Through life’s uncertainty, walking has been a reliable friend. When my life becomes too frantic, it is rest. When I need guidance, it is where I find God. When I need respite, it is peace. I have dreamed and prayed over countless miles of mountain trails, sandy beaches and city sidewalks.
My love of walking started when I was a child. My grandma gave my sisters and me each a small cotton bag filled with ten to twenty shiny copper pennies to spend on candy at the drugstore on Main Street in the tiny Wisconsin town of Barron. We felt so special as we headed out on our adventure. Our walk past gardens of peonies and rhubarb, was filled with anticipation of our arrival at the corner Five and Dime. Through the storefront window, we eyed jars filled with candy dots, jawbreakers, and tiny wax soda bottles filled with pink sugary water, trying to decide which treasures to choose with our pennies. It was joy…the freedom of the walk, the sweet treats and the love I felt from my grandma! God knows this about me. It is the only explanation for why I find pennies on almost every walk.
Walking is simple…just head out the door. But not all walks are easy.
There is a hill at 2.2 miles into my neighborhood walk. Not a straight up steep hill, but a long and gradual, lung burning incline. It is the hill that often factors into my walking decisions…as I think maybe instead of this walk, I should go somewhere flat, go a different direction or not go at all! I know! It sounds ridiculous as I write it too!
I have been acutely aware of this hill over the last several days and have been experimenting on how I approach it. Instead of focusing on the top of the hill, I’ve been making interim goals…walk to the mailbox…walk to the post…focus on the path right under me. Two to three short steps feel almost level. I’ve got this. Don’t think about the next little elevation…focus on this step…the next step…don’t look too far up the hill. Push a little. Stop and rest a little. Cheers for each small bit of progress. It works. It isn’t less hard. It is just more manageable.
This is different for me. I have always been a planner and goal setter…until three years ago when multiple myeloma became part of my walk. Suddenly the future was very uncertain and planning ahead became a mental challenge. It is my other hill to climb, a long and gradual daily challenge. It is every step, every stop to breathe and every grateful day I get up and get to do it again.
In these three years, I have been blessed with little pain and discomfort, even after life altering treatments and some scares along the way. Medicine has been good but also underlies unwanted side effects. My immune system is working hard on too few fighter cells. I challenge my doctors to work for me, to see me as an individual and not a statistic, while appreciating their clinical expertise and the science behind it. I anxiously wait on test results, staring at the notification of their arrival and pray for the good news of continued stability.
I am not everybody with multiple myeloma. I don’t fit the profile. But I have been given this. I have learned to let go of Dr. Google who only visits in the wee hours of morning when in sleepless night, I try to find wisdom or that one magic healing potion. I have learned that my army of caregivers are my life givers. Family that forget I have cancer, enlist me to help, love me unconditionally and just go and do life with me! And I have learned not to think too much about what “might” happen next. It doesn’t help me. This is not to say that I don’t think ahead. I do! I have a long list of things to do. I won’t allow this beast of a cancer to scare me from living. It’s just that I have learned to live differently. I take each day just like I am approaching the hill…two steps forward…sometimes two steps backwards…sometimes standing still…and take a breath, thankful for each step I take to reach the top of “the hill” on this day.
I have learned that sometimes it takes having the life we know ripped away to find our way. My grandson took me to see the new Disney movie Frozen II, where this idea is the central theme, “where all is lost, then all is found”. The enchanting ballad, “All is Found” speaks to me asking “…can you brave what you most fear, brave enough when all seems lost?”
On this new journey, I have learned to be brave and through it I’ve found so much more than I have lost. I am resilient and content. I’ve learned to find strength by trusting God in a new way. He says to “look carefully” at how we walk, not as unwise but as wise, making the best use of time….to understand the will of the Lord. I get it! In retrospect, it was time wasted I regret most. It was holding too tight to things I’ve loved…instead of just simply loving. It was trusting my own will rather than God’s will. It was looking way far up that hill and missing the beauty right under my feet.
I celebrate all that is these three amazing years. I live with joy! I live with hope. And right now, I’m heading out to climb that damn hill!
