Chemo Starting September 2018
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Brink - I didn't have any genomic testing either, but that's because it was obvious I needed chemo at stage 3 so I think wanderweg is probably right.
Fairchild - I'm sorry you're contending with feeling so awful while starting back at work! I certainly empathise. I wonder, if like many of these things, the effects are cumulative, though I would have hoped they'd get easier for you once the chemo was dropped. Hope your onc has good answers when you see him.
Being - wondering how your surgery went and hope you are making a fast recovery.
Thanks everyone for the encouragement on Japan! Brink - good point about the face masks there! wanderweg, I'm not sure if it's a good thing that they don't know -- it just never came up! I interviewed in October just before AC#2, and the only communications since then were the job offer and subsequent negotiations, all by email. I think I will have to tell them something if I end up doing the clinical trial I've been looking at as I'll have to travel for it and there are appointments every 2 weeks for the first 3 months.
Lots of love to you all xx
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Thanks wanderweg and beeline! I’ll talk to my MO to confirm if that’s the case. I’m all for doing whatever test necessary to better understand the beast I’m fighting against, but if it doesn’t help then probably not.
Surprisingly since yesterday I haven’t had a hot flash. I’m wondering if this may be the end of my chemopause. A friend who had TC and Tamoxifen had chemopause at 48 for 2 years before the hot flashes stopped.
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Hi all, thank you for your wishes and prayers. My surgery went well and I am back home. But life is totally different. For everything I have to be dependent. Hopefully this phase will pass soon. Having issues with bowel movements. Started colace, hoping it will help.
Beeline, that sounds great to visit Japan if you feel like it. Could be a good break and nice change during the treatment.
Fairchild, sorry for the SEs. Hopefully those will ease up with time. Hang in there.
Wanderweg, good to know that your hair have darkened up. Mine are also darkening, but have fair share of grey too.
Brink, praying that your counts will come back to normal soon. After surgery my blood work also had low counts, but thankfully they were back up in time for discharge.
Peace and strength to all.
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BeingPositive - Glad to hear your surgery went well! Did you get immediate reconstruction? I drank smoothies every morning and that helped my bowel movements. Plus drinking a lot of water. Definitely after the 1st one it gets easier.
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Brink, I just want to add that my onc didn't do an oncotype either. There was a specific reason: I was HER2+, and knowing that, he said he already knew my oncotype would put me at high risk for a recurrence of cancer, which I guess is the point of the oncotype. That is, to determine whether you need chemo to reduce the odds of recurrence. I have no idea why they would consider running it after chemotherapy....good to talk to your doc.
Being, so glad you're back among us! For what it's worth, I only felt dependent after my BMX for about a week. Afterwards, with friends bringing food, I was ok. But of course it depends on how the surgery went.
Thanks, y'all, for telling me hair darkens up. I was beginning to be afraid that I would have permanently white hair!
SEs are still there....I'm hanging in. If they get worse, will call my doc.
Take care, everybody!
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Being - Glad you are back home and the surgery went well. That total dependence thing doesn't last long but it sure is frustrating. I remember being just astounded at what I could not do for myself. I hope you heal up quickly and get the go ahead to start range of motion exercises.
Fairchild - I have a friend who had chemo four years ago. She said her hair came in white, then turned to a mix of white and gray, then to all gray, then to her normal brown. So it seems like just about anything can happen! I actually had a fair amount of gray pre-chemo, but don't see much of it back yet.
I went to an event on Sunday and went topless! No one in the room commented (not that they would), but it just didn't feel like an issue. I'm not quite ready to do that at work, but soon.
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hi all-
I definitely needed colace after my bmx-those pain pills really did a number in my digestive system! I felt much more capable after a few days. Just find a decent rhythm with when you take your pain pills.
Was diagnosed w shingles at my infusion last week. What a strange virus. Explains some of the muscular chest pain I had the week before. I’m fortunate that my rash is very very mild , but it really is the icing on the cake of what was an uneventful 19 weeks. Last chemo on Wednesday. I’m not generally a weepy person so I’m afraid I may cry when I ring the bell.
It’s unbelievably frigid in the NE-making my daydreams for a sand and sun in February feel much too far away! Saw this meme and it sums up exactly how I feel right now, but in a way that made me laugh out loud. Hope you all have s great week!
