Any dose-dense grads?

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Member_of_the_Club
Member_of_the_Club Member Posts: 3,646

I guess I'm inspired by the TAC thread.  Just wondering how those who had dose-dense are faring.  I get the sense that it is already on the way out, so I think those of us who went through chemo 2004 to 2005 were the peak of it.  Anyway, since it was a new protocol, I wonder if any unusual side effects have turned up over time.  I had what my docs believe was a delayed side effect of a stomach disorder called gastroparesis but its been gone for a few years now and I feel great.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited January 2009

    Hey MOTC,

    I had dose-dense tx in 05. I had herceptin thrown into the mix the last three taxol txs. I get achey every so often, but don't know if that is from the chemo or herceptin. Could be cause I am 40 now! I do worry about heart damage from the a/c herceptin combo. I get a little out of breath now and then, but overall feel okay.  I am happy to read that your stomach issues have gotten better and you continue to do well. Good news!!

    Lexi

  • smithlme
    smithlme Member Posts: 1,322
    edited January 2009

    I had DD AC followed by DD Taxol in 2007. My knees and hips ache at times and I still have slight neuropathy in my left foot. Can I blame the weight gain and my lack of motivation to lose it on chemo??? I did join my local gym today and I've signed up to walk in the Komen 3 Day in October in San Francisco. I'm feeling pretty good most of the time, but my chemo-brain concerns me...

    Linda

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I also had DD AC followed by DD Taxol from October of 2005 through February of 2006. I'm feeling great. No s/e's - other than chemo brain...my memory is horrible. My life is one big post it note!

    I didn't know they're not doing this anymore, why aren't they? What are they doing instead?

  • LizM
    LizM Member Posts: 963
    edited January 2009

    Another dose dense grad here.  Had 4 DD AC followed by 4 DD Taxol from Nov 05 to Mar 06.  Not really any side effects that I know of for sure.  It is hard to tell since I also had an ooph and am on Femara.  I wanted to tell all of you that I read an article on results of studies presented at this years San Antonio Breast Cancer symposium comparing some of the chemo treatments.  I had always thought that TAC might turn out to be better than DD AC followed by Taxol but that is not the case.  The results showed that sequential DD AC and Taxol had less recurrence than TAC X 4 and was equal in effacy to TAC X 6.  I will try to find the results and post the link.  I think that some of the changes recently might be to not include adriamycen (the red devil)  due to unnecessary toxicity but I think we should all feel pretty confortable with having dd AC followed by Taxol.

  • Alicia70598
    Alicia70598 Member Posts: 191
    edited January 2009

    I just finished dose-dense ACT plus Avastin in December. No major side effects during or since. I thought dose-dense was now standard of care, proven to be more effective. Am I missing something?

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited January 2009

    Oh, my apologies.  I know a woman who was advised to have TAC (she was stage IIIc and has, sadly, since progressed to mets) just last year because she was told it was more effective than DD.  I'm thrilled to read that it is still considered as effective or even more so than TAC.  I was happy to be finished quickly but I always had this nagging sense that it might have been more aggressive to do TAC.  Now I won't have that anymore.

    I have also wondered if the increased density plus the neulasta would create late side effects, but apparently not.  Woo-hoo dose dense sisters! 

  • cmb35
    cmb35 Member Posts: 1,106
    edited January 2009

    MOTC

    Interesting thread, I'm also a '05 DD AC/Taxol grad. I do have some lingering neuropathy, and apparently a heart murmur now (but the no problem kind of heart murmur, don't even need to take antibiotics for the dentist), but besides the occ aches in my shins, I'm pretty darn good to go.

    My onc told me that they THOUGHT DD was more effective, so switched to that as their standard of care, but later found that it wasn't any more or less effective than standard TAC - basically a wash. That conversation was at least a year ago though...

    And yes, a big woo hoo to all!

    Edited to add DD AC/T was (and I believe still is) the standard of care at Dana Farber in Boston.

  • LizM
    LizM Member Posts: 963
    edited January 2009

    http://www.medpagetoday.com/MeetingCoverage/SABCS/

    Article is titled

    Mixed results for Sequential versus Concurrent in Breast Cancer Therapy.

  • LizM
    LizM Member Posts: 963
    edited January 2009

    Actually when I read a similar article on the same study it indicated the AC/T was every 3 weeks not dose dense and it still was as effective as TAC so I am thinking that dose dense might end up with even better results.  I know they prefer dose dense at Johns Hopkins and Sloan Memorial and Kettering.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Very interesting. I appreciate all the posts pertaining to this. It just so happens that tomorrow is my "every 4 month" Onc appt. I will definately ask him about this and will post his thoughts. I think the world of him...my cousin is an Onc... and she had lots of good things to say about him. I'll let you know. Be well.

