DCIS Rad w/Herceptin Clinical Trial?
Comments
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Has anyone with DCIS participated or considered participating in this study?
Radiation Therapy With or Without Trastuzumab (Herceptin) in Treating Women With Ductal Carcinoma In Situ Who Have Undergone LumpectomyI was invited to participate in this study and am evaluating the risks and potential benefits. The study is randomized, so even if I decide to participate, I may not be given the two doses of Herceptin during radiation. Any thoughts? Things to consider? Thanks!
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Be careful of the side effects especially heart related. My MO was pushing this also but I said no. He said it was probably good because of the cardiac problems. Sorry I did not ask what those problems were. Good luck.
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Thanks Cindy and BB
I am inclined to participate in the study for the greater good. It isn't really clear if there will be benefit for me, but with a high grade, er-/pr-, I am hopeful that it would be a deterrant. I gave them the approval to send my tissue off to be tested, but still deciding abou tthe study. I am a single mom, so particularly concerned about long term side effects. I've heard many people tolerate it well. My mom and grand father had heart issues, but so far mine is healthy. The other things I'm doing to help reduce the rr are diet and radiation. My PCP strongly encouraged me to move to organic, near vegan diet... wild caught seafood and organic chicken/turkey ok, but no dairy and lots of brightly colored fruits and veggies. I've made (still making) those changes and hope to get a reduction in recurrance liklihood from that. My job tends to be pretty high stress, so I am working on how to manage it to be productive stress only, giggle. I meet the RO on Monday and think I have to make a decision the end of next week or the begining of the following as I won't delay starting treatment for the study. Any questions I should ask beyond heart health? The study has been going on for a while so Id think they'd know if anyone had a life threatening issue. Rx side effect documents scare the %%^&* out of me! -
Cindy, thanks for sharing! I am definately leaning toward participating. I see the RO on Monday and will know more then. I am also waiting for the HER2 testing. I'll let you know. "I'm waiting for..." seems to be the theme of ca treatment, giggle!
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Hi Sharon..
as you make your decision, do remember that DCIS is not actually breast cancer... it may or may not ever develop into an invasive disease.. so it is critical to change your body's chemistry.. naturally .
Having an inexpensive saliva-based estrogen metabolism test can tell you if your body is
efficiently getting rid of your "bad estrogen" or not. If not.. it means your body is continuing to absorb excess estrogen that you, in fact, should be eliminating. Changing your daily diet from one that is too acid (think milk, meat and sugar) to one that is more alkaline (think plants and fruit, including small amounts of fermented soy each day.. miso etc & whole grains) can help your body begin to get rid of the high amounts of "bad estrogen" that may have created your estrogen negative and/ or estrogen postive DCIS cells or calcification. There are many other ways to help your body change its current pro-DCIS-forming chemistry... including getting rid of all excess body fat.. esp if you are past menopause. & getting your blood levels up to 60 ng/ml - 80 ng/ml of vitamin D3 . see www.knowbreastcancer.net
Best of luck with your decision and with your choices of healthy breast- cancer -stopping lifestyles.
Best, Susan
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DCIS is breast cancer. It is non-invasive or pre-invasive, but it is breast cancer. We do not need anyone coming to the DCIS board to post her opinions about DCIS as fact, especially someone making a first post and providing no information to indicate what diagnosis, if any, she has.
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Hi everyone thanks so much for your posts! I saw the RO today and REALLY LOVED her. She was informative, personable, thorough and up on all the research in her area! I see her again tomorrow to answer the rest of my questions and do the simulation. I think I'll have a little while before I have to make my decision on the trial. The test results take a little time and they need a week and a half to two weeks after the simulation before I would start at the earliest.
I learned something interesting about recurrence - just because the DCIS they removed was e-, p-, does not mean that a recurrence, DCIS or IDC would also be e-, p-. the receptor state can change with recurrence.
