Starting chemo February 2018
Comments
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Butterfly- congrats on finishing chemo and good luck with your event in October!
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OMoth & Jo6359 - thank you so much for your advice about massage and PT. I found an RMT in Vancouver who specializes on breast health and she clarified a lot of things for me. I have to admit I had no idea that the skin would adhere to the muscle in this way. i didn’t do reconstruction but I imagine you experienced something similar over the breast. Anyway, I’m so glad I found this RMT. As you both already know, the massage really helps and she expects me to get full range of motion with the right stretches.
One tip for you Moth, she did mention that the focus of the hospital PT is rehab for daily tasks. If you have any concerns with regaining your full range of motion at full extension, a breast health specialist like her could be useful to you. I’m thankful to have the option of seeing someone about once a week for guidance. That said, if you already feel good, I think most of the exercises she will show me are covered in the BCCA booklet.
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Congrats Butterfly on finishing! Yay, you strong woman you!
Walden - Oh I'm so glad you've found someone that will be helpful to you in your recovery! I don't have any ROM issues and supposedly this PT at SMH is also a breast specialist. Her appointments with breast surgery patients are for lymphedema prevention and monitoring and for range of motion assessment. My rom was essentially 100% within weeks of the surgery; she prescribed stretches to me for the week post surgery and then new stretches for week 2 & on.
I actually just started seeing an RMT again just to keep my back relaxed and limber and because I read that massage can help with peripheral neuropathy so I thought I'd do it while I'm on taxol (even though I don't have any neuropathy yet - fingers crossed it never comes) Might as well use up the extended health benefits
I'm day 3 post taxol 3 and all is fine. So far, taxol has been really easy on me (though it's still crashing my neutrophils).
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moth-I noticed you had whole breast radiation, did they include your nodes by your armpit and clavicle? Just curious because I’m also zero nodes. RO is recommending it, but giving me the option of not doing nodes
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Walden - haven't had rads yet. My consult with the RO is coming up in the next couple weeks. I just assumed we would be doing whole. My tumor was close to my cleavage at the bottom of the breast & they may want to do the lymph nodes in the center of the chest too, as well as the axilla. I guess we'll see. If they offer it to me, I'll do it. I'm in the "hit it with every damn thing we can" camp because recurrence/spread scares me more than side effects.
I had a close margin (<2mm) at one of my edges so I think I'll need a boost as well.
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Butterflylily- congratulations on being finished with chemo. Fantastic.
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moth- I'm with you. I am terrified of distal reoccurrence and not overly concerned with side effects from chemo. You have had a hell of a time with chemo. My side effects from chemo has been minimal. There isn't anything fun about chemo. I'm trying to be positive that once I start radiation that I will tolerate it as well. Through it all you gave us great advice and a wicked sense of humor. Also we love the pics of the new dog.
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I haven't posted here in quite a while, so I thought I'd chime in and update everybody on what has been going on with my breast cancer journey.
I was scheduled for 4 rounds of chemo. The first one was scheduled for February 19th, and the last one was scheduled for April 23rd. Easypeasy, right? I thought I'd just fly through it and get it over with and move on and start radiation. But life had other plans for me.
The immediate side effect that I get from taxotere is water retention -- but the first time it occurred, I didn't know what was happening. I couldn't pee, and I thought that I was just very dehydrated from the chemo. So I kept drinking a lot of water -- and landed in the ER -- and then admitted to the hospital -- that night, because I had messed up my sodium levels so badly. It took them 3 days to straighten them out. Every time I get chemo, I now expect to not pee very much (or at all) from anywhere from 12 to 20 hours. After that, I'm okay. Needless to say, I am now very careful about the amount of water I drink post-chemo. Just little sips of water and Gatorade until I am once again peeing normally.
I'm curious -- does anyone else experience this weird side effect?
I had chemo # 2 right on schedule. But a few days after chemo, my bad boob suddenly became red, a little warm, and extremely swollen, and I was running a little fever.
Long story short, I was hospitalized 2 times for this. I was put on IV antibiotics both times and then sent home with oral antibiotics. It didn't work. They finally brought in the big guns for Gina -- an infectious disease doctor (my new best friend!!), who figured it out.
I had a little bit of fungus -- just a few dots of it -- underneath my breast. And the Decadron (that horrible steroid that I take a few days prior to chemo that gives me insomnia) -- turned that little bit of fungus into a raging inferno. I never had a bacterial infection. But my blood work kept pointing the hospital doctors in that direction. It was so frustrating and upsetting to me, because chemo # 3 was cancelled 3 times. My wonderful infectious disease doctor went to bat for me and gave me the all-clear to move on to chemo # 3. He prescribed the drug that people take for toenail fungus. It has been slowly clearing up the fungus problem, and the color of my breast is very close to normal now.