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Hey everyone...wanted to say hi. I've been keeping up with posts. Being Positive - I'm very glad the surgery went well and I hope you feel better and more independent each day. Beeline - I keep forgetting you're already in that neck of the woods and really hope you can do the trip to Japan. KK - I hope you POUND that bell on Wednesday! And thanks for the laugh with the cat photo. My hairdresser (oh the irony) actually has two of these creatures.
I had a couple of weeks of feeling really good and then have felt "off" the past couple of days. Work stress has crept in and I'm tired. My entire body is achy, but it could be the fact that I've been to a few spin classes for the first time in I have no idea (at least 5-6 years) or the letrozole or both. It's the feeling mentally off I don't like, but my MO said it would be abnormal if I didn't feel this way. I have my first plane trip since August tomorrow - to warm(er) Texas for a team meeting. I hope it helps me get back into things. I put a lot of pressure on myself and I have to keep reminding myself that not everything was going to be perfect while I went through treatment.
Stay warm to everyone in the US doing through this cold snap!
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Being - so glad to hear you are on the mend!
KK - sorry to hear you got shingles! My brother had them in his early twenties and I remember it being horribly painful. Hope it is not so bad for you and so thrilled that you are nearly at the end and have a bell to ring!
Tiger - Good luck on your work trip! I know just want you mean about putting a lot of pressure on yourself. I can't seem to turn off that part of my personality and give myself a break despite being in active treatment.
Piksie - thinking about you. Hope you are looking after yourself and getting in lots of 4am workouts.
So I just came from my pre-chemo onc appt for Taxol #7 where they decided I should skip this week and not make it up at the end to let my nerves heal. I was so caught off guard I cried in the office for the first time since I got my post-surgery path results in August. I haven't done any research on the effect of having fewer treatments or skipping them because I honestly didn't expect it to even be a consideration at this point. I feel like maybe I should have demanded it anyway -- I think they would have given it to me if I had. But I don't know what the right call is. What do I know about peripheral neuropathy? It isn't helped by the fact that I didn't see my regular onc -- who my husband and I both agreed would have pushed on. I'm just afraid I didn't do the right thing. The neuropathy doesn't seem that bad to me, at least not compared to the recurrence rates for stage 3C. I am still quite upset, but at least I was able to joke to my husband as we left that I wonder how many people cry when they are told they don't have to have to have chemo!
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beeline - I’m surprised too that the new onc didn’t want to give you Taxol #7. Have you been getting markedly worse during the last 2 infusions? My neuropathy was pretty stable until #9, after which it was downhill from there.
KK2018 - I love that picture! I even thought about using that as my profile pic.
Tigerlily318- Going some place warm sounds good. My entire driveway was frozen solid on Sunday. I just stayed home the entire weekend.
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Thank you all for your kind words. I agree, thank goodness for colace. Will continue using it for few days. Other problem I am facing is that my feet are terribly swollen. I feel all veins from my knees to feet feel stretched. Anyone faced it? What can be done? Asked PS, he said to elevate feet. Trying that every few hours. Walking hurts my lower back, so not able to walk much. On brighter side, 2 of the drains are coming out tomorrow.
Wanderweg, bravo for going topless. I go topless only to hospital/doc visit. Didn't gather courage yet to go like that anywhere else..
KK, sorry to know about shingles, but good to know that rash is mild. Last chemo sounds wonderful and trip in Feb seems exciting.
Tigerlilly, I hope now you are back to good mood days. We have been going through a lot, so those feelings and tiredness seems reasonable. Hope your Texas trip is fruitful.
Beeline, are they asking to skip a week and still continue the full course which could be lil delayed or they are asking to skip this infusion all together? May be you can talk to them once again for your peace of mind.
Stay warm everyone!
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BeingPositive - The mastectomy bras and vests do help since they have pockets/hooks for the drains. But still the drains were bothersome. I took a very loooong shower when my last drain was out. Can you sleep with your feet elevated by pillows?
KK2018 - Forgot to mention I had shingles more than 10 years ago when I was under a lot of emotional stress (mom passed away from ovarian cancer, sister diagnosed with ovarian cyst). My shingles was rather painful. Glad to hear yours was mild. The good news is if we ever get shingles again it should be even milder.
