June 2011 A/C & T Groupies Unite!
Comments
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tldrose - I am having DD Taxol #3 tomorrow and for me, the pain subsides after a few days. Gosh, we all have it so different! I put up with the pain and didn't take tylenol, which I feel would have given me relief. My liver enzymes were elevated at my last treatment, but not too bad. I have not taken a tylenol or had a sip of an adult beverage these past two weeks. Not that I was a big drinker at all, maybe a glass of wine a couple times a week or a beer with pizza. But I won't drink again until the liver enzymes are back to normal. The one thing that has stayed with me is fatigue, not debilitating but certainly noticeable. And as expected, it has gotten a bit more intense with each treatment.
3bells - sending healing thoughts and hope that Abraxane finishes off the job of kicking your cancer's a$$! I was offered neo-adjuvant chemo and turned it down because I couldn't bear the thought of going through chemo and finding that I still had a big tumor load. For me, it just seems more logical to cut out as much of the cancer as possible, then use the chemo to clean up the leftovers. I know...studies...etc. But the interesting statistic is that only 40% are cancer-free after neo. That leaves 60% that are not... why is this better than having surgery and being 100% free of everything that can be seen? I just don't get it! And I'm not looking to debate neo vs adjuvant. But I know for me, the peace of mind knowing that they took out everything they could see was kind of like "a bird in the hand" rather than "two in the bush." The only reason that makes any sense to me is for breast conservation.
Michelle
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The pain subsides. Once you start feeling a little better, it's back in the chair! But yes, the pain subsides. I've been more fatigued after #3 taxol. I thought I was doing OK, so I did stuff. Then I was wiped out for about 3 days. Days 10 11 12. Usually I'm not so fatigued those later days.
Tomorrow is my last infusion. I can't believe it's here! It is exciting but I'm going to keep it contained so I don't overdo it the next 2 weeks. I'm looking forward to how I'm feeling after two weeks. For all these months I've been teased by the 2 days before infusion.
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Congrats, Paula! If nothing else, there should be a huge emotional relief!!!
Michelle
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Thanks so much Michelle and Cider8 - I have hope now that the pain with subside! You are amazing Michelle that you didnt take anything for the pain - I've finally started to get relief with dosing every 3 hours with Ultram and Hyrdocodone. I'm hoping tomorrow will be the turning point for me and that I will start getting better each day until the next round! I really want to be able to continue to do things I enjoy while still getting thru these treatments! I have two teenage children and want to attend their football games, marching band events, etc..
@ Cider 8 - congrats on your last treatment! Let us know how you're feeling as the time goes by after your last treatment! I cannot wait until mine which is Oct21st!
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Southhamptom, I tossed a topic out on the chemo forum for anyone interested in abraxane topic. Haven't checked yet to see if there is interest.
Michelle, I was scheduled for a mastecomy but there was the possibility of inflammatory BC. Skin biopsy was negative, but my surgeon said that still didn't eliminate the possibility. Could be just from radiation 12 years ago, but the doctors met and agreed that they wouldn't want to make a mistake and the chemo is hopefully wiping it out (if there). There isn't a test to be sure. Surgery causes IBC to spread which is why chemo is first.They will be watching the lobular BC closely to make sure it isn't growing. (unfortunately a radioactive MRI is the only test that really pins it down.)
It was a hard decision and there have been times when I wish I had played Russian Roulette and had the surgery first. Too late now because I have to wait at least two months after chemo for surgery to build up enough strength. What I can do now is trust in the Lord and remember that all the days of my life are written in his book already. And remember that to live will be good, but to die means eternity in joy.
Praying for the best for all of you!
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tldrose,
after today I only have 3 out of my 12 taxols left. I am in writhing pain right now it definitely got worse as my treatments progressed. I will be on vicodin for 3 to 5 days.
