Chemo starting October 2017
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Hey ladies - I still have a lot of posts to read. I'm a little behind since Thanksgiving. I was exhausted after that and my boys were both sick, so we were trying to avoid spreading germs. Then I had my third AC on Monday. I was nauseous for the first time during treatment and spent most of the rest of the day in bed binge watching Friends since I couldn't make my brain do much else. Yesterday wasn't quite as bad with the nausea, but I still just sat and read a book and watched tv. Today, I got myself up and around a bit, but got pretty tired after about 35 minutes of shopping.
I do have to say for all you trying wigs, I can't tell you how much it has helped to go to a knowledgable person at a store. I went back to my local place today and got the owner instead of the ditzy girl I got when I bought the wig. The owner sewed my cap a bit to tighten it up, showed me how the tabs have wires in them to help hold to the temple a bit, then tried on a headband with me and then we changed our minds and she sewed in a plastic strip on the back where I can use small strips of adhesive tape. She said she can do the same on the front if I needed her to. I can't tell how much better the wig feels now! I am confident when I go out this weekend it will work great!! And I didn't get charged for any of the sewing...just had to pay for the tape! $20. Nice!
Anyway...I'll keep reading and catch up with everyone. I gather that we are all hitting the cumulative wall of side effects. Not cool, but at least we are getting through it all!!! Hang in there!
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Lisa - Doesn't your treatment center have an ice machine? There's a serious one at mine. I used it to fill a cup with ice chips during my first three AC's to ward off mouth sores and others have used it to fill plastic baggies with ice for their fingers and toes during Taxol. I can't believe you have to bring your own cooler!
Sara - I'm so glad you are getting out there with your horse!! Looks awesome!
Scaligirl - That wig is perfect. I hear you about it being warm though. At my son's birthday party - which was at a gymnastics/parkour place I was dying!! But I've warn it other places and been ok. Today after I got it adjusted and got the wig tape, it felt so much more comfortable that I even wore it the rest of the afternoon. I was even chilly after I took it off and had to put a hat on. Here's hoping the Nutcracker is a cool auditorium!
Eightoutof8 - I hear on the comments that people make. I try to remind myself that they just have no clue and no idea what to say. They are trying to help us "look at the bright side", because they just don't understand. I try not to blame them too much. :-)
You girls are my best sounding board. Thanks for being here!!
~Sara~ "Wonders never cease if we never cease to wonder." -Ziggy
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Hi ladies, so sorry to hear it has been a rough week for the ones doing AC treatments. I was an emotional wreck after my diagnoses and surgery. My doctor prescribed Lexapro for depression and anxiety and I feel so much better. I don't cry hourly these days. I also feel very lucky to be on Taxol. This week I will have my 7th treatment. I am getting weekly doses for 12 weeks before starting Herception. I hope that all you ladies starting taxol will have it easier than your other treatments. Just for information. My first treatment was about 5 hours. ( accessing my port, taking labs and then the 4 infusions). They gave me steroids, benadryl ( I had them cut the benadryl in half after the 2nd treatment cause I couldn't handle the affects during the infusion,), then pepcid and the Taxol. I have my treatments every Thursday, so in the beginning, Friday I was ok, a little tired on Saturday and Sunday. Then after about the 5th treatment, as the treatments are cumulative, I am pretty exhausted most days and now I get out of breath from being anemic. But as long as I try to work, get outside and keep moving, I'm ok. I tell myself, just go with it! Only other side effects I've had other than losing my hair, are very dry skin, dry scalp, runny nose, nose bleeds, and occasional body pain. No nausea and food tastes like it always has. Hope this is encouraging for you ladies.
Praying everyone has a much better week.
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Lisa- thank you for sharing your thoughts on being TN. Positive energy is always uplifting. So thank you! I think most of us already know the severity of our diagnosis as compared to others simply because our treatment options aren't as varied or as many. However, we do have options (and they are doing so much research) and I'm thankful for that.
Please know, I am a realist, so I quickly educated myself on all things BC and especially my type. I'm a realist however, not a fatalist. My MO said being positive in heart and inmind makes all the difference. My prognosis is good but the treatment is hard. That's how it is for many of us. To get to the other side we need to weather many storms and dark nights. I can say for me, staying away from the constant doom and gloom that some spout out (even if well meaning) is good for mymental health.
Anyway, my 2 cents... keeping the faith as John Lodge (the bassist for my fav band) often says. Encouraging everyone else to do the same; keep the faith!<3
Thanks again!
