No Surrender Breast Cancer Foundation by Survivor ~ for Survivor Message Forum - ~Club Mets~

No Surrender Breast Cancer Foundation by Survivor ~ for Survivor Message Forum - ~Club Mets~ http://www.nosurrenderbreastcancersurvivorforum.org No Surrender Breast Cancer Foundation by Survivor ~ for Survivor Message Forum - ~Club Mets~ 60 Fri, 10 Sep 2010 07:55:43 GMT Lung Mets http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4878681 I was diagnosed with a single lung met in July. I originally was diagnosed with a second primary and going through scans the lung met showed up. I am devastated. And so scared. I have been on Cisplatin and Gezmar and just had a CT scan. I'm waiting for the results. The tumor in my breast can not be felt. My cancer is ER+ 90 percent. I feel like I have been given a death sentence.<br /><br>Iam in my my mid 30's.No other health issues.One onc told me NOT to look at statistics that there are many factors.Another one told me my prognosis is not good because I'm a young woman. I have been very depressed and having a hard time with all of this. I have done some research on removing the lung met.My bones and liver are clear. I need hope. Anyone? Please. Has anyone had surgery for a solitary lung met? <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4878681 Wed, 08 Sep 2010 17:43:09 GMT 2X BILLS....BILLS..... http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4872544 I received a collection call last night, it seems that the hospital that I do all my cancer stuff with sent part of my "bill" to a collection agency.  I am not set up on any sort of payment plan with them because they don't like what I can afford to pay them every month, it is not enough, so I just make a monthly payment on my bill each month and they apply it how they want....NOW I am getting turned over to collections.  Is there something wrong with this?  I have to fight stage 4 breast cancer and a collection agency.  My bill will forever be high, because I am going to be on chemo and getting scans until I am dead.....WHY doesn't anyone understand this?  I shouldn't have to deal with this.  What is my legal rights here?  Anyone have some advice for me.  I hung up on the collection gal last night because she was starting to get down right rude with me.  I am not eligible for medicare until November 2011 and then I know I won't have to deal with this anymore...but that is still over a year away so in the mean time I have to deal with rude people.  What do I do?<br><br>Cathi<br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4872544 Fri, 03 Sep 2010 16:14:15 GMT bottkota Lesley http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4864652 <P>Lesley~ How are you doing?  Haven't heard from you in a while!</P> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4864652 Sat, 28 Aug 2010 23:47:12 GMT MicheleS Checking in..... http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4816227 Gosh, it has been awhile since i have posted but just want you to know that i have been keeping up with all that has been going on here.  Can't believe it has been a month since the last time I updated.  My dad is still not doing all that well, my week with him went by too fast and before I knew it I was home resuming treatments again.  Last week he had emergency surgery because his colon ruptured....weren't sure he would even survive surgery, but he did and know we are trying to get him into rehab to build some strength.  I am trying to get them moved back up here to South Dakota, have a place rented for them and my siblings are going down there next week to pack up their stuff and move it back here so all my mom will have to do is drive my dad back here to live.  Hopefully that will be at the end of August.<BR><BR>so here is what is new with me.....after returning from AZ, like I said I resumed treatment but had to stop the avastin as I had blood and protein in my urine....because I had reached the maximum 3 week allowable on the clinical trial, I am no longer receiving the avastin...and from the sounds of it the FDA is going to nix it anyway...they again reduced my dosage of Abraxane to help with the side effects I am getting.  Treatments are still taking me down and it is taking a bit longer to rebound.  Not sure how beneficial the avastin was but will find out as we continue on the regiment.  In the process I reqested a PET scan, I just wanted to know what was going on inside of my body.  My scan was on the 20th and we received the results on the 21st.  I haven't reached NED but was a better report than the first PET I had back in October.  Only 3 left infraclavicular nodes are now involved and the left side of the sternum.  Disease has regressed significantly.  ye-haw!!!  All measuring about 7 mm.  Could anyone explain what the SUV rating is?  One nodes has a SUV of 6.9, another 2.8 and the last one is 3. <BR><BR>CA 27-29 is at 35.  