CancerCompass message board discussion started by Linda Lou on 10/31/2006 http://www.cancercompass.com/message-board/message/all,7536,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I started Femera after a lumpectomy, six months of chemotherapy, and thirty-one treatments of radiation, plus 2 1/2 years of Tamoxifin for stage two hormone receptor positive breast cancer. I have had slow but steady hair loss since starting Femera with an initial severe bout with joint pain which has settled down but still there. My doctor thinks that my hair loss is probably from Femera but can't tell me whether it will slow down or what will happen with it. My hair has gotten very thin. I just got my hair to chin length after chemo and now it looks terrible! I am thankful for the treatment but can't help from mourning for my hair. Has anyone else had this problem??? Thanks, Linda Lou Linda Lou Tue, 31 Oct 2006 00:00:00 GMT I am on femera now. Ihave been since feb of this year. This is my thrid time with breast cancer but this time it has spread to the bone. I also had severe joint pain and hair loss. I had a full head of hair when I started this med. But it is thining out. Not enough for anyone to notice but still. But I have to tell you no matter the die effects I think femera is my miracle drug. That along with zometa and a lupron shot. I have done the chemo in the past so they are trying a differant treatment. After 8 months i am now in remission. SO keep taking femera. Being a woman losing our hair and breast is so hard. esp when you are young. I am 41 and going on 10 years of fighting this. But i will fight it 20 more years breastless and hairless if the medication works. get a short hair cut.. Do a cute sassy look. Thats what I did and it looks thicker. But ask your hairdresser and see what they say. But dont get down about the hair. If that goes along with the cancer....Its worth it. God bless you and hang in there Kim Kidznkim Sat, 04 Nov 2006 00:00:00 GMT I have never heard of hair loss happening from hormonal therapy. Janetv Sun, 05 Nov 2006 00:00:00 GMT Dear Kimberly G., Thank you so much for your thoughful response that meant so much to me. I have never joined a support group or even talked with another woman who has gone through treatment for breast cancer. This is the first time that I looked for a message board on-line or even looked anything up. I thought that no one was going to answer my question...so I was so happy and tearful to see your response. I am 54 years old now and was 51 when this treatment started. They took 13 lymph nodes and three of them had cancer..so I worry. My doctor says it will be four more years on Femera unless something else comes up. Other than the joint pain and hair loss the Femera is easier to take than Tamoxifin...for me anyway I felt like I was taken off of mild chemo. I participated in a drug study during chemo treatment with Xeloda, a drug only approved for advanced breast cancer. They want to see if it helps earlier breast cancer patients. It was a very difficult treatment because I took it in addition to all the other chemo drugs(Adriamnycin, Cytoxan, and Taxotere...Yuk! Have you taken Xeloda before? Have you ever suffered from nerve damage in your hands and feet? I got a severe case and have to take a drug called neurotin to manage the pain. It works pretty well as long as we can keep the dose down...on a higher dose it kills my creativity and I am an artist..so that is not good. I am thankful for the the non-narcotic help with pain management, though. I hope and pray for you that your new treatment will keep you safe. Your kind words and your incredible courage have helped me especially right now. I too will call Femera my miricle drug. (I started in Feb. too.) The study they stopped early so we can take it sure looks promising. Sorry for all the questions. It is obvious that I haven't really talked to another woman going through treatment accept just hello and so forth in the treatment room. I am lucky to have supportive family. Just one more question...if you don't mind answering; how did you learn that the cancer had spread to your bones? I have bone pain as it is and I don't think I would be able to tell the difference. Thanks again for your kindness. I greatly admire your courage. Linda Lou Linda Lou Mon, 06 Nov 2006 00:00:00 GMT I'm glad I could make you feel better. Im going to sneak my email in here and maybe you can email me before they catch it. You can find me at kidznkim on hotmail and yahoo I also have messanger. The taxatere gave me