Weekly Taxol group
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Claritin seems to resolve a lot of SE's, as well as Benadryl. She can go right ahead with it.
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Doris...Seems you and I are in the same "neuropathy" boat with Taxol. I was told to take B12. I will add B6. Now, I do take 900 mgs. of Gabapentin a day...300 mg., 3x a day. That made a big difference. I've been off Taxol for almost a year. PT really helped me for balance, but I still have to be very careful and will not go out the door without my cane. It's so very frustrating. It's so hard to explain to people that I really have to think about every step I take. Walking does not come naturally. Of everything I've been through, the neuropathy is absolutely the worst....so far! I truly feel your pain.
Hope
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I finished Taxol 12 of 12 on Thursday. My Infusion Center did cold mitts and slippers, and I haven had any neuropathy type SE. Can that come on after the fact?
Also noticed that this last round seemed to target my eyebrows...how long after the last Taxol did you guys continue to shed? Seems unfair to have kept eyebrows for 16 weeks, then lose them on the last day.
Those of you starting your journey, take hope, there IS a light at the end of that tunnel!
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Poppy I think if you were going to get any neuropathy, you would have felt a little by now. And the lashes/brows frequently don’t come out until a little after treatment. I think our head hair goes sooner because we rub/brush/wash it but we don’t tug on our lashes/brows so they don’t come out until the new growth pushes them out. Heads up that you might go through several rounds of shedding eyelashes once they come back in. It was explained to me that while normally we lose a few here and there, the chemo resets them so they’re all on the same growth cycle. I shed some about four months PFC and am losing some more now about eight months PFC. It should get back to normal after a few more cycles.
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at almost 2 months PFC I just found out I need to have DH Nair my legs.!! I've been so caught up in recovering from my BMX I didn't pay attention to my legs... after all its been 4 months since I've had to worry about shaving them. DH also says my eyebrows are beginning to fill in nicely... So there is hope of 'normally' returning shortly after taxol ends!! Also my head is like a white fuzzy peach with some curls starting to develop too!
Be blessed ladies and I hope you've each had the best day you could (((hugs)))
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My Oncologist assured me I would not lose my hair.... I didn't ask the question she told me....but now I am losing hair in handfuls.... have no wig. No prescription for a wig and it just feels like the final straw.....how do I keep my privacy and not say it's cancer when I have no hair?
Sooo fed up now....m one thing after another
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Lily55, lo lamento, su medico no debio haberle dicho que no se le caeria el cabello con taxol. Casi siempre se cae, aun a las personas que hacen lo de la gorra fria. Quizas pueda conseguir algunas extensiones y hacer una especie de vincha para usarla debajo de los pañuelos o gorros. A mi me funciona. Antes de que se de cuenta ya le estara creciendo nuevamente. Le mando un gran abrazo
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oh Lily I'm so very sorry!! 😭 Many of us have heard the same thing yet Taxol does cause "some" to experience hair loss. What mist of us in the Dec group was we cut our hair short so we weren't having handfuls coming out.
Maybe yours will just really thin... some do experience that but getting some caps or hats or scarves can be a life saver.
((hugs)) Lily
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I shaved mine because I was told that I was getting so many bald spots, and my scalp was sore. It is altogether possible that Taxol hair loss is rarely complete-- we don't get the billiard ball effect. Maybe some retain enough hair that it would look normal peeking out from under a hat. But either way, hats and scarves will make things easier. And there is no shame in fighting cancer. Letting just a few of your friends know is unrealistic, and adds to your stress. There is a whole wonderful support structure out there, and a lot of people who can look at you, ignore the headgear, and discuss whatever else is worth discussing. When you get a cancer diagnosis you do not become cancer, you are still yourself.
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had taxol 10 of 12 Friday and I’m struggling to stay up for Game of Thrones tonight. My husband offered wait to watch it with me tomorrow. That’s true love!
But I think I can make it.