“All Is Found” (originally by Evan Rachel Wood)
(from “Frozen 2” soundtrack)
Where the north wind meets the sea
There’s a river full of memory
Sleep, my darling, safe and sound
For in this river all is found
All is found
When all is lost, then all is found
In her waters, deep and true
Lay the answers and a path for you
Dive down deep into her sound
But not too far or you’ll be drowned
Yes, she will sing to those who’ll hear
And in her song, all magic flows
But can you brave what you most fear?
Can you face what the river knows?
Until the river’s finally crossed
You’ll never feel the solid ground
You had to get a little lost
On your way to being found
Where the north wind meets the sea
There’s a mother full of memory
Come, my darling, homeward bound
Where all is lost, then all is found
I woke up to clear skies and went for a walk in the park.
I haven’t had a chance to share the horrible experience of our beloved geese getting murdered. It started about 3 weeks ago now when I noticed there was a white goose missing. We have a gaggle of 12 geese in our park and 1 Muscovy. So I noticed one of the white ones ( there were 3)missing.. Then I counted the geese and there were only 9. So I thought that’s weird. There’s no feathers or carcasses on the grass. I was concerned as the geese stay on the water at night and after our 2nd round on the path when it starts to get light they start coming on to the grass. So I was definitely worried like where did the geese go?
So last week, posted on our town’s nextdoor neighbor, someone posts what happened to the geese? There are dead geese down by the post office. I flipped out. Apparently, at 8:30 the night before a car plowed thru the gaggle and murdered almost all of them. We saw feathers all over and a number of dead geese on our way down that morning to walk. I was beside myself. At the park 0 geese. Not even Uggy our beloved muscovy.
Many people commented including me, as to how could the geese have gotten down there from the pond. They NEVER go off the water at night.
Sadly, we will never know but I think it was maybe teenage boys who started on the first 3 earlier. Then 2 weeks later somehow got the rest of the gaggle down the road and ran them over. I know it sounds far fetched but I just can’t imagine them marching all the way thru town to the post office at 8:30 at night.
It’s been sad to go to the park and not have my friends there and I miss them. Plus I hope whoever did this to the innocent geese get exactly what they deserve.
It’s raining and I’m not walking and it’s 5:30 am. I haven’t bought the Frogg Toggs yet so I don’t have any rain gear. I guess I’ll get my ass in gear and do that this week as I don’t mind the rain as long as I’m covered up.
It hasn’t been a great week. I had some pain in my side last week and it turned out to be a mild case of diverticulitis. So now I’m stuck on antibiotics which wouldn’t be so bad but there’s 2 and one is one that is NO alcohol(wine for me) as it will give you a violent reaction. So not fun for me as I love my ritual of wine in the evening. Well, maybe change is good.
Then my CBC and CMP came in and they were all fine. Unfortunately, my Kappa light chains went up another 11 points to 55.7 and Lambda went down so that means the ratio went up( not good) to 5. 1. I’m not freaking out but it’s clearly not a good sign. Treatment is out there again the question would when is my doctor going to think it should start. He still seems to think my numbers too low. They are low and I don’t want to start Velcade soon but time is ticking and I don’t want to have fractures or let my numbers get too high. Granted they are still low as when I started treatment before they were over 1000mg/L. I guess it’s just wait and wait some more.
I did do quite a bit of house tidying this morning. I decided I needed to do something or I was going to go stir crazy. So I swished and swiped the bathroom, tidied my office area, mopped the kitchen floor and washed some of the entryway windows. I plan to go out and put on the gas heater and clean the sun porch.
Here is a synopsis of the article we will be discussing in the December 1st, 2019 session of #amyloidosisJC, an online journal club focusing on all things amyloidosis. The synopsis was prepared by two recipients of the Don Brockman ASH 2019 Trainee Travel Grants supported by the Amyloidosis Foundation, Dr Suresh Balasubramanian (@malignantheme, Karmanos Cancer Institute) and Dr Holly Lee (@holly_dldumls, University of Calgary), with the help of Dr Naresh Bumma (@NB191186, Ohio State University), the faculty co-moderator for the session.
