Starting Chemo June 2017
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Having trouble posting so I broke it up. I also wanted to report that I completed chemo number 3 out of 4 (Cytoxan/Taxotere). I had a sore throat and went to my internist for an antibiotic. It has been painful the last three days but seems to be getting better today. My bloodwork was good so the MO said to go ahead. Hopefully I will be lucky and have minimal side effects again. I do seem to be a little more tired as the treatments go on. Naps are a good thing. I have had a sore throat the past few days. Not strep. Got an antibiotic from my internist and my bloodwork was good so MO said to go ahead.
I asked today about what comes next. I knew I would be having a hormone blocker but hadn't asked which one. I found out it will be Arimidex. Makes perfect sense when I read on this site:
The ATAC study found that 5 years of Arimidex is better than 5 years of tamoxifen as the first hormonal therapy for postmenopausal women with early-stage, hormone-receptor-positive breast cancer. Arimidex is better than tamoxifen for:
- increasing the time before the cancer comes back in those who experience recurrence
- reducing the risk of the cancer spreading to other parts of the body
- reducing the risk of a new cancer developing in the other breast
Have a great weekend everyone.
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just had my #3 AC yesterday and was farily fatigued by the time I got home. rested on couch most of evening with a short walk around the block. feeling much better today but have been resting as well. will take a longer walk tonight. Finding the Emend tires me out more than the chemo so far. took my neulasta and will wait for the terrible bone pain which will start to set in by midday tomorrow! only one more AC to go then onto Taxol! Hope minor or no SE for those who are getting their next chemo next weks
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peachyjeann- the Nail envy by OPI is a clear strengthener. Sometimes I wore it alone (2 coats). More often I wore it (still 2 coats) under regular color. I got it at Target. It was pricey IMO- maybe $17?? But totally worth it since it preserved my fingernails . I still am using the same bottle. When my head was bald, and I had no eyebrows or lashes, at least my nails were looking goo
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hapB- I am very sorry to hear you don't have support and I can't imagine how difficult that must be. What about joining a support group at your cancer center? I see you are in Boston. I live in NH but go to Dana Farber for treatments. If I can help you in any way, let me know.
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Luwusu would any nail strengthening polish work?
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Good Morning, and it is a better morning - Day 6 after the 4th AC. I iced my shoulder area last night where there was such pain from my port, and propped a small pillow under that shoulder during the night. I had better relief in my shoulder/neck. Got so hot at one point, I tore off my pj top. It was soaked. I remember my mother used to wake at times with drenched pjs from going through menopause. I just slept topless the rest of the night. lol
I actually feel like I can run two store errands today without feeling nervous driving. So, I guess this is a good sign.
Luwu, I am definitely going to get some OPI nail strengthener. I think they also make the Nail Envy for brittle nails, but I will stick to what you suggest. I cannot imagine losing 9/10 toenails. How on earth were you able to wear shoes? Didn't that hurt?!
It just amazes me all the unexpressed SEs from our medical teams. I know they've done a wonderful job in helping us curb nausea, etc, and I am GRATEFUL for that, truly. But, if it were not for these boards, I would feel like I had missed out on very valuable insights as to how to cope/manage much of this.Susie, I am sorry you couldn't attend the concert. It's a bummer for sure, but paying it forward to your DH's coworker is a nice thing. It's just crazy how things we simply "took for granted" are just milestones to us right now. Are you still working?
I had a friend share with me, who went through this a few short years ago, that she essentially slept her days away. She felt like it was an avoidance technique, but whatever works to get you through the difficult times. I think I hugged the couch more than I needed to this week, but if I don't have my down time, how can I properly recuperate?
Julia, Those are interesting statistics on the Arimidex. Since I was not postmenopausal, I wonder what they will prescribe for me after chemo. I was told I will be on something for 10 years. I will definitely do my due diligence about the hormone therapy and ask lots of questions.
Tpralph, Hang in there, you just have one more to go! I pray that you will NOT experience bone pain this time.
Regarding Taxol for those who have started: My nurse said I will just take the Prilosec each morning like now. I will not have to take anything else (no steroids, Ativan for sleep, etc) and take the anti-nausea meds only as needed. Thankfully, I took one extra the first time, but I have only taken on the prescribed days/times thus far. Does this sound like enough? If that is all, then this Taxol is expected to be a whole lot less of an issue than AC. It is interesting that she told me some medical facilities do the Taxol first THEN the AC. I am SOOOO glad I have the AC out of the way. Why is nothing precisely the same in the medical community? I guess because no two people are the same.
