Hormonal Treatment for Stage IV
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Virginia - That is great! Just wondering if you spoke to your insurance co. and asked if you could pay the difference for brand name if they paid the generic price explaining what you just told us? Depends on what kind of a human you get on the phone I suppose. Just a thought. Anyways good luck!Cathy
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Cathy, You are SO right, it does depend on which human you get o n the phone. My Pharmacist did the initial negotiating with the Insurance company (which has been very responsive since my diagnosis with one or two exceptions). When the Pharmacist had no luck I made a phone call. I spoke with a very nice woman who was sympathetic while explaining the process to appeal/negotiate my cost. She seemed optimistic that I might be able to get some relief. At the same time, listening to the process made me tired and frustrated. I heard a tip somewhere on BCO about going directly to the manufacturer and decided to try. It was SO easy that there was no question in my mind which way to go. It is entirely possible that my Insurance Company might have come through but why bother?
I sometimes feel like yelling "I'm Stage IV for pity sake! Do you really need to question what & when & how much? Can't you just flag my file 'terminal' and leave me alone?!" As I've said though, I have been very fortunate when it comes to coverage. I can't complain, particularly when I hear some of the stories of people here. Sometimes I just cry at what people go through. That's mostly why I posted this! If I can help someone get the med they need for a more affordable cost that's great! I'm sure AstraZeneka has their reasons for doing this, but why ever they do it, I appreciate it!
Happy Monday.
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Just wanted to say hi to everbody! I miss my circle of friends and think of you all often....hope everyone is doing well!
xoxo
Andi
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Hi Andi, lovely to hear from you!!! So glad you popped in.......how are you doing? Well I hope.
Take care and do pop in again soon.
Love n hugs. Chrissy
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Hi Andi! Virginia - good on you for posting!
I'm sure most of you know about these, but thought I'd post nonetheless:
http://www.fool.com/investing/general/2014/06/28/3...
What's funny is that I probably tend to get more info on BC drugs from Motley Fool (a financial site) than I do from the regular news.
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Hi Andie
- nice to cya back here!Cathy
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Andi - sorry I keep adding the e on the end of your name... I have a friend Andie .. and hard to break old habits!
Cathy
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Very interesting Kiwi, thanks for posting.
Love n hugs. Chrissy
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I'm new to this thread but an old timer with breast cancer. Started in 1996 stage I. Radiation and lumpectomy. Then on Tamoxifen 5 years. Recurrence stage three same breast same place same cancer. Chemo then Arimedex for seven years until 2012. I chose to stop arimedex due to some SEs and the advice of my dr. Now I'm on battle three. Dx May 2013 stage IV mets to bone, lungs, liver. Now on Faslodex and xgeva. Pets have been showing signs of control until this last one on June 25th. The bone mets show increase in SUV for example 2.7 to 3.4, 6.3 to 6.4, 7.8 to 10.2. Lung mets 8.7 to 9.6 and 6.1 to 7.4. Liver mets have reduced some. Is the hormonal therapy faslodex still working? I have no idea what changes are/aren't significant. I never would have stopped arimedex knowing what I know now. Are my petscan changes concerning?
I appreciate this forum and turn to it for advice and support.
Thank you all.
Dee
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Hi Dee,
So sorry that you had this progression. Have you spoken with your mo about your scan and the changes? I think he/she would be the best to help you understand what the mean. I too stopped Arimidex recently because the se's had worsened after 2 1/2 years, but I immediately started on Femara. Please don't blame yourself in any way. You did what you thought best at the time and your mo agreed . Look forward now and focus on what can be done, thinking of you care.
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Hi Dee and welcome.....wow you are an old hand at dealing with BC! Sorry you have had this latest progressing to stage IV but you have joined some good company. Don't beat yourself up over stopping the Arimidex when you did, as is said, hind sight is always twenty, twenty.......the best thing is to forget it and not look back as you are not going that way.
I'm not sure what your numbers mean as I'm not familiar with PETs so I would be having a conversation with your onc to clarify the meaning. I know not being able to understand these things can be really worrying but I wouldn't worry unless my onc told me it was not good and then I'd just get my fighting gloves on and head into what ever treatment was suggested.
