January 2012 chemo

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited February 2012

    CatWhispurrer: my centre is in Australia (Royal Prince Alfred Hospital - Sydney Cancer Centre) and I am doing 12xTaxol after I do my final FEC of 3. So that regime is definitely being used globally and I think your MO was just brushing you off?



    I'm over a week past my 2nd tx and while I've had the same SEs as last time (oral thrush, nausea, tiredness) they have lasted a lot longer this time. I managed to work 3.5days last week but by Friday I had my shower, got dressed, burst into tears because I still felt so bad, and went back to bed for the day... :-(



    Also now wondering if this stuff really is working because it's supposed to affect ovarian function but here I am having my 2nd period since I started tx. I must have ovaries of steel I guess. I'll definitely be asking the onc if this is a problem or an indication that these drugs aren't working effectively for me. I'm going to search here and maybe start a thread asking if this has happened to anyone else.



    Hugs to all of you!



    regards Jenn

  • rachelvk
    rachelvk Member Posts: 1,411
    edited February 2012

    Jenn - I had periods (unusual heavy and long ones, at that) after my first two treatments. I sort of held out hope that my ovaries would survive the ordeal (though I plan to have them out because I'm brca+, so it's not like I'll be able to wait the 2 years I'd need to try to have kids... I'm 43 already). However, after #3, I had a tiny bit of spotting and then nothing. I do know one woman who made it through with what her MO calls 'fiesty ovaries' because she never went into menopause. There's so much difference between all of us in terms of what SEs we face, so it's hard to say any one or two SEs prove the chemo is working. I've retained most of my taste, haven't thrown up and except for a week after each tx, my energy hasn't flagged too much - BUT I did lose my hair (well, most of it - some of it's hanging on), so that's proof enough for me!

  • annie3310
    annie3310 Member Posts: 111
    edited February 2012

    waitress169: so far, I'm finding AC #2 easier than AC#1. I'm sleepy and have some free-floating anxiety, but really, that's not bad. I'm day four post treatment, so it's looking good. I hope this means you're having an easier time of it with AC#3.

     Annie 

  • Kelloggs
    Kelloggs Member Posts: 965
    edited February 2012

    Rachel - love the new avatar!

  • Lumpynme
    Lumpynme Member Posts: 747
    edited February 2012

    i have a question- since we "pee" pink with A--should we be wearing a pad or dark undies/jammies?

    sorry if that question doesn't seem exactly couth but curious minds really wanna protect their clothes! since i was forced into menopause in 1999 due to hysterectomy, i don't have pads in the house! i don't mean to go into TMI but i really am trying to be prepared for monday!

  • ely136839
    ely136839 Member Posts: 30
    edited February 2012

    Waitress169: I have found # 3 to be slightly worse than #2. #2 was pretty doable and I only felt slightly off for a few days. This time #3 was on Tuesday and I am still feeling off. It's not horrible , but I been laying around for days. I have such a headache that the MO tried to address by lowering the dose of the Neulasta shot, but that does not seem to have worked. Also my stomach just feels off. I feel like I am wasting so much time by just sitting around.

  • Janetanned
    Janetanned Member Posts: 532
    edited February 2012

    Ely, Waitress - Tx #3 is hitting me a little bit harder than 1&2.  Now keep in mind that Tx #1&2 were fairly easy to do.  No real SEs other than fatigue and heartburn.  I've been working full time except for infusion days.  I had #3 Friday a week ago and I'm still feeling down.  Wednesday & Thursday were bad.  I felt 'bad' all over, no vomiting, but heavy heartburn, metal-mouth, sore and achy, headache, tired, runny nose, etc. If we weren't so short staffed on Wednesday I would have crawled back under the covers.  I pushed myself on Thursday also, but would have preferred to stay home in my recliner.  For the first time, I'm dreading the next (final) AC TX on Friday.  Fortunately, I have off the following Monday.

