TRIPLE POSITIVE GROUP
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HapB, just hang in there, cold showers suck, I remember visiting my parents in 90-ies with my eldest being small, no warm water for the whole summer, the municipality just turned it off, they were saving money, and it took a while until the water heaters emerged in the stores. I just warmed tons of water to full the tub for my daughter’s baths. Saturday is almost here.
KimCee, Taxol is manageble for most of us, the effect is cumulative though and the last three weeks I have been sleeping through the days 3-4. It is just as they describe the fatigue, you sleep through the night, you wake up and in an hour you feel like you did not sleep at all. Today I crushed right after 11AM, after my counsellor called and said I missed an appointment, and I slept until 3PM despite some road or construction work going on outside our appartment building. They were tearing the pavement or at least how it sounded, but I still slept. It was the same yesterday, I slept in the middle of the day, but I atributed it to my bad sleep that night due to cortisone. I believe I will sleep through the tomorrow as well. Are you sure you want to work through all chemo? I am working 25% from home but some days like this I cannot do much and then I work longer on the good days.
My hair starts growing back and I only have one infusion left but I still do not know what to do with my treatment. I had this phone call with our national bc committee chairman yesterday, he is the highest in the ranking in the country, my oncologist knows him well and wanted him to talk to me. He thinks I can take EC even though the standard treatment for me is weekly Taxol, but LVI and high Ki67 can be the reason to add an anthracycline. He said not to worry about the heart damage and neutropenic fever, not after three infusions and EC is not exactly AC but there is a slight risk of developing leukemia. And he said that I was the most difficult kind, the one who has too much information but still not being able to process it or understand in the right way because first I was a patient, emotionally affected and scared, and second I am still not a doctor and cannot understand how it works. He was very nice actually, I got another week to think and he will call me next Tuesday. And they will order a bone scan because I was complaining about my back, I am so scared I turned to pills yesterday. I wish to be over with chemo but I feel like I need to say to myself that I have done everything I could. It would mean chemo for additional nine weeks and the hair that has grown, this little fluff will be gone again.
Have all you done scans? They did no scans on me and my back started hurting two weeks after my diagnosis. Everybody kept telling me it was muscular, BS, GP, MO, two different PTs, but it still hurts even if I am doing exercises on foam roller and going to PT every week. X-ray was clean in August, but it has not the same sensitivity as a bone scan. My cancer rehab PT said it was due to my anxiety but I have been on the antidepressive for over a month now. Anyone who had similar problem and it turned out nothing? I think I already asked this. All this stuff is just so lifewrecking.
Have you noticed that it has been a while since SpecialK posted? She must be taking a time-out. Cherry
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I get my port on Friday. Why did they place yours so high?
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I Survived the fill...lol. It was not bad at all. I did not feel the butterfly needle stick at all since I am still numb, she filled 90 cc in each side. Felt fine. Probably because it has been five weeks since surgery and I'm healed up pretty well.
I agree with you all regarding chemo being cumulative - I wouldn't work if I didn't have to, but I am a one girl show here and need to pay my bills and have my health insurance. So back to work in three weeks for me. Cherry, tough decision on the EC for sure.
TreysRib, not sure if you are asking me about the port? But if so, it was placed in the jugular because the surgeon couldn't get a clear view of the superior vena cava so in the neck it is - yuck.
Vicky - oh no....can't believe your nose is still dripping
The outside of your poor nose has to be sore...I pray it stops soon. -
I got my port in the summer. My surgeon told me to put on a swimsuit and tan under the strap. That is where he put my port. The scar will never be seen unless I go topless! And considering how good my new boobs look that might be an alternative. LOL
Vicky
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LOL Vicky....nudist camp for you??? I hope my boobs turn out as good as yours
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HapB, no matter what your MO says, there are differences in the generics that different manufactures produce. That's why some people can't do the generics or do better on one than another. (I was on a seizure medication and my doctor absolutely refused to consider generics because he didn't trust what was in them. Fortunately, I take a different (and generic) one now). If you look at all the ingredients, you will see it. Different people react differently to them (often called "fillers") although Teva seems to get the best reviews from people on the AI thread. I get mine from Walgreens. As triple positive, you will get oral medication to surpress the estrogen hormones. The herceptin is for the HER2.
No, I have had no heart problems. Echos are a precaution to make certain there are none over the year of treatment. Did you have one? If not, how do they know you have decreased function? I admit I don't know what the protocol is when heart issues occur, i.e., whether the dosage is decreased, stopped for a period etc. Maybe someone else will.
Just had a Facebook post from AARP about drug plans. You might want to check it out. While we "shop" drug plans periodically, it's been the best of us - and between us, we take a lot of pills!
