April 2010 starting chemo

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  • mama33
    mama33 Member Posts: 1
    edited June 2010

    I started chemo on 4/20/2010 ( AC x 4, 2 wks cycle) and just started Taxol on 6/16/2010  ( x 4, 2 wks cycle)

    I have been getting very bad headaches with AC.....Taxol which I started last week is much worse than AC. I am having all sorts of bone and muscle flu-like aches.  The pain is even moving down to my groin and the pelvic areas.  Any one else having the same side effects with Taxol?

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  • Emme
    Emme Member Posts: 205
    edited June 2010

    Mama-

    Are you getting shots after your treatment to stimulate your neurofil production?  When I was getting taxol, I injected neupogen for 5 days after my infusion.  The pelvic pain was from the injections stimulating the bone marrow growth in the pelvis.  I had bone/ and muscle pain on day three and four  the worst.  I was getting weekly infusions.  I hope this information helps...ask your Oncologist what you can take for pain.  Don't be afraid to ask for something strong...so the pain doesn't wear you down.  I wish you luck and ease of SE.  Your on your way to good health.

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  • Julia123
    Julia123 Member Posts: 21
    edited June 2010

    Kelli,

     I can understand how you feel, after my first A/C I had very serious thoughts about not continuing, it really knocked me for a whammy. All four were bad, but by far for me it was the first and the last that were the worst. With the last, it was partially the realization that I was recovering more and more slowly with each one, and the fear that I would just be a puddle in the floor by the time this was all over! 

    But, I just had my second dose dense Taxol (every other week X 4) this past Wednesday, and while I understand that the weekly Taxol regimen is a lower dose and even better as far as side effects, I have to say that while there are some new, different little weird things with Taxol, the truly debilitating weakness/sickness/fatigue is over after a few days (as opposed to veering ever closer to the full two weeks as time went on with A/C). So, yes, it has been easier for me so far. I realized after a yucky few days and about a week after the first one that - wow, I felt genuinely 100%. And, I would never have had the concentration and energy to be typing on here three days after any of the A/C treatments like now. :-)

    Mama33 - I also have the flu like aches and shooting pains down the side of my back with Taxol. It's a common side effect of it, whether you're still getting the Neulasta or Neupogen shots or not (I no longer am with Taxol). I agree with Emme, get strong pain meds from your onc. I have oxycodone that I take on those days. We should not have to suffer any more than is absolutely necessary!

    Say, has anyone asked their onc yet why some of us are on weekly Taxol X12 vs. every other week X 4? My chemofogged brain totally forgot to ask this question last Wednesday!

     Also, anyone else losing their eyebrows and eyelashes? I noticed yesterday I was losing eyebrows - not eyelashes yet, knock on wood.

    And, anyone else having regular hot flashes/night sweats now? LOL I am 44 and wasn't yet menopausal, but I guess the menopause they predicted is fully in progress.

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited June 2010

    kad22: Kelli, it's really normal to feel like one more treatment is just too much to ask.  I know what you mean about how we weren't sick (or thought we weren't) before all this started, and it seem like it's the treatment that's making you sick. But deep down, we know that this is our best chance to take charge and get rid of the beast. You can push through this and make it to the other side. After my last AC and before starting the Taxol, I felt the same way, but I knew I wouldn't get done if I didn't just keep going, come hell or high water. And now I'm that much closer to the end. Just think one day at a time.

    I agree with some of the others that Taxol is mostly a better experience. The mouth and taste issues seem to be gone (for the moment), the fatigue is shorter, and I haven't had nausea.

