Chemo starting October 2017
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Simbobby, how scary! I hope the rest of your treatments are uneventful.
Lisa, sorry you are having such a hard time too.
Is anyone getting another drug like carboplantin or avastin added to taxol (paxitaxol)? I think I am just getting a whopper of taxol since my MO does it the classical way of every 3 weeks. I do worry about the time in between each treatment. I still feel my tumor, although it has shunk, I worry it's still there.
BTW, I do have the crown in my Netflix list too. Have not gotten to it yet
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Just got home from my Taxol #2 DD (every two weeks) I have my next one Jan 2nd and then my last one Jan. 16th... so the END IS NEAR. I also had a mild reaction today with Taxol... it was about an hour into the drip and I got a hot flash sensation in the throat that felt like it was going to close off, but then it moved down my spine and felt like it was putting pressure on my lower back/hip area... there was no nurse in sight and it passed so fast I did not tell them... I would have YELLED if it had continued.. BUT I will tell them when I go for my next dose, just so we can watch for it...it was mildly scary. I can not imagine how you felt SIMBOBBY, just another thing to worry about when you go for treatments...you do NOT need that. Hope it was a one time event and it goes smooth from here.
LisaRX: So sorry about all the SE's, Hugs to YOU!!!
Agatha: I had to change surgeons too, I just did not connect with mine at first visit. My sister was with me and she hated her... but it was scary to ask for a change... my hospital also has a board that reviews requests, but I got mine, and I got the woman I wanted, she is the head of the Breast Surgery dept. and I really loved and connected with her. She said she did not review the prior surgeons notes and just reviewed everything fresh. She explained it all to me( like it should have been done originally) but she explained because of the length of the mass from near armpit over to nipple, with cancer pulling nipple(inversion) that I would need a mastectomy in order to remove all the dead cancer cells completely. I too, do not have any node involvement at this time that they can detect, but surgery may tell more. Just wanted you to know it pays to fight for what we need, even though it is tough at times, so I think you have taken the right step in taking care of yourself. Have a safe trip at Christmas.
Well I am suppose to work tomorrow, if things go with this second dose like last time... the steroids are still pumping the second day and I feel great... hope to get some other chores done before I crash afterwards. I too, will be under the weather with SE's on Christmas Eve and Christmas but I am grateful to be alive and able to attend, even if I am sitting in a chair all night!!! I am sure I will be mildly babied, so I can do this!
Have a good evening everyone.
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Sara, it's a stand-alone show, not a series, called "Edward VIII: The Nazi King." It's produced by BBC.
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Well, #4 Taxol is down the hatches. I had a great oncology nurse today who advocated for me. She asked about numbness in my fingers and toes, and I said yes that they felt like they'd been slammed in a car door. Then I told her all of my woes. She basically marched in the MO's office and demanded he do something for me. His initial response was to skip this week, even though my numbers were fine, and to resume next week with a reduced percentage. I balked at that because that would mean adding another week on to the end, and back she went and told him that I wanted to start the reduced percentage today, and if I still felt crummy next week, we'd skip that week and try to give my body some rest.
So here's hoping a 25% reduction will make a big difference in my quality of life. Crossing my fingers for no more chills or fevers, and that my fingers will not continue to deteriorate.
56 more days of chemo (I hope!).
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LisaRxCinci,
I just had my 4th weekly Taxol too. I pray that reduction of the dose lessens your SEs. Do they give you nausea meds and benidryl prior to your Taxol?
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- hi everyone! Thank you so much for sharing your experiences. I just had my #2 of 12 Taxol on Tuesday. Steroid has pumped me up so much that I could only sleep 3~4 hours for last 2 nights. I have very good appetite and feel hungry all the time. I didn't feel nausea, I was so energetic on second day of Taxol.
Other than these minor SEs, it seems Chemo didn't work on my whole body and my lump. I feel my tumor size never changed after 4 round of AC and 2 weeks of Taxol. Although I know the measurement of my finger is not accurate. Ultrasound said I have a cyst in the middle of my lump, the cyst has fluid, so it's technically difficult to measure. Good news is a Lymph node cortex shrunk from 0.6 cm to 0.36cm.
My surgery has been scheduled in later March. I will finish my last Taxol on 2/27. I haven't decide whether to have BMX or just on my right side. My gene test came back that I don't carry any breast cancer gene (total 26 gene). But I am TNBC, adding the fact that I almost didn't response to chemo. I'd like to think more factors about prophylactic mastectomy. I really appreciate if you have any suggestion to share.
Yesterday I bought a Christmas gift for my 10 year old daughter. Tomorrow school winter vacation will start. She is very excited.
Have a good holiday everyone!
