Hello and Happy New Year to you all!
I hope this finds you and yours well.
First off, thank you to all who were curious or concerned for writing/emailing or calling to see how I am/was over the past year, and also thanks to those who just trusted that no news is good news - such is the case for me! I will cut to the chase and report that I am doing so well that I almost, yes almost, forget that I apparently “have” cancer!! This is fabulous news following the last post, which I just reread = holy crow, thankfully I climbed out of that hole.
I say apparently and use quotations on "have cancer", because I still refuse to own cancer or have it own me; and perhaps that, along with all the meds, supplements, treatments and overall good health/luck, I am happy to report that I am “in remission”.
Again, why the quotation marks? Well it’s kinda complicated, or maybe it’s super simple! I have to rewind back to April to have this story make any sense.
Back then, with the M protein raising it's ugly head and the Free Light Chains climbing into uncomfortable zone, I reluctantly decided it'd be best to go back to the chemotherapy I had done previously, a triple drug plan referred to as CyBorD (cyclophosphamide, bortezamib and dexamethasone). It worked before at lowering the numbers down to such small numbers they were unmeasurable then undetectable. But alas, myeloma is not curable, just treatable, and so after a few months off of treatment, it came back. Anyway, I faced 9 months of this, having decided for the second time to defer the stem cell transplant for a time when it seemed more appropriate. So, 9 months of 6 hour weekly trips to Kamloops for the 15 min appointment to get the bortezamib injection (subcutaneously), 9 months of weekly blood tests. 9 months = 36 weeks, 36 trips, 36 blood tests. ugh. These trips also required getting a driver, so 36 volunteer drivers. I had inquired at the last round if there was any chance I could have these injections done in Lillooet; no, can't be done, I was told. 36 weeks of feeling like crap for 3 or 4 days to varying degrees, and one good day of which one was the trip to Kamloops. Dizzy from all these numbers yet? Imagine how I felt!
This wasn't quality of life, though it could have been wayyyy worse for sure, but this still didn't seem to make sense to me considering that the myeloma had yet to make me feel ill or cause me harm as far as I could tell; only the drugs had. Yes, we are trying to prevent harm by doing these treatments, but where's the balance? So, once again, my Aries self could not rest easy with this and I took the initiative to research my choices.
I’d always been told that I would be offered a drug in pill form named Revlimid aka lenilidomide after the 9 months of CyBorD (9 months since studies show the body can’t take more than that) or post stem cell transplant, which they refer to as a maintenance drug. Within only a month of CyBorD treatments, the myeloma cells were again so low they were unmeasurable, and I thought : why not skip ahead and try the Revlimid? The main attraction being that it's in pill form, so I could take it at home! Considering the drives, the volunteers, the potential and real road closures and detours due to mud slides and forest fires, on top of the half week of yuck, I needed to know if this was something I could do. My naturopath, Dr. Adam McLeod, was encouraging, saying that it was quite a well tolerated drug (despite the horror stories I’d read on the internet!), that it works well for many of his patients and was definitely worth a try especially considering that I was facing another 32 weekly trips to Kamloops. He had recommendations for supplements and natural treatments that would mitigate side effects as well as work synergistically with Revlimid. I felt hopeful once again. My oncologist however was hesitant, only because Revlimid was then considered a second line treatment, not front line and so he had never prescribed it to a patient in my situation. After I basically insisted that I wanted to try it, and when he really understood how my quality of life was not great for one due to travel time and cost, he went to bat for me, consulting my hematologist, who agreed it was worth a try and then applying for permission from the BC Cancer Agency, which was successful. The timing couldn’t have been more perfect: that month, the BC Cancer Agency announced that Revlimid could now be used as a front line agent.
I’m so happy to say that now after 7 months on this drug, I am technically in remission = mylema cells are undetectable and the Free Light Chains are within normal range. Unlike on tv or in movies, my doctor never rushed into the examination room for my monthly appointments to say “Congratulations Gillian, you’re in remission!” No, it took a few months of my reading my own blood test results where the pathologist reports time and time again : “Normal pattern. No monoclonal bands seen” for me to finally get the guts up to ask my oncologist, sooo, am I in remission? He hesitantly said yes but that it’s a drug induced remission, meaning that the myeloma cells would raise their ugly heads and the free light chain numbers would climb if I stopped taking the chemotherapeutic drug I take nightly for 3 weeks on, 1 week off. That's why I say "remission" with quotation marks, rabbit ears. Sigh...myeloma is not curable, so I keep hearing. Just treatable.
