TRIPLE POSITIVE GROUP
Comments
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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.0 -
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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Coachvicky - hope your stitches aren't too bothersome and each day gets better. It's good to remind ourselves that the recon is a rebuilding process. I'm still a work in progress with another surgery coming up. I appreciate the expertise of my surgeon and know he is doing his best to give me back what I lost.
Enjoy your vacation!0 -
Lumpectomy complete. Port in place. I think the worst part of my day was the nuclear injection around the nipple. I have a high pain tolerance, but that made me cry. It burned and hurt. Radiologist is a liar (lol). Said it would feel like bee stings. Ummmm, no. Angry hornets injecting caustic juice? Maybe.
Resting at home now. Ready to move forward.
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All - thanks for the welcome back! We had a great trip - I planned it but didn't tell my husband any details - just put the address in the GPS and he drove. Basically a tour of southern cities, the UNC and U of Miami (he is an alumni) football game, then a last stop at Amelia Island. Relaxing and fun and full of surprises for him!
hap - my insurance contract for Rx was CVS for a long time, just recently switched back to Walgreen's. At CVS I was able to request the manufacturer and they procured it from their warehouse for me. As long as it was a generic they routinely stocked they could provide it, and CVS will usually carry more than one generic of any of the AI drugs.
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Tresjoli thank you for that reply. I do plan to run, not walk away. I just don't see the benefit outweighing the risk. If I read it right it was 93% for neratinib and 91% for placebo. Both good odds!
Deni, I just needed one of you to agree. I am feeling Letrozole did me fine. I am going to voice this next time I see him.
Meowmmy, oh my gosh, I hear you. First bc I had the shots while awake and it was awful. This time breast surgeon (different one) waited until I was asleep. Thank goodness. Rest and recover well
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Hap.... I told them I have tiny veins and the IV had to be ultrasound guided. Nurse and nurse anesthetist both insisted on trying, despite my requests. Three attempts. The blown veins. Finally called the PICC team. She got it in one attempt and didn't hurt me.
Lesson learned. I will absolutely refuse to let anyone "try" again. Ultrasound, PICC team, no exceptions. My poor hand is a mesS.
I've never been so grateful to be unconscious.
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Kim - the doctors acted surprised that it hurt so much, but my technician was great. I will never do that again without being heavily medicated.
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hap - no I am not quite ready for Medicare, I just turned 61. I have insurance through my husband's prior military service. They do contracts with both retail pharmacys (previously CVS, currently Walgreen's), an Express Scripts mail order service.
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hap - drug costs are a big problem, I agree. I am very fortunate to have excellent drug coverage, with a low Rx co-pay. I will have the same coverage, in the form of a Medicare supplement, which I reach Medicare eligibility. As far as the Herceptin, most who have decreased LVEF find it to be temporary and Herceptin may be resumed after a break, but there are some who can't continue with Herceptin due to this.
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I agree with coachvicky that TonLee who started this thread is avery clever lady and she had a very precise way of expressing herself. I also red her answer on this thread where she just listed all her injuries and SE she sustained after the treatments. I am torn between two choices at the moment and wish someone would make it for me. Almost all the time we have to choose between two or more bad things, really bad for us with all these SE and future risks. Only because we were so unfortunate to get this disease. Neratinib is awful but 2% difference is still something, I will try to talk to my oncologist later on in order to see whether I can get it.
I was tolerating Taxol well until probably two infusions back, then I started to get tired on days 3-4. This week it finely got me. I have been in bed since Tuesday sleeping though the days or just laying down, yesterday I decided to go walk to a counselor meeting and whole way I felt like I were 90 years old or a junkie, never did drugs so I wouldn't know but I believe I had trouble to walk straight, my legs were not with me on this. And today came nausea, I have only one infusion left but how am I suppose to start an EC in two and half weeks I have no idea. I also have pain in my liver and back, it feels like I am so done.
SpecialK, your trip sounds wonderful and, coachvicky, good luck on yours. My husband asked me whether we could go somewhere for a week between the treatments and I just told him that I fear of being far away from the hospital right now, like this is the only thing that matters to be near knowing they will take care of me. What a life.
