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Calling all TNs

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Comments

  • MicheleS
    MicheleS Member Posts: 196
    edited July 2010

    I reacted to taxol at my 2nd (of 12) treatment but never did again.  They increased my benadryl for all of the other ones.

    Hope everyone is doning well!!

    xxoo

  • Titan
    Titan Member Posts: 1,313
    edited July 2010

    Shout out to Heidi!  Where are you girl????

    Oh yeah..Taxol..all the Benadryl had me climbing the walls..I don't think I slept for 8 weeks...

  • sugar77
    sugar77 Member Posts: 1,328
    edited July 2010

    Titan - I was wondering where Heidi is myself.  Perhaps she's away for the summer or something. I hope she checks in soon.  Anybody heard from Violet lately?

  • Titan
    Titan Member Posts: 1,313
    edited July 2010

    Nope..haven't heard from Violet either..I miss them!   Hopefully they are doing fine...shout out to Violet too!!! 

    And by the way Sugar..you look awesome!  I really need to change my picture..soon..that pic is from Christmas and I have changed since then..have longer hair..a little blond in it...and 20 MORE POUNDS!   

    Ran into an aquaintance tonight...she has had some issues also..but I told her my story and she said that she remembers seeing me a couple of years ago and thinking that I just didn't look healthy...she is a nurse so she probably can like smell this stuff..anyway..she said I looked good now....so I guess being a little chubby isn't such a bad thing..I think my size 8 days are gone.

  • Summer38
    Summer38 Member Posts: 96
    edited July 2010

    Had my 1st DD Taxol treatment on Wednesday. Had a reaction (chest & back pain, couldn't breath) but they stopped it right away, gave me oxygen and more steroids and then restarted in 20 minutes and it was fine. I felt much better day 1 then I ever did after AC but starting last night I feel like I was hit by a truck! My lower back, knees & shins are throbbing as well as the inside/underside (?) of the knuckles on my right hand - weird I know....

    Has anyone else experience this? When can I expect it to stop?

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    MonikaV:  I was allergic to Taxol as well (itchy in weird places and severe bone pain even 3 wks later)  No neulasta.  I took one shot of it during A/C and decided that wasn't for me..increased my bone pain, but my WBC count was through the roof.  So, I stopped the neulasta and took my supplements.  WBC count stayed through the roof and my bones didn't ache.

     Anyway, my onc switched me to Abraxane.  It is a taxane like taxol, however, it is mixed with albium, which is part of the blood....so you don't have nearly the allergic reaction as you do with taxol.  I still itch the day after tx, but one benadryl pill stops it.  They give me zofran (low dose) and the abraxane during treatment.......no benadryl, no steroids.  I don't get sick, no bone pain, just slight fatigue.  Research shows this stuff is even better at treating bc than taxol.....but it is normally reserved for those who are more advanced staged than me, or for those of us who simply cannot tolerate taxol.

    You might ask your onc.  Hope it helps.  I went to the ER for the itching after my first taxol.  It was horrible.

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    Summer.......  I had the same thing with the taxol.

    My onc explained that I cannot tolerate what they mix the taxol with to make it absorb into my body.  He said the bone pain in moderation is normal, but I felt like my forearm, wrist and fingers were broken on the side where they gave me the IV. 

    Read above post.  Taking Clairitin helped with the bone pain some, however, it was so so bad and the fatigue was horrible, I had to take  a whole week off work and just sleep.

  • jeanl151
    jeanl151 Member Posts: 36
    edited July 2010

    summer38 -   I had my  treatments on Wednesdays(every three weeks).   I usually felt good until Friday nite, felt lousy Saturday, Sunday and Monday then seemed to be back to feeling pretty good on Tuesday..  I am a pre school teacher and would go back to work that Wednesday and work the next two weeks.

      hope you are feeling well soon....take care of yourself when you are not...a little pampering goes a long way

       Jean

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    edited July 2010

    I have just been catching up on reading the postings and just wanted to say that I have recently past five years since diagnosis with a very large triple negative breast cancer.I am now 68. I have previously posted on the forum Not a Typical Triple Negative Breast cancer.This forum does not seem to be very active at the moment. Are older women now posting in this forum?