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Hello ABCMom. Although I’m not TN I has a unilateral mastectomy. I’m very please mostly because I’m not worried about margins or remaining tissue. I may have my other breast removed for symmetry in the spring.The surgery wasn’t awful. Just lots of rest. If I would have had a broken leg I would have been out walking within a few days.
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Thanks for the positive vibes, ladies. Today so far, I feel fine. Crossing my fingers for a better experience!
ABC Mom, welcome to the boards. It's disappointing to think that the chemo doesn't seem to be successful in completely eradicating your primary tumor, but primary tumors are easily taken care of with surgery. I don't think one can conclude that it's also not working on other cancer cells that are floating around because it's not like your tumors have been growing through the chemo; at the very least, they've been arrested in their tracks. I'd assume that ALL the cancer cells are similarly arrested in their tracks because you're throwing the big guns at them. And your nodes have shrunk, so that's all good news.
As far as UMX vs BMX, that's the $20,000 question. I go back and forth every day. Some days I think that a lumpectomy with radiation would be the best thing to do, even if that means living with the fear of recurrence, because it's the least traumatic thing for my already traumatized body. Other days, I think that eradicating the fear of getting another primary cancer would be a huge stress reliever, and that I might as well do a BMX while I'm still young and strong and presumably cancer-free (after surgery).
I do have two thoughts that you may not have considered:
1) Even if you get a recurrence of primary cancer, don't assume that that tumor would also be a TN tumor. Every tumor is different. I know many patients who have multiple tumors, and rarely are those tumors the same type and grade. In fact, the lady I sat next to yesterday in the infusion room, Terri, had one TN tumor in her right breast, and an HER+ tumor in her left. So after going through A/C and Taxol, she gets to take Herceptin for 5 years!
2) If you know that your cancer has already spread outside of your breast, it might actually make the most sense to keep your healthy breast intact until after the threat of recurrence has passed. No sense stressing your already-stressed body out more! Instead, work to boost your overall health by eating better, exercising more, reducing your stress, and spending more time doing things that you love. Then, later, when your body has recovered from the stress of beating this cancer, maybe look at doing a prophylactic mastectomy.
Best of luck to you!
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DKK,
Week #1, I got 3 steroid pills, 1 Benadryl, and 1 Pepcid.
Week #2, I got 2 steroid pills, 1 Benadryl and 0 Pepcid (I turned it down cause I'm taking Prilosec).
Week #3, I got 1 steroid pill, 1 Pepcid (didn't fight it again), and 0 Benadryl. (I think the newbie forgot the Benadryl. Ooops!)
Week #4, I got 1 steroid pill, 1 Pepcid and 1 Benadryl.
Week #5, I hope I get 5 golden rings! 1 steroid pill, 1 Benadryl and a Pepcid 24 hour pill!
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Lisa. Five golden rings. Ha!!! Love it!
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ABCMom, I am 45 with a 5 year old daughter and also TN. I decided to get a BMX. I have never had a surgery before and it's scary but I think it's the right choice for me.
My mamammograms have always been fine until this last January. Microcalcifications where found on my right breast. I was told they were probably benign and I was getting mammos on the right every 6 months. Then in September I found the lump on my left that biopsied to be cancer plus there are 2 other probably benign small lump/node. At this point I don't trust mammos with my dense breasts. As they've said I am fine and MRI is spottting other issues. I love and trust my BS, and she thinks bmx is the right choice for me.
I meet with my MO tomorrow. First time I have seen him since this all started. They leave you with his NP on a regular basis.
Have lots of Q's. I have been really worried I am on taxol every 3 weeks and it seems no one does it that way anymore. Worried it's going to allow my cancer to grow. I got good results with AC, just don't want to backtrack. Not sure what the goal of taxol is compared to AC
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Jennifer. If it’s reassuring to you my last three rounds are three weeks apart. Not Taxol, but it’s harsher sister Taxoterte. I understand your fears and wish you good luck with your surgery.
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Last few of days have been pretty rough with bone pain from my 2nd DD Taxol. Last time I attributed it to Neulasta, but I didn't get a Neulasta shot yet this round so it's just plain ole Taxol that's making every big bone in my body ache. I'm hoping to skip Neulasta this time since I have an extra week to recover. I'll know later today when I get the results of this morning's blood draw.
One reason my MO might want me to get the shot is that I'm flying on Sunday. I'm traveling alone and am considering asking for a wheelchair or ride on that motorized cart in the airport. The passages are LONG at my airport and I get out of breath so easily, but I feel a little guilty asking for this service. Maybe I should just do it. Have any of you guys flown since you've been on chemo? Any tips?
Yesterday I had a good appointment with the dermatologist at MSK. My MO wanted him to check out my rash, fingers and feet. My feet are peeling like crazy; he prescribed a cream to help get the shedding over with (6% salicylic acid). I haven't started it yet but I'll let you know how it works if any of you guys are having the same problem. He also wanted to stress how important it was to keep my hands/feet iced during Taxol, including 15 minutes before and after the infusion (I didn't know about the after part.)
