2010 Sisters
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motherofpatient--welcome! Glad you found us. I work with young children and I took a leave of absence until I am done with treatment. Chemo made me very sick and hardly able to get out of bed some days--there was no way I would have enough energy to keep up with the kids, nor did I want to be around all those germs! It depends on what type of chemo, what type of work, and even then, everyone is different as to what side effects they get. I always tell people that they should do whatever they need to do to get themselves better. This is time for your daughter to concentrate on herself and getting well. She is blessed to have a mom like you that wants to help!
I don't have any experience with the oncotype test, but others do. I was premenopausal (sp?) but chemo and the rads I had last year for colon cancer put an end to that. I have hot flashes, but am not too bothered by them, like others are.
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Hello Sistahs -
I've been MIA for awhile. Had my last AC chemo on Nov. 3rd; it was the worst and took me a long time to feel better. Even now I have good days/bad days; just really tired and can't do all the things I'd like to. I think I'm in a bit of a denial stage and maybe stayed off the boards so I could pretend I'm not a cancer patient. Sounds silly, but it's in my head.
I was really obsessed with the whole bald/wig thing, worried about what to do when I go back to work (not even sure when that is yet). I have a really nice wig that is a bit shorter of a style than I would normally wear, and it's a little blonder than I would prefer. After seeing a couple pictures of myself, I think it looks like a helmet so I don't like it. I have another wig that I bought from the TLC catalog, love the color, but it had SO MUCH hair on it, it looked like a cartoon/costume wig. I took it to the shop where I bought the blonde wig and asked the stylist to cut it. She took some thinning shears to it and shaped it a little, so it now looks much better. So lately I've been alternating between the wig, a scarf, and a couple of hats that I crocheted. It is cold and rainy here today and my head has been cold!
I met with my RadOnc and will begin in a couple of weeks. First I have to have a CT scan and a simulation. I am getting my port out on Dec. 1st; I hate that thing and can't wait for it to be gone.
Biggest decision now is when to go back to work. I'd like to go part-time and collect long-term disability for the difference, as I am the sole income for my family. Not sure how all that is going to work out. For now I'm on short-term disability with full pay thru Dec, so I could just stay home until January, but I kinda feel guilty for being gone so long (last day at work was July 2nd) and then to milk it just because I can doesn't feel right either. UGH.
Lastly, I need to lose about 130 pounds, DH needs to lose about that much too, and it's just daunting to think about it. I told him this morning that I'm not going to start any serious diet Thanksgiving week; that would just be a set up for frustration. But we need to walk more often and start making small changes (like stop buying ice cream!). Staying motivated is hard for me when I feel so tired all the time.
Thanks for letting me vent here. These are things I can't put on my blog because meddling family members would, well, meddle. Now, I think it's time for a glass of wine!
Blessings to all . . . I know we are all dealing with various SEs and stages of this bitch called cancer. We will beat it, but man it is a tough road.
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I started out with a small 7mm tumor, after lumpectomy it was 1.2 cm. Was told It was er+pr-and her2-. I suggested the oncotype to get a true reading on whether or not chemo was a good treatment for me. After receiving a high score which tells you the chance of recurrence w/o chemo and the change to triple negative in type I am real glad I got it. I have felt from the beginning of this journey the less non invasive tests. that are taken the better off you are. I was really trying to get out of the axillary node dissection, since my sentinel node was positive. After getting this high of score I knew more nodes needed to be removed. I also think without the test since the other 27 were clear they may have said chemo wasn't necessary cause we didn't know I am really TN.....Motherofthepatient That's the reason I got the oncotype dx Hope it helps.....SLEEP TIGHT LADIES catch you upon the sunrise.......
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YAY for Mrs nice....NO MORE CHEMO....gosh you still have so much on your plate...ya gotta slow down girl...one step at a time...you just finished a biggie.stop and smell the roses.
Have that glass of wine and relax...Thanksgiving is comin...enjoy the holiday and worry about the rest later.
we missed you here.come to visit us more often now.
wishing you pain free days forever.
I THINK ITS TIME FOR A GROUP HUGGGGGGGGGGGGGGG.WE DIDNT DO THAT FOR A WHILE...COME ON SISTAS....
God bless all of us.this bc sure does suk
K
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Tekyla: Yea!!!
