Starting Chemo October 2018
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All right, April, go and give Mr.T the business. I'll be meeting him tomorrow, armed with gloves and booties as well. It's gonna be so much easier than the AC, you'll see. Good Luck, don't forget to drink drink drink...
NotGIvingUp, you have every reason to be upset! It's another situation where we need to be told exactly what to expect, and what the worst case scenario is. If there was a chance that wasn't your last chemo, someone should have mentioned that. I hope your tests have good results, and that the bell cannot be unrung. I don't have my enzymes checked as far as I know, so I can't comment on that part.
Joules, I was just having a convo with my husband about how glad I am that my MO is willing to try all types of alternative medicines. She is relatively young and very open to things beyond what traditional Western medicine is able to address. The fact that she has someone on her staff who does acupuncture, nutritional supplements and so on speaks to her willingness to at least try to think outside the box, and I love that.
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Hi Everyone! I'm mostly a lurker when it comes to message boards but thought I'd chime in on the neuropathy question. My BS is big believer in treating the whole patient and working to prevent issues rather than reacting after they occur. She has a PT that she refers all of her Taxol patients to prior to starting. I'm doing 12 weekly and have a series of exercises to d at home in addition to seeing the PT every 3 weeks.
According to the PT neuropathy issues are less with the weekly vs dose dense and usually appear by week nine. Since starting the program very few of their patients experience any neuropathy at all. Those that do have minor issues that resolve quickly after treatment.
In addition to the pt exercises they've recommended
- keep knitting (assume crochet, needle work, etc. would also be beneficial)
- ballet, tendus and round de jambes were specifically mentioned for neuropathy
- if start to feel tingling squeeze a stress ball or putty, roll your feet on ball, rub fingers or toes against something with texture like corduroy
Good Luck!
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Notgivingup my MO has been monitoring my liver enzymes very closely as I have a liver disease. Luckily my levels have stayed in the normal range throughout treatment. As someone who has had to deal with very highly elevated liver enzymes in the past, the side effects are not fun. But the liver is a very resilient organ, and I would imagine with a short break in treatment, should bounce back rather quickly. As hard as it can be to trust, our MOs typically have our best interests in mind.
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Patrice, good luck today! I’m day 2 and feeling good so far. The booties weren’t too bad. The gloves were very cold. And not having use of my hands that long was tough. Lol. Next time, I will probably use the booties and then maybe hold something cold on and off. I’m sure you will do great. It was nothing like AC. Sending thoughts your way. We can do this!!!
Casey, how are you? Haven’t seen you post in a while?
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hello ladies just checking in. I start taxol week after next. The last AC wiped me out with fatigue it was ridiculous my last AC was Nov 8th, it took me til Monday of this last week to feel normal again. Oncologist here back home wanted to wait a bit so I’m strong going into last 12 rounds because my fatigue and nausea kept sticking around. Am able to function better now and get a few things done which is good for my spirits. Am on medication for depression/anxiety and seeing a therapist to help me get through the rest of my chemo and surgery and whatever else gets thrown at me. I’m sleeping well and enjoying this mini break.
Not giving up I’d be supremely irritated. I’d demand everythingbe upfront from now on. It’s hard enough dealing with this crap then to be blindsided by more crap just isn’t right. Thinking of you and hoping all things work out in the end and your given a upfront plan to move forward.
Casey, very curious how your MO appointment went, I love how direct u are, wish I coulda been a bug on a wall to hear how that exchange went. Hope your doing well!
Fritz, how jealous I am of you getting that big marshmallow as a visitor! Thank you also for the advise I’m following suit and feeling better. Hope the last stretch of ur chemo treats you kindly!
Patrice, I guess you’ll be the guinea pig now since you’ll be ahead of me in chemo going forward. Report back and let me know if mr. taxol is kinder than mr. Ac.
To all u ladies started on the taxol hope all is going well and continue to report back on how it’s going, 12 rounds sounds daunting but if it’s kind then I guess all is well! Once we get Fritz over the line we will have all conquered AC which is a huge accomplishment! March on brave ladies, I think of u all often.
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Agd920, thank you for the info on neuropathy. I am at week 9 and I've had the beginning symptoms of neuropathy for the past couple of weeks. I will definitely look into physical therapy as a way to prevent it from worsening. My guess is that my oncologist will lessen my Taxol dose for these remaining weeks.
