Thursday, October 25, 2012

Always Have Hope

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.

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.

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.

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.