Any 40-ish survivors?
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Rowan, I can't answer your question, but DAMN! Girl, when you decide to have a bad year, you have a BAD year! Wow. Lesson learned. It could be worse--you could be experiencing massive earthquakes in the middle of your breast cancer. Seriously, if you can do all this, then you should climb Everest or play lotto or something.
My BMX is scheduled for August 23rd. We'll be recovering together! I hope someone else here has some answers for you. I'm slated for the Tamoxifin b/c I'm 39 and not removing my ovaries (worried about the bone loss and my history of pretty severe scoliosis). Anyone else know?
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Hi profbee - I was on Tamoxifen for 5 years after my first BC dx - I was 32 at first dx. I pushed for a DEXA (bone density) scan somewhere around year 4 b/c I'd read that Tam can cause bone loss in pre-meno women and sure enough, I have osteopenia in a bunch of places and osteoporosis in parts of my spine. With concerted weight-bearing exercise, vit D and calcium intake (vit D supps, calcium from food - mostly yogurt & kefir b/c I'm mildly lactose interolerant), it's held stable since '05.
Onc still doesn't want to remove ovaries though - even in light of my June '11 dx of a new primary in the other breast - too many bone loss/quality of life issues and not enough evidence that it'll make a difference in my prognosis (I am going to do a BMX in Sept.).
Everyone's different, though - I hope your surgery goes smoothly and that your recovery is as swift as possible!
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Hi everyone:
I was on holidays with my family, but am now back. Didn't spend much time on the computer when I was away. My ankle has healed, my first 3 month mammogram was clear and life is good.
Kym: If you haven't already been to Victoria I would love to meet for lunch. My email is jsmids@pacific-is.ca.
Burley: It is strange your eyelashes are falling out again. Mine fell out during the last taxol round, but came back really quickly and much thicker.
Welcome to this thread Rowan.
Joanne
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Hi Rowan... WOW ... makes us all appreciate a smooth surgery, no quakes here.
I am in a similar situation... I had lumpectomy, then chemo (TC) and was supposed to start rads, but chose BMX instead... had it two weeks ago.... had a bilta MX and hip flap recon.
You really should do the taxol, as it is unrelated to any surgery you have; it helps with a systemic recurrance, and Taxol isn't so bad. Second, yes, you will still need tamoxifen... I asked my MO just last week about the tamox after MX and he said it also helps with systemic recurrancce. I understand your need to be done with it all, butdo what you can to not be here again due to a recurrance. I don't know your stats, but I would discuss all this with your docs.. what do they say?
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Rowan47 - Wow you have had a rough time. Hopefully things are settling down for you. I too had a BMX but I reconstructed to smaller breasts (saline implants), and I am just now beginning to feel 'normal'. My doctors said we will make a decision on removing the ovaries in five years, after I am done with tamoxifen. I am 46 now. I have been on tamoxifen for over a month now and honestly for me, it has been really easy so far. I have hot flashes, but those started during chemo and aren't any worse. The two annoying SEs have been dry skin (use coconut oil and that seems to work for me), and a slight issue with incontinence (doing kegel exercises and acupuncture and that seems to be helping).
Even if you have your ovaries removed your doctors may want you on a AI, so it may still be recommended that you take some sort of estrogen suppressing medication. Definitely talk with your doctors about it to understand all the pros and cons, plus what benefit it will provide for you.
Best wishes and I hope those quakes mellow out a bit. I am in California, so I relate to earthquakes.
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incontinence... OMG.. can't wait.
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It is suppose to be a 'rare' SE, and there are worse ones, so if this is it with the dry skin, I will take this. It hasn't been bad, but a bit of a nuisance. Started just a little over a week after I began taking Tamoxifen. It has gotten better with good ole kegel exercises and acupuncture. It has been manageable and has not stopped me from enjoying life again with swimming, yoga, hiking, walking, going out to dinner, going on vacation, etc... My doctor said if I keep doing what I am doing, it should just go away on its own. Keeping my legs crossed.
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How do you use acupuncture for incontinence???
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Oh the things we can talk about here! I love it! My incontinence came on with chemo (chemopause) and seems to have really faded since the return of my period. Don't know if the two are related. My first period back from chemopause was unbelievable, hurt, heavy, you name it. I had to leave work and missed the next day. This month's was quite normal, a little longer than what I remember but no pain etc. I have started to take Krill Oil which says it can help with all the things we love with PMS and heavy cycles. Don't know if that helped or just coincidence.
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Definitely drier skin with the Tamoxifen, but also no more breakouts
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Don't know exactly how acupuncture works on incontinence, but it is helping me. I go for treatments about every 7 -10 days. My acupuncturist places the needles accordingly to treat it and after I have a session it is now non-existent for about 5 days, then comes back, but to a lesser degree each time. With treatment and the kegel exercises he says it should subside completely.
