I just realized how long it's been since I've updated my blog! My sincerest apologies to those that check in regularly and worried about me. Thank you for caring as you do!
This is one of my all time fave pics of me and RedBear!
Taken by my amazingly skilled and creative photographer friend Kathy B
Taken by my amazingly skilled and creative photographer friend Kathy B
So this month's lab results revealed nothing much new from last month's results. I've kinda "flatlined" at the current levels of Revlimid (5mg) and DexSteroids (20mg) I am on. My IgA went up about 60 points (not huge, but not good) and my M-protein/M-spike went down only .07 points (tiny, but good). This is all quite negligible though. Bottom line... if I want to be more aggressive with bringing my myeloma numbers down, and rid my body of cancer, I will have to double up on my dosage levels pretty soon. At this time, my oncologists are leaving this decision up to me.
Each appointment, we discuss whether I should/could be a candidate for a second autologous stem cell transplant. At this time, both my oncologists feel the outcome would NOT justify the risk of putting me through that again. In other words, they don't think I will reach remission again, and there's really no point subjecting me to the intensity (and potential dangers) of another ASCT.
I will meet with my City of Hope (transplant) oncologist towards the end of the month, and we'll see what he says about all this.
So given the circumstances... what would you do???
Should I just mosey along at the levels I'm at since they don't bother me too much (except dealing with fatigue, intestinal issues every other day, neuropathy, being immune compromised, etc)? Remaining at these lower levels is definitely not quickly obliterating myeloma cells from my body. But raising the chemo levels to do so, will definitely impact my already impacted "quality of life" (and that does concern me).
To some this may not sound like a big deal to double my chemo levels, but I had a severe (life threatening) allergic reaction to higher doses of Revlimid back in 2010, during my initial treatments. I'm not looking forward to the "unknown" future chemo side-effects coming my way.
Currently, I am still able to work a bit (which I still have much passion for!), and I continue to be able to do a fair amount of the things I always did: (hanging with my horses, doggies, kitties, driving my ol Beetle when it's drivable lol, occasional day-trips with friends, and of course enjoying life with my amazing fambam!) Although my energy level is greatly reduced, and to be honest, I really only feel good a few days a week... but I get by, and practice one of my fave mottos:
"Fake it, til you make it" !
My oncologists reassure me at each appointment, that there are several new generation myeloma treatments since my 12/2009 diagnosis. They are confident that if the Rev/Dex combo loses its effectiveness with me, they have other options in the treatment pipeline for me. (And I read voraciously online, so I know what's happening regarding the latest treatment options.) Yay!!! for all the brilliant medical researchers, chemists, oncology teams, pharmacy companies, etc, extending us "Myelomers", lives!!! Thank you!!!
So all this always make me think... what should I be doing with my life?
Status Quo? Stay the course, stay the same, maintain my current "new normal"? Remain in familiar (safe) territory on this low dose "comfort zone"? But unfortunately, this allows Myeloma to continue to multiply within me.
Or is it time to "radically" change my life, and do now what I may not be able to do in the coming months/years... (in other words, get on with the "bucket list", re-do Hawaii, etc!) ... and then get on with increasing/changing chemo levels and types?
I know many feel uncomfortable when I address the "terminal", "incurable" aspect of Myeloma... but to me... it sure would be helpful to have an idea if I am living in ignorance right now regarding my (perceived) longevity timeline. If I could "know" how much or how little time I have left, or how much "usable", feeling-ok time I have left, that might just influence me to make some changes in my current lifestyle, as I naively feel I have tons of time left that I "know" I actually really don't ...
Time to eat some ice cream, or actually brownies sound good, (and not care about fat and calories!) It's going to be beautiful this weekend and me and Dex are headed for our love/hate roller-coaster ride for the next several days!
So tell me, what would you do...
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Each appointment, we discuss whether I should/could be a candidate for a second autologous stem cell transplant. At this time, both my oncologists feel the outcome would NOT justify the risk of putting me through that again. In other words, they don't think I will reach remission again, and there's really no point subjecting me to the intensity (and potential dangers) of another ASCT.
I will meet with my City of Hope (transplant) oncologist towards the end of the month, and we'll see what he says about all this.
So given the circumstances... what would you do???
Should I just mosey along at the levels I'm at since they don't bother me too much (except dealing with fatigue, intestinal issues every other day, neuropathy, being immune compromised, etc)? Remaining at these lower levels is definitely not quickly obliterating myeloma cells from my body. But raising the chemo levels to do so, will definitely impact my already impacted "quality of life" (and that does concern me).