It has been fluctating between 42 and 32 over the last couple of months.  so at least it in the normal range.<BR><BR>So because there is still disease present on the PET we have decided to continue with the clinical trial drugs, Abraxane and Gemzar.  sure would love to get on something a little less toxic but right now I just feel that this is my best defense at keeping the beast at bay.  Can anyone tell me how long before the drugs will stop working for me and I will have progression?  I know that each person is different and that treatments work differently for each individual but I am just wondering when the other shoe will drop on me.  I have had a good run with this combo, have been on it since November so 8 months now and things are still rocking.  Just don't know what to do...don't want to exhaust my options too soon but instead keep on keeping on until the drugs do stop working.  there is a PARP trial opening in Iowa, hasn't hit the NCI registry yet but my research nurse has been keeping tabs on it for me and will hopefully have some info for me when I go in on Wednesday for treatment.<BR><BR>Other than that life is still clicking along for me and I am trying to enjoy every last minute that I am blessed with.  My children will be returning to school in 3 weeks and I am sad to seem them go but I know that I have to concentrate on me now.  I had pulled them out at the end of the school year May 2009 to try homeschooling, then BAM.....in October we found out my cancer was back.  I still kept them at home and am grateful for that, they were truly my lifeline when things seemed so uncertain...but it was very trying and stressful on me as time went on.  So they are going back, they are happy and sad about it, but we all know that this is for the best and that I have to focus on myself so that I can be the BEST mom to them even under the circumstances of life.  <img src="/images/boards/smilies/smile.gif" border="0" align="absmiddle"><BR><BR>So there you have it.....that's what's been up with me lately!  Sorry for not checking in sooner, have wanted to but life has just been throwing so many curve balls at me lately, that is hard to stay positive sometimes.  I think the world of all of you and truly appreciate all of your guys insightful thoughts!!!!  I will be in touch again, hopefully sooner rather than later!  <img src="/images/boards/smilies/wink.gif" border="0" align="absmiddle"><BR><BR>Cathi<BR> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4816227 Mon, 26 Jul 2010 00:07:09 GMT bottkota Rexin-G http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4810842 <P>Has anyone heard about this medicine? Its available in the Phillipines, has anyone heard of it? I heard its in Phase 2/3 trials, any clue as to when it would be available here and is it a promising drug?</P> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4810842 Wed, 21 Jul 2010 18:29:31 GMT Lesley Trip to the ER http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4800017 I woke up Monday with horrible pain on my right side when I would try to take a deep breath, I dealt with it throughout the day, as it would come and go, but by the afternoon I called my onc's office and was told to head to the ER immediately as it could be a blood clot in my lung.<br><br>I spent 8 hours in the ER, got a chest x-ray, blood work, a CT Scan and they said they could not see any blood clot but could see all my mets...they said perhaps one of the mets in my lung was pressing on something or not letting me take deep breaths and thats what the pain was coming from, so I came back home to my hysterical girls who thought this was "it"...and that just killed me, to see them so upset.<br><br>And now I feel so saddened, and I feel like I am losing hope, nothing has worked so far on these damn mets, nothing! why would Ixempra and Carbo work? why isnt there something for us yet? dont these doctors and scientists know how many families are losing their mommies? dont they care? I am so terrified of leaving my five kids motherless.<br><br>I dont knw if I should try contacting CTCA, there is one 5 hours from here in Arizona, I dont know if I should call them now or wait to see my next scan...I feel the panic starting to bubble up again, and I cant stop crying...<br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4800017 Wed, 14 Jul 2010 18:59:50 GMT Lesley Is anyone in North Carolina's Crystal Coast? http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4781146 <P>DH might get transferred there, were not sure when, but there is talk of it at his work. I am worried about the care I would get there?...does anyone know of any doctors in this area?</P> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4781146 Wed, 30 Jun 2010 01:01:42 GMT Lesley Options w/low platelets- EDGE help! http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4773319 Dear Constantin-<br><br>I hope you can help.  