Weekly Taxol for Stage 4
Comments
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Jennifer, I'm so glad to hear you're stable! (I'm fuzzy headed, too--literally, figuratively. But I'll take whatever bit of hair I can grow.)
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Good afternoon, taxol sisters,
Congrats and gentle hugs to all, expecially those with "fuzzy chemo heads"!
Unfortunately, my "stable season" (of 3 months) after 4 months of taxol has ended and blood tumor markers are increasing at concerning rates, so I will be having a CT scan this week and "state of the union" consult with onc next week.
Since I've already been through the usual anti-hormonal therapies and several chemo therapies, my onc is now suggesting Xeloda as a possible chemo choice. Anyone have pros or cons for that one?
I'm also submitting my medical retirements docs this week. So it is a time of difficult reality checks as to what I hope for for quality of life for the remainder of my time here on the planet.
Thanks to each of you for walking the path with me!
Shoshanna
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Puffins, your plate is so full right now. I hope the scan shows better news. I have not had Xeloda, but an infusion roomstage IV friend is having better results with Xeloda than she had with Taxol. Retirement does have positives, but I know it's a big adjustment, and is exactly as you described "a difficult reality check." Hoping things get better. A big hug and prayer for you from a sister taxol fuzzhead.
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There is a xeloda thread that is very helpful.m I was on xeloda prior to taxol and found it very easy. I would go back to it if I could. I hope you have a good meeting with your onc.
Pat0 -
Shoshanna,
I was on xeloda for a brief time prior to chemotherapy. It was easy (relatively speaking) and like Pat, I'd go back to it if I could. Hope it is your magic bullet. I've been on medical disability retirement for nearly two years and have not missed work like i thought i would. I told my school when i retired that I would come back and volunteer. Haven't been there once for volunteering though I do go back for special lunches and that kind of social thing. I have no trouble filling my days when I have energy and just taking care of me when I don't. Life changes are scary, I must admit, but retirement has been good for me!0 -
Shosanna,
Xeloda will probably be my next chemo too! I hear it's very easy, and you might get some hair.
Wishing yoiu the best,
Jennifer
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I have a question.....I had terrible SEs at the beginning of taxol then switched to Abraxine end of Jan/13 with horrible se's but now just had Abraxine yesterday and the se's are 80% less than at the beginning of this nightmare...so...does that mean the chemo is not working anymore?
I'm having a ct scan on Friday with results from onco on wed next week. I still have hercepton every 3rd week. My liver area is swollen....0 -
Jo,
I don't think so. Perhaps, your pre-meds were changed in response to your SEs? Check with your infusion nurse. They did that to me and forgot to tell me (reduced my steroids). Or, you've simply become accustomed to the SEs and are managing better, subconsciously?
A lot of times, the first dose of any chemo is a lot harder than any subsequent dose. Then you get a honeymoon period, before any other SEs start building up. With the Taxanes, the neuropathy takes a while to get going, but the first dose is notorious for bone pain and nausea.
It's most likely good news that your liver area is swollen, as the cytoxic effect of the Taxanes produces local inflammation where it is addressing mets. How's your color doing?
I have also heard that Abraxane is gentler than Taxol. I know it needs fewer pre-meds. How are you finding it?
Take care of yourself, sweetie.
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Hi Blaine, thanks for the info. No pre-meds, My color is good, with taxol I had an anafalactic reaction on the 2nd dose so he put me on Abraxine in mid-jan and whooooo the se's truly put me under! Lost 10lbs in 2weeks! I was sick thru and thru, he lowered my dose from 170mg to 140mg 2weeks ago as neuropathy in my hands and feet, fatigue, pains etc.
Now I have chemo nails, hurts! I know I'll lose them soon but other than that swollen liver area, back ache and some fatigue...I'm waiting for the other shoe to drop or it's (chemo) not working anymore......0 -
Try painting your nails with thick nail varnish. It really helps keep the nail bed less sore, as it seems to be a reaction to UV rays. I've had a few try to lift, but - on the whole - they don't hurt.
I also take 400 mg of Neurontin nightly to help with neuropathy, and that stuff rocks. I have the slightest bit of buzzing in my big toe, but that's it.
Here's to you and Abraxane having a wonderful relationship!
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I was taken off of Taxol after 8 weekly treatments and put on Abraxane. The only really bad se I have had with 3 weekly infusions one week off and 1 infusion yesterday is the taste buds issue. I am losing weight because everything I put in my mouth taste like shit!!! I have black toenails and fingernails from the Taxol. The neurothopy that I had in my right hand and foot are subsiding now. I feel fatigue, but can deal with that. I also have horrible depression since being on the Abraxane, but my onc says it is not coming from my chemo. I will be on the Abraxane for a long time according to my onc.
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I just had my 5 infusion of taxol yesterday and I spent mist of las night changing my PJ's due to sweating profusely. It was like when I was fighting the high fevers last month. Fist I would spike a high fever then when it broke I would sweat profusely. I'm going to check my temps after my next weeks infusion to see if I'm spiking again. Anyone have this after their taxol infusions?
