Still trying to figure out the rash issue. I don't even remember putting the last entry in. Talking to my mom today, she referenced it.
Because my face/eyes were swollen, they are concerned and carefully following this. It is exhausting, but today I had a bit of a break from the frantic painful itching.
The plan is to slowly come down off the ER drugs, and if I swell up again...off I go off the Tykerb.
This is small chance it isn't Tykerb. But a reaction to some other drug that has taken some time to express itself.
It is a very tiring, painful waiting game. Honestly friends, my nerves are shot. I am exhausted. And edging on getting every single drug out of my system. When I went to list them to the dermatologist, I handwrote a page of drugs, and told her of others I have taken this month, but aren't currently being taken.
TOO MANY DRUGS
That is what my body is saying.
Prayers. I want to stay on the Tykerb. Honestly, it is very very demanding on the mental side to deal with this constant back and forth, up and down, pain, almost no pain. Numbers up, numbers down. To be so close to seeing freedom for awhile, to have the possibility of it taken away....
I just can't right now.
So, no bright and sunny today. Worn out, mentally and physically.
Jenna
Thursday, January 21, 2010
Monday, January 18, 2010
Amazing Week
So, my skin is peeling. Like a snake shedding it's skin I as I see it. From the radiation burn. But I can bend again, and move so much more freely.
I have a horrid rash. Had me layed up for the week (including radiation burn) and in desperate pain that took me to the ER Sunday night. Got some good meds and answers Monday from the doc. It is the "Tykerb rash" but not a hideous looking one, just painful. So we are looking for ways to manage it.
Then she told me about a patient, whose mets had progressed farther than mine did, and was doing well now for two years on Tykerb ALONE. Now she won't say that if things were looking promising to go in that direction. To be in an amazing remission pattern, and NOT go in for chemo weekly. Just take my four pills, at home, daily, and deal with the rash. WOAH. Wooooooooooooah. Thank you Universe, Great Spirit, and angels on earth.
What a birthday present!!!!!!!!!!!!!!!!!!!! 35 today! Whohooooooooo!
Painful rash under control and calming down. Chemo today with Pushpa, whom I love and am so grateful for. Yesterday, was the celebration day. A kirtan with Shantala, and a brunch with friends that I deeply respect and honor. What a good time.
Love to you all
Jenna
Tuesday, January 12, 2010
HOLY TYKERB BATMAN!
So, over a month ago, the doc walked in with my intuition in hand. I had told her I was getting that I should be taking a pill. We went over a few chemo pill options, none of which seemed right. But I kept insistening, she kept looking. And lo and behold, she went to a cancer conference.
A NEW (old) pill, used in a new way that the trials had just been released on. It showed that Herceptin resistant patients were showing amazing improvement when given Tykerb along with Herceptin. Basically. The Herceptin doesn't let it reproduce from the outside, the Tykerb kills it off from the inside. I have links to this research in an early blog entry.
So, we started our own trial on me a month ago...........
We follow CA 27 markers. This checks a protein (?) that only breast cancer cells let off when they are growing and reproducing. These guys stay in the bloodstream. Every 2-3 weeks we do a count check.
A month ago, when this little experiment start, my markers were around 1000.
Yesterday we tested again, about a month later.....
drumroll please...........
198
A "regular" person on the street runs this marker from 0-35. In a week, at this trend, I will be at 0. ZERO.
That my friends, if it holds, is the beginning of REMISSION. How long it holds, we shall see. But the next thing down the pipe, super herceptin, which overcomes Herceptin Resistence and is working WONDERS. It is called DMI, and they are trialing it at Johns Hopkins I believe. Not on the market yet.
heheheheheheheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
POW - a few months ago I was wondering if Iwould be making it through. I let go into faith and followed my intution like a bloodhound. God I love my doc. :)
Jenna
A NEW (old) pill, used in a new way that the trials had just been released on. It showed that Herceptin resistant patients were showing amazing improvement when given Tykerb along with Herceptin. Basically. The Herceptin doesn't let it reproduce from the outside, the Tykerb kills it off from the inside. I have links to this research in an early blog entry.