I am a triple neg, BRCA2+ with mets to lungs and recently brain and bone.  I had WBR and rads to spine in April.<br><br>My problem has always been low platelets and delayed recovery, which delays my next treatment.  I think it began while on my first treatment for mets- a PARP trial- it was ABT888 + temzolomide, and I ended up on one of the highest doses- my platetes crashed to 17 and ANC to 0.05.  It took weeks to recover, they dose-reduced me, still delay and finally I progressed after 4 rounds, I think just because there was too much time in between treatments.<br><br>We next switched to carboplatin/avastin, which was working the best, even at reduced dose of AUC4, but eventually we were having to wait 6 weeks for recovery.  I have since been on Ixempra, Navelbine to try to give my marrow a break.  Now we are trying Cisplatin, but again my platelet today were only 56, after only 1/2 the traditional dose 3 weeks ago.  It seems as if all of chemos that potentially may work are hard on platelets.<br><br>It also seems like the same with many of the EDGE-CAM suppliments, like parthenolide, curcumin, EGCG, resveratol.  I understand that they don't lower platelet counts per se, but make them less effective, and thus I am reluctant.<br><br>I feel like I am running out of options- we talked about metronomic cytoxan/methotrexate next, but it doesn't seem very aggressive.<br><br>Thanks,<br>Cindy<br><br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4773319 Wed, 23 Jun 2010 22:13:48 GMT Fishdoc TNBC please read http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4771562 <span id="post_message_40760206">Hi everyone,<br>we were approached by a medical company that wants to speak to women with TNBC mets.<br>We have checked them out and it is a legitimate company - I even had Constantine check them as well.<br>They will COMPENSATE you for responding to their questions.<br><br>Here is the info:<br><br>We are currently looking for individuals with Metastatic Triple Negative Breast Cancer (TNBC) to participate in a 2 hour study for $155. The study involves in-person discussions between you and a representative of the breast cancer support community regarding a new treatment option for Metastatic TNBC. It is important to us that people living with Metastatic TNBC have their voices heard in developing new treatment options. The discussions will take place at the location of your choice. If you are interested and would like to participate, please email <a target="_blank" href="mailto:surveys@healthacuity.com"><a href="mailto:surveys@healthacuity.com">surveys@healthacuity.com</a></a> or call 1-866-319-5851. There are a few questions to see if you qualify that will take less than 5 minutes to complete.<br>For complete details on our company and this project please visit <a href="http://www.healthacuity.com/10RAK" target="_blank"><a href="http://www.healthacuity.com/10RAK" target="_blank">http://www.healthacuity.com/10RAK</a></a><br> </span> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4771562 Tue, 22 Jun 2010 16:33:22 GMT nosurrender BC HER+ est&pro- mets to both lungs, liver now brain. Yea http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4769858 Hello Club Mets Women. <br><br>I was diagnosed with BC in April 07, by the end of may 07, I was told that both my lungs had mutiple leisons and that instead of surgery, I would go directly on to chemo.  The treatments I have been on since than are: FEC, Taxotere, herceptin (by itself).  After each round scans were done.  The FEC & Taxotere worked really well, unfortunately, herceptin by itself did nothing, indeed there was progression.  I immediately, when back on FEC then Taxotere, no effect this time.  I  tried Xeloda, then Vineobine, both ineffective.  I applied for the the clinicial trail -Tykerb and Xeloda. the first rounds were very effective.  Unfortunately at christmas I was told that the drugs were no longer working, the CT scan revealed liver mets and I was taken off the study.  At the beginning of 2010 and in constulation with the oncologist, we decided that I should be off all chemos for 8 weeks, because he found that jumping into another one right away can make the cancer  more active.  <br><br>Another scan, showed more progression on the lungs, and liver.  I decided to try the Texotere and Herceptin combo, at the beginning of March /10 which seemed to start working right away.   My cough was greatly reduce, my lungs and liver seemed to feel better, the tumor markers were coming down,  and blood work was good.  Thought I was on a roll.  <br><br>But - always the but, by the second week of May, I was starting to experience a series of daily mini-strokes on my right side.  the symptons were so fast, I didn't put down to much until my right arm got heavy.  The oncol nurse suggested I go to emerg.  They did a CT of head and found swelling.  