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Agatha, yes my center has an ice machine. I didn't realize I needed ice until after I took out the second round of ice packs/peas, but I'll definitely take advantage of it next time to keep my peas frozen.
2brandy, thanks for sharing your experience with Taxol. It's very similar to what my NP told me was a common experience with Taxol. Not enthused about the fatigue or continued baldness (which may not happen, acc to the ladies on the Hair Hair Hair thread), but being able to eat and drink and having it taste normal is a godsend. And also I'm so very blessed that my work is allowing me to work as much or as little as I want, so if I'm feeling fatigued, I'll stay home. I've worked non-stop since I was 16 years old and just have to get over the guilt of not working for a few months.
eightoutof, I believe that you have a great attitude. I agree that our prognosis is good (I'd actually say very good) but the treatment is a bugger.
Interesting note: Cancer (all cancers) and heart disease are about tied for being the #1 cause for death among all women in the US, but if you break the cancers down, almost double the number of women die of heart disease than die of breast cancer.
Less than a week before I was diagnosed with cancer, I was diagnosed with high BP and put on not one, but two, HBP medicines. After the DX, I kinda shrugged and thought to myself, "Sister, you need to lose weight!" Yet, my cancer diagnosis gave me TONS more stress. Isn't that crazy? I mean, when I learned that I had HBP, did I IMMEDIATELY change my diet? Did I force myself to get out and exercise every day? Did I ponder my imminent death? Did I update my will? Did I get online and research heart disease until I made myself neurotic? Did I join a support group for people who were "not yet diagnosed but scared"? Nope.
But when I was diagnosed with cancer, I was shattered. And from that day forward, I changed my lifestyle for the better. I stopped drinking soda cold turkey. I changed my diet. I exercised more. I read up on my disease until I made myself crazy. So why was BC so much more daunting than the prospect of having heart disease? Yes, the risk of recurrence is nothing to dismiss lightly, but mammograms have ensured that cancer isn't as sneaky as heart disease. I mean, how many people do we know that literally dropped dead of a heart attach or stroke. I don't know ONE person who dropped dead of cancer. So, logically the prospect of having heart disease SHOULD have been at least as scary to me as having breast cancer, which is one of the most survivable cancers around.
So why did I fear cancer so much more? I actually think that the TREATMENT itself, the harshness of it, was a huge contributing factor. How many of us thought, "Okay, I can deal with this, but please don't make me do the chemo that makes me lose my hair!" I know I did. And, yet, here we all are, going through the chemo that makes us lose our hair and our appetite...and we're all starting to adapt to it! We're learning to laugh again. We're realizing that even the crappy nausea and fatigue doesn't last forever. And as for us TN folks: We actually have a huge advantage over other BC patients in that in about a year, we'll all be complete with our treatment plan in less than a year. And then we can get on with our lives, armed with really great survival rates, even if they're not as great as the non-TN folks.
I just hope that in a year, I can ditch my HBP medicine, too!
PS. Sorry for the ramblings tonight. Steroids make me a little loopy!
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Lisa. I loved your post
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agatha, it's a pity your friend was focused on her holiday plans and not you! But I do hope youre able to come up with ideas for a holiday when you do have a break in tmt or finish it. Something to look forward to.
Eight out of, omg it must be easier being bald, insensitive and ignorant. It's really hard but we get up every day and deal with it even though we hate it, that takes guts. All power to us.
Re the stats and our survival rates, at the end of the day we don't know if we'll fall into the 85% alive in 5 years or the 15% who aren't. I know we'll live with the anxiety of every scan and check up. But once we get through the tmt and side effects we'll be able to catch up on living, hopefully with a new appreciation of making every day count
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Baldy is just over here battleing breast cancer. This is what happens when you hit a wrong button on your phone and find something new.
I love your post and thought process Lisa! Chronic conditIons like high blood pressure and diabetes, most people don't bat a eye at. I think the problem with BC is we all get lumped together and treatment is so different for each of us. I find people compare me to someone they know who had DCIS and a lumpectomy then done. Chemo is such a different ball game. But through it all I am grateful for it. Not only to shrink my tumor but attack other cancer cells that could be floating around my body.
I was just telling my husband this morning, I need to find something. A support group, a exercise/yoga group, nutrition group...with other cancer survivors..something to be working on me during this process.
