Faslodex Girls

Tree3

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.

Tish_13

Hugs, not guilt...and a little fear is not a bad thing. Talk to to your onc, I was surprised when I was told I could skip a treatment.

Blah, It is a beautiful day and I have to go to work. I woul ratherd  play in the dirt!

Tina2

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

susan_02143

:: applauding ::

Tree3

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

pajim

Tree -- any reason you couldn't get the shots at Cape Cod Hospital?  Or some place even closer to P-town?  If you're really nervous about it.  Else call them up and tell them you feel so much better looking at the water with the gin and tonic inside you.  Please have one for me.

Tina2 -- Good for you!  Start planning now.  My list includes Russia, Australia, Egypt, Turkey, Greece, south of Italy. . .

Tina72

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

Tish_13

Tina 2

That is great news, bring on the future!

Aerial

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!

marymoir

Tina---awesome news!! Can't wait to hear more reports from your next exotic port of call!! Hope i continue to do as well as you and Susan as i have a lot of places still on my bucket list. We r planning a trip to Greece this summer. Haven't asked onc if it's OK to travel...maybe I should have bur now I'm not sure I want to as I'm not sure I'd change plans even if he said no!

blainejennifer

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

susan_02143

Jennifer,

I never had loading doses but there are months that I am bone-tired for a day or two. Sometimes even three. I never know what months that might or might not be. I always figure that my body just needs the rest and try hard to find the time to "schlump." Hope tomorrow is a more energetic one for you.

*susan*

pajim

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.

Tree3

Join the club, pajim. Some times I cry and I'm not sure what I crying about. At times I think I'm embarrassed to have admitted to a disease of which im showing no symptoms. And then I think. Oh wait a minute. I feel, really, and I don't want to use the word but I feel like I'm f'cd up. And I am. But only I know that. I'm just now admitting it.

pajim

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.

Tree3

OK, just called my onc's office and there is no problem in postponing it for one week. So, yay, I can stay at the cape for an extra week.



Yes, Pajim, I am most definitely a member of that club. And when I am in that mind set I have forgotten to count my blessings. No pain? Thank you. No progression? Thanks. If I have to have the cancer ill take it this way.

Teresa

donsuzbee

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.

S3K5

I had my last loading dose on Monday (3 June) and had some aches and pains, specially my neck!

I admire all those who can work full time (either at home or outside)! I have been in so much pain that, at present, I am not doing anything productive!! I tried Oxycodone and fentanyl patch, but I had nausea with both of them. Cyberknife radiosurgery was done 3.5 weeks ago - no relief yet.

I am curious to know how everyone is managing their pain. 

susan_02143

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*

blainejennifer

Desi,

My mets are in my neck, so I took the pain I had/have there as a sign of tumor death. I also get nauseus when I take over 10 mg. of Oxycontin. I do it anyway, and just take it with an anti-emetic, like Compazine.

I have learned to stay ahead of the pain, so I take the Oxy three times a day, whether I am in pain at the moment or not. A heating pad can be your buddy too.

Hoping your pain recedes,

Jennifer

Tina2

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

c-k-j

Good morning to all.  I haven't been on here in awhile so it is nice to see familiar names and glad to see new members have found this encouraging site.  I haven't been on here because of an active, almost nomadic lifestyle so for those who are on the monthly injection of Faslodex, we do have a joyful life between treatments!

However, I received discouraging news yesterday in that the cancer is slowly gaining ground in my lymph nodes, the origin of my metastatic cancer.  My PET scan showed that in spite of the Faslodex and Aremidex, previous affected nodes were growing slightly, but no new ones.  It means stopping the cancer is not going to be as easy as I hoped and we will have to take one more step in kicking its @#%.  He is adding Affintor to my regime and I will go back in three months for another PET scan.  

I know there have been severe pulminary/lung issues with Affintor so we will closely monitor that.  It is so ironic because I am as healthy as ever so it is very disheartening knowing I have all this "stuff" to deal with.  I thank God every day, all day, for the life He has given me and the faith that I am perfectly safe in His hands.  My husband, my family and friends are my cheer leaders and I know we will tackle this head on.

