Stage 2 Sisters Club
Comments
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NisaVilla, thank you for the feedback. I guess I will just have to get used to not tasting certain things for awhile.
Ruthbru, I have found out that I can taste certain Mexican and spicy foods, as well as BBQ and anything tangy. I have to agree, chocolate does taste weird to me also. It may save me from gaining weight also, especially around the holidays.
Also, thank you both for the comment on the hat. I have a great family support system that set me up with all kinds of turbans, do-rags, and knitted hats.
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ruthbru...how did you find out that the hormonal pulses cut your risk of recurrence be 50%? I was never told only that it was the biggest bang for my buck
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There is a website for doctors, where they can log in all your information and let you see your odds with different treatment options. It is called
Adjuvant! Online.....have your doctor do it for/with you. They need their 'doctor' information etc. to log in.
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Dawn...I also lost my taste for many things, and many things tasted downright bad...and I also love good food! The things that seemed to taste particularly bad varied from cycle to cycle, but coffee, sadly, always tasted bad! (I drank it anyway, what can I say? I am a caffeine addict. The good news is that I was able to cut back on the amount of it I drank). And like Ruth, the two items that consistently tasted good were mashed potatoes (yum...) and Mexican food, specifically chips and salsa!
But hang in there, it does get better and the taste issues will resolve post chemo. I am now almost four weeks PFC, and my taste is almost normal. Even coffee, the last to resolve, is starting to taste good. I went out to dinner with friends last night and really enjoyed the meal, and Thanksgiving dinner also tasted great!
Hugs..
Octogirl
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Octogirl, thank you so much for the feedback. I am the coffee addict also, but have switched to decaf because of the jitters. I find that putting French Vanilla flavoring helps quite a bit.
I will definitely hang in there. I can't wait for my taste to come back. Thanksgiving was definitely different for me this year. Ate all my favorite foods but they were not quite the same.
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CanDo and Dawn - welcome to the Stage II group. I'm glad you found us.
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ThinkingPositive - I learned about the osteoporosis when I had my first Dexa after one year on Arimidex in Oct 2014. At the time, I chose no treatment for one year to test if exercise, diet and supplements would help. They did not. I had my second Dexa recently and my oncologist left voicemail indicating that osteo got worse and it was time to discuss other options. I am sure all the options are the traditional medications for osteoporosis. I am going to schedule an appt to hear options. As I am a sucker for 2nd and 3rd opinions, I will probably do that. As it is, I am on Arimidex for life. I wish I could avoid more medications (and its known/unknown interactions) for life. I really don't want to quit Arimidex. I have great faith in this medication. I would rather have a broken bone and not a recurrence. Please let me know what your results are after your next Dexa. Are you having any side effects or concerns about actonel? Hugs, Nisa0
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Molly - 2 rads to go girl! Getting ready to do a happy dance with you. What are you going to do with so much time in your hands when you are done with active treatment?! Don't be surprised if you feel a bit weird next week. It is an interesting transition from being so closely monitored by doctors to being told "see you in 3 months." Hugs, Nisa0
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This was posted on the BCO research page Tuesday, December 8, 2015 6:30 PM. It sounds like it will be very interesting and helpful information.
The San Antonio Breast Cancer Symposium will have a discussion of continuing the AIs and at what cost.
"Over the past several years, new data has emerged which shows the added benefit of more aggressive endocrine therapy for both pre- and post- menopausal women. With increasing use of ovarian suppression in pre-menopausal women and extended adjuvant endocrine therapy across the board, we are seeing subsequent increased toxicity. While these more intensive treatments do offer benefit in certain high-risk populations, they can also significantly decrease quality of life for many women. This talk will discuss how to carefully weigh the risks and benefits of an increasingly aggressive endocrine therapy approach for each patient. We will also discuss how to tailor treatment options to the individual patient and her cancer."
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Ruth - thanlk you for posting this information. It would be good to attend this conference. Imagine how fun if those of us on AIs could meet up in San Antonio! Those pre-conference statements seem consistent with the new wave opposing over-treatment and in favor of more targeted treatments. It will be years before we know if less treatment is the same or better than overtreatment but it sure is a research question that needs to be answered.
