Starting Chemotherapy March 2018
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I am jealous of everyone who's done with chemo! I just finished my fourth of six yesterday. Let the carnival of crap begin!
Bec-ky - They said there was really nothing for me to change to from taxotere, but the NP I saw today (my usual was on vacation) said she had personally never seen anyone not grow their hair back and estimates in the oncology world for it were closer to 2% and usually in older ladies. She also said that most women lose their hair completely right away while I'm holding on to quite a bit of hair, even the body hair which I'm obviously not cold capping (cold cupping? ha!). Anyway, I guess I roll the dice on this. Also, I was on AIs for a couple months and my MO gave me zoladex to suppress my ovaries.
Quiltingnut - your daughter should definitely go get a breast MRI. I had five tumors, the biggest was 3.3cm, and nothing showed up on my mammo due to dense breast tissue.
My bloodwork yesterday was largely unchanged from my previous infusions. RBC count is down from 3.1 to 2.96 and hgb is hanging in there at 10.0 (down from 10.1). I slept through infusions yesterday, went to bed when I got home, and just got up this morning. I feel much better. I guess I'll go to work.
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congratulations QuiltingNut! Have your daughter have thatchecked out. I had weird tingles last summer and fall where my tumor was and regret not scheduling the mammo a few months earlier. I have my 4thchemo of 6 next Wednesday. Platelets delays. Wishing all of you well
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Hi, tough ladies, Hope you are doing well. Have not posted much lately due to numb fingers, but I am checking to see how everyone is doing. I am also done with my last round of chemo. Had 3 TC then switched to Abraxane for the last round because the reaction to TC.
How is everyone dealing with Neuropathy?
Abraxane seems made it much worse than TC during which neuropathy will go away in 2 weeks or so. Sauna also made it worse, so be careful with Sauna for anyone has neuropathy.
Weekend is almost here. Talk soon
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Hi Ladies, Happy Friday!
Congratulations to all of you ladies who are done or almost done with chemo, I want to be like you!
I made it through this long week that included a 2-day work event and gala that I had to dress up for. I loved my dress and shoes and just had to wear my hair in a ponytail so my thin spots were hidden. It was kind of fun, but I'm tired.
I have so very little endurance now, even on my good days. I'm 5 days away from TCHP 5/6 and I'm wondering how my labs will look next week and if my onco will decide to add C back to the TH he cut me back to last round or not. The big D has been much better this round without the CP, but I'm still fighting the exhaustion and dehydration. Last week I went for IV hydration and the nurse that checked my BP after I got my liter told me I was still dehydrated and to be careful!
I have noticed after this round that there have been a few random days where my heart rate will suddenly spike over 150 for no apparent reason. One time it went all the way up to 188 and I was literally just walking leisurely around the house. Anyone else experiencing that? I have another Echo scheduled for mid-July, but I'm a little worried.
My husband and I are celebrating 13 years of marriage this weekend with a little fishing trip getaway! I'm trying to stay really focused on enjoying that and being in the moment. Thursday will come soon enough. Hope everyone is feeling well enough to get out and enjoy the nice weather this weekend.
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Hi Sidalee, I have my 4th TCP next week and hope my platelets don’t delay it again. MO will cut back the T if my numbers look funky. I have an heart scan coming in a couple of weeks. My heart rate and BP has been all over the place. But happy to be halfway there
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Hi everyone!
Had my last chemo yesterday. But it was not drama free. When my MO asked me about side effects. I told her my right eye was twitching on and off for about a week and that my right lip twitched 2x in the last 3 days for a few seconds. She immediately held my chemo and sent me for a CT scan of my brain. Scan came back clear and I at started chemo 2.5 hours later then scheduled. She lowered my Taxotere dose by 20% for fear of toxicity and felt comfortable with it since it was my last infusion.
I’m glad to be done. Now I have a break and I go back to Talk to the MO about starting tamoxifen next month and I await my exchange surgery in 6 weeks. I’m very nervous for my exchange and hope all goes well.
