Hormonal Treatment for Stage IV
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Thank you, Mindfulness,
I haven't been able to find much info on taking 2 AI's at once. I'm trying to adjust to the New Normal of progression. And, trying not to think too much about it since I won't know anything more until July, other than the monthly tumor markers.
It sounds like we're on a similar track and were diagnosed the same year. I also have been trying to practice mindfulness. Just finished the book How to be Sick by Toni Bernhard. It has helped me so much and I intend to purchase a copy to keep handy. Have you read it?
My tumor markers have increased the past 2 months, which correlates to what has happened. They have been a good indicator so far. I had a first CTC the end of Dec. Results showed a big ZERO. After my PET my onc ordered another one. Results should be available in the next couple of days. It will be interesting to find out whether they correlate as the CA27.29 has. Have you had the CTC?
Good luck on your scans.
Lane
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I did Aromasin and Faslodex for 18 months. Got me to NED but I think it was the Faslodex not the aromasin since I was on that already when I progressed. Sadly, my markers are on the way up again so I may have made the wrong choice to leave the aromasin in November.
This is all such a crap shoot. We just make the best choices based on the information we can quantify.
*susan*
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I'm sorry, Susan.
After 3 years of NED on my first treatment, this is a big adjustment for me. If the Tamoxifen doesn't work on the new tumor, and the femara stops working on the original tumors, I guess we'll try another AI. Hate to have to wait 3 months to find out, but, on the other hand, 3 months of not knowing means 3 months trying to live in the now with maybe a few trips on D'Nile. So, in the meantime I'm enjoying an early spring in the Rockies and spending hours working in my garden. Enjoying my thousands of forget-me-nots today.
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Lane, I also read How to Be Sick by Toni Bernhard, and I have a copy now to help with reminders of how to reframe a situation or cope more effectively with the mental distress that often accompanies this journey of advanced cancer. Ms. Bernhard is challenged by Chronic Fatigue Syndrome, which I also have and which was the reason I read the book, but I think the book would be helpful for anyone who is challenged by serious illness. I'm glad that you can enjoy a lovely spring--what an image: thousands of forget-me-nots--while you are waiting to know if your treatment is working.
Susan, I'm sorry to hear about your markers escalating. I agree with you about making choices that reflect the best information that we have at the time; I try to avoid judging, in retrospect, those choices that don't work out so well for me. Right now I am on tamoxifen and trying really hard to manage a variety of side effects since I have had NED for about 2 1/2 years.0 -
I have a question for you all. I go in for round #6 on Friday... started shots the first week of January. I'm starting to notice that I feel like I'm losing my appetite. For the past several weeks I have been eating primarily because I have to, and if I'm not paying attention I wind up skipping meals. Even when I'm hungry, nothing really sounds all that great. Anyone else have this SE?
I just wish it would translate into weight loss, which so far it is NOT.
Also feeling more fatigued as the months go by, but I keep wanting to think that may be from spring allergies. The pollen is really a monster here this year!
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lulubee,
Even though I've had sporadic bouts of nausea, my healthy appetite remains pretty much unaffected, but that's just me. (I can't handle fried food anymore, but that's probably a good thing). I've seen a wide variety of SEs reported re: Faslodex in this forum. I do notice that my fatigue is increasing, but I don't know whether to blame it just on the treatments or on moving around with arthritis. In my case, I think that both are contributing factors.
When I complained that I was having trouble doing everything I used to do, my oncologist told me that Faslodex, by depriving one's body of estrogen, slows down one's metabolism. ( That might explain why you're not losing weight even though you're eating less.) Now that I know the cause, I try to push through the tiredness, but am not always successful.
Tina
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Thanks, Tina... you know, I really thought I was posting this in the Faslodex Girls forum! Woops. I'll go try again over there now!
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Hi everyone. I "heard" there was a study out combining femara with faslodex; however, I can't find it. Does anyone know where I could find this? Thanks ...
