Hi everyone. I hope you all are having a great Thanksgiving weekend.
A few people asked in response to my last post what specifically was the conflicting information I got about my decision to stop or continue treatment. I wanted to take this opportunity to explain a little more about the science behind my illness and treatment.
A short answer to the question about the conflicting information: essentially, my Stanford oncologist first told me I could consider stopping treatment early because I was on a longer and harder regimen than is what typically done at Stanford. So I decided, after careful consideration, to stop treatment. Then, when I went in for my next appointment, she backtracked and said if I could do more I should, since I was originally put on a longer protocol.
So, neither recommendation was necessarily evidence-based, and it perhaps could have been communicated in a better way, since telling me to do more chemo after I had already decided to stop felt kind of like being punched in the face. Anyway, I wanted to make an evidence-based decision, so I since have done a lot of research and reading of the literature (with the help of my physician mom), and have come to a final decision.
First, a little background. My diagnosis is Acute Lymphoblastic T-Cell Lymphoma. I do not have leukemia, since my bone marrow was never involved. I presented with a mediastinal (chest) mass, representing a single premature T-cell of my thymus that mutated into a raging cancer clone of cells, and, unable to stop its own growth, took over and grew into a massive tumor. I was told the entire tumor probably grew in only six weeks. It’s that aggressive.
I have a good prognosis. While the average survival for my cancer is somewhere around 50-60%, this number includes old people, people who died from complications of the chemo immediately, people whose tumors never responded to treatment, etc. When you parse out the people like me, the survival looks closer to 80-90%. My good prognostic factors include:
- My age
- That I did not have bone marrow involvement at diagnosis
- That I did not have abnormal white blood cells in my blood at diagnosis
- That I do not have the Philadelphia chromosome (a fusion of two genes that leads to abnormal cell activity)
- That I went into remission quickly (called rapid early remission)
- That I’ve tolerated the chemo as well as I have up to this point
- That I have not relapsed up to this point
So, yay me.
As time passed from my last dose of intensive chemo in October, I started to feel much better, and it started to feel possible I could handle more. Part of me felt that if I could handle it, I should do it. I want to feel like I did everything I could.
On the other hand, chemotherapy can be really toxic, some drugs more so than others. Some of the drugs I’m taking have the potential to cause long-term sequelae. So, I need to balance the possible benefit—that more chemo will lead to greater survival—with the possible risk of long-term damage to my body.
I spoke to both my Stanford and UCLA oncologists about this, and neither could tell me with certainty how much the extra chemo would impact my survival. Maybe I’d be torturing myself for a 1% greater chance at survival, maybe 5%, maybe 10% . . . there is no research looking at the difference. And really, I’m a person, not a statistic. Either I’m cured or I’m not.
I did more research with my mom on the specific chemotherapy drugs I would be getting in these last eight weeks. Some are worse than others. Some would just be shitty while I was taking them (asparaginase, ARA-C, thioguanine, vincristine), while others could cause significant long-term problems (doxyrubicin, cytoxin).
So, I have decided I will do the final eight weeks of intensive chemotherapy, minus the two most toxic drugs, doxyrubicin (which can cause cardiotoxicity) and cytoxin (which can cause ovarian failure). I’ll start this coming week and finish somewhere around the end of January or beginning of February, depending on if I have any side effects that prolong the treatment.
While the thought of doing more intensive chemo kind of makes me want to shoot myself, this feels like a good decision. I want to live. I don’t want to have any regrets that I didn’t do everything I could.
Wow, good for you, Elana. Bravo. Godspeed.
Elana….I have been following your story from the beginning of your “cancer story” and feel privileged and honored to have the inside scoop on your process.
I have no words that can heal whatever pain you feel right now. (physical, emotional or spiritual), yet I can say without any hesitation, you represent LIFE to me and I mean that on every level.
I encourage you to continue to follow your heart, to listen to your inner voice that I am sure speaks to you daily. Please know you are being supported by countless prayers, positive thoughts and yippppeees for every breath you take, every triumph you experience every day you live.
Many people never face what you have faced and have lived many years. Although your path has been complicated by so many challenges, you are the epitome to me of truly LIVING.
May your remaining months of chemo not disturb your ride too much.
Blessings of Peace,
Kate
Elena,
My heartfelt blessings to you as you experience this next chapter of your amazing story–a story of grace and honesty and such realism. It’s an honor for me to be a witness and I truly hold you dear. Be well.
