Cytoxan Taxotere Chemo Ladies- February/March 2013
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Way to go FDM!!! You did it! Happy Dance! Good luck on the rest of your treatments.
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Thank you all. Today I vomited on myself and I have to take Benadryl tonight and more steriods. I can breathe! I meet with the radiologist on Monday, I feel like I'm half way through the treatments. Slowly. The big decision now will be to do just the Oophorectomy or go for the "full spay with the hysterectomy too". I will be discussing with a OB/GYN in the next coming weeks. I hope all are doing well on your treatments.
Be an advocate for your care! If you have to change oncologist it is scary, but sometimes things have to be done.
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Congratulations FDM great spirit thanks for sharing pics. I just had the discussion about oopherctomy full spay today. I will have an ultrasound when chemo is done and a biopsy if those look good then just ovaries..... You would think after all this that I would not find that such a big deal but I am worried about surgical menopause.... glad you are breathing easy.
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I've been out of the loop -- reading everyone's posts, but not feeling good enough to join in. TC#5 has wiped me out -- achy upper body muscles/joints and surgical sites, on the edge of nausea/diarrhea much of the time, breathless, hard to find any comfortable position to fall and stay asleep. It's not intense discomfort, but it's constant and very wearing. I'll live through it, and get through TC#6, too; but I have to remind myself 20 times a day to be grateful for these effective drugs and not whine (out loud)!
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SC -- my MO referred me to a physical therapist who specializes in lymphedema diagnosis and treatment. She did an assessment and gave me some gentle anti-LE exercises to do 2/day. I've seen her 2/week for manipulation/massage for both the LE and shoulder issues I've been struggling with for weeks. The visits and the exercises have helped both conditions -- even though each chemo has pushed me down, overall I feel like I'm gaining ground on both issues.
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kli-fairydogmother- why are they suggesting removal of ovaries? Are you premenopausal? I have an gyn apt scheduled in Feb. so don't know about it yet...my MO says not needed...?? Does he know?
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audra67- I'm premenopausal (36), because my Felix (tumor) was so ER/PR positive, Ki-67, and family history, hence the oovary removal. Of course this will not give me tamoxifen and I will take some other hormonal blocker.
Bluegrassha… I hope the PT helps with lymphadema that is the one thing that scares me during this journey. One of the major things my team tells me if I get a cut, nick or anything on my left arm put neosporin on it and bandage it up.
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I might be in your same boat then, as I had very high er/pr and ki67 too and 46 but premenopausal...hmmmm
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Ladies with LE--- The LE Discussion boards here are very helpful as well as the information on the Step Up Speak Out LE website. here is the link for that website http://www.stepup-speakout.org/. I wear a sleeve/hand gauntlet anytime I fly even though I do not have LE. I have chosen to wear the sleeve/gauntlet even though my BS said that he did not think I would develop LE because of the low number of nodes removed. I know gals wear their sleeves/gauntlets whenever they drive through different alttitudes.
Wishing everyone a great weekend and hope those with side effects are feeling better today.
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Sisters! I have been out of the loop since our Orange Juice discussion and my frozen water pipes. Finally, the water is back on and there was no flood. I am reading everyone's posts now to catch up! The SE's of this TC 3 seem to be lasting much longer in a kind of low grade chronic way + fatigue is way more profound, BUT the really severe/acute SE days were over sooner. I continue to find that the emotional effects, including winter cabin fever, exacerbate these effects, so today I pushed myself to go to my writer's group. (& I went there bald) I came home and collapsed, but the interactions and human connections took my attention off of my body and cancer for two hours! I hope everyone is having a pain free weekend. momat
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Go momat! I'm having a similar reaction to my TC 3. Plan to go to book club tomorrow and focus on something other than cancer.
Hope you feel better soon bluegrassharp!
Sometimes I think the whole cancer thing hasn't hit me as hard yet because I'm in the midst of actively doing things about it. Maybe in the summer or fall the full weight of it will arrive in a new way. It definitely makes you reconsider your life, choices, and priorities.
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Audra & FDM - I too have a very high ki67 (40%). It worries me greatly but the MOs I talk with have differing views on it. One said it does not fit with my overall profile of a .7 mm tumor and mitotic score of 1. Another said the research on ki67 is all over the place and it's too unreliable to be of any use. My Oncotype came back at 24 which seemed to surprise them as they expected it to be much lower. I'm 52 and premenopausal but the chemo will kick me into menopause. How much concern have your MOs over your ki67?
Momat - I cannot agree more. I was in bed for days with a low WBC and finally exercised today. I feel so much better. It's been a cabin fever nightmare. On the other hand, I am hoping to be coming out the other side when the weather gets nice and have a decent summer. I suppose if my life is going to suck, now is the time to do it.
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Thanks Bluegrass and Melrose for that link. I did see the lymphedema specialist, she thinks it is very early and so now I am wearing a sleeve and the glove has been ordered for me.
