Calling all TNs
Comments
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Thank you my dear Kathy. I am so glad to see your post. It broke my heart that our little lady who had so much compassion for everyone, was so full of knowledge and helped us so much, was so very caring, was happy and so contented with her life, who just wanted to live and had so much time for all of us, to be taken like she was. I pray that she didn't suffer with pain and that God is taking really good care of her.
With the topic of chemo or no chemo. For me personally I believe that what is in store for us is what we will get and nothing or nobody is going to change that. All the worry and anguish is so pointless and won't help us at all, yet I still worry because I must be the worlds greatest worrier. Only one knows when its our time so that's why we should live for today because we don't know what is around the corner, hopefully many more years to come.
Keep posting Kath cause I miss you and all the ladies on here.0 -
Dont post much but read lots.
Kathy & Annie - both of you are right (IMHO). Its a crapshoot. So yes, live and love life every moment of the day. Even the crappy parts - they make you appreciate the good times all the more.
Happy hump day - have you seen the Geico Camel? For those of you who haven't hope this link works. If this dont make you smile, chuckle or laugh - check for a pulse.0 -
Tiff...I went every 3 months for 3 years now I'm at every 6 months...so your onc is right in line..
On the acupuncture thing..I was just figuring out that my insurance paid for it and was signing up to go but I only had one more chemo and neulasta shot to go so I let it go....looking back through I wish I would have started it right away with the first chemo and shot./
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thank you Titan for your reply on acupuncture. There is a kind of Chinese herb stick that I was given to use also said will help the immunity. I will see and repot. In China, many of us use a foot bath for relax you're whole body. Amazon has many choices just in case anybody interested. If you do not want to buy packed foot soak, my acupuncturist says you can boil cinnamon and sliced ginger together and use that to soak the feet.0 -
Kathy: Not cruel information at all... your post, so sensitively written, does a great service to the members of this community and honours our dear Luv's choices and journey. Thank you for that. Thank you too for your friendship and support of Luv and carrying our best wishes to her in her final days.0 -
Kathryn,
I was just thinking how anxiety provoking the current state of prediction of outcomes is in medical science. Then I read your post. You are right on! We take in the incomplete prognostic info and make our decisions based on that. Crap shoot is right.
Only thing to do is make decisions rationally, no self-blame for decisions we make, and live life fully! Everyone has just this day. Tomorrows are unknown for everyone.
Hugs,
Peggy0 -
Tazzy guess what day it is here, the day before Friday yay. That really made me laugh. My pulse is working fine!0 -
Annie - of course you are a day ahead of us here. Still whatever day you watch it - never fails to give me a chuckle.0 -
I remember asking my onc before/during/after treatment how do I know that the chemo worked.....he just said we don't know...we just don't know....so yeah..its a crapshoot....nice posts here...exactly the truth....0 -
Titan: I remember through my treatment my DH asked my MO "so how do you know the cancer hasn't gone beyond the breast and isn't in her big toe?". She said exactly the same as yours "we dont know".0 -
Yep. I laugh at that camel commercial everytime.Thanks to all the "posters' Very sensitive and informative chat. I like it.
Thinking of Michelle and her family tonight. Her light will always shine here.
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Navy...we can behave ourselves when we want to...lol...this cancer stuff can drive us all over the edge sometimes...thanks for "righting the ship"......0 -
Titan, I asked my MO how do we know whether chemo worked or not. He says: I only know if I fail. I asked again: so it might be better to do chemo first then lumpectomy so if the chemo worked, the tumor will shrink, right? He agreed on if the tumors shrink means the chemo works, but think we are doing the best now.0 -
Jianchi,
My onc said it made no difference in effective treatment whether you have chemo before or after. I chose before because I wanted to know if the cancer shrank. I had the kind of tumors (4) that could not be felt. They were strait ions rather than lumps.
I had mixed feelings when my post chemo post mastectomy results came back. The chemo had killed over 80 per cent of the cancer cells biopsied before and after. That was good news but not the Holy Grail of this protocol--a pathologically complete result.
So, there was some disappointment and worry there because of data I wouldn't have had if I had done surgery first. But I'm one of those people who do better with complete info even if the info is not wholly positive.
So, in the end, it's a personal decision, according to my onc. I hate all the uncertainty still in cancer treatment. I thought we'd be further along in the "war on cancer"!
Hugs,
Peggy0 -
Peggy - thank u for the reply. I had lumpectomy already as they thought it was very likely to be B9 so there is no way back for me. I guess I will have to believe the chemo will kill all the cancer cells in my body if there is any ( I had a clear margin lumpectomy, clear lymph nodes, and Breast MRI showed no other suspecious area).
