Any 40-ish survivors?
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I am a little late, but wanted to join this thread. I was diagnosed on 12/15/10, a few days after my 43rd birthday..I had a single mast on 12/21..chemo started on 1/20 (4 DD AC followed by 12 taxol)..and I will be finishing chemo on June 2nd. Since I am triple negative, that is the end of te read for treatment options (no tamox or herceptin).. I will have a PET scan two weeks after my last chemo to hopefully give me some piece of mind that it hasnt spread anywhere..and then after I recover from chemo, will have a L MX and TE in place., probably in Aug.
I have a 14 year old daughter. and am married (20 years this July!)..
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Hi to all you new 40-ish girls,
For those of you still in treatment,hang in there. I am now 3 weeks out and definitely feeling so much better. You will be there soon.
Question for those of you who have had mastectomies and axillary node disection, have gotten any feelings back in arms? I am so tired of my numb arm, not to mention my numb chest.
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I have most of my feeling back on my right side. I have my MX on 12/21. I am still a little numb in my armpt and at the crease but have much more feeling back..Only problem is with less numbess I feel more twinges of pain..
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I am two years out in June from BMX and have very little numbness in my arms...not sure when it went away but I do remember wondering if the numbness would ever go away.
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Nope! 3 1/2 years since lumpectomy and still got numbness under arm and in armpit. Also - quite bad lymphoedema, esp. with all the treatment I had and it's getting worse due to rads damage . Warning to all you girls out there who have had node removal - be very careful with over-exerting your bad arm as lymph. is a condition for life and you DO NOT WANT IT!
Love, Sarah.
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Wow, it took me so long to catch up reading all these posts! Hi to all the new posters. Kymn, fair warning that day 3-4 after your Docetaxel (taxotere) you might feel like you've been hit by a truck. I had terrible aches and pains, but no nausea, thank goodness. Take some ibuprofen and drink lots of fluids if you feel like you have the flu. That is pretty typical. I also had a lot of indigestion with the last 3 treatments.
As for numbness, I'm a year out now and my armpit and around the back of my shoulder is still numb. I have feeling now under my triceps area. I think it just takes time.
I've been using coconut oil for the aforementioned chemo/arimidex sahara desert dryness. Even olive oil helps. KY products sting me for some reason. My DH is weird about s.e.x. post BC. He won't initiate it EVER. He wants to have it, don't get me wrong, but he waits for me to initiate, and I could wait forever, honestly. But for him, I do my best to let him know I'm willing, every now and then. It would make me feel a lot better about myself if he would make a move though. I think he is trying to be sensitive and not pushy, but if he knew what it was like to have no estrogen, he would understand. I wish I knew what to say to him to get him to go back to his old ways!
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Sara1968uk,
Good to hear you are currently not undergoing any kind of treatment....seems like with this ordeal we are always doing some kind of treatment. I was the kind of person that never needed any kind of medication..... I do not like having to take the fareston but will do what I need to. I wish you the most wonderful vacation. Enjoy that dip in the sea....one of my favorite places to be. We went to Florida while I was between chemo treatments...I did fine but would do better now that chemo is behind me. Love to eat while on vacation and food just did not taste like it should. Anyway...enjoy!!!
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Re: numbness in axilla... I am 6 years from my MX and node dissection, and my arm is pretty normal - feeling-wise, but the axilla (armpit) does not feel the same as the other side, not bad, just different. My chest wall that is missing a breast has the flattest scar ever on it, and it has zero feeling in the MX area. I'm having reconstruction in 2 weeks and know that my new NOOBS will have no feeling either, but I'm okay with that.
Re: S*E*X Back in my chemo days, I didn't feel too sexy when I was bald. When I lost all of my eyelashes AND eyebrows (complete hairless wonder), I felt like an alien and not sexy at all. It was pretty rough looking into a mirror and not even recognizing myself. My DH still wanted to get it on, a lot, but it was so hard for me to concentrate on the big "O" when I felt so bizarro. Then, my Onc. suggests I take a mild anti-depressant. She prescribed Lexapro, AKA No-Sex-Apro. After taking that little happy pill for a few years,achieving an "O" became next to impossible. When it did happen, it was kind of "eh", and then it was weeks before I was due for another "eh".I no longer take the Lexapro, and am happy to report that my "O" is returning - not quite as intense as in my younger days, but better than "eh". I have not experienced any of that sandpaper-like dryness yet, nor vaginal wall thinning - but it has only been 5 months since my oophrectomy. Time will tell on that. I'll get some of that KY Intense lube and give it a go.
