World Ovarian Cancer Day: spread the word

May 8 is World Ovarian Cancer day and my goal for the day is to spread awareness with key facts and symptoms. Being a 4 year patient living with cancer, I want to also share the list of treatments I have had and the main list of drugs I use for coping with nausea. Lastly, I will include my tips for living with cancer. Being online during many days at chemo, I have had contact with cancer patients all over the world. Many cancer patients did not have the knowledge or even access to the right drugs for coping with  nausea (#1 side effect of chemo drugs). Sadly, many patients are told to go home to be on hospice after first or second line treatment because their doctor lacks the knowledge to think outside the box (or outside the square as they say in some countries) and try different chemo combos. In light of a recent NY Times article where a doctor’s wife dies of cancer, it convinced me of the importance of my rule #1: be your own advocate. This article seems to promote the wrong message based solely on statistics that there is no point in doing more chemo since it causes more side effects/chemo resistant cells. Since statistically there isn’t anything gained in progression free survival, this article promotes the do nothing idea and fails to recognize that the women who are wives, mothers, sisters, friends, aunts, grandmothers are more than just a number. The women I hear from want to live and want options. Many feel that they are not part of the statistics. My hope is that this post can be used to give to doctors as a talking point. My other hope is that my tips which continue to help me live with cancer may help others. 

5 Key Facts

1. All women are at risk of ovarian cancer
2. Awareness of the early warning signs of the disease could save lives
3. Diagnosis at an early stage vastly improves a woman’s chance of survival
4. Ovarian cancer is often diagnosed at a late stage.
5. Many women mistakenly believe the cervical smear test (Pap test) will detect ovarian cancer

 

Symptoms of ovarian cancer can often be confused with other less serious conditions such as gastrointestinal disorders. Symptoms include:

• Increased abdominal size / persistent bloating (not bloating that comes and goes)
• Difficulty eating/feeling full quickly
• Abdominal or pelvic pain
• Needing to pass urine more urgently or more frequently
List of chemo combo/treatments I have done over the past 4 years
1. carbo/taxol/avastin
2. gemzar/carbo
3. cvac (dendritic vaccine trial)
4. topotecan
5. doxil
6. doxil plus afinitor
7. alimta, carbo, avastin
8. alimta, carbo only (bad reaction to avastin)
9. alimta, oxaliplatin (allergic to carbo now)
10. sorafenib
11. another trial called cdk1
12. weekly low dose abraxane, with votrient
13. weekly low dose abraxane, gemzar
14. weekly low dose oxaliplatin/gemzar
15. xeloda/cyclophosphamide
16. ixempra/irinotecan weekly, low dose
17. Single dose iXempra, could not tolerate irinotecan
18. Low dose navelbine and epirubicin
19. Decitabine (day 1 to 5), low dose Cisplatin day 8
20. decitabine (day 1 to 5), oxaliplatin day 8
21. decitabine day 1 to 5, abraxane 125mg, gemzar 400 mg
Side effect of chemo: Nausea 
Don’t chase your nausea, it’s a race that will end in the bathroom.
Day before chemo: you may be taking steroids called decadron (dose can be 5mg to 10mg)
Day of chemo:
You can get drugs in your IV called pre-meds before getting chemo like: decadron, Benadryl, aloxi, and emend or Zofran
NOTE: there are also emend pill packs when you take one pill before chemo starts, and one pill for the next 2 days
About Zofran: Zofran is the “go to” drug, but if it isn’t working for you (I take 4 mg so I can add more during the day)
Other drugs for nausea: kitral (oral), Sancuso patch, Reglan (can be taken with Zofran and doesn’t cause constipation like most anti nausea pills)
TIP: if you were pregnant and extremely nauseous or get sea sick, you may require more anti nausea drugs. Don’t accept being nauseous!
Recommendations in order of preference: Reglan!
Recommendations in order for treating little nausea to bringing out the big guns: Zofran, Aloxi in IV, Emend (can be taken on same day with Aloxi), and Sancuso patch. (Reglan can be added in the mix) (p.s. compazine and ativan can work, but just did not work for me)
NOTE: Sancuso patch is expensive but insurance will cover it if all other meds failed. Either ask your docs office to help or call a patient advocate at your insurance.
Lessons learned living with cancer
“everything you always wanted to know about SURVIVING cancer, but are afraid to ask!
 
1. Be your own advocate BYOA
2 mistakes happen
3. Take control of your treatment TCT
4. Drug dosage based on 200lb man, you may need to adjust the dosage
5. Sometimes there are no answers
6. Living with the unknown, part of the journey, try to accept it and live in the present
7 it’s okay to visit the island of negativity, but make sure it is a short flight
8. There is always someone sicker than you, dying today, yelling for your doctors attention, so choose to be demanding at the right time
9. Nurses are the best source of info
10. Ask questions, don’t be afraid
11. Ask for help, to friends, neighbors, co workers, and be specific!
12 for you to succeed, you can’t do this alone, this journey requires you to get help,
13. Take notes and have someone else present, each person hears different things.
14. Eat and drink , whatever, whenever, your body needs fluids and nutrition to fight the cancer
15. Seek out 2nd , 3rd , 4th opinion, you can learn something from every doc.
16 use your time wisely and save your energy for what is important to you.
17. Think outside the box, have an oncologist who thinks the same way or find a new one.
18. Find your style, dress for a successful chemo! Mind over matter.
19. NEGU: Never Ever Give Up
20. Hope is a 4 letter word, so never lose hope
21. Get in the right head space to get chemo, don’t let the visual image crowd your brain with negativity, surround yourself with positivity and stay in your happy place. It requires a lot of energy, but you can sleep later.
22. Know your history, review your imaging, learn the lingo, talk to a radiologist who can translate and become a fake doctor. A good radiology report requires a skilled technician and a skilled radiologist with an attention to all details especially the small ones.  A second glance can make the difference in starting or stopping a treatment or getting into a clinical trial.
23. Knowledge is power. You may not get every side effect of a drug, but it is better to be prepared.
24. Connect with others and stay connected with those who care about you and give you joy and happiness.
25. Take a walk even if it is for 5 minutes.The air can clear your head and mind from the fog of treatment or fear of the unknown.
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