It was so interesting to hear the history of how DCIS treatment. It was not that long ago that mastectomy was the standard of care. Women who were willing to try the breast conserving therapy in clinical trials pioneered today's standard of care. followed by women willing to trial breast conserving surgery with radiation, and again breast conserving surgery with radiation and Tomoxifen.
I have heard that there are nutritional studies underway at Harvard and Southern Cal. But so far the studies have not been conclusive. I'll check the nutrition board later this week. My PCP told me to shift to an organic, near vegan (no low fat milk products - blue milk ok) with wild caught seafood and lots of cruciferous vegetables and NO alcohol - ok 4 oz at a wedding or other special occasion. A diet which has been proven good for heart and colon health. So I am in!
The RO also sited the recent study on alcohol, women who don't drink at all have better stats. I was getting saturated at this point in the appointment- anyone else max out with these amazing doctors?
So for me, it will be a combo of surgery, radiation and dietary bump. I'm still leaning toward participating in the H trial, but not decided.
btw... I soooo wanted to go to Paris instead of the appointment with the RO. Funny from a gal who's always been soooo responsible. I was joking with my "fun" girlfriend who was being the responsible one today. A guy on the patio at Peet's over heard and said he'd go, tempting, but alas, I went. Paris would have been so much more fun, giggle... loooking for the silver lining!
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Hello Sharon & Everyone. I also have DCIS and have had a lumpectomy and will start radiation soon. I was asked to be in the clinical trial for Herceptin and had the tumor tested and it was positive for Her-2 protein. I have been tossing and turning trying to decide whether to participate as I am scared of the side effects. My tumor also tested 85% positive for estrogen and the tumor was grade 3 with comedo type cells. I was diagnosed 5/31/2011 with the surgery 7/6/2011 and radiation starting 8/1 or a week later if I decide to do the clinical trail. Any thoughts?
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Thank you Redsox! Notice she hasn't been back. Ugh, my biggest pet peeve is people coming over here and telling us we don't/didn't have cancer.
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I am so happy I found this thread! I was just going to post a similar topic. I was just asked last week to participate in this clinical trial and like you I was skeptical about the risks. The dose given is very small compared to the regular dose of Herceptin given to women with invasive BC, so I decided to go for it. As in everything with medicine, there is always a negative side, but most of the time the benefit outweighs the risk. Also, it is a randomized trial, so only half of the ladies in the study will recieve the meds, but all will be followed. Currently wainting for my HER results and praying that I am positive, don't want to be triple negative! The information I was given stated that early test results have indicated that Herceptin may enhance the effect of rads. I will take all the help I can, especially since tamox is not an option.
Sharon and Mconsiglio, please let me know if you decided to do the study.
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Hi Gals, I decided to participate in the trial. My tissue is off for HER2 testing and I should know on Friday or Monday if it is positive. If yes, I'll sign the trial paperwork on Monday and be randomized on Tuesday. Rads start Monday. I also was worried about the side effects, but after I stepped away from the 'drug side effect sheet' and listened to the usual experience, I was more comfortable. I was almost convinced prior to my appointment with my RO. During the consult, she walked through the history of treatment for DCIS which is part of how she explains RT as part of standard of care. What really hit me was that the large randomized studies done in the 90's changed DCIS standard of care for all of us. Thousands of women participated in a studies that randomized mastectomy, lumpectomy and nothing. (I am drawing a blank on the study numbers, but could find them if anyone needs them for more info) It hit me so hard that those brave women participated in the studies that show lumpectomy with RT is as effective as total mastectomy. I had a lumpectomy instead of mastectomy because they participated in the studies back then. It sort of put the two doses of Herceptin into a new perspective. So, stay tuned, I'll post again after I get the HER2 results. Lauren, my DCIS was also er-/pr- and I thought tripple neg was concerning too. My RO said that er and pr state can also change. So if I was unfortunate enough to have a recurrance the er, pr and HER2 status could all change. Doesn't it sound like a dice game? Ha, ha... trying to keep humor!
