CT scan results from last week are in. We met with Dr. A yesterday and went over a lot of information. First off, mom's cancer is stable..for now. The chemo cocktail of irinotecan and docetaxol is doing a good job at holding the cancer at bay. The scan also showed that the blood clot in her chest has vanished. Thank you lovenox! We're still going to continue with the lovenox on a reduced dosage however, since this chemo has a tendency to cause blood clots along with the aranesp shot she's been on.
So what now? We decided to go ahead with one more round of chemo yesterday to buy time until we figure out the next course of action. We've narrowed down four paths all of which will involve taking a c-met inhibitor drug. So we're buying time with this round of chemo until we can figure out the pros and cons for each drug. Some things that we seriously have to take into consideration are :1) mom's physical state and how it will hold up to the travel commitment for each trial 2) costs 3) my time commitment and current responsibilities and 4) out of state TPN accommodations. These are just factors for us. There's also a lot on the side of the clinic/ pharmaceutical company hosting each trial which can include: evaluation for trial, weekly lab tests, various exams, all the exclusion criteria, patient history etc. So there's a ton going on right now and I'm honing in on my research and working closely with Dr. A to make the right decision that will be good for us.
Thursday, October 25, 2012
Tuesday, October 16, 2012
A Rotten Few Days
The title speaks for itself. This weekend and last few days have just been rotten. Chemo 6 - Session 2 is really really taking a toll on mom. I've had to deal with a multitude of side effects and keeping a very watchful eye. Spiking fevers, very very low energy levels, fluid retention in legs, chest pain, and intense bone pain. For the most part, I've been able to pinpoint where each side effect is from and managing that with pain meds, hydration, tpn and tips from fellow caregivers. The one thing that concerns me is the chest pain. I am thinking the blood clot is reappearing. She's on the blood thinner which is good and I am thankful that we have a scan later this week to see what's going on in the chest region.
Friday, October 12, 2012
Chemo Round 6 - Session 2
Yesterday mom had her second session of round six of chemo (4th round of the new chemo). Next week is her break week and we will also do a CT scan to see the status of the cancer.
I've been consumed with CMET research. I eat, drink and sleep it. Yes, I even dream about it. I've been reading through the handful of clinical trials and learning the different types of CMET inhibitors (the drugs being created to attack the cmet protein). I showed mom one of the trials to have her read through and she spent a minute looking at it and responded, "This is boring...and complicated. How do you understand this stuff". Her response made me chuckle cause I actually find this stuff very interesting.
I feel like I have a firm grasp on everything I've researched thus far but it concerns me that mom will not be up for travel and expenses might become an issue too. The closest trial to us is in Michigan and it will involve weekly visits to that facility for the first 6 weeks or so. Then after that, you visit once a month. Right now, I have no idea of how I am going to do this. What I do know, is that I will need help. My mom's life is at stake and I must find a way to make this work.
I've been consumed with CMET research. I eat, drink and sleep it. Yes, I even dream about it. I've been reading through the handful of clinical trials and learning the different types of CMET inhibitors (the drugs being created to attack the cmet protein). I showed mom one of the trials to have her read through and she spent a minute looking at it and responded, "This is boring...and complicated. How do you understand this stuff". Her response made me chuckle cause I actually find this stuff very interesting.
I feel like I have a firm grasp on everything I've researched thus far but it concerns me that mom will not be up for travel and expenses might become an issue too. The closest trial to us is in Michigan and it will involve weekly visits to that facility for the first 6 weeks or so. Then after that, you visit once a month. Right now, I have no idea of how I am going to do this. What I do know, is that I will need help. My mom's life is at stake and I must find a way to make this work.
Tuesday, October 9, 2012
A Sliver of Hope
Last Thursday, mom started her sixth round of chemo. She's fighting with everything she has and I am so proud of her. A lot of people are probably wondering why she continued with the chemo even though her prognosis was very bad. Well, there's something I haven't told you. Mom is going to be a grandma! Three months ago, I found out that I was pregnant and told mom the news immediately. I remember the first time seeing her after I told her the news. She was all dressed up with make-up and all for her chemo treatment which was that day. She said to me, "Today I am happy. I am going to be a grandma. I am gonna fight." Since then, it's what that keeps her going. She's told me that she knows she doesn't have much time left but wishes with all her heart that she can see the day her grandchild is born. Since then we've both been doing whatever it takes to make that day happen.
In some other surprising but awesome news, mom was tested positive for the CMET oncogene. We were told that the chances of testing positive for the protein were very low of individuals being screened for it. But, after researching and asking some wonderful people who knew about this, I was finding that a person had a higher likelihood of testing positive if the tumor was of diffuse type and the person was minority/ from a diverse population. Mom fit both criteria and it's what kept me pushing on to get her tested for this protein.
So what does this all mean? Well, since mom is positive, she can enter clinical trials that specifically target the protein in the tumors. Right now, the drugs are only available via clinical trials though and finding the right trial will be a long process from what I've been told. But, we have a direction to move and options at hand.
