Life after Tamoxifen

It has been a long time since I last updated my blog.  I just opened my blog site again and saw when I last posted and what my last post was. I have always complained of headaches and bone pains with Tamoxifen but we were so afraid to risk stopping it.  I had a two week break in February 2012. It was not long enough to see any difference on how I feel.

In February 2013, I stopped taking Tamoxifen again as advised by my oncologist to see whether it was what was causing my headaches. Soon after, I think about three weeks into it, I had my blood tests and it showed increased tumor markers CA-125 and CEA. I immediately had PET scans and CT scans to confirm the tests.  It showed metastases of cancer in the mediastinal lymph nodes which surrounds or are under the heart and the chest.

It was March 2013, I was re-staged to Stage IV, two years after my first diagnosis.  Because of my BRCA (BReast CAncer) mutated gene or BRCA-2, and previous chemotherapy, I had to be on a different chemo cocktail. This time, it has to be on a stronger dose and more frequency.

My oncologist wanted to be sure that the chemotherapy will work with the metastases and the BRCA-2.  At that time, he was heading a research team on a clinical drug trial for metastatic breast cancer patients with BRCA mutated genes.  After undergoing screening, I was accepted into the program. It was a blind study for the drug Veliparib which is aimed at treating "difficult-to-treat-tumor-types"

I had a cocktail of Carboplatin and Paclitaxel in combination with the clinical drug trial. (The research team believes I was given the Veliparib based on the blood tests). I started my treatment in April 2013, every 3 weeks, indefinitely for as long as the treatment is working.

It was a very difficult treatment compared to my first chemotherapy in 2011.  The side effects started to occur as soon as the second cycle.  Vomiting, nausea, loss of hair, loss of appetite, constipation, overall sickness and headaches.

On the 4th cycle, I started to get hospitalized after each treatment. I started to have nerve pains on the back, numbness and tingling sensations on both hands and feet, also known as peripheral neuropathy.

After the 6th cycle, my oncologist decided that my body cannot handle the toxicity of the treatment anymore.  They performed another series of scans and it showed that 5 of the 6 lymph nodes cannot be seen anymore and one is very small that could be considered shrunk.

In November 2013, I stopped my treatments.

In December 2013, my tumor markers have gone back to normal and no abnormal or cancerous lymph nodes were showing in my scans.

I went back to taking Tamoxifen soon after my chemotherapy.

But the side effects from the clinical drug trial and chemotherapy lingered since.  Since November 2013, I started to have severe migraines, double vision, confusion, loss for words and memory loss.

In January 2014, I started to have a seizure and loss of consciousness. Followed by another one in February 2014 during a hospitalization.  I have been since under the care of an oncologist-neurologist since then. I was prescribed Ritalin to help with the confusion, inability to stay awake during the day (as a result of my anti-depressants which I take at night), and Topomax for the severe migraines.

I also stopped Tamoxifen, again.  This time for a longer period. I went to get a second opinion, from my previous oncologist and he told me to stop Tamoxifen altogether. I haven't gone back to taking it since March 2014. I have had 3 blood tumor marker tests since then and they have all been normal.

Oncologist #2  prescribed me Anastrazole, which is for post-menopausal women. When I went to CVS, they won't fill it, because it is for post-menopausal women.  The insurance won't cover it either because I am under the menopausal age. The doctor has to change it but there was no other alternative but Tamoxifen.  I gave up.

I've been okay since then with my tumor markers, I have not had any scans though.  I lost my Blue Shield insurance after the Obama-care and have not been able to afford the same kind of health care without choosing between the food we will eat or getting a hospital check up.  That will be another blog post.

I have so many things to share about my journey since then.  But life after Tamoxifen, it didn't make a difference in my experience.  Without it in 2013 for two weeks, my cancer immediately came back.  Without it in 2014 for 10 months, I have been fine.  As Oncologist #2 told me, he could give me placebo and say it was Tamoxifen and it wouldn't make a difference.

