Hormonal Treatment for Stage IV
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Thanks intothewoods! Are you a Sondheim fan?
tryn2staycalm, I think you should start rattling some cages about getting treatment started. If they know that you are ER+ then I don't see why they didn't start you on something right away. The moment my biopsy result came back showing I was ER+ my MO phoned in a prescription for Tamoxifen and I started it that night.
I don't know how it is in Canada but here we all need to big active advocates of our own health. No one's really out there making sure every thing's covered for us. Especially in the early days, I made lots of phone calls and e-mails bugging people to get me squeezed in for biopsies and scans. I have incredible doctors but they are all very busy and so are their assistants. There's no one else who is going to care about my health as much as me. I keep a list of the e-mails and phone numbers of all of my doctors and their assistants and nurses. When I felt like I wasn't being heard, I'd copy a bunch of them on one e-mail. I've tried to learn who is responsive and who is not.
Be the squeaky wheel!!!
Hugs, Susan
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Susan, yes I am a huge Sondheim fan. Overall, Into the Woods is not actually my favorite but I find a lot of meaning in the lyrics. West Side Story is one of my all time favorite musicals and for 100% Sondheim it would be Company. Are you a fan?
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Tryn2 I just read all of Susan's post and she is right on. Very good advice. Thanks Susan.
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Hi All! Happy June! I have a question that is totally off topic.... How do you write the little blurb that shows up along with your profile, under your post? I've seen some very lovely quotes or sayings. And, since I am an E-tard, I can't figure it out. Thanks!
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Thank you IntotheWoods.... I had my PET Scan on Wednesday and my onc emailed that night with good news.... no progression and no new cancer. Yay! I was very relieved. Tryn2 - I agree with others that you shouldn't have to wait so long for results. Patience is not one of my virtues, but I would be tearing out my hair if I had to wait as long as you are. I thought of you when I was in that PET machine ....held out my hand and prayed for both of us! I am sure it will be fine but we will all feel better when you have your results and they have started you on a treatment plan. I agree with Susan - you really have to self advocate. Ask questions, demand answers and then get second opinions if you don't "feel" right about the first one. I learned that the hard way, but definitely doing it now. I have an appointment tomorrow and I am interested to see what my tumor markers are doing....I had that PET scan because they were elevated. Maybe I really am neurotic and all those aches and pains I was feeling were in my head!
Susan - I am sure radiation to bones is different than to eye, etc... but I agree with others that it can really take time to be effective. Both my radiation oncologist and my other oncologist told me it may take 6 mo - 1 year before I saw any reducation in the tumors/lesions, but that the radiation had in fact killed the cancer cells, and that it was just going to take a long time for the tumors to completely die off and go away. I am curious about your Zolodex injections. I hadn't heard of that.... is it similar to Lupron? I will research. I have Lupron shots every 3 mo to shut my ovaries down since I am 47 and wasn't in menopause, but I read what you said about asking about a hysterectomy. I just asked my oncologist the same thing...and have an appointment in July with an oncology OBGYN to discuss with her and hopefully have done. My understanding is that they can take out your ovaries laproscopically (I spelled that wrong) and that it's an easy procedure. I figure that since they are shutting mine down I might as well have the out; then one less medication I have to take. Also - so impressed from one mom of teenagers to another about what you hope your son learns. I have two teenage boys - 17 and 15 - and two teenage stepchildren - one boy and one girl - 18 and 15. Full house! I try to be so strong for them and keep their lives as "normal" (that word again) as possible, but at the same time I do hope they are learning something about fighting and living.
I read all of these threads every day....I don't always contribute but want you all to know that I really look forward to hearing your "voices" and words of comfort, advice and intelligence.
Hands, hugs and my heart,
Andrea
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Hello to all,
Just stopping by to wish everyone well. I'd like to add to the chorus of voices, that hormonal therapy can be started with a simple prescription sent to the pharmacy. My path to stage IV was quite unusual (hadn't even started tx for stage II ), but I popped that first Arimidex within hours of finding out about my bone met. Stand up and shout if necessary but get something going on. It will make you feel better and a bit more in control. Take care.