I am experiencing only a few minor side effects despite the many horror stories from Dr. Google! Mainly, for me and so far, it’s caused minor constipation, some hives, and a mild tingling in my lips on occasion. The most common side effects are tiredness, which I only experience in the evenings, nerve damage / tingling in extremities, digestive issues and low platelet counts. So far, my platelets are just a titch below normal, and nothing to be concerned about. The worst part for me for which I am grateful, are the monthly interviews I have to undergo by my oncologist, the pharmacist and online...you see, Revlimid or lenilidomide is a cousin of thalidomide. For those of you who might be too young to know or remember, "the thalidomide disaster is one of the darkest episodes in pharmaceutical research history. The drug was marketed as a mild sleeping pill safe even for pregnant women. However, it caused thousands of babies worldwide to be born with malformed limbs." Holy crow.
Needless to say the pharmaceutical company makes it absolutely certain beyond a doubt that I am not pregnant (monthly pregnancy tests, yes even at my age), that I am not sharing the drug with anyone (seriously), not giving blood and so on. I’ll take the monthly interviews over the weekly trips to Kamloops and the half week of feeling like crap, and the long term effects of taking those drugs. The elephant in the room is what the long term effects are of taking this drug at full dose, and as is with so much of life, we shall have to wait, do our best, and see.
Cancer sucks, in my case not because cancer in itself has ever caused me harm beyond the psychological effects, but the weapons used to fight it have. I am lucky in that so far as we know, no real damage has been detected. I am immensely grateful to chemistry however; this drug, along with the supplements listed below, my own healthy foundation, lifestyle, pure luck and sheer refusal to succumb to the C word, has allowed me to lead a more or less normal life while also fighting this disease with relative ease, so far. I can’t express how happy I am for this and how lucky I feel, especially when I read on various myeloma support group blogs and Facebook group pages how much suffering, and deaths there are due to Multiple Myeloma. For many, Revlimid doesn’t work. For many, it causes many horrible side effects. I’ve posted my positive experience to give light to others, but it’s time for me to stop reading these horror stories while my heart goes out to those who suffer under myeloma and to their caregivers.
Prognosis? No one knows, but I could be on this course for years to come, hopefully without experiencing more severe side effects. Some have been on Revlimid successfully for a decade or more. All of us myeloma patients await new upcoming treatments that are said to be on the brink of a cure, or at least less harmful treatments, and while I am doing well now, that could change anytime. And do I remain in gratitude and in hope that my “luck” continues. My naturopath checks in with me every 3 months. I am also so fortunate to get monthly blood work and doctor’s appointments (now by video link from the Lillooet Hospital!), a little bit of a formality now, but I’ll take it. I'm on close watch, and I'm grateful once again to be Canadian.
Well back to how I am and let’s leave medical definitions of remission and doctors’ hesitations at the hospital, and focus on what matters. What matters to me is that I am leading a fairly normal life now, once again: my energy levels are great, and I feel incredibly healthy. My herbal products business continues to keep me busy, I am back to teaching Nia which helps keep me happy and in shape, and I even have a part time job-job, working joyfully at Abundance Bakery in town. I'm able to be present as a more or less "normal mom" for our son Jamie (normal is not a word I would normally be proud to use!) and that is really all I could ever ask for post diagnosis. Jamie, or James as he now prefers, is 13, tall, healthy and thriving, attending high school and excelling in sports (he just won gold at his first wrestling competition), and enjoying a regular teen social life now that we are part time in town.
For now, this is good, for now, this is perfect. Again, I hope this finds you well and enjoying life however you can. I'd love to hear your story if you want to share it...enough about me already! Aren't you grateful I don't post regularly?!
much love to you all,
gillian
List of supplements
Curcumin - Curcummatrix
Vitamin D
Indole 3 carbonyl
EGCG
Reishi
Mistletoe injections (subcutaneous)
Vit B12 injections (intramuscular)
Low dose Naltrexone
Expense wise, it costs approximately $500/month for all the prescriptions, supplements, injections (see below)~ thanks again to those who have contributed to the fundraising I did last year for the now moot natural treatment plan which has made taking these things possible.