Robin
My chemo regimen was not nearly as hard as yours, and I, too faced the “continue or not” question. I continued, also concerned about making sure I did all I could. Thank you for explaining your situation, and know that you are being held up in prayer and love as you face this last round. You’ve got this, and we’ve got you!!!
With love,
Moira
Good for you — it’s what your heart tells you in the end and you know that as well as anyone. You go!
Thanks for the science lesson, Elana. Have been thinking of you and checking in. Glad to hear that you made it through the majority of your treatment. There is light at the end of the tunnel!
Sounds like a plan and you have come this far so you know you can handle it. Blessings to you and we will all be here for you, breathing and meditating that things breeze through and you can get on with your life!
Elana,
You are brave and wise! I think the only thing we can do when faced with these kind of “impossible” decisions is to research, trust your intuition and hope for the best possible outcome! I just lost my father after his battle with cancer, there are really no words except to say, Keep fighting the good fight! I will send you healing vibes!
Warm Regards,
Tashina
Dear Elana,
My heart goes out to you in what lies ahead for you in your treatment. You are so brave and courageous! Thank you for sharing your story and giving me/us, your readers, a glimps of your reality. It teaches me so much about the value of life and gratitude and bravery and so much more. I care about you.
Kathy
It sounds like you have done a lot of research and I wish you the best You are strong and have everything aligned in your corner. Be brave and you will come out after this next round stronger We can never give up the fight. Remember you are not a statistic.
First, thank you for taking the time to keep all of us updated. I’m certain there are many times you feel like saying screw that. I look forward to reading your articles and hearing about your progress as I am emotionally attached to your story. As many others have stated, my treatment was not nearly as intense as yours, but as I approach the 12-year mark it’s always good to know from whence I came and be reminded of how precious life is. I know you have no need to hear applause from others, but you truly do inspire me. We in the mental health field (I am a school psychologist), given our giving nature (sometimes to the point of ignoring our own needs), need to stop and take care of ourselves. I’m glad your mom is there for you, I’m there for you in spirit. Good luck with the final stages of your treatment, I would love to hear you speak one day. David
Wow Elana * Glad you are taking the last chemo session…my son had the A.L.L, the Leukemia kind & He had all the chemos you mentioned above, plus, methotrexate & prednisone plus a few more nasty buggers, well u get my point, its a tough protocol you’re on, but thanks for clearing up the difference between your lymphoma & leukemia, I’m Wishing u a Good Speedy Recovery * Sending Lots Of Prayers *
Namaste,
Deb on the Farm.
>^..^<
Elana,
Thank you for letting us know what’s happening and especially for showing us that we DO have a say in what happens with our health care and that knowledge is power when making decisions like the one you have made. May the next couple of months be filled with grace and ease in unexpected (and expected) ways.
Cheryl
Elana, you have had so many people following and praying for you that you have to know that we are all with you again as you finish your last AND FINAL phase of this horrible and undeserving journey you have been sent on. I wish there was a way for you to feel the large collective hug we are all sending to you. God Speed my dear and go kick cancer’s ass for the last time!
Dear Elana,
Though it was a hard decision, I’m sure it’s for the best. This is the final round girl, and you’ll be the winner.
So brace yourself and hold on and you will have the last word, this is 100% sure!
A brand new life is waiting for you my dear Elana and after all this turmoil, all this long suffering, you are the ONE person on earth deserving it fully.
Thinking of you a lot,
Love,
Helene from Switzerland
Glad you evaluated the situation so thoroughly, and nice to know you feel comfortable with your decision!
I’m a bit of a lurker but am still very pleased to have seen that 80-90% number in your post. you seem to have made the best possible decision, which is another thing that makes me smile, as a total stranger who has never met you.
One thing that made me think about one of your previous posts, the one about fear, is that you say the EXACT same things that I’ve heard soldiers say when they get back from war zones and suddenly have to drive, walk around in shopping malls, set alarm clocks to go to work, and do other Normal Stuff. You’re also coming back from a war zone, hon. *hug*
Anyhow, you have no idea who I am, but I’m glad the clouds are parting for you a little for the moment. 🙂
This was a really interesting post. I totally applaud you for seeking more evidence, even when it is such a subjective subject (ie: you!) and probably hard. I’m glad you had your mom to work with on it. I hear that the goal in oncology these days is “Individualized plans” and it seems you’ve managed to create that for yourself (though I sort of feel that shouldn’t be the patient’s job, but anyway). I think you have made such a wise wise choice – using your knowledge, and listening to your heart/energy/soul. Yea you for sure!