    I have found all of your postings very interesting and would like to wish all of you the very best of luck at whatever stage of your treatment you are at.

    Is anyone taking any preventive treatment  to stop the recurrence of this kind of breast cancer?

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    I pray alot, does that count?

    ;)  Congrats on your 5 yr mark sylvia!  Hope to get there myself someday

  • jenn3
    jenn3 Member Posts: 388
    edited July 2010

    Summer - During the Taxol infusion I had terrible back pain (in the muscles), it got so bad I started taking a pain pill before the infusion.  Then I was fine, actually felt really good for the next 2 days.  By day 3 I started feeling bad, by the end of the day I really felt bad, days 4 and 5 were bad, then it started getting better.  I would get these terrible pains through my legs and back, as well as sensitivity.  I hated for anyone to touch me during that time.  I also had neuropathy issues.  I did weekly Taxol and my onc said that DD Taxol would have been much harder on me. Taxol was hard, but AC was worse for me.   If the DD is too much, maybe switch to weekly.

  • gillyone
    gillyone Member Posts: 495
    edited July 2010

    Sylvia - great news on five years. I don't know about any other TN thread. This one has not been going very long. And no I am not taking anything other than a calcium D3 supplement. I am a Brit too - from the Manchster area, now living in Idaho.

  • MBJ
    MBJ Member Posts: 3,671
    edited July 2010

    Luah:  My hair came in mostly grey and some black and so so kinky!!?? so I had my girl bleach the heck out of it.  No color, just bleach.  I have always been told I look much younger then I do and I am vain enough to not want to now look older then my age!  The hell with cancer, it's more depressing to look like an old lady when people for years have just assumed I am in my 30's.

    retrievermom:  I wish I had the kind of hair that came in a lovely shade of white and grey.  I have former blonde friends who no longer bleach their hair because the color is so lovely.  I am not one of those!  My hair is long enough to spike but it just looks and behaves like a bad perm.  I am sure when it gets longer, I could do an afro, so I will eventually add a non-chemical relaxer so I can spike it!

  • MBJ
    MBJ Member Posts: 3,671
    edited July 2010

    sylviaexmouthuk:  I have been working with an integrative dr. since May 2009 five and a half months before my diagnosis.  I thought that I was having some kine of nervous exhaustion breakdown.  Couldn't get out of bed, couldn't sleep.  All of my blood tests came back normal.  Couldn't figure out what was wrong with me.  I even had him send me for an ultrasound to see if I had thyroid issues.  The my thyroid results came back normal except for some non cancerous growths on it, I discovered my first lump on my breast.  I take tons of supplements, mostly antioxidants, but the key items I take are Wobenzyme 5 tablets 3 x a day with 1000 mg of Vit C, I do the Iodine Protocol for breastcancerchoices.org, and I take 8000 mg of vit D3 with vit K1.  Excercise and diet changes allowed me to lose 20 pounds, too.  No white foods: butter, cheese, bread with more then 5 ingredients, rice, potatoes.  Lots of vegis and fresh fish.

    Do you take anything else?

  • MBJ
    MBJ Member Posts: 3,671
    edited July 2010
    gillyone:  How do you like Idaho and how did you end up there?  My husband and I researched maybe living there awhile back but thought it might be a bit too conservative there. 
  • MonikaV
    MonikaV Member Posts: 148
    edited July 2010
      Went to my onc on Thursday and they decided to start the new Chemo next Thursday. Taxorene. Anyone had that one before? If so, how did you feel afterwards? Thanks to all of you that shared that you also encountered troble with Taxol, I was so sad thinking I was an odd ball. Have a great weekend, and if you live in Southern California like I do, drink plenty of fluids. It is HOT!Cool
  • Morgan513
    Morgan513 Member Posts: 303
    edited July 2010

    I did Taxotere and Cytoxan.  I didn't find it bad at all.  Minimal side effects. At my first infusion, I had an allergic attack (which I was told was from the preservative in the taxotere).  They stopped the infusion, let me recover and then restarted it more slowly.  I had no more problems with it.  The only thing that I had any real reaction from was the Neulasta.  It would get flu-like symptoms about 24 hours after taking it.  I never had to take anti-nausea meds.  I slept well.  I ate well.  Truly was very easy for me.