I hope better days for each of you and continued strength and healing.
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Kim possible
My premeds at infusion for Taxol are 2 to 3 steroid pills depending on if i am getting hereptin and perjeta that day, iv Pepcid and benedryl until they switched it to a Zyrtec tablet which I would recommend because the iv benedryl was horrible (dizzy, nauseous, shaky). The things I took at home were a homeopathic insomnia tincture to help the first night or two because of a steroid high, aleve for any joint or muscle pain, and immodium because one of my meds last week caused some loose stools..I have also been using the OPI nail envy and so far so good..I did have some irritation in the vaginal region and thought I was starting to get a little thrush on my tongue so I attributed it to maybe yeast which I read is somewhat common with taxol..I had a liquid probiotic which I gargle with and swallowed last night and even swabbed some down there and this morning feel good as new
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To avoid losing nails is also why I ice my hands and feet during my Taxotere treatments. It can also help prevent neuropathy. My MO says do it if you want, it won't hurt anything - in other word she has seen no evidence - but a survivor friend who did it herself had only one toenail which stopped growing but did not fall off and has seen others who did not do the icing not fare so well. So far I have had no problems with discoloration or anything. Yes it is cold. You ice 1/2 before you start the Taxotere (or Taxol) or other med that has these SE's and remove hands and feet from ice 20 or 30 minutes after the treatment ends.
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Bravo, HapB. It is always a good feeling to give back whether it is with cancer patients or in other areas of life that you are passionate about. Here in Sarasota there are a lot of volunteers I have met along the way. I am just not sure yet whether that is where my path lies when I am done with this. I am already involved in other volunteer work that I love. Perhaps you can partner with an existing organization. Have you checked out this website. They say they have organizations they have vetted. One supposedly offers free housecleaning help. I didn't look through it all though http://www.bostoncancersupport.org/
It is not surprising you are burnt out on this go around. It is my first round and I have 88% survival rate but I sure wish that were a bit higher. I agree about the pink ribbons.
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Hi JuliaZazz, you and I have the same chemo treatment, 4 rounds of TC. My 4th round will be August 17th. And boy, although I'm weaker now, August 17th doesn't come soon enough for me. I just want to face the devil one last time and get on with my life.
I, too, had some bad moments when I was soooo fatigue, feverish on the 5th night of round 3. I told my husband that I hated my life, I want to say NO to round 4, I don't care what he or my MO will say, it's my body blah, blah, blah... But the next day clear head returned, reading all your posts gave me strength and courage to face on.
On the topic of hormonal therapy, this link is an article about Dr Angela Brody who passed away last month. She discovered the Aromatase inhibitor. Her dedication & perseverance helped save many women lives.
Hugs to all,
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Peachy Jeanne,
Thanks for addressing the Taxol and everyone being different. I about lost what marbles I have left anticipating what's to come and reading what some have experienced. I am one week behind you on treatments and I too am heading "home" to the beach between AC and Taxol.
I to have gone dark the past week feeling so sad. It appears to be somewhat normal. It's great to have something however large or small to look forward to as we go thru this. I'm going to plan a mini getaway a month on hopefully what I plan to be my good days. I think that will help boost my spirit. Is anyone doing anything like that?
Prayers and big hugs for a nice weekend
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klt5817 - we are on the same path. My last chemo is a week or so after yours. As usual I will be the last one to leave the infusion center and only the nurses will help me ring the bell, but I will be glad to ring it anyway. Thanks so much for sharing that article on Dr. Brodie. I shared it on my facebook so others can read about her.
HapB. Glad you liked the site I sent. Good to explore what is out there. Maybe you can even find some help for yourself but at least you can get a fuller picture of where the holes in service are.
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Wendeez, I start Taxol 8/11 (Friday). We plan to drive 6 hours to Traverse City, MI for 4 nights, because I have to be back for my big 5-0 birthday chemo on the 18th. Until today, I felt like we should just cancel, since I haven't a clue how I will respond to the first Taxol treatment. I was even contemplating requesting a week delay in my start until the 18th, but then that just means dragging this out even more. I am not even sure the doctor would agree.
Any thoughts on that?
HapB, Regarding the Taxol and premeds, do you not just think they will give me a lot of premeds via infusion? That's what they did on chemo day through the AC, then I just followed up with the med chart at home for the 2 weeks post. I do NOT want to not be told I needed something to keep me ok and this take a bigger hit on me than necessary. For the most part, I have staved off any severe nausea and scary SEs. I guess when I put it all into a bigger perspective, what I have experienced was just frustrating, discouraging, a nuisance... I guess I am fortunate I haven't ended up in the ER or hospital for anything major.
