Weekly Taxol for Stage 4
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Brigadoonbenson ... ditto, good luck on your scan results, so far taxol has held me steady since last September. Next scans in August & already getting nervous.
Just a thought, can you get the disks yourself from the other locations and take them where they need to go? I've gotten in the habit of always requesting a disk before I leave other locations, helps to cut down on this kind of thing.
Shazza, yes, I truly understand how you feel. Stage 4 does suck! Big time! I get real tired of hearing about the "cure," although I've come to learn through these boards, the "cure" is often not for long and often to stage 4! Breast cancer sucks! There is still so much not understood. At least there are more options for us than there use to be.
#32 completed today.
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Love the photo, brigadoonbenson! So beautiful and tranquil. Just what I needed to see this morning.
Shazza, I understand you feelings. I had a friend ask me at the weekend when I was going to finish chemo. Some, no most, people just don't get it.
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I have been thinking about this yesterday and today, that as much as I would like to look forward to stopping chemo, that it won't stop unless it stops working. That will then mean some other tx to keep mets at bay, possibly easier than chemo, but likely not. So when do I get my hair back? Maybe I won't. THAT is the most sobering thing for me, as it is the most visible indicator of being in treatment.
I used to see people with short hair or caps that I knew were in chemo, but never really grasped the nature of stage 4 vs early stage tx. Now I do. Its too bad that it takes a stage 4 diagnosis to really understand the limitations of the beast. Its like other chronic conditions, I guess, where you have to keep up your treatment or risk relapse. OK, that helps me feel a little less condemned, amd a lot more accepting.
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MameMe - That is the bottom line isn't it. The phrase "this is the new normal" is what we need to plan around.
Every day we have may be a good day. It may be a bad day. It may be the day that someone discovers a cure. I tell myself that regardless, it is a day and I am going to take it. If I live it to the max, great. If I waste it, that's okay too. You are right on.
The hair thing does suck. I am glad I live in the country on land with my kids. I rarely have to worry about covering my head. If I am going to the store, I wear a cap. If I am going to dinner I wear my wig. The truth is that I don't remember what other people wore, what their hair looked like, even what they look like when I am at the theater, restaurant, store. I am sure the same is true for them. Most people are not observant.
A lot of black women wear wigs and hats. They look beautiful and feel it is costuming just like jewelry, dresses or shoes. I never knew that until my friend showed me her accessories. I just thought she was gifted at doing her hair.
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MameMe, Just to say that I lost all my hair when I started taxol and I was on a 6 wk on/2 wk off regimen. Now that I am on a 'once every 3 wks' regimen, my hair has grown back. Maddeningly, though my eyebrows and eyelashes haven't grown back (yet), I am sprouting the odd vigorous facial hair!
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I have noticed that we all seem to be many different treatment schedules with taxol.
I am on every week at the moment but after tomorrow I am being moved to 3 wks on/2 wks off.
Aoibheann, You appear to have had your schedule changed at some point. from 6 wks on/2 wks off to, if I understand correctly, 1wk on/2 wks off.
Is there anyone else not doing weekly taxol? If so, what schedule are you on? Just curious.
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it does seem to be quite individualised doesn't it. I'm weekly with no breaks but a lot of girls seem to get a week off between cycles. My oncologist said that if I was still responding to taxol but began to suffer to much from SEs they could increase the time between infusions. I haven't had any problems after all this time so im not sure that will ever happen. I expect it to stop working first.
Springwatch are you having neuropathy problems or is the change just how your Onc likes to do things?
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Hi Shazza,
My onc said that he would at this stage have switched me onto hormone therapy if my bone biopsy had not come back TN. We are going to biopsy again in the future as the bone biopsy was very likely to have been suboptimal for testing and may have given an inaccurate result.
I think the reason for the change is to give me a break but also my Hb has been very slowly going down since I started treatment. I am going in very early tomorrow for 2 units of blood and will have my taxol afterwards. I then get my two weeks off and am looking forward to being re-energised.
I have neuropathy but the severity of it varies over the course of the week and he isn't worrried about it as the fluctuation in symptoms suggests that I will recover fully if or when taxol is stopped.
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I am wondering about others cycles of taxol. I am just starting ( July 8 ) and my schedule is 1x week for 3 weeks and 1 week off. Repeat , etc. the dose is 156mg.
When does hair start ? My side effects are fatigue , low blood pressure and pulse ,mouth issues , low reds and neuropathy. The neuropathy is in my feet and at night. Not really bad side effects.
Good news is that in only two infusions (today is number 3) my kidney function improved enough they cx my internal kidney stent surgery. The chemo is clearing out the cancer wrapped around the ureters which was backing urine into my kidneys. The taxol is working. Woot 👍💃😘
Anyway thanks all to your insights and info. You helped a taxol newbie. Thank you
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I just got switched to two weeks on and one week off, from weekly. Increasing neuropathy signs were the reason, altho those signs were not yet serious.
My insurance just sent me a note about authorizing a year of Abraxane. I had not heard that they were going to change my chemo, and will ask about that today. Has anyone heard much about it and whether it is tolerated well?
