Starting chemo April 2019
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Yeah, Marie, chemo's giving me muscle fatigue. I had it last time too, just not this severe this quickly. But I'm out and running around whether I want to be or not. My nuelasta on pro leaked so I had to drop it off at the cancer center and will have to go back 10 days after my last spa day for blood panels because I'm not sure I didn't get at least some of the drug before the gizmo started leaking. Also had to be at the hospital for my son to start rabies vac series. Neighbor's dog bit him last weekend. ER told us then that animal control would call to let us know if he needed the vacinne and if they didn't by Friday, to call them because you've only got a one week window for the vacinne. No call so I called them -- offices closed. And the story just gets more aggravaing from there. And that was just my morning.
Basically, today is nonrecoverable. Today is evil and I wish it every manner of ill possible...and few that aren't possible, LOL. I am having ice cream for dinner and nobody can stop me.
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SaltPepper, No Chemo until the infection is addressed.
MsMarie, I asked whether it may be related to my transfusion, they told me no, in fact, they do not believe the port is infected because my port "looks good". I told me the week after the transfusion, there was a small sharp pinches but not exactly itchy, it went on for a week, then they cancelled my first taxol because of 99 degree temperature. They never investigated.
As it stands now, after I was discharged, I will likely be staying in a skilled nursing facility for the antibiotic. Called me "lucky" (turned 65 in Nov last year) I am covered by medicare, it turned out medicare does not cover inhome antibiotic. If I were to choose inhome antibiotic, I will have to pay about $400 per week (medicine and the work involved ). The weekly nurse visit will be covered. If I were to stay in a skilled nursing facility, then it will be free. Today, the infection doctor said I may need only 2 weeks of IV antibiotic every 6 hours after I was discharged. They will use the port to give me the antibiotic and do a blood cultures after the 2 week. She suspected that I was infected due to UTI rather than the port.
robinredbreast, I also need to wait until both blood cultures come back to be negative. So far, I have taken two sets of blood cultures. First during admission, where they identified the bacteria. The second set was taken yesterday, so far it is negative and the doctor said that normally it should come back within 24 hours, I will need to wait at least 3 days, but I suspect we need 5 days. THANK YOU for the suggestion of probiotic, I brought up to the hospitalist (the hospital doctor who in charge of the coordination), she told me there are pros and cons as I am a cancer patient therefore, the "good bacteria" may turn bad, therefore I may be better off of getting it through food such as yogurt. Then I asked her about C-diff, she immedately told me she would look into it.
During my second AC, I also have my nuelasta on pro leaked, but as I live so close to the infusion center, I chose to go to get the injection for AC#2, 3, and 4. Now I am second guessing myself whether the injection is effective. One week after my AC#4, my WBC count was 0.38. I asked the hospitalist why no one looked it as a red flag. She said there was nothing my oncologist could have done because nuelasta could not be given more than once in a 2 week period.
Never in my life I want to have taxol that bad LOL.
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Fac03 - You have been through so much on the crazy journey. You are one strong lady!
SaltyPepper - Happy to hear the surgery went well. I am almost five months out of surgery and I still get shocked at my appearance...no hair, scar on breast, scar across my abdomen. Who is this person? It really makes me feel for younger women. At my age (53) my concern is looking good in clothes and a one piece bathing suit...the naked part is a bit less of a concern.
Robin - glad to see you post. I tend to look ten steps ahead of where I am at so I am already dreading the mammograms and follow up testing that will come. My MO assures me that there will be days when I no longer think about breast cancer but at this point I am not sure I believe him.
Princess - sorry to hear about your son and the day in general. Ice cream for dinner sounds like a great idea.
As for hair, I have peach fuzz too but I don't feel like it has grown much at all. I have had to shave my legs a few times so I know something is growing, just wish it was on my head!! My eyebrows have thinned a bit and my eyelashes too. Really hope they hang in there till the end. My last taxol is on Tuesday and then Thursday I have my radiology appointment to get set up for rads. At a previous appointment the radiologist said it would start about three weeks after chemo is done.
Have a great weekend everyone!
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Well my surgeon was no help at all about the burning. She told me to contact my plastics people. I asked about Lyrica etc. she said she thought it was likely the expanders causing the pain in my chest, arm pits arms and back...
NOPE! I said it is more likely the nerves and that I had looked into it and asked the "experts" other BC patients... She just wanted to write narcotics instead and said to follow up with plastics again. SO frustrating. Said she wasn't worried about the "black" areas on the incisions either, which is fine.
