Starting Chemo July 2019
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I am doing well. Pain is being managed with extra strength Tylenol. Sleeping a lot. Having my sister here helping is a huge help. As is my adjustable bed.
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fairydragonfly
😊😁😊😁😊😁😊👍🏻👍🏻👍🏻👍🏻👍🏻
Now that’s how you recover! I’m jealous! I would love to have my sisters (and an adjustable bed)!That smile is fantastic!
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You look great Fairy dragon . Very healthy ! Your hair is really coming in! Thanks for the update!
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deanders YES it was me and the spot on my arm. OMG I want you to know it still hurts the very same as if I just had my surgery and that was 12/5 😳😳. They upped the neurotin to 200 mg 3 times a days and it didn’t touch it. It’s weird because it’s numb but I still feel at the same time and it burns like hell. If I blew on it it hurts. And the worst part is it’s on my forearm so everything touches it. Nobody can say what it is other than my chiropractor thinks it’s neuropathy and that when they did my surgery they must have aggravated a nerve 🤷🏼♀️🤷🏼♀️ So if you find anything that helps definitely let me know. I’m glad you’re up and doing good! My hair is growing evenly and it may have to do with the product I posted about a while ago. I decided what the hell it can’t make me worse so I use the shampoo and the spray. It’s a lil expensive but i got it and have been using it for a while. I wash my hair every other day and then spray it.
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Hi all, this is my third attempt at this post - foiled by slipped fingers, the need to look something up and bad luck! Anyway, those of you recovering from surgery, getting radiation and further chemotherapy are very brave. And what a great job you're doing! I would think you all feel a bit like you're in purgatory for the duration. 😉 Hang in there and keep peddling 🚴🏼- you'll get to coast on the way to the way down the hill! 🏆😋
I'm having some difficulties healing from the UX and reconstruction. Though I believe those are due mostly to my personal idiosyncrasies.
Not to put a damper on the proceedings, but I really don't have any idea what happens next except yearly ultrasounds and mammograms. I never had a PET or CT scan to look for metastasis. I know that cancer like mine (ER/PR-, HER2+, grade 3) can metastasize to the brain, as well as lungs and liver. Should I be pushing for more diagnostic or screening testing? Am I jumping the gun?
Didn't mean the post to be depressing, just looking for thoughts and ideas.
Thanks,
Diane
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my MO has me coming every 6-8 weeks to do blood work and that’s it And if I felt a pain different than normal I had to let them know. 😳😳 yes I had a really hard time and voiced that I feel we are doing the minimum and this is what he said. First insurance won’t cover PET scans I was told and second at this point if we saw it in a month or 5 it wouldn’t make a difference. Hard to swallow for me because I feel like I’m a bomb waiting to go off. I did all I could do and now I have to sit and wait. So in NC we will only do blood
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I was talking to a friend yesterday about PET scans and how it should be available to everyone who has cancer. I’m talking to my MO about it next week when I go for bloodwork. After radiation is over, I want my dr to order it. My Insurance Co. will send me me a letter stating if it’s approved or denied. I want it in writing
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Melmax, I think that's smart. I'm not sure why a test for cancer presence is more expensive tha treating the damn stuff after they've found it's spread too far to do anything but fight a losing battle. Or wanting to know that you really are clear of cancer when they make that pronouncement over your results.
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It always amazes me how many of the things that others are worrying about are on my mind too. I am trying desperately to figure out how to live beyond this without constantly thinking everything is sinister. I woke up with a headache yesterday and was convinced that it had spread to my brain. And after I got my pathology report that said the cancer had no significant response to the 5 months of chemo - that made me feel even more desperate. And right now i don't really have an MO because mine took a different job at the end of the year and they still haven't assigned me a new one. It would be nice to know who I will be working with moving forward.
One thing that I have been meditating on is this - even people who have never had cancer could be walking around with a time bomb inside. No one knows really. And before we trudged along in this journey we all lived in an unknowing bliss before we were diagnosed. The only difference between everyone else and us is that we know the battle sucks, we've been faced with looking at our mortality and we are now forced to live with the knowledge that it could happen again.
I have yet to put this into motion but the only plan that I can figure is a good one is to strive for a healthier lifestyle that includes more exercise, better foods and adequate rest, keep my appointments with not only my MO but the other yearly checkups that are so important and when they tell me I am fine or healthy - believe them. My sister likes to say "Don't look for tomorrows worries today" which is tough but she has MS which will ultimately make her quality of life suck and if she can live by those words - I should be able to also.