And when I take the Decadon, the next day my breast gets redder. When I no longer have to take Decadron, the color of my breast will return to normal.
My swollen breast was caused by a seroma. I had a huge amount of liquid in my breast. I had an ultrasound done, and then a radiologist removed some of the liquid from the seroma and had it tested to make sure that it didn't have any bacteria in it. It didn't. All clear. My body has since slowly absorbed all of this liquid, and my breast has returned to its normal size.
I had a bad reaction to the taxotere during chemo # 2. I turned bright red, and I had trouble breathing. The nurses came running with syringes, and I got better after about five minutes. For chemo # 3, they gave me some extra drugs so that I wouldn't have another bad reaction to the taxotere, but it happened anyway. I turned bright red, but at least I could breath normally. Next time, they are taking a different course of action -- adding another drug and slowing down the taxotere drip to half-speed.
I go in for my pre-chemo blood work tomorrow morning, and then I am scheduled for chemo # 4 on Tuesday, May 22nd -- my last chemo. God willing. And then I move on to radiation.
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momlovesherkitties- I'm so sorry chemo has be such a battle. I didn't experience all of the side effects you had but I did have a reaction to Taxol that sounds similar. They used many of the same techniques you described to stop the allergic reaction for me. Apparently allergic reactions are very common for Taxol and Taxotere. My only advice is let your nurse know about your allergic reaction for treatreatment #4. Dont be afraid to let the nurse know asap if you feel a symptom of allergic reaction. They can adjust the pace etc. as needed and confirm you fe better before proceeding with more chemo. I told my husband to speak up for me as soon as I gave him "the signal" because I would also get weak and not think straight with all the premeditation. I know it takes a great deal of bravery but you will get through it
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jo - I read in another thread that people who had gone through chemo first found rads pretty tolerable. People who do only rads find it harder. Funny how it's all relative, isn't it? When are your rads starting? Do you know already how long? I have a consult on June 1 & hope to find out the scheduling.
I've lost pretty much all my eyelashes & I have only about a few eyebrow hairs - including some which are totally not in the right place. I keep looking at them and going "Ok, seriously? Everything falls out except the ones that are nowhere near where my eyeybrows are supposed to be???" I should pluck them but I also kind of admire their tenacity. I wear glasses and I keep forgetting to draw my eyebrows on because I don't really notice they're missing until my glasses slide down my nose & I catch a glimpse of myself.
momelovesherkitties - holy cow, you poor girl! Wow, such horrible water retention. I hope your kidneys are ok. So good that you got a doctor who started thinking outside of the box and beyond bacterial infections & found the cause of your infection. Fungal stuff sucks. And then allergic reactions on top of it all??? Jeez, you just can't catch a break. I hope #4 surprises all of you and is non eventful.
new pup was trying out suntanning on the deck last week.
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debsmisto -Hoping to hear if you are okay. I’m having my last chemo tomorrow and I know we are on the same schedule. Worried about ya.. I know you were having another rough round
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finally checking in I'm so happy for those of you who have finished chemo and sad for those of you having a rough time with it I do understand. This last chemo has just knocked me out I am so fatigued and have the worst muscle aches in my legs but I have been working standing on my feet 6 to 8 hours a day every other day and somehow I get through it so yes Rock City my last chemo yes I said last hurray is this Thursday I'm not looking forward to the 11 to 12 days after that when I feel like crap but that is the last time chemo is going to do that to me at least for a while. I had a second consult with my plastic surgeon last week I wanted him to do the immediate reconstruction with saline implants over the muscle and he said he would do that if he can but if there's not enough skin to do that he's going to have to put in tissue expanders not what I really wanted to hear but for some reason I've decided I don't want to go flat. So I'm still pushing through got to get through this last chemo I'll check in with you guys when I'm in my recliner for that 11 12 days hope everybody is getting through their treatments and we're all going to be done soon. Pic is me walking my 2 doggies this am
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Hi all,
I just had my last 6 of 6 chemo treatment yesterday. So happy to be done with this portion of treatment. I still have Herceptin and perjeta for the remainder of the year, but that’s supposed to be a breeze compared to full chemo. No more steroids, yay! No more painful coldcapping either. If my breast mammogram and mri come back fine in a few weeks it’s on to radiation. I’m praying! It’s going to be a long year, but right now I’m just happy to start the final chemo recovery. I’m planning to at least enjoy today before my nasty side effects kick in tomorrow. My daughter has her choir concert tomorrow and I want to go so badly. I’ve missed most of both of my children’s event these last 5 months, I just want to make this last one. I’m praying the SE don’t kick in until the concert is over.
