Calling all TNs
Comments
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I'm glad I didn't get A either
I had enough SE with the ones I got.Glad to see you're feeling so good and looking forward to your pics.
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I'm glad I didn't get A either
I had enough SE with the ones I got.Glad to see you're feeling so good and looking forward to your pics.
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Had Taxol #4 yesterday and feeling ok today 8 more to go. The dose got lowered from 150 to 140 due to he neuropathy starting in two toes on each foot. Feels so wierd, like they are asleep. I keep wiggling them thinking they will "wake up" Hoping it does not spread any further. Anyone else have had that, does it go away after a while?
Hope60 -sorry you have to be here with the rest of us but glad you found us. chemo is a scarry thing but the only way to kill this crap running through our bodies. You can do it and we will all be here to help you through.
Jen
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Hope60,
The chemo time-frame is pretty typical. When I had my initial consult at Sloan-Kettering I was told I had an 84 day window for start of chemo. As I recall it had to do with the cell division; it wasn't just an abitrary number-- it had its basis in cell physiology.
Nonetheless, I wanted to start ASAP, to feel I was being pro-active and exhibiting some semblance of control with a very out-of-control diagnosis of BC.
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JenC, I have the toe thing also, so far one toe on each foot, and like you I'm hoping it doesn't spread. I hit a wall of fatigue on my fourth day after the fourth Taxol treatment, so unexpected because I had felt fine after the others. I'm in the Avastin trial, and may have also gotten the Avastin when I got the Taxol. I hope you feel good this week.
My RBC is low and I wonder if there is anything I can do about that? Is it okay to take iron? I was a vegetarian for ten years before getting this disease, but if eating red meat will help the RBC and energy level I will become an eager carnivore. I've tried a steak now and then and my body does seem to really want it.
hhfheid, how are you feeling these days? I'm a horsewoman also, and I'm back to riding but I can only have the energy for short rides and not what I did before all of this. I'm with you: F**** cancer. I hate that word cancer.
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mitymuffin..I ate steaks and other meats while doing chemo also..I figured it was a good thing to do..plus I liked it! Plus my DH started doing the grilling which was an extra bonus! He still does it..we just tell him how awesome everything tastes when he does it..and that "mom" (me) will just burn them...! He thinks he is a master griller now! Funny stuff.
I just ran 3.2 miles this morning for a United Way fund raiser..what fun! My legs feel like jelly but it was worth it...
Last night someone who I hadn't seen for a while asked me if I was in remission...I just told them I hoped so...how do we know anyway? I'm afraid to say that I am...
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I had my first 12XTaxol last wednsday and my kidneys are aching and my urine is brownish. I went to see if I had an infection yesterday and they said no. They hurt so bad I'm taking pain pills for it. Has anyone else had this kind of pain in their kidneys from Taxol. My Onc won't be available until Monday.
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Laurajane: Sorry I can't help, I did 12 taxol but don't recall any kidney issues. Could you be dehydrated? Hopefully someone else will be along shortly.
Titan: You raise a good point. Now that I've finished treatment, one thing I get asked a lot, usually by people who have no experience with cancer, is, "Well, is the cancer all gone?" I usually say something like: "Well, I hope so" or "There's no evidence of disease" or "so far, so good", sometimes concluding with "the awful thing about cancer is it can always come back, you just don't know for certain." I get vacant stares or worried looks... How do others handle this question?
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Yeah, it's hard to know what to say. I usually end up with so far, so good.
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I don't know. The word remission is a little scary to me. Like it implies that it is lurking in my body waiting to wake up. I like to think that I have no cancer in my body, the word remission, to me, feels contrary to that thinking. Maybe that is some sort of denial, but that is okay with me! It doesn't mean I am not taking care of myself and seeing my onc etc. People generally just ask how I am doing. I haven't specifically been asked about remission, but I know if they did, I would silently freak out inside lol.
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Mitymuffin, I was anemic when I was on AC and asked my oncologist if I should take iron. They gave me a blood test and then called and said no, iron would not help my type of anemia. So you might want to ask them about this test. I thought iron always helped, and I definitely think you should eat steak if you feel like it! I also craved meat during that time.
Kad 22, I finished my 6th Taxol and was really sleepy a couple of days last week. I couldn't figure out why, but now I wonder if the fatique if starting. I will see how this week goes. I have been lucky and havn't had too many SEs yet. Your retreat sounds like fun! I would like to go to something like that.
Laurajane, I'm sorry you are having kidney pain. I havn't had that, but I would try to increase your fluids and see if that helps any. Hope you can talk with your onc early on Monday.
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I guess I am in complete denial--When someone asks I just tell them they got everything and I am doing great and they seem releived. I can't even say the word remission--I have to believe that it is out of my body because I cannot fathom another go around with this disease. For me it's better to believe it's gone, take the necessary steps to remain healthy and avoid all things that put me in a "cancer" state like before. That is easier said then done.