I hope to hear from other women who were/are taking Tamoxifen. 

Chemo #4: I almost wanted to quit

Chemo #4 was tough. From the morning, I had to take the bus because Jim, my better half, had to take our son James to Children's Hospital. James was born with multicystic dysplastic left kidney (his left kidney is a composed of dozens of cysts looking like a kidney but it does not function), we have to take him regularly to his nephrologist and urologist at Childrens. I had to leave at 7 am to make it to my 10:00 am appointment. I was leery of taking the bus because my immune system is not as strong as it used to be and being in a enclosed public transportation, I can catch germs easily. A seemingly-homeless man was sitting next to me the whole time and even with my face mask on, I could smell something unsanitary. But I made it. I got to the hospital safe.

Usually, three to four days after Chemo, I would start to be able to taste at least strong tasting food. The first few days are really tough and I expect it. Soil-like texture of food, bitter-tasting drinks, weakness and tiredness. But this time around it was taking longer than usual.

On the sixth day, I was still weak, and cannot eat or drink anything. I called my doctor to ask if I can do anything. He told me to come in the following week (it was a saturday when I called) so they can check me out.

On the seventh day, I cannot handle the feeling of being weak anymore. I almost slept all day, I couldn't help take care of James and just couldn't walk without feeling like I will fall anytime. My hip bones down to my feet were all painful and weak. So I emailed my oncology nurse practitioner: I would like to stop at chemo #4. And I dont think I can do radiation either.

I have a scheduled initial appointment with my radiation oncologist that Thursday, July 7 and I was planning to cancel it too.

That Monday, the chemo infusion center called me early in the morning to ask if I can come in for hydration. I agreed and went to the hospital. They checked my vitals and weight and took blood tests. I lost 8 pounds in 1 week. I was also dehydrated and my heart rate was fast (135 per minute). They gave me two hours of hydration via chemo port.

After two days, I started to feel better. I started to taste the food and drinks. Although my usual drink, Gatorade, was still bitter, I found an alternative. I loved the taste of Naked Mango smoothie. It was the only drink I can tolerate for now. I even had a date night with Jim and ate a salad. Wow! I got so excited because it means this is a start of feeling better again before I go for the next infusion.

So far, this is the worst side-effects I have experienced. But even though it took longer that it used to be, I started to have hope that there will be an end to every suffering. I am so grateful for Jim and my mom. My mom took care of James the whole day while taking care of my dad too, and tried to make me eat by cooking what supposed to be really are yummy Filipino dishes. And Jim, even though he was very tired after work, he would take James out and entertain him or keep him busy to give me more time to rest.

Its amazing that a lot of people care for me so much that they go out of their way to help me recover.

Its even more amazing that there are a lot of people all over the world who care and love me. We started a fundraising to help us with the medical bills which has been summing up to $228,000 and still adding up. (chemotherapy and radiation are not yet billed). It will also be funding the possible litigation against the insurance company if we cannot resolve it by arbitration or other means.

Right now, we are awaiting for an approval or denial of my radiation treatment. We will decide what to do or where to go for my radiation treatment depending on what the insurance says.

We want to thank all of our friends and families who have helped us in the fundraising.  It was very humbling but I know all your love comes with it.  Some have donated very generously, some donated even though they dont have that much and it is a form of sacrifice, some helped by posting it in their Facebook walls, blogs and websites. Some sent a handwritten card with their donation (which I got so excited about because I seldom receive a card in the postal mail anymore). Some sent more prayers and well wishes for recovery. One friend suggested to make t-shirts which I hope will be successful. These are people whom I have known for decades, have just met these past years, and some don't even know me.

One very special friend, Mike Cortez, is publishing THREE coffee table books to raise funds. He made a preview of the book in a video below.  You can email him at senseimiyaki@gmail.com.



