Chemo starting December 2017
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It’s been 4 1/2 weeks since my last chemo treatment. I’ve been experiencing Edema in my feet and ankles mostly, I think it’s only now starting to improve. The chemo side effects seemed to be cumulative with the taxotere. I haven’t been able to do much but I think I’m starting to feel better. I’m almost half way through radiation and will be starting tamixofen next week. I haven’t seem much in the way of hair growth, a little bit of white fuzz mostly. Strength to us all
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Good to hear from you girls mjb sswp and dark...
Smeegle in LOR lol... do you mean Gollum dark?
Daniz, missing you. How have you been darling? My best for you.
Today is the day I completed my chemo. I pray to the Almighty that this is the LAST time I lie on this couch. I pray that all of us can go through this with His blessings and that we can be disease free till the day we see Him in heaven.
A close friend of mine, at her late 40s, is announced critical today, due to the very advanced stage of Ca. I pray that she pass on with dignity and free from pain.
Hariry
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Hariry - congratulations on finishing chemo!
mjb - You did taxol/herceptin & radiation at the same time?!?! That is a full on. Are you finished with both now? How is it going?
Sswp - You are flying through radiation. Sounds like you start tamoxifen right after. I'm hoping to negotiate a bit of recovery time from radiation. I am a bit nervous about tamoxifen side effects, so I want to be in good shape before starting. I keep hearing from people near me that they had no problem with tamoxifen. Fingers crossed for us too!
JVP, Swewing, Daniz - how are you all doing post surgery?
I am in week two of radiation, growing back eye lashes, hair, fingernails. Doing pretty well on energy and attitude. Still having lots of numbness and aching in my hands. But it is getting better.
Hugs to everyone
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GenevaC, Yep! Radiation, Taxol/Herceptin at the same time. I had received 4 of the 12 weekly Taxol/Herceptin infusions when my radiation started. Then, I received a total of 33 radiation treatments. I should have finished my Taxol/Herceptin on the 18th of this month, but during my last 2 weeks of radiation, the infusions were delayed due to low blood counts. So, I've had 2 infusions since finishing radiation and have 2 more to go! Fingers crossed that I have no more delays. I'm ready to be done! I was feeling pretty good, just mostly tired. Then last Thursday I felt like I got hit by a truck, had infusion Friday and a pretty rough week this week. Today is a good day and I go for another infusion tomorrow! I had to remind myself that I was probably feeling better since I had the 2 week break from the Taxol. Now, here we go again! Such a roller coaster!
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Congrats to those that finished chemo!!
I had a lumpectomy and surgery went well. Even though it looked like there was a lot of residual disease, it came back as a complete response! My nodes also came back negative so they only did sentinel node biopsy. So those are great but I have a seroma in my armpit and one in my breast. It's kind of got me down because they're painful and impacting my arm movement and I think I'd feel really good right now otherwise. My heart function dropped since my first echo and they're sending me to a cardiac oncologist. I don't think it's serious but still scary and they need the cardiologist's approval to give me more herceptin. I start radiation in a few weeks. I like my radiation oncologist and he chose hypofractionated (shortened amount of days) so I'm excited about that.
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Hariry: yay for finishing chemo
GenevaC: I started tamixofen yesterday, I have 8 radiation treatments to go and so far I've had minimal SE's with it. Still struggling with edema and weakness in the legs amongst other lingering SE's from the chemo.
MJB: I hope you don't have any more delays.
JVP: Congrats on the results of your surgery.
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I had my last Taxol today! Now I feel like the true healing and getting back some kind of new normal can begin! All I have left is Herceptin every 3 weeks until the end of the year, or so. So very grateful that I’ve been a textbook case. Awesome response to treatments. My heart is with all of you! Praying for positive outcomes for all
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HI girls,
Congrats on the completion of chemo, mjb! This thread was started 6months ago... and we've been through this tough time. Can't believe it!
Jvp, have you already started with RT? Mine will kick start in another 2weeks. Fingers crossed everything would be fine.
The burning tongue, tingling over the toes are not going away. After 2weeks. My big tummy (due to steroid) too. But I think the energy level is improving, after all.
Hugs to all
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mjb, congrats on finishing chemo!
Hariry, first day is the 13th! I thought this was an interesting article and the stats eased my mind a bit (wait what?!) when I came across it.
