Hormonal Treatment for Stage IV
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thank you, terre. I truly needed to read that this week. I have been feeling great since my mets diagnosis in January of '13 and struggle not to ruin "good time" with fear of what is to come. Definitely not minimizing the physical component or the daunting statistics, but the mental side to a terminal diagnosis is impossible to understand until you are living it. I've been blessed to meet many women living full lives despite this diagnosis, and I hold out hope that I will continue to be able to do so for as long as possible.
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CJRT - I totally get it! I was diagnosed in Feb 13. It's a constant battle to keep the fear and darkness at bay. And to keep living life to the fullest. I'm lucky because I have such an optimistic oncologist. I also have university-level training in toxicology, so I understand a bit about how the statistics work. But I still think sometimes..."holy crap, I'm 1.5 years into this ... how much more time do I really have?" So I revert to some great advice I got and ask myself if I'm ok right now. And I am. For the most part anyway! My arthritis is awful today and we're packing to move house - not a good combo! We've gone from being very ambitious and thinking we'd move a lot of our own stuff to "throw it in a box and let them take it for us." Looking forward to being in the new place!
Hugs to you and to all,
Terre0 -
Liz my five year cancerversary with mets was back in May........when dx I was told two years. Still here, still living and loving life and doing what I love best in my life and that is being out and about with my camera in hand.
Sometimes we get caught up in the statistics of this disease and forget that we are not a statistic but a human being each with our own life to live and enjoy the best way we know how.
Love n hugs. Chrissy
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Hi everybody....I've missed all of you ..I think I have been reading this tread but not contributing. I have been incredibly stiff and sore....I can barely get out of bed in the morning because the pain is so bad I have a hard time sitting up. At age 47! I really feel like I am 90! It may be time for me to ask for a switch in AI's again.....it's just so hard to say when "enough is enough". And like I have said before, I know nobody but the wonderful women on this thread/forum understand.....I look completely normal and so I know everyone around me doesn't get it. Anyway..... thanks KiwiCat for the positive statistics. I usually try to ignore any sort of statistics but I think I will choose to believe those. My oncologist really doesn't talk to me about that....the nearest she has come is when she said that I was in a cancer marathon and that I was at about mile 4..... so I took that as a pretty good sign. The "phases" part of the discussion scares me a little; by the time I finally insisted on an MRI to find out why I was in so much pain, my bone mets were everywhere, including my liver. However, I have been "stable/NED/whatever you want to call it" for a year and a half, so maybe that is a good sign? I don't have another PET scan until November and until then, I am just going to be happy, enjoy each day, try not to dwell on it, and try to figure out what to do about this PAIN AND SORENESS!
xoxoxo
Andi
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Andi,
I am so sorry that you hurt so badly! For me the pain is aggravated by knowing that most of it is caused by the meds helping me rather than the MBC itself. I hope you find some ways to get relief and good rest. When my pain is at its worst then sleeping well is next to impossible. I now take a Zanax at night if I don't fall easily to sleep. I know it's an anxiety med but my MO and I both like it more than the sleep aids out there & melatonin gives me horrid nightmares. Anyway I found that assuring good sleep was a big part of the job. I also excepted, early on, that for me pain medications are the difference between good and bad QOL. My emotions are so linked to my pain that, once the cycle begins it's an unhappy thing. I know I'm a bit more easily tired but the SE of pain medication have not been a problem for me. I would be a miserable b*+~h without them.
Of course, everyone believes/knows that exercise helps keep pain at bay. I have yet to figure out how to make myself exercise if the pain is so bad I can't stand it. I know it's me that stops the process, but I'm all I have to deal with.
Those are my only suggestions. I will send lots of pain-free thoughts and gentle hugs your way.