  • rachelvk
    rachelvk Member Posts: 1,411
    edited February 2012

    Waitress - I'm on TAC, and #3 was definitely the hardest. From the December group, it seemed as though 3 was hard. I really kept all my anti-nausea meds close by (but they worked at least), and I overdid it with work. Plan on giving yourself more time to rest up for at least the week after than you may have in the past. Once I made it throught that first week, I felt much better, though I do still find myself getting tired more quickly at work or after walking a good distance.

    Lumpy - I find I usually only pee pink for about five or six hours after the infusion. Still, if you're concerned, I'd definitely wear a pad. It's not just about the color - I read in one of the American Cancer Society brochures that pretty much all your bodily fluids (sorry to gross everyone out) are almost as toxic as the meds, so a pad could be helpful because you could change it pretty quickly if needed.  

  • Lumpynme
    Lumpynme Member Posts: 747
    edited February 2012

    rachel thank you!

  • PCBarbie66
    PCBarbie66 Member Posts: 84
    edited February 2012

    CatWhispurrer ~ Taxol 12x or 4x~ There is a Clinical trial by the National Cancer Institute NCI, "ClinicalTrials.gov" that was to be finished in January 2012, for a dietary supplement to help with Neuropathy SE's (but they have not posted the results, and probably won't before I hit my 12 Taxol in 3 weeks from now). They list the 4 or 12 week option as well as several other Chemo regiments. Chemical name: Paclitaxel. Brand Name: Taxol. They refer to it by the Chemical name, not Brand...thought I'd put that in there for you.
    Here is the link for that one.

    http://clinicaltrials.gov/ct2/show/study/NCT00775645?show_locs=Y&view=record

    Taxol is listed in wikipedia as an option with AC-T. Wiki states "AC-Taxol: AC given 3-weekly for 4 cycles followed by paclitaxel given either 3-weekly for 4 cycles or weekly (at a smaller dose) for 12 weeks" They list the reference material they received the information from...easier to link through Wiki if you want to do some long reading.
    Here is the link if anyone is interested.

    http://en.wikipedia.org/wiki/Breast_cancer_chemotherapy

    The potential for Neuropathy SE's and the lose of any "Fine Motor Skills" is a major concern for me, just like it is for everyone...if they happen, they should be gone or almost gone before the next infusion....

    been doing a little research on what is next on my list and have recovered enough to finally check the your posts...3rd was a bit ruff for me :-(

  • Kitchenella
    Kitchenella Member Posts: 279
    edited February 2012

    waitress.  So far. (day 3 my 3rd. AC is going about the same as 2.

    Peggy

  • NancyHB
    NancyHB Member Posts: 1,512
    edited February 2012

    Warning:  TMI ahead!  :-)

    I'm dreading next week's 3rd AC tx (Peggy, I'm so glad to hear your 3rd is going well!!)  I know the effects are cumulative, so I expect that that tx will be harder than the 2nd.  Day 10 was yesterday and I started feeling "normal" again.  I drank way more water this last time and took Mirilax and Dulcolax religiously, and avoided much of the constipation I experienced during the first treatment.  Instead, I've developed toxic bowel movements - can't describe it any other way.  My insides feel like I've got diarrhea, but my bowels appear softer than usual.  This has resulted in nasty hemorrhoids (I warned you!!) somehow. 

    Otherwise, I've felt pretty darned good for the last 24 hours, and am happy about that!  Interestingly enough my hair hasn't fallen out completely; I shaved my head and noticed that I have some stubble growing back in!  It's hard not to wonder, like others, if the chemo is working if my hair isn't totally gone.  :-)

    Nancy

  • Kitchenella
    Kitchenella Member Posts: 279
    edited February 2012

    Nancy I have the same bowel symptoms. But they get better as the 'bad days' go away.

    Peggy 

  • waitress169
    waitress169 Member Posts: 47
    edited February 2012

    Thank You Girls for posting

    Ac#1 was doable and I tried to put it in my mind that they all would be the same. The acid reflux after #2 was really painful and made every other SE feel worse but was still doable. I am trying to keep working several days a week . I bartend and waitress and love both positions. We get a regular customer base who have all been great to me but when you are tired and feel so crappy it isn't fair to them or myself to be working. So I am still looking for hope #3 will pass with little SE.