I still think it is easier than the AC, that was evil stuff
L
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they told me neo adjuvent bc then then can see if the chemo is the right chemo for killing the cancer. but then I am stage 3 so they want to catch any floating cells too. if i went through all this and they had given me an ineffective chemo, which we wouldn't have known bc once the tumor is gone there is no way to see if the T AC is working, i would have been majorly bummed. it sucks anyway you slice it.
i have done 12 taxol and now finished 2 of 4 DD AC. I now have 3 weeks in between bc of SE's. foot hand syndrome is my problem. not heard much talk about it around here. i hate AC. I was depleted my the 12 taxol and the AC suck me dry for over a week.
TS
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Beaglegirl - What kind of pain? I will have my 1st Taxol (of 12) tomorrow and my MO did not advise about any pains. What should I expect? I know that SE are more severe on DD Taxol, but I am not aware of SE on weekly Taxol.
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Hello Ralston,
I just did my second Taxol treatment and after the 1st I can tell you I had a lot of fatigue and my knees hurt and the lower part of my legs. I did not have the nausea caused by the ac which is nice and my 1st Taxol drip lasted forever ---the second one I had yesterday lasted just under 2 hours yipppeeee!! My pain kicked in around day 3 I believe so, I think I have today and possibly tomorrow to get things done. I hope this helps you..... Take care!
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In many cases it's not better to have surgery first. I think we all wanted to do that, though. I was not given the choice because the tumor in my axillary node was too large, and my breast was completely filled with cancer. That would have left the cancer more likely to spread at time of surgery. I know statistics don't mean much, but in times of despair, it gives a glimmer of hope. I didn't mean to offend anyone with that statistic, and would never want to upset anyone.
Cider8!!!! Way to go!
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ralston;
the pain is similar to the nuelasta pain. if you havent had that then the best way to explain it- it is in my long bones the most and its deep but also in my feet and knees. Last night when I was in bad shape it had gone up to my right arm and hand. it's a deep ache. Vicodin helps. I went many weeks when I first started taxol without this level of discomfort . Hope you dont feel any of it.
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I am back from Taxol #3 and feeling not too bad. My labs were good and my liver function was back to the high range of normal, so that was good news. I asked about taking Tylenol or having an occasional cocktail and was told it would not be a problem. My daughter and I watched a movie and gave out candy and popcorn to all the nurses and a few patients. The center is very "tame"...not sure they know what to make of us. The next one is the last one, and we are thinking about doing some sort of 70's theme because we will both have costumes. My son's 40th birthday party is the weekend before and it is a surprise themed costume party. Might as well build on that.
I apologize to anyone that I might have upset with my comments about neo vs adjunct chemo. I do realize that there are some inoperable situations that must be treated with neo. Rose, I certainly wasn't offended by anything you said. I'm sure for most of us, the route we chose was, at a minimum, highly recommended by our MO.
Wishing everyone peaceful days with minimal SE's.
Hugs,
Michelle
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Ok, ladies. I need some honest to goodness opinions here. Don't fear offending me. Just give it to me straight, ok?
You will recall that my oncologist would not write me off from school for a short term leave despite the fact that I have the benefit available to me. I did get a note from my gyn, who is doing my salpingoo-oophorectomy in November. It is a 90 day benefit, which puts me going back to school after Christmas break. Here's where I need your opinions. Do you think that 90 days is an excessive amount of time to recover from chemo, have this laparoscopic surgery, then return to school a few weeks after the surgery? I'm struggling with guilt. How can I stay home when I'm not actually undergoing any medical treatment at the moment?
Honest opinions only, please. Thanks!
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BobbieJo - take the time to recuperate from chemo, have the surgery, and go back after you've had time to actually enjoy the holidays. Excessive time - hell, no!!! Stop the guilt trip, it's a waste of good energy. You have performed chemical warfare upon your body and it needs time to heal and prepare for a surgical assault. And if you happen to have a couple of good weeks in the middle of all that, then by all means enjoy them!!!
