Starting Chemotherapy March 2018
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Steph74 - So glad you know women without side effects. I have read that some adapt and the effects calm down after a bit. One can hope. Congrats on the hair. I have some crazy mutant hair filling in between the frizzies remaining from cold capping. I want my old hair back. Crazy how much I miss it!
I have had some serious shedding that started about a week after beginning Tamoxifen so 14-21 days post chemo. I am pretty sure that is the cause. It is upsetting that I worked so hard during chemo to keep my hair with cold caps only to have it fall out on Tamoxifen. Grrr. I really should try to focus on the positive and be happy that there are treatments available. A work in progress.
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Hi everyone, on what is the interminable wait to see hair start to regrow, last Sunday when my husband and son returned home after 5 days away, both said "wow, your hair is really starting to come in." Staring at it every day, I had not really seen much of a difference. I'm 7 weeks PFC now, and there finally are more darker strands competing with the grays for territory. It's still inconsistent in areas - but even me staring daily in the magnifying mirror can see progress now. I guess I would say be patient - the sites say we should see growth 2-3 weeks out but... And don't count eyebrows and lashes in that timeframe - I am pretty much browless at this point and I had decent brows throughout. I also have less to grow back as I overplucked years ago and my brows were pretty thin to begin with. I am seeing a few eyelashes coming back, babying those and rarely adding mascara, just going with heavier liner instead.
So during rads yesterday, after the first position, all sound goes off and the machine goes dark. A busted cable! There were 4 of us still to go, and they weren't able to reboot so that adds an extra day on at the end. Hopefully the Cable Guy was able to fix it last night. The team was so nice and apologetic, but what could they do? One of my fellow reschedulees was telling me she is almost done with rads but still has months more of chemo to continue - she is doing it simultaneously. Gave me a moment of perspective on my 3 months of TC issues.
Bec-ky and Steph, and any others getting ready for rads - don't forget to moisturize!!
Wishing everyone a great day.
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Good Morning and Happy Monday,
I've come to whine. I am feeling a bit sorry for myself today. My newly intensified SEs are nosebleeds. I have had a few little nosebleeds here and there and there is always a presence of dried blood in my nose since chemo started, but I had a major nosebleed late Saturday night and an even worse one on the way to work this morning. It was so bad I almost just went back home, but I was closer to my office so I ran in and sat in the bathroom forever until it slowed down. That was 2 hours ago and it has restarted a little twice so far.
That leads me to my next worry/whine. I am so, so anemic that I can barely get out and walk right now, let alone exercise. I am getting really scared about the upcoming surgery and my bleeding risk. From what I've read, my hematocrit levels put me in the moderate-severe anemic range and I doubt that has improved. Is anyone else that has surgery coming up next having this concern? It's definitely on my list of questions for my surgical consult on 7/9.
Chemo #6 is this week, so ready to have this part of the process behind me. I'm also going to complain about people telling me this is almost over or the hard part is behind me. Um no, I still have major surgery possibly followed by weeks of radiation, 8 more months of targeted therapy infusions, and YEARS of hormone suppressing drugs. I'm not even half-way and no, I am never going to be "back to normal". Ugh, vent over.
On a positive note, my weekend was pretty awesome. We had the girls' dance pictures done Saturday morning and they turned out just gorgeous, I love them! Then we had a sleepover birthday party for my oldest and it was a lot of work, but totally worth it. These girls keep me going
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Sidalee--I'm so sorry, but good for you for venting here. So much of this stuff sucks, but you *will* get through it and *will* get all of the icky SEs behind you. Hoping you have a Monday of feeling pretty good.
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Sidalee - I feel the same way! I'm also in neoadjuvant chemo and have surgery still to come. I've had low RBC count and hemaglobin but I feel ok so far still. However, I think if you're really feeling piqued they can give you a blood transfusion. How long after your final chemo is your surgery? Mine is six weeks and I'm kind of peeved about the delay, but my original PS went out on leave unexpectedly so they are having to scramble to coordinate with the new PS.