Scaligirl - THANK YOU so much for the detailed description of your radiation prep. I still have to finish up chemo and have surgery before I start radiation, but I've been curious/nervous about the process. Your post really helped. I have my first consult with the R.O. on Jan 12 so I assume I'll get a lot of questions answered then.
HikerVA - thanks for sharing your story about switching surgeons, too. I haven't heard yet about my situation -my numb little fingers are still crossed :-)
LisaRx - how are you feeling after the reduced dose? I'm SO glad you had an RN to go fight on your behalf. Taxol side effects are no joke -- not sure why people keep saying it's easier than A/C.
ABCMom - Maybe the chemo is killing the cancer cells and it's the cyst you are still feeling? I have a large, TN tumor, too. It's scary stuff. You still have 10 more Taxol treatments to attack the cancer - I hope it's really effective for you.
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Jennifer - When I asked my MO if I could take 3 weeks between Taxol #2 and #3 so that I could go away, she said it would not reduce the effectiveness. Three weeks between infusions used to be the standard of care before Neulasta allowed them the give it every 2 weeks (reduced WBC recovery time.) She said it was just fine to wait - she prefers the 2 week schedule since it gets chemo over with faster. I hope that makes you feel a little better until you can speak with your own MO :-)
LisaRX - I'm totally singing "The 12 Weeks of Taxol" now!
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#2 of 4 Taxol tomorrow .... not looking forward to it but am looking forward to the weekend. May the force be with all of you.
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Agatha - totally ask for help at the airport. Do NOT feel guilty. You are a cancer patient and this is exactly the kind of situation deserving of assistance. I say that being a proudly independent person. I've had the ability to use handicapped services (inlcluding a parking tag) a few years past due to Lyme disease and I ONLY used them when I felt a strong need (maybe 2% of the time). When you can't go long distances easily, use those motorized vehicles and wheelchairs at the airport!
ABC Mom - I was really excited at first because my doctor felt there was a measureable difference in my tumor size after AC #1, but it has stayed relatively the same size since (large, 4.5cm or more x 6.5cm). He explained on Monday that it very well could be dead cells (or still live ones, or a combination, just won't know until surgery). My surgeon had explained earlier that there would still be hard mass, like a coral shell - like a coral organism that has died, but the remains are still hard and there. I don't know if that's helpful. I can certainly understand the worry of not feeling any change. Do you feel even a slight softness on the outside of your mass that may not have been there before?
I just had Taxol #1. Wow that whole infusion took so much longer than I had expected and planned 3.5 hours). But no allergic reaction! Yay! The benadryl made me woozy, but I never fell asleep (actually, it made my stomach a little queasy. THe nurse said it's because they have to push [most of] the drugs now that there's a shortage on infusion bags. The dex made me feel more normal and given that I arrived experiencing STEROIDITY from the 20mg of dex the MO had me take the night before, it was nice to mellow out a bit! The other pushed med was Pepcid. I don't feel as awfully poisoned and drugged the way I did coming out of AC. My eyes don't feel blearily full of drugs. This is a better feeling so far. I am still paying attention to how you all have been doing... some not so hot even though the first rounds seemed to go well. And the cumulative effect is always in the wings.
Hope you are all doing well. Happy Solstice! We need the sunlight to come back - especially in the northernmost reaches of the Pacific Northwest!
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Good morning, ladies!
I'm on Day #2 post Taxol #4:
Yesterday, I ran a slight (99.4) fever and had a little bit of chills, but I hunkered down in my electric blanket and drank, drank, drank. (Water, not alcohol!) Took just an hour nap, but was able to wake up and stay up the rest of the night. My husband came home from work and we snuggled and watched tv together. I was able to eat a good dinner without taking an anti-nausea pill, too, so all are positive steps forward. I slept very well last night, without the night sweats that have plagued me since I started Taxol, and woke up feeling quasi-normal. Breakfast went down fine. This 25% reduction may be just what I needed to get me through the last 8 weeks of Taxol.
My fingers are still pretty sore, but I'm working them as much as I can to get the blood flowing.
Hoping for a SE-free weekend for all of us. We deserve it!
Agatha, I agree with voilalia. I cannot imagine having to trudge through airport concourses in my current condition. I get winded taking laundry out! Happy travels to you!
54 more days of chemo!
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Hi, everyone.
Thanks for the encouragement Voilalia and LisaRX - I did request a wheelchair for the airport. I'm sure it will be a lot easier this way.
Yesterday I got a surprise call from the surgeon that I'm switching from. The conversation was a little awkward but I feel better that I told her why I wanted to change and she apologized for stressing me out. I'm glad we talked - now I won't feel awkward if I see her around the breast center when I'm there. I still don't have a new surgeon yet - I'd really like to meet with him / her soon.