    Lorrie 

  • kad22
    kad22 Member Posts: 58
    edited July 2010

    Retrievermom - when did your hair start growing back in? How about anyone else?

    I still have 10 more Taxol treatments and wondering if anyones hair started growing in before they were finished? Or do I have just wishful thinking? I am soooo tired of being bald!

    Has anyone used Biotine for growth of hair?

    Kelli

  • sugar77
    sugar77 Member Posts: 1,328
    edited July 2010

    Kelli - you might want to try visiting the thread entitled: "Hair Hair Hair - Another question" as there is a lot of discussion on there about Biotin.  Many of us also post our hair growth photos there. 

    Sherri 

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011

    MBJ:  You gave me a big laugh re Idaho and conservatism.  Come to Utah Surprised  Idaho is a breath of fresh air.

    My hair started quicker than I expected.  Mine came in evenly; I know some folks experience patchy growth.  My last chemo was Ap 8th.  It was TC 4x (started in Feb), then 33 rads with 8 boosts.

  • Claire82
    Claire82 Member Posts: 490
    edited July 2010

    For pain during chemo I took Advil and valium just at night to sleep. It did the trick.

    My hair is almost half an inch long and my last chemo was Apr. 26th

  • jenn3
    jenn3 Member Posts: 388
    edited July 2010

    Kelli - my hair starting growing back halfway through Taxol and really started growing about 2-3 weeks after finishing Taxol.  I am now six months PFC and just got a trim to even out and thin outt the thick curls that have grown back.  It's about 3 - 4 inches long right now. 

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    I have 9 Abraxane's left, and my hair is sprouting like crazy.  :)  You won't be bald much longer dear.  I've taken Biotin since forever.  It helps with nails, skin and hair.......  my hair is (when I have it) so much softer and thicker on the biotin than without it.  Truly. 

  • Luah
    Luah Member Posts: 626
    edited July 2010
    Kelli:  Like jenn3 my hair started growing about week 6 on taxol, I had quite a lot of white fuzz before I finished.
  • Titan
    Titan Member Posts: 1,313
    edited July 2010

    My hair started coming back during taxol also..that was soo sweet to see that peach fuzz..!  I started going without a wig at home because it was summer and it just felt good to get some air on my head..Other women told me that the sun (and taking biotin) helps hair grow..just don't burn the top of your head!   I finished chemo early Aug. 09 and went topless in November 09...wore the wig for 6 months..

  • MBJ
    MBJ Member Posts: 3,671
    edited July 2010

    Sylvia: I just read thru several posts on the "not a typical tn" thread and I read a few of yours.  I am convinced that my BC was thyroid related, too.  I even had them do an ultrasound on my thyroid prior to finding my first lump.  The Iodine Protocol from the breastcancerchoices.org site addresses this this issue.  They are trying to raise money for research not for TN's but for the relationship between lack of iodine in our diets (no, we don't get enough from just table salt) and breast cancer in general.  I would love to get your opinion and input on their site.  Some of it is a bit extremist even for me (I am not banning the bra as it's not practical) but there is alot of great info on there that I think is useful.

    Hair:  I take Biotin daily and I already notice my nails are growing in faster and harder.  My hair, well, if you can call this frizzy, curly mass hair, is also growing in fast.  I had my last chemo on March 1st and the first hair that grew in was uneven so after it grew one inch, I trimmed it back down to a quarter inch and now it's growing in evenly.  My hair is growing in a quarter of an inch per week (I can tell by my roots)  and I have also noticed my hair has rapidly filled in everywhere else.  Yesterday was the first time I noticed that I had to start shaving above the knee--it has been months since I have had any hair there.

