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Medical Forum / Diseases and Disorders / Breast Cancer / January 2004Sometimes I get so frustrated and scared, and other times, am able to be alot more detached...
I haven't reported an update on my arm/shoulder lately but am still having difficulty. I don't believe I have had the 'right' type of evaluation yet--and hopefully will get that soon, if not immediately. I am fearful that what is going on may involve brachial plexus involvment which may or may not have to do with the cervical spine as well. I am waiting to get -- first a new MRI of the CT spine. I had one done on the lumbar and thoracic but the dr. forgot to include the CT--when the order finally came through it was too late to do all at the same time. I went to have the CT MRI done about 10 days ago--was in the machine and everything when I was pulled out and told that the machine was broken. They were supposed to get it fixed that night. They have replaced 4 different parts and it still is not working. Friday I tried to have it done at a different facility within our non-profit HMO. I couldn't reach the dr--he was out but eventually learned that they were booked until after my upcoming appt. with spine dr. I tried to get copy of order to take it privately--but area was closed. Now that is just for the CT spine. The next question is whether they are also going to do the brachial plexus area--not an uncommon area for mets and unfortunately my symptoms seem to correspond with that possibility. I thought when I had the MRI of my shoulder last October they would have done that as well. The tech who booked the MRI appt was helpful--she made sure that I would get it done during the day so that if contrast was needed there would be someone available to do it. (They also have evening appts). I assumed when the rhumatologist ordered the new MRI a couple of weeks ago--that all areas would finally be covered. I got a call last week--booking me for a shoulder MRI for Tuesday night. It didn't even specify contrast. I was quite angry. The rhumatologist called me back--guess she is new at this--thought she had specified more of the areas to be covered and didn't realize that contrast had to be specified. We shall see...Meanwhile it has been hurting for over 5 months now and the 'right' evaluations have not been done... On a good note--I had my whole family home for 2 weeks. My older 2 daughters had their respective boyfriends visit for several days each and my youngest had her college roommate along with her identical twin sister. We had a great time with friends as well. That helped distract me a little from all the above. Then, another of our youngest daughters friends died last week--a heart attack (no drugs). He had had a heart problem that he had open heart surgery for as an infant. He had a mild problem that was being monitored but, well, it caused him to collapse at a time when he was home alone. He was the only adopted child, now in college, of very involved parents...so sad...and this happened 2 months to the day after another of her friends lost her battle to Hodgkins at the age of 17. Then last year another of her classmates was killed after school--an older women, under-the-influence was speeding and rear-ended her while she was stopped at a light--causing her to hit a utility pole. She suffered major brain bleed. This happened the year after two other classmates and friends died in an horrific crash--and that happened 2 weeks after a young cousin and great uncle died--and the month after that one of our closes family friends died of a heart attack at the age of 50. My youngest was visiting our eldest that weekend--and when she came home--we had to tell her. Her response--she flippantly asked if anyone else she knew had died. Then 3 weeks later another close family friend lost her battle to ovarian cancer. All this started in her jr year. However, in her freshman year one of the girls whom she was most compared to was killed at the end of the year in another tragic car accident. 9 months after that I was dx'd with b.c. Then 9 mos. after that was the month where the 4 deaths occurred...followed by the other 2 (and then the one last year) and the 2 in the last 2 months. At the start of her sr. year in high school (she is in her freshman year of college now), she was asked if she'd like to participate in a grief counseling group (this is before the last 3 students died). She did and it helped, but still, there has been so much...This is probably a bit confusing but there have been just too many. I am sharing this here because it has been another reason behind my doing every thing possible to help me survive. I can't put this child through another death. I know I may not be able to have that control but have to at least try... Kaye I thought you saw an orthopedic physician, neurologist, rhematogist... and now you are saying that you haven't had the "right" evaluation ? It sounds like you need a good internist to help diagnosis what is going on and not spend time going from doctor to doctor not getting the "right examination".I have never heard to CT/MRI of the spine...Cat scan uses x-rays and MRI uses magnets I don't know how they can combine the two into one test. Furthermore the MRI can take up to an hour per patient therefore limits the number of patients that can be examed per dayAnd people with acute injuries are done first. Besides your shoulder are they going to re -examine your back your were having leg and back pain their too. I can understand your frustration....who is managing your pain issues? I would think that physician would be concerned dispensing narcotics without a firm diagnosis. Is your oncologist concerned regarding metastis? Wishing you the best and a clear diagnosis.Alex . << I thought you saw an orthopedic physician, neurologist, rhematogist... and now you are saying that you haven't