  • FLDREAMER
    FLDREAMER Member Posts: 166
    edited February 2012
    I've haven't logged on for a few days (been working from home and super busy).  I just caught up reading all the posts.  I've sorta switched to Feb group but feel a bond with all of you. Had my first AC on 2/2 and my next is coming up on 2/16.  I've been fairly well.  Ringing in the ears stopped finally.  I had one day of severe nausea.  Other than that, I sometimes wonder if the chemo is working as I've felt so good.
         

    Unwanted visitors:  I've been alone for years.  My extended family (nieces, etc.) NEVER visit me at my home, although I see everyone at birthday parties, holidays, etc.  Recently, my niece, her husband and their three children were going to drop in after they picked up the kids at day care to give me something.   (I didn't know how to say stay away!)    Note, I said after day care!  Plus, they've had colds recently.   And to top it off, she and her husband are nurses....he's a chemo nurse.  WTH?). My house is 360 square feet (yes, teeny!),  There is no room for even one visitor.   As it is, something came up and she cancelled.  I was so glad.  I feel sorta guilty for not wanting them to come over but geesh!

    My own two daughters and 15 yr old granddaughter have been very sick and have stayed away from me.  I miss them terribly and have been lonely.  

    I've been having weird dreams.  Of my mom who's been gone for many years.  Perhaps I want my 'mommy' again.  Some have been soothing, some just sad.

    When I went in for the Neulasta shot, I stopped in the hallway and stood there with a sense of absolute dread that hit me in the depths of my soul.  I felt like the little child (or pet) who reacts the minute they are near the vicinity of the place/people that 'hurt' them.  I know I'll probably feel this again on 2/16 when I return. 

    I have something VERY important going on the night of 2/16 and pray any reactions from the second treament that afternoon don't hit me that soon.

    A thank you to all who have posted.  It means a great deal to me.. 

  • rachelvk
    rachelvk Member Posts: 1,411
    edited February 2012

    Karen - I hope you're able to make that event on the 16th. I did feel tired after my 3rd tx, but I think if I had something to do, I would have made it through. Make sure you drink a lot and get a lot of rest the day or two before, and hopefully you'll be fine. Maybe they can up your steroids for the day... ;)  As for the family visitors, now that the immediate 'threat' has passed, can you find a way to talk with your niece about your restrictions? I'd put it that way - that your MO has told you to stay away from young children, period. I had to do that yesterday to turn down an invitation to an acquaintance's (not close, but a mutual friend invited me), even though it was after the kids would be in bed.

    Nancy - There's no such thing as TMI on this site (though I guess a warning is good if people really don't want to know!). I think I might have developed hemmorrhoids, although it hasn't been a major problem yet. Things were a little quieter this time around. I have my next tx on Thursday, so I suppose I should start the ducolax today or tomorrow to get everything at peak performance. I've taken Metamucil occasionally, and I think it helps.

    Waitress - Glad you've been able to keep working a bit. Just make sure you're careful if any of those customers are sick - tis the season... I've been thankful that I've been able to continue working for the most part, though even the short periods I've taken off make it stressful because it makes it hard to get everything done, and it's hard to delegate things out to others.

    Hopefully today's a quiet day here - catching up on reading newspapers, maybe a little cleaning. And I need to exercise. My motivation is flagging, and since it's too cold to enjoy a walk, I suppose I'll have to go to the fitness center and get on a bike. At least I can bring a book! 

  • FLDREAMER
    FLDREAMER Member Posts: 166
    edited March 2014

    Anyone else feel their post is small....until they submit it.  I constantly edit mine since they seem so big.  Oh well.  

    Thanks Rachel....and I know I just have to set boundaries for my friends, extended family and even my adult daughters.  Very hard for me sometimes.

    General Info (of a rather personal nature).  shared with good intentions, of couse.