In this round of #AmyloidosisJC, we will be discussing a clinical paper that discusses the role of minimal (measurable) residual disease (MRD) in the management of AL amyloidosis.
In this retrospective observation study, the authors presented updated results with extended follow up of the AL amyloidosis patients who underwent end of treatment (EOT) MRD assessment by multiparametric flow cytometry (MFC) described in a previous publication in 2017.
To establish whether clearance of clonal plasma cells at EOT using sensitive and uniform MFC is associated with improved OS
Of the original 173 patients with newly diagnosed AL amyloidosis patients (from their 2017 study), 82 patients who had MRD testing at EOT using sensitive and uniform MFC were included in this follow up publication.
84% of the patients underwent autologous stem cell transplant as first line therapy (relevance: consider inherent selection bias to include primarily transplant eligible patients who are generally fit and do not have extensive baseline organ involvement )
For MFC testing, reported sensitivity was 1×10-4to 2×10-5, depending on the number of analyzed events, phenotype and DNA index
A total of 500,000 live cellular events were set as a target per exam (median gated events achieved 489,922, 25–75% IQR 469,765–493,662)
MRD and hematologic response:29% (24) had negative MRD, and 71% (58) had positive MRD at EOT. 19.5% (16) had CR, 46.3% (38) had VGPR, and 28 (34.1%) had less than VGPR .
Patient outcomes (median 4.6 year follow up): Among≥VGPR patients, MRD- was associated withimproved PFS compared to patients with MRD+ (3-year PFS 88% vs. 46%, p=0.003), particularly among patients who achieved a complete response (3-year PFS 100% vs. 33%, p=0.001). In contrast, this difference in PFS advantage in VGPR/MRD- compared to those who achieved VGPR/MRD+ did not reach statistical significance (p=0.14)
OS difference was not seen between MRD- and MRD+ groups (3-year OS 96% vs. 84%, p=0.17)
MRD- compared with MRD+ among deep responders was associated with lower level of involved light chain (involved free light chain, median 1.1 vs. 1.7mg/dL; p=0.02) and higher frequency of renal response (100% vs. 68%; p=0.005) . When assessing independent organ function, this difference was not evident in cardiac response Conclusions:
Conclusion 1. Despite the retrospective nature of this study with the inherent selection bias to include primarily transplant eligible patients, this work aims at offering novel, robust surrogate endpoint for the design of clinical trials, as well as for optimizing individual patients’ treatment
Conclusion 2.There may be value in bone marrow biopsy/aspirate at end of therapy in AL amyloidosis patients who achieve VGPR/CR. Presence of MRD is associated with reduced PFS in this group of patients.
Conclusion 3. The sensitivity of the current standard assay for serum free light chain detection does not discern between MRD positive vs negative among VGPR/CR patients.
Conclusion 4.This study is notable for presenting one of the largest patient cohorts for end of treatment MRD assessment and applying uniform flow cytometric techniques.
Discussion: MRD assessment in AL amyloidosis is not yet standardized. Of interest, a study using next generation flow for MRD assessment found that 5 out of 12 MRD positive cases had very low residual tumor burden (<3×10-5), which would have not been detected with lower sensitivity assays (Kastritis et al. 2018). This paper assessed 20 AL patients with hemCR. 8 out of 20 patients were MRD(-). 2 out of 8 patients who had ASCT as primary therapy achieved MRD(-) status, versus 6/12 (50%) patients who did not have ASCT as primary therapy (p = 0.264). In two cases aberrant cells were detected at levels between 10−5 and 10−6 Their reported median sensitivity level of next gen flow was 2.3 x 10−6 (range: 2 × 10−6–3.1 × 10-6)
This is not surprising, as in the myeloma literature, 25% of MRD neg cases by conventional MFC were found to be MRD positive by next gen flow (Flores-Monteroet al. 2017)
We do not have studies that inform us how best to manage/ monitor patients deep hematological response based on their MRD status
How does MRD status guide frequency of follow up of patients after therapy?
If a patient initially achieves MRD neg CR but then progresses to MRD positive CR on repeat follow up, does this indicate progression/ requirement for treatment?