Hope everyone has had a great weekend!
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Hi all. I'm finally crawling out of my chemo cave after tx last Monday. I'm struggling with horrible heartburn, but at the same time wanting to eat all the things. I'm starting to see how cumulative these SEs are. Fatigue is hanging around longer, and neuropathy is a little worse than last round. It went away completely before I had to have round 4, so I'm hoping that's the case again this time. It's more annoying than anything.
I'm trying to do everything that needs to be done around the house on top of everything that comes with the holiday season and caring for 2 young kids, and my body is just saying no. I'm glad I have 2 weeks of feeling mostly good ahead of me, and that I don't have to have chemo again until Dec 26.
I finish chemo mid-January, and then will be having my BMX. For anyone doing neoadj chemo, have you started talking to your BS about surgery? I haven't had any communication with mine since I was dx, so I'm wondering when I'll need to get that ball rolling. I still have no idea about what to do about reconstruction, and radiation apparently complicates that whole process.
I hope everyone is doing well. I can see the light at the end of the tunnel for most of us!
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hi fritz, sorry about the side effects but happy for you that you get a break before you get hit again with more chemo.
Yes already getting ready for surgery breast surgeon has me doing a breast mri between taxol 8 and 10 which will be about mid February to restage me before surgery. pathology following surgery will be final staging. Talking about surgery makes this more real for me because aside from hair loss the loss or change of a breast is something you can see. But in reality I’m looking forward to surgery because I get to get this dang thing outta me. I’ve been tossing back and forth between lumpectomy and mastectomy. I’d like to avoid radiation if possible. So many decisions to make. Thankful I still have more time to weigh my options and make final decision after breast mri and breast surgeon consultation. I’d definitely check in with your breast surgeon as they should be monitoring your progress.
Hope your doing well and get to enjoy some normalcy for a bit.
Thinking of you ladies!!
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Hi all,
Trying to stay calm and stay away from "doctor google" and studies (even though I do FAR better with research in my hands than no research), but I just found the new letter in my online medical portal from my surgeon to my GP, and now I know I think I know why she was acting all squirrelly with me when I went to go see her last week. I went in because my tumor site was having sharp stabbing pains again (it's actually how I originally found it - sharp stabbing pains) and it felt...bigger. Actually, it was strange to be able to feel it easily at all, because two weeks earlier the surgeon and I were both commenting on how happy were were to be having difficulty finding it. And then I had my first round of dose dense Taxol, and a few days later, the intense stabbing pains at the tumor site started happening.
At first, I thought they were similar to the pains that happened with my first round with A/C, so I called into the nurse line, just to confirm and ease my worries. But they told me that it definitely wasn't normal, and scheduled an appointment for me. The onco nurse sent me up to the surgeon, who did an u/s, hemmed and hawwed a bit (which was odd for her - normally she's very forthright with me), and then told me she wanted me to have an MRI, which I'm having this evening.
Her letter to my GP just popped up in my portal, and at the very end, this is what she wrote: "The ultrasound measurements today were X.X cm tall by Y.Y cm wide, which is larger. There appear to be some cystic areas today possibly consistent with central necrosis. We previously planned on breast MRI near the completion of chemotherapy to re-assess the resectability of the tumor. I would like her to have that done sooner to make sure that she is having a response to chemotherapy and to re-assess the resectability of the tumor."
And now I'm incredibly worried and nervous. Has anyone else had something like this happen??? MTIA
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HI all - Had my first meeting with Mr.T on Friday. Infusion took a long time because the nurse has to check blood pressure frequently during infusion and speed up or slow down the drip depending on results. There were steroids, benedryl, and zantac administered as well. I feel ok, just tired as usual. Nurse warned of se's like diarrhea, nausea, fatigue and neuropathy. So far the only se I have is my good friend constipation. I am starting to feel the emotional toll of all of this like I never had before, and I don't like it. I feel like I am either crying or angry at any given time. Good times at my house this week.
Jill, sorry you were suffering from the se's, but you're so much closer to being done. I haven't talked to my surgeon either, my MO was just mentioning what to expect after my last taxol at my last appointment, but that is at least 11 weeks away so it was very brief. I just don't think i can or should make any big decisions re: surgery at this time. I've done so much research on the various types of surgeries and reconstructions, and frankly, they all scare the crap out of me. I do think I will lose at least one breast, so decisions will have to be made. After chemo, scans will be re-done and we will weigh my options. I will have to get radiation at some point as well. I just need to focus on one step at a time for now, it's all I can handle emotionally. (boo-hoo, poor me, I know.)