Caryn
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Hi girls!
Tryin2 I am amazed that you have not yet got your treatment plan!! I think I would be on that docs door step yelling my head off to get things moving.........it's not that hard to write a prescription so you can get started. All this waiting around is not going to help your psyche.......you stand up for yourself and go get 'em!!
Skylotus where you wintered all your details at the bottom there is a box where you can write little quotes etcetera and they will appear under you posts with your other details.
Andie so glad to hear that your scans came back negative....yay you!!!!. Isn't it such a great feeling to hear those words 'all clear'! Good luck with your obgyn discussions!
Love n hugs all. Chrissy
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Andrea - Yea!!!! Congrats!
Tryn2 - Nothing new to add, but I'd echo the "be your own advocate." The system in Canada may be similar to New Zealand's (free health care) and I've found I've had to rattle cages, be my own advocate, and pay for a second opinion.
Hugs to all,
Terre0 -
Andrea,
I am so so SO happy for you. What wonderful news to end my weekend with!
Tryn2, Andrea is right- we will all feel better when you have your results. We are all here with you.
For anyone like me who is heading into the work week, have a great one!
Lisa
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Andrea - So glad to hear your scan was clear! I thought of you also. I have an appointment on Thursday with my MO and I expect some answers and some meds! I thought too he would give me a script at my first appointment as he told me he would put me back on Tamoxifen or another hormone therapy but when he was leaving and I didn't have one yet I did ask him about it and he told me next appointment when he has the scan results. Still not sure why but I will not be leaving without any treatment this time!Hugs All,
Cathy
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Hi Cathy, He may have wanted scan results to see whether radiation, etc, are recommended. I've read that some doctors don't like to give Tamoxifin and radiation at the same time. Can't remember why; I had both at the same time but recently read that some docs are saying to wait until radiation is done. If he didn't have all the scan results, that's probably why and he's being conservative, which is a good thing!
Take care,
Terre
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Kiwi - Yes that does make sense. To think of it the first time around my MO (different one since moving home) made me wait till after chemo and radiation to take Tamoxifen now that you jogged my memory. Just anxious to get into treatment. Anxious about scan results too! Come on Thursday!Cathy
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I'm presently looking over Medicare Part D plans (prescription). I noticed one plan only pays for generic aromasin inhibitors while the other plan will pay for the brand names as well. My question is, does any of your MO feel the brand name Al's are a must? I will probably make my decision based on this. I'm hoping to eventually be able to return to hormonal therapy; femara was good to me for 18 months.
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I have been on generic Arimidex for almost 3 years. I belong to a totally self contained HMO and if a generic is available, that's what you get. No problems with it, nor did my mo suggest that the name brand would be better. I get my second opinions outside my HMO and they completely concurred with the AI decision.
Caryn
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I just found out from my MO office that once on chemo the MO usually does not return to aromasin inhibitors. They are going to double check. I'm bummed. That was my goal to get stable and try another one; I've only been on femara.
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Awww...sorry for the crap news SryMom. Not something I'd heard before, so will be interested in what they have as a final answer.
Hugs to you,
Terre0 -
I am a nurse practitioner who was diagnosed with stage 4 cancer in Dec 13/ I absolutely feel strongly that generic meds are not the only acceptable drugs for treating cancer. I myself had 2 months of generic Arimidex. I had all manner of GI disturbances. Then when I changed to the brand name by paying out of my own pocket I was overjoyed to find so much better metabolization by my body. I understand it is a thorny problem but I do not think generics are equal to brand name drugs. Carolyn
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Carolyn,
Correct me if I'm wrong, but my understanding is that the active ingredients in generics is the same as the name brand, but the inactive ones, such as fillers, coloring etc. are what may be different.
Thanks
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Thanks Chrissyb!