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There you go MBJ! That is exactly what I mean! I know I said denial, but I am not sure that is correct either. I am one of those who believe in manifesting and the power of suggestion. So I choose the positive thinking route. Not sure if that is exactly denial. It doesn't matter. It is what I have to do for my sanity.
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Hello Ladies!
Holly Geez! There's a lot of action on this thread! I must keep up. I am finally getting over my AC hangover. Still feel tired and in the dumps. I hate it, but I can tell I'm starting to feel better. It usually takes me a week.
Tatan - I have not told the radiologist that I indeed have cancer, but the doctor knows! He is my GP! Unfortunataly, I still have to deal with him. He doesn't even try to keep up with my reports. Once he asked me how recent ths lump was!? I was flabergasted! I told him I saw you in September 09, don't you remember, that this isn't very recent?! I checked my chart, and he didn't write down any of my breast concerns that visit. After I'm done with chemo and surgery and all that stuff, I think I'll be shopping around for a new GP.
I am scared of starting Taxotere! i don't want to get an allergic reaction! I hope it won't beat me up like AC does! I will ask my onc. about Glucosamine. It must help with body soreness?
Take Care,
NannaBaby
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Titan, very clever of you to convince your husband he was the master griller. I do think everything tastes better when someone else cooks it.
Lynn18, thank you for the information on the blood test for iron deficiency. I suspected there might be a reason they weren't suggesting iron, and that may be it, but I will ask about a test.
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I'm sorry Mitty that you are having kidney pain...dang.isn't enough that you are taking chemo and dealing with the "normal" SE"s..The only thing I would suggest is drinking alot of water but you are probably already doing that..I hate it that you are pain though...that sucks.
Cydz...OMG..you said exactly what I was thinking! When he said "remission"...I just felt like screaming..I don't want "remission"..I want to say I'm CURED!....But I guess we really can't say that can we...darn!
Like the rest of you I just say so far so good also..People that see me all the time don't even ask any more..it is the ones I don't see as often.
Nannababy..I was scared of taking taxol! Because it was new and different..but from reading on here and other place Taxotere is the thing to do! I just had taxol one year ago and now "they" are onto something new...good luck with it! Have you looked up the possible SE's from it? It is probably similar to Taxol..
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I just got back from bringing my youngest daughter to college - the house is going to be quite. I know it's a good thing for her and I'm really, really excited, but I am sure going to miss her.
Laurajane - thanks for taking the time to get the information on hotflashes - I would be curious to know more. Sorry to hear you're suffering with Taxol pain. I'm sure you're already drinking a lot of water, but I'm sending you a reminder to drink, drink, drink. I suffered with low back pain during the Taxol infusion, then no pain for another two days, then terrible pain in my muscles and bones all over by body - worse with each infusion. Strangely enough when I did feel better, it was much better than the AC.
Workmother - I didn't do dose dense Taxol, but did find that the effects were cumulative and that I felt more exhausted as the treatments went on. I found that the Taxol had different SE's to deal with and as bad as it was, it was better than the AC. With that said some women do wonderful with the Taxol.
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Jenn3...we sent our youngest to college last fall..I cried pretty much the whole way home...but my son said I was an emotional wreck last summer anyway and that is true...your house will be quiet but you will get used to it...then you have to get used to them when they come home again!
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Man, you spend the day out boating and come back to a ton of posts! It's hard to keep up.
"So far, so good" is my typical response. I don't use the word Survivor or Remission. Both make me feel jinxed. I also don't wear my "survivor" clothes for the same reason. I'm sick of pink and the whole pink ribbon subject.
mitymuffin,- I drive a father/son 14.2h AWR Sport Pony pair (as you can see in my avatar) but take time off in the summer to switch to boating. I showed CT, hunters, fox-hunted side-saddle (all pretty low-key stuff) and now just pleasure ride/drive. Just got back from a month in Acadia with them.
I have a pinto Oldenburg (Art Deco bloodline) and pinto Paint/Arab cross also. Two weeks ago someone dropped off a 35.5 inch mini in my yard. So, I guess I have about 4.1 horses now.
How about you?
.
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Darn it Titan... there you go using my brain again. Ditto on the college thoughts...
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Ok, we also sent our youngest daughter off to college last fall. Just like you, Titan, I was an emotional wreck. I couldn't even go with as I was in the middle of chemo and my onc didn't want me to travel that far away, Minneapolis to St. Louis. THAT was tough. Thankfully, easier this year, she just left this weekend as well.