From there I did a head MRI, and 12 rounds of full head radiation.   I can't believe how tired I am.  <br><br>now I have to see the oncologist to try to get back on some type of chemo, as I have been off chemo for a month and a half.  I feel that the damm cancer has been having a party in my body.     Any advice would be great.  <br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4769858 Mon, 21 Jun 2010 14:43:22 GMT bluejay new oncologist, new plan http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4765859 Hi all. Today I had my appointment with the new oncologist, Dr. Subramanian, at the San Diego Cancer Center.  I really liked her. She seems very knowledgable...she did not recommend I get on that HSP trial that my other oncologist wanted to get me on. She felt I should have been on the PARP-i longer..., we talked quite a bit...but, I am going with her...she wants to start me on some chemo ASAP, she wants to put me on Ixempra and Carbo every 3 weeks I think, Avastin every other week, she wants to do a brain scan immediately since its been 6 months since my last one...<br><br>I guess I should give my other onc a courtesy call to let her know I am going with someone else...hope its not awkward.<br><br>Thats my news for today!<br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4765859 Fri, 18 Jun 2010 02:23:41 GMT Lesley Liver Mets? Consider Surgery http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4763035 <b>Liver Resection for Multimodal Treatment of Breast Cancer Metastases: Identification of Prognostic Factors</b><br><br>Ann Surg Oncol. 2010 Jun 1;171546-1554, K Hoffmann, C Franz, U Hinz, P Schirmacher, C Herfarth, M Eichbaum, MW Bchler, P Schemmer<br><br>In this retrospective analysis of patients with hepatic metastases from breast cancer who underwent exploratory laparotomy, the 5-year overall survival rate after liver resection was 48%.<br><br><i>Supplementary editorial provided by OncologySTAT</i><br>TAKE-HOME MESSAGE<br>In this retrospective analysis of patients with hepatic metastases from breast cancer who underwent exploratory laparotomy, the 5-year overall survival rate after liver resection was 48%.<br>STUDY IN CONTEXT<br>The role of liver resection (LR) is controversial as a component of multimodal therapy for hepatic metastases (HM) associated with breast cancer. Thus, a better understanding of the benefits and clinical outcomes of the surgical approach is needed, along with identification of the potential prognostic factors for long-term survival.<br>To this end, Hoffmann et al. retrospectively evaluated data that were prospectively collected for 41 patients with hepatic breast cancer metastases. All of these patients underwent exploratory laparotomy for LR. Of the 41 patients, 40 patients had primary tumor adenocarcinoma, and 1 patient had a mucinous carcinoma of the breast. Patients selected for hepatic resection were stable, having no more than five metastases and with extrahepatic metastases under remission. No vascular invasion was evident, and R0 resection was deemed possible. Karnofsky index was 80%.<br>The median time from treatment of the primary breast tumor to diagnosis of HM was 3.4 years (interquartile range , 1.28.0 years). Segment resections were performed in 19 patients (45%) and major hepatectomy was performed in 22 patients (right hemihepatectomy, 25%; left hemihepatectomy, 12%; extended right hemihepatectomy, 7%; extended left hemihepatectomy, 9%).<br>The primary outcome measure was overall survival from the date of LR. Secondary outcome parameters were disease-free survival, progression-free survival, and recurrence-free survival from the date of LR and overall survival from the date of primary breast tumor operation.<br>Median follow-up was 34 months after LR (IQR, 868 months). The estimated median survival was 58 months. The 3- and 5-year survival rates after LR were 68% and 48%, respectively, although they were 80% and 59%, respectively, from the time of diagnosis of HM, with an estimated median survival of 79 months. The 5-, 10-, and 15-year survival rates after treatment of the primary tumor were 84%, 76%, and 50%, respectively, with a median survival of 211 months. Incidence of HM earlier than 12 months after treatment of the primary tumor (5-year overall survival, 28%) was associated with a three-times-higher likelihood of mortality (hazard ratio, 3.8) compared with HM occurring later than 1 year after treatment of the primary tumor (5-year overall survival, 58%). R0 resection resulted in 3- and 5-year survival rates of 80% and 62%, respectively, while patients after R1/R2 resection had a median survival of 28 months after LR, with patients six times more likely to die compared with patients after R0 resection (hazard ratio, 6.3).<br>In the absence of extrahepatic metastases at the time of LR, the 3- and 5-year overall survival rates were 75% and 59%, respectively, compared with rates of 51% and 31%, respectively (P = 0.15), for patients who did have extrahepatic metastases.