Weekly Taxol group
Comments
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Thans, Sinsin. It was the ovarian cancer thing that scared me. No one has ever said I had ovarian cancer. I am checking with the Dr. today.
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Brigadoon, I can see how you might be worried about that comment! Hope you can get some explanation of thqt from your onc. I am about to get my first comparative marker test results next week. How long since you began chemo in general, and what have you had so far?
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MameMe - Nurse explained that the C-125 is for both breast and ovarian cancer but some of the ovarian cancer measures are also looked at for breast cancer factors. That was why he said that. I was much relieved. I cried. Didn't cry at the misunderstanding but cried when I got the good news. Life is sure turned around.
I was on the AI's when I started having hip problems which my regular Dr and I thought were sciatic/lumbar hinge. I was in PT and one day she did an adjustment on me and things got worse real fast. (I think the adjustment cause a small fracture.) Got MRI and cancer lit up the screen. 10 hip rads and then tried Faslodex in combination with trial drug that didn't work. Next was Xgeva. Had terrible diarrhea that put me in the hospital. From that to Taxol. I have had 7 infusions (preceded by and anti-nausea shot, Benadryl, steroid with a Fosamax chaser once a month.) I am on a 3 on 1 off schedule. I have had very few side effects. Bone pain but some of that is related to the hip on left side that I use to use a cane for. It is getting better everyday but since I am not using a cane I have more stress on my knees and feet which is where the majority of my bone pain is. I am losing my hair but so far I have full coverage and it is coming out evenly. No wig yet. I also have ridges on the back of my nails that make me think I will have a nail problem soon. Dr. said to just keep them cut real short and that they will grow back quickly.Thanks for the support. You learn to roll with the punches with this disease but some punches can make you a little off balance.
I love the "there's got to be a pony in this s--t somewhere!" Heard that joke years ago but it so applies to this circumstance. I wish I had thought of it as my closer.
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Brigadoonbe, I think you are handling all of the issues you've faced remarkably well. And I'm so happy for you that you got blood work bc/ovarian cancer comment straightened out! Sometimes I think docs don't realize that we are literally hanging on to their every word and taking them quite literally.
And have to say that I love that joke "There's got to be a pony in this sh--t somewhere! One of my all time favorites and I use it frequently, especially now:-).
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You are so right MomMom. I once asked my MO in Boston how long I would have if I didn't choose the treatment he was talking about. The room was full of people and he mouthed "months - months". I can still see his lips mouthing those words and I am grateful for every chemo treatment and every month they give me. I am betting on the come and hoping California Chrome wins the triple crown! (Even if he/she ? doesn't I WILL not give in.
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Syrmom, yes. I had researched into glutamine and when I saw that there was claims and studies showing it to protect the cancer I mentioned it to my oncologist when I brought up the tingling. She agreed that there was controversy over whether it did or did not and she herself, wasn't sure. She felt it best I stay with our current course and if anything changes, we go from there but what would most likely happen is she would lower my Taxol dose.
Brigadoon, you're being a rock star through all this shite! When it comes to dealing with all this, it's easy to get confused over results and tests and don't even get me started over what I call, scanxiety. Ugh!! I hate waiting for scan results!!
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Brigadoon, I look closely at the pathology signatures from the women here, and I wonder about er+ pr- her2- being somewhat tricky and unpredictable. Its just an impression, but my second breast cancer was pr-, and that is the source of the mets, they think. That happened really fast, within 14 months, and that was with good surgery, radiation and some tamoxifen followed by some arimedex. I had a really low score for Oncotype, so did not do chemo at the time. I do not get it. You seem to be in a similar situation. Kind of slippery. I had a high proliferation rate on the path report, is that something you had as well?
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Regarding the l-glutamine; I decided to keep taking it - I do 10mg 2 or 3 times a day along with 100mg of b-6.
My sister and I asked about the "tumor protecting" aspect that we had read about - our docs said, we don't have tumors, so it's safe to take. We both had surgery prior to chemo. Those doing neo-adjuvent or treating for mets might NOT want to do the glutamine.
Gotta be careful sometimes of the info we get from the boards...
Have a great day everyone!