    Herpes virus:  (of any type).  I received this 'gift' (never mind how) in 1988.  Knowledge acquired then indicates it can lie dormant for many years and is more common than many people realize. Chemo can bring to the surface (literally) something we never knew we even had.  Don't ever blame anyone for it though.  And just treat it as your doctor advises and get on with it.  It is very manageable.

    Pads:  Peeing pink didn't last very long but if concerned, basic panty-liners can provide a semblance of security.

    Wipes:  If you have leakage (common among women after childbirth but also older women (I qualify for both), just keep a few wet wipes in a sealed baggie in your purse or jeans pocket. They are handy for personal hygiene when you're out.  IF the chemo urine is toxic, this might prevent any irritation.  Or keep some soothing cream / Vaseline with you.

    Skipping chemo:  I'm 69, supposedly the surgery got the cancer.  I have rheumatoid arthitis, fibromyalgia, a triple by-pass in 2004 and three stents since then.  I very seriously thought why bother with the chemo.  BUT, my two daughters (although grown) have many health issues and are on the road to recovery. My 15 year old granddaughter has her own struggles with a chaotic family.  I will go thru whatever I need to do in order to be here for nothing else then to continue to give them my moral support as they struggle with their own journeys.  More importantly, I'm not ready to be on the other side yet.  I intend to battle this, retire and at least enjoy another vacation on the beach somewhere even if I can't actually move there!  So, I'll fight this thru to the end. (remind me of that when I'm not feeling so well. lol). 

    I haven't seen these issues addressed so i thought I'd share.    

  • rachelvk
    rachelvk Member Posts: 1,411
    edited February 2012

    Karen - Those are some great points! I just finished responding to someone in her 70s who is thinking she might come to the opposite conclusion - but each one of us needs to make our own decisions. Regarding the herpes - I had a year of abnormal pap smears because of HPV, which hasn't seemed to go away like it should, so I can sort of relate. I was told it shouldn't get any worse during chemo. Guess I'll find out when I get my next pap. And since I need to get my ovaries out and have recently learned I have a polyp in my uterus, I'm considering just having the package deal go clean up all the loose ends...

  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited February 2012

    Thanks everyone for repsonding about 12 weekly paclitaxel versus DDx4.    I have JennT28 in Australia, and PCBarbie, Seacretgardn, Waitress169, and Ely in NJ, plus DianeNMil in CT, Nicol012 at UNMC, Kitchenella in Israel all getting 12 weekly taxol and NancyHB in MI "was" going to get 12 weekly before randomized trial.    Are all of you in NJ going to the same cancer center?   Anyway, I think this proves that MD Anderson is NOT the only place doing weekly paclitaxel.   I just wish I could find the data/research that proves one over the other.    I see a few getting DDx6 taxol which I had not even seen before.  I may push my MO to tell me why he chose the DDx4.

    I can also relate to the sore "behind."   I am trying to pamper it with a little baby powder.   I had my hubby shave off the rest of the stubble on my head today.  Otherwise, a slow day and feeling "out of it."   I have several of my family that wants me to call them but I am just not feeling up to it and I'm feeling really bad.

  • Nico1012
    Nico1012 Member Posts: 1,492
    edited February 2012

    Cat ~ at the risk of being very bold (bc does that) I would ask your onc to show YOU the evidence that four times dosing is superior to 12 times. It is your right to know what his/her research is and on what data have they based your treatment plan. I remember a mini-meltdown I had in my oncs office when in a very loud voice I said, "For heavens sake I have CANCER, I have a right to know everything you are even thinking when it comes to my treatment plan." Fortunately, he did just that. As I recall his preference for the 12 times dosing of Taxol came from his own studies and studies at UCLA , UCSF and MDA. That was good enough for me.  I'm not following your oncs reasoning that "only MDA does that" because  it just ain't so.  It's their job to be informed of the most recent research and follow  at least standard of care and better yet, cutting edge treatment protocols. When I started on my bc journey I decided that I would have to get "real firm, real fast" and let the medical professionals know that I intended to be an active participant in my own treatment plan. Proactive became my philosophy. And that ends my soapbox. For what it's worth. :) Nico