<br>Following R0/R1 resection, patients without extrahepatic disease at the time of LR (n = 26) had an estimated median disease-free survival of 34 months; the 3- and 5-year disease-free survival rates were 46% and 31%, respectively, with HM reducing the respective rates to 26% and 13%.<br>The median time to intrahepatic recurrence in patients without extrahepatic disease at the time of LR was 8.6 months; the 3- and 5-year intrahepatic recurrence-free survival rates were 71% and 62%, respectively.<br>The results of this study showed that, in patients with hepatic breast cancer metastases (without any type of peritoneal carcinomatosis and/or positive hilar lymph nodes), LR was safe and improved long-term survival. No perioperative deaths occurred during this study.<br><br><br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4763035 Wed, 16 Jun 2010 02:30:21 GMT nosurrender LEPTOMETS ARE BACK w/ almost total facial paralysis--EDGE ADVICE http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4755261 Dear No Surrender Sisters and Edge,<br><br><H3 class=update_title>IT'S BACK</H3><DIV class=update_body><P>I met with my nurse practitioner today, who told me that the CSF that we drew last week DID have cancerous cells in it. This would explain my complete facial paralysis (I look like I'm wearing a mask)  and why my headache never fully went away.</P><P>Anyway, I'm glad I packed a bag because we are starting Depocyt right away intrathecally again. Depocyt is like the Methotrexate, but milder on the body (not on the cancer). I need it only once every two weeks instead of weekly (or biweekly). Not sure of the side effects, so I'll be staying over tonite just in case I can't drive.</P>So, back to the fight. I knew there was something somewhere and am glad we found this. On the 21st I'll have a PET/CT scan to see how I'm doing from the neck to the knees. (Let's pray that that's clean.)<br><br>Later....<br><P>Well, so far, so good. I met with the neurologist and he told me that what I have is not 'numb chin sydrome' (Denise, whew!), but instead bilateral Bells Paulsy caused by inflammation of the two cranial nerves. He showed me my latest brain MRI and we could see the nerves and he showed me how they were inflamed, but nothing else seemed to be. He saw very little evidence of the leptomeningeal cancer, but that makes sense since what was found in the fluid showed rare amounts of cells.</P><P>Anyway, then Deb (the Nurse Practioner) withdrew some CSF from my Ommaya Reservoir and replaced it with the same amount of a drug called Depocyt. When I had been treated with Methotrexate the last time we treated the "leptomets" within 15 minutes, I was dizzy, headachy and would barf before we got to the hotel. (That's why I always carry an emesis bag in my glove compartment.) This time, Deb proceeded very slowly and everything was fine. We waited about a half hour and then Stella, my nurse walked me to the 'hotel' desk to get my key.</P><P>Well, so far, so good. I met with the neurologist and he told me that what I have is not 'numb chin sydrome' (Denise, whew!), but instead bilateral Bells Paulsy caused by inflammation of the two cranial nerves. He showed me my latest brain MRI and we could see the nerves and he showed me how they were inflamed, but nothing else seemed to be. He saw very little evidence of the leptomeningeal cancer, but that makes sense since what was found in the fluid showed rare amounts of cells.</P><P>Anyway, then Deb (the Nurse Practioner) withdrew some CSF from my Ommaya Reservoir and replaced it with the same amount of a drug called Depocyt. When I had been treated with Methotrexate the last time we treated the "leptomets" within 15 minutes, I was dizzy, headachy and would barf before we got to the hotel. (That's why I always carry an emesis bag in my glove compartment.) This time, Deb proceeded very slowly and everything was fine. We waited about a half hour and then Stella, my nurse walked me to the 'hotel' desk to get my key.</P><P>Well, so far, so good. I met with the neurologist and he told me that what I have is not 'numb chin sydrome' but instead bilateral Bells Paulsy caused by inflammation of the two cranial nerves. He showed me my latest brain MRI and we could see the nerves and he showed me how they were inflamed, but nothing else seemed to be. He saw very little evidence of the leptomeningeal cancer, but that makes sense since what was found in the fluid showed rare amounts of cells.</P>Anyway, then the Nurse Practioner withdrew some CSF from my Ommaya Reservoir and replaced it with the same amount of a drug called Depocyt. When I had been treated with Methotrexate the last time we treated the "leptomets" within 15 minutes, I was dizzy, headachy and would barf before we got to the hotel. (That's why I always carry an emesis bag in my glove compartment.) This time, she proceeded very slowly and everything was fine. We waited about a half hour and then my nurse walked me to the 'hotel' desk to get my key.