Re: eyebrows My eyebrows (and lashes) fell out a lot slower than my head hair. Now that I think back, I think the brows and lashes just shed as they would naturally, and none were growing in as the shedding was taking place. I used a product from Smashbox called Brow Tech that was great at extending and then faking brows. I used the one that was darkish brown on one side and a wax on the other. After chemo was over (AC & T), I had no eyelashes, but a few stragglers of brows left...then one morning about a week after chemo ended, I wake to NO eyebrows at all. It was like pouring salt on my wound. My brows grew in nicely, as did my lashes. Then my lashes thinned, and were not the same as they were pre-chemo. My lashes (pre-chemo) were long and thick - chemo did a tune on them. I use Latisse now, and they are back to their long and thick selves - but it took a few months of the Latisse to get them there.
Re: pre-teen daughters To anyone who has one (mine is 12 1/2), I feel your pain. My DD used to treat me like I was a genius, fashionista, funniest mom ever, best cook, best dancer - pretty much good at everything I did - fast forward to present day. I am the same person (a little older, perhaps a little wiser) - but now I am basically an annoyance to her - with no clue, no sense of style, no ear for cool music, etc. I wonder where my beautiful, loving daughter went and who this strange gal is in her place ??? She hasn't started her period yet so this emotional upheaval may get worse before it improves. When she is in "one of her moods", my DH calls her "my daughter", when he helped make her too. It probably doesn't help my cause that she looks like me. Not sure if anyone enjoys country music, but my new anthem is "Teenage Daughters" by Martina McBride. My DD used to enjoy listening to country - now she tells me that my music is for dorks. How sweet. HA HA. I'm a clueless dork - NOT !!!
@Burley Kim, did your tattoo artist happen to mention how many hours the process of tattooing nips and areaolas will take? And are you having the 3D tats done? I ask because the artist that I contacted said she charges by the hour = $200.00 per hour, for nip/areola tats. First I was thinking that I went into the wrong career as I do not make anywhere close to $200.00 per hour, then I wondered how many hours it would take to tat a pair of kick-a$$ nips.
Have a great w/e everyone. I'm working this w/e, so it won't be too great. I'll make the best of it...I always do
~Lori
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christine47, I had all nodes removed on my right side and yes I still have some numbness that runs down from under my armpit to the elbow.
Sara1968uk -I had been doing fine with my arm and thought I was out of the woods for lymphedema but...two weeks ago I planted tomatoes and I began with mild lymph. I was just fitted for a sleeve this week.
Sheeleyj43- I also felt very achey with taxotere. I was told that it would be the easy one and I think it is for some. I actually used the pain med. for my MX surgery at night to get some sleep.
Marial- June 1st is right around the corner....it is good to get chemo behind you .TE can be somewhat uncomfy but doable. I had them for a year...I hope the scans are good and you can continue the march ahead. Twenty years is awesome . Hang in there!!!
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I don't know how my surgeon did it but I feel very blessed that I have feeling in my chest wall area. My numbness is under the arm and armpit area and then on the side of the arm about 1/4 of the way down to the elbow.
I think I have a tween in the making. She got her first phone call from a boy in her class tonight. OMG she is only 8. lol She had it on speaker phone so I herd the whole conversation. He think her laugh is cute and sounds like a happy baby.