Michelle
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Bobbie Jo, I agree with Michelle. Your body and emotions have been through chemical warfare! You deserve a good, long break. You should definitely take it.
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BobbieJo, take the time to heal and gain your strength back before your sugery. You'll find yourself in a better position and with greater strength heading into surgery and returning to work. It will get you half way through the flu and cold season away from the germs as well. XOXOXO
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my onc. says the same thing, so i have been paranoid about everything i eat. I MISS SUBWAY AND HOME TOWN BUFFET!!! I miss salad too!!!
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Had my 1st Taxol on Monday the 12th. All went good and my port actually gave blood return!!! So far so good. Feelin' good.
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Ok, i know this is really icky, but speaking of bumps... between my 3rd & 4th A/C i developed bumps in my lady parts.(vagina) and a couple on my butt. had to see the Male NP. and he prescribed me Diflucan for yeast infection. Doesn't itch or hurt or anything, only know they are there in the shower. done with the meds and they are still there???? ANYONE??? you can send me a personal message if need be. Thanks!!!
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BobbieJo, I agree with Michelle, Stephanie, and Rose. Here's why:
My surgeon and I were recently talking about my lumpectomy and SNB which is tentatively scheduled for 10/19. i was under the impression that I could perhaps have the surgery on Wednesday and return to work the following Monday. The SO looked at me like I was insane - he said he is recommending that I not work for 4-6 weeks after the surgery. I asked him why, it's a simple surgery isn't it? His response was that it is simpler but not necessary simple, and by that time my "body will have been through hell" with the 4 months of chemo, AND I would still have rads afterwards and will need to be well-rested for that final push. He also commented that I didn't strike him as the kind of person who would sit back and take it easy unless I was told I would need to - so he felt he should be the one to tell me.
I was truly surprised at all this, but was also immediately aware of a sense of relief within me. The more I thought about it, the more I realized it would be the right thing to do. So I've been telling my boss and my team that the plan is 6 weeks out. I am TRULY thankful that I have enough sick time in combo with disability so I will continue to have full paychecks (which is absolutely necessary since my BF is unemployed - in fact his unemployment runs out this week -although he does handyman work on the side there are no career prospects in sight).
I know I'm rambling but I'm telling you this because I think it's important to recognize that we are often the last people to see or admit how much of a toll this thing takes on our bodies (not to mention our souls. As we all know, the SEs of chemo last far longer than the actual treatment does. The benefit offered to you exists for a reason and I hope you feel you can say yes without much more guilt.
Sorry for the long post. In other news, today was my last T and last chemo altogether. It doesn't feel real, ya know? I still have at least a week of SEs ahead of me but by the end of next week I should have the worst of it behind me. The onc PA today said we should have a f/u appt in November, after my surgery, just to touch base and to discuss surveillance... she talked a bit about how some people struggle with the transition "from treatment to survivorship" and it got me totally emotional. Then, SHE started crying too. I gave her a big hug when I said goodbye to her today, and thanked her for saving my life. I need to start thinking about what I can do to show my gratitude to all the team members who took care of me.........
But for now, I have got to take a nap! The IV benadryl always makes me so sleepy.
p.s. Julee, not sure what to make of your bumps. That's a head-scratcher!
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Did anyone have really elevated liver enzymes because of the taxol. My 2nd chemo was held to give my liver a rest?
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I had my first dose of Taxol today (11 to go). So far feeling pretty good, was pretty sleepy after coming home and lay down and slept. I wore ice mitts and sleepers on and off, to avoid the tingling sensation and try to keep my nails. It was too cold to keep them for 1 hr. (no fun... almost cruel) I hope it works, because the "numbing" sensation in my upper arm, underarm and chest plus LE (SE's post-surgery) are already driving crazy. I am waiting to see what the next few days are going to bring.