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Ugh! So tired today. I even took an hour and a half nap and I still have zero energy and just want to sleep. I hate the fatigue the most out of all these horrible side effects! It sucks not being able to keep up with my kids. And just seems to be getting worse. Anyone have some tips to help me combat this?? I still have 6 more Taxols to go. I already pop B-12 and D-3 supplements.
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Sinsin: I'm with you. I think I'm just one treatment ahead of you - - just finished 7 last week, 8 coming on Tuesday. I can't remember, do you get a break week? I feel like I'm struggling with fatigue more this week than ever, and that's just coming off a break after week 6. Every day I took a couple hour nap, although I was hoping some of it was due to not sleeping well at night.
Hope everyone is able to enjoy some part of the weekend. It's gorgeous weather here in MI, but I'm going to take a nap so going to have to miss some of it.
Take care!!
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Hi everyone,
I had the fatigue on Taxol too. I complained about it to my ONC about it a year after I was done. She told me exercise helps. I am feeling better now and I ended chemo Dec. 26th 2012. I have more pep than I did last year. I had two surgeries in 2013 so that wears you down too. Anyway it gets better with time. I wish I had all of the energy I used to have. Hang in there ladies.
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Hi,
I did well on Taxol/Herceptin for the first 6 treatments. Then I got the worst fatigue I have ever experienced. A few time I felt like I was going to faint. After two weeks of that my MO gave me a week off and what a difference that made. I felt so good!
Thursday I was back on schedule with treatment #9 and will see how I do this week.
Dee
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OK, So, I have had deep discoloration of the former radiation field over my l. breast, for the last two days. Its really weird, much more prominent than in prior weeks. I had Taxol on Wed. The radiation was done a year ago. The scar from a recent biopsy near lower ribs is all dark colored too. What's that about? Not itchy and not painful. Anyone have this happen?
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No energy today. Lazy or tired? Why do I always think "Lazy"! Old-fashioned work ethic/guilt syndrome.
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Mameme, it's my understanding that Taxol can cause darkening of the skin where previous rads has occurred. It sounds to me that that is what you are experiencing.
jhodro, I don't get an off week and I personally don't want one as I'd rather get this done as soon as possible. LOL
Brigadoon, I hear you! LOL I feel the same way. Currently my hubby is trying to clean the house and the kids and I are suppose to be helping and I just don't have the energy or desire to. SO, I told him I need to finish my coffee first. Haha!
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Hi all...,
Have been reading posts from afar, and finally decided to join this group! Thanks everyone for helpful info! Had a very easy time with AC treatments and went into weekly Taxol with an attitude it would be a breeze. No such luck on this one! I was started on weekly doses as I have an autoimmune disease as well, and neuropathy was a concern. Lost the rest of my hair (eyebrows and eyelashes) in this one and started neuropathy symptoms in hands and feet after 4th treatment. Not having fun at all looking at 9th treatment tomorrow and may stop . Looking at posts that refer to a break in treatments. Is this a common practice? It hasn't been offered yet. Neuro drugs not working and concerned with permanent damage..,
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Welcome Siestabeach! You need to bring up your neuropathy symptoms with your doc right away. Most likely he or she will lower your dose which should help. As to an "off week" I don't have any and I am doing 12 weekly Taxol infusions. Seems more like that is for those who are doing more than 12 or the dose dense infusions.
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siestabeach time off between cycles is really only done for us stage 4 girls who are doing it long term. Although My Onc in New Zealand hasn't offered me this option I did 33 weeks straight and then had 3 weeks off for unrelated health reasons. I'm back into it again now. I found that it is often the premeds causing more of the side effects than the actual taxol itself. I've had my antihistamine changed and my dex dose dropped significantly. This has resulted in me sleeping so much better at nights and my energy levels have improved. I'm still working full time and am a single mom to 3 teenagers.
I'm extremely lucky that I have no neuropathy at all even after 8 months of taxol.
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Wow, Shazza! That's great! Keep kicking ass!!