To everyone who is done...cheers! And to those of you still going on with chemo, hang in there! Hope everyone has a great weekend
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May07 - Hooray for the last chemo and good scan results! My goodness. I am impressed by the level of caution your MO is taking even though it caused anxiety. It is better to be safe than sorry! I practically have to beg for any scans or tests. Others on here have had the eye twitch. It must be a side effect from peripheral nerve damage of Taxane based chemos. My left eye started twitching about week 7-8 and has now stopped since my last chemo two weeks ago, but it was pretty consistently annoying for weeks.
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thanks Becca, I think my MO was concerned because I told her that a couple of days ago my right lip twitched 2x for a few seconds and it was on same side as eye twitch so she didnt want to take any chances. I didn't want the scan at all, but she made me do it. She lowered my Taxotere dose to avoid any cranial nerve palsy...and to that I happy agreed
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i had round 3 of 4 TC chemo today and my MO says I'm done. I have ended up febrile neutropenic after my first 2 rounds, with a fever and very sick. My MO was even hesitant about round 3 today but knew I wanted to move forward with it so agreed with a significantly reduced dose and with myagreement that his was my last round. I also have some neuropathy that concerns him. He says I have another 50 years of life in me and wants me normal. Little doesn't he know that will never happen, haha
This is bitter sweet for me since I feel I failed chemo but it was getting so risky. I'm scared to stop early, but my MO was concerned that the risk of death from febrile neutropenia is real and my risks outweigh the benefits. I even had blood transfusion on the table after my first round of chemo I was so sick.
In three weeks I start hormone therapy and Zomata as part of a newly studied Austrian treatment called ABCSG12.
Keeping my fingers crossed for everyone in chemo and already across he finish line! We got this!
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Congrats to all of you who have finished chemo :-). That must feel amazing!! I have 7 days until my next treatment and 21 until my last. I have completed two Taxols now and I have to say they are kicking the crap out of me. I did ok on AC but, am experiencing crazy bone pain and muscle/nerve pain. I am also exhausted. This can't finish soon enough. The thought that I have to feel like this two more times is killing me. I have been on the couch all week... And, my eyelashes have now started to fall out. I am really not sure how to handle all of it some days.
For those of you who just finished, please keep posting how you are doing and what is happening, like hair regrowth :-).
Happy Friday!
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So the only difference between this last cycle and all the other cycles is that it's the last one! I feel a little more unmotivated to do stuff even though I'm so excited it's the last one, and all these aches and pains are in final stages! I spend too much time reading stuff online and I start freaking myself out about side effects and what's next...and what if... And what not... And oh I could go on!
I'm so worried life will never be the same. Will I ever be carefree again? And if so.... Will it be better? Am I going to gain weight all my life now with either tamoxifen or whether I have ovary out and take an AI? Am I going to be depressed? Will I have bone pain forever? Did Chemo wreck my bones? Will my sex life ever be the same? Will I ever not think of BC?
Shall I go on?
I'm so glad this is over but I'm worried about how anxious I'll be!
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Bec-Ky - I feel the same way! Except I'm not done with chemo yet. But every day it seems like cancer is all I think about, from when I wake up in the morning until I go to bed at night, and even during the night when I'm getting up to pee from the chemo. The side effects are getting really bad and I don't want to do this anymore. And this isn't even the end of it! I want so much for my life to go back to how it was before I was dx'd, worrying about things like where to go to buy new shirts and what color to paint the kitchen, but I just don't see it happening with this mess hanging over me. I just don't want to think about it anymore but I can't stop.
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Hapa - yeah and when I painted my bathroom last cycle.. Trying to be "normal" all I got was a FEVER....In other words- A reminder that.... oh, I'm Going thru chemo .. DON'T EVER FORGET!!
Ugh
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Hello,
I've not posted in a bit, but thought it a good time to share some information. I completed Taxol #12, my last dose, on Thursday. Yay! I will continue with Herceptin every 3 weeks for a year, but am hoping the worst is over since Taxol is the official chemo drug that is done.
Neuropathy started in my feet at about 5 weeks. I got on it immediately and this combination of things helped tremendously: L-Glutamine powder, L-Carnitine capsules, Alpha Lipoic capsules. I have been taking these 3 supplements twice a day and will continue for 4 weeks post end of chemo. I also increased my acupuncture to weekly, added reflexology (foot massage), and soaking my feet in epsom salt to pull out some of the toxins. The tingling and numbness is still present, but is about 70% better than it was before I started doing all of this treatment, and it has not progressed to worse.
