Welcome, Cindy802....

Diseases & Conditions Breast Cancer
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Hi there...I saw your post in the roll call list, and we're glad you found us!  I did not have taxotere/ taxol, so I cannot offer any tips regarding the aches....but offer a gentle hug instead.
 
You are funny with all the dates you mentioned, I can name all my dates too....surgery and diagnosis 11/30, sentinel node bx 1/14, chemo began 2/8....etc....I just hit my 5 year mark and my 36th b-day, and hope to celebrate your 5 years with you.
 
You may be the first one here from New Orleans, but we have a lot from Texas too.
 
L&H,
Lori

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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.

 

Cindy

I would like to know...Where is the cure???
truefacesofbreastcancer.org

3
Cindy...are you elsewhere in Louisiana? I am actually in Houston right now, visiting my parents. My name is Lori, Tavish is my dog's name. Can you tell who rules the roost in my house? You may consider reading our roll calls, to see who has a similar situation or geography...
Lori

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Hi Cindy-

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)

hugs

stefanie

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004

5

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

Cindy

I would like to know...Where is the cure???
6
Hi Cindy, Welcome. You sound like an old hand at this stuff and have some good experience. The special diep flap surgery is still fairly new and you sure can help with the info. I am sorry you have so much pain with the side effects. Sounds awful. I hope in time it will lessen but damaged to discs is not good. Was that caused by the taxotere or ???? I have had sciatica and it is painful. Thank heavens mine did not last long. I passed eight years last October, but then I did not have a very aggressive form of cancer and a mastectomy was all the treatment I had for it. No chemo, no rads. I was also older when diagnosed. Hugs Mary K or MK for short.


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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.

 

Cindy

 

I would like to know...Where is the cure???
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Welcome. Your experience will enhance our little group. I had to have a mastectomy. It was the only treatment for the type of cancer I HAD. I was blessed.

Welcome again,

Candy


Many Blessings for the New Year

 

 

Life may not be the party

 we hoped for,

but while we are here we might as

well dance.
   

9

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 skull 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.

 

Cindy

I would like to know...Where is the cure???
10
Cindy, just wanted to say hi. You sure sound like you've got everything under control. I am sorry that you have had to join our club, but glad you found the board. Like MK, I am another one who is 8+ years out from treatment. I had lumpectomy in 1996 for 6 mm tumor, radiation and tamoxifen for 5 yrs. Doing just fine, thank you. Good luck to you. We have other board members who live on the west coast, a couple in California and one in Washington. Good to have you with us. Hugs, Lauri

"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.

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All of these wonderfully warm welcomes are so appreciated. 8+ years out of treatment...that is just so wonderful and encouraging to hear. I wish you continued blessings, as well. I'm all into complimentary medicine, so I do a lot of supplementation. I've been pretty bad, lately. Eating junk. I am going to get back into my regimen next week.

TO ALL OF MY NEW FRIENDS...HERE'S WISHING YOU A WONDERFUL AND HEALTHY NEW YEAR.

Cindy

I would like to know...Where is the cure???
12
Hi Cindy,

I posted yesterday to welcome you, but it didn't post because I got kicked off the net. Anyway, I'm on the west coast too, and my HMO is Kaiser. I had a lumpectomy about 15 months ago, and then 4 rounds of AC and 31 rads treatments. It sounds like you're doing a wonderful job going through all this. Just wanted to welcome you and let you know I care.

Hugs,
Rita

13
Hello Cindy:
 
I'm Ellen, about a year and a quarter on the board, done with the surgery (Lumpectomy), chemo (AC-T), and rads (36).
 
The taxol, for me, was horrendous.  Felt like I was getting hit with sacks of flour!  I had to use Vicodin, but that made life manageable, and I was able to work while on it.  I started to know when I would be bad, what days in the cycle, and took it before it got bad. 
 
It really let me move and live.
 
That's It for my experience. 
 
Keep on posting, I'll try to look for you

"Our greatest glory is not in never falling, but in rising every time we fall." -Confucius

Ellen

14
Hi Rita. Hi Ellen. Thank your for the welcome. The AC, for me, was a piece of cake. Many women say AC was horrid and taxol/taxotere was easy. I found it just the opposite. I had good anti-nausea meds, with AC (Kytril) and did quite well. Painted the interior of my house while going through AC. Taxotere was a different story. I worked all through chemo and would manipulate my days off so that I didn't have to use sick time. I saved all sick time for surgeries. Anyway, my crash days on taxotere were on days 3 and 4. I work a 4/10, with my normal days off on sat, sun and mon. On chemo week, I would work on Monday and take Friday off, instead. I would have chemo on tues, work wed and thur...take friday (crash day) off, with sat being the second crash day. I'd start coming back to life on sunday and had monday to recoop and would go back to work on tuesday. When I would crash, every bit of energy would be zapped out of my body. It was an effort to walk to the bathroom or to open a zip-lock bag. Then I would bounce right back. I remember laying so listless in bed and watching tv. "The Nanny" became my 1:00am show. I had never seen the sitcom before and came to love it. The tv stayed on all day and all night. It kept me company. Now, I have to sleep with it on, whereas I never did prior to chemo. Couldn't sleep with the noise. I watched the start of the Iraq war. So many memories. Outside of "crash" days, I never lost any energy all through surgery, chemo or rads. I've always kept my energy level and did not have fatigue. I was lucky in that respect.

I would like to know...Where is the cure???