  • Bugs
    Bugs Member Posts: 1,719
    edited January 2009

    I had DD in '06.  Was told it was the standard of care.  I have no lasting side effects that I can blame on DD.  I mean...Tamoxifan, no estrogen, DD chemo...I have alot I can blame for any ache and pain. :)

    Bugs

  • paige-allyson
    paige-allyson Member Posts: 781
    edited January 2009

    I had dose dense AC/T from the last week of June 2007 to October 6, 2007  at Dana Farber in Boston. I'll have to look up gastroparesis- don't know what it is.

    I seem to be well so far- no major memory problems, no weight gain. I had minimal SE with treatment. I had problems with fatigue during treatment and perhaps still some lingering fatigue. It's hard to judge.

  • Raye99
    Raye99 Member Posts: 1,350
    edited January 2009

    I also had DD A/C and Taxol in 2006. No physical side effects (knock on wood), but like Laura, I do have some memory problems.

  • BethNY
    BethNY Member Posts: 2,710
    edited January 2009

    I did DD AC and DD Taxol and then Herceptin. This was when the FDA had just approved Herceptin, and it was before the standard protcol was for Herceptin to be given with 12 weekly Taxol.

    I know that dose dense is still the standard protocol for most young women with BC. On the flip side I have a young friend with stage 3, that did ACT every 3 weeks for 6 tx's, and her onc felt that was comprable to 8 DD tx's of AC then T.

    While I have no lingering side effects, I do suffer memory issues like many of you, but I absolutely think it is related to estrogen, testosterone, and progesterone levels being completely out of whack in my body.

    The unfortunate thing, is that there is nothing I can do about it, since my cancer was weakly ER positive. I would say above all, the memory and cognitive issues are the most bothersome.

  • gsg
    gsg Member Posts: 3,386
    edited January 2009

    In 2006 I had 4 DD A/C followed by 4 DD Taxol.  Memory loss is my biggest complaint as a direct result of the chemo.  The neuropathy in my toes from the Taxol is a lot better, but I still cannot wear socks.  Had an appointment with my onc on Monday and my blood pressure is way too high.  He and I are both guessing that is from the extra weight I'm still carrying since chemo.  Arimidex has made losing it very difficult.  But still dancing with NED, and hopefully the dance will continue.

  • abbadoodles
    abbadoodles Member Posts: 2,618
    edited February 2009

    A year and a half after finishing 4 DD A/C, I still have issues with nose and eyes that run at the slightest provocation.  This is, I am told, a side effect of Cytoxan.  Of course, my onc said "NO WAY am I still having trouble from that being so long ago.  It must be allergies."

    As I never had allergies, and since I don't have trouble with runnies except upon exertion (walking, running, etc.) I think she is full of s--t.  She also told me a couple of other strange se's were not from the chemo.  Needless to say, I no longer see her.

    On the bright side, I've never suffered any chemo brain issues, maybe because I was already over the hill.  Tongue out

  • GramE
    GramE Member Posts: 5,056
    edited February 2009

    I had 4 DD A/C times 4, every 2 weeks.  Then 2 weeks off and 12 Taxol and Herceptin, every week.  June thru Oct 2008.   The tumor kept shrinking until it could no longer be felt before I finished the T & H.   Mri, CT, mammo, and ultrasound pre surgery (abt 3 weeks after chemo was done) showed NOTHING.   Surgery in Dec 2008 was a lump, with clear margins and NO evidence of carcinoma.  Also, NO lymph involvement.   

    My onco calls me her star patient with the best results of any of her patients.  I just turned 63, so was 62 at the time of chemo tx.    SE:  some stomach upset - controlled with neulasta and OTC meds, no taste, hair fell out, tired, fatigued, achy bones, toe nails lifted and starting to grow back more normal now.  Finger nails were half dead, sensitive to the touch, but also growing more normal now.  Since beginning Herceptin only, the nose runs like a faucet sometimes.

    The worst is neuropathy in my left (dominant) ring and little fingers.  But I have had extensive reconstructive surgeries on this wrist/hand going back almost 30 years to the point I have 30% of normal useage of this hand and very poor fine motor control.  

    To summarize,  DD worked for me.  Zapped my tumor and I had clear margins and NEC.  I am HER2+++, and way past menopause, which could skew the results somewhat.    

  • GramE
    GramE Member Posts: 5,056
    edited February 2009

    P.S.  Muga before any chemo, during, and after showed no change in heart function.   I need to schedule another one in 3 months, since I am on Herceptin every 3 weeks thru October 2009.