I still have lashes and brows, but know they might go at any point. I have lost most of my hair, probably 95%, but chose not to shave and enjoy having little wisps sticking out under my cap. I know they might still all fall out too, but I hope it grows instead.
My body gets a little break before radiation starts in a few weeks. I'm hoping to get some energy back and start increasing my activity level. My endurance has tanked and I have to build it back one step at a time.
I also posted this info in the "Weekly Taxol" group.
Bec-Ky, I wonder and worry about all the same things that you posted. I asked a friend, who is now many years past her cancer treatment, how she deals with it. She told me that cancer is too boring to obsess over so she doesn't really think about it until she needs CT scans. I'm nowhere near that emotional space right now, but I sure hope to get there.
Wishing you all a pain-free, peaceful day.
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I've just returned from my Houston trip to MDA and am feeling positive about the test results I had while there. The scans show the main tumor in the breast has completely gone away and the auxilia lymph node has returned to normal. There are two other nodes under my arm that are slightly enlarged still, so continue on with my TCHP I must. Only two more..I can do this, I can do this.
I met with my surgeon after the scans showing “excellent response to treatment" and she said I had three options: 1) I am a candidate for a trial that would mean no breast surgery since the tumor is gone. They would do a core biopsy to remove clip and tissue around the clip. 2) lumpectomy 3) mastectomy. Since she says she has to take out the effected nodes, and I will be going under the knife no matter what, I chose lumpectomy. I also think I need the peace of mind knowing it's gone. I hope I made the right decision. Surgery will be early August.
Becky-I know the feeling of wondering if life will ever be back to normal and when I won't spend every other second of the day thinking about BC. My friends all reassure me that it will get better. The MO last week assured me that I will quit thinking about it by this time next year (which I liked hearing from him) so hopefully it will get better.
I'm so happy for those that are done and so ready for June 28 when I will be done. I have a friend who has her first of four treatments of TC tomorrow and I told her that if she were me she'd already be finished (I've had four) and look how quickly it's gone. But I know the concern and dread she has tonight.
Have a great week everyone, and may your SE's be minimal.
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Downdoggie--I'll catch up with you over on Weekly Taxol.
Bec-Ky--I really feel like the more you can fill your life with other things, the more quickly this will leave your brain space. Two years ago with the DCIS, I was planning a wedding AT MY HOUSE at the same time. It was a wacky, wonderful rollercoaster of a spring, but I couldn't obsess either about my BC *or* about the state of my gardens too much, which in a weird way worked out pretty well. Time will help but so will other things that demand your attention.
Get a puppy. ;-)
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The neulasta shots are really starting to get to me. I was a little achy the first round with no Claritin, not achy the second with the Clairitin. Third round I forgot to take a Clairitin one day and I paid for it. This round I've been taking them reliably but I'm still pretty sore, and all over not just bone aches. Hopefully it will subside soon, as I am now five days out from chemo and four days out from the shot.
I'm super jealous of all the people who are done with chemo! Congrats!
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Hello to all you wonderful warriors! I have had my last chemo last Wednesday but these last two have been extremely worse. I’m looking forward to feeling better soon. We are planning a fishing trip on the 18th. I figure I should feel much better by then. We really need to get away from this for awhile if it’s possible to do that. Lol. All you ladies amaze me and just want to thank you all for your support. Keep your faith as chemo will come to an end soon
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Hey girls, hope everyone is doing well. I love reading all of the announcements that so many of you are DONE! As others said, please keep us in the loop on how you feel as you move away from the chemo portion of this journey. It gives the rest of us something to look forward to and helps to know what to expect next.
My husband and I had an absolutely wonderful anniversary weekend! We had a cute little cabin at a very nice little fish camp, a wonderful guide that kept the boat in the shade as much as possible and baited my hook and we caught a big variety of fish. It was relaxing and fun and for the most part I felt pretty darn good.