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Nanette she looks at my mouth each time I see her. It is getting better, no more severe dryness or mucus. Things are starting to taste as they should, not perfect, but better. The foot neuropathy is worse than I thought it would be. I just pray it won’t last the three years the oncologist mentioned.
My daughter in law’s mother has just passed the 20 year mark with no reoccurrence of her breast cancer. She had a lumpectomy with radiation & chemo. I find this to be marvelous, there are some good outcomes.
Best wishes to all.
Doris
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Oddly enough, when I did my own research pre-treatment, I read that while Taxol isn't the harshest chemo drug, it is one of the worst in terms of hair loss--that 96% of patients lose their hair. I find it hard to believe an MO would say otherwise. (FWIW I never wore a wig. I wore baseball caps whenever I went out except I wore bandannas to the gym.)
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Congrats to the ladies that have just finished Taxol and the ones nearing the finish line with only 1 or 2 left. Stay strong.
Nanette7fl - I read your post about not having cancer in the lymph nodes and then it appearing after surgery.
Im just trying to get my clearance for surgery. Did my Ekg, chest xray, blood work and MRI. Now Im concerned if they will find cancer in my lymph nodes when it wasnt there initially. I dont want more chemo or meds. I just want to be done. I will stay positive.
Also for ladies that have long finished chemo, if you experienced shortness of breath, heavy breathing walking, has it resolved a few weeks or months after chemo? I was referred to a cardiologist before I can have surgery due to my heavy breathing during short walks. Anyone have this issue and it fixed itself later? or did it become a bigger issue with your heart and lung capacity. Chemo just pisses me off. To kill your good and bad cells and to possibly ruin a healthy functioning heart. Damn if you do damned if you don't!
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I have spent most of today just crying, its just the final thing, its Easter here, so nowhere will be open to buy a wig etc.........and I think its cruel to tell a patient one thing when its clearly not true, I have only had two chemos and fear its only going to get worse.my feet and ankles and calves are also VERY swollen up.......lots of fluid retention. I just don´t think I am going to beat this thing anymore as its relentless......one nasty thing after another and I am just not strong enough
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I got through my chemo OK, but realized that some of my other complaints went away, which means I have an auto-immune disorder which has emotional implications. Then I passed the anniversary of my sister's death a year ago. That is when I fell into a depression. I have been on antidepressant meds nearly all my adult life, and have trouble trusting psychologists and suchlike. (Being one myself, I have seen some awful nastiness.) But this time I know I need some counseling, because an increase in antidepressants is no longer an option. I made an appointment, but it is far out, May 1. I had a session with one who is not available on my insurance, she also does charity work, as a bandaid until May 1. It was an essential.
I am only stating this so that you can take a look at the options.
My wig is not comfortable-- my headcovers are much more so. Go to the store and buy yourself a big scarf, and you can cover the hair problem and look beautiful, too.
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Pommon (Doris) your feet will get better..... mine made ot hard to walk sometimes because I had trouble knowing where I ended and ground began. But almost 2 months out neuropathy is lots better.... mostly in my toes and heels but sometimes when I'm tired I can feel those pin and needles in my calves. In my hands it's pretty much only in all my fingers but it's a lot less.
Hope.... breathe 🤗 They've all explained to me that cancer takes 3-5 years to get big enough to be detected so between my L breast and my L Sentinel nodes it's been brewing for a while 😥. I'm just thankful that it was all found now and not a year or two from now. As for the heavy chest yes it does get better but I have top pay attention to my body now as I have mitral valve prolapse now (from taxol/Herceptin). It wasn't there before or over the past 6 years ppt heart attack. But breathe.... not everyone gets screwed over by treatment!!
Lily I'm sorry it's all crashing down on you right now. You've got a lot going on.... please don't give up give yourself time to grieve... losing or hair is VERY hard emotionally. ((hugs))
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Taxol hasn't caused the nausea for me that A/C did, but it is still hard to deal with. Between the rash from hell, neuropathy, tummy problems, and it messing with your emotions, it is a tough go. I had THP this week and it has been a really bad week. My MO said it would be easier than A/C, and it has but just barely.
