Life does not end with a stage IV diagnosis (really!)
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Artista,
I can relate to the elementary school setting, as I teach first grade. However, I have had little to no advice on cancer cures and no church prayers since it's well known that I'm Jewish 😀. I have been part of my school community for well over 20 years, as both a parent and a teacher. We have had two young moms die from bc in recent years. One went conventional but her bc was highly aggressive and she succumbed, but with hospice help, it was as peaceful as possible. The other had a recurrence from a lower stage and went alternative. Her tumor eventually broke the the skin near her collarbone, but under pressure from a family member she continued alt tx. She eventually saw an mo, but he could do little more than keep her comfortable. Two other teachers at my school and a tech aide have also been dx'ed with bc. On paper, I am the "worst""but continue to defy the odds. I am very open with people who want to make sincere, intelligent inquiries about my health, but am very clear that I have full confidence in my medical care and if they want to suggest coffee, it had better be a non-fat mocha, no whip!0 -
yes, since signing up to receive the links to watch the alternative treatment videos I have gotten tons of emails ... All sales pitches. I did like some of the things I heard about but wouldn't do anything without checking with my oncologist first. I've been around for 7 + years now because of conventional treatment, and maybe some of the little things I do to complement that treatment. I totally believe in what I do. I am doing my best to stay around for a cure! karen, you make me laugh!
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Caryn, I too have been of our school system for over 20 years as parent/employee! I don't mind being open with my friends at school. I just hate the "Lookie-loo's" that have no discretion and want to stand in the middle of my afternoon and ask me VERY personal questions and stand there with the teary eyed sadness and won't move along. I need positive vibes, I don't like to get emotional at work, I like to forget about it for just a small portion of my day! I miss being a normal "Joe" tremendously. May we all continue to defy the odds until something better comes along.......You go Gator Gal I'm with you! They will have to drag me kicking and screaming!!! LOL!
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Thanks suersis! That's OK I'm not sure what supplements I would take anyway. I'm just sticking with pretty good nutrition and standard vitamins. HaHa thats a good idea to offer to pray for the church! Caryn, maybe next time someone approaches me with an annoying suggestion I will ask them for a non-fat latte! (No whip!) LOL!
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Gatorgal I get where your coming from. However I found there was a lot of good information in this docu-series, one had to do some sifting but none the less I found it beneficial. I understand having chosen a treatment path that you want to stick with what works. I think however we can try all sorts of things. As I'm not getting any chemo and only on tamoxifen I figure it's fair game.
Artistatheart positive vibes are everything agree wholeheartedly . A lot of the time I think people don't know how to react . It comes down to that old adegde ..If you don't have something nice to say than don't say anything or as I see it MOVE ON. Lol
I wish all you ladies a pain free day with lots of sunshine😊😊
Wendy
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I shared on another thread that my well-intentioned sister in law sent me a link to watch this series for free. First,she referred to Ty Bollinger as "Doctor" and I have learned that he isn't one. She also suggests I skip the first video in the series, yet I learned that he says some controversial things in it and I think she doesn't want me turned off to the rest of the series by hearing some inflammatory stuff right away. Am I correct that his philosophies include coffee enemas, sin as th cause of cancer and big Pharma conspiracies are why there's no cancer cure? Having been at this for almost five years, it's not anything new I haven't already heard of, along with the budwig diet.
SIL says its nine videos each 1 1/2 to 2 hours long. I couldn't imagine myself devoting that much time to watching it.0 -
Mr. Bollinger is a CPA.
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I don't care what he is, he did this the sake of clarity. I haven't been at this to long and anything that gives hope as far as I'm concerned is a good thing. Charging five dollars per episode is chump change . I hope he gets rich on this that would mean that it's being seen. Information is power however we decide to use it.