I will take a moment to whine about our sex life though. We have only made a couple of attempts, but this was my anniversary weekend and I wanted to have sex with my husband darn it. Why does it have to be so painful? I read that estrogen therapy in cream or pill form would help, but of course I most-likely can't have that because I'm ER+. So, is this my life now? My poor husband is so patient and understanding, but this isn't fair
aruss, I'm right there with you...#5 this Thursday and last round on 6/28. I am so ready to be done.
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Sidalee--I was actually prescribed an estrogen vaginal suppository just before my dx. My doctor said it's not only about <ahem> lubrication, but also about keeping the internal tissue softer/younger. When I went back to her she said it probably didn't make any difference BC-wise but understood why I'd stopped it. She also talked to me a bit about lubricants vs. lotions. I really have no experience with either but you might look into lotions, which I guess would be just like hand cream/body lotion in that you apply it regularly rather than specifically for <ahem> the dirty deed.
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Thanks Ingerp, I guess I will mention it at my appointment this week and see what my Onco says. I kind of wonder if I should just wait for chemo to be over before I bring it up. Of course, that basically means at least another 6-week dry spell...literally.
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<LOL, Sidalee>
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Sid - your last post made me lol. I'm about to throw in the towel on sex. Tried it a couple weeks ago and while not as bad as the first time I tried it still hurt. I think I'm going to pencil some sex into my calendar for right before my next infusion. Or maybe I should make an experimental matrix and report back. I do love experiments. Maybe a 3x3? Pain/position/time from last infusion? Now I just need to source some grant money...
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Ladies, loving all the posts and insights! Again, congrats to the growing chemo-grad group - and for those getting closer, think really positive thoughts! Hooray for those who have gotten away, even for a few days - I know from my end that a one or two night getaway has helped me get out of the 24-7-BC mode. But it is true, it's hard not to start to obsess about the "next step," or "when does it get normal again." For getaways coming up, please enjoy and take a moment to hold your face up to the sun!!
So had my enlarged node out today - only one removed, all others which were normal-looking on CT and US also apparently looked and felt normal during the surgery (semi-whew!). Surgeon said deposits in the affected node were extremely small, and exterior of the node looked good. She also reminded me that ER/PR positive BC can be a little more chemo-resistant (why all 3 treatments are in my plan), and since I only had the sentinel done at the time of mastectomy and it was positive, it always was likely there were more nodes impacted, the chemo may have improved the nodes, and now the radiation is the next step before hormone therapy.
Another hair (and nail!) update - hair continues to come in (very slowly, but the early stubble is now edging up like little plant sprouts, mostly 1/8 to over 1/4 inch, with the early white soft hairs now well over half an inch and wispy). When I stand back from the light in the bathroom I can see shadow on my head (and considering how much gray/white I have in comparison to dark hairs that's a little bit encouraging!). Interestingly, my nails have just started to grow back faster - more to their normal pace - and so I am hoping that means hair growth starts to speed up as well.
Stay positive, everyone! This is not easy, it seems to bring more challenges - and for many of us - more treatment choices, regularly. But we are all facing the challenges, and the support here from all of you - and the honesty - is so amazing and refreshing. Think about the hardest thing you've done - this is all right up there. Yet we are here - doing it. It is so nice to have you all to share and talk, celebrate and complain, and just "be," with a group of people who gets what you are going through and thinking. I really am grateful to have you all here!
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Downdoggie - that's my favorite. Cancer is too boring to obsess over.... 😂 I'll go off of that one!
Ingerp - yep.. We did get a puppy... His name is Mack... (big Mac) hee hee 🤪😂🤪
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Hooray Bec-Ky!! Mine had been named Colin by the rescue group, then I thought I'd try Luca, but when I picked him up that didn't seem quite right either. When he yawns his ears pop up, just like this toy Max dog my sister gave me years ago (from the Grinch), so "Max" it is. :-)
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I am joining the ranks of the "finished with chemo" Yeah!!! My next infusion was scheduled for tomorrow, and I was trying to psych myself up for this round, and dreading all the usual side effects. My MO called me this morning. Apparently, my insurance only ever approved me for 4 cycles (standard of care), but due to high risk on mammaprint and intermediate on oncotype, she wanted to do 6 weeks. With the recent TailorRx study, it does appear there is less benefit to chemo in women with intermediate risk, if they are over 50 and HER2 negative. I will turn 48 this summer. I had 1 HER2+ tumor (2 mm), and 1 that was negative (6 mm). I'm pretty sure I can get insurance to cover the extra 2 cycles, but if the benefit isn't that clear for 4 vs 6 cycles, I will definitely be glad to be done. It is odd. I was really excited to ring the bell and be done, but as it turned out, I finished 3 weeks ago. I'm still going to ring that damn bell. I still have the herceptin for a year, and I will move right into radiation, so joining you Beck-y and Steph! Debating on pulling my port early, vs waiting til I am almost done with herceptin.