I love the MO who told CoachVicky to get a tan line and port placement would be done there. I'm not aware of my port generally but had a scoped-necked top on the other day and it definitely caught my attention in a photo that was taken of me. Oh, vanity!
HapB, do you have electricity yet? My daughter in Freeport, ME doesn't. Lives in the country and uses propane and a well so things are getting really difficult for her and her two cats. She hopes for power by Friday. She's already asked Santa for a generator!
Happy November everyone! My first anniversary of diagnosis is fast approaching.
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HapB A friend of mine who also has cancer (not BC) could not afford her meds either, she contacted the drug company and they worked it out so that she could get it at a reduced price. The price went from a very high price down to a reasonable copay. She was on Medicare as well.
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HapB. If you can get a reduced price through the drug company I would try. To me, if you had a coupon you would use it, no difference in asking for a reduced price. You may be able to afford it on paper but, why pay more if you don't have to. I am not saying to be dishonest but there's a 50/50 that they may offer you a discount or even send you manufacturer coupons to help you with the cost.
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ugh. A blood clot may be in my arm. I will have an ultrasound tomorrow. My infection is back. More antibiotics. This triple positive stuff is wearing me down.
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HapB, how close to the end of your Herceptin treatments are you? My heart issues showed up at 10 months. With the onc permission I opted to not do the heart drugs since the damage almost always subsides when the Herceptin is stopped. I did not complete the last 2 months of treatment because it could have caused permanent heartdamage. Three months later my numbers were back to normal. If I hadn't been so close to the end of treatment I might have made a different decision. I kind of see medical treatments as an inexact science. You take the info you have and try to make the best decision you can for long term quality of life. Good luck & I hope warm showers are in sight!
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Suburbs, so sorry to hear that, hope it will resolve quickly, I agree with you, it is always something.
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Suburbs ... hope you are well soon!
KimCee, The nose is OK. I am use to it. I will share that this nipple reconstruction was FAR MORE complicated than I thought. I got 1/2 my stitches out yesterday from surgery on 19 October. I will have these remaining ones for another 2 weeks. It is OK. I finally get it that my PS is making a body part and that takes time. Still on lifting and weight restrictions.
TreysRib ... Hope the port location works for you. Remember it is YOUR body. You decide.
Hap ... You MO is nuts if he/she thinks there in no difference in the 17 something manufactures of Arimidex. Sorry if that is too judgemental. I first started on the generic GSMS (or something like that). When I could not tolerate it, I call my mail order pharmacy and a pharmacist changed me to TEVA. When I could not tolerate TEVA, my MO sent my mail order pharmacy justification for the brand name Arimidex. I was given a lifetime override for the brand name only. It was hell from April thru August while I dealt with the generics. I kept an Excel Spreadsheet of my side effects to give my MO what he needed for the override.
Today, I have an occasional hot flash, I have stiffness in my hands, my feet and hands swell. I am usually cold natured so the hot flashes are A-OK! I had trigger fingers before this started. My Orthopedic Surgeon will give me a couple of steroid shots in the affected fingers next week. That will hold me until I want a permanent fix thru surgery. (I have limited my surgeries these days to just my new boobs!) I take a low dose diuretic and potassium for the swelling.
The primary reason women do not complete all treatments are the side effects. I am determined to complete these five years and to do so my MO was willing to keep trying different brands until we found a fix. I understand that he had to "try" me on a couple of manufactures before he could justify the brand name.
As for the price, TEVA was actually more than the brand name with my insurance. You can get Arimidex for $1.00 a day direct from the manufacture. You don't have to go thru your doctor. Just go to the website.
There is also a forum on BCO for women who are doing well on estrogen blockers. I got a lot of information from that forum.
I hope this is helpful.
I am going on a mini vacation with my husband for a few days. May not be posting for a few days.
Vicky
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Hapb, so sorry to hear about your troubles! You have really been through so much. Hope your MO finds a good solution to all your SEs. Glad to hear your power is back on.
Suburbs, sorry to hear about your infection. Hang in there and feel better soon.
kimcee - glad to hear your fill went well. You're a tough cookie.
Vicky enjoy your mini vacation, you so deserve it
As for me, I'm traveling every week and my job is wearing me down. Will be working 15+ hours today and again tomorrow. Worried about what this is doing to me on the inside. I meditate often and that helps. Staying positive and focused on retiring in 21 weeks!
Praying for you all daily....stay strong my cancer warrior sisters!
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HapB,
I don't know the woman who started this forum. I do know I reread her words often. Here is what inspires me that she wrote (I pasted the ones that keep me focused):
Sep 2010 Posts: 2,601
TonLee wrote:
"Two years I've been on this board.
