Weekly Taxol group
Comments
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Nanette - that's a very interesting observation about side effects and how strongly we feel them. It makes a lot of sense!
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I started thinking that the steroids we received with our weekly treatment were masking in some way the nerve damage and the pain. Now we are by our owns
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Nanette- I'm really sorry your dealing with the neuropathy and now ant bites!! I hope they heal quickly with no issues!! I totally agree with you about the SE being felt more now that the premeds aren't there to mask the SEs!!
Yndorian-Gabapentin is a great medication for neuropathy issues but it makes many really sleepy which increases the risk for falls and injuries.
~Katie 💗
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I read on internet adefinition of systemic as a synonym of metastatic. I do not think, to my understanding, systemic and metastatic are synonymous. Systemic means, I think it could go somewhere else, such us invasive her2 positive, her2- and I guess some other cancers. that is why we are submitted to chimo to prevent that, but if ct and bone scans are clean that means the cancer is not metastatic. So systemic and metastatic are not the same thing Is my understanding or this definition site is wrong?
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systematic is throughout the body or the system, metastic is out us no longer in 1 specific spot but noted outside original area. They are not the same.
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anyone with skin rash?
I finished pacitaxol last week did 12 weekly treatments.
Now I have darkened skin around my hands, face, elbows, rash on forearms, legs, feet....
side effects I'm assuming....
also my toes numbing is tender and sore....
I also have cold/cough and generally feel very tired. Even out of breath. Just not like me...I was able to swim 2 to 3 times a week through most of chemo treatments these past 4 and half months.....
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countca- I've had a rash on my face since starting the taxol. Today is 1 week since last treatment and like you I'm really feeling it. Im really tired today, difficulty staying on task more than 5 minutes before thoughts go wandering and just overall bla. It's weird I almost feel worse than when in treatment.
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I’ve had a red coloring, like a sunburn, and almost pimple like breakout on my face and chest for the first few days after taxol, I just had my last one, so waiting to see how SE are. I have been anemic and exhausted the whole time, so jealous of those who could still do some exercise, exercise for me was going up and down stairs, sounded like I ran a marathon afterwards! I am just so happy to be finished, it really boosted my spirits. I know I still have to deal with it and SE but just not putting poison in me anymore is a wonderful place to be!
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Mnctech- my face is the same!! It looks like I'm a teenager with a bad sunburn.
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My neuropathy is not lessening at all, just feels worse each day. It’s starting to cause me to fall. I have to be very careful as I’ve fallen a couple times. I almost fell in the kitchen the other week, I fell backwards & hit my rear with the corner of the desk, that’s what kept me from falling. I did fall last week in the upstairs hall. I had dropped something & bent over to pick it up. I lost my balance & fell forward to the floor.
My chest is starting to hurt more. The incision doesn’t hurt but I’m getting phantom pains from my gone nipples. I’m off the Percocet, now I’m getting pains more frequently. I got such good news that I was hoping for a normal life again. That ain’t gonna’ happen which is bringing me down
The neuropathy can last for 3 years or never go away. My nails are growing in normal, trying to keep the damaged nails from falling off. I’ve been successful so far.
Still tying to hang in there, but starting to fall from my cheerful attitude of the last 6 months.
Doris
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Doris— I know the phantom pains, mine are on the side of my foob, but still sometimes I just grab it because it startles me. I was very lucky so far with neuropathy, I had some after my first dose and I think I felt a little last night but might have been in my head because I’m so worried about it. It’s okay to not be cheery all the time, but if it gets worse let the docs know. Cancer sucks
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Countca04,
If you’re experiencing flu like symptoms (headaches, body aches, and extreme fatigue) with your cough/cold and a low grade fever, I would suggest checking in with your MO about pneumonitis. Blood work may not help, since wbc will be in the normal or above normal range. Often X-ray will not show complete picture, only CT scan or specific testing for pneumonitis will give clear indication.
I started cough/cold almost immediately after 1st Taxol treatment. 4 weeks into Taxol, increasingly worsening of cough and difficulties with breathing, had chest X-ray, MO thought it was lung infection. But by week 6, after 2 rounds of antibiotics, I had reached near dire conditions. Needed CT scan, and that’s when I was diagnosed with pneumonitis.
Hope you’ll start feeling better soon
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Be careful assuming that everything is a SE. For days, I have had teeth chattering chills, fatigue that feels like I just had A/C, and just don't want to get out of bed. Today, DH had me take my temp - 101. I was actually relieved that I have an infection.
