Recently Diagnosed TNBC

Options
2»

Comments

  • MarlyD
    MarlyD Member Posts: 41
    edited September 2008

    Hi Flalady,

     Well, I had my second round of Cisplatin/Avastin on August 27 and am still not feeling quite right--mostly the ringing in my ears, which went away for the most part after the first round, but has not this time and I am so bothered by it I am considering stopping the clinical trial.  My third round is scheduled for next Wednesday, the 17th, but I am so afraid of adding to the ringing I am now experiencing.  I don't want to jeopardize my chances of beating this thing, but I don't think I can deal with the cumulative effects of the Cisplatin.  I am planning to talk with my NP or oncologist tomorrow about this.  It would mean jumping to surgery sooner, though I haven't decided on whether I would do a lumpectomy and rads or bi-lateral mastectomy.  I have a genetic counseling session scheduled for October 2 (originally was September 22, but that's only a few days after I would have had the third round and is one of my "bad" days, so I rescheduled).  I have a lot of ovarian cancer and some breast cancer on my mother's side and need to know how I should proceed.  I am leaning toward the bi-lateral just to give myself every chance I can.  The treatment I would have gotten after surgery on this trial is Adriamycin, Cyclophoshamide and Avastin for 4 cycles (every two weeks), then Avastin OR Avastin and Paclitaxel for another 4 cycles.  If I do the mastectomy, does that eliminate me from having radiation as well on the "bad" breast?  If I drop out of this, I don't know what kind of treatment they would be looking at doing.

    Maly

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    Marly,

    I sorry you having a bad time with this chemo combo.  I still a good thing you got two of them under your belt.  I'm with you...if the side effects are that bad change the chemo combo.  There are a lot of chemo's left for your doctor to pick from.  I'm also with you about the bi-lateral, I have a lot of regrets not doing a bilt the first time.  About rads...the pretty much want to give all bc ladies rads. (standard protocol stuff...) But let me explain something I have learned about chest disease....I was told by a top bc surgeon that if you do rads that the chemo has a hard time trying to delivering enough to this area should you need chemo again to tx this area..  This is due to damage tissues and blood cells from rads,now the chemo can not be delivered in a large enough dose to be effective.  The other side is rads... returning bc will be confined into a web of damaged tissues to slow the progression.  So rads to me are a lot bigger questions for us with chestwall disease.

    Let us know what you and your doctor's next step will be.  Adriamycin is what most of us do as a first part of TN protocol, so he will probably want to use this.  Please let me if I can help youi in any way.

    Flalady

    · Share on FacebookShare on Twitter
  • MarlyD
    MarlyD Member Posts: 41
    edited September 2008

    Flalady,

    Thanks for your support on this.  I'm just so confused right now.  As I said, I don't want to jeopardize my chances for the best possible treatment, but the side effect of ringing in my ears is very distressing to me and the thought of cumulative damage 2 more rounds--I don't think I can do it.  From all that I've read from ladies who are NED, I haven't seen anyone on Cisplatin, it's been the ACT, which I suspect is what my oncologist will put me on.  Again, with the bi-lateral, it just makes me feel like I have a little control over this by removing the breast tissues.  I don't know what will happen as far as the rads, it's just so much to process.  The tumor has shrunk considerably on the 2 rounds I have had, but I've also read that Cisplatin commonly does this, but the tumor cells quickly become resistant to it, which is why, I think, it's only given for 3-4 cycles as well as because of the toxicity.

    I will be e-mailing my nurse practitioner today to let her know that I am considering stopping the research protocol and get some ideas on what my options are now.

    I will keep you all posted.

    Marly

    · Share on FacebookShare on Twitter
  • bunnyrabbit
    bunnyrabbit Member Posts: 22
    edited September 2008

    Hi ladies I am back (I been on the just dx site)  I start chemo on Sept.22 T/C (I think that is Taxotere and Cytoxan will check with Onc on the 15th where I attend a class for an hour). Four round every three weeks and then Rad.  Do you know anything about the side affects of these drugs, do any of you wear a wig, and what is a shopping list? Thanks

    · Share on FacebookShare on Twitter
  • MarlyD
    MarlyD Member Posts: 41
    edited September 2008

    Hi bunnyrabbit,

     Hope you're doing OK.  I am on Cisplatin/Avastin neo-adjuvant treatment so I don't know anything about Taxotere and Cytoxan . . . yet.  That will be after surgery that I'll get along with Adriamycin.  The chemo I'm on now has not caused hair loss, though I did buy a wig in preparation of the ACT after surgery.  No other shopping list yet.

