Below are Stefanie's responses to some of the questions posted through this site. We hope you can benefit from her insight as a breast cancer survivor.
In Ask Stefanie, inquirers are asked to submit questions and comments relating to their personal cancer experience. Appropriate messages may be responded to and posted. The information provided is not intended to replace medical advice. For more information or a physician referral, contact The James Line at 1-800-293-5066.
If you would like Stefanie to make an appearance at an event, please call
(614) 293-3744.
Last chemo treatment was June 14 2007. Just finished last herceptin treatment May 12 2008. I still hurt all over especially in the arms and legs, when does it go away! Also hair is very curly does it get back to normal? Thanks for any advise.
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Anonymous
Thanks for your questions. I'm not sure why you hurt. Is it from taking Taxol? If so, the pain may decrease, but some may remain. It may sound strange, but the only time I really notice my neuropathy these days is right before I menstrate. No one has told me there is a correlation, but that's just me putting two and two together. I have lost my hair three different times and only once did it come back curly and different from my "usual". It stayed different too, but I loved it. It was fun to have the hair I always wanted. I lost my hair since then and it's now again straight. You'll get used to it. I found when it was short and curly I needed to learn how to use products I wasn't used to using. It helped with the puffiness! I'm sure you agreee that any hair is good hair! Take care, stefanie
I want to thank you for saving my life. When you were diagnosed in 98 and your story was airing on the t.v. something told me that I needed to start doing my self breast exams, as soon as I did was when I found my tumor. This was in December of 1998and I was 31yrs. old. I had a mastectomy in Jan 99. I am her2neu positive and had 18 of 23 lymphnodes positive. I had a round of chemotherapy Adramicin/Cytoxin, bone marrow transplant at the James (they now don't do this for breast cancer patients)and radiation, then I was on herceptin every week for 1 year with a low dose of taxol. My treatment plan was about a year or two. Everything was great for me it was clinically gone until June 07 when it finally showed back up again. This was so devasting to hear these words again knowing that this will now not be cured. On my Pet scan it showed that I have activity in the soft tissue of my chestwall and surgery is not possible right now because it is behind my tram flap reconstruction. I have been on a treatment plan of Herceptin/Navalbine, still my CEA was rising. So I was then put on Herceptin and Abraxane and my hair thinned out it looks so bad. I just had a recent Pet scan on Wednesday, April 30. it showed that I had decreased activity in the recurrance areas, but now have newly increased areas of activity, still it doesn't show in any of my organs or bones. I was just now put on Herceptin/Avastin/Gemzar. I have been very worried that I have been on several different drugs in the past year and still we haven't found what will stablize this. The doctor and nurses said that it is just a matter of time that they will and feel that this combo will do the job. I too believe that this is in Gods hands and try to stay very upbeat and positive. I stay very busy with my children now 17 and 15 I also have continued to work all through my cancer treatments in the past and present although some days are difficult. Thank you again for having your story out in the public, because I don't believe that I would probably be here and to have been in my childrens life for almost 10yrs. now. Thank You!
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Beth Cook
Thank you for your email. I am humbled, but don't take any credit. There's a reason you are here 10 years later. There's going to be a reason you are here 10 years from now too. I am sorry about your recurrence. I understand how difficult it is to hear those words the second time around. If I can look at the positives for a minute, remember this....if it had to come back, a local recurrence is the "best" place b/c it is not in any organ or in your bones. Praise God. Hold onto those positives. They should bring you hope. Herceptin is a wonderful drug. I was on it for over 7 years. There are so many drug options for you, don't worry if you change it up. It won't hurt anything by doing so. We are fortunate to be living with cancer in this day and age when research continues to pump out new advanced treatment options. All the best to you and your family! stefanie
How can you nominate someone for Stefanie's Champions?