had the "right" evaluation ? >> Yp, that's right. I was referred by my regular internist to he orthopedic surgeon. He only did an MRI of the shoulder, although I showed him that the pain extended down my arm and at times across my clavicle. The MRI did show some degenerative changes in the shoulder. The orthopedist told me he thought the problem was from my neck (cervical). I asked if he was going to tell my internist. He said "no." Mind you they work in the same facility, and I was referred by the internist to him but they will not discuss they case, apparently between them. Something is very 'wrong' with that picture. Okay, so I call my internist and tell him what the orthopedist said--so he refers me to the rhumatologist. I am impressed with her--she seems like she is in touch with the reality of what may be going on. She said she is going to do an MRI of the whole area. She sees the swelling in my upper left chest near the arm pit. That has worsened or come on in the past month. I have had pain in the lymph node area since August--and now the area is swelling up. I saw my ob-gyn last month who also felt the swelling and told me she was going to call my oncologist--who apparently is 'waiting'--for what, I'm not sure. Anyway, when I spoke with her again, she told me he said something to the effect that he was 'aware' of what is going on. I had figured it might just be shoulder and upper arm, although last August I wrote my oncologist a note and shared with him a teaching article that where symptoms similar to mine had been reported. He never gave me feedback. I did see a private internist who wrote an order for the PET. My onc. refused and we had it done--out-of-pocket. The PET was done at UCLA by a fellow student. I had left all my scans in the car at the time of the scan. I told him I could get them--he said that he had last year's PET available. I went and got them anyway and brought them up. I had to wait to see him because he and other students were meeting with the head dr's. I could see/hear what was going on. They presented their case and the others commented on it. I assume that was done with mine too. I get the feeling that the films were not that carefully reviewed by the head dr's--that the fellow student wrote up the rept based on his knowledge and they--head dr's just signed off. It was done too fast. Meanwhile I brought him the other scans--again he told me he didn't need them. Meanwhile last year's PET reported increased uptake in some areas and said an MRI should be ordered if there were symptoms. No MRI was ordered at that time. Anyway, getting back to current PET -- it did show increased uptake in areas reported--in fact it stated that there was more in my left shoulder area than right. Now--getting back to PET report. The fellow student wrongly wrote that I may have lymphedema in my left arm. He said nothing of the pain which is why we went through with the private PET. The first problem is that I don't have lymphedema in my left arm. It is in my right arm--bad enough that I wear custom sleeves 24/7 but do not have any pain from it. I called and spoke to the head radiologist who said he'd correct the clinical hx but not change the report. I found out from my daughter that it is illegal for them to change the report. They added an addenedum--which again was wrong--it stated that I had pain in my right arm (the one with lymphedema). I don't the pain is in my left shoulder and left upper arm--not my right--and sometimes extens to clavicle and neck on that side. This was back in early September. The pain started in August. Then in October I see 2nd opinion onc who gives me Zometa infusion and increases Celebrex to 800 mg/day. That helped. Internist gave me cortisone injection which didn't help--and later after MRI--which was done after cortisone injection it showed I should never have had an injection where it was given. I also finally see the physical therapist to whom I was referred--what a joke--for shoulder strengthening. That wasn't the problem. I also saw the orthopedist then who ordered the MRI. I asked if he was going to do it of the rest of the arm and areas that hurt. He said he was just doing it for the shoulder because my internist referred me for shoulder pain. It didn't matter that I had been telling each of them of the upper arm pain. Oh, and in October I began having another symptom--a small area of upper forearm will get numb and a couple of fingers will either get numb or cramp up into a claw position--like 'Charlie Horse.' In my research that implies brachial plexus. So last week I see 2nd opinion onc--through health care facility--and basically what he told me was that early dx of metastases does not improve long term survival and that they don't like to treat early because they'll use up all the treatment and that it is expensive--seriously. That's the bulk of what has been happening. I feel so frustrated at times. Then there is the pain...The night before last I bound the area (for the swelling) and slept on my stomach with an ice pack under the area of my upper left chest (by shoulder) and under my shoulder. It felt alot better yesterday. That further confirmed my suspicions that there is some type of brachial plexus involvement. I don't even know what the brachial plexus is but everything I have read about that is the only thing that corresponds with all the symptoms that I am having--including the swelling. Now, as I said before--I am getting tests--but not all of the 'right' ones. I should have had an MRI of the brachial plexus area and axillary nodes last August when I complained of the severe discomfort in that area. I would have pushed further but didn't even know that is what should have been done. I am not the one who should be telling them what kind of test to do. They are not recording the symptoms as I am telling them--and are doing tests based on what they