Weekly Taxol group
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Love Florida.. Where do you live in Florida. I am in the Tampa Bay region. Believe me, none of us are very good at accepting our diagnosis but over time you do find a new normal and start fighting.. Taxol is not that bad and from what I have heard you do not lose your hair with hercaptin. Ice your hands and feet and I have heard of some people using acupuncture to avoid neuropathy. You are going to be okay.
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LoveFlorida - Welcome. I am finishing up with 11/12 Taxol treatments and will do Herceptin until this time next year. I have a little bit of tingling/numbness on my big toes but my hands are so far ok.
As far as the icing - you should start about 15-20 minutes prior to the infusion of Taxol (somebody correct me if I have the timing wrong) and then 15-20 minutes after it finishes. I use Cryo Max ice packs (you can get them on Amazon or at Walmart. I use the 6x12 for my feet and the 6x6 for my hands. Some prefer to use the Naturacare booties (also found on Amazon) that come with freezable gel packs. Or you can use baggies and fill them with ice and put your hands/feet in them.
And I will angry, really angry about my diagnosis. When I was diagnosed in April, I was training for a half marathon (which I did get to run) and planning on more for this summer. Surgery and chemo put that on hold (fatigue mostly) but I am planning on starting back next month.
Everyone here is great and will help you along the way.
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DogMomRunner thank you for that. I have so many tell me all the time how strong I am. I lost a son in 2003 and they mean well telling me how strong I am. I don't want to be strong. I'm hoping once I get started with the 12 weeks of chemo I'll feel less angry and more accepting. I talked to the nurse about wanting the ice they said they would accommodate but no studies it's effective I told her I wanted to try thanks for all the tips as I'm going to do all I can to prevent it
mpv459 We live in Missouri and our Florida home is in Bonita Springs where We live December thru April.
Once again I am so grateful. I would rather have not joined your group but I have been feeling the love during even my lurking weeks I no longer feel so alone as all of you really do know how I feel
Of my family. my husbands family all of our friends I do not personally know anyone who has had breast cancer makes me feel even more isolated
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LoveFlorida- welcome to the one group no one wishes they belonged to but are glad they do. There is such a wealth of information on this site and the women are amazing!!
I didn't do the icing, never heard it until I started on this board and by then i was well into Taxol so didn't bother. I say try and stay physically and mentally as active as possible!! While I felt more mentally drained with AC I still had some serious blonde moments and deer in the headlight moments on Taxol. Many on here have also talked about different supplements like zinc to help with some of the side effects. I didn't have to do the Herceptin so not sure on those side effects.
I hope everyone has a good week and keep up the kicking cancer's ass fight!!🥊🥊
~Katie 💗
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LoveFlorida--I didn't ice but made a point to wear open-toed shoes and light clothing and then say no thank you to any warming blankets during treatment. I figured if the point was to keep the extremities cool, I could do that with my clothing. I had a tiny bit of neuropathy on the bottom of my feet but it never interfered with my activities. You'll probably be playing pickleball before you know it!!
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LoveFlorida- welcome, and I'm glad that you graced us with your voice. I'm in the same boat as you-- I didn't know a soul in my family or friend circles that had a breast cancer diagnosis. I remember at the very start feeling numb, but quickly moved to acceptance. My MO for the life of her didn't understand why I wasn't more emotional. We almost had a come to Jesus meeting because I was exhibiting "an unnerving calm" as she put it. I didn't like being told how I should feel. And that is one thing I love about our community here-- even though we all have a common thread in our diagnosis, no one ever expects you to feel or act a certain way because of it.
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Welcome Kambuka, Thisisnotfun, and LoveFlorida!
K and T - I too have bad bone pain from Taxol. I got it the first infusion. I asked MO about taking Claritin and he said that it only worked for the Neupon injections, which I do not receive. I take it anyway as I have bad seasonal allergies. Maybe it's the placebo effect, but it does seem to help a tiny bit.🤷🏻 My MO did give me an Rx for Norco, and a half of one of those usually does the trick. Sometimes have to end up taking a whole tablet, though. I questioned my MO about physical dependence on opioids, and he didn't seem too worried, “Let's get you through this, then we will send you to the Betty Ford clinic if you need it" we're his exact words. 😳 I'm grateful for the pain relief, but not so much for the strange comment. Anyway, bad bone pain on Taxol is real and I know what you are going through! you might consider opioids as long as you don't take them every day. Hang in there!