She has always gotten along better with the boys than the girls in her class. She already throws tantrums like a teen so the teen years shall be intresting.0 -
HELLO BURLEY;
I AM LIZ19 I AM 3 YR SURVIVOR DIAG . IN 08 FOUND A LUMP IN MY LEFT BREAST THE DAY BEFORE OUR ANNIV OF 22 YRS THEN ,!!!!!!!!!!!! NOW BEEN MARRIED FOR 25 YRS IN MARCH OF 2011
WE HAVE 3 DAUGHTERS 25 , 20 AND 16 , AND ONE SON THAT IS 3 1/2 YRS OLD NOW SO GLAD ALL MY TEST HAVE BEEN GOOD SINCE THEN I AM TRIPLE NEG , AND NO PILL TO TAKE ADD ME TOO YOUR FRIENDS AND LETS CHAT WHEN YOU CAN AND WHO U WANT TO TALK SEND ME YOUR # AND THEN I WILL SEND MIND NICE TALKING TOO U AND ALL THE NICE LADIES ON HERE AND I LOVE MY HUSBAND TOO HE HAS BEEN THERE FOR ME THROUGH THIS AND I AM SO GLAD HE WAS HERE AND MY FAMILY AND FRIENDS !!!!!!!!!!!!!! TAKE CARE
LIZ19
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Greetings new girls.
I had my MX 10/3 with full node dissection and still have numbness of the underarm and tricep. My chest on the MX side still feels like I have an immobile block of wood stuck there. It is now over two months since surgery and only recently have I been able lift my arm straight above my head. It's tight still and I still have cording but I can do it.
SEX - what's that. I think my poor DH and I have done it once since then and only because I felt sorry for him. Not because I felt like it. I agree, libido - what libido?
I'm having a glass of red wine tonight. My first glass since I started chemo. I know my onc said no alcohol but I thought one glass would't hurt. Who knows. He also says "you have to live your life" ... and I agree!
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Hi all. So fun to read up, even it's cuz I'm not sleeping when in should be... Long lasting cold virus keeping me stuffy nosed and mouth breathing.
Kymn, i hurt for u with the dh not helping. How's it now?
Seems like many ofmus are in the same boat(bed) on the chemocelibacy plan. Ah well. Another fun question: who else finds they have a new level of bedside paraphernalia that has everything to donwith the body but nothing to do with sex?! I think I made 3 trips to take the accoutrements from my usual bed to my donttouchmypillowcaseorgetanygermsinhereduringmynadirplease bed. And I forgot the Kleenex. Back I go for trip 4....0 -
Liz19- I am always so happy to hear about you gals who are 3 and 5 years out. I met a lady the other day who 17 years ago was stage 3 and and everyone thought ummmm well as you know treatment now has come a ways but....even still she did great with what they had "way back then" Thats where hope comes from. We were in Beaufort South Carolina last year for the first time. It is so beautiful there. If I had a few million dollars laying around I would love to have one of those mansions by the water and I would have a Bed and Breakfast AHHHH! Twenty five years of marriage is wonderful.
kiwimom- I like a glass of wine or a beer or a drink of some kind every now and then. Friday is lets have a drink night at our house then Sat. morning I hear my onc voice ( no drinking OR min. drinking ) As I said I don't like that voice....I do let myself have a drink now and then.
kittydog- my numbness is much like yours. It seems these days even though I only had surgery 1 year ago the way they do the node dissection may change. I am sure you-all have read that the docs are now saying even if cancer is found in the nodes it is not necessary to remove all of them because the rads and chemo will get them and the lymphedema can be very tough and not curable. I don't know though....I just don't know how I would feel about having positive lymph nodes left in there....I have just trusted my doctors and marched along. I am missing all 19 nodes now and do have mild lymphedema. I go for therapy next week. For a year now ...I have not really talked to anyone about cancer...except for my chemo friend who I still talk to. She did the survivors parade here during the Oaks ( the day before Derby ) so ....it is comforting to know there are others who are in my boat with me and we are all sailing. Sorry for the long posts.
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Thanks everyone for commenting on the numbness post Mastectomy and node disection. I guess it looks like I will stay numb or maybe get alittle sensation back from what you are all saying. Wish I would have never had the node disection, oh well wish I never had BC too.
chemocelelibacy plan- love how we have our own language! And we all know the definition.
simplesoul- hope you feel better soon. Love the name of your bed, I was the same way during chemo, did not even let my husband sleep with me if he had as much as a sniffle.
Everyone have a great Saturday.