All these love all over the world, all the support I have been receiving made me think twice... why would I quit my treatment? No. I will finish the battle. It may be tough, but I can get through it again.

Chemo #2 and #3- Learning honesty, humility, patience and hope

Honesty, humility, patience and hope. These are some of the things I have learned in the past 6 weeks I have received two chemo treatments.

I have been waiting for the day to write a blog entry when I'm feeling more hopeful, up and energetic and can express my joys despite the current treatment I'm going through. It has taken a while.

In fact, as much as I want to deny it or conceal it from everyone, I've been depressed.  I've been reading lately how chemotherapy can bring about depression. But luckily, I am going through counseling and taking several anti-depressants.

I've been holding off writing a blog because I thought I should be this positive and strong person when I face people reading the blog.  The longer I push myself to be that person, the more I became depressed, because I feel like I'm failing people's expectations to be that strong and fighting person with cancer.

The truth is, I am having a lot to take on.  From physical pain, to anxieties of what the future holds, financial hardship from treatment costs, exhaustion from just doing normal daily activities, loneliness from not being able to socialize as before, frustration from not being able to enjoy the things I used to do and most of all, the fear of death.

Sometimes a simple question I get such as "How are you doing? Hope everything's well" is tough to face.  Should I say,  "I'm fine.  Just in a lot of pain lately and in a deep sadness which I dont know why" ?

But in counseling, my therapist told me its okay to be sad and be weak and it's okay for people to know this.  Its all part of what I am going through and will go through.  Putting on a face thats not me just puts on another burden on top of what I have.

Chemo #2 hit me hard the second day with severe nausea and fatigue. I have taken all the prescribed medicines but nothing seems to work. I felt like there's a metallic layer all over my mouth that everything I taste is like metal. I'm hungry but I cannot eat. I feel like my appetite is also decreasing. I want to get up from bed but my body refuses to. I decided that I will speak with my doctor that this is it, I will stop at chemo #2.

But I wrote about it on facebook. Everyone cheered me up. Everyone gave me hope. Everyone wanted me to fight. A stare at James playing made me want to hit myself for thinking of giving up. Jim and I  are the only people he has to take care of him. What am I thinking?

So I went on day-after-day, waiting for the side-effects to subside. The doctor finally prescribed an anti-nausea patch, Sancuso transdermal patch,  that will give me 7-days of continuous medication to relieve nausea. It gave me hope at first but when we found out that the cost is $309 per patch, that will be a total of $927 for three weeks until my next chemo. Jim just got back to work and we are a little struggling with the finances with all the expenses of my treatments.

We were able to buy one patch, and luckily, the doctor gave us a one-time discount coupon for $200 so we only had to pay $109. I cherished every day that the patch gave me the relief.

I got through three weeks from chemo #2 and was feeling great and energetic the day before chemo #3. I almost dreaded another monday of going back for another infusion.

I had chemo #3 on June 6, 2011. This time, I followed my doctor's instruction to put lidocaine numbing cream on my port and take Percocet pain medication an hour before they will stick the needles in. It worked! I didn't feel the needle at all. But this time, after the 6-hour infusion, my fatigue and stomach pain was worse than it has ever been. I don't want to get up from bed, i feel like my stomach and intestines are getting pulled out of my gut. I'm refusing to eat or drink anything (aside from 7-11's slurpee). This time, I'm decided, I don't want to go through the rest of it anymore.

And then came all the supportive messages again from friends, cheering me on. Telling me how I am inspiring them. A part of me want to tell them, "no, I'm weaker than what you think I am, I am about to quit it". But my heart just cant. How can let all these people believing in me down?

The battle in my mind of wanting to give up and staying positive makes me sometimes want to throw myself on the wall. Most of the time I feel so confused. I know its part of a cancer patient's life to be depressed and anxious and confused. This is real and I can feel it everyday. All I want is for everything to stop and go back to normal. I want my old normal life again.