LF - I had just purchased a new home after living in an area that I didn't like for five years. Two weeks later I was diagnosed with BC. I was in denial, then super angry. Then I became scared and depressed all at once and I'm finally in acceptance and have peace. You will find your peace, too. 🌸
Mpv - We are on the same Taxol timetable. I just finished my 7th infusion today. Yours will be Thursday I believe? So far, with some Rx help, my SE's have been manageable. I did notice that my WBC lab score was low today. A significant drop from last week. Hope I don't develop anything from that. How are you doing?
Forgive my typing and anyincoherence in my writing. I have a massive case of chemo brain.
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Wheatscapes: Sounds like you are doing weekly taxol. Do you have the bone/muscle pain each time? I'm doing dose dense and I think the large dose does not bode well for the side effects. I had some oxycodone left over from surgery and they did nothing. I laughed as I said to myself that I don't see the big deal about them. Not only did they not help the pain, I didn't even get sleepy. Only the sleeping pill helped as I got a few hours of relief. I'm debating if I ask for a reduced dose or just switch to weekly. My MO prefers dose dense.
Hoping that your lowered WBC doesn't led to anything serious. Go overboard with the hand washing!
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Kamboka - Yes, I am doing weekly Taxol infusions. I do have pain each time, but it doesn’t sound as bad as yours. I don’t have bone pain until two days after, then I have it bad, typically at night, for 2-3 days. This week I had bone pain for five days. I had an infusion today, so I should be good until late Thursday night, perhaps Friday night.
I am so sorry the pain pills aren’t helping you. Maybe your MO can tweak your regimen? One would think that weekly would be better than excruciating pain, but I have zero expertise in this area so what I think is not material.
Hand washing for sure! I will know if I am in danger of infection in the next few days. I think they review everyone’s charts on Thursdays.
I want a margarita so bad.
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LoveFlorida, and MPV459, I also live in Florida 6 months plus. Outside Port Charlotte, Englewood area. We just bought a beautiful new home this past January. My other home is on the shore line in RI., I probably won't be going down this year due to chemo. I have 9 more weeks of taxo and carboplatin then start 4 treatments of doxorubicin and cyclophosphaide. surgery, radiation then every three weeks of atezolizmub for a year. I had lead an extremely active life. Grew up in Vermont so I still ski at age 62, golf, exercise, kayak, and work full time as ED RN. All that now on hold. Like you, my life is on hold. I just hope temporarily. I'm so tired at days 4 and 5 after chemo. I'm usually one who can't sit still always on the move, now when I sit down I fall sound asleep. Side effects minimal so far, Just tired and cranky not like me. Hair now falling out, already lost lashes and eyebrows after first dose. I was in shock when first diagnosed in July, normal mammo in September, felt like I was in tornado. Things have calmed somewhat now. Yes, I was angry, why me? I had already lost my first husband to trauma 20 years ago, left to raise 2 sons in college at the time, why me? Forgive your self, I have, for what I don't know, but I move on with as much gusto as I can manage these days to live. For my current husband, for my sons and my grandchildren, and for me. I love life and want to be here on this earth to watch my grandchildren grow, graduate from high school, college, marriage. My husband is 10 years older than me, and has had a 6 vessel bypass with now 3 of vessels blocked. I worry more about him then me. He has been wonderful and so supportive. I hope you have a big support group. I personally feel that helps. Sorry to vent like this, again not like me, "chemo brain", So many things now not like my norm, Hang in there guys, we are going to get through this. At least we are trying.
triple neg metastic breast cancer stage 3, axilliary node and breast node involved
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LoveFlorida - our stories are so similar - I retired in May and found out I had cancer in August - on my anniversary. I ham coming up on my one year date in 7 days. I has your exact same feelings - angry, sad - but you will get through this!