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Wendy, It's important to find hope and inspiration and if Mr. Bollinger's message helps people and if it helps you that's great. Especially when you're new to the diagnosis....I remember clinging to all the hopeful stories and information I could get my hands on after I was first diagnosed. I've read many books on various aspects of cancer and cures ever since I was diagnosed. I certainly believe in complimentary medicine and approaches. It must be said, tho, that it's hard to argue with the fact that antihormonals have added to the life span of many er+ stage iv breast cancer patients and equally hard to argue wtih the fact that the drug Herceptin has completely changed the outcome for many women with agressive triple positive bc, stage iv or otherwise.
Some of the wonderful books I've read:
Anti-Cancer: A New Way of Life by Dr. David Servan-Schreiber
Radical Remission: Surviving Cancer Against All Odds by Kelly Turner, Ph.d.,
Kitchen Table Wisdom: Stories that Heal by Rachel Naomi Remen, M.D.
Getting Well Again by O. Carl Simonton M.D., Stephanie Matthews-Simonton and James Creighton
I've gleaned valuable insight, approaches and information from all these and other books. You can see from the titles that I am open minded when it comes to applying alternative methods to conventional medicine.
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Hi everyone
I have watched a bit of the mentioned videos with Ty Bollinger. I am torn with trying to decide IF I should try alternative medicine. My brother is a definate advocate for alternative. As I told him I am afraid not to go the chemo route. Let me at least say this. I firmly believe that there is more to this type of treatment than the oncologists want to do. The most truthful thing said,I believe, is that oncologists or even MD's are not even given the knowledge to these things in their medical training. For instance, IVP. I asked my oncologist if I could do that. He just looked at me and said he didn't know what that was. I asked about IV Vitamin C to build the immune system. He really didn't want to discuss it. He said he will not do anything that is not FDA approved. Take Metformin. If you look into the government trials on PubMed they claim it can kill cancer stem cells. Chemo will NOT kill stem cells even when you are in remission. Ask your Dr. And dear ladies after this long rant, I too will still go for my chemo tomorrow and pray that it will take away this horrible demon. When I go tomorrow I am going to ask my oncologist about the Metformin. I will let you know what he says.
There are also a few other things I am going to try (with the Dr's ok, of course) Reservatrol, Enzymes, Modified Citrus Pectin and the IV Vit. There is a woman on here, 15 years out of Stage !V, and she gets the IV Vit C treatments.
Love and Hugs to all ladies on here. I thing positive thinking is our best medicine.
Rosieo
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TheDivineMr...agreed I'm not against conventional medicine if I didn't have tamoxifen I may be in a lot worse shape. I will check out you book suggestions as well thanks👍
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Hey Rosieo....I agree with the positive thinking being the best medicine. I am not really all into the alternative medicine. The Chemo my ONC is giving me seems to be working....maybe if I was down to my last options. I actually had a friend that was stage IV prostrate cancer several years ago that his wife was so insistent on the alternative medicine....he had turned orange from the supplements and juicing she had him on. He basically didn't have "quality of life". I want to enjoy my life and have quality of life. If it gets down to my not being able to enjoy an occasional glass of wine with my dinner. Or eating only certain things...not sure I would consider that "quality" of life.
Don't get me wrong...I think everyone has to do what they feel is best for them!!
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Quality of life is a priority. I'm not going to be miserable, definitely not when it comes to food. I've made some nutritional changes, sure. But I've had chemo, and I'm glad I did, and I know what that's like to have my sense of taste totally screwed up and once it returned to normal I can appreciate having it back. I'm not going to rigidly monitor my food intake or alter my eating habits to keep a relative from worrying that if I eat that delicious chewy frosted brownie with walnuts, the cancer will kill me and then poor relative will have to deal with their grief. I want to say, "Guess what? I'm not living for you, people! It's about me!" I've drafted a kind letter to send to SIL, tho, and let her know among other things that I've had an exceptional response to conventional medicine.
