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.




9 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!

Jessical Alba said...

ALL THANKS TO DR WILLIAMS WITH HIS HERBAL PORTION I WAS COMPLETELY CURED FROM CANCER.
I'm here again to appreciate. DR WILLIAMS God will always continue to bless you more abundantly, for the good works you don in my life, I will always keep on writing good and posting my testimonies about you on the Internet, I’m Jessica from Orlando, Florida. I was tested CANCER SIMPLEX VIRUS positive, I saw a blog on how DR WILLIAMS cured people with his herbal portion, i did not believe in natural medicine but i just decided to give him a try, I contacted him,and explain my situation to him,few day later he sent me the herb, after taking doc Williams herbal medicine for few week i also got my healing with his herbal portion, i am so happy. If you have any type of cancer problem or you are also infected with any kind of disease, contact him Drwilliams098765@gmail.com for advice and for his product,i hope this testimony also help some one out there

JOHNSON KATE said...

As a sign of gratitude for how my wife was saved from CANCER, i decided to reach out to those still suffering from this.
My wife suffered cancer in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, she always complain of abnormal vaginal bleeding, and she always have pain during sexual intercourse. . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cancer . I never imagined cancer. has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time he was fully okay even up till this moment he is so full of life. cancer. has a cure and it is a herbal cure contact the doctor for more info on drwilliams098765@gmail.com on how to get the medication. Thanks for reading my story

CancerconsultIndia said...

Thanks for this post, its really nice.

Bone Cancer doctor In noida

Bone Cancer Consultant In noida

Sam said...

Thanks for sharing..