Wednesday, November 30, 2016

progress and next steps

I had an MRI a couple of weeks ago and got the results last week. There has been slight progression in all three tumours in the brain.

That's the bad news.

The good news is that there are no new tumours and that my spine and cerebrospinal fluid remain clear, with no detectable cancer. This means that the Herceptin must be doing something for things to be progressing relatively slowly.

We just have to figure out how to make it better at its job.

There is very little research, when it comes to leptomeningeal disease (or leptomeningeal carcinomatosis), so in lots of ways we are making things up as we go along. The first thing we are going to do is increase the dose of Herceptin and to try and slow the drug down as it enters my brain.

At tomorrow's treatment, we are going to increase the dosage from 60mg to 80mg. The Ommaya Reservoir only holds 60mg and at the end of treatment, the oncologist usually empties it by pumping (really just pressing down on it a few times). Tomorrow, once it is empty, he will add another 20mg and let it drip down over time into the brain.

The next step (we have not determined when) will be to add methotrexate. Herceptin has been shown to be more effective when used in concert with a chemotherapy drug and methotrexate has been shown to be safe for intrathecal treatment (directly into the brain, either through the Ommaya Reservoir or a lumbar puncture).

You may have noted my use of the word "we". More than at any stage of treatment, this process has been incredibly consultative. My oncologist (and the one who replaced him when he was away) has discussed every option with us (Tim and me) and encouraged us to do our own research and bring it in. Since there is just not that much out there, we are trying to find what we can.

We've also discussed safety, liability (for everyone) and quality of life. At this point, I am not willing to go in more than once a week (or to feel sick all the time) nor am I willing to do things that are only in the initial phases of safety or as Dr. G put it "could fry your brain." These desires dovetail nicely with the hospital's and and my doctors', so we are not in a battle about resources.

Hopefully, more things will be available, once we have tried these next steps. When I am sad about how much life has changed for me, I remember that these last few months have been a sort of gift. As my oncologist says, I am "not supposed to be here."

I'm mostly comfortable sitting in this place. I live in this body, so I am not surprised by this news. I want to stick around as long as I can but I also want this time to be happy. It's a delicate balance.




23 comments:

Chris said...

Your courage and candour amaze me always. Strength, Laurie.

Lene Andersen said...

You have a wonderful presence for someone who is not supposed to be here. And I'm very glad you are.

Sending love.

bibliogrrl said...

Thank you so much for posting. I think about you and your family often. So much love for all of you. <3

Catherine said...

A delicate balance indeed. I'm thinking of you, and hoping it slows and better things come.

Anuj said...

I so enjoy checking in on your Blog and rediscovering your gift of writing!

Sam said...

Thanks for sharing..

Shahzaib Khan said...

It is very sad to know you got Cancer but don't lose hope keep fighting and you will have a normal life again.

karen dish said...

WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
my 28 years old daughter have been a patient of breast cancer . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my daughter symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from cancer,quickly i contacted him and he prepared a herbal medication for my daughter which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible.the redness and nipple discharge gradually stooped ,on thing now she is so full of life. I would recommend this to all my friends,families,around the globe suffering from cancer.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

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SOPHIE LEWIS said...

I am Sophie from Canada, I once suffered from a terrible and Chronic breast cancer ,since 30years now , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs shelley on how his husband was been cured from colon cancer through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help

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Unknown said...

WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are David
Clara I’m a citizen of USA, My younger sister was sicking of
breast cancer and her name is David Sandra I and my family have taking her
to all kind of hospital in USA still yet no good result. I decided to go to
the internet and search for cancer cure so that was how I find a lady
called peter Lizzy she was testifies to the world about the goodness of a
herbal man who has the root and half to cure all kind of disease and the
herbal man email was there. So I decided to contact the herbal man for my
younger sister help to cure her breast cancer. I contacted him and told him
my problem he told me that I should not worry that my sister cancer will be
cure, he told me that there is a medicine that he is going to give me that
I will cook it and give it to my sister to drink for one week, so I ask how
can I receive the cure that I am in USA, he told me

That I will pay for the delivery service. The courier service can
transport it to me so he told me the amount I will pay, so my dad paid for
the delivery fee. two days later I receive the cure from the courier
service so I used it as the herbal man instructed me to, before the week
complete my sister cancer was healed and it was like a dream to me not
knowing that it was physical I and my family were very happy about the
miracle of Doctor so my dad wanted to pay him 5 million us dollars the
herbal man did not accept the offer from my dad, but I don't know why he
didn't accept the offer, he only say that I should tell the world about him
and his miracle he perform so am now here to tell the world about him if
you or your relative is having any kind of disease that you can't get from
the hospital please contact dr.sakuraspellalter@gmail.com/ drsakuraspellalter.wordpress.com or whatsapp him
+2348110114739 for the cure, he will help you out with the
problem. And if you need more information about the doctor you can mail me
davidclara223@gmail.com