A few months back when we ventured to Mayo Clinic, mom was tested for HER2, another oncogene. HER2 has already been through clinical trials and the treatment is readily available if patients test positive. Unfortunately, mom was negative back then. It's really fascinating science and I think that years from now, it will do wonders for cancer patients. Instead of using poison (chemo) and hoping that perhaps that specific combination works for your body, you can get approved drugs that specifically target and kill that tumor protein. I know it's probably nerdy to be excited about this, but I am. I feel like this is the key to potentially saving my mom. And even myself, my sister and my future little one..if this disease targets us.
In some other surprising but awesome news, mom was tested positive for the CMET oncogene. We were told that the chances of testing positive for the protein were very low of individuals being screened for it. But, after researching and asking some wonderful people who knew about this, I was finding that a person had a higher likelihood of testing positive if the tumor was of diffuse type and the person was minority/ from a diverse population. Mom fit both criteria and it's what kept me pushing on to get her tested for this protein.
So what does this all mean? Well, since mom is positive, she can enter clinical trials that specifically target the protein in the tumors. Right now, the drugs are only available via clinical trials though and finding the right trial will be a long process from what I've been told. But, we have a direction to move and options at hand.
A few months back when we ventured to Mayo Clinic, mom was tested for HER2, another oncogene. HER2 has already been through clinical trials and the treatment is readily available if patients test positive. Unfortunately, mom was negative back then. It's really fascinating science and I think that years from now, it will do wonders for cancer patients. Instead of using poison (chemo) and hoping that perhaps that specific combination works for your body, you can get approved drugs that specifically target and kill that tumor protein. I know it's probably nerdy to be excited about this, but I am. I feel like this is the key to potentially saving my mom. And even myself, my sister and my future little one..if this disease targets us.
Tuesday, October 2, 2012
Turning Point
The past week mom's had a pretty nasty cold. As you know, getting a cold with a fever while your white blood counts are low can be detrimental to a chemo patient. I've been doing my best to stay on top of it with the help of the doctors. Mom had an ongoing low-grade fever for several days last week and into the weekend. We were able to break it a few times but it kept coming back. Luckily it was not higher than 100.5 (the magic number the clinic tells you if you have to be rushed to the ER if it goes higher).
The cold-like symptoms are finally subsiding thankfully. But, I am still very concerned about mom's spirits right now. She's very depressed, weak and lethargic. I can tell she's just frustrated at not being able to do anything and she's just thinks deep down she doesn't have much time left. She's told me she feels like the cancer is just eating away at her body and all the treatment is not doing anything so why bother. She often asks me the hardest questions: "Why is this happening to me; I am a good person?", "How much time do I have left", "What have I done in life to suffer like this?" etc. I just let her speak her mind. There are no answers that I can really give her. I am not going to lie and tell her things will be ok. It's not me. I just hope as we start the sixth round of chemo this week, that she still has a bit of fight in her.
Deep down I am planning how I am going to do this if she slips further and further. My mind is always multi-tasking these days it seems. Up to this point, I've only done research on hospices but I am thinking that within the next few weeks, I need to actually make an appointment and visit these facilities. I can't keep avoiding what I am afraid of. From a few people I've talked to, they are not as scary as you think and are quite welcoming. Mom and I both know that I am exhausted and she said that I will need help here pretty soon. So that's where we're at.
The cold-like symptoms are finally subsiding thankfully. But, I am still very concerned about mom's spirits right now. She's very depressed, weak and lethargic. I can tell she's just frustrated at not being able to do anything and she's just thinks deep down she doesn't have much time left. She's told me she feels like the cancer is just eating away at her body and all the treatment is not doing anything so why bother. She often asks me the hardest questions: "Why is this happening to me; I am a good person?", "How much time do I have left", "What have I done in life to suffer like this?" etc. I just let her speak her mind. There are no answers that I can really give her. I am not going to lie and tell her things will be ok. It's not me. I just hope as we start the sixth round of chemo this week, that she still has a bit of fight in her.
Deep down I am planning how I am going to do this if she slips further and further. My mind is always multi-tasking these days it seems. Up to this point, I've only done research on hospices but I am thinking that within the next few weeks, I need to actually make an appointment and visit these facilities. I can't keep avoiding what I am afraid of. From a few people I've talked to, they are not as scary as you think and are quite welcoming. Mom and I both know that I am exhausted and she said that I will need help here pretty soon. So that's where we're at.
Tuesday, September 25, 2012
Chemo Round 5 - Session 2
Mom had her second session of chemo round 5 last week Wednesday. I wish I can say the last week was easy but it wasn't. She's been in really rough shape. I haven't seen her this bad for quite some time. She's so fatigued to the point anytime she stands up, she feels like she's going to collapse and pass out. She's also not been able to eat for the past few days and she said that she's been feeling stomach pains again. She hadn't felt that for awhile now. I can see that she's just tired of all this and is really questioning to keep on fighting the good fight. I keep telling her that we'll take one day at a time and I will go along with anything she decides. She's been talking about hospices again and as hard as it is for me to accept that facet of this, I have to do what's right by her. We're meeting the palliative specialist later this week to talk about it.