To some this may not sound like a big deal to double my chemo levels, but I had a severe (life threatening) allergic reaction to higher doses of Revlimid back in 2010, during my initial treatments. I'm not looking forward to the "unknown" future chemo side-effects coming my way.
Currently, I am still able to work a bit (which I still have much passion for!), and I continue to be able to do a fair amount of the things I always did: (hanging with my horses, doggies, kitties, driving my ol Beetle when it's drivable lol, occasional day-trips with friends, and of course enjoying life with my amazing fambam!) Although my energy level is greatly reduced, and to be honest, I really only feel good a few days a week... but I get by, and practice one of my fave mottos:
"Fake it, til you make it" !
Birdie cracks me up and always makes us smile!
So all this always make me think... what should I be doing with my life?
Status Quo? Stay the course, stay the same, maintain my current "new normal"? Remain in familiar (safe) territory on this low dose "comfort zone"? But unfortunately, this allows Myeloma to continue to multiply within me.
Or is it time to "radically" change my life, and do now what I may not be able to do in the coming months/years... (in other words, get on with the "bucket list", re-do Hawaii, etc!) ... and then get on with increasing/changing chemo levels and types?
I know many feel uncomfortable when I address the "terminal", "incurable" aspect of Myeloma... but to me... it sure would be helpful to have an idea if I am living in ignorance right now regarding my (perceived) longevity timeline. If I could "know" how much or how little time I have left, or how much "usable", feeling-ok time I have left, that might just influence me to make some changes in my current lifestyle, as I naively feel I have tons of time left that I "know" I actually really don't ...
Did I ever mention that I treated myself to this new tackroom
as my Remission celebration in 2011. Represents so much to me
and one of my all time fave views!
Time to eat some ice cream, or actually brownies sound good, (and not care about fat and calories!) It's going to be beautiful this weekend and me and Dex are headed for our love/hate roller-coaster ride for the next several days!
So tell me, what would you do...
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Julie, what you currently know is that you react badly to a higher dose of Revlimid (so did I), that your oncologists are OK with moseying along with your present regimen and not in favor of another transplant, and that you are tolerating the present level of Rev and Dex. I am treated at M.D. Anderson and am in a very similar situation. My MM oncologist is in favor of my moseying along. There are new drugs available for us when the necessity arises. Please be sure to share with us what your transplant oncologist at COH recommends. Love the picture of you and RedBear!
ReplyDeleteThank you "Lovey" !!
DeleteJulie,
ReplyDeleteI am so glad to read this update....I have been terrible about updating my blog and you are inspiring me. It is so hard to make decisions on what to do next. It is good to know that there are a number of options out there for us. Velcade stopped working for my and high dose thalidomide did nothing but make me feel awful. I am now on 25 mg of Revlimid and dex. Doing OK but it is too soon to know if there is any improvement. You are always in my thoughts and prayers.
Thank you Carole!!
DeleteOh Julie, some tough decisions for sure. I do believe that quality of life matters, and any treatment that can be done to hold the myeloma at bay, or beat it back, must be something you can tolerate. We caregivers know that our loved ones are amazing with what they already tolerate on a daily basis with this cancer, even in remission! Life-threatening allergic reactions are terrifying and should be taken very seriously! Ernie has always tolerated 10 mg of Rev just fine, with bouts of itching and sleeplessness being his biggest nuisances! He has been on it for almost 3 1/2 years, every day with no breaks, except when he had shingles and pneumonia. For him, it is not paired with Dex, so everyone is different. There are new options out there, which is encouraging, but experimenting with how your body will react is scary. There may however be a chance, that one of the newer medications would not cause the same bad reaction as Rev did, but would get your MM under control again. You don't want your numbers to keep going up and possibly cause bone lesions, etc.
ReplyDeleteHow many hours are you trying to work? Are they flexible as far as you doing what you can, when you can? Since that is something you love, it would be nice to hold on to a bit of it, only if you are not more stressed and exhausted by it.
I have no answers, but will be praying for you, your family, and doctors to have wisdom in choosing your best options. It never hurts to plan a trip or two to look forward to (and buy insurance in case you aren't up to it!). I highly recommend an Alaskan cruise if you've never taken one! We are headed to Vegas, the Grand Canyon, Hoover Dam, Lake Meade, etc. at the end of April, Lord willing! We are very excited and hope things stay calm with the MM so we can do it! I am really looking forward to Michael Jackson One by Cirque de Soleil!!
Thanks for sharing your concerns...we are here for you any time! Much love,
Linda & Ernie (EZ)
Thank you Linda!!
Delete