write in the report--which does not coincide with what I've reported. I don't know if this is unique to our HMO, but it is what is happening to me at this time. Also the 2nd opinion onc through our HMO did say again that I was at very high risk for recurrence. And then there is the private 2nd opinion onc--who only does 2nd opinions. He concluded--last August--without seeing me or any films that I had developed degenerative changes in my shoulder. I certainly wouldn't argue with that but there is something else going on. MY upper arm wouldn't be aching--primarily at night--if there wasn't. Oh--and back when this started there were several days where I couldn't lift a glass of water or brush my teeth with that arm--also suggestive of involvement as I described. Something weird is going on that has yet to be identified. All I want is the correct test--the one that would correspond to the symptoms that I am experiencing at this time. << All I want is the correct test--the one that would correspond to the symptoms that I am experiencing at this time.>> And I would like appropriate treatment, too. Getting back to the PET, I was offered a free PET in 3 to 6 mos. We shall see--but that doesn't correct the fact that some important aspect may have been missed. I have copies of some of the black and white images--but that is not what the PET is all about--it is on dvd--and shows 3-d images. If something was missed, one is not going to see that from the 2 small films I was given. And even is something was missed--since the stats--although I do not agree with them--say that early treatment of mets doesn't matter, I have nothing to stand on legally. Again, the only thing that makes a difference in terms of breast cancer is early dx--before any lymph node involvement. I have learned that treatment centers are not = and that 2nd opinions are only as good as your insurance. I learned that from a gal whom I met on the b.c. walk. She was told she could have Herceptin for one year--that was all that was indicated or approved. She had an HMO for insurance. She then switched to a PPO and the same dr. told her because she was now better covered that she could receive Herceptin for the rest of her life... That makes me think back to the 2nd opinions I got--including one by the same specialist she sees (one of the Herceptin researchers) who wouldn't even discuss my case--just said all I could have of the Herceptin was for one year and was quite abrupt. I had seen another specialist during my first year who told me he didn't disagree with what I was getting but at the same time would not tell us whether he would have used that and implied that he would have done things differently.... Kaye, I work in a Major Medical Center one of the world's top hospitals and have worked in another top hospital in the world. And I have to say when the docs are putting together a treatment plan insurance is the last thing they think about. Often I see the hospital eat the cost of therapy because it is the right thing to do. Often sick patients from foreign countries put themself on planes and present themselves to the hospital. They are provided with the same care another patient with insurance has. The only difference I have seen in care is the very wealthy patients will pay for private rooms and extra nursing care. The care a HMO and PPO offers should be the same. The difference with a PPO is you can choose the hospitals and physicians without your PCP. Often the PPO has a cap on your coverage...most of the policies I see this is 1 million dollar life time cap. HMOs I have worked with do not have any lifetime caps. Your friend with teh PPO will not get unlimited herceptim she will exhaust her benefit and have no insurance in a very short time. You have to careful to base medical treatments that are based on friends experiences since often I find you never get the complete picture. Herceptin has only been approved for Stage IV cancer Indications http://www.herceptin.com/herceptin/physician/j_profile/efficacy.htm#ind Herceptin also can damage the heart - I don't think they know what the safe max dose is so often they limit how much a patient can get. "Herceptin is FDA approved for first-line use in combination with paclitaxel for the treatment of HER2 protein overexpressing metastatic breast cancer in patients who have not received chemotherapy for their metastatic disease. Herceptin as a single agent is indicated for the treatment of HER2 protein overexpressing metastatic breast cancer in patients who have received one or more chemotherapy regimens for their metastatic disease.[1]" This drug has only been approved for women with met disease....were you part of a clinical study ? I am confused on how you qualified for this? Taxol was finishing it's clinical study when I was diagnosed, my oncologist said she would have loved to prescribe this for me but couldn't since the research wasn't enrolling new participants ( for stage 2 ) and it was against the law to prescribe this drug for Stage 2 breast cancer...if I had advanced cancer I would have been able to qualify. Now everybody can have this option. Herceptin also can damage the heart - I don't think they know what the safe max dose is so often they limit how much a patient can get. My experiences with patients will newly diagnosed mets is that the doctors not have to do repeated scans, xrays, pet scans, etc....the symptoms present themselves in a very acute way that alter the way one can function in a short period of time. Occaisonally a person with early bone mets will have pain but in would be thought it was non cancer related - had an xray or scan that was inconclusive....the pain ( acute pain - where people can't function in a normal fashion, no walks, not being able to go to work etc) goes back to the doc and they are rescanned and the met disease is evident and treated. But usually the treatment