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Hi everybody. Long time lurker here, just deciding to join the conversation. It helps to read the posts, and know that others truly understand what you are going through in diagnosis, side effects, and all that cancer brings with it.
I was diagnosed in April, three small tumors in my left breast..around 1 cm each. Grade 3 triple neg. No node involvement, and pet scan came back clear so no mets. I did 4 doses every other week of AC (andriamycin and cytoxan) and now have finished 8 doses of weekly Taxol. 4 more to go, hurray for almost being done! Likely surgery in October. The doctor mentioned hormone therapy later. I think that's because two of the tumors had very slight positives.
I saw someone mention a while back that their first dose of Taxol was horrible, after being reassured that it would be easier. That was the same for me. First dose was awful after the steroids wore off--so much pain. But I have to say after that first one, the rest have been much easier. I had one that was a bit rough a few weeks ago, but now the muscle pain and such are much better. I still have muscle weakness, and I tire easily, but I feel much more like myself lately. I'm ready to be done with all this.
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StAuggie--I don't want to minimize anyone's SEs, but I have a feeling that those of us who do Taxol alone have an easier time relative to people like you who do it following other chemo drugs. I think you guys go into it already kind of beaten up and we start out strong and healthy, so many Taxol-only don't experience SEs for the first couple of treatments. Hang in there.
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Ingerp--that's what my chemo nurse thinks, too, and mentioned that having the residual AC still in my system as Taxol was being started could contribute to that also. The first treatment was quite discouraging. Thankfully, it has been much better. Plus now that I only have 4 left, I can see the light at the end of the tunnel, instead of it being a far-off dream. Five months of chemo, total...it's a long haul. And I don't mean to diminish anyone else's SE's, either...our bodies all deal with things differently, as well as our individual pain levels and personal situations.
I'm getting into the time to plan for surgery, and decide what to do there. I'm thinking double mastectomy, and then DIEP...I don't want implants, so it's either fat grafting or going flat. Not crazy about any of the options, and I'm not looking forward to surgery and recovery.
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Ingerp, St Auggie, Annie60, Martai and Wheatscapes… Hiya. I agree with the statement that taxol is more difficult if you are coming out of DD AC. 16 treatments sounded endless and it has been. However I am grateful that I have received good care and there is treatment available. Wheatscapes and I are on the same path and tomorrow I do my 7th treatment which puts me over 1/2 way done with taxol. I am doing well and will let you know about my wbc tomorrow. So far it has been around 2.4 which my oc doesn't seem especially concerned about. I hope that my treatment doesn't get postponed as (like you no doubt) I have my calendar marked down to the day it ends.
I know that this diagnosis is a hard one for us all. It is so scary and makes you put off things you planned and changes where you thought you would be. For me, I would have thought I would be working and just enjoying the summer. Instead I was diagnosed March 1, had Single Removal including a lymph node dissection, DDAC and 12 rounds of taxol..All of this will be finished up with radiation.. Long road but we will get there. Hang in there. 0 -
LoveFlorida- although I am a week out of the 12 taxol treatment I still lurk to see how everyone is doing. I completely understand how you feel. My husband had just retired and youngest was wrapping up high school and had gotten accepted to Harvard...we were so ready to start traveling and enjoying retired life...then hit in April with the diagnosis. I had and still have emotions that are all over the place...angry, sad, frustrated, scared. Friends always would tell me that I am so strong, but I feel like I am the complete opposite now. The past months have not been easy for me...crazy side effects; vision changes, varicose veins worsened, lack of appetite, hemorrhoids, etc. I did the icing on hands and feet. My regimen was to start 15 minutes prior to the Taxol infusion. I used the flexible chiropractic freezer gel packs. I would wear disposable rubber gloves and place each hand on a pack and also wrapped a freezer pack around toes and feet. I would wear thin socks under the ice packs. I would put a pair of those very stretchy socks I got from the hospital that I wore for my lumpectomy on top of each pack on foot to hold the pack in place. After 15 minutes I would take off the packs for 15 minutes. So basically 15 on and 15 off while the Taxol is being infused. I have no neuropathy in hands and a little occasional tingling in feet. I will be doing the Herceptin every 3 weeks for a year. I will start that dosing on September 3. My oncologist is letting me take a couple of weeks off before so I can go up to Boston and move my daughter into dorm. I am hoping to start feeling more like my old self as the weeks go by. My MO told me today that it can take up to 6 weeks for the body to fully recover from the Taxol. I wish you well with your treatment and just know that this site and the amazing people on it are great!0
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Just wanted to stop by and say hi to everyone.