  • swiftbird
    swiftbird Member Posts: 78
    edited July 2010

    Hi ladies,

    Hair growth. Hmm. I'm all over the place.  I'm 5 weeks post chemo (taxotere/carboplatin and wonderful neulasta).  On one hand, I can see sprouts on my head but my eyelashes and eyebrows waited until LAST WEEK to climb up on their horses and head out of Dodge.  Why now? *sigh*  Having my eyelashes thru chemo made me feel some vague sense of normalcy.  I feel I should not be complaining, as I tolerated chemo pretty well and had good results, but, dayum. 

    Started taking biotin, multivitmins and generally trying to get healthy again before surgery.  Leg pain, swollen feet, nasty looking nails and hot flashes still abound, but at least I can taste food now.  Yay

  • jenn3
    jenn3 Member Posts: 388
    edited July 2010

    swiftbird - When my hair had sprouts and I looked like a chia pet, I lost my eyelashes and eyebrows.  I hated that more than the hair loss. The good news is that when the hair really started growing, the eyelashes and brows came back first and fast.  And........because my eyebrows grew in so full, so fast I've got a great looking arch now.  The eyelashes were a little different, they grew in, but grew in almost straight - weird.  Now, they're back to normal, curling upward and very full. 

    My nails also had a lot of ridges in them, both toe and finger nails.  I really was uncomfortable going in for a mani/pedi, but it really helped.  The buffed the nails and used ridge filler.  Now, my big toes are the only thing left with ridges.  I didn't used colored polish on my nails, clear only, but I do go with a bright color on my toes and it did help with the appearance.  And....made me feel less like the BC patient.

    It gets better...............

  • Jwatrlily
    Jwatrlily Member Posts: 65
    edited October 2010

    I've not had my surgery, it's scheduled for Aug. 9.  I am to let them know this week what I want as far as lumpectomy or mastectomy.  I am making myself sick trying to decide.  Can anyone shed light for me.  The nurse told me not to make the type of surgery decision based on the fact that I'm triple negative.  She said the TN part of it comes in when the Oncologist gets involved and the chemo treatment is decided.  She told me if I do lumpectomy, I will also have radiation.  They pretty much told me because of being TN, I will have to have chemo.  Does the TN status ever change after the tumor is removed and re screened?

    I have Infiltrating Moderately Differentiated Ductal Carcinoma and she said in situ also but only 1 tumor?  How does that work?  I was a TN also.  All of this was based on the sample from a biopsy.  I also had an MRI biopsy last week for 2 areas that showed up on the first breast MRI.  They were diagnosed not cancer but the intramammary node was what they called fat necrosis and the 2 small round areas were not cancer and were labeled fibrocystic changes.

    Because of those things should I be considering a mastectomy as my only option?  My surgeon who is a breast cancer surgeon, told me there was no wrong decision in this and that my outcome would be the same.  I don't question her and I trust her knowledge but I just want to do the right thing to give myself the best chance.  In my hopeful mind I think because I'm going to have to have chemo due to the TN, that by doing a lumpectomy and having to have radiation also, that I am giving myself a back up insurance plan and hitting this with every medical treatment I can.

    I want your comments and input from your experiences. I'm having a more then difficult time making a decision.  I lean one way for lumpectomy then I lean another for mastectomy but understand that even with a mast, that cancer can return to the same chest area.

    Another thing to consider is I have a left hip implant and have to protect it as multiple surgeries might introduce infection although I'll be given antibiotics for any surgery. 

    Please help shed some light.

    Juanita 

  • gillyone
    gillyone Member Posts: 495
    edited July 2010
    MBJ-  we love being in Idaho and have lived here for 24 years. I understand your concerns about it being very conservative and generally speaking, Idaho is a very conservative state. However, we live in a small college town (Moscow) which is like a little liberal island in the sea of conservatism. Which is not to say everyone here is liberally minded, but more than other parts of the state. My husband teaches at the University of Idaho and that's why we're here. Both our boys were born here. We've had 2 sabbaticals while here. The first was a year back in England when the boys were little and then the winter of 09-08 we "summered" in NZ, just the 2 of us. (And found bc soon after our return!) Lots of positives about living here but it is not for everyone. People seem to either love and stay a long time, or can't wait to get out!!

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