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.  

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