is for the pain by giving pallative radiation treatment. I have never seen a case where people had non acute pain and then progress to met disease. I have seen patients who had a scan for reasons other than pain ....for staging reasons or high tumor markers and be positive for bone mets. I think how unfortunate for these patients since they don't offer any treatment for these patients other than will keep an eye on that and offer treatment when you become systomatic. Lastly you keep mentioning on being high risk...this is so confusing since women who have very early breast cancer get met disease and die, and people who are high risk live long and never have any recurrence. The science of predicting who will do well and who won't is not accurate and only slightly better than a crystal ball or tarot cards. Time has been on your side, there are women who don't even finish there intial therapy without having the tumor reappear. You are close to 2 years out ( if I remember correctly).....that is great... ALex Alex wrote: << Your friend with teh PPO will not get unlimited herceptim she will exhaust her benefit and have no insurance in a very short time. >> That's not what I understand. It is what her oncologist recommended. There are some who have been on it since it first came out. Here is an example of someone still receiving Herceptin similar to the gal I met. http://www.dream-tool.com/tools/messageview.mv?view+profilesincourage+3+index This person has stage IV breast cancer. which is a clear indication for it's use. > Alex wrote: << Your friend with teh PPO will not get unlimited herceptim she > will exhaust [quoted text clipped - 3 lines] > are some who have been on it since it first came out. Here is an example of > someone still receiving Herceptin similar to the gal I met. http://www.dream-tool.com/tools/messageview.mv?view+profilesincourage+3+inde x Alex wrote: << This person has stage IV breast cancer. which is a clear indication for it's use. The gal I met who was told that she can now stay on it the rest of her life was stage III (b?) but also was relatively young--early 30's, and I don't know who her insurance provider is... >Alex wrote: << Your friend with teh PPO will not get unlimited herceptim she >will exhaust [quoted text clipped - 4 lines] >someone still receiving Herceptin similar to the gal I met. >http://www.dream-tool.com/tools/messageview.mv?view+profilesincourage+3+index Interesting - we got cut off after a year as well. I'm not sure I see a benefit to continued Herceptin - seems to me that it would have killed anything it was going to by now and anything left would be Herceptin-resistant. Unlike HMOs, PPO providers often have a lifetime benefit limit - with my old insurance company that limit was $1M - and one would think that was a lot of money but we all know it ain't ;-) Our current PPO provider has a $6M lifetime benefit - which makes me a lot more comfortable.  Signatureallan spammers can reach me at abuse@localhost humans can reach me at wizard at pointbeing dot com Allan wrote: << Interesting - we got cut off after a year as well. I'm not sure I see a benefit to continued Herceptin - seems to me that it would have killed anything it was going to by now and anything left would be Herceptin-resistant. Dunno, that's not always the case but am not sure. Remember my colleague with lymphoma? He had recurrence while on Rituxin and underwent a stem cell transplant 25 mos. ago. The cancer returned after that and in April of 2002 we was given a prognosis of 2 weeks to 2 mos. He has not been given any further chemo but was allowed to stay on the Rituxin even though the chemo had returned while on it. His wife started alternative treatments in addition to the Rituxin--some of those include flax seed oil, omega 3, and I am not sure what else. All I can tell you is that he is back to work 80%, feeling stronger although still not back to where he was, and it has been 22 mos. since he was given that prognosis. I know of others in stage IV breast cancer who have been allowed to remain on Herceptin. Whether or not it helped slow things down--who knows? I Have HMO/POS the HMO is unlimited coverage and my POS is capped at one million....6 million is good. Alex > >Alex wrote: << Your friend with teh PPO will not get unlimited herceptim she > >will exhaust [quoted text clipped - 23 lines] > spammers can reach me at abuse@localhost > humans can reach me at wizard at pointbeing dot com Alex wrote: << The care a HMO and PPO offers should be the same. >> It should be, but it's not. There are some wonderful physicians at our HMO. Then there are some who aren't so great. That's the same for private dr's, too. However, it's the system that interferes with the optimal effectiveness of what is done. My friend's grandmother was not allowed a certain treatment--given a prognosis of a short time. She switched health plans and was given the surgery denied by this HMO. She lived 10 more years. It is a known fact--in our state--that there are limitations invoked in what is given through this HMO but that might be true of all insurance plans--in certain areas. A private oncologist recommended that I have a once yearly infusion of Zometa to prevent osteoporosis. I asked my HMO and he said it was not indicated. When I went to get a 2nd opinion through same HMO with an oncologist recommended by the HMO gynocological oncologist who did my hysterectom (who has the reputation of being one of the best, if not 'the best' in the city), I mentioned that the once-yearly Zometa infusion had been recommended--he asked what I was doing after the appt. and offered to give it to me. As far as Herceptin--it was offerred because my breast cancer was 'different' Now, I should preface this by stating that he later changed my stage from stage II to stage III after we asked the following--if he thought I had inflammatory breast cancer, doesn't