Cherry
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Hi all. Well I had an ultrasound yesterday and there were no blood clots found which was very good news indeed. My left arm swelling and pain started at the elbow and moved to my wrist. The elbow is much better and the top of my hand and wrist are more swollen and painful. Go figure. I am not sure what the next move is. I'm back on anti biotics for the drain wound that will not heal. It started to get red and hot again. Thanks for listening.
It's hard to work when you have a setback. Everyone thinks the cancer is behind me but I feel I like I am still in the thick of treatment.
Welcome back SpecialK.0 -
Suburbs, no clot, good news indeed, I hope the antibiotics work for you and it gets better soon
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Great news Suburbs...hope the antibiotic kicks in quickly.
I have another question. Do those doing Taxol and Herceptin receive the Herceptin every 3 weeks during Taxol? I was pleasantly surprised at treatment 2 yesterday when it was Taxol only
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HapB, I do not, I really, especially in this very moment being complete paranoid, I do not want any of these treatments, I thought Taxol was being nice to me and so thought my doctors. Now I wonder if I should call them and ask to do my blood work before the last infusion, I cannot go upstairs without holding the railing in my home, and we are talking about eight stairs. This week I just crushed. I am eating fried chicken liver, red meat and something very peculiar, a Swedish thing, called blood pudding, it is like a meal but tastes sweet and is served as so many things with lingonberry jam. It is like craving I suspect my hemoglobine is very low right now. Why I am contemplating additional treatment? Because even this bc professor who called me this week agrees with me that I am being borderline for more treatment. He said that for the size of this tumor they use weekly Taxol, a new regimen, based on Dana Farber study that has proven good results so far. But this study is new and they have not been using this regimen for a longer period of time. Due to the presence of LVI we can reconsider adding anthracycline but it is up to me. If he would called me and said: you shouldn't worry, we are over-treating you already, weekly Taxol is not less effective than any other regimen, then I would have called it quits. But he did not. I asked him about different regimens and he said that we cannot compare Taxol, TC and AC just like that because there are no study, a real randomized that can compare efficacy. But there is a study, he mentioned the name, that compared AC to TC (Taxotere+Carboplatin), AC shown to be more effective. There is no study that compares Taxol to AC, and only weekly Taxol is not given for larger tumors that has spread to the nodes because it it simply not enough, or at least they do not know at the moment because there is no study on that. Another oncologist told me that it may be the other way around, that they over-treat smaller tumors with Taxol, they just do not know. And it is not enough for me because I need to act now.I just thought that I go with one infusion EC and see how I will tolerate it, if it will be really bad I will stop.
About how I looked before, I cannot even start on this, I feel like it has been in another life. The stairs, I never walked them, I used to fly them in a couple of steps. I was contemplating whether or not I should put botox in the wrinkle between my eyebrows and decided against it, thinking, no, I want to be natural and age with grace. So much for that. I am completely unrecognizable and the worst part today was my youngest's look at her face when she saw me crying in the kitchen when I told my mom how I felt. She looked worried and upset and did not know what to do and I hate the fact that she is going through this when she is just 11.
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I hear what you are saying, Hap, and I am very sorry about your childhood. Unfortunately it is nothing one can be trained for, I am doing the best I can but I am far from handling it well. We are trying to keep her busy, she is at her friend house right now, and I am trying to cope with the fact that life does not always turn out as expected, or should have been, or used to
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Hap and Cherry,
I talk to my daughter about cancer. It's just a disease. While I was undergoing treatment, it was no fun for her. But, she's OK now. Kids don't need to be burdened by adult problems, but they do need to develop resilience. We can't shield our kids from all of life's challenges, but we can help them get through the challenges.
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KimCee, Herceptin will be every third week, we get it subcutaneously in Sweden, it is over in 10 min but the shut is painful
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wow, a shot? I get a drip. I am glad you responded. I can't find anywhere where patients are receiving Taxol weekly and Herceptin every three. Thank you Cherr
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kim - you may be getting 21-day dose so that they don't have to dose calculate when you finish the Taxol portion, and move to H only infusions. At the end of the chemo portion, when the side effects are cumulative from that, they may not have wanted to triple your dose from weekly Herceptin in an effort to minimize problems for you. Starting you on the 21-day schedule from the beginning might make it easier for the long run, and you will already be adjusted to the larger dose.
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