Back then, with the M protein raising it's ugly head and the Free Light Chains climbing into uncomfortable zone, I reluctantly decided it'd be best to go back to the chemotherapy I had done previously, a triple drug plan referred to as CyBorD (cyclophosphamide, bortezamib and dexamethasone). It worked before at lowering the numbers down to such small numbers they were unmeasurable then undetectable. But alas, myeloma is not curable, just treatable, and so after a few months off of treatment, it came back. Anyway, I faced 9 months of this, having decided for the second time to defer the stem cell transplant for a time when it seemed more appropriate. So, 9 months of 6 hour weekly trips to Kamloops for the 15 min appointment to get the bortezamib injection (subcutaneously), 9 months of weekly blood tests. 9 months = 36 weeks, 36 trips, 36 blood tests. ugh. These trips also required getting a driver, so 36 volunteer drivers. I had inquired at the last round if there was any chance I could have these injections done in Lillooet; no, can't be done, I was told. 36 weeks of feeling like crap for 3 or 4 days to varying degrees, and one good day of which one was the trip to Kamloops. Dizzy from all these numbers yet? Imagine how I felt!
This wasn't quality of life, though it could have been wayyyy worse for sure, but this still didn't seem to make sense to me considering that the myeloma had yet to make me feel ill or cause me harm as far as I could tell; only the drugs had. Yes, we are trying to prevent harm by doing these treatments, but where's the balance? So, once again, my Aries self could not rest easy with this and I took the initiative to research my choices.
I’d always been told that I would be offered a drug in pill form named Revlimid aka lenilidomide after the 9 months of CyBorD (9 months since studies show the body can’t take more than that) or post stem cell transplant, which they refer to as a maintenance drug. Within only a month of CyBorD treatments, the myeloma cells were again so low they were unmeasurable, and I thought : why not skip ahead and try the Revlimid? The main attraction being that it's in pill form, so I could take it at home! Considering the drives, the volunteers, the potential and real road closures and detours due to mud slides and forest fires, on top of the half week of yuck, I needed to know if this was something I could do. My naturopath, Dr. Adam McLeod, was encouraging, saying that it was quite a well tolerated drug (despite the horror stories I’d read on the internet!), that it works well for many of his patients and was definitely worth a try especially considering that I was facing another 32 weekly trips to Kamloops. He had recommendations for supplements and natural treatments that would mitigate side effects as well as work synergistically with Revlimid. I felt hopeful once again. My oncologist however was hesitant, only because Revlimid was then considered a second line treatment, not front line and so he had never prescribed it to a patient in my situation. After I basically insisted that I wanted to try it, and when he really understood how my quality of life was not great for one due to travel time and cost, he went to bat for me, consulting my hematologist, who agreed it was worth a try and then applying for permission from the BC Cancer Agency, which was successful. The timing couldn’t have been more perfect: that month, the BC Cancer Agency announced that Revlimid could now be used as a front line agent.
I’m so happy to say that now after 7 months on this drug, I am technically in remission = mylema cells are undetectable and the Free Light Chains are within normal range. Unlike on tv or in movies, my doctor never rushed into the examination room for my monthly appointments to say “Congratulations Gillian, you’re in remission!” No, it took a few months of my reading my own blood test results where the pathologist reports time and time again : “Normal pattern. No monoclonal bands seen” for me to finally get the guts up to ask my oncologist, sooo, am I in remission? He hesitantly said yes but that it’s a drug induced remission, meaning that the myeloma cells would raise their ugly heads and the free light chain numbers would climb if I stopped taking the chemotherapeutic drug I take nightly for 3 weeks on, 1 week off. That's why I say "remission" with quotation marks, rabbit ears. Sigh...myeloma is not curable, so I keep hearing. Just treatable.
