MIDDLE-AGED WOMEN 40-60ish
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heartnsoul my scans were clear, woohoo. I see my MO tomorrow for my 3 month visit and my zometa treatment. Guess we will talk about this darn pancreatitis I have been having. The meds to seem to be working but really hope I can get things back to normal and get off of them. But staying on the meds is better than becoming diabetic which can happen if it stays out of control and I have diabetes on both sides of my family. However everyone that has had diabetes was overweight and did not exercise. I was really suprised that I had the CT scans on Monday and got my results on Wed with a holiday in there. Oh and glad you enjoyed the corn casserole.
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Marlegal,
After debating about it in my head, I ordered the caps. I've lost my hair once before 18 years ago when I went through chemo and rad for Hodgkins. I hated it then, so I'm going with the theory that this might hopefully help. If it doesn't, I'll return them and go buuy a wig. No harm no foul. (Or whatever that saying is.) You are right. You wear them for an hour before treatment, and for about 4 hours after treatment.... but yes, you do wear them during treaments as well. My PS said today that he has had several (I think he said 5) patients who have used them and they all raved about how well they worked. So.... I'm going into this with my eues open and my fingers crossed. I'll keep you posted. Chemo starts Wednesday. I should know within 2-3 weeks if they are going to be working. If not..... I'll be having a wig party. (A bunch of GF's going with me to lunch and then picking out a wig. LOL!) I can only hope for the best.
Sherry, I am SO SO happy for you that your scans were clear! YAY! Congrats!!!
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Sherry - woohoo! So glad the scans are good and that you got them back so fast! I hate waiting. I hope you can get off the meds, too. Medicine is a double-edged sword. Gotta take it, don't want to...
Amrdbit - hope the cold caps work for you. If not, sounds like a good back-up plan! Good luck with your chemo Wednesday. -
Sherry, clear scans - that is so wonderful!
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Sherryc, Woohoo for you! Let us know how your OV goes tomorrow.
hns76, My oldest friends bro' had the same chemo I have for C/C and he was one who had NO side effects. He was Stage IV, had chemo before and after surgery and he's NED now. I know this chemo CAN do the job.
My husband made an interesting comment about my now having 2 separate breaks from chemo. I am a little freaked out because I think my results may not be the best since I had to stop twice during the regimen, but he said, "Who knows, maybe taking the small breaks will actually maximize the effects? They do the clinical trials with one chemo regimen, maybe a few variations, so that is all they can report on. Just because your pattern is not in any particular study doesn't automatically mean it will have lesser effect. Plus, individual response can play a big part." I did feel relief to hear that. I'm making my own route thru' this and taking a less travelled path but may get out of the woods yet. I was used to living with the B/C question mark, so now my question mark is a little larger and I realize I am back in the "no guarantees territory" so it's not all that different really.
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E, I agree with your husband's comment.
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Amrdbit/Eli: hope I don't offend but damn.
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Juneau...where was that book when I needed it? LOL
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jbugg, LOL! If only the doc doing my c-scope had asked the same question at the time?
Things in the "just chemo" areas of my body already settling down. Things in the rads + chemo area of my body still stinging/churning/going haywire. My challenge this week just sprang up. Son sneezing with cold. My WBC dropped to 2.5 last Mon. I don't need the setback of catching his virus so we are being careful to stay apart and handwashing constantly.
hns76, Even I am starting to get antsy about your body scan results. Want me to call? I've been getting a lot done by phone lately since I am avoiding the sneezing public these days.
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Eli, I'm positive that your team is blood related to my team, but then...that would mean I've met my whole team...I still haven't met my oncologist. I start taxol and hercepton on Monday, port to be installed on Tuesday....Appt. with onco might be on the 16th but they'll confirm, all my APPTS have been changed for absolutely everything 3 times since dec. for all tests.
I'm having a hard time adjusting ladies so not to be a neg I'm not really participating as I'm still soooooooo scared and pissed at my diagnosis. I have not had 1 piece of good news since my botched core biopsy in sept. -
Sherry, I am sooooo happy about your scans!!!! And yes, I hope the pancreas issues can be worked out to your benefit too.
Amrdbit, go for it (with the caps!) I'd love to hear a success story in any way, shape or form. And sounds like you have a great plan for a wig party, if that becomes necessary. Nothing like having great family or friends to help us make the best of things. Don't know what I would have done without mine 7 yrs ago.
Eli, good points by hub. Amazing how occasionally they come through with gems of insight, isn't it? If anyone can make their own path, it's you buddy, I have no doubt about that at all.