I decided not to run errands today, mainly because I don't want to put makeup and a hat on. I'm treating it like a lazy Saturday--reminiscent of my teenage years.
Regarding the pink ribbons: I, too, so feel like I NEVER had a clue how difficult this particular cancer was, and the complexity of individual treatments based on staging/type. Talking abot saving the tatas or cutesy boob name teams seems a little demeaning to me, having now lived this. While I have not had a MX, I am certainly not the same as before. It's a profound life-changing experience.
I never asked the likely of my recurrence. All, I know is when I first met my MO, she drew a line. She showed that having surgery alone gets us to the 50% marker. Then adding chemo, radiation and hormone therapy gets us very close to getting to that 100% marker, by putting all the tools in place to do our best to get rid of this. I didn't ask the likelihood. I was too blown away by being stage 3A. I thought that was pretty bad. Also the 6/7 lymph nodes. I guess when all my treatment is over, I will expect this will all be behind me except for the HT.
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taxol
THP was easier for me than A/C. Things didn't affect my life in a big way until week 4 (of 12). So I would say you would probably will be okay to plan things in the beginning of THP. Of course, everyone's different, as we all know.
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Kimpossible818- I just completed 10 of 12 taxol/herceptin. Starting with #1, I got benedryl, steroids, pepcid and zofran, all IV pre infusion. I never had an issue with nausea, occasional heartburn/reflux. Bone pain days 4-5, all SE were manageable for me. I didn't have any chemo prior so I can't compare it. I was fortunate to continue pretty normal activities. The only thing now is a little more fatigue.
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HapB, I too am triple positive, as at 3 cm, no lymph nods or anywhere else. I was told by my dr. If I did it in this order, chemo 6x TCPH every 3 weeks, then surgery, then radiation, then herceptin for the rest of the year,that I had a 95% chance of no reaccurance.
I just had #4 on Friday. It's nice to read on everyone else's post that last week was tough. On Monday I was mad because this chemo has been hard on my body and I just wanted some test, or sign that's it's working. Having to wait until # 6 for them to say if it's working at all really pisses me off. I will have to go back to work in early Sept, before # 6 because my job carries our insurance, and I know it will be hard. My daughter is a high school senior and has so much going on, my husband has been wonderful picking up and doing things with her.
My oncologist loves prescriptions and after chemo # 2 and I was so nauseous and had other problems with what he prescribed the first time, well he gave me something g new, I'd say the name but my husband threw it all out already. It was something prescribed for bipolar and schizophrenia but it had an effect of ending nausea with chemo. I took a pill before going to chemo as instructed. When I went in they took blood and as I was walking I told my husband my feet feel like they are walkng a foot behind me. So then as we walked to chemo i was stumbling and my husband told me that I was slurring everything. They got my onc. And he told me that we had to throw away those pills immediately. Then my legs started to get so restless that I couldn't sit still and I kept jumping up to stand up because they felt better that way. I was there for 7 hours because they wanted to watch me. The nurses told me that some of effects would become permanent if I took any more of those pills! I'm glad I felt much better today, Just tired earlier with each session, but last time I had 2 good productive weeks so the bad effects seem to last shorter so that's good. My really only complaint is food tastes awful, texture and tastes all wrong. During the third week about 50% of tastes come back a little but all the rest it's like eating spoonfuls of baking soda. I've lost 15 lbs because I'm living on tomato soup, which actually tastes normal as long as I don't add any crackers.
I love reading everyone else's posts and help with hats and scarves. My hair fell out 95% and have a good rim around the outside still growing. I tell my husband I'll have enough to try a combover soon. I wear baseball caps and bandanas mostly. I have a wig but it feels so fake but everyone says it looks great. I have had people who don't know that I am sick say that I look 10 years younger, guess my hair makes me look older 😂.
Thank you everyone on here for their positive posts, it really helps me 😊0 -
The bright side: For the past two days I've managed to stay away from naps and laying down during the day from fatigue. I actually spent three hours this afternoon grooming one of my dogs. I've been doing more of my art as well. I don't feel quite as fatigued as I did last week. No other side effects either. Well, unless you count no taste and no hair.
The down side: While looking in the mirror yesterday I noticed an whole lot of tiny hairs on my cheeks. Looks like the eyebrows and eyelashes are starting to fall out.
Kim: I had to laugh when you said about hanging on to the couch because I've hanging onto the bed for the past week. Things are turning around though.