Rabbit, good to hear from you, so glad that you reached out for help and got some meds to help you cope. The taxol wasn't bad, although I only had 1 treatment, I've suffered no se's so far. Worried about fatigue as I really really felt it after AC #4, but doc said that was AC related anemia. Trying to stay active to fend off the exhaustion, but it's cold here, so walking the dog is a bit of a challenge. Bundle up and go they say, and so I will tonight after work, supposed to be a balmy 40 degrees.
Antigone, I am sorry that I don't have any advice or answers for you, but i will be thinking of you and sending good vibes your way. I do know that if the chemo is destroying the tumors, they have to go somewhere and be disposed of by your body in some way, hence the necrotic tissue, which would take up space until it is destroyed by the body. Try not to borrow trouble, stay away from the Googler and let the docs explain it to you. Actually, demand that they do.
Hoping all of you awesome chicks are doing well, handing the poison like champions and knocking out the treatments. Take good care, drink it up and be as positive as this crap allows.
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Good Evening!
I hope everyone is doing well. This week I went for more bloodwork and my breast MRI. Today I got a call about my bloodwork results. My liver enzymes are really high, my kidneys are not doing great. So on top of meeting with my surgeon on Friday, my MO wants me to get some iv hydration. Hopefully it will help my kidneys and help with the liver enzymes. I will keep you all posted as to how things go.
I hope you all are doing great! Keep going strong!
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Antigone, I am sending love and positive energy your way. Cancer is a crazy journey that is never a straight road. You will get through it stronger than you were before. I have had so many surprises along the way. I originally wasn't even supposed to have chemo, only radiation, and then suddenly my pathology changed and now here I am. I'm glad we all have each other.
Just had my 9th Taxol infusion on Tuesday. Getting close to the end! I feel like some of my SE's are beginning to normalize while others are ramping up. They lowered my Taxol dose starting this week due to the neuropathy. Neuropathy isn't that bad, no pain, but there is some numbing in my fingertips. Luckily, the docs don't take that lightly. I haven't really been able to taste food normally for a few weeks but I feel like I'm beginning to get taste back this week but I'm not sure if that's typical or if I'm just imagining it or what. Constipation and acid reflux is much better than it was in the beginning so for those of you just beginning Taxol, my experience is that those initial SEs level off in time.
Hope you all have a beautiful day!
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Hi all,
Just met with MO this morning and got great news - chemo is working and there is significant shrinkage. It's looking like I may get away with a lumpectomy and lymph node removal. Yay! I was panicked about having to make reconstruction decisions and it seemslike I may not have to. Doc said keeping or removing breast wouldn't matter in stopping the cancer from spreading. Since it has already started to appear in my pelvic bone, that ship has kinda sailed. So, hopefully post-chemo, I will get a lumpectomy, then radiation on my breast and pelvic bone, then on stage IV meds for prevention of any further metastasis. FInally some good news.
Taxol #2 tomorrow, I'll report back from there. Take good care all!
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hello everyone!
I’m headed now to Taxol #2. I did get one mouth sore and have a chest cold. Did chest X-ray and all looked good. Dry cough. No fever thankfully. Hoping for great blood levels to allow me to continue. I am working hard towards this finish line so I can do reconstruction in April. Hope everyone is doing well.
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Hi everyone,
Patrice and Joules44 - thanks for you advice. I met with the onco nurse yesterday, and the MRI results are good! No growth! Basically what we're seeing is a dead tumor at this point. We don't know how much more shrinkage we'll see, but we're seeing a ton of necrosis from all of the chemo, and it's turned into a "soft" tumor from a "hard" tumor. All good things. So onword and upward with more Taxol.
Patrice - I'll say again, the fatigue is NO JOKE. I spent most of the week after my first visit with Mr. T on the couch. Literally getting up to get a class of water would exhaust me. I'm thankful that I haven't had much nausea, but this exhaustion / fatigue is kicking my butt!