For those of you searching for head coverings, have you tried T-shirts? You can look for how to's on Pinterest or youtube. Search for DIY tshirt chemo cap. You cut the shirt under the sleeves. The hem of the shirt goes on your forehead with the rest hanging behind your head. Open up the back, cross it, and bring it over your head to form a roll at the front of your head. I add a scarf around the roll in the front when I want to get fancy! Just tuck it in and wrap it round.
Annie
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Lily, you're absolutely right, it is one nasty thing after another. Nobody should have promised you'd keep your hair. When I found out I was doing chemo I cried a ton just about that, every time I saw the word "wig" or thought about having to shave my head. I really miss my hair.
I got a wig but it wasn't comfortable so i just wear hats. I mostly see hats at the hospital.
You're going to be strong enough to get through this, because I have to be strong enough to get through this, and we'll do it together.
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Can I ask for your opinions on this please? I went to chemo 3 today, had blood tests first due to swelling in feet and ankles......waited over an hour then nurse came in and shouted at me "you need to drink more water" and told the other nurse to start the chemo. I said "no I want to speak to the doctor first"......Nurse 2 says "she wants to see the doctor now....." with a bad attitude.....they all got tetchy and disapproving.....
I waited ages, finally the doctor comes to see me in the treating area so no privacy......her opening line was "we cant carry on treatment if you cannot wait 3 weeks to speak to me, you can´t change medication every week, you are telling me you are worse every week" . I said no I have never said that I had a lot of nausea after week 1 and a lot of pain for two days last week that was not controlled by the medication and I want to change that.....I don´t want to stop I want pain relief that works.........she said your blood test results are good (first time anyone bothered to tell me that!) so we can do chemo. I asked why my legs and feet keep swelling up and are still getting worse one week on, the swelling is clearly visible in shoes and ankles and she said your kidney is fine.......I told her I drink more than 2 litres of water a day.
I then said could it be from the steroids i still take and that as I have less nausea now could I cut down on those and she said yes it could be so cut down slowly.....
i then said if my kidney is fine can I add in a secoind anti inflammatory as that seems to work better for the pain than opiods.......she said do you feel better on those and I said yes so i then suggested a second AI to take and she said you can try any of them twice a day......but all the ideas and initiatives had to come from me........
The doctor then left.....no chance to talk about hair....
Nurse comes over and says if the doctor thinks you can have chemo then you can........I said well I want to know why i keep swelling up and have pain relief that works, and she said "there are ways of asking for things.......2 and told me I acted like I was above them as I said no.......
I said well I want to know why i keep swelling up and to have pain relief that works and that I had not meant any kind of tone and that perhaps I should just sign myself out of treatment as it was not worth the hassle.......I wasn´t going to survive anyway........
Anyway she just did all the bags of stuff and did not speak to me rest of day or ask if i was ok or anything and I sat in the chair just sobbing in a public room I could not stop........the psychologist came in and said its clear there is no trust between you and the doctors. I said no there isn´t as I want to know why I am getting these effects...and she said well they are secondary effects from the treatment....I said no one ever told me
So I had a total melt down in the chemo room, we are not allowed to have people in there with us, and now I just feel worried and unsupported
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Sorry, aparently your doctors and nurses are not going to get sick of too much kindness.
Lily, trate to calm down. It is a hard treatment and the SE are difficult, but don't give up. In my hospital theres a woman who started chemo in a wheel chair. Now she go to her treatment walking. There is hope. I send you a kiss
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oh Lily I'm so very sorry for the way you are being treated!! Everyone seems to have their own agenda there...cranky nurses don't help any and I'm sorry but that Dr was rude!! (( hugs)) and cyber tissues for you
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Lily— all I can say is wtf? I have two people who go into treatment with me and I have never felt like I was asking for too much. I always see a doctor or the nurse practitioner before chemo and I always have the same nurse so we can develop a bond. I don’t know if there is another center you could go to, but that one definitely needs help! Sending hugs and tissues! And I have no idea why no one is explaining the side effects of this toxin they are putting in you, there are so many questions about this center. Is this same one when you had treatment in 2012?