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SyrMom,
No, I haven't read about that study. Hope someone out there can give you further info!
Lane
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Lane,
I'm so sorry to hear of your progression but I wouldn't worry about having the T added into your regime as T and the AI work differently to achieve a similar reaction..........getting you back to NED!
Love n hugs. Chrissy
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Chrissy,
I'm doing okay. Three years is a good long time on one drug, I think. Hoping for very few SE's with Tamoxifen. Maybe NONE!!!! Waiting for the nurse to call me with CTC results.
So happy you're home at last and on the way to healing!
Love,
Lane
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Question for those who have taken or are taking tamoxifen. I have been taking tamoxifen since 08/09 and in the last several weeks I have developed intense itching. Actually, it's like my skin is crawling and I am itching at the same time, and it's all over my body. When I first suspected tamoxifen as a possible cause I stopped it for a number of days, then itching gradually receded then stopped. Since I had been taking tamoxifen in the a.m. and having itching that disrupted my sleep at night, I decided to start taking it in the p.m. with the hope that most of the itching would be in the daytime and I could try to cope with that. Well, the itching/crawling sensation is building again, and last night my sleep was disrupted for hours, requiring me to take ativan. I have tried benadryl, and it knocks me out for a couple of hours, then I awaken with excitability, jumpiness, inability to sleep etc. I looked into using an antihistamine, but taking fexofenadine at one half the lowest dose kept me hyper for more than 24 hours. (I realize that may be hard to believe, but trust me, I am very sensitive to meds.) Has anyone else had this type of experience, and if so, what did you do that helped?
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Brenda, I wonder if your body has started to kind of reject the Tamox, as it seems you are having an allergic reaction. I'm not on Tamox, but I noticed this month for the first time that after my Faslodex shots, my rear, where they put the shots, was itching terribly for a few days. This hasn't happened before but I've been on this medication for 10 months. I'm thinking my body may have had enough.
I'd definitley talk to your doc about it. It may be time to switch to something else. I'm not sure I'd take the Benedryl unless they say it's ok because I have read that it lessens the effects of Tamoxifen somewhat.
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I have a question for you all.
Has anyone with bone mets been on Tamoxifen that hasn't had chemo? And have you had any luck with it?
I've been on Faslodex, but I may have to change if a recent biopsy of a skin lesion comes back for cancer. My onc mentioned putting me on Tamoxifen if that's the case. I've never been on it, and wonder if it's going to be enough to hold my bone mets stable.
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Brendatrue, sounds like allergy to me also. I would definately bring up with your onc. I just started tamoxifen 3 days ago. Never had Chemo, bone only until last week when found mets in liver. Doc says still small enough to give tamoxifen a try. I don't feel like I'm getting a good sleep on these. I wake several times and wake up feeling like my sleep wasnt very deep. I upped my melatonin last night to 9 mg instead of the usual 6 but that didn't work. Gonna have to try an Ativan tonight cause I'm dragging at work.
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Glad to hear that you are being treated similarly, Frapp. Sometimes I wonder if my onc is being aggressive enough, but I know that it's more complicated than that. Just because a treatment is harder on your body doesn't mean it's necessarily harder on your cancer. I have to remember that.
Have you ever tried Ambien, Frapp? My onc gave this to me last year when I was first diagnosed with mets, and it really does help. I always get a good 6 hours and wake feeling rested when I take it. I haven't needed it for several months, but if I start on Tamox and can't sleep I'd certainly go back to it happily.
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I'm not on Tamox but I've noticed this month that my sleep pattern has definitely changed. Frapp, like you, have trouble going to sleep and then staying asleep. I don't feel rested of a morning - never get into a deep sleep. Not sure if it is the Faslodex or the Zometa or just both of them. I have wondered if that is something that happens with hormonal drugs. I haven't been on these drugs but about 6 months - just know my sleep is all messed up.
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I haven't noticed any sleep problems with Tamoxifen so far - have only been on it 2 weeks. But, occasionally I use Ambien, but only half a tablet. It works great for me. And, no hangover. I've never tried a whole tablet - haven't needed to so far.