It's always something! Hang in there ladies...we got this!!!!
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From what I got from my MO, the ki67 is a piece of the puzzle, but I don't think they put as much weight on it as they have in the past; maybe since they now have the onco test, they rely more on the onco score and less on the ki67 than they used to. That's just the impression I got anyway. I was a 21,low intermediate. My MO left it for me to decide on whether or not to do chemo. The first MO I had was not even going to consider doing the onco test bc he was so sure my score would be high...
I had a hysterectomy/oophorectomy 8 yrs ago (ovarian cysts and fibroids) and it threw me into menopause, so I don't have to deal with that. If any of you have to have the surgery done, for me, it was pretty easy. It was a laproscopic thru belly button (vaginal) and after about a wk or so, I was feeling pretty good. Takes a few months to get over the general fatigue, but really I don't remember it being bad at all. Dr immediately threw a hormone patch on me, which I had a reaction to; I only took HRT for a couple of months despite my Dr wanting me to take them. I remember her saying not to worry about taking them; the risk of getting BC is very low. My menopausal symptoms were pretty minor. Not to sound discouraging, but I guess it makes me feel like I tried to do all the right things and when it comes down to it, sometimes it seems as though it's just a crap shoot. We just have to do the best we can with the resources we have and hope for the best outcome. I guess I will have to lose some weight when I am done with TX and see if that will help with my estrogen levels....I don't know where else it could be coming from! MO says body fat and adrenal gland, if you have no ovaries.
BGH, Hope your SE's calm down for you!
I am having more SE's this 3rd round, too.
Enjoy your week-end, ladies!
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yowzers if you all are considered high with a Ki67 score of 40........mine was 76%
grade 3 AND triple negative...so extremely aggressive. I was Dx'd in Sept and originally wanted DIEP which could only happen in Dec....breast surgeon said no way could I wait that long - I had to have immediate surgery and start chemo ASAP - MO concurred esp since the cancer was triple negative - chemo was my only defense against this new cancer.....As for removal of ovaries - both my surgeon at Sloan and my MO said there was no medical reason to do so if my gene tests were negative. Gyno on the other hand wants them out and if I don't have them out wants me examined every 6 months (pelvic US). I told this to my MO (whom I adore and trust implicitly) and she said, "not necessary." I am def conflicted......given this is a reccurrence I am terrified if getting another cancer or mets (my mom died of bc bone mets). Just feel like a horrible black cloud of cancer has been hovering over my head since the age of 14 when my mom was Dx'd
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SchoolCounselor---FYI: I hope you get that hand glove/gauntlet very soon. The mere wearing of the sleeve only can cause swelling in your fingers. Talk to your LE specialist to see if you should be wrapping your hand also....
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Warrior, "cabin fever nightmare" is right!!!! Hope your WBC is rising now.
QuirkyGirl, I think you are on to something. I think that right now we are actively engaged in the process, the learning, and the facing of chemo. I suspect, at least for me, once this is over and all I have to do is to just wait for those periodic scans and dr appointments, there will be an emotional backlash of sorts-- after the inital euphoria of being free-- a kind of post-partum. When I am in crises, like the death of my parent, I go on autopilot and just get things done, but once the crises is over and I am quiet with myself, boy, then the mourning begins, for instance.
Cancer has definitely made me relook at my life, choices, and priorities. It has taken over my body for a while, but also my life-- job, money, how to live in the world.
OOPS!! Looks like SE's still coming around: A new one just in--- will be spending day in bathroom Ladies. Just when you think it is okay. Stomach issues just presenting now.....
Still reading your older posts, momat
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SC -- did your LE consultant give you exercises to do at home? If not, I'd be glad to send you a copy of mine. They are so gentle they can't hurt; and they sure have helped my arm get back to normal and stay that way, despite the fact that I often negotiate the 10-mile 2,000-ft elevation trip between my house and Ft Collins.
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Today, I noticed a thin whitish curve-shaped line almost where my cuticles meet (most of) my nails...does anyone know if this is the start of my nails letting go? If so, anything I can do?
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bluegrass- I wouldLOVE the exercises! I'm seeing a pt / lymph specialist in 2 wks but have numbness problems a lot with that arm- thanks
Virginia / warrior- ki67 was high also -
My Oncotype was 21
What I was told is ki67 used to be one of only tests now the Oncotype Dx tests that with I think 21 other factors
Keep the faith- yes hard to know what to do about ovaries then and I'm sure Gyn vs
Mo will have different views
I was reading today that medical inducement of menopause causes anxiety and depression- so I finally feel ok to be feeling that at times- thought it was just the cancer or chemo but apparently a third reason too- no wonder I have those days - hoping they go away in time - and they can take the hot flashes too!!