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I agree with everything you said Sharon. If participating in this trial can help further research for BC I am all for it! I did not know that ER/PR and HER status can change, that is good information and I'm glad you mentioned it. I am hoping to know my HER status by Monday also; fingers crossed for both of us!
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I am doing the study and I was randomized on Monday and will receive the herceptin tomorrow after my first radiation. Keep you fingers crossed that all goes well. Right after radiation I go to the chemo clinic where they give the herceptin over a 90 minute period. The herceptin is considered a targeted therapy as it goes after the HER-2 protein and does not harm other cells. I am kinda scared about the side effects but I also feel that if this is another thing that can help me from getting a re-occurrence and help others down the road it is worth it. Hope all goes well with you and Sharon. Keep me posted.
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I applaud those of you participating in this trial. They don't know much about the significance of HER2 + status for DCIS, but this is how they will find out.
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Hi Ladies, my HER2 results are in - negative. So I wont be able to participate in the trial. mconsiglio keep us posted on how it goes and Mamamia, let us know if your cells were pos or neg. see ya on the Aug Rads board - I'm going to see a genetic counselor because of family history we didn't discuss before the lumpectomy. Not sure if it will delay rad start.
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Well, I just got the call from the hospital and I am HER2+, so I will be able to participate in the study. By the time I got home today, the nurse in the clinical research department was gone for the day so I don't know about the randomization or anything, hopefully tomorrow. Sharon, I am sorry you won't be able to participate in the study, but thank you for all the great information you gave. I had the BRCA testing as well and the results came in pretty quickly, I hope it doesn't delay your rads. I will definately see you on the August Rads thread.
Mconsiglio, I hope everything went well today with your first treatment. I'll let you know if I will be receiving Herceptin the trial and we can compare notes.
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Hi Lauren
That's great that you are willing to be included in a clinical trial to hopefully benefit others in the future~
I hope that you get the info you need tomorrow~
Regards
Carolyn
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Hi ladies, Lauren, woo hoo, you wanted the results to be positive and they were! Hopefully you will be randomized to receive the Herceptin. Look forward to hearing. mconsiglio, you're in also right? So is that two on this board who are in the study? Anyone else? Best of luck with it, sending healing prayers and thoughts your way.
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thank you ladies for participating in the trials , for all those that have to follow us in this journey may it lead to more options
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Well, its been a busy couple of days. Yesterday I signed the consent to participate in the trial and I also had a consult with a medical onloclgist because that's who would administer the Herceptin (didn't know that). I really liked her and she explained the treatment and side effects very well. She also had an interesting bit of information, I am not ER-/PR-, but ER-/PR+. This was news to me because my biopsy indicated negative; the tissue from my initial lumpectomy was tested and this is when the PR+ was discovered; I guess the biposy tissue is small and may not be able to accurately determine ER/PR status. Not sure why my BS never mentioned this, possibly because I had a big issue with close margins (since my 1st re-excision was 1 week after the LX I never got that pathology report, just the more recent one). I am really bothered by this and I think I am going to call her instead of stewing about it, I think it was kind of important information for me. Well, anyway the MO told me that I may want to consider anti-hormonal therapy to start after rads! She said some doctors do not feel it is beneficial for those only PR+, but she does. Something to think about.
Regarding the trial, I just found out today that I am in the group that will not receive Herceptin, but still be followed for 10 years. I am not disappointed, I guess this is what was supposed to happen. I am very thankful that I learned my HER2 status and about my PR+ status; had I not signed up for the study, I would never have gone to the MO and may not have known. RO will be calling to set up a time for me to start rads next week, so I 'll be glad to get that going.
Mconsiglio, how was the first infusion?
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Hi Lauren
Amazing how things work in this crazy world of bc! You're very lucky you had a medical oncologist that was on the ball and shared the new information with you.
Keep in touch and let us know how you're doing!