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lily55 are you in another country? I can’t imagine being treated like that by the staff at the infusion center. I can understand your feelings. I’ve gotten so much kindness from the staff at the cancer center where I go. We are allowed to have our family or friends with us. Also a therapy dog would come in to calm everyone.
Doris
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Lily - can you change doctors? Chemo Center? This is horrible. It's not enough to go through cancer, but to have doctors and nurses who are rude and unhelpful is too much. And no family with you? No one to advocate for you? That is so wrong. Sending prayers for you.
Annie
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Seems very bad that you can't bring anyone with you. I've gone to all my treatments alone and it's not the norm at all, most people have at least one person with them sometimes a whole family. I also see the same nurse most of the time though the doctor every few weeks. I'm glad they got a psychologist to talk to you, that's the very least they could do. Maybe they can help with communication with the doctor and nurses.
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No privacy in the treatment room is also lousy. It's the same way where I am, probably for everyone here. You cry and cry and it's just a curtain and everyone's listening. I don't like that at all.
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Yes it is the same hospital as in 2012.........I have no choice of hospital, cancer department or Oncologist........and people with you have to wait outside, they can bring you in and help you out and get you drinks or something but its a long uncomfortable wait for friends for very little benefit to me as most of my friends dont speak spanish so cant intervene or speak up for me...I don´t have any family here......
Thank you for reassuring me I am not expecting too much....
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Lily- I’m sorry to hear that you’re going through such a difficult time. I can understand and relate. Ever since starting weekly Taxol, I knew something wasn’t right straight away. At first it looked like a cold/ chest cough. But after week 2, I felt worse. Started to have low grade fever and flu like symptoms with a heavier chest cough. Radio oncologist had mentioned that I needed to let MO know immediately of unusual chest cough. I mentioned pneumonitis to my MO. But she thought it was the flu. After week 3, had chest X-ray. Week 4, Radiologist said it was a slight infection. 1st round of antibiotics. But to no success. Week 5, Taxol #5, asked nurses about appointment with lung specialist. But was told only MO can decide. By week 6, finally appointment with MO again, still flu like symptoms with low grade fever and now breathing is near impossible. Requested appointment with lung specialist. But she said not necessary. Another set of chest X-ray. MO was adamant it was infection. This time much heavier antibiotics. That was Friday. I knew more antibiotics was not the solution. I had all the symptoms of pneumonitis. Yet, I was not being heard for 5 weeks after 2nd Taxol treatment.
Week 7, Tuesday getting ready for Taxol round 7, I could barely breathe with extreme shortness of breath. I looked so sickly and yet, the nurses still did not think much of it. Finally, my nurse asked if I needed to see the on call doctor. To which I said, of course! He canceled treatment and ordered CT scan. Which afterwards indicated indeed it was pneumonitis. It took them nearly 6 weeks to finally give correct diagnosis and the correct medication.
I also do not have much confidence in my MO. But will finish out my remaining 4 Taxol treatments at this hospital. Afterwards, I’m thinking of changing MO and hospital. We have to be advocates of our own health. And I need a good relationship with my MO.
Sending you lots of positive vibes and healing energy your way. Big hugs.
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Lily...I will chime in with the others. No one should be treated like that. I can't fathom it. When I was in treatment, I first had labs then talked with my oncologist and then on to the chemo room. I was encouraged to bring a friend to make the time go by quickly. I am so sorry to hear what you're going through. Where do you live? Are there no other oncologists/chemo facilities in your area. I would certainly be switching if I could.
Hope
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I guess I am lucky at my cancer center. 4 of the six rooms are private. 2 are two people ones and if all of those are full they have the garden which has 4 chairs but is open.... I am so sorry you can’t change centers Lily, but know we are here for you
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