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Hi everyone, my name is Tracy and I'm from Michigan. It's been awhile since I've done this so bear with me...I used to post on another message board about 5 or 6 years ago. I'm happy to see some familliar names here, so I'm hoping that even though its been a long time, some might remember me. (thanks again Lori, for responding to my post on the other board. )
)I was diagnosed in 8/99 invasive ductal, 14+ nodes. I had a mastectomy (with reconstruction that failed) and chemo (AC, taxol, herceptin) and radiation. Shortly after I finished treatment the following year, I began having back pain and was dx with mets to the bone and lung in 8/01. The tumor in my spine was bad...it fractured my T9 vertibrae and I had to have reconstructive surgery to my spine with rods and pins. They removed one of my ribs to access that area of my spine. I still have chronic back pain from all that. At the time they also saw a tumor in my skull and a small lesion in my lung, but they were stable at the time. I was put on chemo again, this time Herceptin, Navelbine, and Zometa every two weeks, then every three, and I've pretty much been on chemo ever since.
The summer of 'o3 I started having headaches and my scans showed the tumor in my skull was growing rapidly dispite my regular chemo txs. I underwent radiation to my skull but it only kept it stable for a few months. I began to have chronic pain again, and scans showed it grew larger than before, so this past spring (April 18, 2005) I underwent surgery to remove the tumor. They removed 40% of my skull and I had reconstructive surgery to give my head and face a more normal appearance. The tumor was on the left side of my head and went down into my forhead as far as my left eye. The bone around my eye had to be removed as well as the left side of my forehead and they rebuilt my eye socket. I know is sounds like a frankenstien movie, but they really did a great job putting me back together. Most people who don't know me and who see me don't even know I've had surgery. I do have patches of hair that are gone and have been slow to grow back.
They took me off chemo for this last surgery and I've been off it since, and I'm dreading going back. I hope to get some advice or some of your personal experiences about taking a break from treatment. I still am not 100% from the surgery and everytime I think about going back on chemo, my heart sinks. I just am so tired and I don't know if I'm ready to do it again. Has anyone else felt this way? My family is anxious about me being off it these months and they are ready for me to go back on, but I'm not. I'm not giving up by any means, and if I had any new symptoms, I'd be on the phone with my onc the same day. But I don't really know how risky it is to stop treatment for a while. Has any one tried it? How long were you off? Did you get scans in the meantime? My onc and I have discussed this in the past and she really doesn't press me one way or the other...she says the decision is up to me.
If you can help, I surely would appreciate it. I'd also like to say hello to anyone who might remember me...I don't know what I would have done that first year I was diagnosed without the support of that group of inspiring women. You got me thru some of my darkest days. I'm hoping to find a friendly place here as well during this crossroads in my treatment. Thanks for listening. I welcome emails.
Tracy
HELLLOOOO, Tracy! Glad you found your way here! You may want to check out our roll call at the top and see who you remember and who is new. This is a great group here, as you know....Cathi is facing similar issues as you are, in terms of what to do with chemo, hopefully she will weigh in too (Luci says she is on vacation now, so not sure when she'll be able to check in)....Our activity level here goes in spurts, so if the replies are slow, check back again.
And hopefully you will get lots of support and feedback and maybe a laugh or two here.... whether here or any other board, you know that we BC sisters want to be there for whoever is in need!
I'll email you back when I can!
L&H,
Lori
And hopefully you will get lots of support and feedback and maybe a laugh or two here.... whether here or any other board, you know that we BC sisters want to be there for whoever is in need!
I'll email you back when I can!
L&H,
Lori
Welcome to an old friend!!! I am glad you found us, thanks to Lori. Oh my but you have been through a lot!!!! What a strong young woman you are to have dealt with so much in so short a time. Bless your heart!!! I hope you will find some good support here, too. Many of your old friends are here, but not everyone weighs in every day, so it may take a week or two to hear from many of them. I will keep you in my prayers as you face this new decision. As Lori told you, Cathi has had problems with bone mets and the chemo was very hard on her other medical problems, ei diabetes. She has taken some time off this summer. We have a couple of women who have taken some time off treatments to regroup and then began again. I hope you will feel at home here. Hugs, Mary K. (MK)
Tracy, it's so good to see you here. I have no advice for you, hon, just a big hug and smile. From your post, we can see why you haven't been here sooner!
Take care and post as often as you feel up to it.