It starts out:
"Nearly 85% of patients surveyed 6 or more months after completing radiotherapy as part of their treatment for breast cancer reported the side effects were not as bad as they had feared or expected. Approximately 92% of the 269 patients treated with breast conservation and 81% of the 58 patients treated with mastectomy agreed with the statement, "If future patients knew the real truth about radiotherapy, they would be less scared about treatment." "
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Hi everyone greetings and kisses from the Caribbean bynow its got to be heating up where you live. So no more warm hugs i'm only sharing pecks on the cheeks. 😊 Glad that everyone is coping in there own way. We'll get thru this, most of us are in the last phase of our respective treatments so hold on tight we're almost there.
jvp-thanks for the article.
Hariry - I have the tingling in my feet and i'm about 4wks done with AC and Taxol Chemo. So sorry to hear about your friend but let God's will be done he knows best.
GenevaC - did you have any skin issues with rads? What cream did you use etc
Stay well. The race is not for the swiftest but for those who wndure to the end.
Hugs. Dark13
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hello all - I’m done 18 of 25 rads, and only had a light blush of a sunburn last Friday. It’s gone now after the weekend off. I’ve got a 112 km round trip to the hospital but otherwise rads has been fine. I’m more and more tired, both physically and psychologically. And realizing that I’ll need to find a new mentality once I’m no longer full time cancer-fighting. Apathy is my biggest side effect now.
Best wishes to everyone with lingering side effects (I still have 2 numb toes) and the next steps of treatment.
Genec
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Hi folks, how you'll keeping hoping that everyone is coping with the various lingering side effects.
Finished 4 rounds of Rads nothing to talk about using Aveeno Moisturing Cream on the area.
Does anybody have ay tips on what to do for neuropathy of the feet?
Smooches and hugs
Dark13
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HELLO everyone!!! hope y'all doing well. I haven't posted much. Honestly I took a break from all the boards I'm on everywhere even on Facebook I had to take some time off from the "cancer" scares and talks. Peoples stories freaked me out for a while.
I can't lie but say that I am jealous of you all for doing radiation and/or mastectomies and other things. I'm back in the chemo boat. I had my emergency lumpectomy on April 27th. The surgeon said she did get clear margins and they said it was not in the lymph system which is great thank the LORD for that!!! They did confirm I was 0% ER And PR so im still triple negative.
I got a new oncologist one who specializes in tnbc and in breast cancer. She does tons of trials and studies herself so I am now with her. She put me on more chemo. I started last Friday with Carbo infusions and on Monday I started Xeloda, which is a chemo pill that I'm taking. I take that 3 pills twice a day 14 days on and 7 off.
I'm supposed to get a total of 4 carbo and 6 months of xeloda. I pray the cancer doesn't come back or form again. But for now all I can do is pray and hope. I'm spending the summer with my 6 year old and will try to enjoy every day I get with her.
Hope you all are doing well. 😘😘😘😘
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Hey sweetie Daniz,
Good to hear from you. Honestly I was worried about you and have been keeping you in my prayers. Good to know that you are in good hands. Definitely not easy. Keep up the good spirit. (Do you need to go for radiotherapy after this?)
Dark13, my feet and toes are still numb. A month PFC and now my hands become stiff and painful to make fist. Hmmm... no idea how to get rid of them.
Completed first week of radiotherapy. Two more to go. So far so good.
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Daniz - good to hear your news. I wish you every strength for the ongoing chemo.
Hariry - I also got that stiffness a few weeks after finishing, mostly hands but knees a bit too. It’s mostly gone 2+ months later (oncologist said it’s normal).
I’m done 5 weeks of radio - whew. Going to take a few weeks to recover before starting tamoxifen. Radio oncologist suggested different regime involving inducing deep menopause which freaked me out. Got second opinion from my surgeon since he is gynaecological specialist & he strongly recommended against since menopause regime would have severe negative effect on my sex life. Not that I’ve had one this year but I want to be a “normal” 41 year old again!