Also got my path back. mixed news. No nodes (yay), close margins, now classified as HER2+ so now more chemo.My hair just started to grow in a little. Now Taxol and Herceptin. NOT happy. Radiation is still being debated. My case will go to tumor board because my mass was 13cm (yes really) but only 5% was Invasive, the rest DCIS. Thanks for the moral support. I hate healthcare and I am actually a part of it and teaching others to go into it.... Feels wrong some days.0 -
Hi Everyone-
I was reading backwards trying to see if anyone in our group is Her2+?
Looking to hear more about Herceptin experiences. Guess I will search the other boards.
Karen0 -
Salty pepper - I have two co-workers who did herceptin. They said there were no side effects and if I remember right it was a quick infusion. They are both about 15 years out from diagnosis! Hope you find more info on other boards too.
My last taxol was yesterday! I have my CT simulation on Friday for radiation but don't think I start for a couple weeks. My plan is radiation and on August 6th I will have my first Zolodex injection that will shut down my ovaries. I am going to be on that for about two years and then they will stop to see if I have naturally gone into menapause. MO does not anticipate any more side effects of menapause than I already have had by being thrown into it by chemo. I will have that injection monthly.
After radiation is done I will be taking Arimidex to shut down any other estrogen that is being created elsewhere. A new med he hit me with yesterday was Zoledronic acid. He is going to start me on that but it will be in a few months. I had never heard of this one but it is used to treat osteoperosis and will counter act the bone weakening effects of Arimidex and has been shown to reduce the chance of recurrence of early stage hormone positive breast cancer by an additional 2%. I have not had the chance to research that my self but will. I have to get clearance from my dentist for this too because if you have to have any extractions, etc it will not heal. Mouth is the only place where healing is affected. Also this med can cause something called osteoncrosis of the jaw. My dentist has been after me for a few years to take out a tooth that has cracks so I guess this will make me have it done....sigh.
Sorry this was so long but wanted to share about the Zoledronic acid as I have never heard of it but others may have. I hate taking medications because of side effects but in this situation I want to do whatever prevents this crap from returning!
Continued strength to all!
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congrats Bam on finishing chemo! 🎉You are much further along with your knowledge of radiation than I am. But I have a month of chemo left. Thanks for mentioning the zolodrenic acid, I haven't heard of it but I'll ask about it.
Taxol #8 for me tomorrow. Is there anyone left here still in chemo? I feel so lonely😶
Hugs to all! MM
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Hi MsMarie!! You are not alone. I had Taxol number 9 today! I am really starting to feel the fatigue and brain fog now. No neuropathy but two of my fingernails on each hand are lifting up and yucky looking
my eyelashes are also starting to really thin out. I am using a lot of mascara on what I have left! This last week has been a bad week for me mentally because I am just over it! I was cranky and a little depressed. But the nurses were great today and made me feel better 😊. I don’t post a lot but try to keep up and read everyone’s updates. They always help and I don’t feel so alone in all this.
I hope everyone has a relaxing weekend! Take of yourselves 🤗
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Ms. Marie and Sparklegirl - I know it is easy for me to say but you are getting so close to the end of this marathon! I still check here everyday so keep posting.
I am thankful to be done with chemo...this last taxol has taken it's toll. I am more tired than I realize. Yesterday I met a friend downtown for lunch for "Food Truck Thursday". It was really hot and while we were waiting in line I started to get dizzy so I went to sit in the shade. I was sitting on a curb in the park not near the street and I ended up passing out and fell off the curb. I came to with two nice gentlemen asking me if I was okay. They got me water and security who were also the kindest guys. I had a little cut on my forehead and was bleeding. My friend was able to get my food and after eating and drinking two more bottles of water I felt better. I was in tears a bit from embarassment and from just being sick and tired of this ride. I have felt down and overwhelmed since my last chemo and appointment with my MO. Overwhelmed with the thought of everyday radiation, meds forever, having to get this tooth pulled so I can start that Zoledronic Acid....just over it!
I have to go meet with the radiologist today and I hope I don't break down!
Praying for strength for us all!
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bam320, how scary, glad you had many kind people around to help. I feel the same: extremely tired and worried about stamina, flew today and had trouble standing in line for an hour through security, feeling emotionally exhausted. I am taking a weekend trip with my best friend so I know I can relax, wear scarves and no wigs,etc. but I feel down too. So helpful to know we are going through this together and people here understand.
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bam320, Wow, time really flies. You started this thread and now you have finished Taxol. Congrats. The "Food Truck" incident was scary. Glad there were nice people around and you are okay. Hope that it is going to be better going forward.