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Thanks, Shazza! They have been lowering dose a couple of times, both of Benedryl and Taxol. I am now having a hard time walking on my feet and right hand is becoming pretty hard to use, so this may be my last week.. I will know in a few hours. You have had an amazing course of tteatment with 33 rounds of this! You are my new hero!! Makes me think that I am wimping out at 9! 😊
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Thanks, Sinsin! Guess I won't count on a break, so it will probably be all or nothing today!
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When reviewing the pages on this board there is so much hope, bravery, love, support and humor displayed. Just this one, very specific focus. Multiply that by all the other boards with the same and we are a force. Doing this alone is hard but together we are "Survivor Strong" every day.
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Brigadoon, How's your energy today? its discouraging for me when I feel all shot out, but it usually lets up and then I feel more myself. What is your treatment day?
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MameMe - I stayed up until 12 watching episodes of Orange is the New Black and I slept in late. Low energy. Kiinda like I'm walking through pea soup. I have a short list of low energy tasks that I will play with. Things like sit on floor and wipe down bottom cabinets. Sit in garden and pull reachable weeds. Sit on couch and recover from other sitting chores with a cup of coffee.
I am reading a book about Joe DiMaggio. I will probably spend an hr in the hammock reading. That is a big chore because it takes me 15 minutes to get out of the hammock!
My treatment days are on Wednesday. This will be the last of my three weeks on and then I have one week off. It fell at a great time as my two youngest grands are flying in to spend two weeks with Bopcha and Pop-Pop. I won't have another treatment until just before they leave. :-
I may lose my hair while they are here as it is getting thinner though still evenly sparse. If I do I think I will make shaving Bopcha a game. Being boys they will probably think that is fun.
I am trying to figure out how I can smoke my medical marijuana while they are here. ;-) I love this State!
I forgot what your treatment day is? Do you have fatigue right away or does it catch up with you?
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I get chemo on Wednesdays, also. I feel better now as I head into the next treatment, but it used to be that I would be lively right after them and wiped out toward the next tx. Go figure.
Will having the grands visiting be a nice distraction? It sounds like it could be more than I could handle for that long a time. Not having grands yet, I don't know.
I am exactly at that same hair stage, thinning by the day, but still even enough to look like hair. I have an appt. Friday to get a couple of wigs styled by my wonderful hairdresser, and I am hoping she can make using the wigs a natural and sort of easy thing for me. The two wigs I have are too bushy at the hairline, and if they can be properly thinned, may work for me.
Its really warm here today. I took a two mile walk with my neighbor, and am still sweating a bit, sitting here on the sofa. I fare better in cool weather, but want to enjoy the summer and not complain too much! It sure is pretty.
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I've read on these boards how some of us get changes in our vision due to taxol; has anyone gotten floaters when they never had them before?
Called the MO as it put me in a total panic; getting scheduled for brain MRI and appt. with eye doc. Want to make sure this is not mets to the brain!! Ugh!
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SyrMom - I have floaters all the time. Started getting them when I was in my 50's. They come and go and a lot depends on how I feel. Getting anything checked out is good for the peace of mind but most people have them and they can come and go.
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ShazzaKelly - You are beyond amazing! Your courage and positive attitude shine through your posts. Good for you!!
Brigadonebe - You are also an inspiration to me and others. Love your matter of fact attitude, and happy you can get the medical MJ and that it works for you!! I'm also addicted to Orange is the New Black & managed to watch just the first episode of the new season - trying to save it:-). Yesterday, I was fortunate to be at a Piper Kerman event near me in Northern VA sponsored by the library system. She spoke without notes for an hour with an accompanying slide show and answered questions for another half hour. She's really into women's prison reform now. She's about 45 now, very attractive & articulate and actually sounded almost grateful for her experience. In answer to a question, she says she wishes her former lover (who turned her in) no ill will. She ended up spending 8 years in prison, whereas Piper got out at 12 months. Her book is out in paperback now.
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Thanks brigadoonbenson ... what causes them & is there anything that's done for them? Must indicate something is wrong.
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SyrMom - I believe (not a Dr.) that it is a separation of structure in the eye that comes with age. I was told this years ago and I believe this link will explain it. Not to say that it couldn't be something else but it is common.
http://www.geteyesmart.org/eyesmart/diseases/floaters-flashes/causes.cfmHope this helps.
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