Virginia
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KiwiCatMom -
I'm not worrying about the stats, per se. But I think there is one we can all agree on - the 1-2% survival rate of MBC. Like winning the lottery, or getting struck by lightening. So, when someone says the 5 yr. survival has doubled for Stage IV Breast Cancer, I'm very interested in that, and I need the source cited before I can accept the statement. It's just the way my logical brain works. That said, if MD Anderson is saying 5 yr. survival is now 40% - that's awesome. I have only recently allowed myself to start to believe that maybe, just maybe, I might be one of the exceedingly lucky people that lives 10-15 yrs. after diagnosis. But it's tough - it's already in my bones, extensively, and my lungs. It's almost been 2 yrs. for me, and though I've been stable, I can't help envisioning this huge hour glass with the sand that represents my time left on earth slipping out. It really comes into focus when I sit quietly, and can actually hear myself wheeze, and realize the wheezing is coming directly from the place in my right lung that has the largest tumor. I'm a realist.
I've read too many accounts of women on these very boards, that were doing really well, suddenly taking a drastic and sudden turn for the worse. It happens, unfortunately. What I'm trying to do now, is just live. Live without thinking every milestone is my last. Because, you're right - what a waste essentially waiting to die, and having that mar all your experiences. Harder said than done, though. At least for me. And the stats, while directionally helpful, don't address the 1 "stat" that matters - mine.
Thanks for the info! It helps this logical girl embrace the notion that maybe survival is really getting longer with this beast overall.
LL
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Ladies I have been stage 1V since September 12, 2001. Yes, I found on the day after 9/11. Thankfully I have an oncologist who didn't give me the five year statistics. He told me that we could manage this for many years. At this point I am pain free, except for the stiffness from the Aromisin, working full time and basically living my life. Of course I know that things can change at any time, but I've had mets confined to my bones for 13 years and hoping we can keep it that way for a few more. I also get Vitamin B and C infusions along with Glutathione to help the chemo do its job. There is a woman in my oncs office who was Stage1V for almost 20 years, but passed away from the results of a bad fall, not the cancer. So here's to many more years for all of us.
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Thanks for sharing your experience, Pearlady. Unfortunately, when I was diagnosed with Stage IV, mine had already spread to my lungs. I have read that once the cancer spreads to organs, the outlook is not as favorable. I think I am going to ask my Onc these questions:
1) What's the longest surviving Stage IV patient (after Stage IV DX) you've treated in the past
2) Do you have any "long term" patients currently who are Stage IV, and have been for many years
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Liz the woman in my onc's practice that I mentioned in my previous post had liver mets and survived almost 10 years once diagnosed with liver mets. I think statistics are only part of the story.
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Chrissy - well said!
Andi - I'm with you on this pain stuff. I'm sore and getting grumpy. And anxious, which always happens right before I see my MO. And of course, always anxious that it's the cancer, not the meds, making me sore. My MO is funny; when I had pain in Feb, I said I was worried, but it could be that I was just being neurotic. He said, "A neurotic American? Never!" and then he laughed at me. And it was me being neurotic - arthritis all over the place.
Virginia - I'm taking a stronger pain med at night to sleep and it's helping a bit. My kingdom for some Vicodon, which was my pain relief of choice in the US, but not available here.
Pearlady - whoo hoo! You go girl! That's just fantastic to hear.
Lizlemon - For what it's worth, my first oncologist said he'd only had one patient survive beyond five years and he thought I'd be gone in two or three years. My second one is saying 10 is definitely do-able. He has 12 and 14 year survivors he works with. I met a woman with brain, liver, lung, and bone mets who's still going strong after 8 years. When I was diagnosed, I got my affairs in order, and then decided to focus on living. Easier said than done, I know.
Hugs to all,
Terre
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Terre so glad you switched oncologists. If your previous onc didn't have any experience with long term Stage 1V survivers, then he's not the onc for you. There are other women in my onc's practice that have survived with Stage 1V for much longer than 5 years. There was a young Dr. my onc treated who was Stage 1V for 10 years with liver and brain mets. She lived a full life and practiced until almost the end. She was given a prognosis of one year by another onc.
