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Weekly Taxol group

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Comments

  • ridergirl
    ridergirl Member Posts: 94
    edited March 2013

    My understanding is that the benefit of oophorectomy is related to whether or not the breast cancer is ER+, since the ovaries produce estrogen which can feed an ER+ cancer.

  • ywheels22
    ywheels22 Member Posts: 74
    edited March 2013

    What is an oopherectomy? I certainly think environment plays a roll to some extent though genetics does too. I am BRCA 1 and 2 negative, +,+,- with no other reason to have BC but here it is. I think it was birth control as well, though my MO says there is no scientific evidence to support that theory, as of yet.

    Nicole: how are your Taxol SE's. ON Day 3 of AC#4. Feeling pretty tired and achey but otherwise okay. Just sleepng alot! You are almost done!!!! Yeah!

  • ridergirl
    ridergirl Member Posts: 94
    edited March 2013

    ywheels an oophorectomy is removal of the ovaries

  • ywheels22
    ywheels22 Member Posts: 74
    edited March 2013

    Ridergirl: thanks. Did not know that. What would make one decide to do that? Is it based on a number of factors?

  • ridergirl
    ridergirl Member Posts: 94
    edited March 2013

    For me it was recommended because my cancer is ER+, and the ovaries are a source of estrogen in our bodies.  However they aren't the only source and I opted not to have the surgery, am currently in 'chemopause' so for now that helps. Also there is the option of Lupron shots, which stop the ovaries producing estrogen, or at least reduce it, but the shots are not 100% effective according to my MO. Still think I will choose that as opposed to a surgery.

  • Cindi74
    Cindi74 Member Posts: 69
    edited March 2013

    Wow, 4 weeks and three days after last of 12 Taxol and I feel almost myself.  Energy coming back, and brain working better.  Had third of 33 rads this morning.  In at 11 for apt., and out at 11:11.  They have you give your name at the desk and go immediately to the dressing room to put on gown.  Was called immediately,  about 3 minutes for placement, and then I put bra and shirt on in machine room and was out the door.  So much better than waiting 45 min to be called for Taxol, and then in the chair three and a half to five and a half hours.  I feel like I'm beginning to get my life back.

    I do gel nails at home from Walmart.  Give myself manicures like the shop, butl it doesn't cost 36$ including tips.  My nails, which used to crack and break before gel, get long and look good.  The gel stuff with light last almost three weeks before chipping.  Then I just scrape the stuff off with a thumb nail.  My thumb nails have verticle ridges, and one is dark gray and the other is almost light black like I hit it with a hammer.  I don't remember hurting it, so I'm blaming it on the Taxol.  Actually Taxol is my excuse for not doing anything.

    Mowed two pastures this afternoon,and picked up some limbs and old palm sections to reposition to the burn pile.  Someone dumped them around the edges so weeds can grow up through them.  It was a mess.  But I did some work, got some exercise and felt good about it.

    Taxol is nasty stuff which tires you out and causes aches, but hopefully it kills those cancer cells.  I'm glad it's over. 

  • debbiej
    debbiej Member Posts: 24
    edited March 2013

    Hey all,

    what dose of B6/12 and glutamine do you take.  I think I read you are suppose to take the powder form of glutamine but I forgot how much and the dosage. 

    Also I got my MRI brain scan back clean so that means the headaches are due to the Taxol.  I got a Bladder Infection this week so I got a week off.  It has been a god sent!!!  Even the chemo brain has been allot better.  I feel human.  I have 4 weeks of Taxol left then I start the ACF for three more months, not looking forward to that, it really scares me!!

    Big ole hugs to you all,  Debbiej

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited March 2013

    Debbie~~L-Glutamine should be powder. You'd have to take the pills 14 at a time 3 X daily. My oncologist said to take 10 gms ( 2 heaping teaspoons full) in juice 3 times daily. I mix it in a tiny glass not much larger than a shot glass. I mix it with grape juice and drink it straight down. It's not bad. I do it the day of chemo and 2 days after.



    The Vitamin B6 is 100 mg. twice daily. When I bought mine they only had the 200 mg, but my onc said that's ok.