I have had skin toxicity on my hands, arms, face, head, neck, and feet. It's burns and stings. I put aquaphor to ease the dryness and stinging. It really helps. My doctor also put me on steroids and I used a steroid cream.
I can't feel my feet at all. I hope this gets better.
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Had my 3rd Taxol today. Iced my hands and took B6&B12. So far, so good as far as side effects. Now on a 6 he car ride for my daughter's graduation tomorrow.
I've been looking forward to this for 4 yrs. It's finally here and cancer will not interrupt a great day.
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Dawn - congrats on your daughter's graduation!
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Thank you kber. I brought plenty of tissues with me:-)
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For Doris, and anyone else who has to cope with neuropathy -- I hear you. My taxol and carboplatin chemotherapy made a mess of my nerves, and the neuropathy continued to get worse for several weeks after treatment ended. Fortunately, I did not have pain, but I did have a lot of numbness in my feet and lower legs, and some in my hands as well. During the last weeks of chemo and the first weeks after it ended I had to use a cane to walk, and if I stepped up, stepped down, turned, or did anything else other than creep along very slowly and carefully, I was likely to lose my balance. It was not a good time. I am now nearly 9 months PFC, and although I'm still pretty slow and clumsy, I can walk almost normally, and I rarely lose my balance. I think this is partly because I've regained some of the physical strength that I lost during chemo, and partly because I've worked on regaining balance and coordination. This does NOT mean that the neuropathy has disappeared; it hasn't, although the partial numbness has improved a little. What it does mean is that I can do more with my clumsy feet and my clumsy hands, and I don't have to worry so much about falling. If you have a problem with balance and/or clumsiness caused by neuropathy and you want to try some exercises, I recommend starting with a physical therapist because a therapist can suggest specific exercises that might be helpful for you. If you don't have access to a physical therapist or just want to try out a few exercises on your own, one resource that I have found helpful is "Better Balance for Life," a book by Carol Clements. The exercises are simple basic ones that can be done at home with no special equipment, and there are a wide variety of them, so it is likely that you will find something that will be useful. (I'm still working on the ones that involve standing on one foot. My cat finds this highly entertaining.) Good luck!
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I had my 1st taxol yesterday. I have some bone pain on and of in my right foot (which started after last Ac) , red rush on my face and some tingeling in my fingers, bluish discolouring at the roots of some nails I do not know expect for next days until the next one on next Friday. I hope all these Se is not too early because I know it will get worse.
I have her2positive 15 mm tumor. I am torn between lumpectomy ( suggested by my surgeon) and bilateral mastectomy. She is saying that because the her2 is systemic if recurring can recure anywhere and lumpectomy has less recovery time( I do not know though the difference between the recovery times for lumpectomy and bilateral mastectomy). But at least the mastectomy will eliminate recurrence in brests? I would like to have your opinions on this.
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I chose to have the troublesome breast removed. Less worry about recurrence. Lefty fed my babies well. I will, God willing, be able to keep her. Recovery time for double mastectomy is difficult and long. Recovery from mastectomy on ones side is much shorter. Lumpectomy nearly always involves radiation therapy, which can damage the skin, and therefore make reconstruction difficult.
You will hopefully be getting Herceptin to stop any HER2+ cancer growth, and the body can attack such cells. Our concern is to paralyze and kill any HER2+ breast cancer cells that have spread to other parts of the body, before they are detectable.
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mcbaker- thanks for reply. How long is the recovery for one breast mastectomy and mastectomy does not require radiation?
- The problem is that my breast are bigger than ddd and if I take one breast it will create unbalance in body. And also recurrence is possible in the remaining breast If one decides to keep it isn’t it
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If you have a mastectomy, you are less likely to need radiation, but it is not guaranteed.
You would have to get genetic testing to find out if recurrence is likely in the other breast. To cut off the good one just because the other has cancer makes no sense to me, unless you have a gene that makes breast cancer more likely. How many of your relatives have had breast cancer?
Yes, mastectomy of just one breast will cause an imbalance. That is why reconstruction is so important, to keep balance, and not cause stress on the back. On the other hand, your plastic surgeon might suggest reduction of the size of the good one, because very large breasts can also cause stress on the back. Cutting it off because it is large but normal makes no sense, either.
But those are all questions for the professionals to answer, I am not a professional.