I'm getting tired of my one coworker who can do nothing except ask me about my treatment and when my next chemo is. Look lady, there's really not that much of an hour-to-hour change in my status. If anything big were to change, I'm sure you'd hear about it when the ambulance came to pick me up. Also, my chemo is still scheduled for the same day as it was scheduled for yesterday, same schedule it's been since the beginning. I have no idea why this is so interesting to you. If you have nothing interesting to say, you can just walk by without talking, I'm kind of tired of being reminded of it. Anyway...
My mom asked when my surgery is and now she wants to come and stay with me after surgery. She is about the last person on earth I want around when I'm feeling bad. When I was a kid and would get sick, she'd just yell at me for being sick and then give me a long list of chores do to around the house since I wouldn't be going to school. When my dad was sick with cancer, she yelled at him for dripping fluids on the floor when he'd drain his biliary catheter - the guy was literally dying and she's worried about some fluids on the linoleum! I'm going to be feeling pretty crappy and will probably be pretty snappish, and she is not an empathetic person and is not the type to diffuse a situation, in fact she is quite the opposite; she always escalates an argument. Not to mention, she won't drive anywhere and doesn't really do things so much as she asks other people to do things for her. And you're probably wondering why I just don't tell her not to come. Well I have. Several times now. And every time I talk to her she mentions booking a flight to come out again.
Also, my sister offered to come after my surgery to help out and I thought that would be great because unlike my mom, my sister has enough awareness and self-control to not make things worse for someone who's going through tough times. But, as usual, when it comes time to actually help (as opposed to offering to help), she can't. She has to take her kids to Universal Studios then instead. No worries, I wasn't really counting on her anyway, though the help would have been nice.
Whew ok, I feel better now! Thanks for getting the ball rolling on the whining Sid, I needed to get that out!
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hapa--I've had offers of help but really do better on my own. And just re: the co-worker with all of the questions, this is what I learned from an advice columnist. When someone asks personal questions you don't want to respond to, you can go back with some version of <blank stare> "why do you ask?" Or if it's something you've already told her, "No change--how are you?" Not sure if any of this will help but it might be worth a try. Negative people in your life are not welcome right now!
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Ingerp - I've considered just launching into a huge long detailed list of all my side effects and bowel troubles, etc when she asks. Maybe then she'll quit asking for updates, lol!
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Love that attitude, hapa!!
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Sidalee - Complain all you want. We are empathetic because we know how suck-y this is. I had a huge pity party for myself this past weekend. Then today, I was talking to a neighbor who recently came out on the better side after a battle with lymphoma. He told me, "Here is the thing. The treatment may not be perfect, but at least they have treatment." How true. It does not make the SEs any less or the experience better, but it does put things in perspective. He actually made me feel a bit better!
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Ingerp, Becca, thanks for listening and for the encouragement. I can't tell you how grateful I am to have you all to talk to, there really is no one else that gets it.
Hapa, I always think of you as having a very similar situation to mine, glad you could join my vent-fest lol. It is honestly driving me nuts not having a clear plan or date for surgery yet. My MO told me the surgery should be 3-4 weeks after my last chemo this Thursday, but my appointment with the BS isn't until 7/9 and I have my MRI immediately following that appointment which seemed backwards to me also. If she doesn't have the MRI results yet, how can we plan my surgery?
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Sidalee--at least in my world the surgery appts can follow soon after the decision is made, like 1-1.5 weeks. That will still be in the 3-4 week window. I'm sure it's frustrating but I'm sure it'll all work out for you.
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Thanks Ingerp, it seems crazy to me that they can coordinate everything that fast, but I'm sure they do it all the time. My mother is planning to fly in for the surgery and I haven't gotten her a ticket yet because we don't know the date--could be interesting if we only have 1-2 weeks notice!