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Proudmom - I was just joking, although I did wonder where they put the needles...the first time I read kegel and acupuncture in the same sentence I got the oddest visual and burst out in giggles! Thanks for the smile today 0
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Yeah I thought it might come across strange. Didn't visualize it though until now. That is an interesting picture. 0
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Rowan. I agree with Betsy. The taxol isn't so bad. Compared to AC it's a breeze for me. I've had #5 of 12 today. I feel totally fine afterwards.
With AC I was quite sick and nauseous. Doing the Taxol will help with recurrence. BMX just helps with local recurrence. Trust me the 12 weeks is flying by. I have 5 weeks rads to follow but can see an end in sight.
Hello to everyone else. In amongst my treatment, life is busy and flying by. I'm still working full time, and enjoying it. Roll on 2012 so I can get on with the rest of my life!0 -
Rowan - welcome to this thread and I will echo the others that Taxol for me was much easier than AC in all respects.
Lisa - congrats on getting your period back again and I will hope this first time is unusual, like Gina's. I'm still waiting for mine and like you, it will be good news, bad news. But at 44, I would rather it return for a few years. Its been 9+ months already...
continuing my previous thoughts, when they publish the 5 year "survivor" stats, I wonder how they define 5 years? think it is from date of surgery, since that is when most people would be staged and considered "cancer-free"? I agree with you Sarah, my dx date is the date my left changed so that is probably what I will pick. Although still thinking about surgery date for above reason.0 -
Meegan - the 5 years is from date of dx, so even if your dx isn't technically complete, that's your start-date . . . what you choose to "celebrate" or mark is your decision! I know I'll always remember and mark, some way, the date of my (upcoming) BMX. A dx is life-altering but so is having your breasts removed. : (
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Profbee, you made me laugh with the "climb Everest" comment. You are right though, it's been a hell of a year!! Saw BS yesterday and booked in for BMX on July 18th...feeling quite relieved really; I think the waiting is maybe the hardest part...anyway, asked her about tamoxifen, and she wants me to start it after recovery. Main side effect, she thinks, is the increased risk of bloodclots. Also, she doesn't think it necessary to remove my ovaries, as the adrenal gland also produces estrogen.
I am trying to keep myself busy, so as not to ponder on upcoming surgery. My DH is extremely supportive, and backs me all the way. Hope all you lovely gals are feeling well
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SAO, my dx date is April 1, 2011...April Fool's Day. Don't believe I will EVER forget it, either! ;o)
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Oooh, Marthah, that's a bad joke!
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Just stopping by to say hello. Not a lot going on here. Going to try the MRI again this week. Hopefully it will go better this time. I have been practicing breathing while lying on my stomach. LOL. I am anxious to get it done. I feel so lumpy lately (maybe related to my period returning) and hopefully this will give me some assurance of nothing to worry about. I don't trust mammos anymore.
I hope everyone is doing well.
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Take your Ativan for breakfast! I had them play 80s music--each song cracked me up and made me think of people from high school and stuff. I just focused on that and trying to remember the words and I got through. MRIs are not fun, but I bet you'll do it this time! Good luck!
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I second that, take your Ativan for breakfast! It really does help getting through an MRI.
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Just thought I would offer another tip for the MRI. I estimated that each song I heard was about 3-4 minutes so I would figure out about how many songs I would listen to before the MRI was over. It helped me keep track of how much time I had left and I would sing along in my head to all the songs. It was really exciting when I knew I only had 1 song left before I was done. Hope this little trick helps.
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Yes, exactly. The tech would say this one is "7 minutes long" or something and then when I thought it MUST be done already I'd realize I was only half a song in and to just listen along. It was a big help to have song "landmarks" to keep track of the time and know I was nearing being finished.
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Thanks for the tips. I am not really afraid of the MRI. I am not claustrophobic. I did, however, find it incredibly painful the first time (last year). Those bars that they lay you on sit in a position that hurts me. I could not even move my upper body when it was done. I had to slowly move my arms a little at a time until the pain went away.
I really think the problem a few weeks ago was the giant smoothie. I drink a 32 oz smoothie each morning (3 svg each of fruits and veggies. . . all my anticancer stuff in one meal). I think I was too full to lay down and still breathe properly.
Nonetheless, I am still having an Ativan breakfast, just to be on the safe side.
And to think I am the one who insisted on the annual MRI. LOL.
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Hello girls! Welcome Rowan-glad you found us. I was going to say Yes, definitely take the Tamoxifen, but your doctor beat me to it. I started it immediately after chemo, and was on it until they took my ovaries out in February. Now I'm on Arimidex. Nasty stuff-or it's just my luck that I got every side effect listed.
