De Novo Stage IV
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Hmm, I don't know if I have the same manufacturer as in the beginning. What if it's the only manufacturer my insurance uses? How do I find out? My insurance company did switch to a different pharmacy. Mine is also Breckinridge.
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There is a member on the Ibrance thread, can't recall her name, who owned a pharmacy. I believe her spouse was a pharmacist. Perhaps someone recalls who the member is but she would be wealth of knowledge in this area .
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I think that’s Ciaci whose husband is or was a pharmacy owner.
Just my experience, but Breckenridge was the brand of Letrozole that gave me the worst painful joints. I had been getting Teva steadily and then once got Accord ( no noticeable difference) and once Breckenridge. I called my pharmacy and requested Teva only, and Accord as a second option. They’ve been very good at giving me only Teva.
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thanks Rosie for recalling the members name. When you switched brands did it help with the insomnia? I’ve tried so many suggestions from the members but truly insomnia is my albatross.
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Very interesting information. I will tell my doc this. I have Express Scripts right now. Not sure if they’d be able to send me a different type. Thank you so much.
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KBL: I have Express Scripts as well. Let me know what you find out. thanks
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I definitely will, Tinkerbell107.
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About the joint issues - it's a problem with all the anti-hormonals. It helps to keep working on flexibility exercises. I found this book, written by a woman who was almost completely incapacitated by rheumatoid arthritis. She used simple stretching and strengthening movement to regain her life. The book is out of print, but still available, and there are other, more recent publications on how to defeat stiffness and pain with movement.
https://smile.amazon.com/Arthritis-Stop-Suffering-...=sr_1_1?dchild=1&keywords=arthritis+darlene+cohen&qid=1626536029&sr=8-1
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KBL - I am not de novo, however I wanted to let you know that I have much less joint pain on Fulvestrant compared to femara which I took for almost 7 years. I stopped femara in 2015 so don't know what brand, I am sure it was generic.
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KBL, yay great news for stable. I am sorry about joint pain, I had awful joint/ bone pain when I was on zometa, when I switched to xgeva bone pain got better but still I have joint pain in my fingers, ankles/foot and knees and elbows. Sometimes movements are difficult like there ino flexibility in my joint. These are se of hormonal therapy. But I think it is good to let your MO know about how are you feeling.
In a separate note, a nutritionist (reliable source) suggested Golden Milk, as a good homemade recipe for arthritis and joint/bone pain. Turmeric alone is a rich source of antioxidants.
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KBL and Tinkerbell, I have Express Scripts too but pick it up monthly at my local drugstore. I tried to set up 90 day supply for mail delivery but they said I needed a new prescription to make the transition so I have just left it monthly pickup for now. Anyway, I did speak with an Express Scripts pharmacist about noting my brand request and he was very willing to note it on my account. I just need to get my MO to submit my next renewal as mail delivery. Good luck to you both, although we are all different in our side effects and you may or may not find a different brand better.
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Ladies, good to know that you can request a particular generic manufacturer and the pharmacy would try to honor that. I was thinking getting the more expensive brand name would be the only alternative. Thank you all for sharing
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Yes, Olma, you can. I belong to an all inclusive HMO so all of my prescriptions must come from their pharmacies. I’m currently on exemestane but have been on the other AI’s as well. They just send me whatever generic they have on hand. If a patient has a problem with a particular brand they accommodate the patient quite easily. I use eyedrops for glaucoma and had a terrible reaction to drops that contained preservatives. I literally wanted to scratch my eyes out. The preservative free version of the drops is much more expensive but they switched me to them without any hassle.
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great to hear and thank you¡ It's amazing how the ingredients (the inactive ones) can differ and cause side effects.
I've thought about going to brand name Arimidex and paying full freightmyself because it's affordable- but I'm also going to check which manufacturer my current generics have been coming from.
Take care everyone
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aprilgirl1, thank you so much. Sorry I’m just getting back in the boards. I had my grandson today, and when I’m with him, he is my world.
. That’s great to know. Did you switch due to progression? I wouldn’t be switching for that reason. Thank you Snow-drop and Rosie24. I will definitely check switching manufacturers too. This is a good topic to discuss.
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@KBL, How fun to have your grandson with you today! I was taken off of femara in 2015 due to "your risk of a breast cancer recurrence is so low, your risk of bone loss due to 7 years on femara is a greater issue".... you know how THAT worked out.... I was off all treatment with mammogram and MRI follow up ( dx 2008 with stage 1 node neg breast cancer treated with cmf/radiation and lumpectomy)
Fulvestrant/Ibrance started with stage IV dx in 11/2019.
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Clean mammos until suddenly it wasn't, then BAM, you've got cancer, and hey look, it's already travelled.
I had a callback after my first mammogram a few years ago, with negative results, but "dense" breasts. I then had regular screenings with no issues. My next one should have been in April 2020, when this city was SHUT. I noticed a weird indentation in my breast in summer 2020.Things were all very much shut down here including our family business. I finally got into see my GP in late August. Then the whole school year mess started sort of. On again off again schools and jobs for us made Sept crazy. Oct I finally got serious making appointments for everybody including my mammogram. Covid delays meant it was Dec 30, so I had 20 months between mammograms. Call back the following week. Biopsy scheduled for Jan 28. On Jan 12 I woke up w a fever and an email from work (where I wear my mask religiously) saying I had been exposed 5 days prior. Positive covid test. Biopsy canceled. 3 weeks of "mild " covid (fever, cold, lose of taste and smell, no appetite, HEAVY PAINFUL cough, hard to breath...) When the only symptom was lingering cough i started going in for what turned out to be weekly covid tests. They wouldn't do the biopsy with a positive test, even though they acknowledged that you can test positive for months after recovery. Finally they agreed to do it with a positive antibodies test.