Thanks,
Joyce
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Joyce Zawaly
Thanks for asking! There is (or will be soon, if not)a nomination form on the James website. Find my link on Ways to Give or Events. You'll find it. Thanks for your interest. All the best, stefanie
Stephanie
Are you HER2-neu positive? I have been diagnosed with a recurrence of breast cancer in my spine. I've completely changed my diet, increased my exercise to a daily routine, and try to keep an upbeat attitude. What do you attribute to your success in weathering the cancer battle? I read everything I can get my hands on but there is so much conflicting information available, sometimes it is difficult to determine which data is accurate. I am currently being treated at The James in Dublin and feel I could not be in better hands. Thanks for any support you can provide.
Chris Zimmer
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Chris Zimmer
HI! I'm sorry about your recent recurrence. Those words are tough to hear! Yes, I am Her2-neu. I took Herceptin for over 6 years and now I am on Tykerb. Being Her2-neu used to be so bad. Now, because of these new drugs, it is more manageable. Research is so important for all of us! I ask myself that question a lot, why am I still around, when so many of my friends are not? I'm not sure. I try to do the right things...eat right, exercise....but I'm not perfect by any means. My faith has seen me through a lot. God has a plan for all of us. All the best, stefanie
Stepahnie I want to nomijate my wife as a Hero. How do I do so? I am a 3 year leukemia survivor who just has a transplant. I met you recently and thought you were amazing, your inspired me
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greg rose
Great! Thanks! We are getting ready to honor our 2008 Champions next week, on Wed. the 23rd at the Columbus Convention Center. We'd love for you to nominate your wife for our 10th anniversary Champions event in April 2009. Our nomination form should be available on the James website and if it isn't it will be very soon. Thanks again and all the best to you! take good care, stefanie
My niece, who just turned 49, found out last August that she has breast cancer. She had a tumor about 3 centimeters in her breast which they surgically removed and she completed radiation treatments followed by chemo which was finished in February. She goes monthly for checkups and when she went March 12, they did testing for HER2 and she was just told yesterday that she is HER2 positive. She goes to the oncologist this Friday (April 11). Did you have to deal with HER2? I have been trying to educate myself about breast cancer, but I had not yet heard of this until she told me last night.
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Kathy Taynor
Hi! Yes, I am very familar with HER2Neu. I am positive with that too. There's two ways to look at it. Typically, being HER2 positive means that the cancer is more aggressive. However, due to the medicine called Herceptin, that may not be the case. About two years ago, FDA approved Herceptin for people like your niece to get right after they are diagnosed. Before that, such as in my case, it was given only after you had a recurrence. I would suggest having your niece get on Herceptin!!!!!!! I believe they are taking this drug now for a year. It has NO major side effects....no hair loss, no fatigue, nausea, etc. Some people can have heart problems, but that is rare. It is not like chemo. It's different. It's easy. It's a gift!!!!!! It is normal to check for HER2Neu right after surgery these days, when the pathology report comes back. It's standard even. I don't know why they would just be informing her. ?? My best to you all. stefanie
Hi Stefanie,
I met you for the first time this past October in Greensboro, NC at the Friends For AN Earlier Breast Cancer Test. Your talk as well as your Husbands' was so inspirational...
Thank You both for all you shared!!!
I am really leaning on your words of HOPE these days as I was just recently Dx. with Stage 4 Breast Cancer. I am 41 with 2 small girls . I am in the phase of seeking treatemnt options...
Who is your Doctor at the James???
I used to live in Columbus and just moved here 3 years ago. I have Family in Columbus also. I would appreciate any feedback you can offer.
In much HOPE,
Diane
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Diane Darnell
I am so sorry about your rediagnosis. Hearing cancer the second time is so difficult. There IS so much hope however. My doctor at the James is Dr. Shapiro...a gem! Are you Her2Neu? There are so many treatment options out there now...too many to name even. Where did it return? I think getting a second opinion is a great idea! Surround yourself with those you love and lean on God. You will get through this too!!!! Feel free to email anytime. I am here for you. all the best, stefanie
Hi Stefanie,
My girlfriend of 6yrs has been recently diagnosed with stage 3 breast cancer in one breast,we are scheduled for a second opinion next week with Dr. Carson and Dr. Miller with the James. Her battle has yet to begin or has it, the mental aspect and anticipation of the long road to recovery is weighing in. How do I help at this stage, do I help her decide which course of action to take and which doctors she should decide on, or just be supportive in the decission that she makes.Everyone is in her corner but at this stage she just wants to control every aspect and not to talk about her situation. It was a battle to convince her about seeking a second opinion, reconstruction options ect.I understand this is all about her as she conveys and I agree 100%, I just want to help in anyway possible to help ease her pain , anger, frustration, anxiety ect.
