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. 

You All Loved Me Through It

New found friend Linda, taken during chemo when I first met her which happens to be her birthday.

I met Linda in one of my chemo sessions.  She was very friendly.  Though she looked skinny, she is such a strong woman to me. She has been going through chemo for 8 years now and  I admire her resilience.  I only had 5 months of chemo and I almost quit.  I can't imagine going through it for years.  She has ovarian cancer which is tougher to detect and treat than breast cancer.  


One thing that is common to both of us is we are both BRCA positive cancer patients.  The Breast Cancer (BRCA) gene mutation increases the risk of breast cancer by 85% and increases the risk of ovarian cancer by 45%.


We talked a lot on our first meeting.  From where she could get a good iPad cover to more serious matters like cancer.  She became like a big sister to me, with tips on how to manage chemo's side-effects because she has been through it I guess for so many times.  I admire how she is still standing strong fighting and continuously believing that after all these years, chemo will help cure her ovarian cancer.  Aside from home remedies to alleviate the side-effects, she also mentioned a support group that she goes to regularly.


She invited me to join F.O.R.C.E., which stands for Facing Our Risk of Cancer Empowered.  It's an organization of  those who have hereditary genes BRCA 1 and 2 or have a family history of cancer. Having the BRCA gene like I do, we are at a higher risk of breast and ovarian cancer at any point in our lives. 


I was so caught up with my chemo that I didn't contact them for a long time. I was afraid that I cannot commit fully in attending the meetings once I start because I might not feel too well all the time.  I was also too shy or afraid to be in a big group to share my story. 


But all my fears subsided once I felt the warm reception from those with whom I've shared my story. The meeting was attended by about 30 women. We broke into two groups and started giving our introductions.  


Every woman's story was different. Every woman's reason for joining was unique.  I thought I would feel alienated being young with cancer but I was proved wrong.  In our smaller group, 4 of us were relatively young and 10 were older.  One woman had almost exactly the same experience like I had.  Being the newest in the group, I thought I would not have anything to contribute because I was pretty sure they all have gone through what I went through. But as I was introducing myself and my experience, everyone started crying. I couldn't help but cry too. I exceeded the one-minute limit of introduction but the moderator did not care. It was a moment that they all made me feel I was not alone in this journey. 


After hearing everyone's story, the group opened ourselves to questions and answers based on our own experiences.  I was surprised to find out that the one male in the group was a resource person. Dr. Richard Frieder, Medical Director of Genetic Testing/ Cancer Risk Assessment & Prevention, assisted us in understanding the medical side of our experiences.  We all have questions of "where do we go from here?" . 


Knowing we have the BRCA gene, we are all faced with the challenge of whether we will take steps to face our circumstance head-on or do we just acknowledge our risk?  What are the choices we have to make? What do we see in our future?


I have been anxious about this surgery ever since I was told that I need to get my ovaries removed before I turn 40.  But after hearing the stories of three women who have proactively had oophorectomy (surgical removal of the ovary), I felt relieved. They are doing well, living well and have taken the dark cloud over their heads out because of the surgery.

My share of experiences also helped some women who were contemplating on what to expect with double mastectomy, reconstruction, chemotherapy and radiation.  Some of these women have not gone through any of these yet and I was so happy to be of help.  


In the end, we were all invited to a "show and tell" where we can show our surgeries and reconstructions so that those who are trying to decide what kind they will have can have an informed decision. At first I was shy to show my breasts and abdominal scars but seeing how it will help other women, I became open to sharing mine. 


Despite our unique experiences, one thing I found out is common among us : all of us had our families and friends to lean on at this time of difficulty.  We could not have been strong enough without the love and support that we get from everyone around us.  Physically, mentally and emotionally we have all been challenged by cancer.  It didn't matter whether one is young or older.  It affects our lives all just the same.  


This group and our own little circles of life have been our stronghold.  The ropes that held us.  


I am so thankful that I decided to join the group.  From here on, I will become a source of strength for other cancer warriors like myself at the same time gain courage from them. It is something I look forward to.  Just like I look forward to seeing my family every day that I wake up and hearing from friends all over the world.

The odds are 1 out of 3 people worldwide know of someone who has cancer.  A little note, a pat on the back, a simple hello will make a difference in that person's life dealing with the big C.  Thank you, you all held my hand through it all with your love.



P.S. I want to share this song by Martina Mcbride written for breast cancer warriors and survivors, their families and their friends.  I also want to share an article contributed by David Haas, one of our blog readers who has been researching about the importance of support groups as a coping mechanism among cancer patients.  