    Blessings

    Paula

  • politicomama
    politicomama Member Posts: 52
    edited March 2013

    Paula how were your counts today?  Did everything go good?  Cookies from the little food place are good just for future reference :)

    On all of the stuff they send to my family doc it says that my cancer was pregnancy induced.  My mom's cancer they feel was directly related to hormone replacement therapy.  

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited March 2013

    Politicomama~~Wow! I've never heard of that! Pregnancy induced? Because of the extra hormones going on?



    My neutrophils were up from 1.1 last week to 1.7 today. I've never been in the little cafe, but my sister went down a couple times to get us lunch. I like their BLT. I'll have to try their cookies. I'm a real Cookie Monster!



    You don't get pre-meds now, do you? I don't, since the 2nd Taxol. I read that some ladies get them the whole time. I'm so glad to be done with steroids.



    Blessings

    Paula

  • politicomama
    politicomama Member Posts: 52
    edited March 2013

    Pregnancy induced because of all the extra hormones, exactly.  Wouldn't change my decision to have him for the world though.  I have another friend who is a little over a year out who was the same thing, also treated at OSU, and other girl I know who was treated while pregnant for her first, and had stage IV recurrence after her second.  She is still kicking strong though! 

    No premeds for me since number 2.  I'm thankful! I still have SE, but the worst of it is fatigue.  I wrote in my blog the other night that working full time, parenting full time, and being a cancer patient full time has about done me in.  I'm enjoying the peace and quiet of nap time now.

    I'm am trying to figure out something special for our daughter who just turned ten as she has been such a huge help with her brother keeping him entertained on the days I don't feel so hot.  

    Cindi, I am glad to read that you are starting to feel like  yourself!  Gives me hope!

  • colt45
    colt45 Member Posts: 383
    edited March 2013

    Wife did Taxol #7 Thursday. Her back is sore. Is this a normal sounding SE? She did DD A/C before that. Are aches like a sore back a reasonable cumulative effect SE?



    Thanks. Bless you all.

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited March 2013

    Colt45~~Yes, bone or joint pain is a normal SE. For me, it comes & goes for a couple days. I'm getting #5 on Friday. I was absent mindedly shaking my ankle the other night while kicked back in my recliner. I didn't realize I was doing it until my husband asked if I had to pee. I told him, " no, my ankle hurts." Sometimes it's my back. Other times its my knees, ankles, or shoulders. Sometimes it only lasts 30 minutes.



    Blessings

    Paula

  • colt45
    colt45 Member Posts: 383
    edited March 2013

    Thanks, Paula.

  • Georgetta
    Georgetta Member Posts: 25
    edited March 2013

    I'm feeling a little down in the dumps this morning. Don't know why and hate to admit it.  Seems like people expect me to always be happy and perky.  It's hard to always be that way.

    After tomorrow, I have only one Taxol round left.  Then comes lumpectomy and radiation.  I started Neurontin yesterday to deal with the neuropathy in my hands and feet.  I hope it works. 

    Enough griping from me.  Hope everyone has an easy SE week. 

    Georgetta

  • martha323
    martha323 Member Posts: 17
    edited March 2013

    Greetings! I'm new to this group - I start the first of 12 Taxol tomorrow along with Herceptin. I'm in a clinical trial (B-47), thus the Herceptin for 12 weeks and then every 3 weeks - one year total. I'm encouraged to hear that the SEs of Taxol still leave you feeling better than AC.

    A couple of questions: Is anyone else also receiving Herceptin with Taxol? I read that the doasage for B6 is 100mg 2x a day. What about B12?

    Georgetta, Hope your spirits lift today - this is the best place to vent - and congratulations on your last Taxol!

    Best wishes and prayers to all - Martha

  • nicole503
    nicole503 Member Posts: 99
    edited March 2013

    Hey Martha~

    Welcome to the Taxol club! I started with 100 mg B6 & 1000 mcg B12+ 10 mg l-glutamine twice per day + 250 mg magnesium in the evening.  Unfortunately my liver didn't like the taxol/l-glutamine cocktail so I have dropped the l-glutamine and raised my B6 to 200 mg twice a day.