Hugs to all, Mame
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Diana50, Wow!! What a quick response! Taxol must be the one for you; love hearing these stories.
I'm 3 weeks on & 1 week off; been doing that since last September. My understanding is the dose is related to your weekly weight. I was offered 2 on & 2 weeks off, 3 months ago for QOL issues, but decided to keep the course as I'm still "stable" with some regression in liver mets. Next scan is in Aug. & I'm more nervous; hope I hear the "Stable guy" is still with me! Especially since my daughter gets married 2 weeks later & I don't want to be dealing with a new tx. If I'm still stable, think I will ask for the week of the wedding off, only for Aug., just so I can feel more energetic at the wedding. It's an evening wedding & I'm usually fast asleep by then. If I'm not stable, I will not start any new tx until after the wedding, which will be 3 weeks off, scary.
I've not heard of 1 week on only except for dose dense, which I understand is a much higher dose and much harder to deal with s/e. I wonder what a true mainentance dose would be, anyone know?
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Hi Mame,
I have been on weekly taxol or abraxane, it's the same with a protein molecule, since before Christmas. I had been switched off abraxane due to difficulty keeping my counts up, then I asked about going back due to neuropathy. Though really, the 2 seem to have the same side effects.
Anita
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MameMe - I had Taxol #10 today and it was easier. I didn't have the RLS with the Benadryl, just the inability to say words for about 10 minutes. I stutter as if I am drunk. My new tumor marker was 31 so even though some drs don't use that, my Dr. uses it and was high fiving me.
He also gave me Ritalin for my fatigue - 5mg tablet. We'll see how that works. He told me that my number one and if necessary only job each day should be to walk. If I get other things done better but do not overdue as it can make the steroid crash seem worse.
My hair has stopped falling out. It is thin but it is curly and I have always had hair that is straight as a stick. Strange.
It is good to know that the abraxane is so similar to taxol. Hope it clears up your neuropathy.
Synmom - Surely they can find a treatment alteration that can be delayed reworked to allow you the two weeks. Lots of people skip two weeks. Maybe the schedule MameMe is on?
Diana50 - good news about your kidneys. I hadn't heard about the ureter problem. This cancer thing is really indiscriminate.
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Brigadoon, when do you go in for your results? I liked the idea of getting the disc of scan results as soon as possible, and carrying them to the doctor appointment. Only if it would save time. Dana Farber had me do that with the disc for them.
I am getting CA15-3 for markers. So far its been a 45 in June amd a 43 in July. The range is ideally less than 32. I don,t know if it works but its reflecting the same thing my scans reflected, so far.
I had chemo yesterday and had a really sound sleep last night with no benadryl or xanax. Today I feel decent. I'll take it! Now I get next week off and then two more chemos is a row. Hope this works to keep ca activity at bay, because I can live with this routine.
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mameme
Glad you had a good sleep last night. I got my 3rd chemo yesterday and not so bad I go in today for fluids and magnesium. I can live with this protocol too. But it is early. My legs are restless at night from steroid. Half of me is sleeping and and the other half ( my legs) are in a running race. Lol.
I am just do grateful the two chemos I got cleared the cancer enough so no kidney stents. THAT was really bothering me. Whew. Caught a break.
Ok taxol girls . Keep on and keeping on
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Okay, so maybe I am not so enamored of the steroid high after all. Had okay day yesterday but HORRIBLE night last night and am drug out today because of it. I was really looking forward to the energy too. Doc gave me Ritalin to help with fatigue but I have to send the script in to ExpressScripts through the mail because it is a controlled substance and they have to have an original signature. Two week turnaround. If I get it filled locally I have to pay retail. $$$$$. Sure could use the bump.
Had my CT on Mon and when I was in the office Wed. MO said he might have the results before I left. Called his office today to check and they said it was an administrative day so he might not call back. Really? So my need to know if all the hard work I am doing is worth anything is trumped by some paperwork.?
You can see that when I don't get sleep I can be very cranky. Whine, whine, whine.
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Diana, That is great news about avoiding the stent. Really good news. Hope that the taxol works well for you and there will be no further mention of it.
Long, long day yesterday. In for about 8 hrs for my chemo and 2 units blood but the great news is that today I am pink, not white and have so much more energy.
I got totally confused about my new chemo schedule. It is 3 wks on then 1 wk off. When my oncologist said he was giving me a two week break, I thought he meant missing two treatments. I really need to pay more attention sometimes.
I am keeping my fingers crossed for every one awaiting scan results. My next ones are at the beginning of Sept.
Next week, I have an appt with the surgeon who put the rod in my femur and I am going to try and arrange for some physio to see if I can get rid of the slight limp I have been left with. It seems I can't go one week without seeing a doctor!
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Diana50 great to hear taxol is having a positive effect so quickly. Long may it last.