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Thanks so much for the encouragement, Pearlady! I know there are a lot of survivors and good news stories out there. I've met some of them and it's heartwarming. And they have mets to lungs, liver, brain, and are still going strong.
My former oncologist's philosophy of no scans, no blood tests, nothing until "you have pain that lasts more than 3 months and wakes you up and then we'll change to another AI" (with no scans!) made me feel like I'd been given up on. Lucky for me, I was referred to another MO by the local cancer nurse (who is a rock star in my book). My new one said he'd take me on provided that I send a Christmas card to the first one every year and say "Still here!"
When I told the new MO about the former one's philosophy regarding treatment and then told him that the former one said his patients don't live longer than five years, the new one said, "with treatment like that, it's no wonder!" Note that the first one was a radiation oncologist who also decided I didn't need an MO. I intend to be around for a long while - recently bought a car with a five year loan.
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Good for you Terre. You are so right. With the treatment he was providing and with an attitude that no one lives for more than five years, no wonder no one in his practice does. It's really shows that as a patient you have to be your own best advocate. Enjoy your new car for the next five years and the one after that.
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I think it also depends on "when" the stage 4 was diagnosed. Meaning, was it discovered sooner rather than later? I was diagnosed stage 4 last summer, or 1 year ago. But....who knows how long before that I was already stage 4, I just didn't know? Because I was 15 years out from a stage IIB diagnosis, I thought this trickster (cancer) was an old story. I guess what I'm trying to say is, in the grand scheme of things, numbers don't matter, days do. One at a time.
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Well said, Skylotus!
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Well said Terre! I don't want to lose one day of life's pleasures worrying about how long I have. None of us know the answer to that! My late husband dropped dead instantly at age 52 after never being sick a day (heart). I'm here now, I'm feeling well for the most part and I will do whatever I can to keep it that way!Cathy
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Cathy - absolutely! So sorry for the loss of your husband; very sad. It's so hard to lose someone. It was harder for me when my mom had cancer than it's been for me having cancer. She was told she likely had 2 years; she had 12 weeks. Another guy I know was diagnosed same time and same cancer as mom; he lasted six years. So you just don't know and it's not really worth speculating on I reckon, as I have a lot of living to do regardless of how much time I have left.
I live in Wellington, which has a horrible jay-walking problem, combined with people wearing headphones and electric buses. We've had a lot of people hit (and sadly, killed) by buses in the city. So, when people ask me how long I have, I tell them I don't know, after all, I work in Wellington and could be hit by a bus any day.
Hugs to all,
Terre
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Hello, i am new to this thread. But reading it gave me hope. I too, believe we are not just a stat. I was dxd of reoccurrence December 2013 while on femara. I had no symptoms , no pains except for the bone pain, joints among others. My liver mets were found by mistake 10 of them but no bone mets, which was suspected along. My MO refuses to talk about time, as he also refused the suggestion of a second opinion to start me on A/A combo. I got a treatment of combo chemo for four month , carbo+gemzar. After Chemo the PETrevealed decrease in tumor size and they became 7 , but the cancer was still active. Until now my MO is refusing to give any info. I am now on aromasin awaitng my PET. In september. I have ILC and unfortunately not a lot of ladies have this. So i actually don't knowif i am stable or not . I live my days doing what i do normally, arthritis and calcification .
Son i want to tell all of you thank you for this thread and god bless tyou all. Hugs to all.