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VirginiaNJ - The cut off for a high ki67 is actually quite low. Something like 15%. That places us both high but I've seen women much higher. Prior to the oncotype test I would not have been offered chemo. In your case, chemo is the only clear choice. Although I hate hate hate it, I am glad to lower my recurrence risk. I too watched my mom die of cancer when I was a child. I remember what the chemo did to her. In retrospect, had we known, it may have been better for her to skip it and live more peacefully. I always knew I'd have BC one day.
KeeptheFaith - Unlike you, they thought my oncotype score would be low. I've learned not to ask for or listen to predictions. They're as accurate as the weather forecasters. I am glad for the test. Who knows where I may be down the road without it.
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keep- the halo around my nails has a black tinge to it - but my nails have not fallen off or peeled.
Warrior
so sad we have a similar history. I waited for the day I got cancer since the day my mom got it - so I literally have thought about cancer every single day of my life since I am 14 (first dx was 40). I often wondered if I wished it on myself . I do have to tell you I was completely and totally Gobsmacked by my reccurrence - it has really devastated me and I dwell on my mortality now....it's been horrible. I def don't feel like I will beat cancer - it's a horrible defeatist attitude but I just can't pick myself out of the dark place ... Even WITH the help of an antidepressant lolSigh.....perhaps I will when I feel "normal" again.lol,but I just fear I won't ever....
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VirginiaNJ - I wish I had something of greater substance to offer as I too would be blown away with a recurrence. I am not minimizing your fears but as I look at your Dx, it in no way looks to me like a death sentence. 20-30% of stage 1 BCs have a recurrence. If it is localized it is treated and you've taken clear and decisive action to improve your prognosis. I remember when I was trying to decide on a BMX and my MO said that a local recurrence would most likely be detected as my original tumor was. A systemic recurrence is more concerning. This my completely uneducated opinion. Let's keep moving forward an conquer what our mothers could not.
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Virginia, I feel sad that you are going through this. If I let myself think too hard about how so many people in my immediate and extended family have died of cancer, including breast, I become paralyzed. I know about the dark place though. There are no "cheerful" words to help I know, but somehow, somehow, I hope and pray you find some light today, some sense of possiblity. (I just made a contact with a oncological therapist.)
Ladies, what is the ki number you are all talkiing about?
momat
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Warrior and Amy, thank you so much for your comforting words... I keep telling my onc how terrified I am and she is very reassuring. I will just have faith in her as she has taken wonderful care of me since I was first Dx'd. I really do hate how I can't "turn it off" (thinking about cancer all the time).
I did see a psychiatrist who specializes in women with breast cancer but she's in NYC so not convenient. I have to decide if I want to seek someone closer. perhaps once I have my exchange and I get my hair back and I go back to work I won't feel as despairing. (Believe it or not I am mostly a very very positive upbeat person who is kind of Pollyanna--ish....but this whole cancer thing is really testing me).
Hugs and THANK YOU again for your kind words of support. It's so comforting to have an outlet with people who truly understand!! xoxox
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Ladies - you really do need to be trained to do the LE exercises so you don't move fluid the wrong way. Your LE PT should do it & then train you. Go to the Step Out link that Melrose provided & spend some time there. There are also several good LE threads here on BCO under Lymphadema.
SC - Melrose is also correct about the dangers of wearing a sleeve w/o a gauntlet.
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Hope everyone is doing well and staying warm. Thinking of each of you and sending lots of hugs and good thoughts!!!
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MinusTwo, you are correct about wearing a gauntlet/glove to prevent your hand from being swollen. I went to a LE therapist and it was great. My OS gave me a prescription for it and it is covered by insurance. She taught me how to exercise myself and prescribed the sleeve and glove. I used the sleeve for a couple of days and my hand got swollen. Use it with the glove. My therapist told me to use it whenever I felt it was swollen, to prevent LE.
VirginiaNJ, I am so sorry you think about C all the time. Don't blame you, I do too and I am the only one in my whole family who had it.
I always try to think about a friend of mine who had C 6 times and he is doing great, filled with energy, hair and all. He is my inspiration!
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Hi ladies.. Thank you! My hand did get swollen so I have taken off the sleeve until Wednesday, when my glove comes in. I saw the physiatrist today for my back pain and she ordered an xray. The back pain is caused by arthritic discs and moderate to severe scoliosis. I start PT on Wednesday 2ce a week. I meet with my Lymphedema specialist 2ce a week and then all the doctor appointments in between. Fun!
I bumped into my BS and she said she had called the MO about my racing hear , palpitations and shortness of breath. He thinks it is probably the constant back pain that has elevated my heart.rate. In any case tomorrow I go for my echo. These doctors appointments are wearing me out.
I see my MO post chemo on Thursday, I am assuming it is for the tamoxiphen conversation. I just feel there is so much going on that I want resolved before I add another medication into the mix!
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Schoolcounselor - I have the same heart, breath issues and no pain as a potential cause. As far as the tests showed, its just chemo having its way with me. They didn't prescribe anything so I just go slow and take it very easy. I had to rest in the grocery store tonight.
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