Faslodex Girls

Thanks, Tish, and you're still doing well. I just want to postpone it for a week and you're making me feel less guilty. Guilty? That is exactly what I'm feeling. Maybe scared is a better word. I mean if things go down hill I will blame it on my missing my meds by a week. I need to talk to my onc.

Deep breath. I've been processing this for several days and feel ready to share.

On Thursday I asked my oncologist the question I discussed on this thread last week. I had thought hard about how to preface and phrase it. After the doctor examined me and asked, as he usually does, "Any questions?", I asked THE question. I couched it something like, "Our trip to Rome was so wonderful, I am hoping to take many more vacations that may require a fair amount of physical activity. Considering your experience and my reaction to treatment, how long do you think I could maintain my current stability and quality of life as related to cancer and only to cancer--aging issues aside?" I prefaced this question by stressing that I realize he is not an oracle and understand he cannot give a definitive answer.

He is a smart, thoughtful, very calm guy of few but exceptionally well-chosen words. He sat down, took a moment, looked me straight in the eye as always, and gave me a carefully phrased, considered and sincere response.

He began with something about everyone being different and I acknowledged for not the first time that I realized this. Then he said, "At this quality of life, a decade or more is not unlikely." He added that the drug treatment would be likely to change. My partner asked if the change in drug treatment would allow me to continue at the same quality of life. He said "Yes."  And he added that all of this would be before chemo, indicating that his thinking is based on that I have what appears to be an "indolent" cancer (it took decades for the mets to show up in any noticeable way) and my good response to Faslodex. He made sure to say this timeline is not guaranteed. He then cited an example of one patient with lung mets who has been in treatment for 20 years and is still pre-chemo.

I want to thank Susan and Tree for their frank input. Their honest reactions to my popping-the-question post helped me realize the context that was required, and how to phrase my preface so I would not be unfair or put my doctor on the spot, but elicit his honest opinion.

I'm certain his honest opinion is exactly what I got. And it's a clear indication from an expert that I can plan and look forward to a future.

So I'm very glad I asked.

Tina

Tina, I read your post and cried with joy. I'm excited for you. It means you can dance on my 90th. Hope and pray. Just kidding and start booking and filling your bucket list

Tina- that is such a wonderful conversation, thank you for sharing! Made my day!

Tina 2--I'm so happy for the positive outlook you got from your doctor!!

I've traveled to Orlando (last October 2012)  and to Chicago in July (2013) and had no problems (I did wear my lymphadema sleeve on the plane).

I couple months ago I had to postpone my treatment for a week due to the flu.  My onc,said--no problem!

I just had my last loading dose. The nurses were very amused at the "Fanny Pack". I'm kinda shocked they don't know about this site, as I would send every bc patient here.

Anyway, I think I had some tumor flare, as the mets in my neck were really achey. And, I'm soooooooooooo tired. Spouse and I agreed that it's better than chemo tiredness, because at least my brain is still working. Is this a normal side effect? I've looked online, and about 25% of patients seem to get lethargy and weakness.

Almost too tired to type ,

Jennifer

Hi Jennifer, I've just finished the loading doses (3 -- ever two weeks) and am grateful that it's once a month from here on out.  I've been very lucky -- whilst I have allergic reactions to the shots, I don't have any other sideeffects.  I do get more tired, but I've been chalking that up to my back operation and general malaise from the diagnosis.

Everyone experiences things differently.  I think your experience might be more normal than mine; the nurse was surprised to hear I was working full time.

P.S.  I wish my brain was working -- I have zero ability to focus and negative ability for short-term memory.

I'm glad to hear there are other members of the few-physical-symptoms but messed-up-brain club! I know it, but the people around me say they don't notice a difference.

I have gone 5 weeks 3 times. I was told by the oncologist's office that you can go as early as 3 weeks and as late as 5 weeks when special circumstances warrent.

Desi,

The bit of discomfort that I have area are at the injection site[s] and would hardly qualify as Pain with a capital P, so not much to manage. Perhaps someone else will be along to help with this question.