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Dear Woodylb,
In your response is a whiff of your doctor showing disdain for your questions....Your MO refuses to talk about time....Oh pull ease...Are you retarded and unable to understand of course not...He is of the old school. Dump him and get someone who answers every question...You should have peace and understanding and some hope from your provider....At least you are worthy to ask questions about your body....Your insurance pays him money..Do not let him put you in the quiet room. Come screaming out and get every question answered. Sorry I believe in this ...Carolyn from Music City
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Woodylb - Welcome and glad this thread gives you more hope. We need that! I've heard of so many stories of the doctors giving someone such and such time and them being way off. I think that is why they don't want to say because they don't really know! My MO told me he can't give me a prognosis as it all depends on how I respond to the drugs. As one oncologist said from same cancer center I go to "show me a hundred ladies with bc and I will show you a hundred different cancers". Finding the right treatment is essential. I am doing a drug trial now with does include Letrozole (Femara) and the trial drug Palbociclib (or 33% randomized get placebo rather than Palbociclib). I am hearing great things about Palbociclib and there is great hope that is the drug we all have been waiting for to treat late stage bc. So keep your hope and find that right drug for you. I will know in mid Sept if its working for me after next set of scans but I think I am feeling better and breathing some better (lung mets).Cathy
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Dear Carolyn,
My MO is really nice and he was very upset and i got dxd again with liver mets , he told me they knew it would be back but not before 5 years, they were surprised it came back before. I had and extensive lymph nodes involvement and it was vascular from the beginning . He told me ot is not curable but that it could be confined. After my third cycle he told me he was satisfied from the results. As i am ILC eith low mitotic rate the response to chemo is never very high it is about 20 to 30%. When i finished my treatment he put me on aromasin and told me he wants me to rest from very meds for a while as long as my cancer does not go crazy. He said from the beginning that no body knows really, he told me some people live woth bc4 for a long time and some don't and he was very encouraging as he hoped mine will go to sleep for a long time. I had my PET scan back in june and it showed good improvment but still some activity in SUV 6.7 on the largest tumor. As aromasin takes a while to work and since i saw also other onc ( i live in saudi arabia where my husband works) and now i am back in my country to help my son settle for college . The oncologists here wanted me to start on the new trials meds but my MO thinks it is too early and that they will run me down, as i have still no symptoms, no high markes and my liver function is still normal. So now we decided i will have another scan in sept. And if it is still the same or it shrunk than i will continue on aromasin and if there is progression than he will discuss with me another option. ILC never goes NED it can be stable though. I pray and hope for the best. I want to thank you for your reply and i believe the same as you do but i also believe doctors don't really know as each person's cancer behave differently. It is not a good diagnosis or prognosis since it is a vital organ, if the can contain it in the liver than i will be thanful. I live on faith alone and hope for the best.
Thank you so much for your kind support. I will of course how i am doing on aromasin.
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Dear Cathy,
Thank you so much for the boost you gave me, and i agree with you that i should find the right med which works for me and i believe that my MO is doing the same. I also believe he also have a map as to what meds to use next if aromasin fails. The doctors in my country believe that aromasin will fail since femara did and he said so infront of my son and it upset so much that i stopped seeing him. I thought he was rude and inhuman. Even though he may be right i don't consider femara as a total failure since it succeded in holding the disease at bay for three years. He is not also totally wrong in thinking that aromasin will fail , but he also knows that i may respond to it. He just was extremely insensitive about it. He is a very well known oncologist and he came recommended from sloan kettering New york. Still i didn't like the way he spoke to me as if i was already dead or a hopeless case. I a, now seeing a very nice lady onc and she is cooperating with my treating MO and following me while i am here.
I know a lot of ladies live with stage four for years the only problem i don't know too many with ILC one of my two treating oncologist believes i will be around for at least 5 years, let's hope he is right and that i will enjoy my son being accepted for medical school.
))) hopefully. I believe in God and in Jesus our lord without offending anyone and for the past years i have survived on faith alone and i am living my life to the fullest ad much as it is possible , i am staying strong for my family and myself and i will never sit and wait to die. When the time comes i am sure i will know as i will know when it is enough. But i found this thread thinking the way i think and i love it and appreciate all of you ladies with your lovely spirit and spunk for life.
Love to you all you are all wonderful .