    I had slight neuropathy (just a real tenderness of the fingertips) off and on after Taxol #1 & 2.  I have it again now (Taxol 3) and it's been holding pretty steady for the last day.  I'm afraid that it may not go away without the glutamine support but I had to get my liver enzyme levels back down in order to get the final full dose of taxol.

    I hope your first Taxol/Herceptin treatment is easy and the SE's are a pleasant surprise after AC!

  • nicole503
    nicole503 Member Posts: 99
    edited March 2013

    Georgetta ~ I was feeling exactly like you do on Monday.  It was a hard day.  <<Seems like people expect me to always be happy and perky. >>  I find that not only is this true, it is also true that I put a fair amount of pressure on myself to be happy and constantly finding the silver lining.   It's a nice feeling when people admire you for "your great attitude about your cancer" but it's a little addictive and can squeeze out the room we need for grief and depression and the like. I like to think of the experience of having breast cancer like a many colored quilt.  There are surely some silver and sunny yellow and PINK threads, but it is also woven of grey and black and muddy browns. The most beautiful quilts manage to weave together all these colors.

    Like you, I only have one round of Taxol left and it's tempting to lean forward into being "almost done".  But the reality is that each infusion has it's own side effects and the side effects are cumulative and hard.  We can try to put a silver lining on it all we want, but the truth of cumulative toxicity is the truth of our existence.

    I am worrying about neuropathy now.  Can you tell me what yours is like and at what point your doc offered you neurontin??

    Wishing you well in the relative calm space before your last Taxol. I hope for you the possibility of some recharging of spirit and body as you get ready to transition into your next treatment chapter.

    Be well.

  • Georgetta
    Georgetta Member Posts: 25
    edited March 2013

    Nicole - how beautifully written.  Your quilt analogy is an apt one.  Thank you.  I feel better right now.  Every now and then I seem to have a moment of being sad - maybe it's grief.  Cancer does stink.

    I see you've had some massive surgery.  I hope you're doing well.  I thought I would be in your surgery position but my chemo worked enough and shrunk the tumor.  I'll be having a lumpectomy on April 22.  Then I start radiation. 

    The neuropathy started after a couple of the taxol treatments.  It started in my hands but it's now in my feet and hurting.  I'm an athlete and not being able to walk/run is a bummer.  I tried some supplements that didn't work.  Last week the Dr asked how it was doing and I told him ok.  After a 2 mile walk on Saturday my feet have been hurting alot.  I called yesterday and said "Uncle".  He prescribed the Neurontin.  I'm hoping it works. I'm taking 300 mg 3 times a day.

    Your message helped alot. Often, only someone that has walked the same path can understand. Thank you.

    Georgetta

  • mareluna
    mareluna Member Posts: 275
    edited March 2013

    Good luck with the neurontin. It made me grumpy and miserable. I refused to take it.  Hope you all are getting through the taxols well.

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 188
    edited March 2013

    Wishing everyone well on your 12 weeks of Taxol. I did this routine in 2012 and fared very well overall - except for neuropathy for the last 6 treatments. My neuropathy COMPLETELY went away within 2 months after Taxol was finished. My biggest issue was since I needed to work (I was doing about 30 hours a week), I couldn't really fit in ANYTHING other than work and medical appointments and basic self care. I'm blessed to have not had any major obligations. Sadly, my father passed away during my treatment and I was able to get home to see him before he passed and attend his services. Hard times. Other than that, it was the routine, and I was tired. At this point, I am only on Herceptin and my chemo/radiation fatigue has mostly cleared up. I'm at 80% normal energy level for me. My doctors tell me it will keep improving. Hang in there everybody!! The sun will come out.Cool

  • ywheels22
    ywheels22 Member Posts: 74
    edited March 2013

    Nicole: you express all of this so well. I love what you write.

    Mariasnow: Awesome you are so far done!!! I only have 4 taxol, double dose dense. I wonder how long after my last tx I will feel 100%? I am done with AC, which was not easy and all say Tasxol is much easier on the body, mind and soul. Here is hoping. I cannot wait for my sun to come out! Thank you for your encouraging words and checking back in with those of us still fighting on.