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Saw my Breast Surgeon for 6 month follow up yesterday. She said most likely place for a recurrence would be on the scar. Breast tissue basically exists from your collarbones down and under your arms, you know the drill. she said self exams 1x a month is plenty and try and actually live not live in fear of cancer showing back up. She said if I feel anything weird or have any worry b/4 my next 6 mo appt she can schedule an US. other wise I can get an US at next appt.
And also if have pain somewhere for more than 3 weeks. (hope not to have that happen). Aside form that she said what we know, healthy whole food diet, keep weight in normal range, exercise.
Dvhmouse. I read that if you have a pCR then your likelihood of recurrence is very very low.
It helps me to feel better when I read the breaking news research thread on here- lots of good things are happening in BC research.
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I'm not sure I'm really too worried about recurrence (despite my apparently frantic questions 😉). As you noted, those with pCR and in my case, neoadjuvant chemo that includes both Herceptin and Perjeta, have a recurrence rate below 1%. I’m really lucky to be in that group!
However, I think part of my concern or unease stems from both a lack of communication from some physicians regarding “what's next?" or “what's normal or expected?"; and the lack of insurance coverage for universal testing using modalities that provide the most accurate and useful results.
Granted, it behooves us all to be sure we ask questions, but sometimes we forget, or are rushed in our appointments and don't get to ask, or don't think to ask until some symptom shows up.
I would just like all of us to get good, solid, clear information, as well as follow up that does a better job of alleviating our concerns and reducing our stress while detecting recurrence as early as possible.
Okay, getting off my soapbox now!!
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Saw my Breast Surgeon for 6 month follow up yesterday. She said most likely place for a recurrence would be on the scar. Breast tissue basically exists from your collarbones down and under your arms, you know the drill. she said self exams 1x a month is plenty and try and actually live not live in fear of cancer showing back up. She said if I feel anything weird or have any worry b/4 my next 6 mo appt she can schedule an US. other wise I can get an US at next appt.
And also if have pain somewhere for more than 3 weeks. (hope not to have that happen). Aside form that she said what we know, healthy whole food diet, keep weight in normal range, exercise.
Dvhmouse. I read that if you have a pCR then your likelihood of recurrence is very very low.
It helps me to feel better when I read the breaking news research thread on here- lots of good things are happening in BC research.
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FairyDragon: I hope you feel as good as you look!
Deanders: I am so sorry you are between MOs right now! I hope you land with a good one. I find every little change in this rollercoaster is throwing me off balance, I am sure if one of the key players in my treatment suddenly changed I would really feel at sea. I also try to tell myself "don't borrow trouble" but oh man is it hard! Every ache and pain makes me panic! Gentle internet hugs from afar.0 -
I’m not meaning to sound frantic about reoccurrence or mortality either. I'm just voicing my thoughts about something I believe is important.
I'm using the best Treatment tools they have (chemo, surgery, radiation, and pills) and yet insurance withholds the best early diagnostic tool available due to cost or because they don't think it's necessary?PET would allow me the opportunity to alter my treatment plan NOW if the cancer has spread to other parts of my body, and give me a better fighting chance. In the end, God decides when it's my time to go but I believe he gives us these tools to use if we choose! Insurance should not be a factor. 😊 Again, just my passionate belief and personal opinion. I will not be surprised if my oncologist refuses to even try to get it approved. If he flat out says no I won’t be surprised at all.
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I just want to be here a little while longer to love and help my teenage son as he gets closer to beginning his own independent life. 💜
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I just packed up my wigs and wig stands to put away!
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Melmax, hope I didn’t sound critical. I absolutely did not mean too!
All, my apologies if I distressed anyone with my comments yesterday. That really wasn’t my intention!YeslamaDragon, I’m also getting ready to donate my hats, caps, never used shower-shirt, etc. Ready to say goodbye to all that stuff.
2019whatayear, the research and info available on both this site and news out in the world are really helpful and promising. I’m grateful to have access to it and people to discuss it with
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So next week is going to be full of appointments. I am going to get the last drain out on Tuesday (Yay!) it occurred to me that I've been living with drains for nearly three weeks now. He also is going to put more air in the expander so I am not looking forward to that. I meet with the RO on Wednesday to decide if radiation is the next step. I really want to do everything I can to make sure that I kill all the cancer but I must admit I will be super happy if she says I don't need it. The only thing that has me nervous is that the chemo didn't work, so I don't know what that means for my long term prognosis. I hate to say this but after 6 months of dealing with this - I'm tired of it consuming me. I just started feeling better after chemo when I did the surgery so I am am tired of feeling knocked down. I am not ok with this being my new normal and certainly don't want to let this define me.
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Deanders, here's hoping you don't need radiation and congrats on getting your drains out! That's always such a relief!