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I read a blog called “Fighting Cancer Everyday” It’s a survivor writing blah, blah, blah. The one thing I took away from her story is that WE, not just Dr’s can fight cancr everyday. I thought I was doing nothing, but my social worker pointed out that I am doing A LOT. He encouraged me to write down my commitments to fighting cancer and what I’m doing each day. It’s the last thing I do before bed. I even wrote a plan of what I do when I get a new symptom (so I don’t lose my marblesdusgnjse myself). I must say, it’s helping. Those is vulnerable but here are a few pages.....oh. And I like fancy pens
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And here’s what keeping track everyday looks like. I shopped for my book and my pens. It was something to do one day and kind of a treat. Anything to make the journey through treatment more bearable 💕
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Lisa and Sara - You girls are so positive and awesome. I love your outlook and perspective. Lisa - I am the same way. I am on two, sometimes three, high BP meds. Did I get my act together...nope. My mom, uncle, and grandma all died of heart disease. Was that enough?? Nope. Why then does cancer get out big fear? Because it's so much more "visible"? It's a little weird.
Feeling better so far today. Let's hope it keeps up!
Good luck to everyone else today!
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Lisa, your post! Just thank you. Thank you. Thank you!
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Petey and JadeShiva, thank you for the kind words. I hope I can give back a fraction of what I receive back from you in inspiration and support.
Sara, I love your journal. I have to admit that I'm feeling kind of crappy today because I only got about 3 hours of sleep last night thanks to the steroids given prior to Taxol. I got about an hour nap in today, but realized that it's futile to try and make up for lost time at 4:20pm. So, armed with the inspiration from your journal where you are putting your feet on the ground everyday, I'm going to put on my shoes and take a half hour walk. Then I'm going to make myself a healthy green salad for dinner and hit the sheets at 8pm. As you say, we can all do something every day to improve our health. Rather than watch another hour of useless tv, I'm going to get my heart pumping.
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Met with the BS today. Going to be put on schedule for surgery mid April time frame. Double MX with a possible sentinel node biopsy and possible axillary dissection. I assume the checking the nodes is standard even if MRI is not showing spread to nodes. I know my first MRI said nodes mildly prominent and one was 5mm. But they keep telling me they don't think it's spread to my nodes. I will have another MRI in March. Pray chemo killed any cancer!!
Then today a diagnosis of abnomal imagine finding was added to my chart?! What they heck? Where did that come from? Didn't have a imaging today. I studied medical coding, so hoping that was just put in to justify my MRI in March.
Next Tuesday starts Taxol. I admit nervous to switch drugs but the last two AC's have been hard on me. That cumulative effect. I still struggle with fatigue, constipation/hemorrhoids. I have to remember to miralax every day!
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Hello everyone,
I was diagnosed with reoccurrence to bone in august...I am once again starting chemo...which began November 17...I had a very low WBC and ended in hospital this week with neutropenia fever...my question is...I have next infusion on Dec 8th of TCH and will start neurogen (zarxio) bilsimilar..it is new since 2015...has any one used this and if so was it effective and and s/e noted? Thank you ahead of time sisters,
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Jennifer, I'm getting a sentinel node biopsy even though there are no indications of cancer in my nodes, either from the MRI or the ultrasound. My MO informed me I'd be getting it before he even got the results of my MRI, so I think it's pretty standard to ensure that they've gotten all the cancer cells. If they find evidence in the sentinel node + 1 or 2, they'll go back in and remove more; otherwise, they'll just remove the sentinel plus one or two and biopsy those.
I'd send them an email and ask about the "abnormal finding" notation. You are probably correct that they are just playing insurance games but they need to realize that we have access to all this information and they stress us out when they put things like that in our file.
motherofman, welcome to the Oct chemo thread. I'm so very sorry about the recurrence and the hospitalization. I doubt you'll find much information in this thread because most of us are first timers and I don't believe zarxio is used as a chemo against primary cancers. In any event, it doesn't ring a bell with me at all, so sorry I can't give you more information. You might find more and better information on one of the metastatic threads. Wishing you the very best of luck and a return to health.
All, I had my echo today. No results yet, but hoping no damage done to the old ticker from A/C. I'm also overdue re getting results from my genetic testing. I'll wait til Monday to call but they said 2-3 weeks and it's already over 3 weeks.
