Chemo today went better than expected-no reactions and I was able to stay awake for the whole time! Took a little nap when I got home but feel'n good. Thanks to everyone for all your words of encouragement and thanks to Emily, Lindsey and Sabrina for stopping by. And of course thanks to the wonderful staff and nurses at the UI Cancer Center. The pharmacists said to expect some flu like symptoms and maybe some nausea, so altogether- not too bad.
Praying this is THE ONE.
On another note, I've already started my list for Santa this year- I'll settle for stable disease, but a big box of NED would be greatly appreciated.
Thursday, October 13, 2011
Tuesday, October 11, 2011
New game plan
So doctor's appointment was what we expected and not what we feared most. Lungs, Liver and brain were clear and mild progression in the bones- vertebra T9 and more of the pelvis. So now there are 5 spots in the bones. Hard to say how big they are because imagine techniques only indicate bone/cancer activity.
New systemic treatment will include Gemzar and Carboplatin and I will restart Herceptin. TDM1 compassionate use trials just closed, so I won't be able to get that until fall of 2012. Nice thing with the new drugs is they have few side effects, some fatigue and nausea but no hair loss! Plus I can say good bye to the hand and foot syndrome and the lactose intolerance. So hopefully the pounds don't just pile back on after I'd lost some weight (the only perk of my tykerb). No pre-meds, so no prednisone or benadryl on treatment days, so I don't think I'll need to sleep the whole weekend after treatments either.
New systemic treatment will include Gemzar and Carboplatin and I will restart Herceptin. TDM1 compassionate use trials just closed, so I won't be able to get that until fall of 2012. Nice thing with the new drugs is they have few side effects, some fatigue and nausea but no hair loss! Plus I can say good bye to the hand and foot syndrome and the lactose intolerance. So hopefully the pounds don't just pile back on after I'd lost some weight (the only perk of my tykerb). No pre-meds, so no prednisone or benadryl on treatment days, so I don't think I'll need to sleep the whole weekend after treatments either.
For those of you interested, I've included a hair update (see picture).
Saturday, October 8, 2011
Slight set back
First off let me say that I feel GREAT! I am doing everything I did before cancer (minus working... hee hee hee). No pain, very few side effects and the house is getting siding and drywall!
However... my tumor markers are back to the levels they were when I first heard I had bone mets. They had been climbing for about 3 months and doctor decided it was time to see what was going on. So yesterday I had a PET scan, of course cried during the whole thing. Asked the doctor to not let me know anything until we could meet in person on Tuesday.
He did say that the next therapy would be TDM1, here is a video on the new experimental drug.
http://abclocal.go.com/wls/video?id=...dicate§ion
However... my tumor markers are back to the levels they were when I first heard I had bone mets. They had been climbing for about 3 months and doctor decided it was time to see what was going on. So yesterday I had a PET scan, of course cried during the whole thing. Asked the doctor to not let me know anything until we could meet in person on Tuesday.
He did say that the next therapy would be TDM1, here is a video on the new experimental drug.
http://abclocal.go.com/wls/video?id=...dicate§ion
Saturday, October 1, 2011
Especially for you walk is tomorrow!
Treatment is going fine and nothing new to report there. I have a doctor's appointment on Wednesday this week so I'm alittle anxious about that. I hope my cancer markers are down (keep your fingers crossed).
For all you researchers out there, I'm planning to ask my oncologist about adding Chloroquine to my chemo regimen. Its normally used in the prevention of malaria, but recent data suggests that when added to anti-Her-2 therapies it can also prevent autophagy. Autophagy is the process by which cells (ie. cancer cells) degrade/eat unnecessary cellular components (organelles, etc) to obtain energy when energy is scarce. So the thought is that cancer cells can use autophagy to survive (hibernate) during chemo treatments, then when conditions are good again and chemo is done, the cancer cells can resume growing normally. I've only read about combining chloroquine with herceptin, so I'll have to ask if he thinks it might work with tykerb.
On an exciting note, the Especially for You Walk is tomorrow in Cedar Rapids. I am eager to see alot of new and old friends and hopefully meet some survivors at stage IV. Walk starts at 8, and we will have heart-shaped balloons tied to our stroller if you want to walk with us. Hope to see you there.