Thanks again and good weekend to all. It is 65 degrees in San Diego and we are all wearing scarfs and coats LOL0 -
Molly - you're in the home stretch! It seems so long when you're in the midst of radiation - and then all of a sudden it's almost over. It was a weird feeling, for me. I got lucky - they told me to expect my skin to keep getting redder for a couple of weeks afterwords, but it didn't. It actually started fading a LOT by the time I had finished my boost. Thank goodness for small favors, right? Hope you'll do well, too.
Octogirl - I hope you've started off o.k. and will maintain that. I was surprised by the emotional toll of radiation plus the fact that the side effects were SO variable and SO unpredictable. The only thing that was predictable was my routine and schedule!
I put cold compresses on top of aloe (liquid, not gel) immediately after each treatment, drove back, slathered with more aloe. I used cold compresses generously in the evening - it was a long, hot summer here, so that felt good. Also used Boiron's calendula lotion (coupons on their website, by the way) and Aubrey liquid organic aloe. Emu oil at night. And I took Aleve before each treatment to reduce inflammation. Drank tons and tons of water, exercised at a moderate level every day, stayed out of the sun and went to bed early-ish most of the duration. My skin did well - even the supraclavicular area that I expected to fry. Maybe something in all this will help you, too.
Nissa - I had mild osteopenia prior to dx. Despite my years of weight-bearing exercise, etc., nothing seems to make a difference. There is, however, a lot of osteo. in my mother's family, so that might be a factor. My MO wants me to start on Zometa in a few months as she's been pretty impressed by its role in reducing recurrence. In this case the osteopenia may actually help persuade my much-less-than-helpful insurer to approve it. Like you, I'd rather risk a broken bone than a recurrence and I believe that the course of tx. with most bisphosphonates is limited, as opposed the A/Is, which for some of us will be very long-term.
Thinking + - I, too, will look forward to hearing about your experience w/Actonel.
Ruth - I was interested in that material, too. I know some women really do have a hard time with ET so it's good to see discussion about risk/benefits but at the same time, we don't have that many other tools to stave off recurrence...
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Hopeful - loved your helpful sharing for Octogirl. Wish we had a way to "save" posts like yours. As for osteo, I don't know a thing about each treatment and will read about Zometa. I suspect osteo is also in my mother's side of the family just because they were small-boned women, but the four sister died very young from various cancers that their medical histories are incomplete and from a time when records were not archived. I recently met a woman on crutches who told me her medication for osteo had "dried up" her bones so extremely that her femur broke instantaneously and without trauma. She simply got up to walk and her femur cracked open through the skin! I realize it is likely an isolated case but still, scary it is. On the other hand, my osteo spots are in various places but the ones on the spine are the most challenging and probably need treatment in the next months. This week they are going to send me scanned copies of the last 2 Dexas and I will see how much worse it has gotten. Hoping for just a "little bit worse." Those of you with good osteo treatment stories, please post!
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nisa - I have been getting Prolia injections since six months after starting on Femara. I was osteopenic prior to breast cancer diagnosis due to a total hyst/ooph at the age of 45. I had been stable for the nine years between that surgery and the BC, but chemo and six months of AI drug pushed me to the brink of osteoporosis at each DEXA point measurement. I receive a sub-q injection of Prolia every six months, I have zero side effects. My last two DEXA scans show normal density - not just improvement, so this drug works very well for me. Prolia is different from oral bisphosphonates like Actonel, Fosamax, Boniva, and the IV med Reclast, in that it is a monoclonal antibody that slows down "old bone" removal allowing the "new bone" creation to catch up. Bisphosphanates coat the bone to strengthen it but that can make the bones less elastic and more prone to fracture since they don't bend as well.
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specialk....did your MO approve of this drug. When I mentioned Reclast my MO shook his head. I am very scared about getting any worse so maybe I should mention this drug. Who do you see for your osteopenia.
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thinking - my MO is the one who ordered it and administers it, he is the only doc I see regarding this issue.
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Hi all! Just popping in to say hello and wishing you all an easy Monday and start of the week.
