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. 

Almost Half of Young Breast Cancer Patients Stop Tamoxifen Early

I was searching for effects of stopping tamoxifen early. Because right now I feel a splitting headache that radiates down my neck, feeling nauseated, feverish and feeling like I'm coming down with a flu.

Its nothing compared to the bone pains, fatigue and sometimes waking up and not being able to get out of bed because of bone and joint pains. Tamoxifen side effects can hit BC survivors worse who are pre-menopausal.

It's not a self-fulfilling prophecy because my oncologist and I didn't know if it was from tamoxifen until I was allowed to temporarily stop for two weeks. Two weeks, that's all the break I could get. Of course it's up to me if I will take my medication again and live the next five years with severe bone pains, exploding hot flashes that feel like being on fire from head to toe, confusion and difficulty concentrating, lack of libido, fatigue on top of fatigue from running after an active toddler, menopausal symptoms and not being allowed to have a child until hormone treatment is over.

I don't want to be part of the statistics that stopped their medication to alleviate the life-affecting and debilitating side effects. USA today and the American society of Clinical Oncologists reported that Half of Breast Cancer patients stop taking hormone drug But I also don't want to suffer for five years. A survivor's body has been a battlefield, from battery of tests to diagnose, to surgeries, to chemotherapy, to radiation and now the side effects of drug treatment. But diagnostic tests, surgeries, chemotherapy and radiation are all time-limited. You see the light of each tunnel and there are options given to ease the side effects. Five years to live with pains seems too long.

I wish there was a way to alleviate the severe side effects among young women to help us adhere to the treatment long enough to finish it. The side effects are not just a list on the drug label. Its real and I experience it.

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

Tamoxifen and Bone Pains

On November 8, 2011, I was declared NED or No Evidence of Disease by my oncologist.  Commonly, we know it as in remission.  After my blood test results showing no increase in my tumor markers CEA (Carcinoembryonic Antigen), CA125  (screening for ovarian cancer) and CA 27.29 , antigen found in breast cancer patients.

My oncologist told me though that to be declared in remission, I have to be NED for 5 years and to be cancer-free, I have to be NED for 10 years.

Three months have passed again and my blood test recently on January 27 showed that my CA 125 and CA27.29 are within normal limits still but my CEA is elevated at 5.1  (Normal limit is 3.0)  My PET scan, brain MRI, lung and liver scans show that there is no metastasis or spreading of cancer.

However I have been experiencing severe bone pains, tiredness and coughing for more than 1 month.  My oncologist is still trying to investigate where it is coming from.  I asked if it could be from tamoxifen, the hormone therapy drug that I started taking in November to shield me from cancer recurrence.

We are trying to find out the cause. I will be off tamoxifen for two weeks and will come back to see Dr. Audeh of Cedar Sinai to report the difference in how I feel.

I have not been taking Tamoxifen for one week now and I have not been feeling the bone pains and the coughing has gone away. There is still a little tiredness but better compared to when I was taking the medication.

Could it be tamoxifen that makes me feel tired, the bone pains and difficulty in breathing?  These are listed among the drug's side effects from what I read but the statistics are low. On the other hand, I have non-stop headaches.  No pain reliever has helped so far.

Now, I am just relishing being bone pain free. I should be thankful that there is a drug that can help me reduce the possibility of recurrence.  But I wish there were less side effects on me.

If you are taking or have taken or know of someone who has taken tamoxifen, what side effects have you or they felt?  What recommendations were given by your/their oncologist to ease the side effects?

The journey continues... to take tamoxifen and live with the side effects that come with it or take the risk and be pain free?

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