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Welcome back, mjb. I finished my radiation almost 2 weeks ago as well (last chemo was April 6) and I have had the same thing happen to me. I was mistaken in believing that my SE would slowly, but consistently get better in a linear fashion. I questioned the PA and she explained that first, it could take 4 months or more PFC for things to really clear out. Second, she said that "we've tricked your white blood cells into a pattern and they'll still function that way for a while longer until your body figures out that we're not giving you a beat down every 3 weeks." So side effects may continue to come in waves. My WBC never got too low, but they're only now coming back into the normal range. They've been checking my blood before the herceptin infusions. So I've been experiencing waves of neuropathy, fatigue and a bunch of the little, annoying SEs like, runny nose and my eyelashes/brows slightly growing back and then dropping out again. So you're not alone. I exercised (weights, swimming, yoga) a lot prior to DX and now I've become convinced that regular exercise, keeping lean muscle and a reasonable weight simply HAS to be part of my prescription for preventing a recurrence (not there yet; it's a journey). I've read that women who make it 2-5 years out can start to feel less anxious about recurrence, but personally, I'm still in the fear mode where every lump, ache or pain has me on alert. At least when I'm exercising or just walking out in nature, I can sometimes put the fear aside a little.
I started my daily AI (Anastrozole) and so far have encountered diarrhea as the primary SE. I've read that bone and joint pain can sometimes occur, but I'm just going to keep lifting weights, swimming and doing yoga so I'll probably never be able to differentiate pain from those activities, from the AI side effects. Some mornings I get really angry that I can't just have ONE DAY free of feeling less than normal. But I'm never going to be the same physically. If I'm going to live to 95, I'm just going have to come to grips with that.
I'm curious if anyone has spoken with their doctors about the latest "breakthroughs" that came out of last month's ASCO meeting. There were "headlines" here on BCO.org about 1) Herceptin for 6 or 12 months affords the same outcome, and 2) chemo for many early stage BC patients may not be necessary. My MO said "no" to stopping the Herceptin. He's more conservative about jumping on to the latest study results, plus, I haven't had any heart side effects, so he's keeping me going. And I'm HER2 positive and have already had chemo, so I won't benefit from the new chemo studies. I was just wondering if anyone is having their treatment plan changed because of this new information.
Dark, thanks as always for the uplift. Especially in spite of your problems with the Taxol. Taxanes in general seem to cause a lot of the hardest SEs to deal with. What was the outcome of the xrays for the cough? Good news, I hope.
Daniz, you've been in my prayers and I hope things have improved for you. What did you learn about your tumor after the surgery? Were there additional tests (Oncotype). Did they re-grade it? You had so many questions about the change in the tumor; I hope you got good answers (and maybe a second opinion?)
Hope you can all see some positive light these days.
Mindy
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I just finished day 9 of radiation. I've had very little skin reaction so far and I'm happy to be done for the weekend. I also restarted herceptin infusions but side effects for both aren't bad so far. I'm feeling a bit healthier because they put me on a beta blocker & I've been getting a lot of walking in since I'm using public transit to get to my appointments every day. 6+ hours walking each week for the past three weeks with a little bit of other exercise thrown in. I can't believe how much muscle I lost during chemo. It's ridiculous! I can only do the easiest of exercises right now but I'm hoping to graduate to more strenuous stuff again soon.
Daniz, it's good to hear from you and it sounds like you're in good hands with your new oncologist. I'm happy you were able to find another treatment option even if it does mean more chemo.
GenevaC, taking a few weeks sounds smart. I'm feeling pretty worn out as well and had an especially tough time first starting radiation. I had some sort of anxiety attack that forced me to figure out what contributed and I realized there were a lot of things stressing me out constantly so I've been working on minimizing stress and so far it's helping me feel less overwhelmed & hopefully it stays that way!
Mindy- I think the best part about the herceptin study is I'd feel a bit more comfortable if I had to stop infusions early. I think it's such a big jump to go from 12 to 6 months that they probably need more evidence first.
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Hi Ladies,
Just poppoing in from the Caribbean to sending some love. Yep we are still going through it SEs and all but hey we are getting nearer to the end of the tunnel....I can feel and see the light. I guess the hardest treatment phase (chemo) is over for most of us. Rads not so bad we just got to take care of the skin lather that cream on hunnies. I walk with my cream to work try to apply about 3times per day.
With regard to the cough, according to the x-tray there was nothing to worry about. But like most of you every pain or unusualness get me ready to see my Onco.