JoCanuck ... how or why are you starting chemo before port? Or is that a dangerous question??? As for being negative and not participating, please don't feel that way. Even if you just post a comment that you feel like crap, that's why we're all here. And if you stop in and just find some amusing comments that might make you smile for a minute, so much the better. I don't remember where your mets are or how they were found, mind telling me again? Hugs.
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Hey Marlegal! How are you?
I copied this from my bio, sort of a rant, they couldn't schedule me, this is the 3rd change and it can't wait anymore, they offered next week but my right side is hurting so I figure there's action there so I'm taking what's available according to their schedule and she said they would do the taxol and hercepton slow drip 6 hours to minimize vein trauma....
Jeez, I'm gonna depress everybody here! Sorry
"Dec 21/12
Not so good news, my whole left breast was full of cancer, 5 lesions with all kinds of stuff, 10 pages worth, vascular, very aggressive, micro & macro invasion...must be an army in there!! Told them it hurt like hell, they said "nope BC doesn't hurt". I'm really pissed at my breast surgeon as she flat out lied to hubby and I...on follow up Monday she blithely said....maybe 1 lesion or nodule..was shown on my irradiated liver cat scan. On Wed 2days later with my girlfriend there (no modesty anymore!) I, of course, pushed for more info, like...I want this excess tissue removed from my boob etc. while she was draining my incision, when can I book etc....she literally tried to avoid me then told me I had much bigger problems...HUH...told me that my liver lit up the scan and I was full of lesions! So that's how I found out I was stage 4, liver cancer....
Why didn't she tell me that 2 freaking days ago when hubby was with me!!! So, the lying begins...you'd think at 61, my own business for 30 yrs, married for 42yrs, 1 daughter, 2 grandchildren, that I could handle a truth??????
My liver scan shows 7 lesions on both sides of my liver approx. 2 cm each, bone scan is being re-done as there's funny stuff around my collar bone & neck, hopefully the chemo will halt or shrink liver lesions...I'm ER & PR NEG, HER2 +
ALL the docs said it was nothing, extremely tiny, don't worry, poo poo, you could wait a year for treatment and it wouldn't change....but, my gut said NO!!
So, my course of treatment is to contain, shrink, manage my cancer till I don't respond to drugs..obviously I didn't drink or party enough!
There's always the possibilty of newer more powerful drugs every day!" -
JoC1951, Yes, I noticed you have not posted in a while. First of all, not everyone approaches their cancer in the same way. I have a LOT of rage about mine and I refuse to keep it in. Also, I tend to come at challenges from a negative standpoint and it helps me get my bearings to then move into a more positive stance when I am ready, so don't you worry ONE BIT that you will be judged for negativity. Not here you won't. Not by me.
Also, I don't think a positive attitude confers any special healing benefits on people. It's o.k. if others feel that it does. It's one of those opinion things. That does not mean I won't try to help someone get to a more positive place, because I do think life just feels better when you are in a positive place. Cancer is not a punishment. Beating it is not a reward for some and not others. Cancer is random. Life is not fair. You are entitled to any honest feeling that you have about that.
In the words of the Great Sages: "The wheel in the sky keeps on turnin' I don't know where I'll be tomorrow." I never really knew if that refered to a prayer wheel, a roulette wheel, circle of life, or what. Then again, what did they know? Lovin' Touchin' Squeezin'? Ahahaha!
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I love you Eli! Xoxox
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JoC1951, I don't even know how to respond to what you have been thru'. Are you sure that was the BS and not some janitor who just wandered in? Geez, six hour infusion thru' a vein. I'm hurting for you..my vein and my butt, just to be sitting there that long. Arm yourself with reading, portable tunes, snacks. I applaud you for getting the show on the road, even tho' it was a difficult decision. How dare they leave you in pain like that! We are all jumpin into your pocket on Monday. You can be sure of that.
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I too will not judge any feelings either..........
A 15 year research study was done on positivity in the belief it would prove that being positive affected prognosis and survival outcome BUT they found that people who "authentically expressed all their emotions" actually did a lot better as did people who meditated (still working on that one) and exercised or went for a 30 minute walk at least 5 times a week......
This all makes sense to me - I find the pressure to be positive another burden (as if we did not have enough) and I refuse to give myself another hassle! In fact people saying "be positive" or "at least you´re still alive" are guaraneed to press my irritable button very fast!!!
I would be really pissed at your doctors too........hope you have lots of good books to read.....and some treats...