Hey Elana, thanks for this post. It’s incredibly informative… these are things you don’t hear about too often. Here’s hoping for the best on your last round of treatment. I’m happy to hear you’re putting everything down on the line and doing everything you can to giving yourself the best and longest future possible. Cheers to your resolve. Take care.
Thinking of you, Elana! Keep your head up and stay as awesome and strong as you are! You can do this!
All the best,
Dina
Elana, thank you for the explanation. You are in my thoughts often.
You are an amazing young lady. I have no doubt you will beat this. Statistically yes, but this horrific chapter in your life will make you an amazing , intuitive, sensitive, physician in the future for all that are fortunate enough to have you guide them through lifes sometimes unbearable hardships. I am sure this is of little comfort to you now, but I too am in the medical field and know when you are past this, you will be able to touch people as only someone that has experienced true despair can do.
I continue to be in awe of your strength. What a hard decision to make and yet you chose the difficult route of more chemo. I will beam you good thoughts each and every day through the next eight weeks and hope you have a wonderful holiday with your family. Know that there are lots of us out here wishing you nothing but the best.
Fondly,
Barb in Minnesota
Thank you for sharing…courage and health to you on this final round. I wish you all the best in these final weeks. You are a different person, and it’s hard to grieve the person you once were, but the other side is near!
Glad to hear you’re staying strong and keeping up the good fight. 🙂
thinking of you <3 and believe in your strength!
Wishing you all the very, very, very best, Elana! All good wishes!
Thinking about you, missing your thoughts and words, and sending positivity and love your way.
Dear Elana,
Just popped by to see how you are, I hope you are faring well with your last phase of treatment; the end is near 🙂 and I hope and pray that 2015 brings you healing in all areas of your life.
Missing your words as ever,
All the best,
Nadia.
Dear Elana
I keep thinking of you and hope the year started great for you…You are an outstanding amazing person and I learn so much from you…thank you so very much…I just woke up, since it is 4am in Germany, because I had a dream about you…I’ll beam you so much strenght, love, hugs and kisses all the way from Germany…take good care Elana
I’ve been sending you thoughts of love, healing, and comfort. Suzanne.
Caring thoughts continue to be sent your way..
Dear Alana,
I am thinking of you every day and wish you lots of courage for those last few days of treatment. I hope that nothing happened to prolong it and that the end really is near!Finally!
And then you can start recovering. Yay!
Sending you warm wishes and healing vibes,
Francesca
Hey Elana,
I check in on your blog like I am checking in on a friend I care about but life hasn’t allowed for more than facebook contact with. I hope you are well. Its been a while and I hope that is for only good reasons. Wishing you strength and praying for your speedy and complete recovery daily.
Best,
Bev
Good morning Elana,
While I was watching “Chasing Life” on television Monday night, I started wondering about how your healing progress is coming along. I’m sending you positive vibes from the angels and magical wellness life-forces. I hope you’re feeling fine and dandy for a 2015 fresh start!
Cheerio,
Melanie
Hello, Elana! A slew of fall and winter holidays have passed since you last posted about deciding to continue with chemotherapy. Been keeping you in my thoughts and prayers (along with family members of several close friends, including a friend’s husband who spent over a month in hospital with pancreatitis; received news that he was discharged today .. a positive step in his long return to wellness). Hoping that 2015 will bring much good health and healing to you .. best wishes for this new year!
Here with you in spirit. Hoping for the best.
Hi Elana. Sending you strenghth and love to kick cancer in its ass and send it to another another planet…far far away from you. Keep strong and keep faith…you are an amazing woman.
You are loved.
Dear Elana,
I do not know what happened but though I am still a subscriber to your posts, I do not receive them any longer. One of my friend whom I had recommended to become one of your subscriber, told me that you have post another message but I did not receive it and I am truly sorry.
Pleeeeeasssse, go on sending your messages to me as I really want to follow up with your recevery and success over cancer. You are an amazing and precious person Elana.
All my loves to you
Hélène (no longer in Switerland but back to France)