I still have not started Taxol. I checked into rehab for my 2 weeks IV antibiotic (4 times a day). I had considered doing outpatient in the infusion center, getting IV antibiotic once a day going through the port, but I am scared on having the port accessed every day. On the other hand, my oncologist told me if I were to do outpatient, she would start my taxol along with the antibiotic treatment, But now I am second guessing myself as it will push my taxol back another 3 weeks (6 weeks from my initial schedule). I am not sure how it will do to my BC as I begin to feel my armpit area (the lymph nodes ) is hurting.
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Wow Bam, how scary! The heat seems to make how we feel worse. I’m with you, so over this BC train.
Hope your radiation appt went good today. I’ve had 12 treatments and it’s going good. Make sure you start lotion now before you start and 3-4 times a day. I’m still fatigued, not sure if it’s from the chemo still (1 month PFC) or the radiation. Oh and stay hydrated
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Congrats, bam, on finishing and woo, the food truck thing sounds scary!
I'm still in, with one more to go on the 24th. Blood panels after my leaky nuelasta arm gizmo were so bad I didn't even know that level of bad was possible. Had to go back for a shot (zarxio? something like that). I'm neutripenic so I'm monitoring my temp, avoiding crowds, no fresh fruit or veggies. Follow-up blood panel tomorrow to see if I need another shot.
I have no energy. None. Even taking a shower is exhuasting. I don't know how I'm going to get through this last one. I will. I just don't know how.
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Farfalla6 - I hope you had a great trip and were able to relax but have some fun too. It is terrible to have to worry if we are capable of something as simple as standing in line for a long time. I went shopping the other day and the line was long and I really was worried about being able to do it. Probably a little PTSD from my passing out
DebraC - Glad to hear you are so far along with radiation and that things are going well. My first treatment will be on July 31st. I had the set up appointment last week. I felt like I had been abducted by aliens and they were doing medical experiments on me. Arms above head, naked from waist up, chin strap attached to the table holding me down. I go to a teaching hospital and the nurse had to ask if it was okay for some physics students to observe....ah, NO! Thanks for the lotion advice too.
Fac03 - I am so sorry that you are having such a rough time. Have you decided if you are starting Taxol while on the antibiotic? So hard to make a decision when you are getting conflicting options from the doctors! Once you start taxol I hope that you find it so much better than a/c.
Princess - one more to go!! I continue to be amazed by your positive attitude through this all especially since this is your second time around....amazing! Best of luck with that last one!
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I had a GREAT weekend in Montreal with my friend. My energy did come back and we walked 5-7 miles all three days, ate well, laughed and had fun. My worst day was last friday, but feeling stronger and so happy not to have to have chemo again this thursday, and that my strength can continue to improve. Having said that, I have the radiation set up appointment today, so we'll see how that goes. But it was great that for the past weekend, I really could get past the cancer, not forget it of course, but thoroughly appreciate the days. But I do have a fantastic best friend, since age 11!
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MsMarie- You are not alone! I still have 12 weeks of taxol and herceptin and then a year of herceptin alone. Sooooo- I will be the last one likely!
Bam- I am so sorry that you had that happen. I cannot stand the heat right now. I feel like I will combust and have zero energy in minutes. Please be careful! I fully understand the done and over it, I hit a big wall when I realized I have another year ahead of me. ANOTHER YEAR of treatment, appointments etc. I laid in bed a full day just to wallow in my own self-pity. It is ok to feel that way- we are not all "Strong Warriors" BS every day. Sometimes it is just mere survival and that is enough.
Princess- You will find a way. You have done it before and you will make it again. Let your family do every single thing else. Your only job is to eat, sleep and breathe! I will be sending positive vibes your way.
Farfalla- that trip sounds like a perfect break- so happy you enjoyed it and felt well enough to do what you wanted to do.
Fac- your attitude through all of this is inspiring. Your casually saying "oh i am in rehab" as if it is nothing is nothing short of miraculous in my opinion.
DebC and Bam- I will be watching how things go with radiation, I will start once I am past the 12 Taxol.
I think that I caught up? This board format makes it so hard to keep everything straight and not miss anyone.
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Hey All you wonderful people. I stopped coming on site for a bit but the last few days I have been reading everyone's posts but not posting anything. I just don't know why I get anxious about leaving someone out ..The good, the hard, happy, Sad and mad.. all of it.
I see as usual, everyone here makes the best of what gets thrown at you. Thank you all.