Frapp, I'm sorry about the liver mets. I also have progression, after 3 years of NED on Femara. Now there's cancer in a lymph node in my pericardium. Guess I'll have to wait until July to find out if the Tamoxifen is working. My onc starts with the mildest drugs also, and I guess if this doesn't work, it will be on to another AI. I've known this would happen at some point, but it's still a shock. I hate to say "The suspense was killing me," LOL, but the last few months I've been expecting it. Hope you have great results on your next scans.
Lane
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Sandilee, After I was lst diagnosed as being Stage lV in 98 with mets to the bone, liver and lung, I was put on tamoxifen as treatment....I had had no chemo prior to this. I cannot recall how long I was on the tamoxifen before it stopped working, but know it was several years. And I also know it did work for me....my tumors shrunk 50% on the tamox, got rid of the tumors in my lung and kept things stable for the time I was on it (I can look it up as I do have all this written down somewhere) . After tamox, I was briefly on arimidex, but onco switched it to Aromasin since he had heard it got more dramatic resuluts and for me it did....put me in remission and got my CA 27.29 all the way down to 18. From there we went to faslodex. I think the hormonal treatments are great if they can get the results and keep you off chemo as long as possible.
Frapp, My liver mets stayed stable the entire time I was doing hormonals
LWD, Hope your results are good.
Lulubee.....I had no SEs with faslodex, not even a sore butt. Wish something would make me lose my appetite, but nothing does.....however people keep telling me that I really don't wish this.
One thing I do know is women's bodies miss estrogen when it is taken away, but considering the benefits when you have BC, the SEs are worth it...just MHO.
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Sandilee, I've had ichy reactions to Faslodex injections a number of times. The last time I noticed that the concentration of redness and puffiness was the exact shape of the band-aid used after the injection! For the past two months I've asked the nurse to use cotton and tape instead. Voila: no ichiness or swelling. I realize that this could be coincidence, but so far, so good.
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Thanks for the feedback re: intense itching with tamoxifen. I have read that one of the less common side effects is itching, so I am hopeful that it's a side effect and not an allergy. I don't have hives or any of the other signs I usually have with allergies, although that certainly does not prove that it is not an allergy! Since I could not tolerate arimidex and have been stable on tamoxifen, I hope to find out that it is a side effect and not an allergy AND that there is something I can do to manage the itching. I took benadryl only on one night, when I was desperate to sleep and the itching was driving me out of my mind, and I may just have to take ativan until I see my MO again. Sleep has become more and more critical for my well-being, but I don't do well on ambien. Interestingly I read about a study that reported most people get only about 30-45 minutes more of sleep with meds like ambien and lunesta and that the amnestic effect of these drugs keeps people from remembering their less than adequate sleep. Who knows?
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Marybe, thanks for the reasurrance about the Tamoxifen switch. If I could get "several years" I'd be really, really grateful! And it would be a lot less expensive, which is no small matter. I should hear about the biopsy results next week.
Tina- I think I may take my band-aid off as soon as I get home next time and see if it helps.
Interesting about ambian, Brendatrue. I do feel very rested after I've taken it. Maybe it's the placebo effect. In any case, if I wake up rested after six hours and don't remember lying awake trying to sleep, that' good enough for me.
I love all of the sharing on this board. Don't know what I'd do without it!
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Brendatrue, I had tamoxifen for just over 7 months and had itching of my head, face, and burning itching of my feet. Benadryl is counterindicated with tamoxifen. It makes it less effective and is a moderate inhibitor(benadryl) for tamoxifen. I am on Aromasin now just under 2 months and developed a nasty rash on my torso, it moved to my back, chest, then my extremities. It first started as an itching sensation on my head and around my mouth almost into the 5th week on it. My rash is red, raised and I have burning, tingling intense itching with a prickly sensation. I am currently on atarax for the intense itching, heavy dose of steroids 4mg 6 times a day then tapering for next week to try and suppress the rash. My new bone mets in my hip and sacrum hurt like the dickens and now I have no pain so the NP thinks the drug is working. I see a new onc tomorrow since my oncology clinic went under. (major SUCK since metastatic at the get go and been there 5 years) The pharmacists said this is one of the less common SE's of the AI's.