Pat0 -
Pat,
No temp spikes for me.
. sorry you're experiencing this! Hugs!0 -
Frapp: I do have a minor version of that reaction that the infusion nurses ascribe to the steroids. I also get very flushed. What does your temperature get up to?
Macyhen: Does the depression ebb and flow over the course of the infusion period? If it is declining towards the end, and worst at first, it seems like you could point a finger at the Abraxane, or the steroids given as a pre-med. Check to see if you are getting any steroids as a pre-med, as with Abraxane, you don't really have to. If you are, ask for a decrease, as they are notorious for causing depression.
Even if your doc is right, and the depression isn't caused by the chemo, it does need tending to. Ask for a referral to a psychiatrist that can prescribe some medical intervention. A lot of ladies have used them to good effect. I used Zoloft after my primary diagnosis, and it did a good job quickly resolving my symptoms.
Seems like my whole post is steroid demonization. They do keep us from barfing our socks up, and protect our vascular systems from the chemo. My MO was part of the Taxol trials at MSK as a youngster, and he'll tell you stories about how they nearly didn't pass the trials on the Taxanes due to the side effects, and how great it was when they figured out the pre-meds.
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Thanks blainejennifer, my onc contacted my PcP and I now have a referral to see a psychiatrist for next week. I feel a little better after mo told me to double up on my Prozac.
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Macyhen,
Good, good, and good. This disease would send anyone's brain chemicals into a spin. Hope you get some relief soon.
Jennifer
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My temp, when on Doxil, went up to 103.9 when I was having the reactions I wrote about above. I don't know if I'm having a temp on the taxol as I haven't checked it but the profuse sweating made me think that maybe I was. I will check my next infusion on Wednesday to see. I just don't know what is causing all the sweating the eve after the infusion. Ill be curious to see if it happens again this Wednesday.
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Man, that is a HUGE side effect. Does your MO know? Sounds like an allergic side effect that needs some tamping down. Anything above 102 degrees, my Onc's office goes into a swoon. They demand to see me, or tell me to get my fanny to the ER.
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Frapp I had a sever allergic reaction to taxol with my second weekly infusion, they had to stop it halfway and switched me to Abraxine the following week.
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hi girls, for those who might be going onto xeloda, i was on it for 5 months, worked great for that amount of time but that was it for me. I had horrible neuropathy in my feet, the painful, walking on shards of glass one. but there is hope !!!!!! uggs...i lived in ugg slippers for five months, and dont let anyone tell you they dont go with dress clothes. they go with everything...lol
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I had my 6th consecutive taxol infusion yesterday and spent my evening again changing my sweat soaked Jammie's. I made sure to check my temp and did not have one so I have no idea what is causing this. It stopped abou 3am so I am now enjoying being dry. I guess if you're going to have a se this one isn't bad at all. Just make sure to change you're laundry day to coincide with the day after chemo. :-)
Pat0 -
Pat,
I'm up with ya! Ready to turn off the light but checked the taxol thread because I had forgotten to earlier. I was sweating tonight, too, and turned on the fan in our room. I didn't connect it to the taxol until I read your post. I'm not sweating now so it could be the same SE you're having. Had the first treatment of my 5th round. I get it three weeks on and one week off. It's low dose but is doing the trick. TM's are down and tumor is stable. Had an echo last week and that was good, too. I am really feeling blessed to be welcoming another spring season. The forsythia in our yard are looking so beautiful!!
My neuropathy has gotten a little worse, my hair continues to thin, my eyelashes are almost non-existent and I have lost hair on other parts of my body. I can't believe I still have hair on my head. Have a good rest of the week everyone!0 -
I was on Taxol for 8 weeks before my mo put me on Abraxane. I have more hot flashes now then I did with the Taxol. I keep a fan on me at all times and wear very thin gowns. I still get the flashes but they have gotten better. When I feel 1 coming and am at home during the daytime I start pulling clothes off and put the fan on me. I even did this when our outside temp was 19 degrees. The ceiling fans stay on. My poor dh walks around with a coat on.
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I don't get hot flashes per se, it's like my body forgot how to regulate and it will randomly start pouring out the water even when I'm cold. It does it the most on the evening after my infusions. I spend the night changing into dry pjs until 3am. I am on my 6 th or 7 th straight infusion. My doc says she will switch to the 3 on 1 off after my scans the end of April. Yesterday I was thinking I might ask for it sooner as the nuropothy in my feet is getting worse and I was feeling a bit down being the day after and I was still tired. I'm feeling much more normal this morning so guess ill hang in there. This really is an easy chemo. It's really my first. I had one dose of doxil but ended up in the hospital 3 times so was switched to taxol. I hope it's working. It seems to be awful slow to work. I think I have entered another dimension of my journey. Up until now I was working 9 hour days and other than having to take pills was not effected. Then small progressions 4 months after switching treatments and then enters doxil. I haven't been back to work since January and am applying for disability. I now have oxygen tanks in my house ans cand drive due to the meds. I'm having a hard time facing the fact that the situation has now changed. I'm still desperately searching for that river denial.