I have 4 treatments of taxol left of 12. Lowered the dose a bit on 5th treatment for neuropathy. I trip for blood transfusion. Low wbc alot so not alot of public.. the nurses are like.. nope. Hehe
Deip flap (spelling) surgery is hopefully in October so saybye to whopping cushions ..
Lots of hug everyone.. big ones!
Dorene
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Twelve, neuropathy is rearing its ugly head for me too. I had it last time at the end, but was minor tingling in my toes that started fading 2-3 months after I finished chemo, no big deal. For some reason, this time it's itching as well as toe-twitching and the itch is maddening, LOL. So I assume they'll scale back my final dose.
Just realized Mueller will be testifying on my last spa day so I am now fervently praying I don't end up in a pod with a shared TV because if I have to watch that, Imma lose it. Spectacularly. For my last spa day, all I want is a quiet place to diamond paint and read. If the TV is on at all, tune it to the murder channel. Homicidal white noise. Works for me! I don't go to my cancer center to argue politics, right? I just want to make it through the day, man. That's all. On my spa day before this, I got my own room and it was lovely, absolutely lovely. Other than suspecting they reserve the rooms for inmates and patients who are in bad shape, that is. Actually, I wasn't in bad shape that day. This one, I am. To get my own room, I am prepared to look as pathetic as possible and hey, I'm bringing the nurses a brownie assortment from the bakery. Please, please, please let that be enough to save me from political purgatory... *fingers crossed*
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Hi all! I will have #11 of 12 taxol this week....almost to the finish line....of this part! I have been icing hands and feet but definitely much more consistent on my feet and I have had no neuropathy in my feet but some numbing in my hands the first couple of days after treatment and then it fades away. I need my hands to turn pages and click to the next screen
So they do not stay cold. Princess - I don't think I would like having a tv in the treatment room that I had no choice of what was on. Or if you prefer quiet! My center has partitioned areas but you can still see people across from you in some areas. Most people do their own thing and if they are watching something or listening to a book they use headphones. And I would definitely not want to deal with politics! I will be hoping you are saved from "political purgatory!! I plan to bring something for the nurses as well. A brownie assortment sounds great!
For those just starting taxol, I have found the side effects to be much more manageable than AC. Little to no nausea and less down time. I have been working throughout treatment but with taxol I have not missed any days. I usually go in at 10am instead of 9am as mornings are the hardest to get moving. Just achy and tired in the mornings. I have my treatments on Thursday and usually do not do much on Saturday and Sunday. I find if I do too much on Saturday I feel worse on Sunday. 12 weeks sounds like a long time but it has actually gone by pretty quickly! I hope it does for everyone!!
Happy Monday and hope everyone has a good week!!
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I had my first taxol last Tuesday and my second yesterday. However, it was not without a fight.
The nurse manager at the rehab center initially told me if I ever went for my chemo, she would discharge me. She even went so far to tell my oncologist's office. After the attending doctor told me if I needed treatment, I could have treatment. I sent an email to her manager and copied the head of the facility. Problem solved.
I did not feel any SE after the first taxol, but I drank a lot of water. I finished my second taxol yesterday, still 10 more to go.
Congrats to all of you who have finished or near the finish line. You give me hope that the 10 weeks will pass soon. I will be leaving the rehab tomorrow.and will see my infectious doctor in a week for another blood test, hopefully it will show that the infection is gone.
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Failed my blood panel so no finishing chemo today. Stupid platelets. I go back in Monday to repeat the blood panel and if my numbers are up, I'll do it then.
Also, onco doesn't think my itching hands and feet is neuropathy. She thinks its an autoimmune thing hairing off. Prescribed me something she says is better than benadryl. Weirdness.
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Hi Everyone!
Since I am finished with both radiation and chemo, I have started on the aromatase inhibitor (AI) journey. My MO is starting me slow since I have a hypersensitivity to medications. So I am taking Letrozole (Femara), every 3 days for first week (started yesterday), then every other day for second week, then daily for the remaining 5 years.
Naturally I am concerned with the SE's of this AI (any AI for that matter). Does anyone else have experience yet with AI's that would be willing to offer advice?
Princess - best of luck Monday!
Hope everyone's energy level is staying high.
I wish to express that I am so thankful for the opportunity to share experiences with you all. It really means a lot to know that I am not alone.
Best always,
Ro
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Hey there,
I am impressed with all of you 12 taxol warriors. It sounds like everyone is getting close to wrapping that part up!
Saltypepper - A year of herceptin does sound completely overwhelming and you have every right to have a pity party for yourself. When my two co-workers who are both 15 + years past their 12 taxols and year of herceptin talk about their experiences they are sketchy on some of the details of their breast cancer. I cannot imagine not remembering everything about this terrible journey but we will also get to the point where this is not in the forefront of our life and memory.