What is the role of transplant in achieving MRD negative status? The impact of daratumumab in achieving MRD negative status? As per our discussion from last week, looking forward to upcoming ISA abstract from @vsanchorawala regarding role of transplant in this topic!
Does time to MRD achievement matter and if so, what is the optimal time to assess MRD in AL amyloidosis? Interesting report by Muchtar et al. 2019 in Leukemiajournal, looked at not only the depth of response (in this case nadir iFLC <2mg/dL) but also the impact of time to nadir iFLC on patient outcomes. Patients whose nadir iFLC occurred after 12 months from EOT had significantly longer PFS and OS compared to patients who reached nadir before 12 months. This raises the question as to whether there a role for MRD assessment not only at EOT but also further out from EOT.
Obviously, there are many questions related to the utility and usage of MRD testing in AL amyloidosis – looking forward to the journal club where we can explore this further! -J.Zonder,MD UPDATE 12/1/19 @ 10:19 pm: link to transcript of tonight’s twitter discussion CLICK HERE.
Hello to December in just days… Big Month of my 10 year Myeloma diagnosis!
CA had a crazy winter storm the last few days! Snow in areas that rarely get snow! So we took a drive today. Will be back with some really awesome pics!
Hope you had a wonderful Thanksgiving with your loved ones. We did.
I’ll be back to share some super fun pictures :))
Yes my BIG 60th Bday came and went, had several wonderful surprises at home, but no BIG GIANT celebration… I’ll post some pics on my next Dec post.
Thanksgiving came and went, and had a wonderful little family dinner at home… will post a pic in my next post also.
But what was the BIG beautiful news in all of this, was the incredible SNOW STORM So Cal had. So many of you reading this will be, ya ya big deal… Snow. But for So Cal, this was a Winter Wonderland experience for all of us. Not often the snow level gets down as low as it did for this storm. It was fun to experience, but also a reminder to me that I wouldn’t, couldn’t live in super cold weather at this time in my life.
So caregiver Chris and I loaded Jim in the car, and took a quick drive to the local mountains for a sightseeing trip. I did worry, what if the road closed, what if a storm moved in quickly, what if we got stuck somewhere as so many drivers were experiencing. Any of those would be disastrous with our medical complications… But I tossed caution out the window, and off we went. At one point the opposite side of freeway suddenly had zero cars and traffic, for miles and miles… I suspected my worst fears had come true: maybe the freeway was closed due to snow and ice! We were going to be stuck! Have you seen the news reports of freeways at a dead stop with thousands of cars going nowhere! People stuck in their cars for hours and hours! I always wonder what they do for heat or a/c or supplies or going to the bathroom! Truly one of my greatest fears since both our diagnoses!
Turned out HazMat closed the freeway for some sort of hazardous spill, and it was cleared up when we returned on that side. Thankfully, we made it to the beautiful snow covered hills and back with NO drama!
Of course before we went, I had to wait for my lower GI system to clear to be able to go on this little road trip, and couldn’t eat or drink before or during the tour, but that’s the price I’ve learned to pay for any event I want to experience. They say, get out and have fun. Just go Julie. Live Life. Be Happy. Do Things. Don’t let all the medical issues limit your life. Ya Ya… few can fully understand the hindrances I have and what prevents me from doing much at all… I also think friends and family have “cancer fatigue”, where they are tired of hearing of my status, side effects, how my life has changed, and how battling incurable cancer for 10 years has affected me so deeply. I think I’ll write a pity party on that, next blog :))
In the meantime, enjoy these beautiful snow drive pictures!
So much snow everywhere!
This is So Cal! Seriously!
Caregiver Chris and me
at the shoreline!
This lake is usually full of boaters and seadoos!
Lucky us, beautiful drive accomplished
Welcome to December everyone! Hope you can enjoy and not stress over the holiday busyness! All our medical stuff has so changed my ability to do things, and therefore… I have had to accept my inability to do what I used to do. So cheers to hot chocolate, spiced cider, a crackling fire, friends and family, and no malls for me :))