My fingertips are still numb to sharp and somewhat to temperature, I hope that will get better. I have just been doing fish oil and B6, as my MO didn't want me doing anything else on chemo. I guess I can try some other things now. I am curious if I will get the irregular heart beat this time since I am just getting herceptin and not anything else. I am excited to start feeling stronger instead of progressively weaker and achy.
Aruss - congrats on the excellent scans! It is nice to know the treatment is working! Hapa - hang in there with the neulasta - I am amazed that claritin every day made such a difference, and when that failed - soaking in the tub. Sidalee - I totally get what you are saying! My MO said absolutely no estrogen cream, but it seems the absorption on that would be so little. Look for a personal moisturizer - I would recommend nutraplus, or something similar. I don't think it is just the lack of estrogen. Our mucous membranes are rapid cell turnover, which is what chemo preferentially destroys. Think the lining of your nose, mouth, GI tract, and....vagina. I feel bad for my husband. He has been very patient, although he said he wouldn't turn down a hand job...not sure if the neuropathy would make that a little interesting...
Take care ladies! I am looking forward to being "bored with cancer".
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Good news, Persnickety! I have #4 of 6 tomorrow, Herceptin until next March. Already looking forward to ringing that bell. Very interested in the discussion of our poor dried up lady parts. It has been a challenge, will see whereI can find nutraplus....
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A quick note for any ER+ ladies going on Tamoxifen after chemo. A small percentage (10%) of women are unable to metabolize Tamoxifen. In the body it is converted to Endoxifen by enzymes particularly one called CYP2D6. Some women cannot convert it well. Endoxifen is actually what works by binding to estrogen receptors. It takes about a month of Tamoxifen usage to reach optimal levels. There is a simple blood test to see if it is working at low, intermediate or optimum levels. I think the last two are indicative of benefit. After 3 months, MO is going to run the blood test to check, because there is no reason to take it, if it is not helping. I mentioned this at the appointment after reading several studies, so, I do not know if this is standard procedure with other oncology practices. It may be worth a mention.
Incidentally, they are in Phase II and III trials to produce Endoxifen, which may work better in the body. However, there are multiple hurdles, and it is not yet available.
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Hi everyone! I'm so happy for all of us who are finishing up chemo! I had my last infusion on the 29th, and feel like all of these lingering SEs are so much more tolerable since I won't have to do this anymore! To all of you who still have a few more, hang in there! Not too much longer :-)
Bec-Ky - I so know what you mean about the fears and anxiety. When I first found this forum, I was reading everything and saw so many stories of problems with surgery, recurrence and other things that had me "what if-ing" so much that I was worrying more about stuff that may never happen, than what I'm going through right now. I had to force myself to back off the forums a lot and stick to just reading a few topics. I think about having BC almost every minute of every day, including when I wake up to go to the bathroom in the middle of the night. Everything I do revolves around it. I so look forward when I can go for long periods of time without thinking about it. I don't know if I'll ever get to the point where I think it's boring, but I sure hope I do!
mLghtn, I live in LA County, but right on the border of OC - I actually work in Newport Beach. My surgeon is in Los Alamitos, and I'll be having my surgery at Long Beach Memorial. Are you nearby?
Since my surgery won't be until mid-July, hubby suggested that we go camping for a few days, so I'm really looking forward to that. We haven't committed to the trip, but this weekend I'm going to pin him down to decide if we go father's day or the following weekend. A few days ago, I told my hubby that we need to set a goal for 2 years from now that we either hike Mt. Whitney or Half Dome to help me (actually both of us) get back into shape after this. I think he thought I was joking :-)
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