I'm Day #3 after Taxol #1 of 12. Although I was up all night on Wednesday, and pretty much a zombie yesterday, I was able to sleep 11 hours last night and feel almost 100% today. I'm eating normal and able to exercise. So far so so good for Taxol. The only SEs from the chemo (as opposed to the steroid) is random body pains and a bloody nose. I'm combating the latter with some nasal spray and Puffs Plus with lotion that I highly recommend. Don't trust anything else around your nose when you have a runny nose. And I'm not just saying that because the company I work for makes it.
I'm headed to our lake house. Have a great weekend all!
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Hi, everyone! I have some great news to report. I met with my surgeon and oncologist today. They both gave me physical exams and agree my tumor has shrunk from approx. 8 cm x 6cm x 3 cm down to approx. 2 cm x 1 cm x 1.5 cm. And I still have Taxol to shrink it more. (Won't have mammogram and MRI until Taxol is finished.) This means that I can get the lumpectomy that I wanted, no need for a mastectomy. I can't tell you how much this means to me. I had been so weirdly weepy this week - this good news today has stopped that in its tracks. We worked out the calendar and it seems like after the remaining Taxol, surgery, radiation, and Xeloda (more chemo, but in pill form at least) I'll finish up on my next birthday in early November next year. I may join a clinical trial for androgen receptor positive cancer after that, but the trial may be finished by then.
Had my first of 4 DD Taxol treatment today. It was almost 5 hours in all, but very uneventful. None of the weird little feelings I got during the A/C infusions. I iced my hands and feet and no problem keeping them cold for that long. Tomorrow I get a Neulasta shot. (Will get them after first 3 Taxols.) Hope the bone pain isn't too bad. My oncologist explained that it's the combo of Neulasta with Taxol that can cause the bad bone pain, not the Taxol. Neulasta is synergistic with Taxol in a way it isn't with A/C - possibly resulting in worse pain in some people. Fingers crossed I don't get walloped with it. I bet making sure I get out and stretch my legs will help.
Joyseeker Sara - Thank you so much for sharing your journal. Your positivity is inspiring. (LisaRX - you, too!) Plus, I love fun pens, too!
Jennifer - I am ABSOLUTELY praying that chemo killed your cancer. I hope you get an easy answer to the random info on your portal. They really should just slide stuff in like that since the have to know we read it!
LisaRx - So glad you got that sleep in. I had my first of 4 Taxols today and I am wide awake at 10:30pm - can't see myself falling asleep anytime soon.
Hope everyone has a great weekend!
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Agatha and Lisa, thank you so much for the updates on your first Taxol and for the good news that it is not so bad too. My first Taxol is Tues, same as Jennifer. I am concerned about the possibility of them giving me Benedryl, because I have been driving myself to Chemo, and not sure about my ability to drive afterward. Did you feel like driving after the first treatment?
Thank you everyone for your posts and information! Have a great weekend.
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Agatha, wonderful news on the shrinkage. That's really impressive! So happy that you now qualify for a lumpectomy.
Hiker, I would have had no issues driving. However, I was told from the nurse (not my MO) that I should have a driver for the first round of any new medication. I doubt that they'd have stopped me from driving. I don't think that you can forego Benadryl because so many people are allergic to it, though.
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Good Morning and thank you for being here! As I read the thread I'm struck by how similar and yet different our treatment plans are. I know there are many variables and it's interesting.
I had my last AC on Monday and Wednesday was the worst day ever! Then every day after a little bit better. Gonna kick this and getting that last one done felt like a milestone. My Taxol will be once a week, is that true for most of us? I was told no Neulasta shot with the Taxol. AgathaAC, I hope you find relief with Claritin and congrats on the good news. I'm going out to get some Puffs with lotion today!
I'm still waiting to get a really good night's sleep and with all the meds I know we're all struggling with that. My husband just hit the sleep deprivation wall yesterday, I must remember to give him some reciprocal care! LisaRXCinncinnati it's like you say, Cancer, it scares the sh!t out of you (my words). He has been pretty distraught but keeping it together for me.
I was always really active and was trying to get outside and back to some higher level of activity since all of this, the fresh air really gives a boost and Bonus if the sun is shining, but I ended up with an infection in one of my toenails and was told to lay off some. I'm curious if any others ended up with an infection? I'm on antibiotics, more meds! A little worried about this coming on Before the Taxol as I think I've read it's even harder on our nails? Is this why you ice? I don't know about the ice, please share.