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mastectomy does not require radiation? How long is the recovery time.di you know the recovery time for lumpectomy? My breasts are bigger than ddd so taking one creates unbalanced body and I do not want reconstruct ddd breast. On the other hand if one breast is left recurrence is possible there.
I am getting weekly taxol. Anyone knows what days are most difficult and what days where we have the lowest immune system. My 2 Nd taxol is scheduled on 17 and on 20 May my done is getting a prize for achievements in school. Do you thin I will be able to go there without looking like a zombie.
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I did nothing other than chemo on infusion day. The next day I would do a lot of sleeping. The next day (3), I would feel very fine. Day four and on until the next infusion I would be fairly normal. That was the pattern in the beginning. By about round nine, I was getting used to not feeling very good at all, and just existing, knowing that I was just a few weeks short of being done with it. You will be fine for the awards ceremony at your son's school.
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I am SO SICK of this. 25 days till the last taxol and then I'll have to go through this fatigue one more stupid time. Why can't I sleep more? Why doesn't sleep make me less tired? All i do every day is count the hours until the next day and I hate it.
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erin_t. I completely understand you. Taxol was a nightmare to me. Now I'm about 2 weeks PFC, if I did it, believe me, you can do it too. I won't lie to you, I have neuropathy, chemo brain and body pains but I've noticed than every day, slowly, I'm feeling better. I've counted the hours too, it isn't bad. You are in chemo so let it be. You don't have to do anymore than it
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Margun-my surgeon said that lumpectomy could be 2-3 days out, and that some people go to work the same day. Mastectomy of one side would be 6-8 weeks recovery time, but essentially you cannot drive for the first 2 weeks. I am electing for the mastectomy for personal reasons as I have a lot of extra skin on my stomach from having twins, and I am doing a DIEP that will remove a lot of the extra skin. Reconstruction will happen at the same time as mastectomy. I'm on my 4th taxol since Thursday, and the hardest days for me are the 4th and 5th days, but mostly because of the gloomy feeling and body aches. It doesn't prevent me from doing anything, but I prefer to be home with a heating pad.
EDITED to add: that I chose mastectomy since I am already small, and I won't have to do radiation if I go that route.
Erin-sending hugs. You have 3 left right? You got this!
Wishing you all a Happy Mother's Day tomorrow (if applicable
). We have a busy day scheduled, and I'm not looking forward to it. I will see how everything goes. Today was busy too, and I am exhausted. Staying in for the rest of the night.
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I have 4 left. How can days be so long. I have to just distract myself, somehow learn to do that. Rather than throw tantrums.
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You have come so far! We can do this. You were at number 4 when you were feeling like quitting, but now you are on the way to over double that! I agree with needing distraction. When I started to go in to the office, it made the days speed up. Are you doing anything fun tomorrow?
You are not throwing tantrums, you are frustrated!
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Dawn How was the graduation? I hope you brought plenty of tissues with you lol
Erin I had a double for many reasons. Radiation was out of the picture until I was in surgery. My bad boob decided to spread itself out into my sentinal nodes so as soon as I get my drains out I can go. Trying really had to be good to get my fluid numbers down so I can have them out by Tuesday...Radiation dry run is Wednesday but I probably won't make it. I had trouble with my double as I got an infection in both incisions, a really weird bug too and it was resistant to some of the antibiotics but luckily my PS had me on meds that were already trying to fight it and then he added another just to make sure.
Lumpectomy is where I started at in October. I decided to do Taxol/Herceptin 1st to try and beat this thing. I did for the most part. 3 tumors shrunk to non-existent and 1 decreased by 80%. I don't know what type of cancer you have I have 3+ with HER2+ IDC and it likes to spread.
As the others have said this is a very personal decision....Lumpectomy vs Mastectomy. when you find you have peace about your decision it'll be the correct one for you.
My husband told me the other day that since I had my 44DD removed I stand straighter. I didn't really notice I was slouching for all these years. So since you're bigger than I am getting the good one reduced some may help your back. I have less lower back issues and pain since about 5 pounds of boobs were removed!
Sending you prayers for your decision making process. Yes it's scary and the hardest decision you'll ever have to make but you can do this.
Yndorian .... are you okay?? I saw you deleted a post.... sending you (((hugs)))
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Nanette, it was an amazing day. My oldest daughter and I went through the tissues. My baby was all smiles. She was glowing. I'm looking forward to having her home all summer.
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