Starting Chemo September 2015; join us!
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Tigre
I don't know that much about the lat flap. I have seen pictures though.What does it do to your lat muscle and isn't there a terrible scar on your back afterwards? I know my Plastic surgeon thought I might have to do this to fix some scarring on my left breast but it was more than I was willing to take on. Also you live in an area where you have more medical choices. I have heard that the new DIEP doesn't take the abdominal muscle. The under pec implant certainly isn't a real boob job like most outsiders think it is.
I guess I need to catch up a bit on your reconstruction journey? Is it that your breast is it a size thing? a damaged skin from radiation thing? or is it that your reconstructed breast is not visually satisfying?
I ask because In my situation my breasts are ok but because I have a broader chest they seem flat to me. I am ok with taking my shirt off in front of my husband and I am pleased with the nipple reconstruction etc but in clothes I just think they are too flat. To fix this I chose to have my insurance send me to a mastectomy shop and purchased some inserts and bras for when I feel I need more vavooom than I got from reconstruction. The inserts are hollowed out so they just add around a cup size. Insurance is required to cover two bras and inserts I think without insurance the bras were $40 each and the inserts were really expensive like over $100
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How are you? I had 3.3 cm and 2 lymph nodes of 16 that had cancer. I didn't do radiation but i am on Xeloda. I am on day 14 and my oncologist stopped my 5000 mg pills yesterday because I got the hand and foot, diarrhea and nausea. They will reassess the dosage next week. Just wasn't to see how you are because your a couple steps in front of me.
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Sorry El Tigre, can't advise you about recon because I'm not getting any (my choice). I hope yours goes well and that your recovery is quick!
My last dose of Herceptin was the first week of November, and today I had the last cardiology check (ultrasound). The EKG changes have normalized, and my ejection fraction is a whopping 65%! Also, anastrozol had raised my cholesterol to borderline, but now I'm on letrotsole, and it's dropped to well within normal limits again
This, despite eating as much ice cream and chocolate as I want --- but also exercising my a$$ off --- Pilates, cross country skiing, exercise bike. My endurance is still not back to what it was before this cancer craziness --- but getting there Overall I feel so much better now that even the Herceptin has completely washed out of my system. Unfortunately since I was switched to letrozole a couple months ago, every single muscle is always sore 
But so long as I can keep exercising and blame the soreness on that, I can still keep putting those pills in my mouth...Wishing everybody well and hoping you are enjoying the tail-end of winter
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Hi Michelle, I finished most of the xeloda. But they stopped me about two weeks early because I took a bad fall and broke 5 ribs. My liver enzyme we're elevated but mine have been elevated since my first round of Chemo taxol and AC. I got the hand and foot too. My feet were disgusting. I was afraid to clean then with pumice because they say that makes them worse. But finally I could not stand them went to foot doctor once. I was afraid my toenails were going to fall off. Then I went for a pedicure once. So now I am off it since thanksgiving and finally the slim feeling on my hands and peeling feet are getting better. Also I am not as tired. I was getting really depressed with the xeloda. It feels like a new day when you stop and these strange SE go away. I gained 20 lbs because I had to eat whenever I took the pills and I got some esophageal ulcers. But I am major better now not exactly 100%. I am able to stay up past 5 or 6 o'clock. First time since radiation and xeloda. I am more able to watch my diet trying to eat more healthy less carbs but it is difficult. So I hope you will feel better soon. Udderly smooth helped I got a prescription strength Urea cream when it was really bad. But the slime feeling was really weird washing dishes was digusting. Please excuse all the details. I hope you wil feel better now.
Are you triple negative, too?