that mean that I am at a more advanced stage? Personally, I think he believes that I was closer to stage IV if not stage IV. There is the question of whether the retroperitoneal nodes and aortocaval node reported in first CT scan were malignant. They were never biopsied. And then there is the liver lesion--what was going on was never conclusively determined. I am not sure if you recall--but Tony Lima reported that his wife also was dx'd with invasive lobular. I think she had 3 (or was it 4 or 5?) positive nodes. Her initial scans were clear. She then had a body MRI which showed liver lesions. She is also being treated through same non-profit HMO in another area of the state. I had 9 positive nodes, extensive lymphovascular invasion and 3 different types of aggressive breast cancer--pleomorphic invasive lobular (rare, aggressive variant with relatively short relapse-free survival time), high grade dcis with comedo necrosis, and a separate tumor in nipple with dermal lymphatics (rarer presentation of inflammatory breast cancer). I was allowed the Herceptin because of all that I had going on. I was offered the clinical trial for Herceptin but was rejected from it because of the M.S. I am not sure but that might have been another factor that went into their approval of it for my case. I haven't heard of limiting Herceptin if all is going okay. Have you read the book, THE MAKING OF HERCEPTIN? There are still some on it who have been on it since initial clinical trials. A Highly Potent New Generation Bisphosphonate Indications & Usage ZOMETA? (zoledronic acid) injection is indicated for the treatment of patients with multiple myeloma and patients with documented bone metastases from solid tumors, in conjunction with standard antineoplastic therapy. Prostate cancer should have progressed after treatment with at least one hormonal therapy. One Dose for All Indications For the treatment of bone metastases, the recommended dose of ZOMETA is 4 mg, diluted in 100 mL of solution, administered as an IV infusion over no less than 15 minutes, every 3 to 4 weeks. I don't see osteoporsis listed as a use for this drug. Also it is given every 3-4 weeks. I am just making the observation your HMO has allowed therapy way beyond the standard of care with very little limitations. And does your Docs agree that you are stage IV..or are ou self diagnosising this? And yes I did read the making of hercptin. Alex > Alex wrote: << The care a HMO and PPO offers should be the same. >> > [quoted text clipped - 39 lines] > book, THE MAKING OF HERCEPTIN? There are still some on it who have been on it > since initial clinical trials. Alex wrote << And does your Docs agree that you are stage IV..or are ou self diagnosising this? And yes I did read the making of hercptin. I am not saying for sure that I was stage IV--I am saying that nobody quite knows and that could be because the enlarged aortocaval and retroperitoneal nodes, although stable, were never biopsied. The largest--the aortocaval was 2.5 cm. The first 2nd opinion private onc I consulted with said that it didn't matter what stage one was at but how one was treated. All I know is that my path. report wasn't 'good' news. Alex, I tried to attach some info (research) re. bisphosphonates and bone health but couldn't do it on the newsgroup so will email what I have but am going to see if I have abstracts for here http://www.drmirkin.com/joints/9919.html "9919 -- 3/13/02 A NEW WAY TO STRENGTHEN BONES Gabe Mirkin, M.D. A study in the New England Journal of Medicine shows that a single high-dose intravenous infusion of a drug called zoledronic acid strengthens bones significantly, as much as taking Fosamax for an entire year, and as much as taking a lower does of the same drug intravenously four times a year. Zoledronic acid belongs to a class of drugs called bisphosphonates that help strengthen bones. Your bones change all the time. Every day, certain bone cells called osteoblasts bring calcium into bones to make them stronger. Other cells called osteoclasts carry calcium out of bone to make them weaker. Your bones are strongest when you are 20 years old. If you lift heavy weights, your bones can retain their strength as you age, but as you age, the osteoclasts do more work than the osteoblasts, so most people spes with slight trauma and die from the complications. You are at increased risk for osteoporosis if you are thin, have blond hair or blue eyes, drink more than two drinks a day, smoke, do not exercise, eat huge amounts of meat, or are a woman who goes into menopause before age 52. You can help to prevent or treat osteoporosis by lifting heavy weights, which increases the effect of osteoblasts strengthening bones. Bisphosphonates block osteoclasts from taking calcium out of bones, while they leave osteoblasts alone, for a net gain of calcium taken in bones. Fosamax is taken by millions of Americans each week to treat osteoporosis. However, a large percentage of people get stomach burning and belching from this drug. If you suffer from osteoporosis, you can take Fosamax, Actonel, or Didronel. If these pills upset your stomach or you are in hurry to strengthen your bones, a single intravenous infusion of zoledronic acid will strengthen your bones as much as taking pills for a whole year. New England Journal of Medicine, March 13, 2002 Health Topics from • The Dr. Gabe Mirkin Show • Box 10, Kensington MD 20895 Transcripts of segments of The Dr. Gabe Mirkin Show are provided as a service to listeners at no charge. Dr. Mirkin's opinions and the references cited are for information only, and are not intended to diagnose or prescribe. For your specific diagnosis and treatment, consult your doctor or health care provider. " "http://www.abstracts-on-line.com/abstracts/BCS/search/Results.asp?Num=0%2 E45805 [356] The bisphosphonate zoledronic acid downregulates signalling through Ras effector pathways