Good luck with it all and once again welcome to a great group!
Love n hugs. Chrissy
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thanks so much for your reply. It helps to talk to those of us fighting the fight. Thanks for the advice. See my onc in two days will update with the plan. Again thanks.
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Thanks Dee hope the visit is all good.
Love n hugs. Chrissy
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saw my Onc yesterday. I'm now off the faslodex and on aromasin and afinitor. My cancer appears to have gotten more aggressive. My Onc told me my chance of ever achieving NED is almost NIL. Now on to the next battle. By the way SUV have no correlation to tumor size. You could have a small tumor and a high SUV or a large tumor and a low SUV. Right now feeling like the wind has been knocked out of me. Was hoping Faslodex would last longer. Has anyone been in the drugs Aromasis and Infinitor and what could I expect?
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Hi Eamesd, although I'm not on Aromasin I am on Femara, another of the AI's. The main Se from the AI's is hot flashes, muscle and bone aches.......some have these to excess while others including me have very little. The main one for me was the hot flashes but they have (hopefully) now disappeared but I have been on Femara for almost three and a half years. I've not taken Afinitor but I suggest you check out the thread that deals with it here. Just do a search using Afinitor as your main subject.
Never say never and don't let your onc say it either.........every day I see and hear of people who are in a bad way not only getting to meet NED but they have him hang around for quite some time.
Good luck with it all and I do hope that the Aromasin/Afinitor combination does really good things for you.
Love n hugs. Chrissy
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Hi Eamsesd. Sorry about your progression. Come on over to the Afinitor/Aromasin 2013 thread. This combo wasn't nearly as easy as the Faslodex/Femara for me, but it is working well for many. I am having a scan this week to see if it's working for me. I hope it's easy on you!
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Hi , I was switched from Femara (18 months on ) then progression so last Aug . started A/A.. I was so afraid cause everyone having big side effects. I did not get mouth sores just a couple chanker sores on lip they gave me 2 pills and quickly left. I lost weight like 3 lbs a week while eating whatever i wanted as of scan in april I had progression and a nodule on my lung which they are saying was the Affinator. I also developed some stomach issues etc . I had gotten to the point food tasted like crap..... but the a/a didnt give me sore muscles and bone like the femara etc so was not bad until the very end when my body had enough.
I am so sorry you have progression and do not be afraid and do not give up there are meds right now ready for fda approval BEST OF LUCK TO YOU.
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thanks all. Still trying to get used to the idea. Romansma was going to text you and ask about your experience on A/A. With the food tasting like crap how do you keep up your appetite. Ill see you on the AA thread. I hope you are doing ok Rosie06ct. Chrissy Ill check out the thread on Afinitor.
Keep on fighting.
Dee
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Eamesd,
It makes me really mad that your Onc told you that your chances of being NED are next to nil. Why say that? In any case, I was told that there was less than a 1% chance that I could go from Stage 0 to Stage 4 but here I am. You can be a statistical outlier either way and I'm sending positive vibes your way hoping you will be a positive outlier!
Hugs, Susan
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Eamsesd, the food taste thing comes and goes and it mostly happened in the beginning. Mout sores can be an issue about a month in. I had an awful bout in my throat when I started, but nothing since. Not sure coating the pill with anything helps. I've done both ways and really didn't notice a difference. No issues with mouth sores since, but increasing water retention and swelling throughout my body, as well as high blood pressure. I went off about 10 days ago and the water and swelling is going down considerably, as well as the blood pressure, so I know it was the AA combo. I've heard great things about it working. I am unsure right now, I have a PET scan tomorrow to see how it's working.
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Eamsesd, So sorry to hear about your progression. I agreed with the "don't believe 0% chance of NED" - I've been told by one onc that I had less than 5 years and by another that I likely have 15 years or more. So, as my husband tells me constantly - don't believe the statistics and the nay sayers.
Is anyone else getting cancer sores from Femara? I've had quite a few lately and didn't put it together with Femara until I read the above. I know everyone's different, etc....
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Kiwi do you mean mouth sores? I find I get a mouth full when my body is under stress but have never linked them to Femara but I guess it is possible.
