Faslodex Girls

Tina,

Oh ugh. Not a great development for you at all. [NEWBIES: avert your eyes now.] My nausea after the injection has been getting worse, but to date, I have not had vomiting or diarrhea. I just find that I need to sit for a bit before color returns to my face and I can drive home. If this were me, I would ask for some zofran to combat the vomiting. Have no idea about the diarrhea, but there must be something you could take?

Half-way through month 40 with this drug, there is no question in my mind that my body is responding more and more to these injections. For the first time, I did dread going to the hospital this month. And yes, I get the churlish part. I have decided that I can aknowledge my body's responses while also being grateful for how much good the Faslodex is doing for me. [Slow learner I guess.]

Gosh, this wasn't helpful to you at all, but it does feel good to state out loud that Faslodex is not without a price.

*susan*

I do get the nausea and the poopers for about 5 days after the inhection. So far, I've been managing with nausea meds and immodium. Does it get worse? I hope not, as I seem to be responding well to Faslodex.

Jennifer

I got my results Friday from my scans last week. It showed only scarring in my lungs where my tumors were, and no new tumors in my lungs or spine, or anywhere else. My bone scan did show more arthritis though. It is in my ankles, knees, shoulders, wrists, lower spine, and both SI joints (saca iliac, I'm sure I spelt that incorrectly!). I feel like I'm 80 instead of 51 most days. I asked my oncologist if the Faslodex would cause this. She said no. I said when I started the treatment a year ago, the scan only showed it in my left knee and lower back. I had my ovaries removed 8 years ago (when I was first diagnosed) and she said it could be the lack of estrogen (or none with the Faslodex) causing it. My cancer marker number was 22. So I'm happy for the results, but just wish I didn't have all these bone/joint pain every day and those darn hot flashes. It's been in the 90's all week, and I really don't need to be hotter! LOL

Anyone experiencing shortness of breath?  Mine started at the end of week four, just prior to my third loading dose.  Does it go away or am I stuck with it for the duration?

Sue

Ack! My oncologist's office just called to say he wouldn't be in next week for my regular appointment and injection, which would have been okay if I hadn't wanted to tell him about my nasty episode a few weeks ago. So I talked with his nurse and told her what had occured and my thoughts about the Faslodex causing my vomiting and diarrhea, and that it had happened several times in the past year. She had a tough time relating those SEs  to Faslodex, saying it was like a reaction to chemo, not a hormonal. She also said I was having "too many side effects on this treatment." These statements had the effect, unintended I hope, of making me feel like an outlier, or that maybe I should have talked with my PCP and not my oncologist.  Bottom line: she granted it was serious, said that something else could be going on in my body, and switched my appointment to Wednesday, so I could talk with the doctor. 

And now I feel weirder than ever. I would be extremely embarrassed if I were coming across as hypochondriacal or needy.

Am I losing it?

Tina

Tree, I fear being thought of as a hypochondriac by my doctor and nurse because I'm having symptoms I'm "not supposed to have" and blaming them on Faslodex.

That should be don't.

Tina, you should never think of yourself as a hypochondriac.  You're suffering from something.  Side effects or not, doesn't matter.  You're not making it up so you shouldn't feel bad bringing it up.  Do they think you LIKE throwing up? 

Maybe Faslodex is the culprit.  Maybe it's not.  At the very least they should give you drugs to prevent/help if/when this happens again. 

Susan, et al,

Thank you for your responses. They help me feel less odd-woman-out.

To clarify, I have not had these issues every month, but have at least three times in the past year, with the most recent being by far the worst. I had assumed it had been food poisoning/GI virus, altitude sickness, food poisoning/GI virus in that order, even though that would be highly unusual for me. I did not really put it together with the Faslodex until now, probably because I have been trying hard to be a model patient and felt I was already pushing my luck because of my complaints about injection issues and back pain. The legitimate online sites (Medline, bc.org, etc. ) list nausea, vomiting and diarrhea among the primary or secondary possible SEs from Faslodex, and they are also listed in the clinical trials on the Astra-Zeneca site, yet my very experienced nurse, my oncologist's trusted right-hand person, said yesterday that such SEs were not associated with this treatment.

How am I supposed to react to that?

I am trying to determine how to approach Wednesday without being defensive or challenging of my tiny "medical team," but I am feeling both in addition to at sea as to how to proceed in the future. Unfortunately this situation has brought up ancient feelings of helplessness at the hands of all-powerful "authority figures" which is patently ridiculous under the circumstances, but they are running away with my emotions right now and making me feel entirely too vulnerable.

Tina

Thanks, Latte. You're absolutely right. I was attempting to do just that when I spoke with the nurse yesterday. I just wanted to register my theory with her (perhaps a strategic error), and asked her to ask my onc to leave an Rx for vomiting and diarrhea before he left on vacation. But that's when she told me these SEs are not usual, and to come in before he goes on vacation and talk with him.

Yes, Faslodex is working to keep my lung mets stable and the rest of me NED. I would like to stay on it just like I would like to stay with my onc (Dept. of The Devil You Know). You're right about it not being necessary to know what causes problems in order to address them, but I have always been intent on determining reasons and causes. I'll try to change, but I'm afraid that's a remote possibility at my age!

Tina

Now that my body has no nails left to spit and I have drunk 2 litres of water, I came back to say exactly what Latte has posted. The question isn't "Fix this because Faslodex causes these things" but, my body is doing these things, it is bad, and I need strategies to fix the symptoms [or prevent them.] If Dr. Devil isn't comfortable with this, then ask for a referral, or go straight to your primary.

it isn't a question that you are having issues. The question is, who can help you since it is unhealthy to withstand of week of these problems.

Make sense?

*susan*

Hi, I'm reposting this from Thursday as I'm hoping for some answers to my dilemma.

Anyone experiencing shortness of breath?  Mine started at the end of week four, just prior to my third loading dose.  Does it go away or am I stuck with it for the duration?

Any help would be appreciated!

Sue

Mile, I haven't had shortness of breath except when my lung collapsed following gallbladder surgery. I didn't even have mets to my lung. I would call someone. They like to know about these kinds of things.

All the best,

*susan*

Sue, I had some puzzling shortness of breath a year or so ago after not having had it for many months since I'd been treated with Faslodex. I reported it to my onc on my next visit. He asked the radiologist to "rule out pulmonary embolism" on my next scan.

Obviously, this can be a serious complication. Depending on severity I would call your onc's office and report it Monday morning or, as suggested above, get to an ER now.

(BTW, my scan showed no embolism and my SOB cleared up on its own.)

Tina

Sue, it cleared up within several months. My lungs seem just fine now. As for yours, maybe the issue is not the Faslodex. Do you have asthma or allergies? (Either can start at any time of life.) Are you in the Denver area? I remembered that the Mile-High City is prone to some fierce air pollution problems and just found this: http://www.colorado.gov/airquality/advisory.aspx

Hope you feel better soon.

Tina