Fac03 - I am so glad that you have been able to start taxol and that it seems to have been easier for you. You have really been through it and have had a great attitude.
Princess - sending prayers, good vibes, and thoughts that everything is in order for Monday.
Twelvestrings - nice to hear from you! Sorry to hear about the neuropathy and low wbc. But you get a tummy tuck at the end for all your troubles!
Robinredbreast - so good to hear from you too. Keep us posted on how things go on your meds. I am dreading that part of it too and have read about side effects, etc. but am trying to keep positive about it all.
Sparkle - so it sounds like you will be done this coming week! Way to go!
I am two weeks and a few days past my last chemo so why isn't my damn hair growing? Ha! Just kidding...sort of. I would really be happy to have some progress in that area. My eyebrows seem to have stopped thinning and the loss of eyelashes seems to have stopped too. I have a handful left of each eye but I think all my bottom lashes are gone. I have my "dry run" of radiation on Tuesday and my first one on Wednesday. I am really scared of this for some reason.
Like someone else mentioned, I am amazed at how well we all adapt to what has been thrown at us. Yes, we all have our private melt downs and pity parties but then we get back up and get on with it. You are an amazingly strong group of woman!
Have a good weekend everyone!
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Hey all! I have been reading/lurking to stay current with everyone.
I had taxol #10 yesterday. I guess Sparkle, Princess, Twelve and I are in the homestretch! Yippee!!
Fac, you are a trooper and we are all cheering you on to finish line.
Bam, wow that was a scary heat/food truck incident. I have avoided being out in the heat after reading your story. I will look forward to your rads updates.
Robin, good to get your updates. I'll be on the tamoxifen train soon enough.
Salty hang in there!
My eyebrows are nearly non-existent, as are my lashes 😩. But I have about 1/2 inch of white with some darker hair coming in on my head. I'll take it.
As I wrap up chemo, I am thankful to have had this board for support! While I have faith in my treatment team, I have to wonder sometimes if the chemo did its job. After my lumpectomy, I got clean margins, but I had a 3mm tumor in SN. I opted against ALND, so won't know for sure if it had spread further. I figured either chemo or rads would get the rest, if any. But it's hard not knowing with any certainty what's going on in there. I suppose we all are putting enormous blind faith in our treatments.
I also wanted to add that I opted against having an Oncotype test. If my score came back low (I had high ER/PR and low kI-67), I would have likely skipped chemo and then worried whether it was a mistake. If my score came back high, I would have a larger fear of recurrence even with chemo and rads. And if imy score cameback in the middle, I'm sure I would have driven myself crazy deciding whether to do chemo or not. So I just went with my MO recomended treatment for node positive, knowing that I could tolerate it now. I don't have any regrets, and I won't look back, just forward!
Hugs to all, wherever you are now in your treatment/journey. Fight on!! MM.
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Thanks for the positive thoughts-
Also reading and catching up. I agree, it has been so nice to check in and have the reassurances that it is hard for everyone. That we each have our own set backs and changes in plans and we each are getting through it.
Bam- it took my hair 5 weeks to start coming back in after the 4 doses of AC and just as my hair started to grow, all of my lashes and eyebrows fell out. Now at week 9, they are starting to grow back in. So, I think I varies tremendously.
Carry onward my companions!
Karen0 -
Flunked my blood panels again. I swear, I haven't flunked this much since I drop-failed Statistics in college, LOL. I was close this time, though. Scheduled to try again next Monday.
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Princess - I am sorry you flunked again. Especially this close to the finish line. I am sure by Monday your body will be ready for your last spa day. And I am sure that if you took statistics now you would do fine...at least that is how I like to think regarding my own math mishaps.
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I finished Taxol almost 2 weeks ago and waiting for scheduling of radiation. The neuropathy in my fingers is worse now than on my last treatment. Is this a normal thing? Any suggestions to help?
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I have been through with taxol since the end of May. The neuropathy is worse now than it was then. I thought maybe the HP I am having every 3 weeks was making it worse. I talked with my MO on Tuesday and he said the HP does not contribute to the neuropathy and it will take anywhere from 6 months to a year to resolve. Not the answer I wanted to hear.
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Guys, I had neuropathy in 2015 and it started easing up after about 2 months. Didn't entirely go away for about 6 months, yeah, but give it a little while and it'll start getting better. I think the last month or two, it only showed up when I walked a lot so maybe taking it easy on your fingers might help? Hang in there!
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