TRIPLE POSITIVE GROUP
Comments
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Hap, will wait on SpecialK, but I seem to remember Zometa being linked to kidney disease. I am on Prolia. Not super positive though
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cherry, I hope your pain is better today. I would expect a nurse to take as much time as necessary to show you how to do the shots.
Moody, praying you feel better each day and recovery is smooth. I too was feeling almost normal, now I have 6 different incisions that need to heal. I was a little shocked this morning when I changed the dressings and saw the new scars.
whywhy, I did a full year of Herceptin and Perjeta but I was part of a clinical trial.0 -
hap - zometa is zoledronic acid, or Reclast, which is a bisphosphonate that is given by IV. Bisphosphonates, both IV and oral (oral drugs include Fosamax, Boniva, Actonel), affect bone and its density by binding to minerals and interfering with osteoclasts, the bone cells that absorb bone tissue. Spontaneous fracture seems to occur more frequently with bisphosphonates than Prolia as the bone is left less elastic. Prolia is a monoclonal antibody, like Herceptin, that acts by slowing down the speed at which old bone resorbs until the new bone creation can catch up. In studies Prolia increased density by a greater percentage, although I don't think it is all that much of a difference. Because Prolia is a more expensive drug, some oncologists start patients with a bisphosphonate and if it is not tolerated then insurance is more likely to pay for Prolia. Both drugs have the potential for flu-like side effects at the time of injection, but I have been on Prolia since early 2012 and had no issues at all. Both bisphosphonates and Prolia are thought to make bones less hospitable to bone mets by increasing density.
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Moody, KimCee and others, thanks for understanding how I feel.
SpecialK, a few questions...do you think it's odd that last year when I had two bone scans that showed no uptake in this area, that suddenly - 8 months later - I do have uptake? Doesn't that seem suspicious given I am finished treatment? And also, is it weird that I am feeling achy and some pain in this area? Don't most degenerative changes in the spine basically go unnoticed? I'm freaking out that something was seen on the last scan and now I'm feeling something. Also, why didn't they decide to pursue other imaging if this area was seen and if specificity is lower? They never even told me about this slight uptake back in July when I got the scan. And the reason I had the scan is because I was feeling creaking in my neck and tingling down my arm!
Hapb, I had radiation to my right side and in the armpit. I don't think the radiation would have touched the T1 - T3 area of my spine, but of course I'm not sure about that? I finished radiation in February of 2017.
I started Zometa in May and AI in May too I think. While I get joint stiffness (much less than you, Hapb), this is different as it is something that was seen on a scan prior. So that's why I'm spinning here.
Thanks, all...
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Hi Everyone,
I read everything you all discuss, but between work and recovery, I don't have a lot of energy to post. I truly appreciate your acknowledgments of my posts and help when needed. I'm sorry I can't always reciprocate. I'm halfway through my Taxol/Herceptin. 6 more weeks, and then 9 more Herceptin treatments that will be every 3 weeks. My PA summed up my side effects by saying that nothing was awful, but I have a lot of "stuff." I have a little nausea, itchy dry skin (scalp), acne, fatigue, insomnia (on chemo night), occasional body pain and headaches. I'm not terribly sleepy (except the Benadryl makes me sleep through chemo), but I just feel tired like I can't physically move sometimes.
The worst two things I think are the diarrhea and my taste buds. Everything tastes awful. Ironically, I'm gaining weight, but I think that's the steroids. It's only been after treatments 5 and 6 that food tastes so bad I'm actually eating less or not wanting to eat.
Any ideas to help with my taste buds?
Thanks again. Love you guys.
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p.s. I think someone was discussing the length of time between surgery and chemo. Mine was more than 90 days. I had my lumpectomy 7/13, but then I got cellulitis which took time to heal. Then I needed genetic testing because as an Ashkenazi Jew, I had the higher possibility of BRCA genes (luckily all genetic markers were negative). After that, I had brachytherapy, and finally they had to have time between the radiation and chemo. My MO said the window should be no more than 90 days, and I was just barely past that mark.
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posey - my degenerative changes at L4/5 that began long before breast cancer were discovered due to pain - I had the initial MRI because I was in so much pain I could not stand up straight. So, whether degenerative changes cause pain is definitely an individual thing. As far as something showing up, when it didn't before, just means it wasn't there, or wasn't seen. Imaging is not foolproof, but I don't know if it is necessarily suspicious. Every PET I have had notes the uptake in my lumbar, and now I have uptake in the thoracic as well, but none of it is bone mets - it is all crumbling due to age. As far as an area of uptake not being mentioned to you at the time - this is why I always get the report copies. I think you should ask for either an MRI or a PET to delineate this area with a different imaging modality, not sure a regular bone scan is definitive enough and I think corroboration with another type of scan would be good to have. I know you are worried and you need a better answer than you have received so far.
dannajae - unfortunately because you are on weekly chemo your taste buds may not recover until you are done, but I found that varying foods appealed at different points. Things that were cool and smooth felt better the further I went along - melon, smoothies, yogurt - stuff like that. Salty tasted good to me too. Try using plastic utensils also, sometimes the metal utensils gave off a weird taste. I also forced myself to eat red meat to keep my hemoglobin up but it tasted like oddly textured cardboard. I just tried to roll with it.
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Regarding the window of time:
I've read the research that says outcomes are better if there isn't a big time lag but Ijust don't understand this so I hope someone can explain it.
Suppose I had skipped my mammogram this year so the cancer was in there percolating for 12 more months before it was diagnosed? Does having a biopsy or surgery stir something up so that the cancer becomes more active?
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lita and hap - here is thestudy often cited that explains the 30 day optimal window to begin chemo adjuvently - read beyond the initial abstract to the text and there is info regarding why the timing can make a difference in recurrence risk.
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Deni, luckily I only have the one incision to heal and a week out from surgery, it looks pretty good. Hope that your incisions heal quickly and cause you little discomfort. I still have discomfort where those darn drain tubes were sewn in during my mastectomy....it is so tender there.
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Specialk, Hap - Yes, this was study I referred to in my earlier post. Interestingly, the authors say they don’t understand the “why” behind their results, either.
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dannajae - gentle hug, hope your appetite and energy improve each day. Hang in there
moody - my drain site still hurts too, I thought it was just my imagination. I'm guessing it takes a long time for these incision sites to feel "normal" if there is such a thing. Nausea is quite bothersome for me right now...I'm assuming it's a reaction to the anesthesia and other drugs that were loaded into my body the last couple of days. Hope your recovery continues to go well
Posey, I hope you get answers soon. Waiting and wondering is stressful on the body and you don't need that!
Hapb, I thought yoga would help with aches and pains. Now you have new pain, that stinks. It seems like there is always a domino effect with our bodies. We have to keep trying I guess to find something that works . But it sure is frustrating
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Denni, I didn't have any nausea related to the surgery. I did get car sick the day after my surgery when I took the two hour trek home. I usually do well after surgery and anesthesia. Hope that you feel well soon!
Melanie
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KimCee: did you tell your oncologist that you take supplements???
I remember my oncologist told me no supplements during chemo
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Does anyone else feel guilty about complaining? There are so many others that have it worse than I do.
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Gigilala, I did when the girl from his office called the other day...gee, ya think he would have told me not to take anything... Thank you, I sure hope that's what it is causing the elevation.
Danna, yes sometimes I do but other times I justify it. Bald and boobless just stinks...pity party here and there 😕
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danajae, I don't feel guilty about complaining. Here I have a place to express how I feel, good and bad knowing that someone else has felt the same thing. While there certainly are others with more advanced disease or more troubling symptoms I don't feel that what I'm feeling is more trivial because it is big to me at the time. I need to be able to say what I hate about cancer, to get it off my chest (!) And then I can pick myself up and face the world in a better frame of mind or at least a damn good mask. I love seeing how we help each other out here too with support and also ideas to help symptoms. This is good for my soul.