I'm interested in the AI discussion, since my MO plans to keep me on them for at least 10 years, maybe life!0 -
Specialk - that's interesting. When I got the dexa scan results back the MO's nurse called me and told me to make an appointment with a osteoporosis specialist. UnFortunately I was not able to get an appointment with the one they suggested so I had to make an appointment with another one who happens to not be in the same healthcare system. I have a follow up with her in January I think I will ask her about prolia that you are on. Don't want to find out in year that it has gotten worse. Did you ever have any kind of discomfort in the osteoporsis area?? Also this doctor was kind of shocked that the MO had never sent me for any CT or Bone scans for the bcwhich now makes me question the facility that I go. It's strange how one set of Drs follow certain protocols while another group less than 20 miles away follows something different.
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Liz - Welcome! Reading your age makes me want to scream. Hope you are navigating treatments as well as possible and that chemo is not too bad. Are you on AIs already or will start after active treatment ends? We are here for you, jump in and let us know how we can help. Hugs, Nisa0
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SpecialK - you want to read article summary published by Breastcancer.org today. Fabulous news on Prolia, straight from data presented in San Antonio last week.
Hope those of you in active treatment are doing ok. How it is going for you Molly now that you are officially post-treatment?
Hugs to all, Nisa
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Hi Nisa , I'm doing okay. Glad to be done with rads. Still feeling really lousy though. I looked up SE's for anastrozole and the nausea, food aversion and thirsty feeling are all possible SE's.
SpecialK, I read that article. Great news! I hope everyone is getting ready for the holidays and feeling okay. We got our tree today. It feels good to have some festive feeling in the house.
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nisa - I had read that article! I was aware that bone strengthening drugs helped make a less hospitable environment for bone mets, but much of the previous study was on bisphosphonates. Since Prolia is a monoclonal antibody drug, and functions differently from bisphosphonates, it is great to know that it provides the same type of protection.
I am enjoying the approaching holidays - I had surgery last Thurs. to place a new expander, so it forced me to get decorated, shop, do the cards, etc., so now I am ahead enough that I can relax a bit.
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specialk ...hope your surgery went well.
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SpecialK - another surgery my friend! You have travelled such bumpy recosmtruction road with much grace. I hope this is your penultimate! Nice silver lining to be ready for Christmas early in the game.🎄I read about Prolia and SE's (some are scary) and then was able to schedule an appt with a UCSD osteo specialist. My first consult with another endocrinologist was not what I expected. Hoping my next visit is worth the long wait out.
Molly - my treatment ended early because I was very anemic and had neuropathy. And getting over both took months. Take your time recovering, transitioning to a "new normal" can be taugh. And there are other AI options if Anaztrozole is too much. So nice you got your 🎄tree...getting in the spirit here as well!
Hugs to all, Nisa0 -
Just wanted to take a minute to wish all of you wonderful ladies on this thread a Very Merry Christmas and a very Happy & Healthy New Year!
You have all been a wonderful support system and I cherish each and every one of you!
I hope those in active treatment find some peace with family and friends and enjoy a little break from the beast during the holidays. To all past the active stage and still supporting the sisters here - Hugs and best wishes to all of you...
Hope Santa is good to all of you!!!!!
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Merry Christmas! Happy Holidays! Here's to a wonderful, good news, good things happening 2016 for us all!
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Yes yes! I too would like to send love, thanks, good wishes and hugs to you BCO sisters including Mods, extra hugs to those in active treatments, and a promise that one day I will travel to meet you in person my surgery-sister mjgambas!
We have rain and a bit of cold weather here in SoCal so am not too jealous of those of you enjoying a white Christmas. I'm really enjoying this Xmas season this year 🎄🎁 and feel blessed to be enjoying yet another Christmas with loved ones and in good health 🎄 May we all have a nice and BC-free 2016!
Much love, Nisa 💚0 -
I hope all have a lovely, happy holiday filled with whatever you love most...and here's to a New Year filled with peace, joy and good health....Hugs to all of you!
Octogirl
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Thank you - and the same to you and your family!
Merry Christmas to each of you - and for those who are dealing with illness in their families, particular thoughts and prayers are with you.
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Thank you for the welcome! I have 2 DD Taxol remaining and then rads and ooph. I will start Tamoxifen to bridge the gap until my ooph and then AI s/Everolimus afterwards. This last month of chemo has been really hard, but I'm hanging in.
Merry Christmas to all my sisters!
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Merry Christmas and Happy Holidays to you wonderful ladies! Nisa, I didn't realize you were So Cal like me!! I am loving the weather.
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