My 1st AC is finally scheduled for Feb 4. Kind of wanted to get started earlier so I can have this all over sooner, but oh well. I already got Claritin at the ready...
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KK - That's hysterical. I feel like that much of the time. But that sucks that you got shingles. Both my brother and BIL got shingles several years ago in their late 40's and I went to my PCP and insisted on a shingles vaccine even though I wasn't old enough. I'll have to get the booster when I hit 60.
Tigerlily - I hope the trip to TX goes well. It'll be nice to be somewhere warmer. I do think it would be unusual to just feel normal after all we've been through.
beeline - I hate that for you. I can't imagine the MO would recommend not doing the chemo if they were worried about what it would do to your recurrence risks.
Brink - I hope the AC goes well. I know you'll be glad to have it behind you.
I have a good friend who just had a stereotactic biopsy because of suspicious calcifications and although the sample they got was benign, they didn't manage to actually get any calcifications in it so they want her to do another biopsy in two months. I'm livid on her behalf. And I don't even understand how that happened. They took sample after sample after sample with me until they were satisfied they had all they needed. Hurt like hell, but at least I got a clear answer.
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Wanderweg - I hope your friend gets a more experienced/competent person to do the biopsy next time. Honestly I was amazed at the big difference between different people as I had to get many biopsies for the study I'm in. Some are just so much better.
Forgot to mention. I did ask about tumor genomic tests and my MO said usually it's for metastatic BC or for highly hormone positive BC. Since I'm neither it doesn't really make sense for me to get it. But since I've been part of a research study, they did do some sort of tumor genomic test on my samples to see how the tumor genes may change in response to chemo/immunotherapy. If one of the genetic mutations is relevant for treatment they'll let me know.
Sheri - Maybe you can ask about doing some kind of tumor genomic test on your surgery samples so they can identify specific mutations that may be targets in new clinical trials? Just a thought.
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Hi all!
KK I think you have your last Taxol today. I had mine yesterday. Something of an anticlimax, though I’m already appreciating not having to factor in up and down days on my calendar. Weirdly, the last few weeks I’ve had heaps of energy for a few days after infusion. I haven’t been having any other meds with my Taxol, so I think there might be an odd period of adjustment now.
Swollen feet is something I have had intermittently on Taxol, which might also relate to heart function which is still recovering, and it’s really hot summer weather here as well. Elevation and any movement, like ankle flexes and circles, keeping moisturized, is massage an option? Other things like watching your dietary salt content and staying well hydrated to help your kidneys? Very uncomfortable! Hope it soon resolved.
Xxx
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I remember feeling that way when my last 2 chemos were suddenly cancelled. I was so taken off guard it was one of the rare times I couldn’t control public crying. Mine was because a heart ultrasound taken the week before showed changes from the baseline one, and I was experiencing shortness of breath. I was so shocked though with the sudden finish. I felt concerned I didn’t get enough chemo, I had no closure with the chemo ward nurses...it was just a weird feeling. I’m still worried and wish I was able to complete it
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Thanks Brink and Sue. The elevation helped to reduce the swelling. Yeah, I am doing those feet exercises too. But seems it will take some time for feet to come back to normal. None of my shoes fit for now. So yesterday went to PS appt in socks and slippers! Glad that 2 breast drains came out. Other 2 from donner belly will be out next week.
Brink, good luck for your AC infusions starting in Feb. Hope those will go fine with minimal SEs.
Sue, congrats on finishing taxol. One step closer to being on the other side. Great to know that your energy levels are high. Wishing that continues throughout treatment as it helps in speedy recovery.
Elizabeth, I understand that it is difficult to accept partial treatment. But I also think doctors must be weighing the options of benefit of treatment vs it's adverse impact. I trust doctors when I am not able to compare things myself. I know it is easier said than done. Wishing that peace of mind for you.