All I want is:
-to taste the sour vinegar
-chew food and savor its flavor
-be able to get up and do everyday household chores
-be able to walk James to the park
-play with James at home all day if he likes to
-go out to do errands, go grocery-shopping, etc
-visit friends and spend some time just chatting over coffee
-drink and taste anything my mouth desires.
-work
-a simple trip to see the oceanside or a quiet park
-bring James to museums and parks
-wake up without feeling sick

These are the things I never appreciated before. The littlest things that seem to matter now. Humility. The simplest things matter most when you aren't given the chance to do it. I used to wish for grandier things. A house, better car, a great travel vacation, a great job, bring James to disneyland, a grand wedding, visits to the Philippines, and a whole lot of other bigger things. Now I just want to feel better today.

These two treatments have also taught me patience. No matter what my mind does, I cannot force time and space to move forward to another day with the hope that it will be better tomorrow. I have to wait. I have to go through the whole 24 hours and wait if it will feel better tomorrow. And if it doesn't, I will wait another day. This experience has made me look forward to night times, when everything is quiet and I have to go to sleep. Not feel anything and not be in pain. When my mind momentarily forgets the slow but painful effects of the treatments. Patience. I go from one day to another day. And eventually those days turn into a week and then another week. And then the whole three weeks have passed. I survived another infusion.

Hope. There is really hope in the midst of challenges. Just when I thought I will just have to endure the rest of the two weeks without the expensive patch, just because we cannot afford it for three weeks, I found a website that will help in paying for the patches if I qualified. ProstraCare, Patient Assistance Program.  I tried, applied and God is GOOD! I was approved for 4 patches a month at no cost for six months. God never ceases to let go of me. He knows when I need his help most. They just sent the first shipment and everything will be taken cared of from hereon.  The patient representative who helped me was Filipina, her name is Glory, based in Illinois and she was so sympathetic.  I felt her love and concern even just over the phone.  (I had to send her James and my picture with a thank you note for helping us through the process).

A patient's challenge doesn't end in trying to feel better everyday and getting through the rough effects of treatments.  It gets complicated by the insurance company trying to refuse to pay for the treatments from diagnosis to surgery to chemo.  The bills keep coming summing up to almost $180,000.  It is the last thing one needs at this time, to be more stressed.Studies have indicated that stress can affect tumor growth and spread, but the precise biological mechanisms underlying these effects are not well understood. Scientists have suggested that the effects of stress on the immune system may in turn affect the growth of some tumors. (Psychological Stress and Cancer)

Challenges may continue in this journey but I'll try my best to continue holding on....and continue learning.

If you can , please help in raising funds for Krissy's Breast Cancer treatment:

The Day It Starts To Fall Off

It's different when everyone at the doctor's office tells you your hair will fall off eventually. I see it in the chemo room sometimes, some patients don't wear wigs and just put a cap on that you see their bare scalp. Its easier knowing it.

But when it actually happens, no matter how much I read on it, see it or hear about it, it seems tougher to muster up the feelings that comes with the reality. My hair started to fall off tonight.

It started with an itchy scalp at the back of my head. Scratched it of course and there goes a bunch of hair strands between my fingers. I did it again and it still continues.

I have to cry a bit to express the sadness of reality. Jim is tougher than me so I just leaned over to him and put his arms around me and more tears trickled down.

This is the start of it. I know they say it will grow back and I can wear a wig. For me, It's a physical manifestation of the cancer for me that I cannot deny when I look in the mirror.

Sometimes when my energy is up I tend to forget I have the big C. And go on with the day until I feel fatigued. But looking at a balding head is an instant sign that I have it.

As my friend Abi just texted me, it will grow back and it will just be part of getting the treatments to get better.

I guess so. For now, I'll be adjusting with the fact for a little while. Maybe cry for just a while... like my great friend Mike Cortez sent me in a video... " Coz deep inside this armor, the warrior is a child"

If you can , please help in raising funds for Krissy's Breast Cancer treatment: