Stage 2 Sisters Club
Comments
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One more quote from ASCO & then I really have to go: This is in reference to a European study on adjuvant therapy for breast cancer and were analyzed in terms of annual hazard of recurrence of breast cancer.
"RESULTS For the entire group, the peak hazard of recurrence occurred in the interval of 1 to 2 years. The hazard decreased consistently in the interval of 2 to 5 years. Beyond 5 years, the hazard of recurrence decreased very, very slowly through year 12. The average hazard of recurrence between years 5 and 12 for the entire population was 4.3% per year. The pattern of a peak hazard of recurrence during the first 5 years with a slowly decreasing hazard of recurrence beyond 5 years was also observed to varying degrees in most subsets. Higher risk subsets such as patients with more than three nodes positive had a higher hazard of recurrence at all time intervals, while lower risk subsets such as patients with negative nodes had a lower hazard of recurrence in all time periods."
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Ruthbru's graph points out why hormonal and Her2 status can skew survival and recurrence data, and make it problematic to make generalizations regarding early stage breast cancer. Triple negative cancer and Her2+ cancer have a tendency to recur early, but TN rarely recurs after five years. ER+ is less responsive to chemo and can recur after a number of years. Some recurrence is not really a return of cancer, but a failure to have correctly diagnosed and staged a more advanced cancer initially.
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Right, there are too many variables for a 'one size fits all' statement....but I think it is true to say that the farther out you are from whatever your diagnosis was, the less chance there is that you will have a recurrence.... of course, each individual's own personal chance of recurrence at any point is either 100% or it is 0.
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ruthbru - absolutely correct. I think it can be alternately optimistic or pessimistic, and not inclusive of the details of each of our diagnosis as individuals, to try to predict this - and ultimately it really is 0% or 100%.
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Kayce - according to my ONC it does. I took 1200mg of calcium and still do and still exercising as much as I can then and now so the only difference between my bone density test while on Arimidex and now on Tamoxifen speaks volumes. In fact my ONC said I was out of the "danger zone" for osteoporosis whatever that is. She even said Tamoxifen is doing its job for that issue as well.
Diane
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Ruth - thanks so much for the graph. I did not expect to be seeing it posted so soon. Thank you for taking the time to search for it. I am going to share it with friends who are not on this forum.
I am now a year out and my fear of recurrence is still there. I try to compensate by ignoring some new pains and living life as if I were not a cancer patient.
I have a friend who is 12 years out and every pain brings back the fear of recurrence and runs to the doctors office. And have another friend who immediately after BMX considered herself fully cured and never turned back. I want to feel "cured" but I don't.
Hugs, Nisa
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Well, the thought I go with is; I've done everything medically that was recommended & continue to do everything lifestyle-wise I can (like exercise, watch the weight, limit the alcohol.....although I do cheat on the food part). So....there is pretty much nothing else I CAN do. Either I am going to be okay or I'm not. If I am okay, then I will have wasted a lot of time and energy if I spend time worrying for nothing. And if I am not going to be okay; then I really, really better be out doing all the things I want and need to do RIGHT NOW while I still can!!
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Ruth - I have said before that my goal is "to be you" one day and not only because I admire your incredible discipline and commitment to treatment even 7 years post diagnosis but especially for what you offer to the "newbies" around here. One day I hope to be able to offer your very pragmatic view -which contains important truths- to others on this forum. For now, when I hear of others' fears I can only whisper "me too."
Hugs, Nisa
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Well, I don't want to make it sound like it was an attitude I had from the start or anything; I remember wondering if I should buy an expensive piece of exercise equipment (expensive to me, anyway) because what if I dropped dead before I got enough use out of it to justify the cost? And being very scared to buy airplane tickets 6 months ahead of time for my niece's wedding, because maybe making long term plans would tempt fate.......but the best things to do are to buy the equipment, order the tickets, do the stuff you've always wanted to do but haven't taken time to do, or were too busy/scared/whatever to do (really, what is the worst that can happen if you dye your hair purple?)....it makes life fun again & at the same time is kind of like revenge on the cancer!
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Hi Nissa,
The infusion is Zometa or Boniva, its for strengthening her bones.
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Ruthbru,
Thanks for explanation of weight bearing exercises. We have been walking each night for about an hour. Its doing us both good!
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Ruth - that is so inspiring...thanks for posting! I will try to keep that thought!
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jd - I do the Zometa, too. First shot was pretty rough, but the SE's went away after a day. I have osteoarthritis and have been on AIs for almost a year. Couldn't handle Arimidex due to crippling joint pain. Aromasin works way better for me.
Kind of wondering how they will track bone loss. My clinic follows ASCO - no scans or bloodwork guideline. Hmmm...
Congrats on your wife's first checkup!
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bc101 - bone density scans are different than diagnostic bone scans, bone density scans do just what their name implies, while bone scans are nuclear tests, on a different piece of equipment, that take a close look at bones for fractures or lesions, but do not measure density. DEXA scans for bone density would not fall under the ASCO guidelines for treatment, they are routine scans every post-menopausal woman should have, like a mammo, regardless of a breast cancer diagnosis. I had them done at several year intervals following hyst/ooph and the one done just prior to diagnosis allowed a pre-treatment baseline. I had one done after chemo and 6 months of Femara that showed marked loss, so I was started on Prolia. I have now reversed the loss to a normal measurement, not even osteopenic.
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Special K - Wow, that's great! Do you think Prolia helped reverse bone loss for you? Or did you take lots of calcium supplements? I take supplements intermittently - I'm not great about remembering to take them even though I know I need to. I try to get my calcium from food or milk as much as I can, but that's almost impossible to keep track of. And plus they say dairy is bad for ER+ cancer. I know it's not good to take too MUCH calcium from supplements. Any ideas on that?
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bc101 - yes, the Prolia is what changed the tide. I do take calcium and vitamin D supplements, but I was taking those during the phase of worsening density too. I don't eat dairy at all so calcium supplementation is necessary for that as well as being required by my onc while I am on Prolia. Here are some calcium rich foods that i eat - broccoli, oranges, wild caught salmon, fortified cereals, kale, bok choy, white beans, almonds, chia seeds, both coconut and almond milk, and spinach. I take a number of other supplements so I have an old lady 7 days of the week pill case to help me remember, lol!
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For those taking an AI, of the three, which is known for having the worst SE's. I am 1 week post hysto/ooph and still unsure about what I want to do in terms of switching or not. I am thinking that I want to stay on the tamoxifen for a few yrs and then switch off to the AI. I've read several studies stating the benefit of taking both for post menopausal women. I meet with my MO on Friday. I've been off of the tamoxifen per his instruction since 5 days before the surgery.
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When I had my ooph procedure, I continued to take Tamoxifen for additional 3 months before switching to Femara. I was pre-menopause when I started chemo - still regular lite periods but chemo did seem to shut me down. During radiation treatments I felt like they were trying to return - strong PMS symptoms. I believe the delay after ooph procedure in my case was to allow the hormones to decrease before starting an AI. For me, I had a worse time on Tamoxifen with severe insomnia, PMS symptoms, and depression. I tolerate the body aches on AI better than Tamox. Everyone is different in how their body is effected.
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Lonnie - they all have some similar SE and it appears to be an individualized response - there is no one that is better than another from that standpoint. It is often a case of which do you do best with. They can all cause joint pain, insomnia, and some experience mood swings, hot flashes, etc., but not everyone experiences this. I have found that daily exercise and taking the med at night to work for me and I have very mild joint aches - no real problem. Something important to note also - with generic versions of these drugs by different manufacturers, you can have differing SE within the same drug because the manufacturers use different dyes and fillers. I have had fewer SE on one particular maker of Femara than another, so if you find one you are good with try to stay with that maker. Sometimes your pharmacy just carries whatever formulary is available from their supplier, but there are definitely differences. My pharmacy is able to continue to supply me with a specific one as long as I give them a few days notice before my refill.
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I'm with cp- I tolerated Arimidex a lot better than Tamoxifen. My ONC switched me because I developed osteoporosis and Arimidex attacks the bones. Gotta say though since I've been on Tamox my bone numbers have improved dramatically do I will live with the brutal SEs.
Diane
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Thanks for your replies. Decisions, decisions..
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Still don't get all the acronyms. ooph? I start chemo tomorrow. My stomach is in knots. My incision from my BMX end of April is healed and my port incision is well on the way. Sad I finally feel more fit and now face feeling sick. Should I eat breakfast? Someone said eat ice chips. So stressed over this like I wasn't with the surgery.
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Missingmercury, I will be thinking about you tomorrow. The idea of having chemo is worse than actually being there. Do eat breakfast and bring some snacks with you. Also drink a lot of water. I mean before during and after chemo. I fact drink, drink, drink throughout chemo. It will make the side effects less severe and shorter in duration. Also if you are getting cytoxin, it could give you a headache so be prepared with David or alieve.
Good luck, I will be thinking of you.
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Missing, ditto everything smrlvr said. I ate scrambled eggs and toast for breakfast along with a bottle of water. I ate a peanut butter sandwich, some pretzels, and drank two bottles of water during chemo. I also drank more water the rest of the day. I think it really helped to flush it out quickly. Good luck!!
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Thank you so much. I will make sure to take some water and snacks, and eat breakfast. They are starting me off with A/C?
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Yep, eat some breakfast and drink tons of water before, during & after. Take your anti-nausea meds exactly as directed. I did AC too....I felt kind of like I had the flu the first couple days afterward (but never threw up or anything) and started feeling better after that....just sort of 'off'. Are you doing neulasta shots? If so Claritin (not Claritin D) can help with the achiness. Best of luck......thinking about it ahead of time is truly the worst part....once you start, you just do it and get it over with.
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I'm also getting AC. My only side effect was fatigue. It hit me day 3 (day 1 infusion day). I'm really hoping my second treatment next week will be the same. Try not to be too nervous. I know it's tough. I kept waiting for something bad to happen but it didn't!
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Exactly take anti-nausea meds as directed. Emend worked great for me. Ditto - drink lots of fluids as it helps flush your kidneys. Best wishes!
(ooph = oophorectomy removal of ovaries and tubes)
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If you do take Claritin be sure to start it at least an hour prior to the Neulasta injection. Continue it for at least several days, but be sure to ask your onc first. Many on AC get extra fluids the next day, or at some point in the following few days. This helps with nausea and maintaining hydration. If your prescribed anti-nausea meds don't work tell your onc immediately, there are several options and they can find something that will work for you. Because Adriamycin is a vesicant and can harm veins and/or skin, some use a squirt bottle to use on your skin in the bathroom, or non-alcohol baby wipes. This is another reason to drink fluids to dilute and flish the srig out of your system, not just water, but Gatorade, juice, soup, tea, etc. Good luck!
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