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Jo and Elimar, you are both in my thoughts and prayers. I can not imagine going through the journey twice and with crack pot doctors on top of it.
Lily55, I agree with you on the people that say stupid stuff like at least your still alive, or your new boobs will be better than your old ones....really I liked my old ones, and my old once fit self....
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JoC - sending ((hugs)) to you. Glad that things are finally getting underway for you. It's been a rough go so far - hoping that tx will kick some cancer ass! I'm there in your pocket on Monday for sure.
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Team JoC here too, fingers and toes crossed....
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JoC: Add my wishes for a successful treatment, and my extreme disappointment with your medical team. Sheesh! Cancer is hard enough without incompetent medical help.
Sherry: Yippee! Clean scans are my favorite kind of scans.
Eli: I agree with you that an authentic reaction to challenges is the healthiest response. Let's face it, cancer sucks big time! I know meditation is supposed to be good for you, but I've tried for years and it seems impossible for me. I've decided that trying to meditate is helpful, so I keep trying.
All: I'm trying the apple cider vinegar regime, but so far (3 days) I haven't been impressed. I've decided to give it a full week, because I hate breaking into a sweat all the time. I'm not optimistic, but I am hopeful...
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I know of the studies about positivity and better resulting outcome, but remain skeptical (anyone surprised?) because I wonder if the result is the chicken or the egg? Perhaps the persons that are able to be more positive are getting an unconscious type of biofeedback from their ailing bodies that recovery is more possible (regardless what prognosis the docs give.) Maybe the ones who aren't very positive are just not feeling it. But like I said, it would be complex biofeedback communication, not something a machine could measure or something that the person even had an awareness of.
My final thought is that, while I am not fully convinced that positivite attitude really causes positive outcomes; I still say being positive doesn't hurt either.
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eli - that's an interesting thought, that the more positive people may be getting good biofeedback... I hope it's true! I am largely a guardedly positive person. I tend to "prepare for the worst, while expecting and hoping for the best." I don't go around blowing sunshine, but I don't think wallowing in gloom is healthy either. I try to eat right and exercise, and I think that helps my attitude, whereas if I were "Gloomy Gertrude" expecting the worst I suspect I'd lay around and eat and feel and fare worse for having done so. I try to acknowledge my feelings, like "I am really pissed about the LE" but I do try to keep things in proportion, "It's certainly not a bad as it could be...a nuisance, sure, but not a tragedy."
When they said "cancer" back in Feb of last year I did spend a few days in a tailspin, but I've been working to stay sane and in control since then because I can't be any other way. But I was lucky. (afik) The cancer, while large and multifocal shows no sign of having escaped my breast and after the delays in dx and treatment I will count that as a hugely lucky break, while trying not to dwell on the hideous bad luck of getting cancer at all.
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Strangely enough, each one of my cancers could have begun its growth roughly at the time when I lost a perent. Did my profound sadness cause the cancer to begin growing? Wouldn't that be bizarre? In my next life, I will just have to have immortal parents then.
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JoC1951-
I'm sending virtual hugs along with positive vibes along with all of our sisters. We will try to remain positive for you through this, and then when, and if you feel like it, you can too. But we certainly understand if you don't feel it, especially right now as you face your fears from your latest diagnosis.I am curious about how a 6+ cm tumor was missed back in September? Or did it grow at an alarming rate? I am not one to focus on the past, but I think that your local paper might want to do a personal BC story featuring your experience. You could honestly reveal what your path has been and possibly inspire others to be more aware and even improve the medical response. I know the timing of this suggestion sucks, and that not all undergoing what you are right now would be "up" for something like this, but if you're like me, having a voice and being heard may go a long way to changing a lot of things, personally and socially.
Before having children, I was very protective about showing others my body and even sharing much of myself in many ways. The birth of my first daughter changed that, when the nurses lost her heartbeat, the doctor was still on the freeway, and they had me butt naked on all fours trying to improve things, with doors wide open for all to see. And since then, most recently with BC, when a PS newbie (who looked about 16) joined my PS to get a good look at me and view me getting marked up pre-surgery, not to mention all the different people doing my fills, etc. Now I'll strip for anyone (kidding)! I mention that because it is pretty amazing how "life" changes one's perspective. We all have bodies and experiences, some pretty, some not so much. I got so much gratification when I campaigned for a nipple and areola sparing mastectomy (not done in my local hospital before) and changed the nurses protocol to 50ccs for expander fills (had been 30 max for four years running, except that the PS could do whatever amount he and the patient wanted when he was injecting the saline). Seems like a small thing, but nurses were thanking me and my BS told me after surgery that several patients are now asking for NSMs (because the nurses are telling them about it).