Best and Spring wil be here soon
JulieK
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Anxiety time again
I found a small red lump on my scalp around Christmas, husband said it was just an irritated hair follicle (hard for me to see, no pain/itching). Forgot about it until I found it again when my comb hit it --- and it's much larger. Took cellphone photos and wrote a note, and brought them to the dermatology clinic. The first free time with the dermatologist who's helped with that weird rash wasn't until late March, but the secretary promised to give my doc my note/pics. Late afternoon she phoned --- leaving for a conference, but wants me in for a biopsy as soon as she's back, Thursday. I guess it's great she's so responsive to my concerns
, but I can't help but feel "a bit" worried, yet again, so soon after that rash scare (still no firm diagnosis, but not cancer, so I'll take it) and so soon after celebrating last week's cardiology check showing all the Herceptin induced heart abnormalities gone, and an ejection fraction significantly higher than before chemo/Herceptin. And then there's this little bit of dry cough..
No, I'm not curled in a ball sobbing, but <sigh> I guess there's justno hopping off this merry-go-round?
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((((tessu)))) keep us posted!
Octogirl
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Thanks so much, octogirl and (((hugs))) back. What makes this even harder is when I mentioned the need for biopsy to my husband, he gave his typical nastyresponse: extremely sarcastic "breast cancer doesn't go to your skin, stupid!". I'm holding up pretty well so far, telling myself don't panic until you know the facts. But he was such an a$$hole through the first round of treatment, and my dear dog is gone now, I honestly have no idea how I'll get through a second round, if it comes to that
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Tessu, (Hugs) And a swift kick to your husband's balls! Ignore those negative remarks, I know it is easier said than done (to ignore his remarks, not the kick in the balls, that's easy
). You know more than him, you know what it is/was like to go on this journey. You know the odds, fears, worries, anxiety, and the pain of not being able to get back to normal. I am praying it does not spread to your skin. From the people I've met and the journeys I've read about it sounds like the skin is not a common place for it to spread.
I wish you had your buddy by your side, but your dog's there in spirit.
Good vibes.
Alicia
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exercise
LOL oh yes they think that it's just like fake boobs on a any celebrity LOL... not quite!
Yes for me it was more than I was willing to take on at first with the flap surgery. Radiation elevated my left and we were trying to lift the right and do fat injections in the left to even them out. Radiation is a b*tch so i go back in tomorrow (happy valentines day to me) to talk about it some more. I read on another forum that the latissimus flap caused all this grief for a few women and they recommended the DEIP flap. The problem really is that I never had any children so it's not a win-win with that flap choice but if i chose the deip flap instead of the latissimus (back) flap then I wouldn't weaken my left side by doing it.
My Plastic surgeon specialty is the flap surgeries. He's good, and it would just leave a 3 inch scare located where my bra would cover.
I only debated it again since the one fat graft didn't really do a whole lot. The difference besides elevation is the cup size. I'm almost 1 cup different. It slightly bothers my ego. I'd like to get to a point i can wear a swim suit with out feeling unbalanced.
That is a good idea for more vavoom
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Just got the scalp lump pathology: NOT cancer. So I remain (as far as I know) NED. Instead of cheering I feel utterly exhausted and nauseous from almost two weeks of overwhelming anxiety
Hopefully the positive will start to sink in, so I can pick up the pieces of my life and get on with it --- until the next lump or rash or pain or..... (label me basket case 0 -
wonderful news!!!!!!
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yay Tessu!!! Wonderful news!!!!
and hugs!
Octogirl
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Dear Tessu, el Tigre, shop gal, ocotgirl, Cajun, michelled24, exercise guru,
You are my clan. I do not post often. Michelle it is not bad with xeloda but towards the end I was depressed and tired. About one month off my feet started to come back to life and the yucky peeling and slime hands just went away. Also, I felt like someone turned the lights back on. My energy is coming back. I can stay up past 6 pm. No insomnia anymore like before BC. But I can go out more in evening though not much use after 8 pm.
Now I am dealing with pancreatic cancer tumor or tumors that are not breast cancer. I had one EUS biopsy and was scheduled for surgery but I fell and broke my leg. Was not displaced fracture so I starting walking on it with crutches and a splint. Fell January 7th now it is better just sore knees.
I have to have another EUS biopsy of another tumor that showed in my $3400 gallium scan which I had to pay for up front. Scheduled on March 16 in Michigan where I go for my cancer surgical care from NYC because my daughter is a MD and she wants to oversee what is going on. Long story I would have had surgery in NYC but I got too many different opinions here. Michigan runs like clock work with great follow up immaculate modern hospital no crowds like here .