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dvhmouse you didn't sound critical at all. I haven't read anything judgy (that ia word, lol). It's good! 😊
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deanders that's been one of the hardest things for me - starting to feel a little better after one phase (chemo) only to feel knocked down again by starting another (surgery), etc.
I'm so glad you're getting that drain out next week!
Side note:I haven't gone on vacation in years and I keep thinking it's time. Maybe this summer I'll take my son to the beach. He graduates high school and we deserve a break after all of our hard work. Suggestions welcome. Lazy river preferred, lol 😁
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So having a great day so far and trying to help a crazy man that came in and I got a itch right top of my chest. Went to scratch and felt a knot. OMG PANIC MODE SET IN. I just about crumbled right there. I told him to hold on and I called my husband. So he tells me to call my PS instead of MO so I sent a message though my chart and called. She called back really quickly and said they feel very confident that it’s like a fat pocket or something from surgery. I just about puked right there in that moment. The fear that went into my entire being is sickening. Lord all I can do is pray to you that you take this fear away from me and that it has no control over my life. I can not live this way nor do I want to. I have apt with PS 2/14 and 2/5 with MO. So I guess I’ll be good and try to relax till then.
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Today
1st Appt. Radiation - went well. 7 out of 33 done.
2nd Appt. Oncologist- bone density scan result is Osteopenia (not Osteoporosis). Nurse is supposed to call me back with T-score. Next, he called in a prescription for Arimidex that I'm supposed to start after Radiation is complete. Not sure about this. Too many horrible side effects, some that can make conditions I already have even worse.
Jjpope1 I completely understand. I keep getting a sore throat. Negative for strep so of course now think it’s throat cancer. Oncologist looked at it today and said could be thrush but he doesn’t want to prescribe anything yet. Thinks it will go away. 🤷♀️ I pray yoanxiety goes away and your upcoming appts bring good news.
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Jjpope man on man that stinks you were going about your day and bam. cancer fear. I think it will be nothing of concern. xoxo
Melmax- I googled the symptoms of throat cancer and based on your sore throat it's not likely at all. Do you have to have radiation boosts? If so, what are boosts?Today was day # 18 so 7 more to go. I'm hanging in there. I'm more tired on the weekend than during the week when I actually have the radiation.
This evening I went with a friend and we made phone calls for a candidate running for local office by us. It was a really good experience, doing something proactive and community based is very life affirming.
Happy Wednesday all!
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Doing better today, just will have to wait and see what they say when I go back ti dr. Found out a friend/coworker has it 😢😢 I feel like at every corner I turn I hear someone else has cancer and it sucks. Like WTH? So I would like your view/input about water and cancer. The past few days this has been coming up as a discussion and it’s making me question our water here and could the chemicals be causing this?
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Quick update. Pathology came back from my mastectomy. No cancer!
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Do you have a well or municipal water? If you have municipal water you should be able to see the water testing for your town either on your town's website or by going to your village/town hall etc. If you have your own well, you can get it testing for not too much $ if you want - diddo work.
In NC they are researching to determine if there is a cancer cluster in Iredell county-- Duke Energy's coal ash disposal is shady at best. Now in that area it is an elevated rate of thyroid cancer for sure. Here is a link:
I know I have read about this issue in NC in a few other places. I think the guardian had a story on it as well (the guardian newspaper in the UK)
In my area (Chicagoland) there are lawsuits pending against a company - in a residential area- that was spewing chemicals they should not have spewed into the air for many years. (leading to elevated rates of cancer) There has been a real push to get the company to stop (politics at local level). I don't live close enough to be in the general zone where the emissions occurred.
My cancer is my dad's fault (BRCA gene) Of course, no dad, no me. LOL
I hope the info helps. I'm thinking about you and for what it is worth I'm pretty sure what you felt will turn out to be nothing bad.
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Woooo hoooooo Fairy dragon! That's what I'm talking about !!! No cancer ! Yes!
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Fairydragonfly 🙌🙌🙏💜🙏💜Terrific news! 😊😊😊😊😊
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Jjpope1 So glad you're feeling better 😊
At first, I thought smoking was the cause because I smoked for years. Then i thought water because I moved very close to a water treatment plant a few years ago and noticed right away the water was different than what I was used to. Having said that I also thought it was asbestos at work and the water at work because three of us have been diagnosed in the past five years. Next I thought it could be chlorine because all three of us have pools. Also, In 2008 we had a coal ash spill in our county so there’s that. 🤔
10 Years before diagnosis I started eating Whole Foods (had my own garden and when needed bought organic) very little meat, very low sugar, lifted weights, and did cardio. My BMI was good. Still got breast cancer.
No one knows what causes cancer why some get it and some don’t. I don't think we ever will.
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