Is anyone else out there feeling like you just don't have "it" anymore? It being stamina, energy, strength. I just feel crappy all the time. It's really hard sometimes to put my "rally cap" on every day. I don't think it's mild depression. I just ache. My bones, my muscles, my joints. No appetite, nothing tastes good. Is this what Stage 4 feels like? Like crap? Is this what I have to look forward to every day? Don't get me wrong, I'm plenty grateful for all I am grateful for. It's so hard when people say, you don't look sick, you have all your hair. And I don't want to complain. Thanks all.
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Skylotus - I'm totally with you. Sick and tired of feeling sick and tired. Actually didn't feel like I needed a nap yesterday and I was overjoyed with all the energy! Not true today; just exhausted again. Like you, I'm grateful that I can still do most of what I've always done. And happy to be alive and thrilled that I'm in as good of shape as I am. But I'm hating the fatigue and aches. I could even live with the aches if I just has some of my energy back!
Don't mean to whine, I know I have it really good in so many ways and haven't faced challenges that others have or are facing. But if I don't get enough coffee, I'm just dragging myself around. And limping while I drag myself around.
Definitely don't have "it" anymore, even with a 5 shot latte.
Sorry you're dealing with this, Skylotus, but misery does indeed love company and I'm glad I'm not the only one feeling like this. I hope it's not the new normal.
Terre
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I hear you ladies! After my first dx and chemo I was left with some lung damage and I have never been "myself" since. I worked up till then, walked most days and was very active with loads of energy. After I re- cooped enough to be out of hospital and home I was short of breath and energy. I kept asking my MO if I was going to feel better. They told me I had time to improve yet. Yet it was never the same. Now I have very limited energy. I feel grateful I can do what I do but I tire SO easy. I have never been able to go back to work. Since I'm widowed I lived off pensions (reduced) and RSP's and savings. Always thinking maybe someday ... but now since stage IV I have applied for the CPP Disability. It doesn't happen with everyone but some of us are left with this extreme fatigue. I have just learned to live with my "limitations" and enjoy the daytime as evenings I'm too tired to do anything.0 -
Hi ladies, I also am struggling with tiredness. It doesn't matter how much I rest I still end up in bed by 7.30. I have tried not resting in the afternoon only to end up nodding off in the chair. Last year was a bad year health wise(not to do with breast cancer) and I just can't seem to get back up on top.
I am also new to stage iv. My oncologist took me from tamoxifen and put me on aromasin, following stage iv diagnosis. I saw my mo today and he has stopped the aromasin as my blood test showed my kidneys are not working properly, I am to come back in 4 weeks with new blood test, and my husband asked what will I take and he said probably chemo as my body doesn't like ai's.
Has anybody else had this happen? I was under the impression that as I am estrogen+ there was plenty of options available to me before chemo. I understand that I must ask more questions but am finding it difficult to speak up, as when I try to talk about it I cry.
Any thoughts?
Thanks
Jennie
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Hi all
Been around the bone mets thread since I posted here. Just wanted to say hi. I also have pain and fatigue but I find it tolerable. Not taking meds for pain still walking with cane. Accepted as new "normal".
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I've been away for a while - visiting my daughter and looking for her wedding dress. That was such fun. I'm sorry I haven't been here to offer support where needed but I know everyone here is well cared for. I do want to chime in about a couple of things:
Cathy, I will be joining the rest of the gang and sending strong positive thoughts your way for your results tomorrow. I was glad to hear you say you weren't leaving without a plan. You go girl!
Ovaries, I had my ovaries out (Oophrectomy) in order to begin Arimidex. It usually can be done laparoscopically - mine was. It was a pretty easy surgery, though nothing seems as easy as it used to be! I was glad it all was quick & smooth especially in the midst of everything else. I would say it is a good alternative to injections if you're ready.