    The SEs I've seen with Taxol are some muscle pains (like a bad body ache from the flu) and some blurry vision that seems to come and go. Even with that, I'd say it's much better than the AC.

    mitymuffin, like people are saying, it's normal to have one cycle be very different from the next. I think the first cycle of AC is sometimes hardest just because you don't know what to expect, especially with nausea. After a while, you'll get to know the tricks that help, like people have already mentioned: small snacks every couple of hours (keep something in your stomach, even if it means eating a bit if you wake during the night--that's when I was more likely to get quesy), keeping hydrated, avoiding things with really strong smells, eating what  you feel like rather than worrying too much about "balanced meals," etc. And with any other side effect, feel free to ask your oncologist or nurse, because there's likely to be some kind of drug that might help. If one doesn't work, try another, and don't worry about trying to tough it out. For me, Emend was probably the biggest helper, but I just had it for the first two days after treatment, along with dexamethasone and zofran. After day 3, I just took zofran as needed, and it seemed to do the trick.

    The toughest thing for me has been fatigue, because there doesn't seem to be much you can do about it other than sleep when you feel like it. There were a few days where I settled down for a nap around 8am because I'd wake up early and be worn out already.

    Emme, you mention that you're having a MUGA scan soon. Did you have one before starting treatment as well? I had one before the AC because of the heart risks to that, but I haven't had a follow-up. I wonder if I'll get one after Taxol is done.

    mama33: I also had flu-like muscle pains starting a few days after my first Taxol. I do take the Neupogen shots, but these pains started before that round's shots (I usually do the shots on days 5-9). The oncologist warned me there could be some pain. It was more generalized than the Neupogen pain, which is throbbing and in specific areas for me (pelvis/low back and sternum especially) . So I just started a day or two earlier on the vicodin/hydrocodone I use for the pain. It takes the edge off and helps me sleep, and I only need it for the worst days in the middle of the cycle.

    Julia123: I haven't lost eyebrows or eyelashes yet, but I guess I probably have that to look forward to in this next cycle (Taxol #2). I picked up a kit at Sephora to help draw on brows--we'll see if it just looks goofy.

    I've been having hot flashes for a few years already (I'm 50), so I'm no worse off than before. I'm hoping the chemo brings a quicker end to things.

    Hugs to all. I'm off to do Taxol #2 tomorrow. My #3 would normally fall on July 5, but I don't know yet if that's a holiday for them. I hope it doesn't get pushed out too much. I'm doing dose dense, so I'll only have two more at that point and just...want...to...be...done.

    Karen

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  • Georgigirl
    Georgigirl Member Posts: 14
    edited June 2010

    Hi...I am posting for the first time. Have been a bit of a lurker for a while and have found this site so informative and positive. Anyway, I started neoadjuvant chemo April 27th so please add me to the list. My schedule is 4 rounds dose dense AC every 2 weeks, then Taxol weekly for 12 weeks, then bilateral mastectomy, then 6 weeks x 5 doses of radiation. I just finished the AC and am so glad. I had lots of nausea and am so hoping there will be minimal with Taxol (as I've read). Keeping my spirits up so far.    Georgigirl

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  • susiesue
    susiesue Member Posts: 68
    edited June 2010

    Karen

    I had a MUGA test right before starting chemo, then I had one between AC and Taxol and will have a final one after the Taxol (all chemo) is finished. Along with the MUGA, I had an EKG.

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  • SGJ05
    SGJ05 Member Posts: 73
    edited June 2010

    Question for those who have a port. Have you noticed it moving closer to the surface? I have a power port and it seems much closer to the surface then it was a month ago--it even hurts a tad. Anyone else noticing this? I am half tempted to finish my chemo. and have it removed. The only problem is I need Herceptin for another 8 months--what to do, what to do?