Hap: I was told if I did chemo and radiation and tamoxifen then my chances would be reduced to between 15 - 20%. I still think the whole thing is a big guess on their part. I know there's a formula that they use and probably base a lot of it on statistics but really it's anybody's guess as to whether it will come back.
Why did we get it? I don't know. It's not from being stressed or eating the wrong things or doing the wrong things. I know lots of people who's lifestyles are so bad but they don't have cancer. I do know that this has changed me in ways I never imagined. Some good, some not so good. I don't want cancer to define me but it is also a part of me now.
Stay healthy! We're almost there.
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Good Morning to all. This truly is a new week. Yesterday, I woke saying I wasn't going to church. Within minutes I scrambled out of bed and said, "Let's go to church!" I knew I would be late for choir rehearsal before, but I felt a renewed sense of energy. I was fairly weak, but we managed to run errands after. It was truly a turn-around day for me!
Regarding taste. So I get the salty ocean taste for about 48 hours post chemo (gagging, spit cup required). I had some blueberry/acaia? juice my healthy DH had purchased. That taste has stayed on the back of my tongue for 3 days! Well, I will take it over the salt gag. Strange! So, I am definitely drinking more OJ and eating more frozen fruit bars to overcome the bad, salty tastes. I just throw my hands up in the air at all of this oddness.
We have to make a decision by Wed. about going to Traverse City, MI for a few days R&R. I am leaning on doing it. Even Saturday I was thinking it couldn't happen, but I think my DH needs it as much as I do. I haven't even tried on a bathing suit since my LX. I am not sure how that will look, not to mention fit. Honestly, should a bald woman really care at this point?
I applied the OPI Nail Envy Nail Strengthener this morning on my toes. I applied 2 coats per the instructions. Then it says to wait a day and do another coat. It has specific instructions I will follow. I need to do my nails when I have a break in typing today.
LTWJ, Your situation sounded quite scary. I am glad they watched you. Wow, can meds sure affect some people strangely. We have to be careful. I pray you can rest and feel fine enough to work in September. When my first DH went back to teaching on his oral chemo, he just had to crash after school. There wasn't a lot extra he could do but work, sleep and eat. He wanted to do it, and I so admired him for doing so. I have lost 10 lbs. I bet if I feel well and we do travel, I will gain a few back. Eating out every meal will seem to present a bit of a challenge with all my taste quirks, but then I might just go crazy! I will be like Sally in "When Harry Met Sally" ordering everything so precisely -- this on the side, asking what's in it...
Pink, Sounds like things are improving for you! Sorry about the brows/lashes -- mine are still hanging on. Interesting you mentioned hairs on your cheeks. I thought I had a lot more blonde hair like sideburns almost, but I think it was just covered under my original head of hair, and it just didn't fall out. Seemed fuzzier to me. At least it was light in color!!
Have a great Monday, and stay strong and well!
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Hi kimpossible.... gosh I don't know... Maybe you will be someone that Taxol does not bother. I've asked both my Dr. and Nurse and they both wish they could tell me how my body will handle Taxol but they can't... I have 2 weeks between my last AC and Taxol so I'm going home 6 days after my last AC. I guess I would ask it wouldn't hurt. My birthday is the 19th and I am 6 years older :-) so hello my little Leo sister. Please keep me updated... we do still have to live our lives through all of this or we will go crazy.... at least that's how I feel. xoxo Wend
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Had my second dose of taxol only (herceptin and perjeta every 3 weeks) this past Friday...Friday was great due to the steroid high I felt wonderful which I embraced..Saturday I felt good too..Sunday a little foggy feeling like a little off balance but functional..today just a little achy..the only complaint I have is this stomach pain..it seems to start of the 3rd day..immodium helps a little and so does a little alternative medicine but it hurts like cramps and bowel movements..not diarrhea but looser stools..also I noticed on my lab work that between my first and 2nd taxol that my platelet count went from 162 to 329..I called my nurse but no callback yet but wondered why they would have went up so high when since the beginning the highest they have been since the beginning of June was 241..my red blood count and hemocrit are a little lower but Dr never mentioned an infusion yet so I'm not sure if that contributes or what..any ideas?
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hhuey, I don't have any understanding of the numbers. I just look at all my counts and what falls within normal range, which they provide to me. (I, too, have had a few issues after rounds 3 and 4 of A/C with stomach cramping - bad - after a few days constipation. I'm thinking of taking the Senna, though, it isn't required. Maybe I should consider Imodium. I know I need to eat better, but who can?) Sorry, I cannot help. Contact your med team and see if they can explain better. Good luck!