Joules - I'm so happy for you for getting so close to the end! I'll have two more rounds after today (I'm typing this in the infusion chair - and then I'll be done (i'm doing dose dense). I haven't had *intense*neuropathy yet (minor), but I have been icing both hands and feet throughout infusions.
SadleyNew - Sorry to hear about your chest cold, but glad your x-rays look good. And I have my fingers crossed that your blood work looks great, as well, so you can finish out this leg of your recovery journey.
I'm just now home from Round 2 of Taxol, so I'm now officially 75% done with my chemotherapy regimen! *insert gif of GIR dancing like a monkey* I have a few errands planned for first thing (like FIRST THING) tomorrow morning, because I know that fatigue is going to hit like a train around noon or so, and I want everything done I can before it hits.
I also got my labs back today from my blood draw on Thursday, and, my liver enzymes are off the charts. Specifically AST and ALT. Like four times higher than they should be. And it started when I started the Taxol regimen.
I raised it with the nurse helping me with the infusion today, and she's raising it with the rest of the team, because these numbers are absurd. They can indicate severe liver damage OR severe heart damage, so I'm taking them into my cardiologist on Monday (I'm being fitted for a holter monitor to see why I keep going into severe tachycardia after Taxol - did with A/C, as well), so we'll see what they say, as well. I tried to tell my team when I met them that, "You know when you see a commercial for a drug, and they say - "A small percentage of patients may experience these very rare side effects: list,' I AM THAT SMALL PERCENTAGE. But they just laughed at me. They're no longer laughing. *sigh*Gotta keep smiling, though. I'm still here, the tumor (whom I have lovingly named Tynnifer after the horrible character on parks and recreation) is dying, and I'm nearly done with chemo. Life *will* get better, even if there are occasionally really bad days now. It will because I'm willing it to do so. And old affirmation of mine that I've adjusted for my current situation? "There are good things in the universe. Good things have happened for me, and will continue to happen for me in the future. Because I deserve them."
In any case, wishing everyone well, and I hope you're all staying super hydrated during this ever-drying holiday season. Take care, all!0 -
So today did not go as planned. Saw my surgeon, she wanted a sonogram of my liver, went for the iv hydration, more bloodwork(drawn 3 times), met with np, sonogram done and everything was good. Met with my MO also.
My liver enzymes are still climbing so they admitted me to the hospital for about 48 hours. I cried when they told me. They will be giving me a medication that will hopefully flush my liver. I am not happy being in the hospital. I know I need to be here, but I would rather be home with my family.
I hope everyone had a better week then I did.
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Antigone great news about your dead tumor!! Love the name you gave it. I hope your liver starts to behave and those enzymes decline.
Notgivingup I’m so sorry you’re in the hospital!! Hopefully your doctors can get this under control and you’ll be headed home soon
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Notgivingup sorry to hear you’re in the hospital, hope the meds work quickly so you can get home. Hang in there, you are tough! Hugs from NY
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Notgivingup - I'm so sorry to hear you're in the hospital. I hated my stay a few weeks ago, as well (cried when they admitted me, too - though mine was for neutropenic fever). Hopefully they get your liver enzymes under control soon, and you can get back home to your family.
Can I ask what your enzymes are doing? My AST and ALT have been climbing like crazy since Taxol (think 4x higher than the high range of normal), but the nurses are having a rather blasé attitude towards it, which is worrying me. I don't drink alcohol (haven't actually for about a year - just honestly haven't had much time!), and I prefer Advil to Tylenol, so it's not that. It really is the Taxol, and I'm concerned.
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Antigone, My liver enzymes were slowly creeping up. By the time we were going for my 4th round of taxotere/cytoxan, they jumped. They repeated the bloodwork 12 days after chemo. It was still climbing, so they thought iv hydration would help. They kept climbing (one level reached 1100) so they is why I'm in the hospital getting a drug to flush the liver. I don't take Tylenol, the last time I drank was November 24th. So they know those aren't the reason. They are thinking it most likely is the taxotere. I hope your levels come down very soon.
Newfromny, I am living on long island. Where are you from?
Thank you Fritz!