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I had 2 nodes taken out and no problem.. when you all talk about numbness, is it from the dissection only or does a MX cause lymphedema?? I ask because I am leaning toward a BMX with no additional nodes and skipping radiation (as I don't need both MX and rads).
And I have an 18 year old daughter who at some point in her 16th year decided I was the devil... It is better now, but not back to where we were pre-16... very sad and has made me cry often... I am hoping that someday we will be back to our old tight bond... hang in there... I do believe there is a light at the end of my tunnel.
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Hi Kim and all!
V.similar to me re:lymph.issues. Had 18 months of normal arm - and yoga helped with the pins-and-needles tingly feeling you get post-surgery BTW - then decided very foolishly to help my family, including my in-laws who were over 70, shovel a massive load of stones we'd had delivered which were blocking the pavement. Well, within an hour - large, puffy forearm! It didn't go down either, which after a few months, caused my onc. to get suspicious and, after scan, regional mets diagnosed. so, perhaps it was a blessing in disguise, really! Now up to 62% bigger than my good arm, so having bandaging done in a couple of weeks - what joy! So, you take care of your arm when planting your veggies etc and wear that sleeve!
I think that a glass or two of red wine a week can't harm! I've cut down A LOT from my pre-dx wine consumption, but still indulge occasionally esp. when having a yummy pizza or pasta dish. I read too in "Anti-cancer" by David Servan-Schreiber, that red wine is beneficial for us, in small amounts, so that stops me feeling too guilty!
Love to all, keep posting, Sarahx
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I continued to have my wine or beer thru chemo... not tons, but some and my MO said it was just fine... at most I had 3 beers or so at a time, and would never do that consecutive days, but maybe 3 times a week or so... I think (although someone can correct me) the reasons for not drinking during chemo is potential harm to the liver... not because it negates the chemo... Am I right??
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Bdavis- The lymphedema comes from the node dissection. I understand that trouble would not come from MX. The more nodes removed....the more likely or should I say the more careful you have to be . I worked out quite a bit after chemo was complete- boy pushups and weight lifting all of which onc said was good...it is good to exercise the arm smartly....I think it was the tomato planting in "humid " weather that did it. We were even in florida while in the middle of chemo in august I drug a canoe around and I was fine....it is so weird this lymphedema!! I have to think differenly I guess .
I don't think drinking keeps the chemo from doing the trick...in my case I'm supposed to limit drinking because I am highly estrogen positive and they say alcohol has a way of fluctuating that estrogen level.They want any of those left over cancer cells to starve. You know I still enjoy a very cold beer and I try not to feel too badly about that.
Sarah1968uk - Good luck with your arm. I hope they can get that swelling under control. I go next week to get massage training. Apparently there is a way to manually move the fluid to an area in your back where working lymph nodes are located. There is a book about this subject but I will have to look up the title again. I know what you mean about thinking you can get out there and do everything and I want to do EVERYTHING now that chemo is over. My family reminds me to think before I do.....
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I am also highly ER/PR positive 98% for both... so how does the alcohol affect that?? And I assume you mean forever, not just during chemo.
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Hello girls! Welcome Marial and Liz!
Christine-it took about 9 months or so before the numbness in my tricep went away, and for some reason it was just on my left arm. I have no idea why it was just on that side. I never asked if nodes were taken on both sides or just one. ?? I am SO thankful I don't have LE and knock on my wooden desk, I will never get it.
Lori-I'm booked for an hour for the tatts. So if she wasn't giving me the discount, she would be making $1190.00 per hour. WTH. I need to get into her line of business.
I did not drink during chemo (I always had very low WBC counts), although I craved beer the entire time. Now I drink probably 2-4 beers a week, sometimes less but never more. We're going camping for 4 days next weekend, and I'll consume probably an 18 pack over that time. Whoop whoop! I love camping.
I hope everyone has a terrific Saturday! Hugs from AZ!
