I subscribe to several metastatic breast cancer groups on Facebook, and it seems like almost every day I see a post, similar to this one, regarding another sister who has passed or is in the last days of her life. I often search for the person on Facebook in an effort to remember this person as an individual and to try to piece together their story. No matter how many times I do this search, I'm always amazed at what I find.
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- aymztx
- Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -
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Saturday, July 26, 2014
Where does it end?
Labels:
acs,
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funding,
mbcalliance,
mbcn,
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Wednesday, July 23, 2014
Chemo Help Anyone?
In a few weeks I'll be starting a weekly chemo treatment. I'll need to go in every week for three weeks, then have one week off, then repeat this cycle. This will be in addition to the doctor's visits, scans, etc that will be required for the trial. Jesse will be able to take me on the days he has off (he's off every other Thursday), but has to work 7am-7pm on the ones in between. I've already talked to them about the day and it will most likely be on Thursday afternoons. I'm not sure how bad this will effect me and am not real crazy about having to go by myself and having to drive myself home. I guess I can manage if I have to, but I really don't want to go by myself. It's seriously lonely and depressing!
Tuesday, July 22, 2014
Advocacy Video for Meds
Here's a cute advocacy video encouraging people to read up on their meds and make sure they are not taking too much of something or something they don't need altogether.
Friday, July 18, 2014
Thursday, July 17, 2014
Doing my research
I've been doing my research as usual and found a nice college level video by a person who worked at Genentech for many years before she came back to teach and experiment. This video is from 2007 and just gives the basics, but it goes into why blocking the inflammatory response can block cancer growth and metastasis. If you can get through the parts that seem a little high level and hang in there, she tends to go back and sort of summarize after she gets past all the charts and details and it seemed to catch me up if I got lost or thought I wasn't following well. I guess I'll be researching what process Anakinra uses to suppress inflammation this weekend for sure.
So Far So Good
I actually got the call I was expecting from Baylor Research today. I am going to meet them tomorrow to sign off on the consent forms. After that, they'll need to collect a blood specimen as a baseline, they will order the medicine (which they said takes about a week to get in), and they'll train us on how to do the daily shots. Then I begin taking the Anakinra for two weeks, then start doing a weekly chemo on top of it.
I'm trying not to get my hopes up because the last two trials I tried to get into failed, but so far so good!
I'm trying not to get my hopes up because the last two trials I tried to get into failed, but so far so good!
Wednesday, July 16, 2014
Today's Answers
I went in to talk to the oncologist today and she gave us the details on the next method of attack. She is suggesting a standard of care chemotherapy drug, Abraxane (nab paclitaxel) plus Anakinra. Anakinra is a drug that is currently FDA approved for reducing the pain and swelling associated with rheumatoid arthritis. It is an interleukin-1 antagonist. The theory is that IL-1 presence in the body contributes to tumor growth and metastasis. Blocking IL-1 by using an antagonist would have the opposite effect.
Anyhow, I'm waiting to get disqualified... I mean I'm attempting to qualify for this trial. If not, I'll just be doing the Abraxane. I need to get the chemo on board to knock some of this growth back soon.
Click here to see the study sheet.
Anyhow, I'm waiting to get disqualified... I mean I'm attempting to qualify for this trial. If not, I'll just be doing the Abraxane. I need to get the chemo on board to knock some of this growth back soon.
Click here to see the study sheet.
Monday, July 14, 2014
Update and Upcoming Stuff
Today I'm back to work, so no pain meds. We've had a lot of calls this morning because of people being out and my throat is getting sore from talking. According to what I've read and been told, the radiation is still in effect in my body for 2 weeks after the final treatment (Friday) and it takes 4-6 weeks for the damage to heal completely. So I'm probably looking at a few more weeks of this.
Thursday, July 10, 2014
Third Time's A Charm, Right?
Today I completed another session of radiation. This makes my third time to do 10 days in the past 5 years. Third time's a charm, right? I hope it is, because I'm seriously beginning to wonder if I'm approaching the lifetime maximum radiation exposure. Considering all the CT Scans I've had in the past few months + this radiation session and the two other ones I had previously, I would not be surprised.
I was discharged again with a certificate and a t-shirt. But when you become a radiation vet, they know you already have the t-shirt, so they offered to give me another t-shirt for a family member or friend. Jesse was the lucky recipient of my radiation t-shirt. Congratulations, Jesse!