I've read several accounts of women who struggle with a desire to be polite vs speaking up about incompetent medical care, poor bedside manner, asking questions, asking for proof, etc. Have read them, have experienced them myself!
The vast majority of this heartache seems to come from a hesitancy to be "rude." If like me, you come to this Breast Cancer table a healthy adult all your life, you probably have no idea how to deal with an uncomfortable, even painful situation, in a medical setting.
Don't get me wrong. I do believe most people in the medical community are compassionate, educated, and on top of their game.
But even the best have "off" days. Having a plan to minimize the effect on you is worth the mental toil and preparation!
This isn't just about Oncologists and surgeons. It involves every single person you come into contact with during your tx, primarily the ones who TOUCH you.
I am not a naturally calm retiring personality. Yet, even I struggled with how to be assertive in the medical sphere without being offensive. Doctor knows best, right?
Well.....
Here are a few things I wish I knew going in:
You are going to be in treatment for a while, months, years even, and for some, the rest of your life. More than likely you will run into situations in which you are certain the person is incompetent, dirty, or you simply aren't confident in their ability for one reason or another.This person works for you. Period.
This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.
Advocate for your body like you would a child's, a husband's, a best friend's.
No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!
Walking out is ALWAYS an option. Barring emergency medical tx, there isn't anything that can't be rescheduled as far as I'm concerned. A few days won't make much of a difference, and even if it does, so be it.If someone makes me uncomfortable, doesn't wash their hands before touching me, seems overly nervous, ..in short if I feel they do not know what they are doing, I will stop the procedure immediately. Explain, in a nice way, that I am not comfortable and have no confidence in their ability, and would prefer to reschedule/have them call for a replacement/etc. Insist on it.
Here are some of her "go to" phrases:
1. "I'm not comfortable with this. Would you mind finding someone else to do it?"
2. "I understand your points. I hear you. But, this is what I've decided. Are you willing to do it?" (Be ready to move on if the professional says no.)
7. "Can you give me the research to back that up?" I reread her original post about every month. HapB ... Ask you MO for their research showing that there is no difference.Having been in your shoes, I would ask for the TEVA brand from your MO. Try it for about 45- 60 days and record every SE. See if you can tolerate it. You may find that it works.If not, show your MO your SE Spreadsheet an demand the name brand. If your MO won't do it, fire him/her. Or stay with someone who is not supporting you and go directly to the website for the brand name.
Vicky
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I would go to the Arimidex Forum and ask.
I did TEVA as the second generic. The hot flashes were seldom but brutal when they hit.
I go to a great place too with competent people. And sometimes, I say "when you took the generic, what side effects did you have?" Considering no one on my Oncology Team has had cancer or been a primary caregiver to an immediate family member, they shut up and give me what I want. It is an assertive side of me I don't like using but I will use it when necessary,
Vicky
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HapB
Here is the answer: http://www.breastcancer.org/research-news/20101211...
I thought you were wanting Arimidex. Sorry for any confusion.
Vicky
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Hi all - have been on vacation and not logging in, but am now back.
hap - there are no studies on side effects of aromatase inhibitors based upon generic makeup because its a moving target. You could take one generic formulation and people will have a myriad of side effects, or none at all. Generic manufacturers come and go. The side effects are often based on the inactive ingredients, and these differ from manufacturer to manufacturer. This is one reason changing to a different maker can help, even though the active ingredient is the same. I think that is what your oncologist meant - each generic has the same active ingredient - they are all the same in that regard. There are three aromatase inhibitor drugs - 1) Arimidex, with the active ingredient anastrazole - the generic would say anastrazole, Arimidex is the original brand name of the drug, 2) Femara, with the active ingredient letrozole - the generic would say letrozole, Femara is the original brand name of the drug, and 3) Aromasin, with the active ingredient exemestane - the generic would say exemestane, Aromasin is the original brand name of the drug. Arimidex and Femara are most similar, Aromasin contains a steroidal component. All three of these drugs control the enzyme aromatase thus disabling its ability to convert androgens secreted by the adrenal gland into estrogen.
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hap - that is the issue - what might cause SEs for you, doesn't for me - that is why they can't do studies of these generics, and why it is hard to compare between us here on this site. I have tried 3 brands of letrozole, generic Femara, and 1 brand of anastrazole, generic Arimidex over the course of the six years I have taken these drugs. I would advise you to look for the generic that has the fewest inactive ingredients, then find a source of that maker, and then ask your oncologist to write your prescription for that specific maker. This is what I did for quite a while when I returned to Femara from Arimidex. Unfortunately, that maker ceased production when they merged with another company. That generic actually had fewer inactives than the brand name drug did. You can research generic makers for each drug, then use a site that lists inactive ingredients for each, and go from there.