in human breast cancer cell lines. Pickering LM, Senaratne SG, Mansi JL, Colston KW. St. George's Hospital Medical School, London, United Kingdom Date/Time: Thursday, December 12, 2002 7:00 AM Location: Session Info. : Poster Session III: Treatment: Other Therapies (7:00 AM-9:00 AM) Background: Bisphosphonates are of proven efficacy in limiting skeletal related morbidity in patients with advanced breast cancer. Their role in adjuvant therapy remains to be determined and the mechanisms by which they exert their effects are inadequately understood. We have previously demonstrated that bisphosphonates directly induce apoptosis in breast cancer cell lines through impaired membrane localisation of Ras and that zoledronic acid impairs adhesion of viable breast cancer cells to mineralised matrices prior to inducing apoptosis in these cells. We have now further investigated the signalling pathways involved in these effects. Materials and Methods: MCF-7, T47 D and Hs578T breast cancer cells were treated with 100 mM zoledronic acid or vehicle for 1-3 days. Equivalent protein extracts from whole cell lysates were analysed by western blotting. Levels of phosphorylated and total AKT (protein kinase B), ERK (p44/42 mitogen-activated protein kinase), CREB (cyclic AMP response element binding protein) and bad112 were measured and compared. Results: Zoledronic acid affected ras mediated survival pathways in a differential and cell-specific manner. Treated MCF-7 and T47 D cells demonstrated a downregulation of phosphorylated ERK but not phosphorylated AKT. Levels of phosphorylated CREB and bad112, signalling proteins downstream of ERK, were also reduced in both cell lines. Conversely, treated Hs578T cells demonstrated marked downregulation of phosphorylated AKT levels and a downregulation in levels of phosphorylated bad112 but no demonstrable change in ERK or CREB levels. Discussion: Our findings suggest that zoledronic acid downregulates effectors of the Ras pathway in a cell specific manner. ERK appears to be a more important regulator of survival than AKT in MCF-7 and T47 D cells although the converse appears to be the case in Hs578T cells. The factors that determine the dominant survival pathway in individual cell types and the regulators of this process remain to be determined. Alteration in levels of activated signal transduction protein with zoledronic acid treatment.in breast cancer cell lines AKT ERK CREB bad112 MCF-7 T47 D Hs 578T" Here is another one. Alex, and anyone else who is interested...I first learned about it not too long after I was dx'd. I met a gal with a similar dx to mine re. invasive lobular with pos. nodes who was also ER+ and Her 2+ She had similar treatment except she was also started on Femara and Zolodex (since she was younger and pre-menopausal), but her onc. also started her on Zometa as well, prophylactically. I don't recall how often she was getting it, though. "http://www.abstracts-on-line.com/abstracts/BCS/search/results.asp?Num=0%2 E2623209 [274] Intravenous administration of zoledronic acid offers long-term protection against bone loss in rats induced as a consequence of estrogen deprivation. Gasser JA, Green JR, Bhatnagar AS, Evans DB. Novartis Pharma AG, Basel, Switzerland; WWS Group Ltd, Muttenz, Switzerland Date/Time: Wednesday, December 11, 2002 5:30 PM Location: Session Info. : Poster Session II: Treatment: Endocrine Therapy (5:30 PM-7:30 PM) Background: Aromatase inhibitors (AIs) are being evaluated in adjuvant endocrine therapy of hormone-dependent breast cancer. AIs induce estrogen-deprivation, a known consequence of which is increased bone loss. Bisphosphonates (BPs) have been shown to exert a bone protective effect in postmenopausal (PM) women (Reid et al. New Engl J Med 2002 346:653-661). We investigated whether bone loss induced in rats by either ovariectomy (OVX) or the AI letrozole (Let) could be prevented by the new potent BP zoledronic acid (Zol). Material and Methods: Adult, skeletally mature, 8-month-old female Wistar rats were assigned to the following treatment groups (n=10): Sham (vehicle), OVX, Let-treated, OVX + Zol and Let + Zol. Zol was injected into the tail vein as a single dose of 0.8, 4 or 20 ug/kg either before OVX or before initiating daily oral dosing of Let (1 mg/kg) for 12 weeks. Changes in bone mineral density and structure were monitored non-invasively by peripheral quantitative computed tomography (pQCT) at 0, 2, 4, 8 and 12 weeks. Results: Both OVX and Let resulted in the expected loss of bone, the initial loss due to OVX was higher than Let. OVX led to loss of 36 % cancellous bone and a 22% decrease in cortical thickness in the proximal tibial metaphysis whereas Let resulted in 18% and 19% decrease in these compartments respectively at 12 weeks. The effect of Zol was dose-dependent with 20 ug/kg fully protecting against both OVX- and Let-induced cancellous and endocortical bone loss at all time-points. At 4 ug/kg, the compound was fully protective for up to 8 weeks and significantly reduced cancellous bone loss at 12 weeks. Cortical thinning was also significantly reduced by 45% (OVX) and 64% (Let) respectively at the 4 ug/kg dose. The lowest Zol dose did not achieve statistically significant protection in any bone compartment at 12 weeks. Discussion: Our data indicate for the first time that in rats, Zol dose-dependently protects against bone loss induced by daily oral Let, long-term effects of multiple dosing need to be determined. Zol, at a dose of 20 ug/kg, fully protected against Let-induced bone loss over the study period. These data support the use of Zol in preventing bone loss not only in otherwise healthy PM women but may also reduce bone loss in PM women undergoing adjuvant treatment with AIs in general and Let in particular. Direct dose extrapolation to humans can not be made." I have worked for an insurance company...we had to complete