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Thanks everyone for chiming in on my skipped Taxol. Elizabeth - that is just how I felt, so shocked and still worried about what it means to miss a dose as no one has explained it well (or in some cases at all!). To my surprise, the specialist nurse has stepped up and been really great. She has called me twice to follow up how I'm feeling about it and tried to help me get answers. Plus she has been at this for 30 years and is a breast cancer survivor herself. She let me know yesterday that it was the head of the oncology department who made the call on the day which did make me feel a bit better. She has also said that it's very, very common to miss doses or stop early. I suspect there are more in my future given that my neuropathy is not really getting better in this week off, but at least I'm a bit prepared for it now.
The other thing that is making me feel a bit better about it is having finally decided to go for the clinical trial. I will have my first appointment with the new onc on the 11th of Feb, but won't know if I will get the drug until I officially start after rads (currently end of April). After agonising for months, I had a long talk with my husband who really wants me to do it. I am worried about side effects and about the general disruption to my life as I'll have to travel 2 hours for each appointment and there are a LOT in the first few months. I wouldn't do it just for my husband, but since I felt I could go either way I decided to try it and commit to 6 months. Then if it's awful I'll quit. One of the things that swayed me is that the MO leading the trial is one of the best in NZ and apparently a super nice guy, too. And this way I can feel like I've done absolutely everything possible.
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Thank you everyone for your well wishes for my upcoming AC! I saw an email from my daughter's school about someone with strep and my heart almost skipped a beat. Of course I started worrying about what if I get sick after I start AC, etc etc. But at least I'll be getting Neulasta so I shouldn't worry... Did anyone get sick on AC with Neulasta?
Beeline - So nice to hear your nurse following up with you! It's nice to hear more reassurance, albeit a bit late. And happy that you can be in the best hands for the study!
So... my hot flashes have pretty much stopped. My conclusion so far is my ovaries didn't stand a chance against Taxol and I'm in permanent menopause now. Primary reason being this increase of facial hair I've never seen before. The hair is fine and soft, but it's totally down the sides of my face. My project this weekend is to whip out my epilator and have them gone.
On the good news, I found out I'm getting a “famous" PS for my DIEP flap, one who did the first full face transplant in the US. If he could transplant an entire face, a blob of fat should be nothing!
Oh, and when my sisters asked me what I would want, I was like “....Rogaine?”
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Brink I was so paranoid about germs when I was on AC! Hand sanitizer everywhere! But I did have neulasta, didn’t get sick (caught a cold from a small grandchild but very mild), and also didn’t have the bone pain that many talk about. A bit achy, was all.
During that period I did end up in hospital once as I felt really off, and at that time my red blood count was so high they were very concerned until it was explained. Clearly the neulasta worked well for me!
I did have to cut AC short by one dose because of heart damage. What Elizabeth and Beeline said about shortened treatment is true, but the image of trying to live well with a weak heart (having seen the effect on my FIL) was very persuasive. Apparently that damage is recoverable, so that’s a project
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Brink, I was also terrified of infection on AC but had neulasta and was fine. I did get a sinus infection after the first infusion, but I was so sick going into it that I'm sure I would have gotten one anyway. I took my temperature about 4 times a day through the whole treatment because I was so worried!
So my hot flashes have more or less stopped, too, but I was thinking it was because my ovaries are trying to come back to life, that maybe Taxol isn't strong enough to stop the estrogen machine! I hope that's not the case and you are right about it meaning permanent menopause. I also have the downy hairs but my migraines (usually hormone related) have kicked back in recently. It will be interesting to see what happens on AC for you -- if you start getting hotflashes again or if it's really just done. Good luck in any case! And how cool about your famous PS!
I got my microbladed eyebrows done today... I was nervous that maybe I shouldn't do it, but so far I am so glad I did. The young woman who did it did a fantastic job, and I found out while were we talking that she does nipple tattoos and scar reduction tattooing for free for cancer survivors which I thought was really sweet. I may do a consult with her once I pass the one year anniversary of my surgery.
Take care everyone xx
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Hello, I’m from December group, I just want know if anybody here did TCx6.
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beeline well done with your eyebrows! It was a bit terrifying, but I’m loving mine. So glad I got it done- I hope you’re as happy with yours!
What a pain (in every sense)about the migraines!
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The neulasta worked like a charm for me - my blood counts were good each round and I never got sick. But I tried to avoid crowds while I was in chemo.
Anxiouslady - I only had four rounds of TC. I have a vague memory that someone here or in th August group had 6 rounds, but I can’t swear to it.