I am experiencing only a few minor side effects despite the many horror stories from Dr. Google! Mainly, for me and so far, it’s caused minor constipation, some hives, and a mild tingling in my lips on occasion. The most common side effects are tiredness, which I only experience in the evenings, nerve damage / tingling in extremities, digestive issues and low platelet counts. So far, my platelets are just a titch below normal, and nothing to be concerned about. The worst part for me for which I am grateful, are the monthly interviews I have to undergo by my oncologist, the pharmacist and online...you see, Revlimid or lenilidomide is a cousin of thalidomide. For those of you who might be too young to know or remember, "the thalidomide disaster is one of the darkest episodes in pharmaceutical research history. The drug was marketed as a mild sleeping pill safe even for pregnant women. However, it caused thousands of babies worldwide to be born with malformed limbs." Holy crow.
Needless to say the pharmaceutical company makes it absolutely certain beyond a doubt that I am not pregnant (monthly pregnancy tests, yes even at my age), that I am not sharing the drug with anyone (seriously), not giving blood and so on. I’ll take the monthly interviews over the weekly trips to Kamloops and the half week of feeling like crap, and the long term effects of taking those drugs. The elephant in the room is what the long term effects are of taking this drug at full dose, and as is with so much of life, we shall have to wait, do our best, and see.
Cancer sucks, in my case not because cancer in itself has ever caused me harm beyond the psychological effects, but the weapons used to fight it have. I am lucky in that so far as we know, no real damage has been detected. I am immensely grateful to chemistry however; this drug, along with the supplements listed below, my own healthy foundation, lifestyle, pure luck and sheer refusal to succumb to the C word, has allowed me to lead a more or less normal life while also fighting this disease with relative ease, so far. I can’t express how happy I am for this and how lucky I feel, especially when I read on various myeloma support group blogs and Facebook group pages how much suffering, and deaths there are due to Multiple Myeloma. For many, Revlimid doesn’t work. For many, it causes many horrible side effects. I’ve posted my positive experience to give light to others, but it’s time for me to stop reading these horror stories while my heart goes out to those who suffer under myeloma and to their caregivers.
Prognosis? No one knows, but I could be on this course for years to come, hopefully without experiencing more severe side effects. Some have been on Revlimid successfully for a decade or more. All of us myeloma patients await new upcoming treatments that are said to be on the brink of a cure, or at least less harmful treatments, and while I am doing well now, that could change anytime. And do I remain in gratitude and in hope that my “luck” continues. My naturopath checks in with me every 3 months. I am also so fortunate to get monthly blood work and doctor’s appointments (now by video link from the Lillooet Hospital!), a little bit of a formality now, but I’ll take it. I'm on close watch, and I'm grateful once again to be Canadian.
Well back to how I am and let’s leave medical definitions of remission and doctors’ hesitations at the hospital, and focus on what matters. What matters to me is that I am leading a fairly normal life now, once again: my energy levels are great, and I feel incredibly healthy. My herbal products business continues to keep me busy, I am back to teaching Nia which helps keep me happy and in shape, and I even have a part time job-job, working joyfully at Abundance Bakery in town. I'm able to be present as a more or less "normal mom" for our son Jamie (normal is not a word I would normally be proud to use!) and that is really all I could ever ask for post diagnosis. Jamie, or James as he now prefers, is 13, tall, healthy and thriving, attending high school and excelling in sports (he just won gold at his first wrestling competition), and enjoying a regular teen social life now that we are part time in town.
For now, this is good, for now, this is perfect. Again, I hope this finds you well and enjoying life however you can. I'd love to hear your story if you want to share it...enough about me already! Aren't you grateful I don't post regularly?!
much love to you all,
gillian
List of supplements
Curcumin - Curcummatrix
Vitamin D
Indole 3 carbonyl
EGCG
Reishi
Mistletoe injections (subcutaneous)
Vit B12 injections (intramuscular)
Low dose Naltrexone
Expense wise, it costs approximately $500/month for all the prescriptions, supplements, injections (see below)~ thanks again to those who have contributed to the fundraising I did last year for the now moot natural treatment plan which has made taking these things possible.
Hi, Just wanted to confirm that there is life after diagnosis. In August , I will celebrate my 10 year anniversary with only two rounds of Revlimid/steriod. No bad for someone who was told twice that I would be gone within 3 years. Wrote a book about the experience, Unspoken Messages.
ReplyDeleteLike you, I use many whole food organic supplements and visit/consult a naturopath often.
Keep up the good fight and keep posting. I am 68 and spent the day hauling brush and moving about a ton and a half of boulders. Life is indeed good.
Richard D. Rowland
doublerstables@gmail.com