    Marly 

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    bunnyrabbit,

    Have you visted the chemo area. There are two very good list posted there. I did both of these with Adriam. also. My main side effects were fatigue and metal mouth. 

    Flalady

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2008

    MarlyD,

    How are your doing?  Just wanted to make sure you are doing ok?

    Flalady

    · Share on FacebookShare on Twitter
  • MarlyD
    MarlyD Member Posts: 41
    edited October 2008

    Hi Flalady,

    I am doing OK, will be getting my last Cisplatin round next Wednesday the 8th.  Had the Cisplatin and Avastin on September 17 and am just this week feeling better.  I'll be having just the Cisplatin next week because it's the last round of this neo-adjuvant chemo before surgery and I have to wait 6 weeks after the Avastin for surgery due to issues with bleeding.    The lump has shrunken considerably and my oncologist if very happy--I'm afraid to be too happy because I know it's in at least one lymph node and won't know until after they remove the lump and axillary nodes what the real story is.  At least 3 weeks after surgery (which will probably be around the first week of November), I'll start on Adriamycin, Cyclophosphamide and Avastin for 4 rounds then either just Avastin or Avastin and Paclitaxel for 4 rounds.  Then after that it will be determined if I will need radiation.  I have never had any surgery before and am nervous about that.  I was considering bi-lateral mastectomy, but not so sure now.  Will need to speak to my surgeon and oncologist to see what they think.

     How have you been doing?

    Marly

    · Share on FacebookShare on Twitter
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2008

    I'm glad you are hanging in there...I get fatigued just reading about all you have left to do. How is your fatigue so far? Your blood cells holding up? Eating well? How are your ear's doing?

    I know you will not believe it... my but surgeries were not all that bad for me.  It was more emotional than physical.  My last mast. I had surgery 3:00 Friday and was up and dressed when my doctor came in Saturday morning. I was home by 11:00 that day. I went out to dinner with a friend that night.  This was not as emotional because I knew what to expect when I saw my chest.  (If you can find anyone to show you their's I think it would be a big help!) My first was pretty emotional because my family was spinning out of control with the bad news of what was found, and the predication that were given too them about my life. I knew going in how bad but... no one would listen to me.  I knew I would be in treatment for a while from the start.

    I hope your doctor uses one of the new mobile pain pumps.  They wire it into your chest wall by a little wire that give you pain meds that don't play with your mind.  This thing is wonderful even though I only needed it for about three days. Also my surgeon had new kind of drug to put you out with so when you came too, you don't have the ugly lost feel.  The bottom-line it was not real painful because they cut so many nerve endings you go more numb them pain. 

    Be sure and ask if you can have a family member stay the night in your room.  Most places let you now.  I found this a wonderful security blanket know they were there in the room. I'm glad you do get a little break (even though you have surgery) so you can rebuild from the chemo's before starting another group.

    I hope this last chemo is easy for you.  Hang in there lady. 

    Flalady

    · Share on FacebookShare on Twitter
  • MarlyD
    MarlyD Member Posts: 41
    edited October 2008

    Thanks, again, for your words of support.  It always amazes me how much you have been through for so long and how positive you are! 

    The fatigue sets in around the 3rd day after chemo and stays with me until about a week or so before my next chemo--like this week I am tired when I get home from work, but not totally wiped out.  I feel weak/shakey/faint maybe more than fatigued.  They gave me a Neulasta shot to take after this last round because my white blood cells were borderline.  I have been eating quite well--actually put on over 7 lbs. since starting chemo, but gaining weight is the last thing I am worried about right now! 

    As I said, I don't know if I'll be doing the mastectomy or just lumpectomy and axillary node removal . .  I think my husband may stay with me overnight at the hospital.  My mom and sister will be there as well. 

    My nurse practitioner has told me the 3rd round of Cisplatin seems to be the toughest for a lot of people and that the adriamycin and cyclophosphamide is tough but not as bad as Cisplatin--keeping my fingers crossed that will be the case.  The ringiing in my ears was not too bad this time, thankfully Smile

    Take care,

    Marly

    · Share on FacebookShare on Twitter

Categories