I'm seriously glad I'm done with the treatments. The nurse said it will continue to be active for the next two weeks. This means I won't be eating anything easily until my body kicks in and gets the cells repaired in my throat. Today I was so hungry, that I bought a hamburger and picked the patty apart into tiny pieces. It takes forever to eat it that way, but it definitely made me feel better!
I was discharged again with a certificate and a t-shirt. But when you become a radiation vet, they know you already have the t-shirt, so they offered to give me another t-shirt for a family member or friend. Jesse was the lucky recipient of my radiation t-shirt. Congratulations, Jesse!
I'm seriously glad I'm done with the treatments. The nurse said it will continue to be active for the next two weeks. This means I won't be eating anything easily until my body kicks in and gets the cells repaired in my throat. Today I was so hungry, that I bought a hamburger and picked the patty apart into tiny pieces. It takes forever to eat it that way, but it definitely made me feel better!
Labels:
Radiation
Tuesday, July 8, 2014
Quick Update
Today has been rather hectic between working and doctor's visits, radiation, and cancer group tonight, so I'm going to keep it brief tonight because I haven't had time to do any research to really say much more anyhow.
I went in to see my local oncologist expecting to find out about, and sign off on the forms, for the Paloma-3 trial, but when I got there they had me scheduled with a PA I had never met before and he had no idea why I was even there. After I gave yet another doctor a summary of why I was there and what I was expecting, he excused himself and went and called my oncologist on the phone. He came back with a rather vague idea of what was going on and really couldn't answer any of my questions.
What it comes down to, is that I failed to qualify for the Paloma 3 trial because it is ineffective on the type of tumors I have. That's about all I got out of him regarding that. I plan to ask more questions next week when I see the oncologist.
I informed him I have been off treatment since the beginning of June and requested to know what was being recommended as the next course of treatment. I was told Abraxane. Abraxane is an IV chemo drug. It is similar to Taxol which I had at the very beginning of all of this in 2009. It was the first one I did for 12 weeks once a week and tolerated fairly well. If you'd like a refresher on how that went, here's a link to a search that will show all the articles mentioning taxol: Click here for links to previous Taxol related blog posts.
This time, I'd be doing it once a week for 3 weeks and taking 1 week off and repeating as long as it appeared to be effective. It's a 2 hour process. I'm seriously dreading it and really want to find out what made her choose this treatment over others like Afinitor which is an m-tor inhibitor that MD Anderson had suggested. I'll know more next week when I get to talk to her.
Until then, I'll be reading up on it and looking to see what all options I have. Here's the rough schedule they gave me today:
7/10 - Last day of radiation(8 down, 2 to go!)
7/11 or 7/14 - CT Scan
7/16 - Oncologist visit
I went in to see my local oncologist expecting to find out about, and sign off on the forms, for the Paloma-3 trial, but when I got there they had me scheduled with a PA I had never met before and he had no idea why I was even there. After I gave yet another doctor a summary of why I was there and what I was expecting, he excused himself and went and called my oncologist on the phone. He came back with a rather vague idea of what was going on and really couldn't answer any of my questions.
What it comes down to, is that I failed to qualify for the Paloma 3 trial because it is ineffective on the type of tumors I have. That's about all I got out of him regarding that. I plan to ask more questions next week when I see the oncologist.
I informed him I have been off treatment since the beginning of June and requested to know what was being recommended as the next course of treatment. I was told Abraxane. Abraxane is an IV chemo drug. It is similar to Taxol which I had at the very beginning of all of this in 2009. It was the first one I did for 12 weeks once a week and tolerated fairly well. If you'd like a refresher on how that went, here's a link to a search that will show all the articles mentioning taxol: Click here for links to previous Taxol related blog posts.
This time, I'd be doing it once a week for 3 weeks and taking 1 week off and repeating as long as it appeared to be effective. It's a 2 hour process. I'm seriously dreading it and really want to find out what made her choose this treatment over others like Afinitor which is an m-tor inhibitor that MD Anderson had suggested. I'll know more next week when I get to talk to her.
Until then, I'll be reading up on it and looking to see what all options I have. Here's the rough schedule they gave me today:
7/10 - Last day of radiation(8 down, 2 to go!)
7/11 or 7/14 - CT Scan
7/16 - Oncologist visit
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