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LOL! suersis you crack me up! I'm with you and Divine. I trust that conventional therapies do work very often (unfortunately not 100%) I also believe in alternative therapies when there is enough research to warrant it and positively does no harm. I agree that Medical Dr's are sorely ill informed when it comes to alternative or complimentary therapies. Divine, I think we all know if sin were the cause of cancer pretty much the entire population would be struck down! Wendy, sometimes it isn't a matter of people feeling awkward but more like morbidly curious and intrusive.I have become pretty good at waving people on when they get irritating. My patience runs thin.
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One of my biggest issues with some of the more well known alternative practitioners have been the side servings of revisionist history, religious beliefs, politics or things unrelated to medicine that are often part and parcel of their "practice".These include AIDS and Holocaust deniers, those who believe that you must share their religious beliefs , and enough conspiracy theories to make you believe that even your mama is plotting against you.
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I agree, Caryn, and don't forget the therapists that want to "balance your aura with the spirits in the ether"! They always crack me up! After they come out with something like that it's very hard to take anything else they say seriously.
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Artistatheart totally agree with the idea that the medical profession knows very little of alternative therapy. Doctors have a solid ten hours training on natural and alternative therapies that's it. My daughter was born in Berlin and I remember ( even though it was awhile ago) that a mother to be was treated solely by a midwife. This person knew to smear cold mashed potatoes on inflamed breast to draw out infections she also knew to give a mother ground fennel tea to alleviate gas in the infant when they would nurse. These all worked. Sometimes the alternative means are a good choice sometimes not. The main thing for me is keeping an open mind to everything. I take marijuana oil three times a day and do my other things and who knows I may get coffee shoved up my wahoo too. Whatever I need to do I will do.
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"balance your aura with the spirits in the ether".....got a chuckle out of that.
And just supposing there really was this big Pharma conspiracy? What exactly does my SIL think I can do about it?
I recently read a book about thalidomide called Dark Remedy. Thalidomide was a drug given as a sedative to women in the late 1950s & early 60s. Many women who got pregnant while taking it gave birth to horribly deformed babies. The book details how the manufacturer made big profits on its sales and even when they began learning of the horrific deformities, they concealed the information over and over again for several years! And even knowing this, they still sought approval to distribute thalidomide in the United States because of its potential for the biggest profits.
However, Dr. Francis Kelsey (a woman) in the F.D.A. here in the U.S. stood up to the drug company. She refused to approve it, insisting on scientific evidence (which the manufacture could not supply) that the drug did not cross the placenta. She was bullied, bribed and pressured, over and over, by the manufacturer and doctors associated with the drug trying to wear her down. She held her ground, refusing to approve thalidomide and because of it, the U.S. was spared a horrific travesty. When all of this finally saw the light of day, she received the Presidential Medal of Federal Civilian Service by President Kennedy for her actions.
So yes, these type things can happen, and big Pharma is capable of covering up and misleading the public and being about profits. But I have to believe there are present day Francis Kelsey's out there doing the right thing, too.
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I am not against naturopathic treatments, in conjunction with traditional treatments. In fact, am making an appointment to see a naturopathic doctor after my consult at Hopkins. I want to do everything in my power to stretch out my life. I do, however, credit conventions, treatment with keeping me going for 7 years with stage IV BC. I think one of the first things most of us do when we get the cancer diagnosis is hit Dr. Google and research til it all starts running together. I'd like a naturopathic doctor to help me sort things out and advise me as to what kinds of things I can do that would "complement" my traditional treatment. I love bestbird's research "book" and refer to it all the time. I wish everyone well, whatever course of treatment they choose. We can learn from one another
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Please read - great research, consider joining
MBCproject, a collaborative effort between researchers, doctors and patients launched at the Broad Institute of MIT and Harvard as well as Dana Farber Cancer Institute.
The URL to join the MBCproject is MBCproject.org
This group was made to keep people up to date with the Metastatic Breast Cancer Project. We respectfully ask that people share knowledge, but not solicitations for fundraising.