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Hi Ladies,
It sounds like more and more of us are finished with chemo :-). I had my last Taxol cancelled as I ended up with a bacterial infection in my blood. It kept me in the hospital for almost a week. I was a little concerned about missing my last round, but, my oncologist said that 40% of people do not complete chemo. That made me feel a little better. Still pretty run down and exhausted from the infection. I found out today that my surgery is July 5th. I am having a bilateral mastectomy. I qualify for a lumpectomy but, since I already have implants and will need radiation my surgeon is recommending a complete redo. It will be a skin sparing surgery and everything will be done in one surgery, using my previous implant scars, basically removing all tissue and old implants and adding new ones. She will also be removing a lymph node maybe. Sorry for the long story, just trying to get an idea of the recovery time and how long I will need help for. Assuming this will be more painful than getting my original implants. Can anyone give any guidance?
I love all the chats about sex, or lack thereof. Makes me feel better that it's not just me. We haven't even tried since the night before my first chemo. It's like my partner thinks I am sick and is worried I am contagious. Makes me sad as I miss the intimacy a lot.
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Congratulations to all of you moving beyond chemo. I just had tomorrow’s TCH (#5 of 6) postponed because of low platelets. This happened before and now I Just feel it will be even longer (like next April!) before I finish the Herceptin and get to move on... I am pretty bummed today.
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JStarling I am so sorry. I hold my breath every week until the blood work comes back. I know how bummed I’d be to have to prolong this process any further. But remember in the grand scheme of things, this is a blip. Not fun but you’ll get through it. Hang in there, honey. (FWIW—this is based on absolutely nothing but I’ve been pushing protein—more beef, and protein drinks through the day. My platelets have actually gone up, and my WBC count is back in the normal range. YMMV.
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Tlow990, I had a left side mastectomy with immediate implant reconstruction done in January, before chemo started. I found the drains the hardest thing to get used to. I had 2 on the left side, and one came out about 1 week after surgery, the other was in for just under 2 weeks. The best gift I got during that time was something called a "brobe," which has multiple pockets on the inside so you don't have to pin or clip the drains. My aunt had ordered it online. The brobe has 4 pockets, 2 on each side, so it would hold all the drains on both sides. Your hospital may also give you a support bra with clips and those hold the drains as well. Otherwise I was pinning them with safety pins to the waist of pants. Awkward. Make sure you have the supplies you need in advance - you need to "milk" the tubes into the drain bulbs and then measure the drainage twice a day. How much fluid you get is what determines how long the drains are in. My husband helped me, actually - I would slide an alcohol prep pad along the tube to drain it into the bulb, and then he would empty it and measure it (almost too honestly, but I probably would have cheated in order to get the drains out sooner!). Then wipe the tip of the drain off with another alcohol pad (important to avoid infection). And you have to sleep on your back for what seems like an eternity - I used one of those angled prop-up pillows, and then a side pillow to help avoid rolling in my sleep.
The other thing is to be extremely careful about lifting, and if you are having both sides done you will need help with doing any kind of activity that requires weight bearing from your arms. I am sure others have different stories, but those were the most challenging things for me. I really didn't have much pain - took Tylenol through the whole process, never needed anything stronger.
There is also a need to monitor closely during radiation to make sure the implants are doing OK. I am 6 rads into a 31 session course, and they say to watch for "tightness," and moisturize, moisturize - great advice I have gotten already from many of our sisters here. Best of luck with this next step, and hope you are feeling recovered from the infection.
Final thought for all our sisters discussing intimacy - sex does return, and don't be afraid to talk candidly with your partner. My husband was so wonderful during all of the surgery, chemo, etc., but really not touching or cuddling, or anything. When I spoke with him he said he was so afraid of hurting me - that it made him want to wait until everything was "done". We did wait through chemotherapy - and then had another discussion and things have resumed, but I think we may tend to think we're less attractive, or altered or something - and we should find out what they're thinking. It can be very different from what we imagine.
Wishing all a great day.
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just popping in to say hi to all! Hope everyone is doing well. For the ladies who are still going through chemo or arealmost at the end of treatment I wish u mininal SE. I'm getting ready for my exchange surgery and I'm super nervous. My last chemo was 4 weeks ago and I had some issues with swelling in my feet that seems to come and go but my onc put me on a diuretic for 3 days and the overall water retention has gotten way better. At the 2.5week mark I seemed to have neuropathy that had gotten worse and I asked my onc nurse and she said that some women have an increase in symptoms at the end and they should get better with time..well I'm happy to say she was right ...the neuropathy subsided and is almost non existent at this point.