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The wig I first got from American cancer society before I started chemo. I never liked it but wigs were such a foreign idea. I realized, it's not bad but the color is too light. It's actually more comfortable than the expensive wig I bought.So throw a hat on. I feel normal in public today!
I am going to call the wig shop this week and get some help styling and maybe cut some bangs into my other wig. I have a holiday party to go to
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Hi, Trees100. I'm not on the 12x weekly Taxol schedule. I get 4 infusions over 6 weeks so I get slammed with more medication each infusion (it's about 4 hours of Taxol drip). That's why the Neulasta for lucky me. I think one other Taxol person on here is not 12x weekly, maybe Jennifer?
Ice, you ask? I had some feet/nail problems on A/C - blisters, tenderness, toenail darkening, toenail lifting off nailbed. My fingernails weren't so bad - my normal white half moons suddenly got some horizontal white striping. Therefore I started icing my last A/C session. If you search back on this thread to Nov. 17 I posted some photos of my hands and feet on ice during the infusion. I plan to keep doing it on Taxol. The way it works at my center is that the chemo nurse brings in 4 ice bags for me to slip into about 15 minutes before the Taxol drip starts. The bags have 2 layers of plastic so I'm not touching any ice directly. I still suggest wearing thin cotton gloves and socks for comfort (might not be so necessary for shorter infusions but I was happy to have them as I was a couple hours in.)
Good luck with Taxol everyone who is starting next week!!
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Jennifer - that wig is cute, too. I love the ends! It' looks great with the hat. Figures that it's more comfy than the expensive one
Is it synthetic? Here's a hint I learned for synthetic wigs...you may have seen this. There's a $10 tool - like a powder puff on a wand, that you bop on a synthetic wig to take the shine down a little to make it look more natural. Here's a link to it on Wigs.com Jon Reneau Wig Wand
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Agatha thanks for the tip. If I can get the shine down, it may not look so bright.
And yes I am the other DD taxol but mine is every 3 weeks. I have talked to a couple other women who went through chemo at the same hospital over the years and that is how they do it here.
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Agatha, that's fantastic news, after all your side effects, it's really really working. And great news on the surgery aspect too!
Jennifer, that wig looks fab. You mentioned the other wig feels scratchy do you wear a liner? Or is it the hair on your shoulders that scratch. Maybe washing it might help?
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Dose dense taxol here too. I get it every 2 weeks, so also get neulasta shots. I've had them aftee every dose so far. Bone pain is worse since starting taxol though. I'm due in for 3rd dose this Wed.
I haven't had nail infection, though last couple of days one of my finger nails feels v tender and sore. I don't ice, but need to get better at putting on nail oil I think.
I did have a wound infection after first dose of AC. It delayed by second dose by 3 full weeks, but I had iv antibiotics and needed a wound debridement. Hopefully your nail infection will clear up quickly Agatha. It should do with antibiotics. I think infections are more common than we realise.
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Hi friends. I have my fist infusion with neulasta on the 28th of December. I know we are all different but I'm wondering the timeline on the bone pain? I would like to spend my birthday, January 4th, at Whitefish at our cabin. I'm hesitant to plan. Yet kind of need to if we are going to go. How's many days after your shots did you experience bone pain? And how long did it last?
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Hi, Joyseeker. When I was on AC and getting Neulasta shots the bone aches were not that bad, but I did feel them. I'd say it started 24 hours after the shot and lasted 3-4 days. I felt tired more than achey, but with some short episodes of discomfort in my jaw and thigh bones, maybe my hip. I noticed it more as the treatments went on, so hopefully your first Neulasta won't be so bad.
However, my MO explained to me that now that I'm on Taxol with Neulasta I should expect bone pain to get worse. Neulasta synergies with Taxol in a way it doesn't with A/C so the bone pain is very often more severe. Are you getting it with your Fluorouracil? You could ask your MO if Neulasta synergizes with that in a way that increases the risk of bone pain.
I'm almost 24 hours out from my Neulasta shot after Taxol and no pain yet, but I'll keep you posted if you like.
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Sara - Make sure to take Claritin staring at least a day before. The bone pain hasn't been bad at all for me. I've been taking Clairtin everyday though, so hopefully that helps. :-) I wouldn't postpone vacation plans because of it!
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Lisa, thank you for the feedback on driving after Taxol, I will try hard to find someone to go with me. Agatha, congrats on the shrinking tumor!! Jennifer, your wig looks cute, I like it a lot.
All others, good luck on your next treatments, and the information concerning SE's is really helpful!!
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