<br><br>I'll sleep here tonite and head home tomorrow.  <br><br>Edge, up til now I was taking Temodar orally 5 days on and 23 days off.  I was restart the next cycle, but obviously it didn't work on the leptomets.   I was taking Boswellia when I wasn't on the chemo (the naturopaths here took me off Boswellia and Cucumin while I was on chemo - stop 2 days before and restart 3 days after).  Also taking Green Tea extract, CoEnzyme Q10, Vitamin D3 2000 IU, Melatonin.  Meds I'm taking are Prozac 40 mg., Januvia 100, Lyrica 100 3x daily, Potassium supplement, Crestor 10mg, and while I'm taking the Depocyt,  8mg of Decadron a day, reduced to 4 a day after a week, and then 2 a day, until I get the next Depocyt treatment.    (So much for my figure.)<br><br>What else can I do?<br><br>Love,<br>Caryn ("Mumbles")<br><br>What else can I do/take to positively impact this and reduce swelling of my cranio-facial nerves in order to get back my face?<br></DIV> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4755261 Thur, 10 Jun 2010 02:59:01 GMT CarynRose Thoughts/opinions please-Edge what do you think? http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4748994 Well I have finished another round of chemo.  I have another CT scan in 2 weeks.  June 17th to be exact, will receive the results on the 18th.  Depending on the scan results, we are leaning towards taking another small break (3 week cycle break), and doing a PET scan and seeing what that shows.  Really hoping that NED shows up, would love to get off these harsh chemos.  I told my kids yesterday I would stay on chemo for the rest of my life and deal with the side effects if I could only keep my hair.  So tired of having no hair and the stares that I recieve when I go to ball games with my kids or to the store.  Really, have people never seen a cancer patient before.  <br><br>What are your guys thoughts?  Do you think I should request a break?  Do the PET scan and see if it shows NED?  What if the CT scan shows NED, then should be just stop chemo all together?  Why posion the body is there is no cancer there?  My CA 27-29 is down to 32 now.  It was 94 in October, 40 in March and 32 in May.  They are retesting the markers again when I go in for my CT scan, hoping they are lower even still.<br><br>What about doing just Avastin as a maintanence protocol?  The doctor I saw in Rochester had suggested it as well.  When do you reach maximum benefit?  I would hate to see these really good drugs start to make my cancer resistant and then it would be time to start new ones and that I really don't want either.<br><br>I saw my breast surgeon on Thursday, 6 month check up to look at port placement and talk about what's been going on.  I mention the parp's to her and she told me that she had heard that a clincial trial had opened up for the parps in Sioux City Iowa.  So when I saw my research nurse yesterday I mentioned it to her and she is going to check into it for me.  I am just trying to keep all my ducks lined up and have an aresenal of things to use when the time is right.<br><br>So ladies, I love you all dearly and really appreciate your thoughts, opinions etc.  <br><br>Edge-what are your thoughts doing Avastin as a maintence protocol?  I am currently only taking 2 supplements on the Edge-Cam right now, curcumin and boswellia.  Want to add more but since I am on Abraxane, i have not added more, like reversatol.  Any thoughts or opinions from you would also be greatly appreciated!!!<br><br>Have a wonderful weekend everyone!  I will keep you posted.<br><br>Cathi<br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4748994 Sat, 05 Jun 2010 14:58:03 GMT bottkota Change of Plans http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4736999 I guess my rad oncologist took my case to the tumor board. They suggest that she keep scanning me monthly to check my spine, and in the meantime to start me on chemo next week. Since I dont really have any symptoms, they are hoping that maybe some chemo could do something to the stuff on my spine while taking care of my other spots (if only, if only)<br><br>I might get a PET scan tomorrow, and could start on chemo as soon as next Tuesday or Wednesday...<br><br>I dont even know if this is good news or bad news or what...I would just like something to work on me, I would like a good scan for once. I just want a break.<IMG border=0 align=absMiddle src="http://www.nosurrenderbreastcancersurvivorforum.org/images/boards/smilies/bawl.gif"><br> <p>Forum: <a href="http://www.nosurrenderbreastcancersurvivorforum.org/?forum=96657">~Club Mets~</a> http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4736999 Fri, 28 May 2010 03:58:48 GMT Lesley