Wishing you well. Hugs Dawn
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Dawn- YIKES! Your experience sounds dreadful! I hope the atarax and steroids have helped tremendously, and I hope your visit to the new MO went well. I can only imagine how I would feel if I got the call that my clinic was going under and I'd have to find a new MO asap. I have terminated more than a few MO's in the past, and I have been with my current MO since 2006. His office staff drive me crazy most of the time, but overall he and I get along well. He treats me with respect and supports me in being a partner in the planning of my care.
My experience with tamoxifen starting worsening last Thursday night. I called both my pharmacist and my MO's office Friday and ultimately realized that I had to stop the Tamoxifen again. My symptoms ranged from intense, burning itching and skin crawling sensations all over to chest tightness to slight tongue swelling to intense headache to (you get the picture). MO's office was no help except to say stop the med and schedule an appt for Wednesday/9th; of course, they reminded me if my symptoms became life-threatening to go to the local ER. If I had more faith in the local ER, I would have gone Friday night or Saturday morning. I've made it through the weekend without turning into a raving lunatic but it was only because I did everything in my power to remain calm and focused on very simple tasks only. Today I am better but still not "back to baseline."
I expect I won't be able to continue with tamoxifen, which I regret because I have done well on it--relatively speaking--since 08/09. I took Arimidex in the past and will not repeat the horrible details of that experience here. My MO and I should have an interesting conversation Wednesday....
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Hi,
Has any of ladies tried Claritine in this situation???
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Brenda,
Have you tried a different brand of tamoxifen? Some women report different side effects depending on the brand. Might be worthwhile switching?
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Slousha, Hi, I am a walking antihistamine! I did benadryl, zyrtec, claritine, (not all at the same time) now a prescription drug atarax. Did you know the main ingredient in zyrtec is also the drug in atarax(converted in the liver) I could of saved some bucks here..Haha. Atarax takes the intensity down but not away. Wish there was a drug that did not have crappy SE's out there! Dawn
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I had a terrible reaction to the trial drug I was on. Raised rash with what looked like blisters and itches like there's no tomorrow. I could literally scratch myself raw. Doc has put me on atarax. Seems to help a little. Been on tamoxifen for about a week now. I was taking them at night but found it was keeping me up. I switched to mornings last Friday and it seems to have helped. I'm now starting to get hot flashes. I'm going to take this as a sign that it's going to work. just wanted to add that the atarx can be very drying.
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Ladies I am so sorry, I never dreamed you could have these side effects from some of these drugs.I didn't know either that difference in generic brands could make a difference. I hope everyone gets relief and finds something that will work for their mets and the side effects. I do know from my son having big time liver issues as a child, that they didn't want to give him drugs that had to be metabolized through the liver as they weren't sure what the side effects would be. I am not sure if any of you with the side effects have elevated liver counts.
Hoping everyone has gotten some relief -
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I talked to the pharmacist about changing manufacturer of tamoxifen (currently Teva), and she thought there might be a chance it would make a difference if I were indeed experiencing side effects rather than an allergic reaction; however, Teva has been making all the tamoxifen I have been taking for these last years, so she suspects it's the tamoxifen itself. I thought of taking an antihistamine, but I am so highly sensitive to meds that I tend to stay up for hours and hours if I take one even at half the lowest dose recommended. I was trying to endure this experience without taking too many additional meds because I was afraid of what I might be doing to my body to take more meds (although that may have been wrong-headed thinking). The liver issue is interesting, because tamoxifen may create "liver issues," and I plan to ask my MO to check my liver status on Wednesday. Interesting about atarax.... And I appreciate all the suggestions!
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