The past few weeks I've also been consumed with research and clinical trials. I managed to convince Dr. A to send out mom's tumor tissue to get tested for a specific protein that I've been reading about. I came to know about it through some amazing people I've been who are also fighting the good fight. They are my cancer warriors and fellow caregivers.
The test examines mom's tumors for a specific protein. If she's tested positive for this specific protein, she can enter clinical trials with drugs that target and kill that protein in the tumor.But, she has to be positive for the specific protein makeup aka bio-marker. Chances of her being positive are extremely low from what I've been told. But, I am hoping...I am always hoping. I am not willing to throw in the towel quite yet. I need to know that when this is all said and done, that I can look in the mirror and tell myself that I've done everything possible that I could have done.
The past few weeks I've also been consumed with research and clinical trials. I managed to convince Dr. A to send out mom's tumor tissue to get tested for a specific protein that I've been reading about. I came to know about it through some amazing people I've been who are also fighting the good fight. They are my cancer warriors and fellow caregivers.
The test examines mom's tumors for a specific protein. If she's tested positive for this specific protein, she can enter clinical trials with drugs that target and kill that protein in the tumor.But, she has to be positive for the specific protein makeup aka bio-marker. Chances of her being positive are extremely low from what I've been told. But, I am hoping...I am always hoping. I am not willing to throw in the towel quite yet. I need to know that when this is all said and done, that I can look in the mirror and tell myself that I've done everything possible that I could have done.
Monday, September 17, 2012
Chemo Round 5 - Session 1
It's been quite an interesting week and I'm a little behind on updates. I've been meaning to write all week but sometimes, I just don't feel like talking about cancer.
On Wednesday, mom started a new round of chemo. We were at the clinic longer than expected because they wanted to run additional blood tests. The reason for the additional blood tests is because Tuesday morning, we had a scare which led me to believe that mom had some internal bleeding of the tumor or elsewhere. It was a side effect of the blood thinner lovenox. As soon as I suspected, I called the doctor's office and explained her symptoms. I was on the phone quite a bit Tuesday afternoon dealing with it. The doctor said that since it was just an isolated incident and mom was doing ok for the most part, that he'd order a INR test to monitor how the blood thinner is working. It's all such a fine delicate line...the blood thinner used to help the blood clot, but a symptom of that is that it can cause internal bleeding. Apart of me feels like if something sudden were to happen to mom as a result of these side effects that I'd blame myself. Mom relies heavily on my opinions (always has) when it comes to her medical treatment. All I know is that the decisions I've been making is something I would do if I were in the position. It's not so much that I am bombarding her with meds out of selfishness to save her no matter what the costs are.
Then on Friday, things just got bad. Not with mom but with me. While taking a shower before work, I slipped and fell in the bathtub and threw my back out completely. I layed there in so much pain and couldn't even move an inch. Luckily my husband was home! I was so frustrated that it happened. I had to burn valuable sick time because I literally could not move more than a few inches with feeling excruciating pain. I felt like someone snapped my tailbone in half like a twig. That afternoon, I went to my chiro and got an adjustment. He gave me a back brace and told me to ice, and rest it all weekend. I was pretty much ordered to stay in bed all weekend which I did. I remember laying there so upset and feeling completely useless. This was not happening. I had things to do for mom and had to take care of her! Every effort I made to try and push through the pain failed. I finally told myself to just rest. It was the best thing I could for myself and for mom.
On Wednesday, mom started a new round of chemo. We were at the clinic longer than expected because they wanted to run additional blood tests. The reason for the additional blood tests is because Tuesday morning, we had a scare which led me to believe that mom had some internal bleeding of the tumor or elsewhere. It was a side effect of the blood thinner lovenox. As soon as I suspected, I called the doctor's office and explained her symptoms. I was on the phone quite a bit Tuesday afternoon dealing with it. The doctor said that since it was just an isolated incident and mom was doing ok for the most part, that he'd order a INR test to monitor how the blood thinner is working. It's all such a fine delicate line...the blood thinner used to help the blood clot, but a symptom of that is that it can cause internal bleeding. Apart of me feels like if something sudden were to happen to mom as a result of these side effects that I'd blame myself. Mom relies heavily on my opinions (always has) when it comes to her medical treatment. All I know is that the decisions I've been making is something I would do if I were in the position. It's not so much that I am bombarding her with meds out of selfishness to save her no matter what the costs are.
Then on Friday, things just got bad. Not with mom but with me. While taking a shower before work, I slipped and fell in the bathtub and threw my back out completely. I layed there in so much pain and couldn't even move an inch. Luckily my husband was home! I was so frustrated that it happened. I had to burn valuable sick time because I literally could not move more than a few inches with feeling excruciating pain. I felt like someone snapped my tailbone in half like a twig. That afternoon, I went to my chiro and got an adjustment. He gave me a back brace and told me to ice, and rest it all weekend. I was pretty much ordered to stay in bed all weekend which I did. I remember laying there so upset and feeling completely useless. This was not happening. I had things to do for mom and had to take care of her! Every effort I made to try and push through the pain failed. I finally told myself to just rest. It was the best thing I could for myself and for mom.
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