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Home My StoryMedical Updates September 2021 Updates: Two Years Cancer-Free, Actually

September 2021 Updates: Two Years Cancer-Free, Actually

by Maggie Jones

If my cancer journey is taught me one thing, it’s that nobody really knows anything. Doctors and scientists are trying their best but, no matter how authoritative they appear, you are the only one who really knows what’s going on with your body.

(For the record, my cancer journey has taught me way more than one thing.)

My latest brain scans from this week show continued stability and my primary neuro-oncologist finally said he believes all four lesions are radiation necrosis. He did make a point of acknowledging that “I told him so” which is why he’s my favorite oncologist.

Since my body scans have been consistently clear, this great news means that I’ve officially been cancer free for two years!

Holy smokes.

Obviously, brain radiation necrosis is no joke. It’s sort of a bummer that it hasn’t improved much but mostly miraculous that it hasn’t gotten worse.

What makes me giddy excited about this result is that my doctors are now on-board to let me reduce my drugs as much as I can in balance with managing my aphasia and seizures. I’m getting the impression that they had given me palliative treatment and realize that I might actually be alive for awhile.

It’s been almost exactly a year since my first seizure and starting dexamethasone. I cannot express how excited I am by the idea of stopping. I need to taper slowly to minimize withdrawal but today I took 75% of my normal dose. Fingers crossed.

I’m convinced I can keep my neurological symptoms in check with HBOT, exercise, meditation, and all those good treatments.

A year of steroids

On the left, this week a year ago. On the right, me today. In between: 4mg of dexamethasone a day. No change in diet except to increase weekly water fasting from 1 to 2 days. Also, I took up jogging. My insides feel worse than my face looks.

Finally, I turn 43 next week, guys! Insane to think that I was never supposed to get past 40. No complaints.

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15 comments

Lisa C Hubbard September 12, 2021 - 5:16 pm

Please consider looking into boswallia serretta. I am using it. I also have brain necrosis from srs. I have made one year this month with no more tumors and two year mark from fining brain mets is dec. the boswallia has been studied for reducing edema in brain during and after radiation. They were able to reduce steroids. It has done a lot for me. I quite the steroids very quickly after my second tumor reoccurrence in brain and srs.. I was also supposed be dead now according to the doctors, what do they know? Keep on keeping on. Your story give people hope.

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Maggie Jones September 12, 2021 - 5:30 pm

Thank you so much, Lisa!! You are an inspiration! Boswellia has been a regular supplement for me – maybe it was your recommendation? I’ll definitely take a look at increasing my dosage while I quit the steroids – thank you! Specific to inflammation, I’ve also been taking berberine, turmeric/ curcumin, resveratrol, and cat’s claw while eating lots of turmeric, ginger, and other spices – along with my daily green tea.
Thank you so much for sharing your amazing story! You’ve really motivated me today!

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Lisa C Hubbard September 12, 2021 - 6:24 pm

Thank you. I will look into those supplements also. Anything to stay off dex.

Sorry for the double comment. It’s the first time I have ever commented on a blog. I didn’t see my remark so I thought I did something wrong. I have felt very strongly about connecting with you about bosswellia. I wish the doctors knew more about it. I had to my neurosurgeon about it and he was very interested.
Thanks for your sweet reply. You are wonderful and your strength is simply amazing. You make me want to try harder than I have.
Lisa

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Lisa C Hubbard September 12, 2021 - 6:18 pm

Maggie,
Way to beat the odds. Your journey and attitude are nothing short of amazing. You are inspiring. My story is similar to yours and at times I struggle greatly. It’s for sure the doctors are not always correct with their prognosis. I will hit one year since last tumor death this month and December is two years since diagnosis of first brain met. Like you, I beat their expectations.

The supplement Boswell is serrata has been studied to help reduce the use of dexamethasone. I have been having very good luck with it, so in case you haven’t come across this in your journey, I decided to share it. I know first hand the misery of dexamethasone and moon face. I barely recognized myself after a couple months on it during treatment for the first tumor found. Good luck getting off it. I found B.S. very useful when I got off steroids after the second reoccurrence.

Your posts are wonderful. I only discovered your blog a few days ago. I am quite happy to check your blog today and discover your great news. I have to believe you give all of those who you reach hope for a longer life.

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Lucy September 16, 2021 - 12:50 pm

Hi Maggie,

Im back to say I’m doing a little two year dance for you (in my head as I’m taking a countryside walk). I’m so pleased for you and thought I’d firstly add some hope from one of my wonderful chemo crew she is mTNBC like me and had brain mets to the point she couldn’t talk she had the same rads as you and had just moved from atezolizumab and nab Pax to just the immuno after two and a half years Ned!!! She hasn’t supplemented or changed her diet but I have to say the immuno and rads seem to be a golden key to some people brain mets which is fabulous!

I tried to email but couldn’t get through with my random phone set up about my rads. So in my world I’m officially NED had my PET-CT scan and nearly fainted at the results. Obviously they biopsied my mastectomy and that was all NED too woo!!! I had five days low dose radiotherapy to my sub clavicle which at the time didn’t hurt but made me super sleepy as I was still on atezolizumab and nab Paxil (my choice to catch any circulating tumours) I’ve had three rounds of the immuno chemo and am now off treatment on a watchful wait. I think I said before I lost it when this was mentioned as treatment is a lovely security blanket and now it’s gone!!! My professor said that with a complete response it can last for years so she is keen to now over poison an otherwise healthy body (thanks prof not sure how to take that!). So this takes me to a year NED so I’m off to Paris for a week to celebrate!