Deb- I’m glad you are ok now. Standing and working as much as you do has to make it a tougher recovery. Hang in there for the LAST round and then it’s final recovery time.
All of you Feb ladies are so amazing and have been such a great support network. Let’s all finish up our chemo and begin to feel better
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Rockcity how wonderful! Hope you will be able to attend your daughter's choir concert. I missed also a lot of my kids' events. May the rest of your journey easier than the one you have just crossed.
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Rockcity- congrats on being finished with chemo. Hallelujah. We're in the same boat I have one more chemo treatment left,then rads, herceptin and perjeta for a year. Hopefully you'll be able to make your child's concert.
Deb-just 1 more chemo! Yeah. Working on your feet all day has to be tough. Good luck with the reconstruction. I know a lot of women on this site who went through reconstruction with little or no issues. Wishing the same for you Hopefully it will be smooth sailing from here on in. I chose to go flat with no regrets. Occasionally I will wear a padded bra form. I'm so lazy I don't even put in the inserts. If any of my friends hug me my bra goes flat. I just laugh about it.
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Hi girls, thanks for the good wishes. So the radiation Dr I saw today is recommending 25 rounds of radiation, for those of you doing radiation how many rounds for you. Worse thing is both my MO and Surgeon said they doubt I'd need radiation since I'm doing bilateral mast so that was a real blow to hear today, this is totally making me second guess reconstruction I just don't want more procedures and Dr's visits than I have to, ugh. Anyway y share your radiation dosage if you can. Thank you
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Hi Debs - I don't know my radiation dosage yet. I think we will find out June 1. Wow, that's a lot of rads they're recommending for you - poor you. I know the feeling of just wanting to be done already!
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- Congrats Rockcity on fijisning chrmo
- And I pray that all tests come out negative.
- Deb happy for you also, you’re almost done, you’re a trooper !!
- Wanted to ask if anyone ever heard of lymph nodes being positive in subpectorial ? I haven’t found much more than a diagram online and nothing else.
- My BS is having a baby so I chose another and of course I chose one of the best and she specializes in studying and avoiding lymphodema. She told me she doesn’t see any subclavical Mets and is surprised my onc and other surgeon did not pick it up that it was written in error. She said she had my PET and MRI with contrast triple checked and they also did not see it. That positive report came from the first BC I went to before going to Sloan.
- Good news yes of course, but I’m skepticle . I asked for tests to be repeated but told not necessary.
- Any knowledge appreciated. This added radiation to my mix after surgery plus the already 9’more months of HP.
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Deb - medical mistakes are terrifying because it impacts our treatment choices and subsequently our lives. Mo believes I will have 15 rounds of chemo but I don't see the radiologist until 4 wks post chemo.. And the radiologist will have the final say. I need radiation because I had one positive lymph node plus my tumor was deep into the pectoralis muscle. We need to be our own best advocate and fight for different types of testing. Testing results are dependent upon how skilled the Physicians are who are reading and interpreting the results.
You seem to have hit the jackpot with your new doctor. I can appreciate how high your anxiety must be right now.
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moth-Your post about eyebrows made me laugh. I was looking in the mirror yesterday thinking the exact same thing. Waiting for my eyelashes, eyebrows, and hair to grow in too. Good news is we are all super fashionable according to the April issue of Vogue! They have a huge spread of nearly bald models in that issue
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So I got 1 hour added to my last chemo today, my magnesium was low so they did it in iv. Walden I need to go look at that issue of vogue, that is cool we will all be in style. My eyebrows and lashes are spotty at best, reminds me of the poor doggies you see on TV with mange 😥
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congrats on those who got done with the beast..
i have one more out of 6 and im done .. unfortunately i did not do herceptin with my last 3 docetaxel since i was low on counts.. and doctor told me it me it will be an added risk.. and adviced me to do it after chemo as a seperate treatment.. have any of you heard or adviced on the same?
I used to hate makeup but now im so thankful to Anastasia beverly hill for making lots of brow products .. 😂 i make my daughter fill in my shabby brows at least it looks better that way
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I finished chemo on May 22nd!!! I'm so relieved!!