I lucked out. My counts are high enough that I didn't need to get a Neulasta shot. The Taxol bone pain has really calmed down and I'm happy not to have to deal with Neulasta SE's while I'm away.
My finger tips are REALLY tingly/numb today. They don't hurt but it's a little troubling. I need to research neuropathy a little more. I'm not sure how common it is for it become permanent after treatment or if there is anything I can do to relieve the feeling now.
eighthoutof8 - hope your second Taxol goes well today. We're almost done!
voilalia - hope your first Taxol treats you gently. Are you on the 12-week plan or 4 dose DD plan? Thanks for sharing the coral analogy. It makes me feel better that I can still feel my lump - hopefully it's dead cells.
LisaRxCincinnati - seems like the dose adjustment worked. I hope that your weekend continues to go well. As you said, we've earned it.
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Thank you Joyseeker and Agatha for reassurance. I also got some today from my MO and I feel 60% better. Always that fear in the back of your mind, is this working, what my results will be. Honestly the MO really can't tell you exactly either, as everyone responds different. My meeting with the MO was shorter than I wanted but got some of the major worries answered.
Met with the MO, they actually had me put on a gown and he felt around. First time since my September diagnosis meeting. The MO asks me, how are you doing. I say "ok". He says "your doing awesome". Well that made me feel better. He was referring to the tumor shrinkage on the US after my last AC treatment. He says he expects me to have a full response. That would be wonderful to get a PCR. I know for us TN's it's a big deal!
I got to ask my question about 3 week taxol and he says it's not proven shorter time frames are any better. I know all MO's have their different opinions. I said as long as you don't think it will start growing again in that time frame, MO said no. So just have to trust I am on the right path. I am going to push for another US in late January just for peace of mind. He did mention I will probably need a blood transfusion at some point. Just can't get those red blood cells up.
Agatha- I would have to get a wheelchair to walk a long distance. I get wore out after shopping in a few stores or doing housework. My family forgets this frequently and I am walking feet behind them just trying to catch up.
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Hey friends! Let’s see your Christmas trees! I need some Christmas spirit! 💜
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The 25% Taxol reduction has been a godsend. I'm actually able to function instead of curling up in a ball and shivering for 3 days. My husband and I even joined friends for Music Trivia last night. The only bad thing was that the bar food didn't sit well with me. But I'll take a little indigestion if it allows me to get out of the house!
Sara, I'd send Christmas tree photos, but my tree only has one ornament on it! I just didn't have the energy.
53 more days of chemo!
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Lisa. One ornament is completely ok. ❤️❤️ I understand. I’m so glad the reduction in Taxol has helped.
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Sara, I have to admit I just couldn't get up the energy to decorate at all for Christmas this year. It all seemed too much for me. I'm a complete Christmas nerd and LOVE to get a big tree and do it up. Just not this year. Even the thought of trying to get an 8 foot tree to stay in the stand straight gets me winded. I'm just waiting for the rain to stop to go out and do some last minute Christmas shopping. Why does it have to pour when I have to go out walking to get errands done? I pretty much have botched up Christmas this year.
So glad you're doing better, Lisa. Keep it up!
Jennifer - Good you got at least some of your questions answered and that the doctor said you're doing AWESOME and he expects a full response. I'm sorry that you may need an infusion. This is all so scary.
I have a weird question: do any of you use your fingertips/fingerprint on your phone to unlock it or as a password on some apps? If so, are you having any trouble with it? For the last couple of weeks my phone will not recognize my finger. I even went to the Apple store and the function is working, just not for me. My numb little tips are awfully smooth - like the fingerprint grooves are plumped up so maybe not recognizable? Just thought I'd ask. Maybe now's the time to pull some caper so that they can't trace my prints ;-)
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Christmas tree mainly decorated by 5 year old, so ornamented heavy on the bottom half.
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Jennifer. Well isn’t that joyful? A bottom heavy treat. It means the spirit of Christmas is alive and well at your house
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snowflakes and stuffed toy ornaments this year
my mom loves christmas. she thinks of different color schemes each year.
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Oh how cute!!! I love the Idea of changing the theme each year. Thanks for sharing
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Here’s my tree. I know I’ve posted before but I just love it this year. I love seeing everyone’s!!
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We used to only stick to one color scheme (red green silver) or just white and gold...but then it kind if got out of hand. There was a year we did pastel pink, blue and green ornaments.
that was nice too. a year we did orange and gold. just takes up storage that’s all. : 0 -
Just about to tuck in and took a night shot of our tree to share! It looks so magical all lit up and with a bounty of presents beneath it! Feeling very blessed. May you all have Christ in your heart all day... and all year long! Merry Christmas Sisters! 😍🙏🏻
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