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Dear Woodylb,
thank you for your very articulate explanation of your MO and his methodology...I am so happy you are so well informed and comfortable with your "plan of treatment". Keep us informed of your progress. Carolyn from Music City
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Woodlb - Your so welcome and your right, there are many very wonderful supportive ladies here! We are rooting for you and return your love and hugs. Yes keep us informed and we will learn from each other and for sure lean on each other.Cathy
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I know Cathy , there are really great ladies here, so strong and beautiful souls. I have found so much support here over the years much more than a hospital full of doctors. You are welcome to lean on me anytime too. I am sure we will learn a lot of each others as we hold each others hands with every step we take. May the Lord be with us , and guide us along the way. I will keep you informed of course as i will be informed about you.
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Virgina - thank you for all your understanding and suggestions. I actually do take an anti anxiety at night - Adavan - and it is a huge help. I almost always get a good night sleep, which for me is HUGE. And, I have found that on the few nights I fall asleep without it, I am actually anxious the next day (go figure) so I know I am probably addicted, but it helps me through night AND day way more than any of my other medications. I know I am grumpy right now....someone else on another thread talked about having "self compassion" for yourself instead of "self pity" which is what I seem to have this month, so I am going to try to change my attitude. I do try to exercise, but I so want to get back to doing the things I used to and it's so hard with this new body of mine! By the way, I saw a picture of your house on another thread and your view is beautiful.....how nice that you can look out and see the water....so calming! I am hoping that in a few years when our kids have all gone off to college, my husband and and I can move your direction - VA, SC, NC, and find something on the water like that. It's a good goal to have, right?
Kiwi - I'll be thinking about you this week....don't you have your appointment with your onc? We moved about six weeks ago.....and it was when I had a broken pelvis.... so I feel your pain, too! I was limping around packing boxes, and then around the new house directing the movers where to go and by the end of the day I was DYING....I was so sore. Anyway - I think you and I had the "neurotic" conversation last spring when I was having a melt down and was sure that my cancer was progressing....please keep us posted and I will be praying that that is exactly what you are being - neurotic! I do hope your back pain gets better, one way or another.
XO
Andi
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Carolyn, thank you for your wishes, as for my articulate explanation ohhhh my god lolllll, i re-read what wrote and it is full of mistakes heheheh sorry it is my chemo brain and my sleepless nights which make my brain runs faster than my fingers
)) and thank you for gracefully ignoring that. Of course i will keep everyone informed specially if it can help others. 0 -
Thanks Andi! OMG - moving with a broken pelvis???!?!?!? Unreal! I'll stop whining.
Well, almost stop. We have no hot water, and it's making me a bit crazy. I've ripped into the water heater and no joy. Had to lie on the floor to see what was going on with the thermostat. That wasn't pretty. However, I did figure out why the cats are so fascinated with it though - mouse poo and pee all around it. Ick! I think I'm probably just going to get an appointment for another scan tomorrow. I don't know that my tumour markers show anything, he said they've been identical every time he's seen me for the past year. So we'll see what they look like tomorrow.
Woody - no worries about typos! They don't count here. I will (hopefully) give you a giggle though... we got a resume from a computer hardware guy years ago who had "10 years experience as a hard dick specialist" (instead of hard disk). So I reckon that any typo that's less obnoxious than that one doesn't matter.
Thanks for sharing your info with us.Hugs to all and thanks again for the kind words, Andi!
Terre
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Andi- so nice to see U .. haven't seen a post in awhile. Hope all is going well with you!Cathy
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Hi girls! Haven't posted for a while, been fighting a darn chest infection that didn't want to quit my lungs.......lol. I think I have finally evicted the bug although I am still getting short of breath and a cough so I think I just might be asking some further questions of my doc next time I see him in a couple of weeks........other than that, I'm doing just fine.
Woody a warm welcome to you and don't worry about the type 'o's'........you should see mine before I proof read! Not what you see on your screen I can guarantee that......lol.
Kiwi, a cat will always let you know if there are mice around as they will sit in the same spot just watching for hours! Hope you can get your hot water sorted, it's not really the weather for cold showers....BRRRRR!!!!
I got myself a new camera and braved the cold to go take some snaps.......thought I'd share this one in the hope it adds a little calm to your day.
Love n hugs all! Chrissy
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