The neuropathy is a mother, its just not going away...there are times when I don't feel my toes and the balls of my feet hurt sometimes othertimes its just numb...these Doctors here says there in nothing they can do for it...I have been massaging, soaking in epsom salts, and doing some exercises I saw on the net it helps a little but its slow healing...geez. I miss wearing my high heels.👡👢👠 I detest flat shoes but how the tables have turned inthe space of 2 weeks I have purchased 2 flat shoes. Sometimes it really gets to me but i just plop on my soggy flats and keep it moving. 😊
My eyebrows are back...yeah!!!👍👍👍👍 My eyelashes are struggling....bummer 👎and my hair is a hot mess..double bummer👎👎 its growing out but looks nothing like my pre cancer hair...its thin, straight, patchy and it grew out white, i'm completely gray. My husband does not want me to cut it but I can't deal with unhealthy looking hair. Giving it until August no improvent and i'm chopping it off. I look awesome with shorthair anyway 😆😆😆😆and i'm gonna rock it. Been watching some bald headed women on Pinterest for some inspo.
What can I say about rads...I have 3 more sessions them I done (15 roundz). I hope the skin holds up and I hope that my bummy feeling goes away. I am not feeling sick or tired but my taste is whack everything tastes damn awful, my appetite is shot, I am testy everything gets on my nerves, I have no desire for sex💏....no fun for hubby he is not a happy camper .....gals is this menopause???? I just don't know.
Anyways it is what it is..sigh....
On a brighter note though....hang in there, we can do this, the hardest part is almost done, no kill joy, no negative thoughts, our healing starts in the mind, we can and will endure, fighting to the end. We Are Survivors.
Hugs & kisses my lovelies.
Dark13
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Hey Dark! Glad to hear you are still going strong. My hair came back straight and patchy too. I have the barber shape it up so it doesn't look crazy but I do wonder when/if my normal texture will return.
I'm sorry to hear about your neuropathy. The effects of this treatment are more than a notion. I wish you and all of the sisters in treatment and out all the best.
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Hey everyone how you alls doing? I am happy to report that i'm done with radiation. 15rounds. My skin got pretty dark thank God it did not break knock on wood it doesn't over the next few weeks. I'm creaming it a lot so it would not itch.
My throat is hurting though did any of you had that happen? My Rad Dr. said that it happens because of the spread of the rays.....😔 Gargleing with salt water for some relief, eating/swallowing is difficult.
@Gigicommon; @Diveslikeagirl thank you for your comments.
Stay strong my lovelies.
Dark13.
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Hey everyone, hope all is well! I had double mastectomy on April 9th with expanders placed for reconstruction. Since then I’ve only had 2 fills due to incision infections.
I’m seeing a physical therapist who specializes in lymphedema. I’m not having any swelling in my arms but it is great to speak to an expert once a week. I have full range of motion and am getting stronger. She really has helped loosen up my pec muscles which helps make these horrible expanders more comfortable.
I’m thinking about getting a tattoo over my port scar. There are some awesome options! My hair is coming in all gray! Yikes, that has been hard to handle, but I do like having hair and eyebrows and eyelashes again.
Be strong everyone! I need to check in more because I miss hearing from you all
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Hey there, Swewing! Nice to hear from you! I’venot been on much myself. My last Taxol was 6/1 and my hair is just now growing at a rate that I can see differences almost daily! At first, it was all super white/grey. Now, it’s much darker all around the sides and starting to fill in darker on top. Even though it started to grow a bit toward the end of Taxol, it was almost transparent, so I still looked totally bald. Maybe yours will darken, too.
Eyelashes and eyebrows are starting to trickle in, too. It’s exciting to celebrate these small things! 0 -
HI everyone,
Just wondering how is everyone doing? It has been a long road, since December. Missing you girls. Has been 2months since my last chemo. I'm feeling much better. Feeling myself. Even though the neuropathy is not fading away. But I'm okay. Bearable I'd say. The dark skin after radiation is healing bit by bit and I'm sure all these will recover, ultimately.
Swewing, you look great! My hair is very much like yours. Thinking of getting another photo in front of the Christmas tree, with my new hairstyle this year-end 😉
Hugs and kisses to all
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Hey Hariry! Nice to see you! My neuropathy is hanging on, too. Not too horrible, though. I have a lovely black toenail, too. It's nice for so many things to be getting back to normal, though! Looking forward to seeing my hair at Christmas, too! The last "good hair" pic I have is from Christmas Eve 2017. A few days after that, it was gone..