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  • toughmom38
    toughmom38 Member Posts: 79
    edited June 2010
    SGJ05- My power port has also been causing me pain recently.  Had it put in 3/25/10 and after about two weeks I got used to it.  It's now sometimes sore to the touch and I can really feel it's there if I lift my arm straight up in the air.  I finish the TC part of my TCH on 7/22 and I'm considering having it taken out after that and just dealing with the IV in my arm for the 11 Herceptins I have to have after that.  I know it's easier to leave it in and my oncologist recommends me leaving it in, but he's not the one who has to look at every day and be careful not to bump it, is he?  At my last treatment I mentioned the pain and he said as long as it's not red and swollen around it all is OK.  He felt around it and said everything was normal.  But I'm with you, which is the lesser of two evils?  Leave it in or deal with IVs?  I'm not sure which one is worse...
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  • Emme
    Emme Member Posts: 205
    edited June 2010

    Well I had my last AC friday.  This afternoon I got the bad taste in my mouth and the feeling and taste that I had been sucking on an old wooden spoon.  Ohh I was so hoping I would get thru this round without the taste issues I had with the taxol. I am so very tired. Fluids tomorrow , they rock! I am looking forward to the next few weeks turning around and hopefully feeling stronger.

    Karen-  I had a muga in December and I requested one now that I am done with the AC because I have to have herceptin which can be troublesome to your heart as well.

    SGJ05- I have had port issues...when it was placed as it healed it tipped...I have a power port too. The first time the accessed it I had to have radiology access it under flora after they tried 6 times in the infusion room.  Shortly there after I lost 40 pounds when my gallbladder issues wreaked havoc on me....miraculously my port was fine!  That was in feb.   This week after my last expander fill, it is tipping again.  I have a year of herceptin as well....

    Ask for a prescription of Emla cream, It numbs the area prior to being accessed.  This helped me a lot.

    Welcome Georgigirl---Sorry you had to come to us, but so glad your here. This site has been such a help to me.  I am so thankful for the women here.  I always feel this is a safe place...where everyone understands what I'm going thru.

    Hold tight...

    Emme

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  • SGJ05
    SGJ05 Member Posts: 73
    edited June 2010

    toughmom38--Well thank goodness I am not alone, thought I was losing it, LOL:) We are really close on our treatment timing as well. I had my port placed on March 24th and will be done with the TC portion of chemo. on July 15th, then Herceptin until next April:) I am going to talk to my oncologist at the next appointment. I am sure he will want to keep it in, especially since I can't use my right arm for IVs. However, if it continues to bother I am not sure what I will do? Funny how something that is supposed to help can be such a major pain too!!

    Thanks for replying:) I am excited to see you are almost done with your treatment too!!!!

    Emme--I have the EMLA cream and use it for every treatment:) I had it accessed a couple of times without it--OUCH!! Sorry you had trouble with yours too. Congrats on being done with the A/C portion of chemo., sorry about the taste disturbances. I have had major taste disturbances and metal mouth; I chew Trident Spermint gum after I eat and it has helped a ton, perhaps that may help you too.

    Diagnosis: 1/25/2010, IDC, 2cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2+

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  • peacelovedogs
    peacelovedogs Member Posts: 57
    edited June 2010

    I have to say that I am surprised by how I feel on Taxol and Herceptin.  I had treatment on Thursday.  Friday I was good until late in the day.  I went to bed at 730.  Saturday I slept all day long and pretty much felt like crap.  Today I am better but my muscles are hurting.

    This IS easier than AC.  No doubt about it!  It still sucks but the time that it sucks is so much shorter. 

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  • tpcjkk
    tpcjkk Member Posts: 67
    edited June 2010

    Hi,

    Julia123 - My eyebrows have thinned, and so have my eyelashes.  I think it started happening with the last AC, and has gotten slightly worse with the two Taxol's I've had so far.  I'm on dose dense AC & Taxol (every 2 weeks).  I do fill in the eyelashes with brow powder (I use a kit by Anastasia), and use an eye pencil to line my eyes, but overall I would say the brow/lash loss is less than 20%.

    I'm 42, and haven't had hot flashes, but I think my periods have finally stopped.  I had two periods after starting AC and some spotting.  

