Tavish, thank you for the warm welcome. I have just been spending time reading other's posts. Congratulations on your 5 years.
I don't live in New Orleans. I had my surgery in New Orleans. I traveled there especially to get to Dr. DellaCroce, so that he could do my diep recon.
Yes, those dates are imbedded in my mind. I don't think I will ever forget them. I'm thankful to have gotten the taxotere and would do chemo again, if I had to...but it sure caused after effects. I feel like an 80 year old woman. Take care.
Just saw your Q about the taxotere... have you tried glutamine powder? Check with your onc first, but my onc (and the ladies here) suggested glutamine powder 3x/day mixed with OJ... I took it the day before thru 3 days after the taxotere treatment and it really helped (I did forget one cycle and found the achiness to be alot more!!) Glutamine powder is an amino acid powder that helps with joint achiness/stiffness and can be found in any health food store (like GNC at the mall). Be sure to get your onc's blessing, as there may be a reason not to take it that I'm not aware of.
Good luck! and I am er-/pr- too!! welcome to the club.... we're a minority compared to the er+/pr+ gals but we're still kicking! (i am 3.5 yrs from dx with Stage II, 4.5cm tumor, 5 of 49 lymph nodes positive)
Hi Lori. Hi Wackygal. That sure is a funny name. Sounds like me
No, I don't live in Louisiana. I live on the West Coast. I just traveled to Louisiana for my surgery. I read so many posts in so many forums and I see that so many women have the same issues, when they have had taxotere or taxol. When they bring the side effects to the attention of the docs or nurses, a lot of the time they are told that the problems they are having are not from the chemo, as it is not listed as a side effect. Okay, it's not listed, however, women are still having the same things happening to them...arthritis, back problems, sciatica, stiffness, etc. It HAS to be from the chemo. I ended up with two herniated disc, 3 days post my last taxotere. The discs pressed on my sciatic nerve and cause a horrid case of sciatica that lasted for months. I felt like I was in labor 24/7 and pain pills would take only a slight edge off. What a miserable time that was. Now I read about so many others going through the same thing.
I never tried the glutamine powder, but I did hear about it. There was a reason I didn't get it, but I don't remember what it was. I finished chemo in April, 2003. I have some glucosamine and chondrotin, but I don't take it regularly. I heard that it works pretty well, but you have to take it for a while. I am going to have to get back into my regimine.
That is just so wonderful on your years out from treatment. I wish you both continued blessings. I look forward to getting there.
Take care of you
Hi MK, thank you. Yep I certainly have been there, done that. I will be very happy to answer any questions anyone may have. So many women are not aware of skin-sparing mastectomies and diep reconstruction. I sure would like to let them know that they do not have to have their entire breast removed anymore. A skin-sparing mastectomy, with diep reconstruction leaves your breast so close to normal that, aside from the scars, no one will know your breast have been modified, unless you tell them. So, again, I will be happy to answer questions about diep, as well.
Yeah, all of the problems have come from taxotere. Prior to chemo, I could run, jump, exercise, etc. I had 4 AC and painted the interior of my house. I had 4 taxotere and all I do is hurt. All day, everyday...even though it is much better than it was. I don't have as much of the pain and aches in my muscles and bones as I did, however. I have all of the stiffness with some bone pain, now and then. My back hurts everyday and the chemo has settled in my tailbone, so I have coccydynia. Then there is the problem with my left arm and bad sinus problems, with face and headaches. I never had any problems like that before chemo. All started after chemo. Now, if all of that would just go away, I would be CLOSE to normal. I know I will never be 100%. I look at all of this, however, and I am thankful to be alive. Would I change anything...no. If I ever need chemo again...I will do it again...and complain some more
8 years??? WOW!!! That sounds like such a lot of time to me. How fortunate you are that you didn't have to go through all of the crap. Congratulations to you and continued blessings.
Many Blessings for the New Year
Life may not be the party
we hoped for,
but while we are here we might as
Thank you, Candy. As strange as this may sound...I was happy to have my mastectomies. When I first found out I had cancer (doc called me on the phone, with path report, per my request, after core biopsy), I went to my first appt, after the diagnosis, and told the surgeon I wanted bilateral mastectomies with diep recon. He asked me what the accronymn stood for. I knew he wasn't going to be doing my surgery. There weren't any docs in my area that were very experienced with diep, so I traveled 6 hours south and met with another doc in my private HMO. Of course they want to do the cheapest thing. Right off the bat, I told this doc I wanted bilateral mastectomies. He told me I didn't need a mastectomy, that I needed only lumpectomy and he wanted to save the breast. I let him talk me in to that lumpectomy, thinking he knew what was best. He did the surgery and did not get clean margins. I had multifocal points of tumor and extensive angiolymphatic invasion. He recommended mastectomy, which was what I asked for in the first place. He told me I needed to have chemo first, as I couldn't put off chemo to have mastectomy and take the time to heal. I needed the chemo as soon as possible. I came back home and started my chemo. This allowed me to do more research and I found Dr. DellaCroce. I sent an email to the office he was in, at that time, that said, "HELPPPPPPP!!!!", in the subject line. I just thought I would get a response from one of the office staff. I was really surprised that he answered the email personally. I had sent it because there were only two docs in my HMO who had done diep's. They had done only 10 over a three year period. They had a 10 percent failure rate and took 12-18 hours to do the surgery. I was not going to let these docs do my surgery um, um...no way. My HMO, which is a private hospital with all of its own docs, would not let me out of network and said that the care they were offering me was adequate. Having a medical background, myself, I knew that the care they were offering me was substandard, so I challenged them on it and we battled. Well, Dr. DellaCroce did everything he could to help me. Even wrote the board a two page letter. My HMO still would not let me out of network, so during the open enrollment period, at my job, I switched insurance companies. After my chemo, my onc sent me to rads, even though I was having mastectomy. Rad onc told me mastectomy was not necessary, if I had the rads. I said, "Nope...they've got to go" So rad onc did rads, anyway, even though I was having mastectomy to keep the cancer from coming back in the skin. I waited 7 months to heal and then flew to New Orleans to have Dr. DellaCroce do my diep. You see, I did not want to have to consistently worry about finding more tumors in my breasts. I was constantly feeling them...all day, everyday. It was too much. I didn't want that constant worry. Having bilateral mastectomies, for my mental sanity, was the best thing I could do, for me. I love my new breasts. They look better than the ones I had before. I think Dr. D. is a genius. So, Candy...I, too, was very blessed. Though it was not the only treatment available to me, it was my choice and I understand what you mean by being blessed. Take care of you.