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Kim. The nurse called me back and was extremely friendly and helpful. She assured me my numbers were fine and we went over ways to help with the cramping. She also explained when to worry and when not to which pit my mind at ease. Today is another day and hopefully better then yesterday. I am going to follow the BRAT diet for a few days with added protein for the rest of the week and for upcoming weeks to hopefully avoid any issues.
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hhuey, Glad you got some answers from those who know. My mother keeps reminding me if I am in doubt about any symptom or concern to contact them. That's what they are there for. Of course, I would rather just try and work through some things, but she is right. Better to be safe than sorry.
HapB, Hummus is a good suggestion.
My neighbor made some lasagna she offered to me for lunch, and I obliged. I also just ate a shareable pack of Almond m&ms, though I did not share, so I think I will pack on at least 2 lbs today! Just glad to have a bit of good taste back. I am really craving a Coke freezie, but the only place I know sells them is BK, and that's just a little too far to drive.
Got in my 2.2 walk today. My first walk was 8 days ago and only a mile.
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Hapb
It was the triage nurse that called me back since my doctors nurse was not in the office but she said it was okay..I will ask my MO though again next time because I was a little concerned. Today I ate very light oatmeal for breakfast, some yogurt, soup and toast so nothing crazy and I took a little immodium just in case and have not had any issues. I might walk on the treadmill a little later tonight because I have just been sitting around. It is way to freaking hot outside to do anything.
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Taxol #11 infusion uneventable. Trouble with port for the first time. Blaming the nurse - first stick, no blood return, she tried flushing, instant pain and burning. She removed needle, tried a second time, same thing. Called in another nurse for advice, tried moving it a third time with no luck. Finally got someone else, she got it right away. Delayed things by almost an hour. No one has had trouble accessing my port in the previous 10 infusions. Thinking i will request Jane not be my nurse again. Got a little sleep from midnight to 430, finally got up at 445, read some, watching tv. My port site is sore today, hasnt bothered since I got it back in may.
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BJI, Frustrating. My port is usually sore after infusions. Knocking wood it hasn't bothered me much at all this week. Occasionally it itches around the site, but there is no redness. It always looks bruised to me in the mirror. I have my first Taxol tomorrow. A tad anxious but ready.
We have decided to go to Traverse City, MI on Sunday for 4 days. We need it. I just pray I can feel well. I really want to do SUP on Tuesday or Wednesday, assuming I feel ok. It's something I have done in Hawaii and Mexico and even here at one of our rec lakes. It's exhilarating, but I need stamina to do it.
For those who have done the OPI Nail Envy nail strengthener. Is it ok to put a little OPI polish on top? I don't like natural toenails on me, so I was wondering if this would interfere. I assume not, since the strengthener is on the nail directly.
Have a great day! I will report how Taxol makes me feel.
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KimPossible- yes, I often put color on top of Nail Envy. Still put two coats of NE first, then color.
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Luwusu, Thanks! I put two coats on the first day, then skipped a day and put another. (per instructions) I will get some color on top of that.
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I have completed 4/6 ACTH chemo. The worst SE are nausea and diarrhea which I am working through. This cycle has not been good, very tired and mad because now I have no feeling in my last 3 toes on each foot and my thumbs. Before it was just tingling but now they are numb. I see my onco tomorrow but I'm sure as soon as I tell him, he'll send me home with another prescription. Everything I read says this could be permanent. I feel like I'm being tortured through this chemo and I just want some kind of sign that this is working I need any way. Does anyone's dr do any testing to let you see that this is working at all? I know I need to be positive but this total numbness is freaking me out. Does anyone else have this? Is that what the nail polish is for?0
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no, the nail strengthener seems to help keep nails intact. I put it on my fingernails and kept all my nails in good condition through my treatments. I only used it a couple of times on my toenails, and lost 9 of them. I don't know how common that is but it really happened to me. I am still in the process of watching them grow back - they look awful. I figure by November I may be able to finally get s pedicure.
I am five months out from my last chemo. I still have neuropathy. However it isn't dibilitating at this point. It is infrequent and mild in my fingers. It is more noticeable in my toes, especially when I'm laying flat in bed at night. I wear Snoozie slippers to bed and that helps to keep them warm. I just kick them off in the middle of the night if I need to.
I've found that the s/e's do dissipate as time goes on- it just takes a good amount of time- longer than we want. But it will come. You hang in there
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