    ~Julie 

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  • lexie5
    lexie5 Member Posts: 32
    edited June 2010

    Hi,

    I have started having acupuncture for SE from AC.  I had bad bone pain from the Neulasta shots and acupuncture got rid of it.  It did nothing for the nausea but did help with the constipation.  Give it a try.  I also went to a holistic doctor and got supplements to help with the effects of chemo on my body.  This was all ok'ed by my oncologist.  I'll try anything to make it better. 

    Lexie5 

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  • kad22
    kad22 Member Posts: 191
    edited June 2010

    Well a week and 3 days later and I finally feel somewhat normal - yeah. Thank you again to all the words of encouragement - really needed to hear them.

    Julia123 - I did ask my onc. why I had to do 12 wkly taxol and not the 4 dd every 2wks. He basically said it really came down to wear a person lives!! He said here in the midwest they like to do the 12 wkly and on the coasts the 4 dd. He said with the weekly we don't need the N shots that cost like $3500 each! He did say insurance will cover the shot but they perfer to do the weekly here  and for mebecause they feel that they are not giving my type of cancer,Triple N, the time to build back up between Taxol treatments. Not sure if that was a bunch of bull or what but that's what he told me! ;-)

    My eyebrows seem to be thinning. Have had periods still throughout treatments but I am 37 - so don't know!

    Not sure what to say to you all about the ports - I refused to have one put in and was doing really well with the IV everytime up to this last time. The nurse thought this may have happened, not finding a vein, because I was so tense! I may need to take something the next time I go to help me get through it all! Sorry to hear you are having these issues though.

    Why does this have to be soo tough on us all? Sometimes I just don't understand...

    Wishing everyone a SE FREE week and a happy first day of summer!!

    Kelli

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  • JenC
    JenC Member Posts: 382
    edited June 2010

    Kelli- I am a tripple negative to and will be having the 4 dd Taxol and I live on the East coast so who knows. This whole thing is so hard to understand at times.



    Hope you all feel well this week. We are all strong woman and will get through this with the help of one another...



    Jen

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  • Julia123
    Julia123 Member Posts: 21
    edited June 2010

    Very interesting Kad22...I am on Long Island, in NY (east coast), and am doing the 4X DD Taxol, so that might make sense. I do have a friend who is on the coast in FL who is doing the 12X weekly though.

    When I originally went for a second opinion to the famous Sloane Kettering cancer center here, the doctor there prescribed exactly the same regimen for me that I am on though, and you would think they would be state of the art! I am also triple negative though, so that other part about building back up is worrisome! I am definitely going to write this question down and ask my onc next time!

    I don't get the Neulasta shot anymore either though. There seemed to be a bit of confusion as to whether I should - the first time the head partner (not my usual onc) said it wasn't necessary with Taxol, this last time the nurse practitioner I saw felt I might should still get them. But, my blood counts had come back up fine from the first time, so we went without it.

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  • susiesue
    susiesue Member Posts: 68
    edited June 2010

    okay, just to add to the confusion.....I am in New Jersey and getting the 12 weekly Taxol, also triple negative.....

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  • Emme
    Emme Member Posts: 205
    edited June 2010

    Hi Ladies~ Happy Summer to all!

    I had a rough day.  This morning I went in for fluids which usually peps me up.  I was so exhausted I came home and slept for another 4 hours.  I think perhaps it's just the AC.  I am hoping tomorrow I am feeling a bit more energetic.  My Onc. seems to think I will feel more normal after 3 or 4 weeks...what EXACTLY is normal now? :)

    I haven't had my period in two months since i started the AC.  It had stopped when I previously had the Taxol, but it came back.  I told my Onc. I deserved a rebate or a coupon because I had my period return...to that he said he would give me a coupon for 4 more chemo tx...the AC...hey gotta get your humor where you can...he made me laugh...but the periods are gone for now.  The hotflashes are annoying....do any of you actually break out in sweats?  Some days it is horrible how many flashes I endure.  All night it's covers On and covers Off....

    I am headed to bed...wishing all of you a good night.