an intensive course on the difference between types of coverage. The company I worked for had a HMO, POS, PPO, and a Medicare HMO. All had the same medical reviewer and followed the same clinical standards, except the Medicare HMO which was limited by the Medicare standards. I work now in the continuing care department of a very large medical center and see many different insurance companies...most are great but there are a few unprincipaled companies who do not provide the care they promised. As far your friend's grandmother - I hope they won a ton of money due to the malpractice issues being denied lifethreatening surgery. Alex > Alex wrote: << The care a HMO and PPO offers should be the same. >> > [quoted text clipped - 39 lines] > book, THE MAKING OF HERCEPTIN? There are still some on it who have been on it > since initial clinical trials. Alex wrote << As far your friend's grandmother - I hope they won a ton of money due to the malpractice issues being denied lifethreatening surgery. >> No, they never sued. One area about our HMO that used to be substandard was dx of children's bone fractures. They missed our friends kids 3 times--and that was only for 2 kids. In my daughter's case she was dropped while rehearsing for a dinner theater show. Her ankle was quite swollen. We went to the ER on a Friday night. She was told it was sprained--given an ace bandage only. We happened to have crutches at home for when she had hurt it a few years ago. She wound up using those 'cause she couldn't bear wt. on it. Monday was a holiday--4th of July. Early Tuesday I called and asked for an orthopedic referral and was told I'd have to see a regular dr. first. I was disgusted--so I went and got a copy of the x-ray they had taken Fri nt. and went to a pediatric orthopedist. He took one look at their x-ray and said, 2nd, 3rd, and 4th metarsal were broken. She was in a full leg cast--in fact 2 different ones for the rest of the summer. We paid out-of-pocket--$600.00 (with discount for 'cash') since we didn't have other insurance. I tried to get reimbursed and am not sure what happened--we were way too busy so never fully pursued the issue...(between 2 working parents, activities, and 3 kids our time was limited) Alex wrote: << Occaisonally a person with early bone mets will have pain but in would be thought it was non cancer related - had an xray or scan that was inconclusive....the pain ( acute pain - where people can't function in a normal fashion, no walks, not being able to go to work etc) goes back to the doc and they are rescanned and the met disease is evident and treated. But usually the treatment is for the pain by giving pallative radiation treatment. I have never seen a case where people had non acute pain and then progress to met disease. I have seen patients who had a scan for reasons other than pain ....for staging reasons or high tumor markers and be positive for bone mets. I think how unfortunate for these patients since they don't offer any treatment for these patients other than will keep an eye on that and offer treatment when you become systomatic. Alex, I did experience acute pain in my shoulder and upper arm--I couldn't lift or hold a glass of water nor could I brush my teeth. This lasted for awhile. It improved after I increased the Celebrex to 800 mg/day and had another infusion of Zometa. Now as far as the walks and pain--I understand what you are saying. I first experienced the excruciating sciatic pain last April--woke me up--I couldn't move. It was on-going through the summer although not of the consistent severe intensity but it hurt quite alot. In September when I went on my first training walk for the 3-day, I wasn't sure how I could do it--I was in agony--had tears in my eyes it hurt so badly but I pushed on. After awhile the pain lessened--still hurt but I either became used to it or just endured. I am guessing that the exercise increased the endorphins which either masked or made the pain more tolerable. If you should have a chance, I highly recommend a newly published book, THE ANATOMY OF HOPE. One of the chapters was about the author, a physician himself, where he talks about excruciating pain from spinal surgery which resulted in limitations for almost 20 years. He didn't have alot of faith that anything could be done but went to the same hospital where basketball player Larry Bird, who returned to basketball after being in an accident that crushed his spine after he was treated at Baptist Hospital or Rehab Center in, I think New Jersey (or somewhere on the East Coast). Interestingly, the MRI's of my spine showed a synovial cyst. The first one was in April. The one done in July showed that it remained the same. When I reported the symptoms my oncologist told me to contact my neurologist and ask for an appt. with the neurosurgeon. He wouldn't refer me directly. My neurologist had retired and I just happened to have an appt. with a new one in a few weeks but couldn't get seen any sooner. The 2nd opinion oncologist (through HMO) ordered the MRI of the lumbar spine which showed either a cyst or mass. Meanwhile my internist referred me directly to the neurosurgeon who, in turn referred me to the spine dr. I had another MRI of the thoracic and cervical spines--which also showed things going on (although didn't quite understand them). The spine dr(s). felt that it was a cyst because the edges were smooth and regular. Since the walk, I have felt better. The lower back pain is less. Sometimes the lower leg swelling has even improved--did so after I did my first 13.5 mile walk. In addition, I just had a new MRI of the lumbar and thoracic spine last month. Interestingly, there has been a change--both good and not so good. The good part is that the cyst is smaller (something that supposedly rarely occurs--if it is a cyst). What wasn't quite as good was that the borders are no longer regular (which is why