Episode 15 - A Day in the Life with Metastatic Breast Cancer

Hello again! I hope you all survived this crazy winter, and your spring is off to a great beginning. I’m still here, and after the lovely health report I got at the New Year, hoping to remain so for the foreseeable future. While I’m enthusiastic and hopeful, I know I must remain present for the day to day stuff. The dumb, boring, but essential day to day stuff that I must do - and what all of us with this diagnosis must do - to stay strong, stay hydrated, and stay on top of the meds, procedures, and treatments designed to keep the cancer at bay. I am also concentrating on staying aware of new information, as well as on being a strong advocate for myself. This is the direction I will be taking today, and I hope you will benefit from what I’ve just recently learned and experienced.

For the last four years, my treatment has included taking twice daily doses of Verzenio, and a single daily dose of an aromatase inhibitor. Recently, I found I am allergic to all of the available pill form meds designed to block estrogen, and so started monthly injections of Faslodex, instead. Every six months, it is time for a CT scan, a visit to nuclear medicine for a full body bone scan, and every three months a blood test, visit with oncologist, and last, but not least, an IV infusion of Zometa, to strengthen my bones While I am not over the moon about all of this, it has become routine, and oddly, almost none of these events makes me feel as though I am seriously ill - just stuff I gotta do. But that Zometa infusion! Ugh. I really hate it. Not only because I have to endure yet another struggle to get an IV in, but also because the procedure takes about 45 minutes to complete. The techs are all great, and everyone tries their best not to cause pain, or discomfort, but it is the one treatment that reminds me of what a sick girl I really am. And that sucks. AND, common side effects of Zometa are “flu like symptoms” that last a couple of days after the infusion. Those side effects, for me, present as body aches, a low fever, fatigue, taste aversions, and just general yuckiness. Well! After four years of this, I just found out from a friend who shares my diagnosis that we should be taking an anti-histamine the day before, and the day of our scheduled infusion to ameliorate the side effects! Neither one of us had ever been told this before, and I promise you, when you l looked up the Zometa pharmaceutical site online, there is no mention of this anti-histamine trick. So! I’m telling you. Jeez. Who knew? When I looked this up (I've included the URLS for all of this stuff in the text accompanying this video on my Blogger page) via https://www.oncolink.org/cancer-treatment/oncolink-rx/diphenhydramine-hydrochloride-benadryl-R-oral-iv-im-topical#:~:text=Diphenhydramine%20hydrochloride%20is%20sometimes%20given,you%20home%20from%20your%20appointment) I found this info: 

Yes, many breast cancer oncologists do recommend taking an antihistamine, like Claritin (loratadine), before a Zometa infusion, as it can help mitigate potential side effects like bone pain and flu-like symptoms often associated with the medication; always consult your doctor for specific guidance regarding pre-medication for your Zometa treatment. 

Key points to remember:

• Reasoning: Zometa can sometimes trigger histamine release in the body. 

• Common antihistamine: Loratadine (Claritin) is frequently suggested. 

• Important to consult your doctor: Always discuss with your oncologist whether pre-medication                 with an antihistamine is appropriate for your specific situation.

After I’d gotten this advice from my friend, and looked it up (see above), I also checked with my doctor, and with the Cancer Institute - they all confirmed this is a common practice, and I should try it. Sigh. I found much the same advice for avoiding unpleasant side effects of Faslodex injections (https://www.oncolink.org/cancer-treatment/oncolink-rx/diphenhydramine-hydrochloride-benadryl-R-oral-iv-im-topical).  I did this just before my monthly injection yesterday, and it made a big difference. Again, check with your doctor before taking ANY medication. They need to know. 

Some information just doesn’t always get disseminated the way we’d like, so ask lots of questions, and go directly to the pharmaceutical site online to find out all you can about the meds you’re being prescribed - Don’t rely on your pharmacist to inform you. Some things get missed. 

While I had been advised by the speciality pharmacy supplying my Verzenio not to drink the juice of, or eat grapefruit while being prescribed this big dog of a cancer med, my friend had never been told this. She had a pretty nasty reaction to having a glass of grapefruit juice, and reported this to her doctor, who only then let her know. Now, this piece of information is noted in the literature about Verzenio, but you have to look for it. So, again, in the interest of helping another woman avoid a bad reaction, I pass this info along to you. And urge you to be better than I have been about staying educated, and being a strong advocate for myself. 

And speaking of advocating for yourself, I recently found that not all the staff at my cancer clinic are aware of the benefits of warming the Faslodex solution prior to injection, and the need to slowly, slowly (it takes 2 minutes per injection, and you need two each time) inject the solution into each side of your tushi. When these steps are taken, there is virtually no pain, or discomfort during the procedure, and the residual side effects after are mild. I promise you, if the solution is injected cold, and quickly, it hurts like hell, and can leave you with a large, hard lump under the skin that takes days to go away. So! While you don’t want to annoy, or alienate your caregiver doing your injection, advocate for yourself, and request these steps be taken. I would not have known this unless a very experienced, and kind cancer clinic nurse had not informed me. Perhaps, were I a part of a breast cancer support group, I might have heard this earlier, but I am not in one, so there you go.

When I was first diagnosed, I was urged by friends to become part of some breast cancer support groups - that it might help me with the shock, and horror of those early days. Well, I’m a stubborn, sometimes cranky, and irascible woman not inclined to join ANY clubs, or groups, and I did not take their advice. My philosophy about joining clubs, and groups has always been similar to that of the late great news man, Walter Cronkite. He opined he didn’t want to be in a club with people with whom he had just one thing in common. Well, maybe. Had I, and had my equally stubborn and irascible friend, availed ourselves of these groups and clubs, we might have found out some of this stuff earlier. Alas, we did not. Perhaps you will be more receptive. It is all about getting the information, and support you need, and in the manner best for you. So! Here’s to the continued search for the best ways to deal with the everyday-ness of metastatic breast cancer!

Perhaps tuning in to this vlog will provide you good information, too! That was my plan when I started it a year and a half ago. I keep learning, and so will continue to pass along the information I glean, and relate my experiences riding the breast cancer carousel. If you’ve enjoyed following along with me, please subscribe! And thanks again for listening.