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Hap, while I heartily sympathize with the financial burden you and others incurred while being treated for any illness, the medical costs deduction was raised to fund ACA specifically, not to fund the government in general. ACA has helped many, many cancer patients to have any insurance at all.
To me, it’s flat out wrong that anyone should have to face financial loss because of any illness
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Hap, I agree with you that funding should have come from another source. I was speaking only to clarify the use of the revenue.
The Senate bill retains the deduction but the House bill eliminates it completely. Definitely time to contact your representatives
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Thank you,Lita19901, for the clarification. I don't know many details about the bill (either version) but a friend emailed me in panic today. That made me think I'd better start reading.
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I don't feel bad complaining - I justify it by- if we all 'complain' we can learn from each other.
When we feel bad, we can let it out - when we have something to celebrate that nobody else would "get" - we get it. I want to hear it all - the good, the bad and the raw deal.
I'm complaining because my Mouth is full of sores - raw horrible sores and my MO finally called in the Magic Mouthwash and It won't be ready till noon tomorrow.. so I'm sucking on ice. Whining ....because I don't have the throat lozenges to numb or the Mylanta or Liquid Benadryl to swish. I only have the usual suspects: Biotine, Baking Soda, Salt concoction. Night all0 -
PS Hap B - what you said really is true '(About BC becoming a pink cupcake party)' when I told my brother I had cancer - and then said Breast Cancer, he said "Oh, that's nothing, you'll be ok"
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Rljes....that just made me say Grrrrrrr. The pink cupcake party ticks me off
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I don't consider any of us as complainers, we are simply sharing what we're going through in a safe and supportive environment. Like Hapb, I was taught to suck it up buttercup but I think all cancer patients have earned the right to say anything they want. It is not healthy to keep things bottled up. I can't fathom not being able to express myself freely as I can with this group and other cancer groups I belong to. My friends and family simply cannot relate to what I'm going through so I don't say much any more. I think there needs to be a balance though so you don't get stuck on just the negative; we all have those periods of frustration and really crappy days. I believe in getting help if there are more crappy days than good.
Please don't ever feel like you're complaining, we're here to listen and are often saying, "yes, I feel the same". I am so grateful for the support and inspiration from each of you
I hate pink cupcakes, ribbons, etc. too. It really paints a very "warm and fuzzy" outlook of breast cancer when it is anything but.0 -
Hi All - Day #10 / Chemo #1
After getting the "Mary's Magic Mouthwash" that CVS compounded from MO rx - My mouth sores that felt like dozens of tiny razor cuts went to just 2 sores inside upper cheeks. Yeah! Relief. I had tried everything, and nothing was working. Then, my scleroderma, specifically Calcinosis in my finger tips are in over drive.
Besides those 2 things : I'm OK.0 -
I rinse with warm salt water too and it works. I never got mouth sores before and am not quite sure whether it is chemo or Invisalign. Whatever it is, warm salt water is da bomb.
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Hi Girls,
My mouth gets sores in it, so back I will have to go to salt and baking soda. I'm not sure if it's the Letrazole or Zometa, but it's definitely there. I did have a prescription for Magic Mouthwash, but lost it!
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rilles, does your scleroderma cause mouth sores, or make the chemo related sores worse. Glad to hear magic mouth wash works so well for you. hope you have enough of your magic potion to last. It must be powerful stuff
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Hi Hapb, the first time I had Zometa, I felt really sick (flu like) for a day after. The secon infusion wasn't bad at all. Some people get lots of bone pain for a few days too (I didn't).
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First chemo yesterday! Long - but mostly uneventful process. By 10 p.m., I looked sunburned on my face, neck, and chest... and my face is puffy. Morning - less red, but still puffy. Tired and a little headachey. So far, so good!
I think I'll take a nap now.
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