StAuggie, it looks like we have some of the same plans and similar schedules. My 8th Taxol is on Friday.
I'm rooting for each of you.
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St Aggie, Happy Anyway... We are almost there... Hurrah for being in the final countdowns. Wishing everyone minimal se's and a fantastic weekend.
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Hi ladies! I hope everyone is doing well with the Taxol if you are working your way to 12. Everyone who is through, YAY on working to get your lives back!
Wheatscapes - ditto on the margarita or wine or even a beer! Congrats on the 7th!!
Hi StAuggie - my connection to FL is my husband's family. I agree with ingerp that those of us who just had Taxol got off maybe a little easier at least in SE area. Of course everyone is different and reacts differently to chemo and some suffer SE from the Taxol that are very debilitating. I am lucky that my SE were minimal. Good luck with your remaining Taxol treatments.
Yay on number 8 HappyAnyway!!
So today I went in fully expecting that my WBC would be low and that I would have to choose between the single injection neulasta or 3-5 neupogen shots. I wS worried that it might be so low that they would push it out a week. But surprise my WBC actually went up two points from last week (1.3 to 1.5)! No WC boosting shots.
I got my last (11th) Taxol! My NP said that the Herceptin will start next week and then every 3 weeks. I will be scheduling a consult with the radiation oncologist in the next 2 weeks to figure out my rad schedule.
And I rang the bell. I didn't necessarily want to do it, thinking I might jinx myself and thinking of all of those who have higher stages and may never get to ring it. But my husband told me last week something that I didn't know about. My mother in law who was diagnosed with advanced lung cancer late in 2018 went through dose dense chemo. Her tumor was inoperable both due to size and location. She completed her 1st of chemo and then went onto radiation treatment. The tumor never shrunk that much and it was expected that she would go through another set of of chemo. During the rad treatments they found that she had mets to her brain and she went on hospice. My husband and his family said that she really wanted to ring after what she went through. She passed away in May.
So today, I rang it for her. My husband didn't know I was going to do it. We both cried. But for once my cancer did something good.
I will check back in here to see how everyone is doing and to update on SE and hair. Love to all of you warriors
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DogMomRunner, I'm so sorry to hear about your MIL. I'm glad you could ring the bell for her.
Something I wanted to ask about, to see if others are experiencing this and if there's anything I need to do. My fingernails are super sensitive--I guess maybe I mean the nail beds? And underneath several fingernails, it looks like the nail bed is still attached to the nail and growing out. Not very far, but I don't know if I should cut my nails way back, or just wait and see if it detaches on its own? It's weird. It hasn't been going on long, but my nails look funky so I made sure I polished them with a solid color, not sheer, to cover it up.
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StAuggie: I, too, am having problems with my fingertips and fingernails. About two weeks ago, I had long, strong nails that were discolored about halfway up due to the AC I had earlier in the year. The bottom part of my nails seemed normal. I was off chemo for two months. All of a sudden, my fingertips got tender. I knocked my long nail backwards (pain) one day, so decided to cut them all down as far as possible. Now, not only are my tips sore, but the nails are splitting and peeling where the dark part was. I can't cut them down any more so they sometimes snag. I've filed and buffed to try to smooth them down. I've also gotten some cotton finger cots to use when I do things that snag the nails. Occasionally, I'll put a bandaid on a few of the worst ones when I'm out in public. I hesitate to polish them, even though that would cover some of the ugliness because the polish weakens my fingernails. I bought some Zoya polish for my toenails (lost the entire nails from both big toes after my first taxane infusion). I wear a bandaid on the big toes and like to have the others polished when I wear sandals.