  • CharB22
    CharB22 Member Posts: 310
    edited February 2012
    Waitress169 - AC #3 is about the same for me as #2 - sleeping alot and staying ahead of the nausea with the meds has been key.
  • SleeplessIn
    SleeplessIn Member Posts: 114
    edited February 2012

    Catwhispurrer,

    I am also getting the 4xDD Taxol after AC. I, too as wondering about the difference between the 4xDD I was "prescribed" versus the 12x weekly treatment. After looking for info and studies to support that either was "better" I couldn't really find anything, So I questioned my ONC at my appointment last Thursday. She is the head Onc at the Seattle cancer clinic I am being treated at (which is rated #5 in the country). She told me about a study that has not yet been published officially, but presented in San Antonio the year prior, and that the 4 x DD (bi-weekly)  was just as effective as the 12xweekly.

    Below is a study comparing 3 week Taxol and Taxotere with treatment every three weeks versus weekly.

    "Overall, paclitaxel [Taxol] caused fewer side effects than docetaxel; however, peripheral neuropathy (grades 2, 3, and 4) was highest in the group treated with paclitaxel once a week."
    The report of this trial was published in the New England Journal of Medicine in April 2008.
    Publication: Sparano JA, Wang M, Martino S, Jones V, et al. Weekly paclitaxel in the adjuvant treatment of breast cancer. New England Journal of Medicine. 2008 Apr 17;358(16);1663-1671

    Hope this helps. If you can find anything else, please let me know.

  • TryingToSaveMom
    TryingToSaveMom Member Posts: 16
    edited February 2012

    Yet another update about mom. Her first AC chemo on Jan. 19 caused serious side effects (acute pancreatitis and gastro intestinal bleeding) and everytime she's almost back to 'normal', her enzyme and WBC levels go up and down like a roller coaster. Three times the second AC chemo has been scheduled and then had to be cancelled due to the same problems redeveloping. She had more blood tests and another CAT scan last week. Her oncologist seems to be getting frustrated and now they're planning an endoscopy this week to see if chemo may have caused small stones to develop in her previously healthy pancreas. Not sure what they'll do if they find them but once again everything is on hold. Also not sure what the oncologist will do about chemo. Mom is triple negative and there are no other chemos that work for TNs (other than the AC / T dose dense) and it's been nearly a months since mom's last chemo. It's been a very exhausting and trying month for mom and all of us in her family.

  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited February 2012

    Nico - yes, I think I need to get a little more "bold."   I do believe the new "standard" is DDx4 but it just seems that there is more MO's going to the 12 weekly because of fewer side effects and a chance that if might be a little more effective.  What bothers me is that I haven't seen that data or research in writing......

    Sleepless - I did see that study from years ago and I think that is why they don't do taxol every three weeks anymore.   What I am trying to figure out is why/who decided DDx4 (every 2 weeks) is better or as good as 12 weeklies.   All in all, you are getting only 8 weeks worth of taxol not 12 weeks too.   It is interesting that a few people and studies are now getting DDx6 cycles which would be the same as 12 weeklies.

    TryingtoSaveMom - Did you see my post and links regarding Milk Thistle?   I hope your mom can get the okay to start taking it.   I should know if it is helping my liver enzymes when I get my bloodwork tomorrow.

  • Janetanned
    Janetanned Member Posts: 532
    edited February 2012

    Trying - How frustrating!  As much as we hate this treatment, I think we all agree that we want it to proceed.  Gentle hugs for your mom!  Hang in there!  Ill add you to my prayer list!

    Nancy - I hear you about the 'toxic bowels'.  I mentioned something to my MO about the change in color, smell and 'presentation' and she looked at me like I was crazy. So I thought it was just me.  Phew!  Not so crazy after all!  Anytime I begin to think that the Chemo isn't working, I just think about how my poor normal body isn't functioning normally anymore.  I feel like my insides are just raw! Oh, I have some peach fuzz left on my head too.  Most of the serious stubble fell off.  But there is lighter fuzz all over my head that is hanging on.