  • Speedy4
    Speedy4 Member Posts: 44
    edited March 2013

    I was wondering how many are doing just weekly Taxol x 12 with Herceptin without doing Adriamycin & Cytoxan? I'm trying to decide on chemo and the MO I saw today at MSKCC recommends doing just Taxol x 12 + Herceptin. She is the second MO to suggest this. The other regimen I'm deciding about is TCH. I'm wondering about the pros and cons of each in regards to SEs (long term & short term) w both.

  • jayjayc
    jayjayc Member Posts: 31
    edited March 2013

    hi speedy4,



    I just did the 12 weekly taxol and herciptin.... based on the size of my tumor (9mm) I was told chemo was not "required" but my MO was worried because of how close it was to being 1cm, and my age (48), and being her+....... she felt my recurrance was mid-20 percent.....



    She started talking about doing the full set of chemo (starting with three full blown chemos) and then the 12 weeks and I said no way..... I was TERRIFIED of chemo... then she offered to have me skip the first part and just do the 12 week combo.... she felt that I needed some bad chemo to kick start the herceptin.... but was really pushing for the herciptin.



    I just had number 11 yesterday so only one more to go..... YIPPEEEE



    In terms of SE's the main ones have been fatigue and neuropathy..... and both have gotten worse with each treatment..... but they are manageable....

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2013

    Speedy, I think I responded to you over on the triple positive thread, but I had just 12 weekly taxol and Herceptin. I was able to work throughout treatment, except on treatment days. Taxol tends to cause low hemoglobin/red blood cells so I became a bit anemic but never got to the point where I needed a transfusion. My white blood cells remained normal throughout. I think with TCH you're pretty much guaranteed to need neulasta or neupogen after each trreatment to boost your white blood cells. I went to the gym and walked on the treadmill 3 or 4 times a week, which I think helped with my energy level. I had a little neuropathy, controlled by taking glutamine and vitamin B6. I had a pretty constant battle with constipation (interspersed with a little diarrhea...) so I tried various things and ended up taking Sennokot pills most days. I used cold caps to keep my hair. Altogether it was a surprisingly easy 12 weeks for me. I think those who have AC first have much worse side effects during taxol. I hope that the taxol plus Herceptin did the trick for me, and it's reassuring to see more recommendations for that regime. Good luck in making your decision!

  • Speedy4
    Speedy4 Member Posts: 44
    edited March 2013

    Thank you jayjayc and PatinMN! This is the hardest decision I've ever had to make and it is so helpful to have the input of people who are going or who have gone through this treatment. Of course there is no crystal ball or guarantees with any treatment, but gathering tons of information is the way I can feel comfortable that I made the right decision for me. Thanks again!!

  • martha323
    martha323 Member Posts: 17
    edited March 2013

    Nicole, Many thanks for the information re: the B viamins. I love your quilt analogy - you write very well.

    I appreciate everyone sharing their experiences with Taxol - very helpful. Off I go for round two in about an hour - at least it's not snowing!

    I hope that you all have a good day with more energy than expected! Hugs and prayers to all, Martha

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2013

    Speedy - a couple more things. No nausea whatsoever with taxol. I never lost taste sensation. I gained about 15 pounds - weight gain is pretty common with most chemos I think. It sure doesn't go away as easily as it comes on!



    Taxotere causes permanent hair loss in a small percentage of women - 3% to 6% is what I've heard. many have complained that the doctors don't tell you about this possibility. This risk is not true of taxol.

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2013

    Jayjayc - congrats on being almost finished! Hooray!

  • honeybair
    honeybair Member Posts: 234
    edited March 2013

    Had my first Taxol/herceptin treatment yesterday to be followed by eleven more weekly treatments.  This is after completing the hellish AC regimen.  I don't think there are any words in any  language which can describe just how miserable those two drugs can make you feel.

    I have been told to take 100mg. of B-6 three times per day to prevent neuropathy.  I already get a monthly injection of B-12 which really helps overall.  i felt so well this morning after my treamtment yesterday that I cleaned the downstairs bath and ran two loads of laundry.. a far cry from what I felt following the AC.  Most of Jan, Feb and Marchhave been spent in my recliner.  I have heard that Taxol is not as hard.  But I realize that we are all different and will react in various ways to these drugs.

    Sending hugs to all of you and wishing you well.