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momlovesherkitties- congrats on your last chemo.
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momlovesherkitties- congratulations on finishing that chemo. The sign is great and your smile is priceless
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Congrats momlovesherkitties! How satisfying it is to see the end of a hard journey!
Deb, it is always difficult to know who to believe, especially when it is our health and a potentially mortal disease. 25 doses of rad seem a lot when they have reviewed their recommendation at the start of the year. Sometimes, I am wondering if drs say to do it just to make money. However, we want to do everything we can to decrease the risk of recurrence.
Idkidk, sorry butI cannot help you with your node.
Today i read an article about diet and cancer. Apparently they did a study and if you limit your fat calories intake to max 20% of your total calories you have a better chance to survive cancer or prevent it. But for us prevention is too late. http://time.com/5289246/low-fat-diet-breast-cancer/?utm_source=time.com&utm_medium=email&utm_campaign=the-brief-pm&utm_content=2018052419pm&xid=newsletter-brief&eminfo={"EMAIL":"xZE5M1+LDNBA/loN9sc3cLnid6L9hfrirJOuSQ8yulI=","BRAND":"TD","CONTENT":"Newsletter","UID":"TD_TBP_59149728-F279-4C80-8DFE-813085374952","SUBID":"84396177","JOBID":"753102","NEWSLETTER":"THE_BRIEF_PM","ZIP":"201118264","COUNTRY":""}
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Hello ladies,
It's been AGES since I posted - been trying to keep my life as normal as possible and not spend all of my time on the Internet reading about cancer! - so I wanted to check in and give an update, just in case anyone was wondering.
Last round of chemo is tomorrow! Should've been yesterday, but if you recall, I had a really awful MO, and I ended up having to fight to get a new one, they wanted to force me to see him again and get him to do a referral to a new doc (which everyone else told me was entirely unnecessary - it should NOT have been this hard to switch doctors, I nearly walked out of my appointment yesterday because they were going to force me to see that awful man again), so between that and the holiday this week, my pre-chemo check-up ended up being a day late, and so this week's chemo is Friday instead of Wednesday.
Overall, it's been fine - the only real side effect I've had is the hair loss, which is incredibly awful for me (initially, I looked like Linus from Peanuts, just a few strands of hair, but now that I've lost most of my super-thick eyebrows and long eyelashes, I look more like Gollum from the Lord of the Rings movies), but not a single medical professional here cares one iota about that (and yes, I'm angry and bitter about it). No nausea/vomiting, no weight gain from the steroids (I eat constantly these days, but I'm just really not prone to weight gain, been the same size since I was a teenager), no fevers/infections, no neutropenia, no mouth sores, no damaged nails, and even after three rounds of Taxol, not a bit of neuropathy (the doctors and nurses are very surprised by that). I have some muscle and joint pain for two or three days each round of Taxol, but it's manageable with Tylenol and it doesn't last long.
I did have a lot of fatigue during the four rounds of AC, so I'm currently off work. I wanted to keep working reduced hours, like I agreed upon with my boss, but after a few weeks of that, he complained to HR and they pulled me aside and told me that it was better for me to go on leave so that it wouldn't be considered a "performance issue." Reading between the lines, they were telling me that I wasn't working hard enough or long enough (which I wasn't because, ya know, cancer treatment - I just couldn't keep up with 60-hour weeks), but they couldn't say it in as many words, of course. I worked till the end of March, and I figure I'll go back after radiation, since my work won't appreciate me being away for an hour every single day for a month.
Otherwise, it's pretty much life as usual for me, my energy levels are pretty much back to normal on the Taxol. The biggest challenge right this second is looking like a cancer patient and not wanting to be seen like this. I look far sicker than I am (I really don't feel sick at all), and I don't like having my personal situation on display for the entire world to see, so I don't get out much anymore, I mostly stay in and keep to myself unless I have appointments. I'm hoping my hair will grow back quickly after treatment so I can get my life back - I'd like to ask my doctor for advice, if there's anything I can do to speed it along (for example, I have a friend who uses supplements to help her hair and nails and she swears by them), but I'm very discouraged, I get brushed off every time I bring up my hair, so I'm hesitant to keep asking about it if they're just going to scold me every time I try. The Cancer Agency here doesn't take hair loss and the impact it has on patients very seriously, and it's shameful.