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Hello everyone. Good to see that we're all on some kind of road to recovery. I finished my chemo April 6 and radiation June 12. I have several messed up (black) toenails, but my fingernails are almost grown out (still ridges in them though). I still struggle with neuropathy that seems to worsen every couple of weeks but I'm happy to be wearing sandals so that I can stretch my toes, ankles and arches. The fatigue still vexes me. I started back swimming a month after radiation (my MO was concerned about chlorine and dry skin) and it feels wonderful. I'm much slower than before but I kept up my strength training during chemo/radiation so I've got some muscles to start with. I still have Herceptin for the rest of the year and the runny nose to go with it. I go for my baseline bone density test tomorrow. So far, my echocardiograms have come back normal. Monday I go for my long-deferred colonoscopy - ugh. During chemo I developed some intermittent bleeding what with the back and forth diarrhea/constipation. I'm sure it's hemorrhoids, but I needed the colonoscopy anyway, so it'll be good to figure things out. I can't believe I just wrote that sentence to women I've never met, but I feel like we're sisters, all the same.
My hair has come back in soft and gray and I'm just now starting to go without a wig (except at work). Many of the on-trend women I know tell me that my style is now "a thing." (I WISH that was me in the picture).
Women are paying their stylists hundreds of dollars to achieve what it took me a mere 8 months of misery to achieve!
Hariry, Dark, Swewing, mjb, good to hear from you all and to know that you are improving. Swewing, glad your surgery was successful. Take care, everyone.
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Hey ladies how are you all? I'm doing okay. I just did my 2nd carbo last Tuesday and I'm on xeloda chemo pills too. I'm on 7 pills a day. It's rough but I haven't had really any nausea I take my anti nausea meds round the clock. My new oncologist is much better and they manage symptoms waaaaay better and really have a ton of drugs out there for the nausea. I cannot believe the way I suffered in AC and my old Oncologist didn't really change anything or add any meds to help that. It's so crazy.
The ones that had a lumpectomy??? Do you guys feel anything in there????? Is there anything you girls are feeling? I'm feeling something old what it is but it's tender. I have an ultrasound next Wednesday but I'm freakin out AGAIN. Every time something bad happens with me and I just can't seem to shake it. My oncologist last week said she can't feel anything she said that to her I have healed nicely. But I still called my breast surgeon and I have an apt next week.
Someone had asked me about my pathology of the tumor after the lumpectomy. They said that 90% of the tumor was still cancer. It grew .4mm while on Taxol and measured at 1.8cm when they removed it. They did get clear margins and there were no node involved. I'm triple negative. My new oncologist requested it checked again for ER PR and HER2 which all came back negative again. I was hoping it would be slightly positive or something but oh well what can you do. I just pray pray and pray that this doesn't come back but it's so scary. I don't know when I'm having my surgery yet I still want a double mastectomy. My breast surgeon is recommending radiation too but the radiation doc was saying I don't need it I'm doing double mastectomy. 🙄🙄🙄 which is annoying. But I guess they know but the fact that my breast surgeon thinks I need it makes me really want to have it. I trust her. It's stressful figuring out what to do. My hair has grown in a lot. It's pretty good maybe 2-3 inches or a bit more even
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Diveslikeagirl, that's an amazing photo! Is that you?
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mjb, glad to hear from you too. It was a miserable Christmas last year wasn't it? My first chemo went in few days before Christmas.
Diveslikeagirl, I wish I can be as brave as you, to just rock with my half-inch-hair.... and I'm sure you look just as great as the one in that photo😉
Daniz!Oh daniz, good to know that you are keeping well and that your new onc is such caring dr. Have faith, my dear, we'll be fine. that's for sure. Regarding radiotherapy for those with double masec, some advocate to cover the pleura (lungs lining) and skin. Just to be safe. I guess the experts not coming to a concensus, probably due to lacking of stats. You may ask for second or third opinion.
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It's not Miley cyrus... looks similar. Can't remember her name
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I left the house today for the first time without a hat! Truth be told, I was running late and couldn't find it! I have a "go to" that's my favorite, but I tend to fling it off as soon as I walk in the door and don't wear it at home...Last seen Friday evening. Ha ha! My hair is very, very short and pretty thin, but it is what it is! Feels liberating! I realized that my uneasyness is not because how I feel or think I look, it's because I don't want others to be uncomfortable with it. So weird!
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