My 5th of 6 treatments is Monday, it will be my second taxotere. First tax sucked, so not looking forward to #2.
Prayers to all my BC sisters.
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tiedknott-Well today was not near as bad as I had imagined. I guess everyone has kept up with me so very few questions we just laughed alot. Most of my family is on FB so I just post updates there and they all know it and can check it out. I know what you mean about BS not being as bad as loosing your daughter. I lost my 4 1/2 yr old 15 years ago and this is just a bump in the road compared to what I had to deal with then. Although your whole in your heart is much fresher than mine. I figured after what I have been through this is just another thing to deal with in life. I know it will all be fine when I am finally done, which my treatment will be finished mid Jan. It cannot be fast enough. I do find myself getting very emotional though which I have not done since loosing my son. But as they say this too shall pass. Sorry you have to be here with us, but it is a great bunch of women with lots of support.
Tekly-congrts doing the happy dance!
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I'm in on that group (((HUG)))!
Mrs Nice--glad to have you back with us, but I understand why you were MIA. I bought 2 wigs and have never worn either--they just seem so fake to me. I wear scarves all the time. Once ina awhile I'll wear a crocheted cap that my mom made for a quick trip to the store. Although I like the caps around the house better because they are comfy. I put on my wig today, just to give it another look and I went "duh!' I have no eyelashes now so it looks even more fake!
Yay to being done with chemo! That AC is some tough stuff!
I won't give up my port until I know I'll be done with scans and such for more than 6 months. I just prefer to use the port instead of the veins. I've had it for over a year and a half and I don't even notice it anymore!
Why hurry back to work? Don't think of it as being lazy or slacking--you deserve some time to just enjoy feeling good again. The time you've taken off was to go through a brutal treatment--now how about a little time to do some nice things for yourself and your family? I am seriously considering extending my leave to the end of the school year, and just going back when school starts next Fall. After 2 years of tx, it's going to take me awhile to get my strength back, and I'd just like to live life a little--and get my house back in order! Plus I have my grandson to spoil and a new one coming from an orphanage in E. Europe in the spring (hopefully!)
Anyways--glad to hear from you again--keep us updated on how you are doing!
Teklya--Did I ever say congrats to you yet? If not CONGRATS!!
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Hello ladies. I'm back after a few days of graduation functions for my son. He is at schoolies now ( dreadful Australian tradition) so, apart from worrying myself stupid about him it is all back to normal now and here I am. I am so exhausted I am almost looking forward to TX 3 on Tuesday just to have a break! Wow, it has been busy here. Welcome to all the newcomers and sorry we had to meet this way. Teklya congratulations, what a milestone. Love to all..
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motherofpatient- Sorry about your daughter. I concur with what Omaz. I too did not have the onc test being HER2+. I too went into chemopause (Hmmm now 9 weeks since last period or is it 10). My onc said it won't come back but I'm 49, almost 50.
As far as working. Well if I hadn't lost my job I would still be working. So far my SE haven't been that bad at all. I haven't had the fatigue others have had. I've had 3 treatments of 6. I'm not sure if this will continue to be this easy but I hope so. It's very hard to predict who will get SE and who won't. I eat healthy, good healthy weight and work out. I know others that can say the same thing and yet are having a more challenging time. It's really hard to predict.
My hot flashes are very minimal. I get them in the early morning hours. I just kick off the blankets and go back to sleep. I don't get all drenched like others. I have had no mood swings.
If your daughter is younger there are drugs used to suppress the ovaries. One thing to keep in mind is if they doctor suggests Tamoxifin for hormone suppression therapy. I would question him/her on that. Many times women who are triple positive do not metabolize Tamoxifion well. This is why suppressing the ovaries and using an aromatase inhibitor instead is recommended by some physicians.
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i got that book too and have started to read it!
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lago-after radiation i will go on some form of hormonal therapy. You mention some triple positive ladies dont metabolize tamoxifen well, how does one know if they do or dont. Is there a test for it, can u imagine taking a drug for 5yrs and it doesnt do anything......gosh!
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Actually it's SOME triple positives don't metabolize tamox well. You will have to check with your doctor as far as how they can test, if they can test. Yes I agree that taking tamox for 5 years and finding out that it did nothing but also put you at risk for things like uterine cancer would be upsetting.