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Chrissy, I guess probably mouth sores. In the US they're called canker sores (as opposed to cold sores). I haven't had them in years but have had a raft of them lately. They can be caused by stress, acidic foods, etc. But I'm less stressed than I've been it the past and avoid acidic foods, so not sure what's causing them lately.
My big issue the past week or two is my hands and wrists which are beyond sore, mostly in the joints. Oh well! Onward and upward!
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Kiwi, when I said stress I meant the body is stressing in some way........mine at the moment is healing from total knee replacement and yours sounds like the pain you are feeling from your wrists is what is causing your body stress and your mouth issues. I know how they feel.....sore to the extreme. I just keep my mouth super clean by rinsing with bi carb and salt and painting the individual sores with a tincture from the pharmacy called SM33. I don't know if it's available over there but it works to stop the pain as it contains a local anesthetic.......sting like a biotch when painting it on but very quickly makes them numb.
Hoping you feel better soon.
Love n hugs. Chrissy
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Thanks, Chrissy. Sorry to have misinterpreted! I do the bicarb and salt thing because of the ONJ and have a topical numbing mouthwash I can paint on. They're not that sore, just odd!
I've had several high pain days of late; more frequent than usual, so that's probably part of the issue.
Hugs,
Terre
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I've been on Femara since May 1, 2013 with a shot of Xgeva once month. With the exception of a few hot flashes, my side effects have been minimal. At my last check up my markers went up slightly and I need to have another bone scan to see what's happening. If there is a progression, my doctor said he would switch me to an injection once a month. Does anyone know what is the average time before Femara stops working?
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Highhopes there is no average time for Femara to work as we are all different. Some get only a few months and others get years. there are other reasons why makers go up for example if you have an infection somewhere or inflammation. Markers are pretty fickle things sometimes.
I do hope that your scan shows good news and not bad.
Love n hugs. Chrissy
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Chrissy, Thank you for the info. Too bad, we are all in this boat but we're still sailing along. Everything seems to be okay - except I do have a cough and some congestion. I've been attributing it to the warm weather but maybe I'm developing an allergy. Will have to wait and see. Thanks for the good wishes, will let you posted.
Hugs - Highhopes
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Hi Ladies!!!! Took a week and a half to go to NC to see my daughters wedding! Wheel chairs, canes and 2000 miles round trip later...here I am!!!!!! I could NOT miss it...would have broken my heart.
Now I am Zometa, femara and faslodex and there are days when I am pain free but I won't know how well it is really working till September as my bones that fractured should be healed by then. I am also using TFT (Thought Field Therapy) which is a form of acupressure that has proven results with pain and even remission. If any one wants information, just let me know. It was devised by Roger Calllahan if you want to google it.
Anyway, for laughter therapy, I am off to see "Tammy". I hope you all have a wonderful day!
I am not on a trial Cathy because I take Celexa which excluded me and I was too scared to go off an antidepressant because of the depression i have typically experienced on antihormonals but so far no SEs! YAY! How is your trial going?
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I origninally was put on Faslodex and Zometa 2 yrs ago when the cancer came back after 7 yrs. It shrunk the tumors in my lungs and lymph nodes (and kept the tumors in my spine at bay) till they eventually disappeared after 6 months. In Jan, I had another compression fracture in my spine, it was breast cancer that came back. I had scans and there were nodules in my left lung (some in the same spot as originally, some new ones) and also two new mets on my liver. They switched me to Femara and kept me on the Zometa. It's been 3 months since I started the Femara. I am having my scans next week and am hoping the Femara is working and I don't have more mets anywhere! Wish me luck!
This is my second round with Femara. I was put on it 9 yrs ago when I was originally diagnosed stage 1. Back then it gave me pain in my feet as well as joint pain as well as hot flashes. This time the it's the hot flashes (which I've been on Gabapentin for since the first time around) and I'm recently having severe dryness in my feet and hands (my fingers have small cuts on them too) which I've been greasing up a few times a day. It helps, but it is not going away. Not sure if it's this medication or metaformin which I was put on at the same time. I've also been losing a few pounds each month (not a bad thing for me!) and just don't feel like eating sometimes. Again, not sure which med is doing this.
Good luck everyone!
Lynne
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