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I have never used the term remission (hat is almost as scary of word as Cancer) because in my mind, and per all the tests I have endured, I am cancer free. That's what I say I am. but I am a survivor and will use the pink ribbon stuff. For six years I have had a pink ribbon on my car.
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Yes, the house is quite and I have heard from so many people that it's easy to get used to, then when they come home it's noisy and something to get used to again. Her roommate seems to be extremely nice and very much like my daughter - they met during prep and changed their rooming request to be together. I think it'll be a good match.
I feel awkward wearing a t-shirt or pin and I don't know why because I am willing to talk to anyone that has questions, support and sit by someone who needs support, but don't like to wear something that says I have/had cancer with the exception of the pink ring (much like the bracelet). I wish I could explain the feeling, but I can't. I don't hide from it, but am uncomfortable in the clothing. Maybe by the time October (pink month) comes around I'll feel better and wear something while doing volunteer work.
Meece - I'd love to have a magnet on my car, but it seems that we have magnet thieves in our parking garage at work. Very frustrating.
Have a great Sunday.
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Taxotere has commonly been used in Canada for some years now. It's a taxane like taxol, with similar SEs.... except one study showed that a small percentage of women on taxotere suffer hair regrowth problems.
Jenn3, I know what you mean about wearing the survivor clothes - I feel the same way right now. I don't feel like calling attention to me as a cancer survivor, or being defined in that way. (For same reason, I never felt comfortable going "topless" when I had no hair.) Maybe in time, I'll see it differently.... who knows?
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I have pink ribbons (some magnets, some cloth) on my vehicles, (including my carriages). I have a pretty Italian silver ring I still wear occasionally with a tiny rose gold pink ribbon dangling from it's band. I have another ring that reminds me to take "One Day at a Time".
These items quietly support the subject. I am a peer mentor. What I am no longer (as) willing to do is wear the stuff that essentially says:
LOOK AT ME--- I HAD/HAVE BREAST CANCER. I'M A WARRIOR/SURVIVOR/VICTIM/ (name your adjective)..... you get the idea.
I looked good in scarves, had tons of very attractive ones, and will probably still wear them on occasion; I viewed my look more as a "style" than a diagnosis.
And yes, I still say f*ck cancer!
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hhfheidi: I like your attitude!!!
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I have some clothes from last summer that I refused to wear this summer...I cringe when I look at them..just like I don't eat Wendy's anymore..I used to stop at every Wendy's that I drove by...I craved Wendy's..and KFC...
For those of you taking chemo now..and you may not be as weird as I was/am..but don't eat those favorite foods of yours during chemo..save them for "after"...
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Titan... me too. Several nice shirts with the BC subject matter that I now wonder what possessed me to buy them. Truthfully, before the reality of what I was dealing with set in, I think I launched into "survivor" mode and bought the stuff. Sort of a proof-before-the-fact state of mind, I guess.
Related subject: my BC boob seems to be more sore of late, some of the tenderness a bit too localized for peace-of-mind. I have an MSK appt., with mammo, in 10 days. I go bra-less quite often, since I don't work. I'm almost one year post op.
Question: anyone notice more tenderness if you go bra-less awhile? I'm not talking the obvious post-surgical stuff. In my case it seems like I'm getting more tender. But, then again, I'm also getting more active; things may be jiggling around more frequently Thoughts?
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I have read on some of the posts on BCO that if you had implants put in that we should never go without a bra for any length of time as there isn't much holding it up except skin and maybe some Alloderm unless you had a lat or some other type of reconstruciton. Even though you build some scar tissue underneath it could cause problems going without. You might want to check out the thread Bras or Post Exchange Bras.
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HHFHeidi:
I have the same thing going on but my next mammo and US aren't until the 28th of Sept. I had a very large lumpectomy as my 1.2 cm tumor was 5 cms. beneath the nipple - almost to the chest wall. I had a large batwing incision that, if stretched out, would measure about 7 inches long. I then had to have a re-excision of the whole thing for 2 clean margins. This was in April 09. I also developed cellulitis in my breast after my first A/C - that was fun too. I have never been without some discomfort in this breast, but it seems lately that it is more tender than ususal and has me a little concerned. My last mammo was clear, but my US showed what appeared to be a small cyst or seroma on or near the internal scar line. Fortunately, MRI one week later showed it to me a small seroma, but where I am the most tender isn't even where the seroma was! It's just so tender all below the incision scar. They did nothing about the seroma as they said it would reabsorb. I am just hoping and praying this is all it is. I will keep you in my thoughts and wish a good outcome for you as well. Lucky you that you won't have to wait as long as I have to. Keep us posted.
Linda
edited to add: I too go braless very often and wear thos Lycra like camis that kind of hold you in as my two breasts are two totally different sizes, so there is no bra other than a sports bra that I can wear. Of course the cami's are ALWAYS under a blouse or loose top.
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