Help us in this fight against breast cancer. If you can , please help in raising funds for Krissy's Breast Cancer treatment:

Chemo #5: Almost there

Learning from chemo #4, when the side-effects was painful and long, we tried to avert it this time by planning to go to rehydration a day after chemo #5 and continue for more as needed.

I went in for hydration on Tuesday, a day after chemo.  It helped during the first three days, alleviating the nausea and weakness but I still cannot taste food or tolerate liquids. 

On Friday, I thought I was strong enough and volunteered to drive to Seafood City in Carson, a Filipino grocery store.  As I was driving toward the 405 freeway entrance, I felt a little weak and felt I needed to go to the bathroom.  I made a U-turn and tried to go back home.  Good thing I wasn't too far away yet.  Suddenly my vision became blurred and it turned into an all-white vision.  I couldn't see anything but white cloudy shades.  I drove 5 mph to make it home and try not to get into an accident.

When I got home, I felt too weak I could barely get up.  We decided to call Jim at work to bring me to the hospital to get rehydrated again.  While waiting for Jim, my 2-year old son James, saw me crying (which I always try to hide from him as much as I can).  He came over me to hug me and in my weakness, I placed my head over his shoulder.  I didn't expect that at his age he can understand what was going on.  But he held my head over his shoulder and I could feel that he was comforting me.  It was a moment I can never forget.

Jim had to carry me to the car and get to UCLA.  As we arrived, the nurses have prepared everything needed for me and had to bring me to a room to lie down during infusion instead of the recliner we usually sit on.  I was also given Reglan thru IV. It is an antiemetic drug used 27 years ago to fight nausea and vomiting among chemotherapy patients.  My current medications ativan, zofran, compazine and sancuso patch have not been helping and have been causing severe constipation so my oncologist decided to put me on Reglan to try if it will work.

After 3 hours, I started to feel a little stronger, enough to walk back and sit on the wheelchair.

I went back for another hydration the following Monday.  This time I felt much better and started to eat and drink normally a day after.


It has been a better chemo cycle than chemo #4 from which we have learned how to forestall the side effects.  Although we still encountered a little difficulty, I was able to recover a little faster and have been able to get more food in body.  The depression still comes every now and then, which I still cannot pinpoint the cause most of the time.  I cry sometimes, feeling deep sadness without any cause.

My Med School friends from 12 years ago, Zennia, Jad, Mitch and Carol

But most of the time I felt surges of energy than ever before.  It helped that I have been getting a lot of visits from beloved friends that I forget my moments of weakness and sadness.  I ate with gusto with them like its a feast.  

College friends Irene and Iris and kids

I've set my mind that I will make something special for Jim's birthday on July 30.  Although I wasn't sure if I would have the energy, I still prepared myself by watching tens of YouTube videos on how to make a fondant birthday cake.  I have been a big fan of two of the best cake makers I know, Chris Edrei De Leon-Soriano (Cakes by Edrei) and Mayen Bioc-Orido (Way Beyond Cakes).  I know I couldn't do their works of art as well but their inspiration was enough for me to try making my first cake, for Jim.

Chocolate cake with buttercream icing and white fondant

Red velvet cake with buttercream icing and blue fondant with chocolate icing trims

I made it when Jim was at work, in between rest times, taking care of James and some household chores (which my mostly takes care of).  We also made a tray of Lumpiang Shanghai (Filipino egg rolls).  James and I surprised Jim with the cakes and Lumpia by bringing it to his work on his birthday.  Yes, he worked on his birthday.

I was happy that most of his co-workers, including Jim of course, liked the cakes and the lumpia. 

I never imagined how tiring and tedious cake-making was until I tried it myself.  All the more I admire how my friends Edrei (who is undergoing regular dialysis) and Mayen (who has a four year old and a newborn) can do this excellently.  If you visit their pages (please click the links above) you will see how great their cakes are.  I will almost think twice eating it and might just want to display it.

Aside from my friends visiting, one thing that has given me a lot of strength to fight chemo#5 is the effort and love of friends from Manila, Philippines.  A group of friends is organizing a benefit dinner on August 27 at the Orchid Gardens Suites, to help raise funds for my treatments and to help raise awareness on breast cancer among young women and men and on hereditary breast and ovarian cancer gene (BRCA gene).  They have opened the event to everyone who would like to join.  I never imagined that so many people care so much to make this event possible.  I wish I will be able to join them physically, if were not still undergoing treatment.

Next chemo, on August 8,  will be my last (hopefully!).  We will know if I need more chemotherapy or other treatments after they run PET scans, MRI, blood tests, ultrasound and full body scans the following week.  I will start radiation therapy on August 19, Monday thru Friday for 35 cycles.



I believe there's hope and an end to every challenge.  I'm almost there.  I know I will survive.

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