I’m starting to enjoy Sineading in public. My husband said he wants to go somewhere for a drink tonight just so I can be out without my head covered. This is me yesterday, at 12 weeks PFC:
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Wanderweg, thank you. You look stunning!
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I love the microblading stories. I'm 5.5 weeks PFC and was very happy initially that my eyebrows held at about 50%, but they're still falling out. I just googled it and think I might do it. I probably need to do it before I start Ibrance mid-March. My head is now covered in a millimeter of barely visible, baby fine white fuzz. Maybe I can microblade my head…
Wanderweg, you look lovely. Absolutely worthy of a night out! I hope you have fun.
I think a few of you recently finished Taxol? Congrats! Brink, hoping AC is gentle on you.
Radiation starts Monday. I ring that bell (kinda) on March 4. I'm meeting with RO Monday after radiation to discuss the bone mets plan. I believe we're going to zap two spots when the rest is done. For those of you who have done radiation, isn't it a trip? Final confirmation of all the angles, dots, etc. yesterday. Laying on a table with my arms over my head and at least six people with their faces within 8 inches of my bare boobs. Sharpies, rulers, laser beams all over the room like Matrix, someone saying "120" over and over. The whole thing was surreal.
I see the cardio-oncologist on Thursday to figure out where the heart damage is. Blood says yes, echo says no. That should be interesting. More time at the cancer center…. Yay…
I had my first mini-breakdown Thursday after three attempts to pick up my prescription cream failed. Tip of the iceberg; I cried in my car for 15 minutes, finally shared the complete picture with a girlfriend which was somehow relieving, then decided to go shopping rather than return to work right away. My 13-year old liked all four items of clothing I got for him, so I still consider the day a good one.
We're off to soccer. Hope you all have a wonderful weekend.
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I had 6 rounds of carboplatin and taxetere. You were asking about that, I think?
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And other things...I like this micro-blading stuff, too. I was a very light blond in my youth, and although my hair has darkened, my eyebrows have always been invisible. I have some brows, but you just can't see them, and darkening them every morning is a real pain, especially since I'm not particularly good at it! Does anyone know how long micro-blading lasts?
I also have good news. Last week things got really weird with my HR department. I got a call from my ONC's office to tell me that HR had been questioning their conclusion that I could return to work halftime. The nurse was quite upset-- she said the HR person she talked to questioned the doc's judgment and tried to tell them I would never be fully competent again. How's that for discrimination! Bless the nurse...she argued back, and just when I was thinking I may need to get an attorney, HR caved and approved my leave. Finally. But it's done. I think it's ok for now, until the middle of next month, when I'm scheduled to return full-time. But I'll deal with that then.
Wishing you all fun or fun-ish weekends!
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Fairchild - that's appalling how the HR department is treating you! It reminds me of when I first discovered that HR is not there to help employees but to protect the company's interest. They can be surprisingly blind to the fact that looking after employees IS in the company's best interest! I'm glad your leave has been approved and I hope the full-time return goes smoothly.
For the microblading, apparently it can last 1-3 years depending on the ink that's used and including some touch ups. I have to admit I'm usually embarrassed to do things out of pure vanity, but having eyebrows makes me SO happy. I highly recommend it.
Sheri - glad you got some support during your mini-breakdown and that the retail therapy was successful! You seem to be handling it all so well. I hope you are able to leave yourself space for your feelings (not that I know how I would). Good luck starting rads. The set up appointment sounds wild!
I see the MO tomorrow to find out if I can have my next dose of taxol or if they'll lower it, etc. The neuropathy symptoms have gotten a bit better in terms of the constant tingling/numbness, but I still can't open the bloody bathroom cleaner that I blame for having to miss the last infusion. It's one of those where you have to squeeze and turn and my attempts and squeezing just do nothing at all.
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hi Fairchild, I’m also loving my eyebrows. Makes a huge difference to how I look, given my head fluff is snowy white, so almost invisible. I was told they would last a year, and need touching up. I feel as you do about doing things for vanity, but this feels like doing it for normality. I also go bareheaded almost all the time, so some gesture to social acceptability seems appropriate:-)
Beeline good luck with the neuropathy
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