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Pat,
Which meds are you on that keep you from driving? The only time I can't drive is chemo day and that is because of the Benadryl which knocks me for a loop. The life changes can be hard to accept. I really thought I would hate "not" working but find that it has been good for me. I am sitting in bed with my 2nd cup of coffee. Two years ago I would have already Been teaching my second class. I would get home at 3 and collapse in my chair til time to prepare dinner .... Now, I meet friends for lunch, spend time on the phone with my mom or sister, rest when I need to rest! I go to the school only when they are doing something special (luncheons, showers, etc). It may take time but I hope you can find some joy in not working. Cancer takes away so much from us and working can be a huge part of our identity.0 -
Frapp,
Have you tried Neurontin for the neuropathy? I'm on 400 mg nightly, and it has kept my fingers and feet from buzzing all dang night long. The nice thing about Neurontin is that it ups the level of GABA in one's brain, so you end up feeling better about life in general. And, you take it at night cause it makes you sleepy. I love this drug, as it takes care of three problems at the same time.
I'm hoping the Taxol pushes the lung buggers back so that you can quit the oxygen. And what meds are impairing your driving? It sounds like you are feeling trapped at home, right?
The transition into not working can be hard, especially as it isn't driven by a happy event. Frankly, some days I'm so bored I could spit. I guess I could tidy up, but that's tedious too. Do you feel up to a phone volunteering gig? Our town has a phone bank of trained volunteers for Moms in crisis, and I'm thinking of volunteering. I want to be useful.
Take care,
Jennifer
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I am on OxyContin with oxycodone for breakthrough pain. I haven't used he oxycodone in a couple of weeks. I read that it is illegal to drive in this state if you are on heavy narcotics. I feel like I am getting use to the OxyContin and could probably drive but if I get in an accident, I think I would be in trouble. I was sometimes feeling dizzy but that has gone recently.
My mo put me on 300mg of neurontin just prior to starting the taxol. This past infusion has left some of my toes feeling numb and parts of the ball of my foot. At my last visit I mentioned that my toes were tingling and my mo said that if it got worse she would increase it. Well it got a lot worse after the last infusion so I increased it to 400mg on my own. It's not really helping yet and I'm a bit concerned as to how bad it's going to be after my next infusion. I don't see anyone prior to my next infusion as I saw them the last time. Ill let the nurse know and have her run it by my mo before this weeks infusion. Tis will be my 7 straight infusion of taxol. My mo said I will get a break after my scans on April 22. I'm dreading those scans and praying that the taxol is working. Not much has worked for me more than 4 month over the past year.
Your right....I'm feeling like I'm getting a bit of cabin fever. Since I can now walk a straight line maybe I will try to get out one day. But I have no one to visit as everyone I know is at work and the time evening runs around my energy is gone. I'll figure this out. Gues I wouldn't have made a very good stay at home mom. I need interaction with adults. :-)
Well, thanks for listening to my rant.
Pat0 -
hang in there Frapp!!!!! If you can get that one week off, it will really help. our bodies need that recouping time.
I am still working a few days a week, but it does zap me. Have no choice right now, maybe that can change. but it my LOTS of spare time I knit. It is amazing what I can get done, and it makes me smile and feel proud of myself. Hop you can find something, some hobby, you can do Frapp that makes you happy
Hi everyone else !!!!!
finishing up my 6th month!!! 2 months longer than any other treatment
blainejenny------how are you doing????? did I read your tm were going up???
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Yeppers, TMs went from 40 to 80 to 90 (4 week intervals), so we are at the watch and wait, as the PET scan showed some slight regression. They started going up when I went from weekly to three weeks on/one week off, so I'm back to weekly.
This time last year, my TMs were 2,600, so I'm trying to keep some perspective. My plan is to suck every last bit of cancer killing goodness out of each treatment. If I could, I'd be licking the lining of the IV bag.
I have a wacky notion. The only active mets I have are on my cervical spine, so I'm going to ask if some radiation might not zap the buggers, reducing my discomfort, and getting more mileage out of the Taxol. I see the MO Thursday, and that will be on the list of questions. What have y'all experienced with radiotherapy?
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Thanks Susan. I'll have to get out my needles and work on an afghan. Great idea. I couldn't do anything before cause I got very dizzy when I tried to read but that seems to have cleared up also.
Blainejen- I'm so sorry to hear about the potential progression. I'm going to chose to believe that it's just a little stretching from your cancer and the weekly taxol will knock it back down. Curious to see if your idea works.
Taxol has been a pretty easy chemo. I would hate to be nauseous and exhausted all the time. I hope I can stay on it for a long time. Thanks for the support!!!
Pat0