Kristin
For all you researchers out there, I'm planning to ask my oncologist about adding Chloroquine to my chemo regimen. Its normally used in the prevention of malaria, but recent data suggests that when added to anti-Her-2 therapies it can also prevent autophagy. Autophagy is the process by which cells (ie. cancer cells) degrade/eat unnecessary cellular components (organelles, etc) to obtain energy when energy is scarce. So the thought is that cancer cells can use autophagy to survive (hibernate) during chemo treatments, then when conditions are good again and chemo is done, the cancer cells can resume growing normally. I've only read about combining chloroquine with herceptin, so I'll have to ask if he thinks it might work with tykerb.
On an exciting note, the Especially for You Walk is tomorrow in Cedar Rapids. I am eager to see alot of new and old friends and hopefully meet some survivors at stage IV. Walk starts at 8, and we will have heart-shaped balloons tied to our stroller if you want to walk with us. Hope to see you there.
Kristin
Monday, September 12, 2011
Ca27.29 climbing, but is that significant?
Doctor's appointment went fine last Wednesday, he said that my immediate blood tests were good, all back within the normal range. But then today I got back my Ca27.29 results and the numbers once again are climbing. They went from being 99 in May, to 76, 45, then up to 54 and the latest was 68. 68 is still relatively low, I've heard of people with active disease having numbers in the 1000s. Doc said that he'd be more concerned if it was at least doubling over several months- so I shouldn't worry. Well that's easy for you to say.
I hate the fact that I've taken such good care of my body and it has betrayed me. I really really really get annoyed with how society thinks (and I did too) that if you exercise & eat right you won't get cancer. People mistake "healthy" with being physically fit- which is not at all the same thing. Being physically fit does NOT prevent you from getting the flu, or a cold or EVEN CANCER! Besides physical fitness is superficial, and who is to say that they know what is going on inside their bodies by looking at the exterior. I know quite a few women that are very physically fit and they still got cancer. All the craze with exercising, eating vegan or organic foods is lulling society into a false sense of security. It makes you believe that if you do these things you can control your body. WRONG. Just look at the little children who get leukemia or diabetes- is it because they didn't exercise or because their parents didn't serve them organic foods? It is not.
Just like we have no control over which genes are turned on or off in every cell in our body- we can't prevent bad things from happening to seemingly "healthy" people. The bottom line is we are all dying from some chronic disease, just most of us don't know it yet. And there are the occasional individuals that live into their 90s- why, you ask. They are just freaking lucky.
I hate the fact that I've taken such good care of my body and it has betrayed me. I really really really get annoyed with how society thinks (and I did too) that if you exercise & eat right you won't get cancer. People mistake "healthy" with being physically fit- which is not at all the same thing. Being physically fit does NOT prevent you from getting the flu, or a cold or EVEN CANCER! Besides physical fitness is superficial, and who is to say that they know what is going on inside their bodies by looking at the exterior. I know quite a few women that are very physically fit and they still got cancer. All the craze with exercising, eating vegan or organic foods is lulling society into a false sense of security. It makes you believe that if you do these things you can control your body. WRONG. Just look at the little children who get leukemia or diabetes- is it because they didn't exercise or because their parents didn't serve them organic foods? It is not.
Just like we have no control over which genes are turned on or off in every cell in our body- we can't prevent bad things from happening to seemingly "healthy" people. The bottom line is we are all dying from some chronic disease, just most of us don't know it yet. And there are the occasional individuals that live into their 90s- why, you ask. They are just freaking lucky.
Tuesday, September 6, 2011
House pictures
Doctor appointment tomorrow, will get blood work and hopefully can schedule a stress test for my heart. I've been concerned about chest pains lately, which sort of radiate throughout my shoulders when I exercise. Its pretty intense, I get short of breath and feel faint. Its probably because I'm so out of shape, but heart disease does run in the family and with all the chemo drugs I've been on I just want the reassurance that I don't have a heart condition. Then once I have that confidence, I'll be back to pushing myself and feel okay when I feel "the burn".
Finally have pictures of the house going up. These are from day 2 and day 3. Super excited. Also wanted to pass along that I, and a bunch of people from my mom's group will be walking the 1 mile Especially for You walk at Mercy Hospital on October 2nd.