neruopathy... the numbness in your legs and the pain. I was on neurotin but it didnt help. I have learned to deal with it. Feels like little ant crawling from my calf down 24/7. I do take tylenol 3 as needed. I have two disabled children. one is 17 and in a wheelchair. So I do alot of lifting. Thats how we found the bone cancer. I thought I had pulled something in my tailbone. after a couple of months it was still there. Not a bad pain... just felt like a bruise. But because of my history and my amazing family doc he ordered me to have a bone scan. Thats when it showed up on one rib and pelvic. I had just had my 2 year check up and all my blood work was fine. Shows how much thats shows you. then a pet scan was ordered. From what I understand it will show cancer anywhere. After 3 months of hormonal treatment the oet scan showed it had shrunk in the tailbone and the spot on the rib was gone. Then this last scan had nothing on it. I still feel pain. But still like a bruise. But im like you with all the joint pain I would swear it had spread all over me. So now I have a scan in 6 months. Its so hard living like this. You just never know. My son that has autism said mon its like a volcano just dont know when it will erupt. He said it might stay dormant for a 100 years....hahaha I pray alot, I stay positive as much as I can. But I also have my nights when I just want to cry when nobody is around. My babie's need me and i will fight as long as I can. When this stops working i will have chemo again. That is something im not looking forward to. I have had all the chemo's you mentioned and cytoxin was the easiest. the other two are so hard. I havent had the xeloda. I dont know anything about that med. But as long as this is working and I pray for a long time. Im not making any changes. My oncologist, sister has been in remission 9 years from breast cancer after it had spread to her bone and liver. So I hold onto that. I would love to talk to someone that has had simular situation as mine that has been in remission a long time. Hopefully you catch my email on here... Like I said its kidznkim at either hotmail or yahoo.... same name on both. Look forward to talking to you. God bless Kim Kidznkim Mon, 06 Nov 2006 00:00:00 GMT Hi my name is christine and I am a 4 year breast cancer survivor stage 3 breast cancer. I had my right breast removed and was taking tamoxifen for 2-1/2 years. I developed severe side effects where I needed a complete hysterectormy because of it. I am now on Femara and all is fine. Its scary everytime something happens but try to remain positive. I remember when I lost my hair...I had to go to my granddaughter's first communion...and my hair was in knots...but I was saved by wearing a hat on that occasion. Losing your hair as well as thinning hair is quite difficult for any woman as we are judged by it as well as having breasts. I have come to full term as I did not have breast reconstruction because of side effects...but I am still alive to enjoy my family. Try to be positive as best as you can. I do a lot of praying and helping others in their fight against breast cancer. Please respond as we can keep in touch with each other....Live life.... Christine Natasha Mon, 13 Nov 2006 00:00:00 GMT My name is Christine and I am a 4 year breast cancer survivor who had right breast removed. I was on tamoxifen for 2-1/2 yrs but developed a serious side effect and had to have hysterectormy because it became pre-cancerous. With cancer its like always waiting for the shoe to drop. I am now on Femera....since October 2005....so far so good. My hair did not grow back completely as I always had long hair. It was very traumatic but life goes on...and I enjoy everyday that I am alive. Keep fighting....hair or not...you are still alive....enjoy your family and friends...keep in touch..I will say a prayer for you. Christine Natasha Mon, 13 Nov 2006 00:00:00 GMT Hi Christine, Thank you for your response. I am so glad to hear that you are doing better on Femera. I'm sorry you had to have another surgery because of Tamoxofin. I do not have a uterus so did not worry about that anyway. The drugs are scary...but are saving our lives. When I went off of Tamoxofin, I felt like I was taken off of mild chemo! But I did not have the hair thinning until now. I am at lindalhoule on comcast.net. I have a hair appt. tomorrow to get advice from my hair dresser and get it cut. Hooray for grandchildren!! They do not care if I have thinning hair. Ha. Thanks so much, Linda Lou Linda Lou Tue, 14 Nov 2006 00:00:00 GMT