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wow- last chemo Teklya- I think we should all stand up and do the chemo Dance, in fact do it in the front yard and make your neighbors think you're crazy. Tht's how happy I am for you. At our Cancer Center on your last day all the nurses sing you a song!
MrsNice- please don't worry so much about your weight. You've been through so much and there is time for all of that when you have been demed cancer free. Just try and watch how much goes in , a little ice cream is so much better than none. This road isn't easy for any of us plump gals, don't be hard on yourself.
Sherric-I feel for you, I know the break in your heart is real and the way I have described mine is that I know it will never close up even when I am old and in a nursing home, I will die with a broken heart. But I also know the crack gets smaller and easier to handle. I wish my girl could be here with me through this battle, and I know somewhere she is with me. I have a wonderful husband of 30 years and a 24 year old son that is just like his Dad. And sounds like you a huge caringfamily. I tried the chain thing then they get jeaslous which one I called first! Caring Bridge saved me! and facebook. I have 4 sisters ,2 brothers 10 nieces and nephews and then the list goes on down. Having a close family is assume though! Many Many Hugs and love to you!
MotherofPatient- So sorry you have to go through this, as a parent we all wish we could take it for them. My sister in law was in the clinical trials for herceptin. She is a 6 almost seven year surviver. She is so thrilled they releashed it for her2 cancer. She calls it her miracle drug. She had a DMX and total node discetion and she was back to work as a massage theropist in 2 weeks, tucked her drains in her pockets and did her thing. i am sure everyone is different. I was back doing hair 2 days after a 6x6xx4 cm excisional luumpectomy (partial mx) and will be back to work Tuesday after SNB on Wednesday last week. Hope this helps
Grannydukes- Hope you had a great time at you GDs wedding. Isn't it nice to have an evening that doesn't center atround BC. I hope you danced the night away
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Lago and red - There is a test they do do to see if you are a bad tamoxifen metabolizer - I think they look at the genetic makeup of a certain gene that metabolizes the tam. I'll have to look the test up but I remember reading that somewhere.
Here is one website:
http://www.arupconsult.com/Topics/Tamoxifen.html
"Tammoxifen is an anti-estrogen drug used in the treatment of estrogen-receptor positive (ER+) breast cancer to reduce the risk of recurrence. Mutations in CYP2D6 may lead to altered drug metabolism and reduce the concentration of active metabolite (eg, endoxifen) available. The reduction in active metabolite concentrations may reduce likelihood of response, manifested by an increased risk of recurrence of breast cancer. "
If your state has Private MD Labs you can order the test yourself apparently for $700
Tamoxifen P450 2D6 Genotyping
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Mrs. Nice - welcome back! and Congrats on the finish of chemo! I'm only 2 more myself and can hardly wait!. Give yourself as much time as you need and give yourself a pat on the back for making it through what you have already accomplished. Hoping you have better days ahead!
LadyinBama - Hoping your second Taxotere goes better. Day 3 here and I'm doing pretty good. Some tiredness, bad mouth tastes and some dizziness but way better than the FEC's. Good Luck this time!
Motherofthepatient- Welcome! I was just post menopausal when by a month or two when I stated chemo and bang it was back with a vengeance with hot flashes/night sweats. Still with me but I'll be soooooo glad when that part is behind me. No onco type score was even needed for me as my onco said with my facts - grade 3, size, and started in sentinel node I needed chemo for sure and then Radiation. If you still have more questions please feel free to drop by and post all you like. Hope you get some of the answers your looking for. Also yes I still work but only 2 out the 3 weeks of my chemo. I take chemo on Fridays so the l0th day Monday I return to work part time.
Cathy
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Cathy, start taking ibuprofen today. The body aches are coming tomorrow.... :-(
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MsNice - Welcome back you have been missed, but I completely understand the thinking that kept you away.
Motherofthepatient - so sorry you are here, but this is the best place to find information, encouragement and support. No question is to small or silly to ask or too difficult answer. There is a treasure trove of information among this group of ladies.