More call backs, mammograms, ultra sounds, MRIs CTs bone scans (insurance wouldn't cover PETscan)...
Mastectomy scheduled on my birthday.
2 days before, my surgeon called and told me they were canceling and I need to speak with her medical oncologist. They found something on my sternum.
So now I'm on letrozole, trying to tolerate ibrance, but my white blood count keeps going too low. I keep taking 2 weeks of and getting a lower dose. I hope the current 75mg is working. And getting my monthly xgeva.
I'm confused about the surgery. Was told the team will re-evaluate after I've been on treatment a while.
It's been a whirlwind few months. I have so much else to focus on, I usually don't think much about it. But then I have nights like this where I can't sleep and just want to cry. How did it happen so quickly after all those clean mammograms? I did stuff right- I breast fed for a total of 5 years. My job includes excersise, I eat real food, I have no family history of breast cancer, I have none of the 84 genres for it.
So much technical jargon I haven't caught up with yet. Too much life going on to read up much.
I wish you all well.
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Dancemom
Hi! We are in the same boat as my mamms & u/s were also clean until I finally pushed for a biopsy. De novo Stage IV with 1 bone met. I’m doing Faslodex, Zolodex & getting ready to start Kisqali (similar to Ibrance).
My MO has also pushed off surgery until we get some of this treatment going. I have requested rads on my bone met so we can hopefully kill those cells. Since you have to go off Ibrance to have surgery, I think they want it to do it’s job for awhile before pausing treatment (for surgery)
I’m still new at this (6 weeks in) & learning how to navigate the stress. No side effects yet but I’m sure they’re coming. Hang in there & keep us updated. The women on this thread are incredibly knowledgeable & supportive.
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Thank you for the explanation, Aprilgirl1. I’m sorry you came off Letrozole. It’s one time you’ll never know if it would have kept the cancer at bay. Post here any time. I appreciate everyone and their story.
Dancemom, I’m so sorry for everything you went through. I hope you can get Ibrance to work with your numbers. I went straight from 125 to 75 and still have to take weeks off here and there. There is no rhyme or reason as to why some months my numbers are better than others.
NCYogi, thank you for your kind words. We are all here for each other. Support from this group and others in the forum is so important
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Good morning,
Welcome to new members, though we really wish you didn’t have to join us.
I am going to answer the big question for you… How did this happen when I ate right , exercised, breast fed, did self exams, had regular mammos etc. ? And the answer is… no one knows. Yes, the reality is that despite advances in diagnosing and treating bc and despite everything that you might do to lead a clean lifestyle there is no guarantee that you will not develop bc. Yes, eating well and exercising are important in general but again, a guarantee of nothing. I don’t say this depress or upset anyone but I hope everyone understands that what they did or didn’t do likely had little effect on their development of bc. Additionally, I feel like the public has been lead astray about bc, almost believing that no one becomes seriously ill and dies from it. They are often shocked to find that stage IV can and does happen despite everything they have read and all the pink ribbons in the world. Lastly, the topic of fairness. Yes, it does seem unfair that good people who have taken care of themselves develop bc but I hope that as adults most of us have realized that life can often be unfair. I am not sure who promised folks that life would be fair, but they were wrong.
What I can say is that I have lived with mbc for 10 years. In that time, I have seen several tx advances that have enabled stage IV patients to live longer and better lives. Not perfect and certainly not a cure but a slow march forward and there in lies the hope. Please hang in there and know that there is hope, not as fast as we want but hope nevertheless. Take care.
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Thanks ladies. I'll keep reading and learning.
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I totally forgot to mention switching manufacturers to my doc yesterday. We talked about switching to Anastrozole, it’s like Coke and Pepsi, as she describes it, but today the nurse called and said to go off Letrozole for one week and see if it helps my joint pain. Has anyone gone off Letrozole for a week? This will be the first time I’m off since starting in June of 2019. I know a week probably won’t matter, but you can’t help getting nervous.
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KBL, I can't compare letrozole, but the anastrozole has joint pain as an SE, also. Maybe not as bad?
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I agree, SeeQ. I guess each one has a different effect, so I’m not sure whether switching will help. I’ll see how I do after the week off. I sure could use a joint pain break. I don’t know if one week is even sufficient to see.
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KBL, I would post this question on ibrance thread, as more ladies might have same experience.
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KBL - I hope you get some relief. I told my MO that's the part that makes me feel old. He said he hears that a lot. My hand and feet are what bother me the most. Usually, it's much better after taking a few steps. I'm trying to stick with one brand of generic to see if that helps, as has been mentioned on the Arimidex, etc. board. And I'm hoping the parathyroid surgery will provide some relief in my hands.
Now, if I could just find the magical cure for hot flashes, especially at night.
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Now, if I could just find the magical cure for hot flashes, especially at night.
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Snow-drop, good suggestion. I’ll do that.
See-Q, yes, mine are hands, fingers, knees, and feet. I’ve had nonstop hot flashes since 2013 that started after hysterectomy. I get them day and night. I hear ya sure would’ve nice if they stopped. Please let me know how surgery goes.
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KBL, I've gone off letrozole for at least two weeks annually. I did that every summer for the 5 years I was on aromatase inhibitors. I did switch up maybe once or twice to Arimidex. It was heaven to be off and also pain was always a bit better even after going back on the meds until the cycle re-started. Exercise also helps a lot. Outdoor exercise during summer was the best.
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Thank you, Heidihill. It's been two days, and my knees are not screaming as loudly. I'm not imagining the ache can go away that quickly. My hands and feet still hurt, but I'll see how it goes the next few days. I make sure I do walk every day, mainly to get my hips moving because they're a mess, but I don't think that's from the Letrozole. I like the idea of going on a break periodically as long as it doesn't hurt treatment.
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