So, we started our own trial on me a month ago...........
We follow CA 27 markers. This checks a protein (?) that only breast cancer cells let off when they are growing and reproducing. These guys stay in the bloodstream. Every 2-3 weeks we do a count check.
A month ago, when this little experiment start, my markers were around 1000.
Yesterday we tested again, about a month later.....
drumroll please...........
198
A "regular" person on the street runs this marker from 0-35. In a week, at this trend, I will be at 0. ZERO.
That my friends, if it holds, is the beginning of REMISSION. How long it holds, we shall see. But the next thing down the pipe, super herceptin, which overcomes Herceptin Resistence and is working WONDERS. It is called DMI, and they are trialing it at Johns Hopkins I believe. Not on the market yet.
heheheheheheheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
POW - a few months ago I was wondering if Iwould be making it through. I let go into faith and followed my intution like a bloodhound. God I love my doc. :)
Jenna
Friday, January 8, 2010
Breathtaking Video - The Third and the Seventh by Alex Roman
Please watch this to the end. Then read the spoiler at the bottom.
Why is this on a breast cancer blog? Because it is my blog, and I can post it if I want to. hehehehe. No really. Because, Jenna, pre-BC, was an artist. Jenna in the break I had from chemo, started film school. Jenna still loves art, architecture, and film. And this is so inspiring. And somedays, when your skin is burned by radiation, and all you do is want to sleep (not want to, all you DO is sleep), something has to keep you grounded in YOU, so you YOU don't speak abotu yourself in the third person anymore:
Please watch this in full screen mode and watch to the end.
Now, if you didn't catch that......NONE of that was real. It was ALL CG script. I am still in disbelief myself.
Lovely.
Radiation ends today. I can stretch again! After a year, I can stretch my arms above my head again. Totally worth the sunburn/poision ivy patch of skin on my back that is making me nuts. But that shall pass.
Yes, still on chemo. ;)
Jenna
Why is this on a breast cancer blog? Because it is my blog, and I can post it if I want to. hehehehe. No really. Because, Jenna, pre-BC, was an artist. Jenna in the break I had from chemo, started film school. Jenna still loves art, architecture, and film. And this is so inspiring. And somedays, when your skin is burned by radiation, and all you do is want to sleep (not want to, all you DO is sleep), something has to keep you grounded in YOU, so you YOU don't speak abotu yourself in the third person anymore:
Please watch this in full screen mode and watch to the end.
The Third & The Seventh from Alex Roman on Vimeo.
Now, if you didn't catch that......NONE of that was real. It was ALL CG script. I am still in disbelief myself.
Lovely.
Radiation ends today. I can stretch again! After a year, I can stretch my arms above my head again. Totally worth the sunburn/poision ivy patch of skin on my back that is making me nuts. But that shall pass.
Yes, still on chemo. ;)
Jenna
Thursday, December 31, 2009
End of the Year Gratitude
Okay, Day 1 for me, 42 for the rest of you doing this 42 days of Gratitude thing. :)
I am grateful for learning to open myself and be vunerable.
I am grateful for learning to be a recipient of aid, help, and healing energy.
I am grateful I am receptive to love and healing that others give.
I am grateful for learning to trust the universe is indeed my coconspirator of my highest good.
I am grateful for the healing that has happened within my family this year.
I am grateful for the healing that has happened within my body this year.
I am grateful for all the healers who have done this with energy, with medicine, with muscle power, with love.
I am grateful for the mountains that bank me, and the choir which peeled back a layer that obscured my inner vision, and opened me up to a whole new world.
I am grateful for tears, and for long distance phonecalls.
I am grateful we all have a chance here to Love.
http://www.worldgratitude.com/
Jenna
I am grateful for learning to open myself and be vunerable.
I am grateful for learning to be a recipient of aid, help, and healing energy.
I am grateful I am receptive to love and healing that others give.