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SpecialK, welcome back, we missed you, hope you had great vacation
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Hap,
When my MO and I discussed the choices, I was not crazy about doing the aromisin either because of the steroids. I started with generic arimidex (Teva brand) and the side effects, for me, are not terrible. The hot flashes were crazy the first few months and I was extremely tired, put who knows if that was from the AI or just my body recovering from all the other treatments. Dryness and loss of libido are my main complaints.
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I started anastrozole (Accord) two weeks ago and haven’t experienced any noticeable SE’s, although I realize it’s early days.
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Hap, Medicare allows me to fill prescriptions anywhere I want to. Wouldn't the manufacturer be determined by where you get it filled?
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Welcome back SpecialK, hope you had a great vacation.
So...I had my second treatment today and saw my onc. He is putting me on the Exemestane when it's time. Now after what I read, steroid....ugh. Not cool. For those of you out there who are doing or thinking of doing Femara, I had zero side effects. Lost the tamoxifen weight gain after stopping that too. I wish I could just do Femara again. Have any of you done the same AI twice?
On top of the Exemestane, he asked me to think about Neratinib. We just got through discussing this drug in earlier posts. He went to some seminar and this was discussed and "I am the perfect candidate for it". I read what everyone here said about "benefits not outweighing the risks".
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HapB....yes I was on the generic Letrozole and had no side effects at all. I had gained 20 lb on tamoxifen and walked 3.5 miles per day, could not shed 1 pound. Weight fell off after stopping Tamoxifen. With the steroid component on Exemestane, I'm concerned about weight gain again. Would just love to be back on Letrozole. Not sure what seminar my MO went to but I am going to really research Neratinib. The diarrhea is a concern, especially being a home care nurse, I do not want to get stuck with diarrhea in a 7-11 lol. Glad you got the co-pay situation figured out.
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HapB - my MO said Letrozole and Tamoxifen failed. I am not a Doctor but a new cancer to me doesn't indicate failure, it indicates boobs that were trying to kill me. I'd be thrilled to be NED for another 18 years and give Letrozole another shot. Going to mention that to him and see what he says. Praying for you to be cancer free once and for all too
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Hap, no I'm not on medicare yet, I have 8 years to go till I retire. Luckily I have good health insurance through my employer, but your story of what to expect when I am on medicare is frightening!
I get my anastrozole at CVS and it is TEVA brand, hopefully yours carries the same. I did request that it be put in my file that I only want TEVA and that they should notify me if they change brands.
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hi gigi,
So sorry you are here! I was 40 when I was diagnosed. For what it's worth, my ob/gyn was insistent I keep my ovaries. Said it was really better to leave them in unless there was a problem.
I was premenopausal so I started Lupron to shut my ovaries down. 1 shot every three months. But I also opted for tamoxifen. I was concerned about bone loss at such a young age on an AI.
I did Lupron for two years. I had my last injection in the spring. Still no period back.
Lupron does cause a lot of side effects. In my case decided to stop the Lupron at the two year mark. I feel markedly better.
Not an easy decision, just wanted to share my experience with you.
Hugs and so sorry you've found yourself hanging out with us!
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If I do have SE’s from anastrozole, I’ll certainly be posting them here.
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Specialk welcome back, hope you had a great vacation.
Hapb, I had the same side effect on generic Arimidix/Anastrozole as you do with Letrazole. The pain was unbearable so my MO switched me. I didn't experience pain on Arimidix until 3 months in; I have been on Letrazole since May and tolerating OK so far although I do have pain, just not as bad as Arimidix. I pray you find a solution soon to ease your pain and get back your quality of life.
Kim Cee, I don't think 18 years NED is a failure at all; I would be happy to achieve that goal. I would apply the Coachvicky approach here: it's your body and your choice. If Letrazole worked before why not try again. Praying you too find a solution soon and get back to your NED status.
Coachvicky thank you for sharing TonLee's words of wisdom and your encouragement that we keep this in mind. It's easy to forget that we are in charge of our bodies and we do indeed have choices. My hometown medical team had one treatment protocol and refused to even consider my questions for other treatment options. I was not comfortable with the first doctor's "my way or the highway" approach so I went for a second opinion. My current MO, BS and PS have always given me multiple choices with detailed explanations on risks, benefits, etc. The most important question for our medical team is "are you willing to do what I ask"? I asked my BS this question and she said absolutely, it wasn't her recommendation but it's my body, my choice. I eventually went with her recommendation not because she said that was my only choice, but because she let me decide for myself. -
Kimcee my MO told me to run, not walk, away from neratinib. Said the side effects.are horrible for no real benefit.
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