GENERICS, there has been a loooong discussion of generics vs name-brands on the Arimidex feed. The active ingredients in generics and name-brand drugs are the same. There seem to be two major questions. The first has to do with how a pt responds to the inactive ingredients and how those ingredients interact with the active ingredients. The other concern is about the safety and controls around some of the generic manufacturers. MY OWN EXPERIENCE is that, after three-and-a-years on Arimidex I developed mets in a new area. I had already become concerned that a switch by my insurance company to generics had left me with a significant increase in some SE and some all-together new SEs. My MO expressed her own concern about generics and immediately switched me back to the name brand. I am now doing the name brand again for three months to see if that affects the recent activity. My insurance doesn't cover name-brand if generic is available (a difference of $18 vs $330!). BUT Arimidex Direct (Arimidex.com) will ship brand-name Arimidex to you with a doctor's prescription for $30!! This is a huge relief to me!
**SyrMom!! When I was diagnosed 3.5 years ago they told me that I would not be able to return to AIs after Chemo. This was difficult news for me to swallow. Recently my MO (not my original MO due to a move) told me that that used to be the standard of care. However, new research is showing that returning to AIs after a course of chemo is often possible! DO follow up with your MO and possibly a second opinion if necessary!
I missed checking in with you all while I was away but felt your hands holding mine the whole time!
Virginia (Vadre)
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Hi Auroaya!
Do u have any emotional response to antihormonals? I took Arimidex 5 years ago and was so emotionally numb. Awful...had to stop but it wasn't life and death then. Would it be ok if yuo could share with me your emotional response and joint pan issues? I,too, have a cane cuz my l1 is fractured. I would so appreciate it. I get such great strength from these boards! Love, Valerie
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Hi Valerie,
I have no emotional se's from Arimidex but I do have joint pain. It is confined mostly to my knees and one ankle and I have some pain on my feet. However, the more active I am, the better it is. After being sedentary I am really stiff but feel better very soon after moving around.
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From my own experience there seemed to be a difference when I was on Femara and now on Tamoxifen. My bloodwork shows that my estrogen levels are rising and because Tamoxifen is a partial estrogen receptor agonist, it's possible that my brain can tell the difference in estrogen levels. I feel my emotions are stronger, so yes, you could say, they felt number before. Joint pain was pretty bad with Femara and hardly noticeable on Tamoxifen. Fatigue was definitely much more of a problem with Femara, as well as hair thinning and dry mucus membranes.
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exbrnxgrl- and anyone else who is suffering from stiffness from joint pain (mine got extremely worse after chemo) I was told by another breast cancer friend that she had started on turmeric and it was recommended by a doctor. You can make a paste or for me the easy way was to buy a high strength curcumin (active ingredient in turmeric) capsule available in drug stores and health food stores. My knees are so bad I have had to have cortisone shots in them and now they are MUCH better. If you research turmeric online it will tell you that it helps with inflammation and also has known to help with some cancers.
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hi valerie thank you for responding to my post. I might not be a good one to gauge emotional response to Arimidex given that I also suffer from Bipolar (Manic-Depressive) Disorder. I can tell you that when I ran out of my bipolar medicine and was still taking Arimidex the chills and sweats were worse. As far as the pain, it's feels more like soreness and like others have said I get stiff when laying or sitting for long and when I move it feels better. I had to stop Phys. Therapy due to insurance issues but that used to help a lot. I just bought new insurance and hope to get back to P.T. I hope you feel better and may suggest to seek counselling and maybe psychiatric treatment if you feel your emotions are overwhelming you? I have read other bc friends get relief from that as having this disease does affect our outlook in life. Take care. Aurora
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Thank you friends for responding so quickly! Its almost an academic question because if thats what it take s, I will try it again! I do take an anti-depressant and have for almost thirty years but there are other meds i can take to augment them and give me a more optimistic mood. Turmeric gets many thumbs up on lots of fronts and am gonna add acupuncture. I got other alternate stuff I think I ll share on that thread. Again, thanks sooo much for being here!
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