Carolyn
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Hi Ladies, sorry it has taken me so long to get back to you all. The infusion was scary but I tolerated the Herceptin well. It took a long time, we got there around 11:45 and did not leave until after 3:00 but did not have any really bad side effects. Felt kinda punky, but that could have been since we had breakfast around 9:00 and did not eat anything else until after 3:00. I did have some chills but it was not bad and like I told my husband, I hope that Herceptin is in there kicking some butt. Today is Saturday and I really felt back to normal by Friday. Lauren, sorry you did not get into the Herceptin group. My last infusion is on 8/24 and it is only for a half hour so that should be a piece of cake. When I was getting the infusion the hospital brought around a Therapy Dog and it was really neat to see all of these sick people getting Chemo just brighten up when the dog came around to see them. His name was George and he was a standard poodle. They will watch me now for 10 years like Lauren and I just hope something good comes out of all of this for everyone. Someday, they will be able to cure cancer and I hope that day is soon. I see the MO on the 23rd before the last infusion and after radiation it is Tamoxifen. Good luck Ladies I will keep you posted and you keep me posted on whats happening with all of you. My first name is Marlene, I should have put that in the profile but I can be kinda computer illiterate sometimes.
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Marlene, I'm glad to hear things went well and that you tolerated the infusion. I did hear the first one would take a long time, but wow, 3 hours! I hope it is in there kicking butt too! The next one should be a piece of cake.
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I'm not DCIS, but this is a great thread. My treatment choices depended on clinical trials like tailor x, so I am so glad you are participating in this.
I remember reading somewhere that DCIS is more likely to be Her2+. It has been an amazing drug and I hope it protects you for the future.
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Thanks Lauren, As you said the next infusion should be much easier, only a half hour. If they find that Herceptin helps DCIS we all could benefit and that would be the best news ever for everyone. Keep in touch and good luck with your radiation. As one women said, once they dial you in with the machine, it takes longer to get dressed and undressed than the treatment.
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I will definitely keep in touch Marlene. Hoping to hear from RO tomorrow about starting rads this week. How are your rads going? Have you been on the Aug 2011 rads thread, it's really nice and pretty informative too. Most of the ladies are in the first week or two of treatment and all are doing well, so it eases my mind a bit.
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mconsiglio I'm so glad it went well for you with only small SEs; I hope you have no issues with the second infusion. Lauren, good you found out the right status of your cancer, I wish you well deciding what to do post rads. Sending healing bleep kicking prayers to all!
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Hi Ladies, I am hoping you all are doing well and kicking the crap out of this awful disease. Lauren, my rads are doing fine. So far, knock on wood, no problems with burning or fatigue but this will be my 11th treatment today. My RO gave me some steroid cream which seems to help. Just put it on after each treatment. Next Wednesday is the last infusion of the Herceptin and then it is just follow up for 10 years and see if there is a difference. Lauren I have not been on the Aug 2011 rads thread, will have to do that. Good luck Sharon and Lauren, both of you keep in touch and will continue to send healing thoughts and prayers to all.
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Marlene, so glad to hear that rads are going well. How often will you be going in to be monitored for the study after rads are over? The MO I met with told me every 3 months, but when I initially was talking with the nurse in the research dept, she told me it wouldn't be any more than usual (every 6 months). I haven't really followed up on this yet, just wondering what you were told.
Sharon, I hope you are doing well. Please let us know about your new treatment plan.
Hugs and good thoughts to all!
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Hi Lauren,
I see the MO Tuesday to get all the details. They were starting the radiation so soon that when they found out I had the HER2 protein they had to start right away and I did not get to talk to the MO about it much, but I was also originally told every 6 months. I will find out and let you know. How are your Rads going? Right now the worst thing about it is going every day to the hospital which is 20 miles away. Hopefully that will continue to be the worst thing. Waiting in the room before treatment I talk with alot of women also getting radiation and most have not had any problem. Well Lauren, keep smiling and I am sending good thoughts, prayers and hugs to you and everyone.
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