So I was reading about underactive Thyroid since my Onc ordered a test with my next batch of bloodwork, and I swear I fit the symptoms. Lethargy, dry skin, thinning hair...in a way I'm hoping my thyroid is messed up so I can take a medicine for it. Not that I want to add any more meds, but I would like to not feel like a zombie all the time. My thinking has become so foggy over the last 3 weeks or so, it's scary. And like I've mentioned, not only has my hair stopped growing but it's thinning out again. WTH.
Lisa-good luck with the MRI. I had Xanax for breakfast before mine-it took the anxiety edge off, but the pain I was feeling during it just amped it up again. By the time it was done I was a wreck. And I also had to slowly peel myself off the table and stretch each limb out to make sure it was working. Even so, I will insist on doing it annually as well.
Still going to PT twice a week for my frozen shoulder and tendonitis-some days it feels fine, then others it hurts like hell. I think he's going to release me after Wednesday-he's given me so many exercises to do at home, it takes me an hour. And I have to do them twice a day. So I could do without paying ther $40 a week and just go about it on my own. We'll see.
Good luck ladies with your upcoming BMX's-we're here for you. I hope that your recovery goes well. And I hope everyone else going through treatment is feeling well.
Have a terrific day everyone!
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Hi Ladies
I'm in the chair later today for Taxol #6. That means I'm halfway through this stage and 3/4 finished chemo! The weeks certainly roll around quickly.
Our pool has been dug and concreted. The garden looks like a complete tip but it is progressing. There is still a long way to go until finished but we are hoping to have it completed by the end of October, in time for our summer.
We booked some flights last week to visit Melbourne, Australia in October. My DH has some relatives coming to Australia from the UK and we are taking the children over to meet them. My last chemo is 26 September and I thought I then had a month's break before starting rads and happily booked flights etc. Last week my Onc was not happy. He gave me quite a hard time about it and wants me to start rads sooner. Too bad I say! I'm sick of everything to do with BC and just want 5 days away.
Burley - my arm has quite bad cording that is very sore at the moment. My PT charges $100 a session and I'm gone from weekly to every 2nd week because it was costing too much. I also have exercises to do ... but am not doing them as often as I should.
I hope everyone is having a good week. I'd better get back to work.
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mom2one - I count the songs too! I also hate the MRI's, although I didn't find them uncomfortable, just so loud!
Lisa/Kim - did you talk to your onc about getting yearly MRI's or your gyn? I would love to demand that also. My lump was so palpable, but the mammo couldn't even see it, I don't have any faith in mammo's anymore. I guess there would be some drawbacks, the radiation, the "false positives", but it seems like a good idea I'll have to explore.
Went to New Hampshire this weekend, so beautiful. We hiked, canoed, swam, jumped from a rope swing and had a blast. It's a long drive (5 hours) for a weekend, we went up Fri, home on Sunday, but its fun to see our friends and it somehow it always seem like we do alot up there.
Been walking alot, so that's good. Still have to fix my eating habits (esp. after eating so farm fresh in NH), but 1 thing at a time.
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Hi Ladies, sorry I havent checked in in awhiile, time sure is flying by. I am now in my third week of Rads so far just a little reddening under the boob I finally went and got a good sports bra I was still wearing the underwire one and it was starting to really aggitate my boobie. Good lord it cost me 135 for one that would fit my girls and keep them up wear they once lived.
Joanne I have not gone to Victoria yet, not sure of my scheduale as we are only there 4 days but I will email you and see if we could work something out I would really like that.
As for periods how long after final chemo did your periods kick in for those of you that have gotten them back? I havent yet and not really sure what to expect I just carry some tampons around just in case. Once month though i do get a lovely period zit WTH...lol.
My eyelashes well I lost about half during chemo but havent really noticed any new regrowth as of yet. I have a full covering of fuzz on my nogan, could almost be considered hair. Maybe in a month it will be enough to go without the lids we shall see.
Am getting hair down there lol but not under my arms or legs yet. Although I have gotten this lovely peach fuzz growing all over my face !!!!!! Can I wax this or will it grow back worse ? Does anyone know or have this?
Ok back to work I will check in later promise not to go so long again
Hugs Kymn
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Kymn - I too had the fuzz on my face like a blond "beard" Some women on here call it monkey face. I trimmed mine. I was afraid to shave it, because I didn't want it to come back thicker. I will say it has not come back since I trimmed it. This is one side effect that nobody told me about. Yeay for the hair on your head! I just started going without a hat for good last week. I am use to having bangs so it is still hard not to have hair on my forehead, but it is better than having to wear a hat and helps with the hot flashes.
If I had not have had a BMX I would be asking for an MRI every year too. Not confidence in mamo. Didn't catch it the first time and I have been having them since I was 33. I found mine when I started having pain one month after my routine mamo. Had 3 tumors by then.
Have a great rest of the day and week!!
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