And lastly for all you immunology researchers out there- I just met (online) a gal who is going to join a clinical trial for metastatic breast cancer, where they will prime her own Dendritic cells against the Her-2 protein and then reinfuse them into her. I was super excited to see that some of the work we do at the lab bench does translate back to patients- and I feel so proud to have been a part of that. The trial is out East, so I won't be joining the study, but I can't wait to hear the results. Oh and one more fun fact- if your looking for the next grant/fellowship to write, consider metastatic breast cancer. The vast majority of breast cancer research is directed at the initial treatment and/or the etiology of the disease. Very little actually focuses on the metastatic disease which accounts for all breast cancer deaths. So its a under-researched area, FYI.
Monday, August 29, 2011
House updates
We've broken ground! Our address will be 200 Colton Drive, North Liberty. Contract says we should be in by Dec 16th- what a great early Christmas present.
Other than that, I am feeling good. I had a big scare when I noticed new pains around my incision sites and in my ribs on that side. Went to the Radiation Oncologist and she said that it didn't feel like a new recurrence. A new recurrence should hurt with deep breaths and these do not. So with that vote of confidence I've gotten hopeful once again for a normal life. Every good day, I get hopeful for "a cure", and then I get all excited about the prospect of another baby. I then have to remind myself just to be thankful, and not push it. This cycle repeats itself every few days.
And in reality I could stop my treatments when ever I wanted and try to conceive. But the issue would be that if my cancer started growing again or spread to more sites, I would not be able to receive chemo while pregnant. In addition, whole body imaging to monitor for cancer growth is dangerous to the unborn baby- it is a large dose of radiation. While I was in the hospital for my cellulitis infection- the nurse told me of a patient whose cancer recurred while pregnant, she refused chemo- as it would kill the baby. And although she was able to bring the baby to term, her brain was so full of metastases by that time that she died within a few weeks of her C-section. Obviously, I would hate to abort a child but not being there for Parker and Patrick would be worse. So I think I will avoid ever having to make that decision.
But at least we have options, perhaps we could adopt or use a surrogate. Of course all this depends on whether I can get to "no evidence of disease" (NED) stage, or in my doctor's words, a homerun. So one thing at a time and one day at a time. But in the meantime, I still plan to dream of a totally normal life.
Also just celebrated (if you can say that) my 1 year caniversary of the original diagnosis. What a hellish year- grandma dies, mother dies, dx cancer, cancer recurs before treatment even ends. I like to think that no year could ever be worse that this one, so I must have some good years ahead. :)
Other than that, I am feeling good. I had a big scare when I noticed new pains around my incision sites and in my ribs on that side. Went to the Radiation Oncologist and she said that it didn't feel like a new recurrence. A new recurrence should hurt with deep breaths and these do not. So with that vote of confidence I've gotten hopeful once again for a normal life. Every good day, I get hopeful for "a cure", and then I get all excited about the prospect of another baby. I then have to remind myself just to be thankful, and not push it. This cycle repeats itself every few days.
And in reality I could stop my treatments when ever I wanted and try to conceive. But the issue would be that if my cancer started growing again or spread to more sites, I would not be able to receive chemo while pregnant. In addition, whole body imaging to monitor for cancer growth is dangerous to the unborn baby- it is a large dose of radiation. While I was in the hospital for my cellulitis infection- the nurse told me of a patient whose cancer recurred while pregnant, she refused chemo- as it would kill the baby. And although she was able to bring the baby to term, her brain was so full of metastases by that time that she died within a few weeks of her C-section. Obviously, I would hate to abort a child but not being there for Parker and Patrick would be worse. So I think I will avoid ever having to make that decision.
But at least we have options, perhaps we could adopt or use a surrogate. Of course all this depends on whether I can get to "no evidence of disease" (NED) stage, or in my doctor's words, a homerun. So one thing at a time and one day at a time. But in the meantime, I still plan to dream of a totally normal life.
Also just celebrated (if you can say that) my 1 year caniversary of the original diagnosis. What a hellish year- grandma dies, mother dies, dx cancer, cancer recurs before treatment even ends. I like to think that no year could ever be worse that this one, so I must have some good years ahead. :)
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