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Country,
NO, I'm so sorry you have to deal with pancreatic tumors. Do they know for sure though it's cancer since they are doing another biopsy? I'm glad that your is a MD so she can guide you through this ordeal. Sounds like the facility in Michigan is on top of their game. Last thing you need is a run around or lack of detailed follow up care, worth the travel.
That gallium scan is one expensive procedure, on the plus side I read it has lower radiation than ct scans. I hope/pray that the results of your next EUS biopsy is benign. You've been through enough. I am happy to hear that you are feeling better despite the fall and broken leg. It's nice to feel your energy return, feel more with it as well.
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Country I am so sad that you are having this happen. I am relieved that you had the positive care to have this diagnosed. Pancreatic situations are the hardest to diagnose. Please update us.
I am slogging along and feeling the ferocious effects of Menopause. Insomnia,weight gain mostly but also hotflashes and emotional ups and downs. Any one else? Any ideas of how to deal with that?
I have a situation that I am not sure what to do. My plastic surgeon did grafting aerola and nippple reconstruction around a year ago. After I had them tinted for the first time I noticed a tiny pebble like area next to the new fake nipple on the grafted skin. Its like a small bump. so My plastic surgeon says that it is so small he can remove it in the office and send it to pathology because it could just be a staple or whatever. He is willing to order an ultrasound on the area before to give us an idea of whether or not it is even something to worry about. I guess that is going to be my plan is to have it ultrasound and then removed. On a stress level it is like a 1 but just one more thing that reminds me I am not out of this rabbit hole.
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Country, holding you in my thoughts and prayers as you go for your scan and biopsy this week (((hugs)))
You, too, Exercise. Hoping the nipple bump is just a bit of fat necrosis or scar tissue or something else that is NOT cancer (((hugs)))
I wish that with all the medical/scientific research that is going on, someone would design a new method of looking at biopsy tissue that would give the path results RIGHT AWAY instead of making is wait for weeks :
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I hope El Tigre, Canjun, Exercise, tessu and ALL you ladies that have been on this journey with me, are doing well.
I have not been on here for a while, but I have been with you guys in spirit.
Tessu and Exercise sorry you guys have been having issues, hope all is well now.
El Tigre sorry you are having to go through more surgeries.
I agree menopause is not fun, weight, hot flashes, emotions, but I am just happy to be alive!!!!!
I go for my 6 month follow up mammogram tomorrow please keep me in ya'lls prayers.........
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tkemp, not my ideal year but I'll take it over last year LOL!
Hot flashes I get acupuncture, for mood swings I haven't figured that one out yet. I get low sometimes and it coincides with my lupron shot. I hope when i have my ovaries out and my lupron shot stopped those will be better, I also hear that tamoxifen can do that too. Since my hormones are very very low with the lupron i start letrozole soon. They say that the weight gain is not so much on it as well as the mood swings. If i still have mood swings I'm going to blame my hubby!! lolol
I hope all is well and quiet with all you ladies.
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thank you all for being there this whole story is s saga. Now they postponed everything until April19th and I am wandering around the Bronx trying to find someone to give me a meningitis A and B vaccine seems insurance will not cover it even though it is medically required because they are planning to remove my spleen with the pancreatic tumor. But my primary care docs are not familiar with how to order these two vaccines and the health department closed its Bronx ClinicToo confusing.
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tkemp I wish you best it is worrisome to deal with all those side effects when I did menopause I tried black cohosh and I used to drink and eat soy which is now really contraindicated too little real information about side effect and nutritional supplements since I got breast cancer I completely eliminated all soy products.
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Hoping the quiet in this thread means everybody is doing well. I'm finally getting good treatment for my back pain/sciatica --- joked with my husband that it's "nice" to suffer a "normal" nondangerous problem to deal with.