I am grateful for learning to trust the universe is indeed my coconspirator of my highest good.
I am grateful for the healing that has happened within my family this year.
I am grateful for the healing that has happened within my body this year.
I am grateful for all the healers who have done this with energy, with medicine, with muscle power, with love.
I am grateful for the mountains that bank me, and the choir which peeled back a layer that obscured my inner vision, and opened me up to a whole new world.
I am grateful for tears, and for long distance phonecalls.
I am grateful we all have a chance here to Love.
http://www.worldgratitude.com/
Jenna
Tuesday, December 15, 2009
Quick Post - Herceptin Resistence and it's CURE?
What is Herceptin Resistence? Herceptin is NOT a chemo drug. It doesn't kill all cells. Just breast cancer cells that have a certain receptor that helps it to reproduce. Herceptin goes in and takes the place where the protein should go to let the cell reproduce. Thus, shutting down the cycle. Like birth control for breast cancer cells with this as a positive attribute.
Now, this drug has been called the homerun drug of all chemo drugs by my oncologist. At the beginning of this journey. anyone in the oncology world I told I could take herceptin all were SOOO excited. The phramacist joked that it was so amazing it should be put in the water. HOWEVER, for 20% of the patients, it doesn't work. It is called Herceptin Resistence. For me, it seems to work better with chemo being taken with it. But on it's own, it wasn't holding it in check.
This has had me bummed, depressed, scared.....a life on constant chemo. I won't go there. Because...
I am part of a board of Metastatic Cancer Babes on Crazy Sexy Cancer. The discussion there informed me of a new drug in trials that helps overcome Herceptin resistence. Which lead me to a discussion with my doc several times. Which lead her to looking into it more. Which lead her to a conference. Which lead her being as excited as I am because she has the science behind it. Apparently, there is great hope and success with mixing an older drug which is similar with Hercptin and this overcoming the resistence.
Which lead her to GIVING ME THE DRUG!!!!!!! I am a road tester. Paving the way for this new drug combo that could save lives. SOOOOOOOOOOOOOOOOOOO EXCITED. I start TODAY. PRAYERS THIS WORKS. It could take me from 1-2 years to ????? !!!!!!!!!!!!!!!!!!! Prayers prayers prayers.
I NEEDED THIS. Hope, something to look towards. Somethign to be a part of that will help other women, even if it doesn't help me. If my dot on a graph somewhere helps scienctist understand it better which leads to a cure.....I AM IN.
Jenna
Now, this drug has been called the homerun drug of all chemo drugs by my oncologist. At the beginning of this journey. anyone in the oncology world I told I could take herceptin all were SOOO excited. The phramacist joked that it was so amazing it should be put in the water. HOWEVER, for 20% of the patients, it doesn't work. It is called Herceptin Resistence. For me, it seems to work better with chemo being taken with it. But on it's own, it wasn't holding it in check.
This has had me bummed, depressed, scared.....a life on constant chemo. I won't go there. Because...
I am part of a board of Metastatic Cancer Babes on Crazy Sexy Cancer. The discussion there informed me of a new drug in trials that helps overcome Herceptin resistence. Which lead me to a discussion with my doc several times. Which lead her to looking into it more. Which lead her to a conference. Which lead her being as excited as I am because she has the science behind it. Apparently, there is great hope and success with mixing an older drug which is similar with Hercptin and this overcoming the resistence.
Which lead her to GIVING ME THE DRUG!!!!!!! I am a road tester. Paving the way for this new drug combo that could save lives. SOOOOOOOOOOOOOOOOOOO EXCITED. I start TODAY. PRAYERS THIS WORKS. It could take me from 1-2 years to ????? !!!!!!!!!!!!!!!!!!! Prayers prayers prayers.
I NEEDED THIS. Hope, something to look towards. Somethign to be a part of that will help other women, even if it doesn't help me. If my dot on a graph somewhere helps scienctist understand it better which leads to a cure.....I AM IN.
Jenna
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