I have been walking 2 miles every day and I just took my gym membership off hold to get some cardio in before my exchange surgery and 6 weeks of activity restrictions.
Im starting to see little hairs coming in on my bald spots and I never thought I'd say this but I'm excited for the chemo mullet. For those of you who are capping...keep going...even if you lose a lot it grows back faster.
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May-LOL
Chemo mullet!!!!
I Should try to recreate my 4th grade picture! What do y'all think?
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Omg Becky! I’m laughing my butt off! Love the mullet! I think I had something similar back in the 80s. I also had the gigantic “poof” on top of my head that was popular back in the late 80s. 😂
May07 glad you’re doing well. Good luck to you and the others with upcoming surgeries. One day we will all be able to wake up and say it’s all behind us.
I started radiation on Monday and so far it’s extremely uneventful. In fact I was in disbelief when the techs came back into the room and told me it was all over the first time. I thought they hadn’t even started yet...lol.
Hope everyone has a great rest of the week!
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OK the mullet pic is adorable, but that is without a doubt the mullet of all mullets. Great smile, though. My 4th grade picture is sporting some crazy hair, but not a mullet.
Steph74 - Good luck on the radiation. Uneventful is good. Hope this sets the course.
Thought I would give an update on my hair loss/ Tamoxifen dilemma. Over the weekend my right eyebrow fell off. Looking at my face after a shower, I was trying to figure out what was off. All of a sudden it clicked. Then the next day my bottom left eyelashes dropped. All a month past chemo. I cold capped and used a eyebrow/eyelash product during chemo to save them. Well, I did not realize I needed to KEEP using it after chemo, so I stopped and BAM. My 14 year old told me I could draw the eyebrow back in. I called MO and freaked out. She said this is pretty common, and it may happen a few times. Chemo reset the growth and it will need to get back on track at some point. If I only knew. Chemo...the gift that keeps on giving.
As for Tamoxifen, MO said that crazy SEs are normal during the first month, and as your body adapts and normalizes SEs should subside.
On a completely perplexing note, I was due for a 6 month liver MRI on what they think is a hemangioma. The MRI center calls back after booking the appt and says No Go. Apparently, somehow I came out of surgery on Jan 30 with a tissue expander that has metal and is not MRI compatible. Some are, some aren't. I had no clue what was what, nor was I given any choice of options. Two weeks before the actual mastectomy in Jan they knew I was going to have to have a follow up liver MRI. So, now no MRI, and they do not have a solution. Exchange surgery is not until completion of all treatment which means 9 more months of Herceptin. I am still trying to wrap my head around this.
Wishing everyone a great week of easy and successful treatments.
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Becca, so sorry to hear of the MRI issues - hang in there! I get the eyebrow thing - I am now exactly 8 weeks PFC and literally have about 3 eyebrow hairs on each side - there is not enough wax, powder and pencil out there. Lost more lashes recently, although I can see tiny fine baby ones sprouting, which who knows may also have to "reset." I will say my hair war is now even in the battle of the brown and the grays, with growth more steady now. I can again sport Demi Moore's GI Jane look, although so far it's only been in the house or with my brother, who said I looked like Sinead O'Connor instead...
Bec-ky, LOVE the hair! OMG! I say go for it! May - good, good luck with the upcoming next step! Steph, best of luck with your rads - I had my first RO visit yesterday 7 treatments in and only some pink areas and what the nurse called "flashing," but holding up so far. I am ripping through the oils, etc., I bought, but at least I smell really good through all the greasiness!
Best to all, whether looking to the end of chemo - it does finally arrive! - or getting ready for the next step of surgery and/or rads. We are all getting through this!
Good wishes to everyone from the very rainy Northeast!
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Hello Everyone,
I hope everyone doing good ,been a while since my last post here..I finished 3rd chemo about to received my 4th next week Tue but since then I'm having 2nd thoughts if I will continue the rest. After that 3rd chemo I'm scared to come back I don't know what to think.
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Bec-Ky - you're brave. I'm not showing anyone my 4th grade pics. I looked like a boy.