the spine dr(s) thought it most likely to be a cyst rather than a mass. Alex wrote: << Time has been on your side, there are women who don't even finish there intial therapy without having the tumor reappear. You are close to 2 years out ( if I remember correctly).....that is great... ALex That is very true. I am so very fortunate. I think the reason I did so well was because I was allowed the Herceptin. I think I have continued to do well is because of all the other stuff that I did or am doing. Currently I am also taking Celebrex and Doxycycline. I am also on a statin drug as well as Levothroid (which I started after I became hypothyroid). In addition I am also on Arimidex and Beta Seron (interferon beta) which is for the M.S. I am not sure if the latter has been helpful (improving immune system) or was what allowed the cancer cells to take hold initially. Alex, I am not dissatisfied with the treatment I've received through our HMO. I am concerned though that not all the 'correct' tests for the symptoms I have been having were given and am also concerned about the interpretation of some of the scans for several reasons which I've previously described. One was that after my last bone scan, when I got off the table I saw my films lit up on the screen. I went over and asked if I could take a look. The technician not only said sure but went on to point out (on her own initiative--I didn't say a word) the "unusual hot spots" (her words) in the left shoulder (one that hurts) and lower back. I had been referred for the scan by the oncologist. Under referral info he wrote that I had hip pain (I didn't---it was lower back discomfort) but mainy had shoulder, upper arm pain which sometimes extended along clavicle, up side of neck, and in lymph node area. The report of the scan did state mild uptake in lower back area )L5/L5) but there was absolutely no mention of the shoulders. If one looks at the film, the black areas (i.e. in shoulders) can clearly be seen. My concern is not that I am not getting tests (although am not sure they are always the right ones for the presenting, reported symptoms, but their interpretation. Yes, I thik you are very patient active, I also think you have had aggresive treatment and have not been limited by your HMO. > Alex wrote: << Time has been on your side, > there are women who don't even finish there intial therapy without having [quoted text clipped - 28 lines] > > >> Alex wrote << Yes, I thik you are very patient active, I also think you have had aggresive treatment and have not been limited by your HMO.>> Yes, I got the minim standard for basic chemo with the exception of also getting Herceptin--which was above and beyond. I don't feel comfortable that it was hit with the harder stuff hard enough or long enough. In fact I did ask for 2 more Taxotere which a private onc. concurred with. He treated my friend who was dx'd at age 33 with 14 pos. nodes. She and another poster, Barb, are the only ones I know who had more than 10 positive nodes and are still alive. Both had a full year of chemo. My friend's onc varied it--gave it to her weekly at higher doses than was usually used (and weekly was not the standard of the time). She was also given 4 different drugs but doesn't remember them--one had only a #--was in experimental stage--but she wasn't in clinical trial, if I remember correctly. All I can say is she is still here and has not had a recurrence. He is the onc who suggested the once yearly infusion of the Zometa--said he did it for his wife who doesn't have b.c. to prevent osteoporosis. Now, the 2nd opinion onc who is allowing me that is a bit old-fashioned in basic treatment--said he wouldn't have given me the Herceptin, initially, whereas the first private onc I saw said he was thrilled that I was allowed to have it. I once read that enough time is not put into choosing a dr.--we choose new cars more carefully than we do someone who is going to take care of us. The article went onto say we should interview several and 'try them out' ... just some food for thought. I agree that choosing Doctors is very important, but I also believe very strongly that they need to be connected to a good Hospital to back them up. Biphosphinates have been around for decades... since I had chemo premenopausal - I am at high risk for osteopenia therefore I am prescribed Fosamax.You should listen to the conference I posted earlier. These Docs are not big fans of scans in general and do not like PET scans in treatment of breast cancer. They also pointed out all stage IV should be confirmed with tissue confirmation before any treatment. I can tell you this confirms what I see and hear in the Boston area. << They also pointed out all stage IV should be confirmed with tissue confirmation before any treatment. I can tell you this confirms what I see and hear in the Boston area. I think that is what my physicians feel as well--although I have read that some have had chemo based on an enlarged lymph node--suggestive of mets--and the lymph node decreased in size afterwards. Also, bone mets are often dx'd without benefit of bone marrow biopsy which could and should be done earlier and/or for most, if not all, according to latest research recommendations. << "Herceptin is FDA approved for first-line use in combination with paclitaxel for the treatment of HER2 protein overexpressing metastatic breast cancer in patients who have not received chemotherapy for their metastatic disease. There is a newer regime that is showing good promise: Taxotere, Carboplatin, and Herceptin. I think some oncologists at one of the major Univ hospitals are allowing patients to have it who are not in the trials. There are now clinical trials using it for those who, I believe, are stage I and there are new trials for using it for 2 years in those who do not have metastatic disease. |
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