I was switched from Arimidex to generic Letrozole around Christmas, and hate it --- all my joints and muscles hurt, but luckily naproxen helps, and stomach acid meds help me tolerate the naproxen. Arimidex only caused stiffness. Asked oncologist to switch me back, but he refused, even though the rash that was the reason for the switch was eventually declared by dermatology to not to be a drug allergy after all. Going to ask again at my 2-yr checkup in September.
I still haven't been able to return to work because of ongoing memory and attention problems from chemo, but docs assure me "things will get better with time". Crossing fingers.
Wishing everybody here a Happy Easter and start of Spring
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GL with Letrozole tessu. I was pretty debilitated on it after 5 weeks so being generic Aromasin is very expensive with my insurance or with goodrx and Arimidex is not said to be better than Letro on my bad joints (and hair loss, a biggy for me too) I'm back on Tamox. But I have lower abdominal discomfort that comes and goes where they are going to do a pelvic u/s early May to see if maybe the 4 fibroids in my uterus (2 are 3 cm each) could be the culprit since Tamox can cause them to grow and/or irritated. Other than that, Tamox doesn't bother me. Other than that, I'm fairing well with side effects from chemo/rads/who knows. Fatigue is the biggest issue that never seems to resolve itself. Need my naps most days.
Seems like it wasn't that long ago we were the current starting chemo thread and now we are 1 1/2 years out from Sept 2015. Hope all is well with everyone.
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Artista --- I hope your ultrasound gives answers about your abdominal discomfort --- something not dangerous and easy to fix. I had one by GYN and one regular a month ago but they didn't show anything helpful. But since the discomfort is gone (hopefully for good!) I'm not going to pursue it. One thing very weird: I have had a rather large fibroid in my uterus. After just over a year on AIs it's shrunk so much the GYN could hardly see it on US! Also the ovarian cysts I was still getting after menopause are gone. Huge surprise for me -- I was thinking one or the other was causing my stomach pain.
I hear you on the fatigue
I have not yet found a solution to that. Naps don't help, and I wake up several times every night despite melatonin I'm blaming the AIs0 -
If they don't see anything on pelvic u/s then next is full abdominal CT. It's not continual all day but is daily, over uterus area, off to the right side like inches to the right of the uterus and back where it feels like kidney pain from time to time. Glad it's not all day long and sometimes when it strikes it's not so bad, but occasionally it makes me go ah. Been going on for at least 3 weeks now.
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Hi all!!
Yes hopefully quiet means less problems LOL
My herceptin portion of my trial is over (YES!) My heart took a hit though and they put me on 2 types of meds, a beta blocker and ace inhibitor to protect my heart from the last few herceptin doses. BUT fatigue is a major SE. So I emailed my cardiologist and she will switch me. I only have to be on them for a few months then have another ECHO.
MY EF rate went from 65, then after chemo to 55-60, then herceptin 50-55. It should regain some points after herceptin.
As for Tamoxifen I switched to Letrozole about 1 1/2 weeks ago. Since I am on Lupron shots my estrogen is so low I am able to take AI's.
The big question now is do I get an Oomp? I thought I was decided but after checking with all the docs now I am not so sure. The SE of getting the ovaries out have caused me to rethink it.
Heart Disease, Stroke, Bone loss (on both Oomp and Lupron), less libido (already on an estrodial cream for vaginal dryness small amts), less cognitive thinking etc....
I know some of you have done this or a hysterectomy, any thoughts on your decision? I'd hate to stay on lupron for a long period of time.
I found out they are using lidocaine for painful intercourse. A small amount on a cotton swab applied for 10-15 before sex and rinsed away. For the back burning sensation like sandpaper. I haven't tried it but thought I'd share might be something to check out.
Alicia
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El Tigre
I appreciated reading your update. What did you decide on your reconstruction? Any progress.
I have quite a few ideas about the ooph. I can't tell if the side effects are more from the AI or Tamoxifen than from the ooph but the side effects of early menopause are real and pretty sucky. Some women can manage it more than others. I would consider staying on Lupron for awhile before you decide to go permanent. MY MO didn't think I would notice the difference since he was sure I was in menopause but it was a huge difference.