  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited February 2009

    I had DD AC, then DD Taxol, four rounds each.  I dont seem to have any side effects left.  I do have some stiffness, but I had that before chemo, from lupus and firbromyalgia, so I never know if it's from the chemo, or not.  Mine ran from June 2007 to September 2007, and I'll be two years with NED as of April.

  • gracejon
    gracejon Member Posts: 972
    edited February 2009

    I did dose dense and think I am faring well.  I can't say that anything I am experiencing currently is related to that chemo.  I've got some aches etc but also have rheumatoid arthritis and had it prior to chemo.  I will not regret what I chose to do and gave my best decision at the time.  Not looking back and no regrets!

  • Jorf
    Jorf Member Posts: 498
    edited February 2009

    March through June 2006. Chemo brain, chemo brain, chemo brain. I don't know, I just say, "4 head injuries, chemo and menopause. You expect me to remember anything????" Although I did start and stop a PhD program, in part because I just don't think or organize in the way I used to. Lots of other reasons so it's not really so bad.

    My worst is that I gained back the weight I lost during chemo and it's much fattier than it used to be. I work out 4-6 days a week but this menopause version of weight just isn't the same. It's hard, I got used to being really thin (I actually shouldn't complain because I'm really of good weight) even tho I know it was because I was so sick....

    I didn't experience any of the big Taxol side effects like bone pain or neuropathy so that's not something I'm recovering from.

    Anything else I blame on tamoxifen - joint pain, constipation. I'll be switching to an AI if my onc ever gets it together (I better send her another letter). That'll be interesting.

    The emotional? That's still working it's way out as life goes on. 

    DD was standard of care when I was treated. Anything newer/better wasn't there at the time and I'm fine about that. I figure we got to reap the rewards that occurred in the 3 years after the 2003 people and it'll always get better. Thank the goddess. I just met a researcher in the turning on and off of genes for BC last night. It's all changing....

  • caaclark
    caaclark Member Posts: 936
    edited February 2009

    I had dose dense A/C followed by DD taxol.  No lingering side effects to speak of. 

    I am currently on Femara and have some minor joint pain but I think that's what happens when you depleat your body of estrogen at age 42.  I can still run several times a week and really have no physical limitations so I consider myself lucky.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Asked my Onc...he is not totally convinced about TAC... feels the research isn't comprehensive enough...yet...so, he lets the patient choose. He said only one girl (there was a total of 18) in the last year went with TAC (as opposed to DD).

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited February 2009

    I am a DD AC/T.  with Herceptin afterwards. I loved getting through it fast. Obviously, I progressed, so I am not sure it made a difference.  I didn't feel I had side effects. Most of what I had was from going into menapause early.

  • Texgirl
    Texgirl Member Posts: 211
    edited February 2009

    I,too, had D.D. A/C+ T in Early '05...I will be 4 yrs out on Sunday..and still NED. I tolerated it well and I was 55 at dx...I was in the clinical trial. Had rads. Currently on Aromasin w/o problems ...prior meds Tamoxifen and Arimidex.

  • MargaretB
    MargaretB Member Posts: 1,305
    edited February 2009

    I had 4 tx DD AC and opted not to do T since it only provided me with a 1% decrease in the risk of recurrence.  I have had no side effects that can be directly attributed to DD with the exception of maybe chemobrain, course part of that could be age too.

    Glad to hear we are doing well.

    Margaret  

  • mke
    mke Member Posts: 584
    edited February 2009

    I did DD AC and taxol in 2006.  I do have neuropathy from the taxol in both my hands and feet.  It doesn't make a big difference to my life, but like gsg I have trouble with socks.  The snow is a foot deep around here so I have to wear them, but I'm constantly searching for ones that are thin, warm and seamless.  I now have a sock fetish.

  • Poppy
    Poppy Member Posts: 405
    edited February 2009

    I had DD A/C-T in 2005 and I have zero short term memory... In one ear and out the other. Drives my husband nuts since usually it's a work related issue I forget to do. I have always been like this but I know it's much worse now than before chemo. Teeny bit of neuropathy in my feet once in awhile but it's hardly worth mentioning. About 10-15 lbs weight gain that I cannot lose, but that's probably due to tamox, not chemo. One side effect I DO know I have is that I'm still alive! So hooray for chemo! I think... :D

    Erica

  • GramE
    GramE Member Posts: 5,056
    edited February 2009

    mke, I think Walmart has socks for diabetics, less elastic and non binding.  not very pretty, but very comfy.   Most other socks have lumpy toes and seams, which bother me.  P.S. I am NOT diabetic... 

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