Would you suggest we take a week vacation down south before surgery which will most likely be April 11, or would it be best for her to continue working 70hrs a week and being focused on her work as I do.
It's not my intention to be long winded, but I have alot of questions along with my better half and I'd appreciate your insight. You're a Saint for doing what you do ! God Bless You, Chris(huge OSU fan) and your Family,
Warm Regards,
Todd
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Todd
I'm sorry to hear about your girlfriend. You sounds very caring and having her best interest in mind. You can't go wrong with that. In my opinion, you are in one of the most difficult stages of the whole diagnosis....waiting. Waiting for surgery, checking out options, waiting to find out treatment, etc. I like to know and be acting on a "game plan", if you will. She must decide how to spend the next week. I don't blame her to want to keep her "normal". Right now, with a cancer diagnosis, she's being told she isn't "normal" and that's hard to take. The sun and a change of scenary are something to look forward to...you could always postpone. The best thing for you to do is be there for her, without being needy. If she wants to talk, great! If she wants to cry and not talk, lone her just your shoulder. If she wants encouraged, cheer her on! Everyday try to read her mindset....it will change from day to day...sorry. Please hang in there with her and be patient. She will love you more for it and you can come out of this experience closer as a couple than before. Thank you for caring for her! You won't regret it! Feel free to write anytime. All the best to you both, stefanie
Why is it so hard to find a support group for cancer survivors?
I've called & left messages, tried on line and get referred to yet another site. Isn't there a list somewhere that has when and where the support groups meet? I just want to go to one to know I am not the only one feeling what I am feeling.
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Nancy
I'm sorry you are having trouble. The James offers many support groups. All through their support programs called JamesCare. All hospitals have their own group offerings. The Wellness Community offers support groups as well and is not affiliated with a particular hospital. Don't give up. You will find one, don't give up. I have been in my support group for over 9 years and I'm thankful for it. It helps so much to be able to talk with people that have walked in your shoes. All the best, stefanie
My daughter had a very rare bone cancer (osteo sarcoma)which was located in her upper jaw bone. She had it removed and celebrated her 3 year anniversary. Last week at her 3 month check up her xray showed 2 masses in her lung. it was hard the first time but this time the waiting and the thought of what is ahead has just about done me in. How did you cope with a second and a third time? My daughter has a 6 year old and twin boys 3 1/2.
Jeanne
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Jeanne Godden
I am so sorry to hear about your daughter. I'm not sure, but if you're daughter is the same gal, I just sent her an email yesterday...a friend of a friend thing. As a mother, I can't think of anything worse than having something harm my children. That is what you are going through and my heart goes out to you. For me, hearing cancer the second time around was worse than the first. I was too educated by then. I knew the stats, I knew that the cancer would never be "cured". Those words are hard to swallow. Sometimes I didn't cope very well. I always felt a little better when I had a treatment plan underway. Knowing I was being proactive to get rid of the cancer brought me hope. There is also the blessing of having young kids around that need homework done or read to or taken to gymnastics, or put to bed. Meeting my children's needs during a battle wasn't always easy, but it did help to get my mind off of feeling sorry for myself. Let me tell you that in March it will be 7 years that I have lived with metastatic breast cancer to the lung. It has never gone completely way. It has remained small from chemo and stable. I am living a full, meaningful, happy life, despite my disease. I lean on my faith to carry me. I cannot handle the load. I pass on my burdens to God and it frees me to live with peace, despite not knowing what lies ahead...but no one knows what lies ahead now do they? Please find hope in the right treatment plan for your daughter. She needs you to be strong. We still like our moms to tell us that everything is going to be okay. Take good care of yourself and your family, stefanie
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