BobbieJO - I use to felt the same guilt, and then I remember that by doing that I was sabotaging my "healing"... I decided to donate 2011 to cancer and do everything to help my body to heal by adding mind and body therapies (meditation, positive affirmations, yoga, etc.), so I don't feel I am home "doing nothing". Embrace this journey with joy and don't feel guilty at all. You deserve it!!!
Julee - Try using flushable moist wipes the first few days after chemo to prevent the discomfort/burning that may accompany urination; these may help soothe irritated tissues. You may also use a squirt bottle with warm water. Trade your stylish, binding underwear for 100% cotton during chemo and change them often. Many women suffer from chaffing and an adult form of diaper rash. Hanes for women makes the best underwear I could find for chemo. Buy one size too big and make sure the leg ribbing is also cotton. It also helps to use diaper rash cream or Vaseline as a moisture barrier at all times. External only. You don't want to contribute to a yeast infection.
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BobbieJo,
Best thing I can add is:
What would you advise your very best friend in the whole world to do? A friend you've known since you were little? A friend who had done the MX thing, the poisonous chemo thing and now the oophrectomy thing? Who was looking at going back into a swamp of yucky bacteria and viruses and fungal yuckies?
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Oops, I forgot to add that I had ultrasound today.
Tumor started at about 7cm and is now 2.07cm by 1.04cm.
This puts the hell of 12 taxol followed by 4 DD AC of which I've only just finished the 2nd into a new picture.
Dear god, if I can come out of surgery with NED (the one lymph node that was bad is now totally normal looking in ultrasound), I will bless the gods of chemotherapy poison and thank my lucky stars. Not bc I want to keep the breast, but bc NED is the big huge goal we're all fighting for!!!!
They pushed up my chemo by a week and didn't tell me why. Just left me a message that I was scheduled a week early. Back to every other week. Whatever. Tumor shrinkage and killing any fu**ing little escaped floaters makes the existential pain of AC worth it. That's how I describe AC SE's to outsiders. There is no pain, no stabbing, no throbbing, no aching pain. It is entirely an existential pain. Can anyone relate?
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Kyroheal - yes, my liver enzymes were elevated two weeks ago before Taxol #2, but just slightly above the top of the range (AST only). It was not enough to delay treatment, and surprisingly, they were fine yesterday when I had Taxol #3. I was careful - no Tylenol and no alcohol, not that I use much of either. I did talk to my PA about it and he wasn't concerned, said I could use Tylenol and I could partake of an occasional cocktail, so I guess all is OK.
Twistedsteel - congrats on the shrinkage! That does make it all seem worthwhile!
Michelle
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Dear Twisted - congrats on the shrinkage - WOO HOO....!
Last AC today. Two weeks of nasty side effects and then off to Taxol.
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Thanks for all of the feedback & encouragement, everyone. I will be talking to the HR dept. tomorrow to finalize me leave. Guilt free, I might add!
Twisted - congrats on the shrinkage! That's positive news we can all celebrate!
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No elevated ezymes for me. Just lots of pain! Sometimes stabbing, out of no where, and other times just relentless aches.
Congrats, Twisted!!! That's such wonderful news!
I am usually mandated to get a flu shot at the hospital I work at. Has anyone discussed getting one while on chemo? I'm a little worried. Even though it is a dead virus, I always feel like I have the flu after getting the shot, but also worried about getting the flu from being immunocompromised.
BobbieJo, Glad you are taking the leave!!!
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Rose: I just talked with my oncology nurse today about the flu shot. She said to definitely get it, but get it on a non-chemo week. I've never been one to get the flu shot because I question it's effectiveness. How do the manufacturers know what strain of flu will go around &, therefore, how to make the vaccine? But, this year I may break down & get one. Still on the fence.
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I think they miss the correct strain from time to time, but they usually get it right. I've not had the flu in over 16 years. I don't want it this year
I am going to ask today. # 6 of 12, ugh
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