...The Metastatic Breast Cancer Project is a research project focused solely on metastatic breast cancer. Our goal is to generate a comprehensive set of data that will be stripped of personal information and shared with the entire research community so that all scientists can take part in the discoveries made possible by direct patient engagement. Some of the initial studies that we are launching will be:
• patients with extraordinary responses to therapies
• patients who have metastatic disease from their first diagnosis (de novo metastatic disease)
• young people with metastatic disease
• patients of racial and ethnic groups that have been underrepresented in genomic studies to date.
Our first study will focus on patients with extraordinary responses to therapies. Dr. Wagle and other oncologists have learned how to better match patients to certain drugs, how to repurpose drugs that were otherwise considered "failures", and how to design new strategies for targeting cancer. Here's a recent article, which examines how we are approaching treatments differently as a result of these important discoveries: http://ow.ly/OQ6lD. New clinical trials have already started based on the discoveries from these patients. The key here is that patients who have had extraordinary responses are very difficult to find at any one medical center, but by casting a wide net across the US, we might be able to identify enough patients who are willing to partner with us to make very meaningful discoveries.
Our research will be carried out at the Broad Institute in collaboration with Dana-Farber Cancer Institute. In addition, we are conducting this initiative in direct partnership with patients, and with a number of advocacy organizations that focus on metastatic breast cancer such as the Metastatic Breast Cancer Alliance, the Metastatic Breast Cancer Network, Avon, Living Beyond Breast Cancer, the Young Survivors Coalition, and the Inflammatory Breast Cancer Research Foundation.
When we launch this project in a few months, we will reach out directly to patients across the country and ask them share a portion of their stored tumor samples, their medical records and their voice. Our scientific investigations will start with a focused group of patients, but we will expand over time based on the patients who sign up to allow us to contact them. We would love to hear from anyone interested in this project. Please feel free to reach us at info@MBCproject.org, or on twitter, @corrie_painter and @Nikhilwagle using the hashtag #MBCproject0 -
Bel, Thank you for posting this. I am SO happy that this is research is happening. I am especially happy about the study of super responders. There is a key there that needs to be investigated.
Lynne
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GatorGal, well said! I think we all feel the sense of urgency to do what we can to live as long a s possible, but the Google search" quest ca be very overwhelming and taxing. As Hope says "I don't want to waste one single moment on Cancer I don't have to". It is hard to go slow, trust your Dr's in many cases and the WAITING to see if the current tx is working is hell. But I too think it is prudent to take things one at a time and get as much guidance and support as you ca in making the decisions. Best to all, Happy Halloween!!
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Nel, good find and thanks for sharing about the MBCproject. Seems to be that MBC is starting to get more research notice and that's a great thing!
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I found this thread this afternoon and love it. I was trying to read all 34 pages, but gave up after 10, and went to the last 5 pages.
My story might be a bit more unique, and I have literally been fighting my cancer battle with my brother and sister. On June 26, 2014, I was diagnosed with stage 3C TNBC in my left breast and widespread stage 0 ER+ cancer in my right breast. I had 4 biweekly dose dense rounds of AC, followed by 12 weekly Taxols, followed by a double mastectomy with two sentinel node dissections. The right side was clear, but they found a total of 4 positive nodes on the left side. I opted for no reconstruction. I was totally blindsided by my breast cancer. Cancer runs heavily in my family, but not breast cancer, so I always thought that if I got cancer, it would either be colon or lung cancer.
In September 2014, we learned that my sister (3 years younger; I am 55) had stage 3A rectal cancer, and in November, we learned that my brother's (2 years older) colon cancer which he had in October 2013 (clear margins and lymph nodes) had metastasized to his pancreas and liver. My Dad had passed away 3 years ago, and while he had other problems, we learned that he had stage 4 liver cancer about 6 weeks before he died. My Mom had stage 1A colon cancer in 2006, and I had stage 1A cervical cancer in 2002. That is 100% cancer in one family, and some of us went back for seconds.