What I will say every doctor, professor, surgeon, nurse and receptionist I have spoken to (there are slot with the twice weekly visits) have agreed on one thing a positive attitude helps more than anything and I think that’s something we all share. I plan on getting back on the supliments as I wanted to let the treatment do it’s thing with the rads and continue meditating and eating well.

I feel for you ladies the dex is horrible I put on 6st as I had to eat constantly and was angry all the time! But it has its place I guess and to have our lives saved we take these other cons! I’m on antibiotics for a cellulitis (mild) infection on my port and they make me emosh but luckily they seem to be working. We live in an amazing time with all these treatments both alt and con we have ways to connect like never before and for that I’ve hit nothing but gratitude!

Keep on sharing your amazing story I direct everyone whose diagnosed your way. Keep on shedding the love, light and positivity like confetti it’s contagious. Unicorns do exist as you are living proof.

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Maggie Jones October 3, 2021 - 5:32 pm

Lucy! This is so amazing! Your story just fills me with so much joy! So much hope for everyone who reads it. You are truly an inspiration!

You’ve been through so much but I can only guess the half of it. I can’t wait to see where your journey takes you – starting with a fabulous time in Paris!

Much love and gratitude from the bottom of my heart!
Maggie

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Jeni September 26, 2021 - 1:46 am

We’ve been missing you on Instagram. Will you be coming back? Thanks for the updates! Always rooting for you and thank you for sharing all your much needed wisdom.

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Maggie Jones October 3, 2021 - 5:35 pm

Hi Jeni! Thank you so much for the kind words! I *do* intended to get back to Instagram, although maybe not as much as before. The break from socials as been fantastic but I miss you and the community too much to stay away!!

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Tomas October 3, 2021 - 11:30 am

Hi Maggie,

I’ve been recently diagnosed with Grade III Anaplastic Astrocytoma (Brain Cancer) and had surgery 7 weeks ago where they removed 99% of the brain tumor mass. I’ve done a lot of research and reading since..

I’m just curious, when you mention you are in remission, and 2 years cancer free, does that mean that there are no detectable tumor masses in your body anymore? But – provided you would start eating a lot of sugar and letting your good habits slide – then recurrence could be a possibility (presumably because there are a lot of infinitessimally small cancer cells floating around in the body just waiting for their chance to cluster again)?

It’s still a bit unclear to me what the difference is between remission and cure. If there’s no more detectable tumor masses that pretty much means you’ve been cured?

Kind regards,
Tomas

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Maggie Jones October 3, 2021 - 4:56 pm

Hi Tomas! First, I’m so terribly sorry to hear what you’ve been going through but it sounds like things are going relatively well! And taking charge of your treatment with your own reading and research will make all the difference!

You ask a great question what to call my sitch – the same one I’ve asked my doctors. I have no cancer cells that can be detected using CT or PET and my tumor markers are all normal. In Hong Kong they called this “complete remission” or “complete response.” When I got to SCCA they said they don’t use “remission” and would call it “no evidence of disease.” I don’t like that because I have obvious evidence – the scars in my lungs, necrosis in my brain… I’ve heard the term “no active disease” and like that. “Cancer free” is my usual. One thing I know I’m not, though, is “cured.” My cancer is incurable and, like you say, those cancer cells are still out there waiting for their chance to cluster again. On the bright side, just about every human on this planet is in the same position.

But to your point, I think you nailed it: If I go back to the life that gave me cancer in the first place, it will almost certainly come back. I’ll never have chips and margaritas again. But that’s okay. That part of me died back when it was expected. I’m crazy lucky to have this part of me that loves organic veggies, lol.

My hope for you is that that last 1% of detectable cancer dissolves away. You will always be deeply affected by the experience but hopefully you find a way to leave the trauma behind and take the lessons forward. You are going to inspire so many others!!

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Jonathan Hess October 12, 2021 - 6:32 pm

Hi Maggie,
Thank you for all that you do and I’m overjoyed at your health status. I particularly love your diet ideas and book recommendations(I’ve read them all and they have helped change my view and understanding of life). It seems to me that life is what we make of it and destiny is won by sweat and tears and I love your tenacity and search for truth.
Please keep it up!

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Maggie Jones October 12, 2021 - 8:59 pm

Holy smokes, Jonathan! Thank you so much for the kind worlds. “Life is what we make of it” if exactly how I feel – I just don’t put it as beautifully as you.
Sending so much love and joy your way!

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Sophia Rose November 3, 2021 - 2:39 am

Dear Maggie,

Your story brings hope to so many. I haven’t stopped reading your posts. I wish you all the best and for your health to only get better and stronger!!

If you have any knowledge about lymphoma and fasting and plant based diet, would you please share?

Desperately trying to do what I can to help my situation. Thanking you.

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Maggie Jones November 4, 2021 - 9:32 pm

Hi Sophia Rose!
Unfortunately, there hasn’t been much research that I’m familiar with for liquid tumors, although the healing power of fasting seems to transcend all illnesses. As far as a plant-based diet, remember that, by definition, it’s not vegan and can include up to 5-10% of calories from animal products. I just highly highly recommend avoiding factory meats and dairy products.
I’m sending you tons of love for wild success on your healing journey!!

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Sophia Rose November 5, 2021 - 3:57 pm

Thank you so very much. It’s a tough gig. I’ll keep searching. Take care.

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