I hope I don't sound like I'm tooting my own horn; I shared this because it gave me a lot of pride to know that my experience is possibly helping others improve theirs.
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Eli-
Just got to say, thank GOD the headdresses shown in your picture of middle age women are no longer in vogue. Although I guess you could hide a lot of goodies in there!
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JoCanuck--it is very normal to be pissed, angry, scared, sad, and generally negative when newly diagnosed with the beast. No worries about expressing any of that, we've been there and understand. And we still go through those negative feelings, too, from time to time even years later. So participate all you want, say whatever you want or need to say, it's safe here. OMG, I just read your update. You were so FAILED by the medical system. Has any one of them had the common decency to offer you an apology? Or any acknowledgement of how you have been screwed over? And you aren't depressing me, any way, I am so, so very angry for you! Give me the name and addresses of your docs and I will file complaints for you. This was malpractice. Someone should pay, dearly, for what's been done to you and how you've been treated.
While I try not to wallow in negativeness, I really resent being told that I am wrong when I feel anger or sadness about losing 3 years of my life to ongoing pain, multiple surgeries, the total destruction of my credit rating and everything else I went through. I know that's not how I'm supposed to have breast cancer. Tough $Hi!!. Who is anyone to tell ME how to have any condition or disease??? Ahhh, I really didn't mean to get back up on that soap box again.
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They found that it was not being positive that improved outcome but authentic expression of emotion, so that it was free flowing of all emotion that made a difference - I think it is a biofeedback type thing as it means there is no emotional stress or repressed feelings adding to systemic stress - interestingly absolutely EVERYONE I have been in touch with who has cancer had a very stressful period in their lives for a few years before diagnosis, so stress reduction is also recommended for us.........
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I think I'll still in someone's pocket who hasn't posted results...or was that Sherry? You can move me into the next pocket when ready!
As for gaps between chemo, elimar, that's how it's normally done, so I can't see it hurting too much...they must have figured out that constant chemo is BETTER but any chemo would be a good thing, you'd think.
Dreams!! I am a VIVID dreamer. My blood pressure meds help that. I also am a night flyer. I am SO blessed with all this! As i go to sleep at night I am actually excited to see what I'm going to dream!! My dreams are vivid enough that I touch and feel, smell, taste and do it all..and I mean all!!! I will have at least one vivid dream a night and sometimes two. I remember them very well. Sometimes I shop in my sleep too which is very cool. I also create art which is also very cool! I'm lucky for this as I spend so much time in bed on my back and can drift in and out of sleep quickly and well. I read every night but don't tend to dream about what I read. I do dream about work (still!) which is understandable. The sex is always amazing, too. Sometimes I have breasts and sometimes I don't. I also dream deeply plotted dreams and know if I wrote them down they'd be interesting to others. So I can talk dreams all night long! hehehehehe
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Jo good luck with your treatments. Vent all you want here, I'd be pissed if I were you.
Had my MO appt and my zometa treatment yesterday. I finally got to move to 6 month appts, woohoo!!! He will follow up on my pancreas levels in a month and thinks I may be able to get off the meds if I behave. He thinks my reconstruction looks great. I laugh because he is such a nerd but I love him for a MO.
I also asked my MO about the 10 year tamoxifen study. That has been a hot topic since the San Antonio Breast Symposium in December. He said that it has not been published in the medical journal yet. He said it is finished and was presented in San Antonio but only bits and pieces are coming out. It takes 1-2 years for it to be published with all the details. He thinks it is a great drug with Lot's of added benefits if it can be tolerated. He said for years he has treated young pre menopausal node positive women with 10 years of tamox. He has always felt it gave added benefit to the really young. He would not commit to what he will want for me when my 5 years is up but will probably want an additional 5 years of something. Depending on this study he will decided on tamox or AI but as he said that is three years from now and research changes everyday. He is always full of information just wanted to share with you ladies.
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I'm in for the pocket party Jo 😜
On the topic of positive attitude I go with the 'just don't hold it in' group. For me, I've pretty much always been a glass half full girl, so when I was going through treatment, I just tried to keep my head in as good a place as possible because that was how I always did things. If I had a crappy day though, I let everyone around me know that too!
Helping daughter today with baby and dog while her hub is away. Twist my arm Right now she is napping and baby is making adorable sounds in his sleep. I am grateful for this moment in time. My wish is for all reading this to have one moment in their day that feels good. If you get two, that's a bonus!
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