So this has really been a tough few years for my family, and to make it even more interesting, my Mom started losing her vision while Dad was sick, and her vision has deteriorated since, to the point where she was nearly blind. Fortunately, after hundreds of various doctor's appointments, they've managed to improve her vision a little bit. And just on a side note, my brother and sister in law moved in with my parents to help out just a few months before Dad died. SIL is a geriatric nurse, so she took care of Dad in his last days, then she took care of Mom, and now she takes care of all of us. And about a month before I was diagnosed, my sweet husband's mother was diagnosed with moderate Alzheimer's. While I was in the middle of treatment, he ended up moving her from independent living, and at the beginning of the summer, he finally had to move her to a nursing home. She doesn't know where she is or what year it is. I've only been able to see her a handful of times this past year, and it's been a few months. We used to do things together all the time since she doesn't drive, and I don't even know if she would remember me.
At any rate, when I was first diagnosed, my cancer was advanced enough that they wanted to get a PET scan to make sure it hadn't spread. The did find 3 tiny nodules in my lungs which were too small to diagnose. I am in Alabama, and those tiny lung nodules are common in people that live in this part of the country because of something in the soil, but the doctor was concerned that they might be cancer, but he didn't want to delay my treatment while I recovered from a major lung surgery.
When chemo ended, the MO repeated the CT, and the nodules were gone, making him think they were probably cancer. This was the week before Christmas, and by that time, I 100% believed that at some point I would either have a recurrence or end up with another cancer, so I was determined to live well once I recovered from radiation, and hope for at least a few years of good health.
I had my surgery on January 15, and started radiation 5 weeks later. I did well until the 5th week. My skin started burning, and eventually the entire treatment area became raw, weepy, and extremely painful. The week after radiation ended, it showed no sign of healing, and I had one little place that was getting infected. I had an appointment with my MO that week, and they gave me some Silver Sulfadene (sp) cream. Then he dropped the bomb. And I should have been expecting this, but I honestly thought that once I healed from radiation, I was home free. He mentioned the lung nodules and said that he still thought there was a possibility they were cancer, but he wasn't comfortable letting them go as nothing. He wanted me to have a CT of my chest, once I'd had a chance to heal.
About a week before the CT, I developed a dry cough and started to develop some irritation in my windpipe. I thought it was just allergies and the weather changing. But the CT showed a lot of inflammation, and it also showed that the nodules were not only back, but they were larger then they had been on the original scan, but they were still to small to biopsy. He wanted to give them a couple of months to see what they would do, then do a PET.
Over the next three weeks, the cough got a lot worse, and I couldn't do the smallest tasks without getting winded, which would get me coughing so hard it would upset my stomach. I called the nurse desk at the cancer center, and they moved my PET up to the following week, so it was about a month after the CT. The PET showed a lot of scarring and lung damage from radiation, and it also showed a couple of enlarged lymph nodes right at the bottom of my wind pipe. So I was sent to a pulmonologist for a bronchoscopy and biopsy.
The biopsy was done during the bronchoscopy and the results showed breast cancer cells in the lymph nodes and my chest. It also showed a lot of scarring and radiation pneumonitis to my left lung. I've been on heavy steroids since the beginning of August, and I've also been taking Xeloda 1500 mg twice a day, 7 days on, 7 days off. When I went back for my follow-up with the pulmonologist, I had a chest x-ray, and he is weaning me off of the steroids. He's seeing even more damage then he did on the CT/PET, and is wondering if the steroids might be masking some kind of infection. As for the cancer, the MO is hoping to keep me on the Xeloda for at least a year. Thursday, I began my 8th cycle on the Xeloda and will be having another CT/PET November 30. The pulmonologist did say he might do another bronchoscopy after he sees the CT to take a closer look at my left lung. He used a general anesthesia for the first one. I sure hope he does for the second one.