*susan*

Desi, in order to respond to your question, I looked up some of your previous posts. It seems as if you were having a lot of pain in your neck before having the Faslodex injections, so I don't know if they might be exacerbating it because of estrogen deprivation or not. Could be, but it's kind of early.

I have a fair amound of constant pain in my upper buttocks/very low back (!) that I grow more and more certain is caused by the Faslodex injections. I also have facet joint disease in my spine, an arthritic left hip, and hip bursitis, BUT-- because of when and where I experience the most pain-- I am now sure that my main issues with mobility and pain stem from "injection site pain," a term I never fully realized the full definition of until recently through experience!

I have tried PT and take NSAIDS when I need to, but don't want to become dependent on them. The medical people I talk with about this seems to assume that my mobility issues are from arthritis, etc., but I think they're from inflammation and scar tissue from repeated shots. I have an appointment with my rheumatologist Monday and am going to ask her if there's anything she can recommend to specifically address my pain in an area that is re-injured every month. There must be something! Therapeutic massage after each injection? Accupuncture? Breaking up the scar tissue in some way?

I wish I had some advice for you, Desi. As you see, I can't even get answers to this myself.

Tina

(((HUGS,c-k-j)))  Loving and positive thoughts back at ya! 

Tina2,  I'm with you with wondering sometimes whether back pain is or isn't from Faslodex.  This week I was told it was.  I'm on Cytoxan so that I don't have arthritis pain from Faslodex.  My arthritis and joints have always been my pain area, not cancer.  Some treatments made my arthritis flair, so a group of specialist and Oncologist took weeks to figure out how to treat.  Cytoxan stops all my arthritis pain but does not stop the pain in the bones where cancer is present, nor does it stop the Faslodex lower back pain.  I don't know if you want to add another chemo but Cytoxan keeps me driving and mobile.

Desi,  I was on Xeloda and Xgeva but the neck, jaw joint pain was so bad I couldn't pick my head up off a pillow. Now I get really bad side effects so I try not to chime in on responses because I've had 13 anaphylactic episodes from medication.  However pain can occur after cyberknife my best friend had pain for almost 3 months afterwards, nerves are affected from such also.  

I've found that I get too sick on pain meds the vomiting for days after one pill of morphine isn't worth it at times.  I have a biofeedback machine and use  Dr. Andrew Weil "Sound Body Sound Mind" cd that redirects your brain patterns.  I had my mastectomy without any drugs just doing the above.  I do though have break through pain days where I think this is it.  Then I take Compazine wait an hour Zofran then 30mg morphine.  If I don't take  pain meds when I have flair days then I have mini heart attacks where I have to take nitro and oxygen.  Pain effects the whole body and organs more than I had ever realized.

I can't exercise (Doctors orders) so now that it's summer I swim.  I'm finding that it is really helping those sore buttocks after the Faslodex injections.  I was ready to throw in the towel but with swimming I'm feeling much less back pain.  All that kicking doing laps must move the medication around.

For you ladies who have been taking these injections for years my hat goes off to you.  You are the bravest of brave.   Hope all of you are having a relaxing weekend and my thoughts and prayers go out to each and every one of you.

Hi, I was diagnosed stage 4 in January of 12, was on arimidex and zometa for 15 months. tumor markers were going up slowly . Onc changed me to Faslodex and zometa. Only had 3 times of that. 2 loading doses and 1 monthly, markers are up more now and Onc is changing to aromasin and infenerator ( not sure on spelling) So am doing a little freaking out here. Is this stuff gonna work? I only got 15 months or so out of arimidex , was so hoping for more. 

Very worried that this won't slow it down either, Sorry for whining. I am just freaking and having a few panic attacks.  Thanks for listening, Redroan

Hi Redroan, I twin Desi and ask another question.  Tumor markers are a good indicator of problems for some people, but for many others they don't mean a thing. 

Is your onc doing scans to see exactly what is happening to your mets?

I was also told that it takes several months to see if faslodex is working. 

FYI I'm told that panic attacks are perfectly normal.  The first time they tell me I have progression I'll probably pass out.  There hasn't been enough time yet to tell about me.  If you are really anxious, as your doc for some meds.