Many blessings to all of you in your activities and acomplishments.  I have appreciated this MB from the time I was told I would be going on Faslodex.  Your words and experiences have been a lifeline to me.  Sending you loving, positive thoughts.

Aerial

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

S3K5

Thanks to those of you who replied to my post. Yesterday I got the Xgeva shot and my MO prescribed "Toradol" 10 mg for pain. For the first time, my pain seems to be responding to this medicine (finally!!). I also got Zofran for nausea, in case I need to take Oxycodin. Hopefully, these medicines should help.

Tina, I know exactly how you feel!! I have those 'injection site' pain with Faslodex shots. Actually, I have two big bruise spots! I have a hot water bottle to ease the 'lumping' and the nurse suggested gently massaging the area to break-up the scar tissue. Let me know if you find any other solution for this.

Have a good weekend.

Desi.

M360

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.

Lynne

Well, I had my shots on Friday, and unfortunately, I got the "battle-ax" nurse. I call her that because she always seems to be in a bad mood and whenever I get her (she's the nurse I've had the most) I end up with the worst pain,lumps and bruising at the injection sites. I almost asked if I could have another nurse who I had barely any pain afterwards, but I didn't want to hurt her feelings. Well she was in a good mood for once (I found out later it was because she was leaving for a 3 week trip to France the next day), but I had the worst pain yet since starting these shots a year ago. It was the left side (the right side hurt but no worse than her usual). It hurt going and and got worse up till yesterday. I have a 6x3" bruise around the injection site. There is also a lump (I've had bigger lumps). Of course I sleep on my left side for the most part, and right now that is impossible (I ask them to go more towards the middle instead of near the hip, but that usually gets shot down). I can half stomach half right hip it for a little while, mostly I've been on my back (forget the stomach, never could sleep that way). Needless to say, I've slept little these past few nights. I work 35 hrs, in 4 days, weekly. Thank God I work from home. I got my 9 hrs in today, but that was with ice packs and 3 ibuprofen at a time (I can't take the Vicodin or tramadol while I work or drive, they make me too loopy!).

I am having my every 3 month scans next month, and I hope they are good still, but I am so sick of these shots. I don't mind the bloodwork and Zometa IV I get before them, it's just those darn shots (or should I say the 2-3 weeks of pain afterward)! Next month, I will make sure I ask for one of the other nurses. I will NEVER have that one again!

Thanks for letting me vent! : )

Redroan

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

S3K5

Redroan, sorry to hear about your markers.

Just out of curiousity - Isn't it too early to determine if Faslodex is working (or not working)? I was told by my oncologist that she'll monitor every 3-4 months with PET or bone scans. I have had 2 loading dose of Faslodex and one monthly (3 total).

In my case, tumor markers didn't give any relevant information - they were really low when I was first diagnosed with stage III BC with 5 positive lymph nodes; After 3 months on dose-dense chemo (TAC), they went up and stayed up for the next six months! After chemo, I had 33 sessions of radiation. At that point my doctor stopped testing my tumor markers. Now she relies on scans to measure progression.

Best of luck with your treatment - I am sure you'll respond soon to some regimen.

pajim

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. 

Tina2

Reporting in from my visit with the rheumatologist:

We talked about my injection and scar tissue theories. She said it didn't make much difference what about the injections is causing the pain; what matters is addressing and diminishing it. She didn't think therapeutic massage would help. She agreed I should try accupuncture if I so desired, but advised me that it was expensive and results are temporary. She wanted me to try tramadol. I told her I was concerned that it was too "heavy duty" and would interfere with my ability to think straight. She said it has few side effects and just makes some folks a bit dizzy. She then suggested Cymbalta or Lyrica, expressing a slight preference for the latter. I was reluctant to go on another daily medication. We ended up agreeing that I would just up my dosage of the NSAID to twice a day and the muscle relaxant to as many as three times a day, and that I would see her again in a month.

Lynn, I have to confess that while I was sorry to read you were having problems with injection pain, I was also relieved that someone else was having similar issues to mine. It seems that a lot of women here are not having these problems. Some months are worse than others, but the pain is always there and sometimes quite debilitating, particularly in the two or so weeks after the injections.

Tina