Brigadoon I found having my steroid dose reduced helped me significantly. While I don't get the high I don't get the crash either and my sleep is much improved. I feel a lot better without it and am going to speak to my oncologist about cutting it out completely when I see him on Monday. Good luck with the Ritalin I've heard it can be a great help
Springwatch I guess you are getting 2weeks between infusions so you were sort of right. It's all very confusing. Good luck with your surgeons appointment
Good luck with scans for everyone that's due. There seems to be quite a few. It's such a stressful time
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Hello taxol peeps
reading your posts are so helpful. i have decided the steriod high isn't worth the steriod low. really felt the difference this week. i can stop taking 20 mg at night prior to infusion but oncologist MAY lower dose at infusion. i guess if you have an allergic reaction it isn't a good thing. the steriod helps in that department.
what happened to me was the cancer wrapped around my ureters (moves urine from kidneys to bladder). that was why kidney stents were in my near future if the taxol didn't clear some of the cancer out. so, i did get some response after two taxol; and now i have had 3 so still praying i won't need stents. the kidney doc is watching me closely. but for now, things are ok. whew. escaped that , i hate having "tubes" placed in my body but i guess if necessary....sigh.
do you all get scans every three months? for those of you getting scans soon.....i am only thinking positive thoughts for reduction of cancer.
not noticing any changes in my hair. but, i have had only 3 infusions. this week coming up is my week off. my schedule is first three weeks of the month on...and last week is off. guess that is when i travel if i want to go anywhere. lol
you all hang in. saddle up.
hugs
diana50
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Bad news, diana: the hair happens fast. Or at least it did for me. One day I have hair on my head, the next day I have hair in my hand.
Good news: Abraxane (Taxol) worked really well for me, twice. Both times I had significant improvement after 3 cycles (9 doses). Am presently NED, after 3 cycles, although I did go ahead with five cycles. Hoping the same result for you.
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Alexgram
i have to chuckle, after i posted about my hair a few hours ago, i went upstairs to take a shower. i am like shampooing my hair and i get HAIR in my hand; yep...moving from head to hand.
. that made me laugh outloud. anyway, i am getting the familer feeling on my scalp that i had when i got TAC back in 2002 before i went totally bald. well, the goood news is i do live in the desert and it is HOT HOT here right now. 118 degrees. bald works for me in the summer. 
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alexgram
so good to hear you are NED right now. i have always believed in chemo; the TAC i got in 2002 kept me in remission for almost 11 years (which a horrible initial dx). so yeah, i say bring it on. i will be anxious to find out my TM's and scans. I am getting kidney ultrasounds every two weeks to make sure the kidneys aren't having problems with back up from the cancer. that is my marker; if the kidneys are working; i am in good shape. if i need stents; chemo isn't doing its job. so far so good. whew.
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my hair all came out quite quickly when I started taxol but then began growing again straight away. It took about 6 months but I finally got hair that didn't look like chemo hair. Very short but nice and thick, Snow White where I had been dark. I was fairly pleased with it and had ditched the wig. After a3 week break from taxol I restarted and the hair started coming out again. It's taken a lot longer this time it's very thin now and I'm having to hide a few bald patches. I should really shave it but a small part of me hopes it will stop coming out before it's too late.
My eyelashes and brows took a lot longer to come out and my lashes are finally back again but no sign of eyebrows, this is after 10 months of taxol.
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I have just had my 10th Taxol treatment. I still had enough to style where it looked like a full head of hair until #7. Then I started losing a lot on the top of my head. The sides and the back are still fairly thick (relative) and I still have a very thin layer on top. What I have has curled and It seems to have stopped falling out at the rate that it was. I have new growth around the edge of my forehead. Who knows what will happen next.
Remission for 11 years Diana50? That is music to my ears. I wish that for all of us. By then anything is possible. (Of course, I would be 82 as I have my 70th birthday a week from today.)
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brigadoon
Remission for 11 years stage 3. Became stage 4 August 2012. Was on letrozole till progression of mets to belly.
Shazza
Thanks for info on hair. I lost all of my hair on TAC back in 2002. Came back when tx ended and I ended up with great hair for 11 years. I will shave my hair if it blotches up or thins too much. Would rather be bald during tx anyway. Easier
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Diana50 - The history of your success already gives you a positive for going forward. That has to be a win in and of itself. It is these stories that give all of us hope and perspective.
This is my most treasured board because there is such history, optimism and unique community. I always come here first when I need strength, humor, support or have a question answered. There is always something here to help me.
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Diana,
My hair started coming out after 3 treatments and I ended up shaving it. I have a very, very thin covering of sparse hair now but not enough to pretend that the new look is one I have chosen. The sunlight reflecting off my scalp is dazzling. I wear Buffs most of the time but have a wig for special occasions.
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Springwatch I'm a big fan of buffs too but it's freezing here in NZ at the moment so I've moved on to the knitted beanie. Off to the oncologists office for my 3 weekly appointment this morning. Must get a moved on. Hope everyone had a great SE free week
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I wish I could pull off the beanie look. It has never worked for me. I will have to think about what I am going to do this winter without hair. My chemo first time was over the summer months and by the time the weather got cooler I had an inch or so to keep my bonce warm.
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I googled head coverings last night, liked some of the ones on a site called Just in Time. A little more volume than the average cap.
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