Hugs,
Becky
Tracy,
I'm glad you found us here. I can't believe what all you have been through. I would think with your onc's ok, you could take some time off to recover your strength. I can only imagine how tired you are physically & mentally. Stay with us and let us help you with the burder....
Hugs,
Julie
I'm glad you found us here. I can't believe what all you have been through. I would think with your onc's ok, you could take some time off to recover your strength. I can only imagine how tired you are physically & mentally. Stay with us and let us help you with the burder....
Hugs,
Julie
Do not go gentle into that goodnight,
Rage, rage against the dying of the light.
~Dylan Thomas
Hi Tracy! My name is Deb. I am fairly new to this board but not to bc,unfortunately. Wow,you have really been thru it. What a strong and remarkable woman you are. I am so impressed w/ the strength and determination that you have shown dealing w/ the bc.
I was originally diagnosed in 2001. Modified radical mast. w/ 19 of 21 lymph nodes positive. Stage 3. 4 A/C, 12 taxol, 36 rads. October 2003 was rediagnosed w/ mets to the bone (small spot on sacrum) and it was the same cell as the bc. I have been on Navelbine, Herceptin weekly since. I was on the Zometa but have been taken off it because of the findings of it causing the jaw bone to die. I haven't had a complete break since I began. I have had 3-4 months off the Navelbine but continued the herceptin. My cea counts would remain level for this amount of time and then begin a small climb. I would then begin the Navelbine again. I have found both of these to be fairly easy drugs to tolerate. The worst side effect being the neuropathy in my feet and the muscle cramps. I have had a couple of times that I just flat out didn't want to go to chemo. I called and told them I would not be there...that I needed a "mental health break". My onco didn't have a problem w/ it. I can understand how you are dreading beginning the chemo again. Esp after all you have been thru. I have had days where I wonder why I continue w/ the treatments. I think this is a normal feeling. But, when I look at my 3 granddaughters, my new grandson and my dd's and sil, I know why I continue. If you aren't feeling like you have completely healed, then wait. This is your decision and yours alone to make. I believe that if your tumor tag tests are in the normal range, then let your body rest and get built back up. Talk about this w/ your onco and see how she/he feels. Then weigh your options and do what you think is best for you.
hugs...Deb
Thanks Deb, I really appreciate your input and for sharing your experience with me. Thank you too, Lori, Mk, Julie, and Becky for replying and for the warm welcome. It's so great to talk to someone who really understands and knows what you're going thru! Looking forward to getting to know you all better.
Thanks again for the support,
Tracy
Thanks again for the support,
Tracy
Hi all
Iam new to this and would like to have people to talk to that are going through or have gone through what Iam going through now.
Tracy I feel so bad for all you have been through, and I have no advice since I was just diagnosed 6 days ago. I have infiltrating ductal carcinoma my surgery is scheduled for the 25th. I don't know much more than that until after surgery. Im scared but positive that all will be well it just might take awhile.
By the way my name is Bernadette Iam 45.
Thanks for listening
Iam new to this and would like to have people to talk to that are going through or have gone through what Iam going through now.
Tracy I feel so bad for all you have been through, and I have no advice since I was just diagnosed 6 days ago. I have infiltrating ductal carcinoma my surgery is scheduled for the 25th. I don't know much more than that until after surgery. Im scared but positive that all will be well it just might take awhile.
By the way my name is Bernadette Iam 45.
Thanks for listening
Hi Traci,
Im fairly new to this site too, and still under going treatment.Im also from your neck of the woods here in Michigan.I wish I had some advice to give you, but more importantly just wanted to send you well wishes.It sounds like you have traveled a long road, and I can feel the strength in your words.I hope some of the other ladies can give you the advice you need.
Best wishes
Michelle
"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle." -Albert Einstein
Im fairly new to this site too, and still under going treatment.Im also from your neck of the woods here in Michigan.I wish I had some advice to give you, but more importantly just wanted to send you well wishes.It sounds like you have traveled a long road, and I can feel the strength in your words.I hope some of the other ladies can give you the advice you need.
Best wishes
Michelle
"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle." -Albert Einstein
Michelle & Tracy, if memory serves me, you two may be closer geographically than you realize. I am not exactly sure where you each live, but I think you are neighbors. You may want to chat off line and compare notes.
I'm way over "out East" compared to you guys.
L&H,
Lori
I'm way over "out East" compared to you guys.
L&H,
Lori
bump....