I tried yoga yesterday provided by my cancer treatment provider for breast cancer patients. There were 5 students including me. The instructor was nice and impressive. She looks so fit. At the end, she said that she will have surgery soon so will send us info about the sub instructor. Until then I found out she is a breast cancer patient as well (Stage IV)!0 -
Kathy's surgery was a smashing success! No surprises! No complications! Minimal blood loss. Doc saw no signs of cancer anywhere (but still needs to be confirmed by lab). Bilateral Salpingo oophorectomy and hysterectomy using Da Vinci robot. She spent the night in ICU (ICU is just the doc's preference. He told us she would be there before the operation) and is home and resting. Only real discomfort is cramping. Next stop, reconstruction exchange surgery. Then by the grace of God this will all hopefully be in the rear view mirror. Lots to be thankful for this Thanksgiving. Can't wait for New Year's Eve to kiss this year goodbye!0 -
ALH Thanks for sharing the good news about Kathy. I know you'll be taking good care of her while she is recovering. J0 -
ALH great news about Kathy. Another down and one to go. Have a great thanksgiving.0 -
To Michelle's family. May she be at peace & no pain in God's kingdom.
ALH. So happy for Kathy's good news. We all need some hope for this mess.
I haven't posted for a bit but been reading frequently. I told you all about my having to stop chemo because of allergies & neutropenic fever. So my choices were slim. Try the B-17 route which of course is not legal in US. But because of same problem with allergies and this is megadoses of vitamins along with the B-17 my body can't take that either. I don't know if the B-17 caused it (the routine of with the B-17) or if it is just a freak coincidence but I have a knot in the area of stomach, liver, pancreas & spleen area that is painful. Very weak and sleeping a lot. Called my MO can't see her till Monday it is my regular appointment anyway.
So I agree this is a crap shoot. My choices soooo limited.
I need all your prayers & good wishes as I am sure I am going down the PET scan route again.
Take care ladies. Keep fighting.
Marsha0 -
Marsha,
I am so sorry for all the complications in treatment you've been through! Treatment of BC is difficult enough without having allergies to the chemo and then having to opt for something else that also caused more problems. I was able to finish chemo but was so sick for the first 2 months all I could do was lay on the couch.
Are you going to get radiation once your current health problems are cleared?
I know women doing well with surgery and radiation and no chemo. Your tumor is. Very small.
A healthy diet and exercise will go a long way too.
BTW, I love your yoga pose! I post a lot. And would like if you posted more often. It's nice to know how people are doing and your unique experiences could help other women. In any case good to hear from you today!
Hugs,
Peggy0 -
I'm doing chemo prior to bilateral mastectomy,I had a breast ultrasound yesterday and one part of the tumor is gone (only biopsy clip visible), the other is much smaller. I had 3 nodes visible on ultrasound and now they can only see 2. So chemo appears to be working after only 2 A/C treatments. #3 is tomorrow so hopefully it will continue to do it's job. At least doing chemo prior to surgery allows you to see if it is working.0 -
Lookingforward66-sending prayers and hugs your way...
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I haven't been on the boards in a couple of weeks. I am so sorry to hear about losing another BC sister. Michelle was a great lady and always willing to listen and give advice. More than once she did this for me. I hate cancer! RIP Michelle!0 -
Hi everyone!