    Karen - I had a dream about my mom this weekend.  She has been gone 30 yrs now.  She always becomes part of my dreamworld when I'm struggling with something.  This week has been tough and I must be 'needing' her now.  I always feel a little sad, but better after these dreams. 

     I think after going through this dreadful process, we all will have things or places that move us.  I was ironing this afternoon and began to feel sick. This is my 'good' time so I shouldn't have any nausea.  I realized that I was ironing a flannel shirt that I always wear Dr's appointments since surgery and to chemo. I guess that shirt will always hold bad memories for me.

    Interesting point about herpes.  I wonder if we should be more careful about exposing ourselves to these types of viruses (cold sores etc).  My students are not the most careful about washing hands and chewing on pencils.  I have a bag of pens and pencils that they are not allowed to use, but I still find myself using calculators and rulers that thev'e handled.

    Rachel - How do you like your new wig?  Your avatar looks great!  Hope Thursday goes well.

    Tina - I'm going to ask my MO about my tx plan.  I'm getting 4dd taxol after 4 dd AC.  I'll see what she says.

    Would anyone like two scarves I have that don't fit?  My head is just too big.  One is a nice grey and the other is multi-colored.  I'd be happy to send them out.  Just send me a pm with your address.

  • FLDREAMER
    FLDREAMER Member Posts: 166
    edited February 2012

    Question regarding our profiles:

    Several posts back, someone suggested we enter our treatment regimen as part of our signature status info.   On the profile page, where would we enter that?  I tried entering it at the bottom of some info but it only showed up on that particular post, not all of them.  What am I doing wrong? 

  • Janetanned
    Janetanned Member Posts: 532
    edited February 2012

    Karen - Click on MY Home. Click on Edit MY Profile (on left).  Scroll down to Signature (last box)and click.  Enter info there. Click save.

  • rachelvk
    rachelvk Member Posts: 1,411
    edited February 2012

    FLDreamer - You can add it to your signature - but it does only show up for new posts, not the old ones. I had the same reaction when I added mine.

    Jane - I really do like my wig. I almost feel guilty for liking it so much. I ran into someone this evening who was raving about how great my hair looked... when did I have that done... etc. I went along initially ("Oh, just recently") but finally told her I was going through chemo. I guess right from the start, when I realized I was going to lose my hair, I decided it was going to be the time to experiment with being a redhead, and I guess it's working out well. And I understand about having new reactions to things/places. BC definitely creates new markers and milestones for us. I'm sure my chemo bag, which I got years ago and 'repurposed,' will always have more meaning in the future when it goes back to being a cosmetics case/travel bag.

    catwhispurrer - Good luck on getting the issue settled. I've head a lot about the varying opinions (I thought I had heard the consensus was that they work equally well) but since it's not my regimen, I haven't paid enough attention to offer any advice.

    Tryingtosavemom - I hope the doctor can find some ways to adjust her treatment so she can go forward. I'm TN too, so I understand how important chemo is. 

  • FLDREAMER
    FLDREAMER Member Posts: 166
    edited February 2012

    Janetanned & Rachel

    Thanks, I've added my treatment regimen.  I like it being part of the signature.  Good idea, whoever first suggested it on here.   

  • TryingToSaveMom
    TryingToSaveMom Member Posts: 16
    edited February 2012

    Thanks for your replies and kind words Cats, Jane and Rachel. Cats I saw your post about Milk Thistle and will mention it to mom and her oncologist. Actually the oncologist called today ( Yes on a Sunday believe it or not!) and says they'll do an endoscopy to see if there are any pancreatic stones - if there are and they're small they can remove them fairly easily without surgery she says. She also said last Fridays tests show mom's enzymes and WBC are finally stabilizing and AC chemo treatment number two should be able to go ahead finally - likely later this week.

    I'll think good thoughts for all of you guys too. Hopefully everyone's week will go well and no bad side effects or setbacks for anyone.... and if scientists or researchers are reading out there - hurry up and find a cure so no more people have to go through this stuff!

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