Yang - I don't really know what to tell you. I think there's a lot of calculus that goes into the decision to stop chemo due to side effects. For me, I think I'd go through with it unless the side effects were literally life threatening, but then I have an aggressive cancer that was pretty far along when it was found, I need all the help I can get. I'm also doing neoadjuvant chemo to try to shrink the tumor to get a better surgical outcome. If my cancer were less aggressive and/or caught earlier, and it was already removed, I would think of the chemo as just insurance against recurrence and would be more inclined to stop if things got rough. You don't show any of your stats about your stage or receptor status, and didn't say what side effects you had so I can't really say what I'd do in your situation. But my dad's oncologist used to always tell him "there's no point in getting rid of the cancer if the cure kills you". Good luck with whatever you decide. This stuff isn't easy.
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Yangsainst
Her stats are:
has 6 AC chemo's total and has completed 3 with terrible SE's
Tumor size is 2.6, ER+,PR+,Her2-
Radical mastectomy for the surgery
She had 1 out of 4 lymph nodes positive.
She's 34 years old.
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Yangsaint - some of the members on this forum have gone through/or are doing 4 rounds of AC. Have you considered trying the 4th one and then seeing if they can switch you to another therapy after that? So sorry you have had such a tough time!!! Of course it's a very personal decision, but you are so young, and like hapa said, you want to hit it hard. Yes, chemo is crazy - we are poisoning ourselves to cure something else. It's a strange thing, but it is effective.
Bec-ky, thanks for sharing these details so we can help offer Yang encouragement. Yang, please hang in there!! And are you supposed to have radiation? Sounds like you are at the stage and type that radiation would be offered!
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Yang - you're really young so I'd probably try to do at least one more round like Wild said. Maybe you can ask for a dose reduction and/or ask to switch to a different chemo after the fourth round. Keep in mind that for hormone positive cancers, hormone therapy is pretty effective, often moreso than chemo even, so if you will be getting tamoxifen or aromatase inhibitors after the chemo that will reduce your recurrence risk a lot too. I'm sorry this has been so tough for you.
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Yang. I know u had a ruff time with low counts. Did they give u a shot 24 hours after chemo to help bring ur white count up? And hapa has a good point u drive this treatment plan so u tell them what u want and maybe they can give u a different treatment plan..i have felt several times like i wanted to give up..Its part of ups and downs emotional and physically..but im still going thru it..
We all have your back!! Sending u good vibes..
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I agree... At least do the 4th one and ask about getting started with radiation after that.
Also... ask about Tamoxifen, and if you will be starting that.
I know this has been terrible for you and you've just been miserable, but I know you have a lot of life left in you! I want to see you fight and WIN! It won't be easy, but you will look back and be proud of yourself! We are all rooting for you and know just how hard mentally this all is.
Keep us informed please!! ❤️
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Yang - You can do this! I agree with the others, if it is too much for you, please check with your oncologist to see what other treatment options there are. Everyone reacts differently to chemo. What is easy for one, may be impossible for someone else. Being hormone positive, there are several treatments available, although most doctors try either AC or a taxane based infusion chemo first. There are pill forms of chemo and hormone therapy, also lupron shots. I know one lady who has been through the ringer the last ten years with advanced breast cancer, but her doctor put her on a new pill last year, and she is doing fantastic, so well she has been completing half marathons. She looks great now. So please, please, ask your oncologist to explore other options for you! There were moments for nearly all of us where the SEs were overwhelming, but remember your mental and emotional state is half of the battle...willpower can make a difference. Some days I had to force myself to say "I think I can, I think I can." Sending you positive thoughts!!!
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Hello Ladies ,
You are all amazing and thank you for all you're encouragements! Bec-cky, Hapa,Wildcolonial,Udrago71,Becca953, thank you so much..This morning I ask another Doctor she said I need 6 because that's what they give and the dosage of my chemo is already low. When I was there at the hospital on our way home I throw up again then now my stomach feels scrambling if that's the right word I don't know why maybe just something I ate.
Then this Doctor said about doing tamoxifen for 10 years.
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