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Lymphedema - I have bilateral and truncal LE and only had nodes removed on the right side...with LE, you never know, you can develop it right after surgery or 20 years later. You never know what will trigger it either. Just take precautions, avoid over using your arms with repetitive movements, take care of cuts/burns or bites immediately to avoid infection and wear a sleeve when flying. I am blessed that my arm LE is under control and I only have to wear my sleeve when exercising, if I am spending the day in the kitchen chopping and prepping for the week or if I have a flare. Unfortunately I cannot seem to get a handle on my trunc and back so I wear compression bra's/vests/cami's 24/7... LE SUCKS!!!
Drinking - I was not a huge drinker before BC but I do enjoy a drink in social settings and occasionally my girlfriends & I would go out for 'girls night out' and I would over indulge
When I was having my chemo tx, my best friend & I would go out the day before I started my steroid pre treatment and we would have an adult beverage with lunch (sometimes two). I have made a lot a changes in my life regarding diet, drink and exercise but I believe in moderation , not deprivation.Burley - Have a blast next weekend!!! Where are you going to camp out?
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bdavis, I have numbness as a result of the node disection, and only on that side. No lymph edema, lets hope it stays that way. I know you are struggling with your decision with rads vs mastectomy, no matter what you choose, you will make the right decision and don't second guess yourself.
Burley, do you camp in a tent? Camping for me is the Marriot. Heading to the beach next weekend, can't wait to get my feet in the sand. I will also enjoy a couple of fruity adult beverages.
Thanks again everyone on you input on the numbness, I am now almost 6 months out from my axillary node surgery, still will hope for some return of sensation.
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Everytime I have had a surgery there is numbness. They do cut all of the nerves, muscle, skin, whatever is in the way, so it takes a while for the nerves to reconnect. Usually there is a return of sensation that is close to normal within a year, unless they cut you at an odd angle, then it can take longer. I had one cut that was from the center of my chest diagonally down and around to the bottom of my ribcage, and that took close to 2 years to return to normal. Of course everyone is different, but that is what my surgeon way back when said, and it seems he was right.
christine, I agree with you, the Marriot is a fine place to camp out. I wish my family agreed!
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Bdavis- Me two both my er/pr + very high. The alcohol ...I guess can cause the estrogen in your body to increase is my understanding so yes for me it is limited alcohol period. I do follow his rule (onc) and only drink one or two. You never really know though....they say this and that cause cancer. Do you remember years ago when they said coffee causes cancer. Now they say it prevents prostate cancer....I guess we have to live our lives and enjoy life the best way we can.
Burley- My white counts were down during chemo too. I did drink a beer or two when we went on vacation but they did not taste good:( I hope you have a great time camping. I hope you never encounter lymphedema either. The danger is only on my breast cancer side where the nodes were removed. Just take care of that arm where the nodes were removed and don't forget your bug spray. Enjoy those cold beers. Have Fun !!!
37 antiques- The feeling in my arm is much of what you describe ..gradually it has come back. Still a little numb but I hear more feeling may come over time but it doesn't bother me at all. Some people never get lymphedema at all. Crazy how that happens ...
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I am a very strong er/pr+ girl too (98%, what ever that means). I think alcohol, sugar, and fatty food are all recommended in moderation for us. Doesn't mean a juicy cheese burger and cold drink are out, just moderation, at least that is my thinking.
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chistine47....Amen !!! I think you just have to live the best life you can, but still indulge now and then. Like you said moderation.
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I agree, have whatever you want and as much as you can stand until you think you might feel guilty tomorrow. If you can be guilt free you can be happy, you are your best judge of what you need. I never met "they" but I don't think "they" know anything more than anyone else, "they" just got some funding to say something!
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37 antiques- I agree ..I don't think any of us could keep up with what is said to "cause" cancer. You just have to do the best you can for yourself.
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Hi all!
Hope you have a great time camping, Burley! I haven't been camping, I think, since I was in Girl Guides ( like Girl scouts!) about 30 years ago - too worried about bugs and creepy crawlies and my partners horrendous snoring - he def. needs a tent on the other side of the campsite!
It's a total minefield, isn't it, what to avoid etc with cancer - so many mixed messages! The coffee thing is a pain too - there was an article in our paper about more than 4 cups a day causing bc, with larger tumours to boot! Been worrying about this since I read it as I do love coffee! It never ends, does it!
Love, Sarahx
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