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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited June 2010

    Talk about hot flashes.  I am constantly asking my family "is it hot in here" when it is just me.  We are enduring the battle of the open patio door these days.  I want it open for the breeze, and my DD complains that it is too cold and windy.  I wake up at night and I feel sweaty, like you Emme, it's covers On and covers Off.  I haven't worn my sleep cap because I look forward to feeling coolness on my head.  My periods are gone, hopefully for good, although I did have some light spotting a couple of weeks ago.  I am 51, and I was soooo ready for that nonsense to stop!  I was still firmly pre-menopausal and this is the one positive outcome to having chemo.

    Like some of you, I am also fed up with this whole process.  I have three treatments left, with Docetaxel.  I think that I have hit a bit of a wall, I want it to be over.  On the one hand, I am halfway done, one the other hand, I'm only halfway done!  I'm tired of having the PICC line in my arm, I just want to have a shower without having to cover the darn thing up.  I am tired of having to grab something to cover my bald head before I head out the door, because I don't want to be topless in public.  This cancer thing has been going on for more than six months, and I want it to end, so I can go back to being normal again.  Whatever that might be. 

    Well, that feels better, thanks for letting me blow off some steam.  Good night all.

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  • susiesue
    susiesue Member Posts: 68
    edited June 2010

    anyone having nose problems?  I woke up Sunday, looked in the mirror and saw my nose bleeding.  Then last night it bled again, this is no fun.  I also had lots of body aches last night.

    are we having fun yet?, good luck to all

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited June 2010

    dutchgirl6: You mention letting off steam. How appropriate for those of us with hot flashes! That's what I feel like I'm doing, literally Wink

    susiesue: I have occasionally had mild nose bloodiness when I blow my nose, but not actual dripping. What a great extra gift, huh.

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  • shygal
    shygal Member Posts: 89
    edited June 2010

    Hot flashes galore over here too.  They are driving me insane, especially at night.  I'd say that I always have a really big one at 4am which wakes me up for a few hours.  The Onc said that they should dissipate with radiation (a bit) but I expect them back with Tamoxifen.....oh Joy!

    I looked into taking Effexor to control them but the Onc told me it's an anti-psychotic drug that just has the additional benefit of controlling hot flashes.  The withdrawal symptoms, apparently, are brutal.  I won't be taking it but I do hope to take Black Cohosh once the chemo/radiation is completely done with the Onc's approval.....let's hope it works.

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  • LauraM
    LauraM Member Posts: 251
    edited June 2010

    Well had my last AC on Thursday and this treatment really socked it to me.  I felt pretty much like I did with my 1st tx.   My stomach has been a mess and so has my throat.  I can't get the yucky taste out of my mouth today either...ugh!  I didn't sleep much last night because my stomach was so bloated and gassy.  My poor dh, I am sure my up and down every hour didn't help him either, but he is a trooper and didn't complain at all.   My stomach has been feeling a little better this morning so at least I know I am on the mend.  I just called my onc about my sore throat and just my luck they are not in the office today and told me to go to my  primary care Dr. Called them and hoped that they would just call me in an antibiotic so that I didn't have to go there with the chance of catching anything else but of course they want to see me.   I am pretty fed up with all this crap!   I really just want to feel better again... tired of being tired and yucky today.   Sorry for all the complaining but really having a rough feeling sorry for myself morning!  Thanks for listening.

    I hope everyone out there with hot flashes is having a cool  day! 

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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited June 2010

    ((((EVERYONE))))

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  • marcy4
    marcy4 Member Posts: 162
    edited June 2010

    On the bright side. I had my second weekly Taxol this morning and it was uneventful.  I am counting down with only 7 more to go.  I go next week and then get a week off which I am looking forward to.  It is great to go get a treatment and know that the end is one step closer......

    Hope everyone has a great week and the courage to keeping fighting regardless of how yucky we all may feel at times and the little or big surprises that occur along the way.