Some depression. Hot flashes. Budda Belly weight gain. Achy joints . and ofcourse dry and painful intercourse and loss of sex drive. My worst is insomnia and Severe Night sweats.
I was in a tough place because like you on the young side and throw in the Palb2 gene and it was pretty much required.
Did you stay on Herceptin longer than a year? By the end of my year Herceptin had wiped me out physically I was pretty exhausted even though they didn't think it caused that. Now months and months later I am feel quite a bit of the fog lift.
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exercise - I decided on doing the latissimus flap. Even though it's a few steps back for me at this point. I may do it in May or after summer. I meet next Thursday to discuss it more and firm up the plans.
As for the Oomp I'm undecided so i am waiting for now. I tried to drag out of the few docs what staying on lupron will do to me but I have not been successful. I noticed this past weekend AI's bring a different kind of achy joints (radiating pain) and 1 or 2 more night sweats. I figure I'll adjust to it and add more meds or creams to me already climbing arsenal.
It's tough on the ovaries, and my new gyno says she doesn't want to take them out but she will if i want her to. Like you it is the age thing and being with out them for so many more years.
Yup 1 yr herceptin. DONE! I felt the fatigue but mostly it was the inconvenience of going back every 3 weeks. My next steps for the trial are booster shots every 6 months, another echo in a few months, and blood draws. Not too much left thank goodness. Hoping the herceptin knocked out any small cell left of HER+ (HER+ "1") that chemo didn't get.
I feel for you on the depression, lack of libido, and all the crap that comes with this. I find myself lying awake some nights doing a release cry and hating every thing about this journey. So jealous of people who do not have to deal with this.
On a brighter note Maui in a few weeks Camp Koru.
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El Tigre and Exercise:
so your docs also claimed that Herceptin does not cause overwhelming fatigue. Ha. My EF was 55 before chemo/Herceptin and didn't change much during treatment. But I was always so tired, I was scared each new EF would show a drop. Afterwards the post-treatment control EF was 65 (6 weeks after last Herceptin? I don't remember exactly). A few weeks before that test, I purposely pushed myself to use our exercise bike a couple times a week, and to walk a lot more, and think that helped.
I think AIs also affect energy levels differently (again doc says no) --- I was switched to generic letrozole before Christmas and feel so much more fatigued than when I was on anostrazole. Very very hard to push myself to exercise
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Tessu, I don't think the docs actually read the SE on Herceptin or AI's LOL. I felt fatigue after every dose. It attacks your heart HER cells so why woudln't we feel tired, makes sense to me.
I'm anemic now and my ONC was worried for the entire year but when we read the website on herceptin it listed anemia as a SE. I think my ONC compares her patients SE to each other instead of relying on the website SEs.
That's great with your EF #! I'm hoping to bounce back as well.
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Just checking in. So far, still NED, for which I am so very grateful.
I feel ashamed because my chemo brain still prevents a return to work, while pretty much everybody else has been back working for a long time now (here and in the local bc group). Having difficulties with learning anything new, with multitasking (at home!), and especially with short-term memory. Still making lots of mistakes with appointments etc. despite writing everything down. Dropped out of a quilting course because I just couldn't keep up. Husband and kids have suggested just retiring, because I'm already over 60. Also because I've been in so much pain lately. Since I've been more active --- added long walks with my new nordic walking sticks to my Pilates --- my previous problems with back pain and sciatica have returned worse than before bc, and that alone would make work really hard for me. Seeing a physical therapist who's trying to help. Anyway, I've got that major decision to make soon.
I am so very grateful for every day I wake up and don't have to go to the lab or chemo. Extremely glad there are no pathology results pending. Smiling more, and enjoying watching the snow melt and the spring birds arriving. Letrozole makes every single joint hurt except, for ?? odd reason, my toes -- weird, huh? --- but I'm committed to the full ten years, if it will help keep me alive. Yes I still get scared about recurrance off and on, but am no longer paralyzed with fear. Nobody is promised tomorrow, so Iam concentrating on living today.
Wishing a happy spring to everyone here.
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