I still have a significant amount of anxiety, especially now that I'm getting near to the end of treatment. One more chemo round, then 4 weeks of radiation, and that's it for active treatment, and that makes me nervous, being triple-negative. Nobody has given me a prognosis, nobody has told me what comes next in terms of monitoring or what to watch for, I have no idea what to expect, and in terms of recurrence, the MO told me one thing and the radiation oncologist told me something else entirely, so I don't know what to believe (and so I always end up dwelling on the worst-case scenario). It's hard for me to think about the future and being well and living a long life right now, I can't quite see it. I keep assuring everyone, the few people that I've told about this (family and a couple of close friends) that it's all going to be just fine, but I'm afraid that it's not and I'm not sure how to move past that.
That's about it, I think. It hasn't exactly been a walk in the park, being poisoned every two weeks, but it hasn't been nearly as awful as I was expecting. The doctors painted a horribly gruesome picture of what to expect during chemo, I expected to be hideously ill, and I just haven't been. It's been smooth sailing and hopefully will continue to be. I hope the radiation isn't too awful. If it all goes well in the coming months, I'm hoping to take a trip with my best friend in the fall to celebrate, she's been my rock this whole time, even though she's on the other side of the country. It's good to have things to look forward to, right??
(And I apologize if this didn't make much sense - the other thing I've had is chemo brain, so I'm a bit forgetful and a bit rambling and sometimes I lose my train of thought. Hopefully the brain fuzziness will go away once they stop poisoning me, too!)
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Hi AnxietyGirl - nice to hear from you again! You & I started chemo just a day apart & I was supposed to have the same dose dense protocol. Yay you, for being at the finish line!
Today was supposed to be my last day according to the original plan but unlike you, I was sick during the AC part and ended up in hospital twice (5 days each time) on IV antibiotics & had treatment delays during the AC. After that bad experience on the AC, the MO switched my Taxol to 12 weeklies so now instead of finishing today, I go to almost end of July. (& then I'll get radiation)
I'm sorry that you're feeling so bad about the the hair, eyebrows and eyelashes thing. Honestly, it doesn't bother me one iota and when my neutrophils are high enough, I go out bald and just enjoy myself. I think it must be hard for them to gauge how each patient will react to these things but they should be referring to a psychologist and dermatologist if necessary.
There are calculators you can run yourself regarding the risk of recurrence. I can post the links if you want. They're treating me as presumptively triple neg as well. The risk of recurrence for tnbc is higher but still, most people *don't* recur. For monitoring, they've told me that for the first 5 years I will have diagnostic mammograms annually & a check up every 6 months where a thorough physical exam is taken. You can see it in the survivorship guidelines http://www.bccancer.bc.ca/health-professionals/cli...0 -
Anxietygirl,
I'm sure we all know how hard it is to deal with the unknown side of this diagnosis. Some days I feel strong and optimistic and some days I don't. I do take comfort in knowing many other women with successful treatment that have come before me. I thought you might like to know that my mother was also triple negative, and the other details of her diagnosis and treatment match yours exactly. Today she is 18 years disease free. My aunt had a more advanced cancer at diagnosis 20 years ago, and she too is perfectly healthy today.
As for the hair, I felt the same way during chemo. Now that I have more energy I'm getting out more. Sometimes I wear a wig, sometimes I say who cares and just wear a hat for warmth. I've started telling acquaintances too. Sometimes it's hard, but I'm always glad I did because everyone is very supportive and it gets easier to tell people the more you do it.Wishing you all the best.
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Hi Ladies! It’s been a while since I posted. I had a busy beginning of the month. I am happy to report I am done with Chemo! Monday was my last Taxol. I can’t believe I am done with this part of the treatment. It has been a difficult path, but I am so happy I had you all to help me through it.
Next step is the surgery to get the permanent implants in place & port removal. Then that’s it. I won’t have hormone treatment as turns out the slight ER+ Is actually ER neg.
Taxol was much easier than AC. I had some minor muscle & bone pain. But very manegeable. I did get some fatigue. Especially now with Taxol #4. I tended to over do it since I felt better, and end up super tired a few times. I had to force myself to take naps otherwise I would be exhausted by the end of the day. I have some dark spots/coloration on some fingernails, but they seem ok overall.
My focus now for myself will be exercise. I need to increase the level of exercise to maintain a healthy life.
Congratulations to all those done with Chemo! For those who still have a little ways to go, you got this! 💪 Soon you will be done too.
Thank you for being part of this forum. I don’t think I would have made it through Chemo with my sanity if It wasn’t for you all. All your stories, all your tips & info, all your support! I am so happy I met you all! Cbok, thanks for starting this forum!
I’ll keep checking in.
🤗 hugs!
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