    I have an interesting rash on my arm. 2 lovely spots that seem to have no reason to be there. I have to keep on eye and them and return if they change in any way.  I put some cream on them last night and they both dramicatically have reduced in size. The orgin, what they are....no one seems to know.

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  • saralmom
    saralmom Member Posts: 329
    edited June 2010

    My third weekly Taxol was yesterday - went fine.  No vomit - I love how now I judge things by whether or not they make me vomit.  I guess this is what everyone refers to as the new normal.  I'm really glad to be 1/4 of the way through Taxol, and almost 1/2 way to being done with chemo altogether.  Next week is a Herceptin + Taxol week, so that will suck - such a long time to be in that stupid chair.  

    I am having some slight hot flashes lately - and my period did stop this month.  I actually was glad about that b/c my brother in law who is a physician sent me an article from the NE Journal of Med and it said that amenhorrea (sp?) was an indicator for increased treatment success.  Mixed blessings I guess.

    Hope everyone is feeling well today.

     Sara 

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  • Emme
    Emme Member Posts: 205
    edited June 2010

    Hugs to everyone!  We could start a 4 am Hottie club...sounds better than hot flash club :)  That is when mine are bad too!  It seems I'm up for a few hours at that time...

    Laura- I am having AC and a SE is a sore throat...I have been getting one for the last two treatments, maybe the last three...my mind is sooo goofed up at this point.

    I was fit today for a compression garment for the lymphodema in my arm.  Did I mention today that cancer sucks?

    OMG I forgot to put on a scarf or hat when I ran out of the house to pick up my son at the shop.  the shop is just a mile down the road from my home.  I pull up infront of the shop and realize I am bald!  I was laughing, my dad and my nephew were just smiling at me...I must have looked a sight. 

    This last AC has knocked the #$%^ outta me!  I am so tired.  My stomach is funky, and the sore throat bites.  All these things mean the chemo is working, right? I am trying hard to keep the faith. I am looking forward to the coming weeks when my body gets stronger, recovering from all of this.  Then I have the herceptin to look forward to.  I am so thankful I dont have to have more taxol. 

    Ladies, Thank you so much for always lending an ear and offering encouraging words.  You all have made a big difference in my life!  OXOXOX

    Emme

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited June 2010

    Thank you all for your help. Its just encouraging to remember that no matter how bad this gets, you have been through it too. 

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  • toughmom38
    toughmom38 Member Posts: 79
    edited June 2010

    This is really strange because I wake up at 4:00 am EVERY morning with a hot flash! I had a period after my first and second treatments but have not had one since 5/9.  I hope your article is right Saralmom, and it means better treatment success. 

    I'm with you, Dutchgirl, I'm over the whole thing.  I have 2 of 6 total TCH treatments left but I've heard of some people only having four, so I feel like telling my oncologist I'm done.  (But I know I won't, I have to see it through to the end.)  If I stop now and it comes back I'll always wonder if it's because I didn't have my last two treatments.  July 1 and July 22 then I'll be done (hey, that's one month from today!), except for the 11 Herceptin treatments after that and the tissue expander exchange surgery and the scans and MUGAs, and oh, no this will never end will it?

    ((((HUGS)))) to everyone and thank you all for your support and stories that remind me that I am not the only one going through all of this...

    Jennifer

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  • peacelovedogs
    peacelovedogs Member Posts: 57
    edited June 2010

    So I think I am still weak from AC.  I know my hemo was really low (8.2) and if it is low tomorrow I have to have a blood transfusion.  I am guessing that is why I am still feeling crummy on Taxol and Herceptin?

    I go for round 2 of 12 tomorrow.  I hope I get the transfusion - I hear you feel so much better.  I'm at the point that I just want energy.  Thankfully I am not working because there is NO way!!  I am trying not to get down because I KNOW the AC kicked butt (Dr could not locate my tumor last week!!!) and this will increase the chances of my survival but somedays are harder than others to stay positive.

    Thankfully you ladies understand!!!

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