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notgivingup I’m from Mahopac in Putnam county, I hope the meds are working for you. I’m day 9 from my 3rd infusion and feeling really awful today definitely tougher than the last 2 rounds but we have to hang in even when we don’t feel like it
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hey everyone. Having terrible chest pain and upper back pain, shortness of breath. Can’t take a deep breath without pain. Going to go to ER this morning. The oncall nurse said it’s normal to have sternum pain with Taxol but not what I’m describing. I told husband to tend to kids so going solo. Sometimes I feel stronger that way. I’ll keep everyone posted. Hoping for a simple answer.
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sadlynew I hope everything is ok!!
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Sadlynew, I hope everything is ok with you. Sending you positive vibes and prayers.
News on me, I am still in the hospital. It looks like I will be here at least 2 more days. Ugh. I just want to go home. Enzymes are still high.
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Sadlynew hope you're feeling/doing better.
Notgivingup being stuck in the hospital sucks. Hopefully they can get your enzymes under control so you can go home.
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thank you everyone for your thoughts and good vibes. I’m spending the evening in the hospital. CT scan of my chest was clear. I’m going for a heart stress test in the morning. The back pain is terrible. I’ve never had back pain in my life. I’m starting to wonder whether all of this is some kind of delayed allergic reaction to the taxol? Just when I thought Taxol was going to be a breeze..... ugh!
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Notgivingup and Sadlynew, I'm so sorry you have to go thru all this extra trouble. It's just not fair that something is always ready to sneak up and knock us off track.
Sending good thoughts and strength your way.
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hello just checking in. I have bloodwork tomorrow and my first dose of taxol is on Thursday at 10:15am. These next 12 rounds my hubby will be right at my side so this time around I’ll have a hand to squeeze if I’m scared. I am alittle nervous about all the steroids I have to take beforehand, possible allergic reaction,and all the unknown factors. I felt the same way with AC but I didn’t have the extra steriod thing to consider. Other than my nervousness I’m ok, I feel normal and like myself, little trouble sleeping but I think once I get a few under my belt I’ll feel better about things.
Patrice- your MO has a great plan for you going forward, that’s great she has laid out for you a roadmap so you know what’s coming. You inspire me, my guinea pig. How’s the taxol treating you?
Not giving up- hope your enzymes are coming down so you can go home soon!
Sadlynew- hope all your tests come back clear so you can go home too. Hope when your back on the taxol train se are kinder to you.
Fritz, Joules, Antigone, newfromny and all others hope your doing well and chemo is treating you well. Casey hope you write soon and let us know how your doing! Onward and upward ladies!!
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Antigone, I love your affirmation! I will write that down and repeat it often.
SadlyNew, I am relieved to hear your chest scan was clear and anxious to hear results of the stress test. Reading all of these different reactions to Taxol really hits home how poisonous this drug is. I know it will save our lives but seriously, wth? I pretty much never have a really good day anymore. I am so tired these days and I just never feel really healthy anymore. The end is in sight with my 10th round tomorrow but it is taking its toll (it's Tax-oll, lol) on my body.
Notgivingup, I am thinking of you and sending strength and love your way!
Does everyone have a port on this thread? I love my port so much because I can basically be poked and prodded pain-free. It is one of the things I am most grateful for in all of this.
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Hey Rabbit, good luck on Thursday, you'll get thru it like a champ! The first meeting with Mr.T. takes a while, think i was in the chair for 4.5 hours. It has to start slow so you can be monitored for reaction, but once you are in the clear, they speed it up a tiny bit. I had my blood pressure checked every half hour, apparently it goes up with the Taxol. Mine actually went down during infusion. I was told I am an "odd duck" lol. The se's for me were very minimal, just constipation ( I was told it would be diarrhea, so didn't take any Dulcolax, who knows what the hell happened there, odd duck again?), and fatigue. I find that like AC, if I can force myself to get up and take a walk, I feel better. I am getting a little achy this afternoon, but nothing terrible, just a little bit. I did ice my hands and feet to help prevent neuropathy, just held onto frozen water bottles and put one bottle under each foot. FUN! And that's the extent of it so far. However, who knows what lurks around the corners of the next 10 treatments...
Go get 'em, Rabbit! You got this!
Sadly and NotGIving, how are you two holding up? Hope you get paroled early and can continue to get this done.Casey, where are you? Please check in, I miss your posts and humor.
Antigone, I have a port, and sometimes it irritates me, but you have helped me look at it in a different light. Thank you for that and for the affirmation. Both are helpful and hopeful, and you are right, the end is in sight!
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