I am in on the group ((((((((((hug))))))))))
This last week has been a rough one. I had my Aredia on Tuesday and have had radiation treatments on Wed, Thurs, Fri. and this morning. This mornings treatment left me feeling sick and whenever I try to eat or drink anything it feels like a rock is stuck in my chest. I have been really tired and still trying to do at least some of the things that I feel need to be done just to keep going. There have been more than a few days I have thought I just cannot do this. Usually it is at night when I have woke up for the 4th time drenched with sweat. Anyway I know I have no choice in the matter so I just change pjs and go back to bed. It is a good thing I have so many pjs! On top of all of this I have been getting the hiccups a lot! They are so annoying and about the time I think they are gone, they come back again. Has anyone else had problems with hiccups? We are also dealing with some juvenile delinquents that do not like it that they cannot fish or throw rocks in the pond that is behind our house and so they come ring the doorbell then run away when I am trying to get some rest. My DH is ready to build a jail and throw them all in and throw away the key. The pond is posted as private property and no fishing, wading, or swimming or rock throwing is allowed. The pond actually belongs to our Home Owners Association and these kids do not even live in our subdivision. Don't know why they have picked our doorbell other than the fact that I am generally the only one home during the day. Wonder if I could rig the doorbell to shock them pretty good when they ring it? Oh well, such is my venting for the day. So glad you sistas are here.
Hope everyone has a wonderful Thanksgiving and gets to enjoy being with family and friends and all the food!
Joy and blessings,
Amy Jo
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Amy - Night time is the worst hands down. Hang in there.0
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AmyJo!! I am all for the shock the crap out of the little creeps when they ring the bell. I'll see if I can find one for you online. I am sure they have gags like that available.
MrsNice-so glad you are back and still moving right along!
Attention all: This is short notice but I rented a 6 BR house in Duck, NC (Outer Banks) from 12/3 - 7. It is gorgeous. Has hottub and fireplace, two kitchens, etc. Anyway, several folks from the 'Older women' forum and our dear GrannyDukes are coming. House has 6 bedrooms, check it out here:
http://www.southernshores.com/rentals/property/993
We are all arriving Friday 12/3 and the last one arriving is at 5. I am renting a van/SUV so the more the merrier! If interested, PM me.
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What a fantastic idea, Barbara!! Would love to join you all but not in the cards for me right now. I will be there with you all in spirit!!
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Me too! Have a great time.
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Barbara A - I wish... what a nice get away! Take lots of pics to share and have a wonderful time!
Cathy
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BarbaraA- OMG you party animal! Fabulous! Wish I could come. Hopefully there will be another opportunity down the road. PLEaaaase promise you will take photos so we can all enjoy your party.
Amyjo- Oh, those little gangsters don't know what they are dealing with ringing on your bell! Do they know what thin ice they are stepping on with a woman going through cancer treatment? I say you should definitely forget your wig when answering the door! My own sweet, proper mom once had a problem with a neighborhood bully when my brother was young. Sweet, proper mama chocolate-dipped some little chunks of Ivory soap and handed them out to the little monster on Halloween. Still makes me laugh! I'm sure we can come up with something that will get their attention!
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Barbara A what a great idea. You guys have a great time wish I could join you, but will be there in spirit.
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Barbara, So wish I could join you all. Take lots of pictures for us to enjoy.
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BarbaraA - I so wish I could pack my bags and be on my way. We expect to see lots of pictures. Everyone that shows up, have a wonderful time.
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Barbara--can't wait to see the pics! I'm sure you will all have a great time!0
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So much for no SE's after my taxotere tx. The joint pain started about 52 hours in. Started extras strength Tylenol and no help. Went to Tylenol 2, just took the edge off. At 2 am I took a sleeping pill and a Tylenol 3 and it just gave me 3 hours sleep before I woke in pain. Must call the onco to see what they say but this sucks and I'm so afraid of getting hooked on something stronger. Anyone have this problem with taxotere? How long will this last?
Cathy
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Cathy: Tylenol never did sh*t for me. I take Aleve but do ask your doctor if it's OK because it can thin your blood. Be sure to take it with food because it can do a number on your stomach lining. It does take the edge off for me although not completely. I don't want to take any narcotics either because I already have a constipation issue at times with tx and they make me drowsy.
I chose Aleve over Ibuproben because you are taking fewer pills (2 a day max) and it's easier on your stomach.
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Barbara A - I would love to come. I live in Raleigh, about 2.5 hours away. I have a RO appointment this morning and will check to see what my appointment schedule looks like. and let you know if i can make it. Will have to see what she says about some issues I am having and what my DH has planned. You are so kind to do this. Thank you. I'll let you know this afternoon.
Joy and blessings,
Amy Jo
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