I hope that you nails can hang on unti they grow out stronger. I hear it takes about 4-6 months for them to grow out.
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DogMomRunner, how wonderful of you to ring the bell for your mother in law. Hugs.
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DogMomRunner- I love that you got to ring the bell. Your story brought tears to my eyes— it was a beautiful gesture
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LoveFlorida, I have been feeling a lot of fear, anger, and guilt, too. I decided to stop saving for retirement. I'm 45 and figure it would be wonderful to make it another 20 years,but I won't even be retired at that point. Depressing, but I'd rather spend money now on my bucket list.
Things have been better since I started chemo though. I am trying to find things to do with my family that I can look forward to.
I am doing the icing of hands/feet and think it helps. I've done 6/12 taxol and keep the ice on for 1.5 hours (includes the 15min before and after). I try not to take off the ice for long when I get too cold. I haven't had any issues yet with neuropathy or nails.
I hope things get better for you and your chemo goes well.
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DogMomRunner-Congrats on being done, and I love that you rang the bell for your MIL! That warmed my heart.
Hope you ladies are doing well!
I am 6 weeks PFC, and 4 days past my surgery. I was preparing for the worst, and hoping for the best, and thankfully everything is going well so far. I am just taking Tylenol and anti-inflammatory medication and it is a world of difference from my C-section. I had a unilateral mastectomy with DIEP reconstruction, and I thought for sure I would be on heavy meds by this time. I have been on these meds since Wednesday. I did have oxy the second night because I started coughing, and that was painful. Anyway, my point was that I feel alert and active, and it feels good to have the surgery done with. For those of you that have the surgery phase coming up, I wanted to share that it wasn't too bad. It feels good knowing that bad tissue is out of me finally!
Today I noticed I have baby eyelashes and eyebrows!!! I am so happy about that progress. My hair is growing, but it is mostly gray, and still not a lot of coverage. What didn't fall out is what is growing. Neuropathy is pretty much gone. I have a small amount of numbness, but it is less and less each week. I didn't lose any fingernails or toenails as of yet, and my head does feel clearer!
I shared this link on my surgery page, but if I had known about it earlier, I would have liked to listen to it when I was in the doom and gloom phases of my Taxol. This was provided by my medical facility, and maybe it can help someone here. It is a affirmation/visualization exercise.
http://74.62.111.169/kaiser/download/download_successfulSurgery.asp
I send out prayers for each of you that you have the strength to get through this. The hard part is that nothing is guaranteed, but hope is what we hang on to.
Have a lovely weekend!
Edited to add: I just talked to the surgeon, and he said I had 3 lymph nodes tested which all came back negative for cancer. He also said I had a pCR, so chemo did its job properly! I'm so happy!!! I can breath a little bit more each time I reach a milestone, but being triple negative I know I will need to change some things about my lifestyle and habits. I am committed to getting back into shape and doing whatever I can to reduce risk of recurrence.
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If you are on the 12 weekly Taxol program and have to miss a week would that cause any type of problem?
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ik0106-talk to your oncologist. I missed number 6, due to a work conference I had to attend for retaining my professional license. My ON was fine with it, and said I would just add it to the end. It didn't cause any further problems.
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Some people do have to miss weeks, I'm sure they prefer you don't but life happens. I know of 1 person here who missed due to weather and ended up not making it up, and another person who had a conference/trip and planned in advance to skip one week along the way and it is OK. So, depending on details, it is certainly possible and has been done successufully.
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Notdefined, thank you for your uplifting post. I am thrilled for you.
ik0106, my Taxol began as 12 weekly treatments. My MO added Carboplatin. Now I have 3 weekly TC infusions, then a week off, repeat. I believe you will be just fine. Good luck!
Thinking of you all!
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Wheatscapes How did #7 go?? Five more to go and done. Se's for me were minimal this time.. Lots of fatique but recovering.. How are you doing??
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