I had my 3 month checkup today and it started out fine. First had a bone density scan, then a chest xray, of course it was a young male tech and I had to take my bra/boobs off. I felt very insecure but he was of course professional ( I still had on my tee shirt), then on to labs, had to wait quite awhile. Then to my mo's office, which I was 15 minutes early. This is the second time to see her, my other mo retired. My last mo I always had to wait a minimum of 1 hour, usually 3 to 4 hours for my appointment, no joke he consistently ran that late. Well, today after waiting 40 minutes plus the 15 minutes from being early, I totally had a panic/anxiety attack. I just did not want to sit in a doctor's office one minute longer, I had it! I asked the receptionist how much longer and he did not know but said it would most likely be awhile. I asked him if he could please just have my doc call or email my xray and lab results and told him I was leaving. And I left. Does anybody's doctor run somewhat on time? I was hopeful with a new doc I would have a chance of having a doc that would at least only be 30 minutes late, but the first time I saw her I had to wait 90 minutes and it is looking like this is an ongoing thing for her too. I really like her but I have way too much anxiety to be waiting in an office for that long. Am I being unreasonable? Should I look for another doc? I loved my last mo, but so many hours I lost sitting in that darn waiting room, I just don't want to continue that pattern. For years I took my dad to his mo appointments, waiting, waiting waiting, and his doc was better about not running hours late, but was usually was at least 30 min late, and now with this being my second time around with cancer I just don't want to spend that much time at appointments. I HATE CANCER! I hate what it has done to me. I hate that it has killed so many of our friends here online and has killed both my parents, my nephew, my best friend, 2 of my aunts and so many others, way before their time. I hate that it is probably going to kill me, but I hate more about how it has forced me into this life revolved around doctor appointments and constant worry about it coming back. I should delete this post, but I feel like many of you will understand.0 -
bak94 - I totally understand your feelings. I was afraid of the same thing: life filled up with doctor appointments and worry about cancer coming back everyday ...0 -
BAK I totally understand it as well. Nothing makes me more mad than waiting in a doctor's waiting room for hours. Every time I go to my Doc she keeps me waiting at least an hour. It brasses me off something rotten. Sure emergencies comes up and that's fair enough but every time!!! Why the hell do they give you a time, what is the point of an "appointment" not only that I think it's really damn rude to keep somebody waiting that is paying you. I hope they do ring you back. The last time I went my appointment was supposedly at 10.00am but I finally got out at 11.50. I don't think you are being unreasonable at all but I think if you like her might be better to stay because some other doctor will only do the same. Yep I get the I hate cancer too. I try not to let it destroy my life and people say forget the 'what if's' but they are always there, some days worse than others. Just keep on going as best you can girl and you will get there.0 -
Thanks, I knew you would understand:)
So, something else has come up. At 9:30 this evening a message came up on my online chart results. It says
"Findings: The lungs are clear. Previously evident linear opacity
overlying the right upper lobe, probably atelectasis, has cleared.
No pleural effusion.
Borderline cardiomegaly is unchanged."
Ok, that sounds good, but NOBODY ever told me I had linear opacity OR borderline cardiomegaly! WTF??? It says it compares to an xray I had March 2012. Why don't I remember that? It must have been when about the time I finished radiation, which was on the left side this time, right side radiation 11 years ago. EVERYONE failed to tell me I have an enlarged heart?! Even though it is borderline, isn't that something I should know? I have had Adriamycin TWICE and they don't seem to think it is important that my heart is enlarged? I am glad is has not changed. Do I need to see a cardiologist? I am tired all the time, tire out very easily, and reading the symptoms of borderline cardiomegaly sounds a lot like what I am going through. I am so frustrated. I tell the docs I am tired, they look at my labs and say but you are doing great, yet nobody sees this and connects it???0 -
Friggin hell BAK. You have every right to have an explanation of anything that shows up on your tests. As far as I know linear opacity is a benign condition and nothing to worry about but with borderline cardiomegaly I would be asking my doctor for a referral to a cardiologist for a CT scan. If he bulks at that I would be reminding him that you have a right to know everything that is going on with your body and that you should have been informed of it by him. I was warned by my Radiaton Oncologist that with radiation it can irritate a small part of the heart and lungs if you have treatment on the left side and it can cause inflammation of those areas. She said they do their very best to avoid those areas but it sometimes happens. It probably won't be anything for you to worry about but hearing that from a cardiologist would be much better and put your mind at ease.0 -
well..now Bak..you have had quite a day...totally sucks you had to wait freaking forever to be seen...I'm with you on leaving....I know that they are busy but sheesh...schedule accordingly not every 15 mins and get behind..but I think that has alot to do with our health care in the United States and pressure on the docs to see as many people as possible...and then when the doc's DO their job they get behind and end up pissing us all off...I am always ticked off having to wait..my time is worth something too...
Agree with cocker on asking for a echocardiogram or something similar...after having all adriamycin you have had I can't believe they haven't checked your heart at some point..duh..even we know that the big A can cause heart issues....
Anyway..hang in there and keep up with the attitude...0 -
Hi All,
I've only posted here a couple times, but I was having a particularly bad day and came here to just read the last couple days of posting on this thread. I'm on #10 of 12 taxol then will have AC before surgery and radiation. I'm been really down about how what at crapshoot it is with TNBC and survival. It's helped me to read this thread today and other people's thoughts about the same thing. It helps me to know that I'm not alone in my fears and frustrations, and all I can do is just keep on keeping on. Most of the time, I can stay somewhat upbeat, but it seems like somewhere around day two or three post chemo, I tend to really crash and get depressed. I've kind of learned that I just need to go to bed and sleep it off or veg out in front of the TV if I can't sleep until the worst of it passes. I hate TNBC.0