Sorry. I know this post is getting really long. As you can see, I really didn't get to enjoy that time being finished with treatment, and I still have some side effects from the first chemos. I have a lot of neuropathy in my hands and feet, and even though I haven't experienced the specific symptoms of hand foot syndrome from the Xeloda, my feet seem to be more tender, and sometimes downright hurt when I walk. I use a cane, because I'm always afraid I will step wrong and either fall or turn an ankle. My feet tinkle, and I feel like I am wearing socks even when I'm not, but rather than my feet feeling numb, I have what I call Princess and the Pea feet, meaning that I can step on a bread crumb with socks on, and I feel like I've just stepped on a sharp rock barefooted. I also get tired really easily, like just cleaning out the dishwasher, I have to sit down. Makes it really hard to clean my house. I really want to clean it, I just haven't had the energy. We did have a cleaning service in here until March of this year when I foolishly decided that I was well enough to handle it on my own. The company we chose came once a month, and we thought they charged too much for what they did, although I sure loved my house right after they left. I have a really small house, so I should be able to handle it. And finally, I can only walk very short distances without getting really winded. I finally broke down and got a handicapped placard for my car, and I also got one of the rollator rolling walkers with the seat, so I always have a place to sit if I get too winded.
Reading how well some of you are doing, and much you are doing activity-wise, I must admit it makes me want to push a little harder. I normally get up, eat breakfast, take my meds, do an hour or two of Bible study, then I may try to do a couple of really simple chores, and I spend the rest of the day on the couch, watching TV, crocheting, and napping. Just wondering how many of you have this problem, and how many of you have mobility issues.
As for how I cope: I was a born-again Christian before cancer, and over the last 17 months, I have gotten closer to God than I've ever been in my life. God keeps my heart filled with His joy and peace--most of the time. I do have my moments, and I do have days when my sunny disposition isn't all that sunny. I also take 30 mg. of Paxil a day, and I take Ativan every day.
Just remember, though, that whether Jewish or Christian, the Old Testament God is the same God that's in the New Testament. He always takes care of us, and nothing will happen without His permission. Whatever happens to us, He is in control, and He's got this!!
Jeanelle
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Hi Jeanelle,
Very sorry to hear about all of the losses you've had. I'm sure it's been a huge emotional challenge.
Yes, some of us are doing very well and lead fairly normal lives. Why this is, I wish I knew. Please know that , for me, pushing myself had absolutely nothing to do with my current state. Let how you feel, and what your doctors advise, be your guide to how much you can do. This disease, even at stage IV , has such a wide variations that it boggles the mind.
Lastly, I am glad that you have found comfort in religion. Please remember that many of our sisters are neither Christians nor Jews and may even be atheists. I want everyone to feel welcome here as they share how they live and thrive with bc. So why you may feel that G-d controls all, remember that not all do.Take care.
Caryn
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Hi Janelle,
Wow...you've been through a lot. I would echo what Caryn said regarding pushing yourself. Listen to your body. I have days like today when I've had no nap (!) and did gardening. Last weekend, all I did was sleep.
I practice Buddhism and am not Christian. That said, I believe that so long as your spiritual path works for you - it's obviously right for you! I'm glad you have your faith to get you through and bring you comfort.
Welcome to the group!
Terre
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Caryn, and Terre, Thank you so much for the welcome. I certainly would never want to offend anyone with my religion, since all that would do is turn them off and make them feel bad. It's just been such a comfort to me with all that has happened, I wanted to at least plant a seed.
I want to thank you again for this thread. So many of the places I've been actually scare me, because I wonder if I am reading about myself a few years down the road. I have been told that while the average survival is 3-5 years, with all the new meds out there, women are living much longer. My breast surgeon said the same thing. The way I look at any of those stats is that they are historical figures, involving a specific group of women in a specific time period. I believe that those stats really have little to do with me, because no one really knows.
Coming here and seeing what some of you ladies are still able to do is really encouraging. I may be fooling myself, but I do think that my stage 4 disease is in it's very early stages. BTW, googling stage 4 blogs, I found a lady that lives in Seattle that has been living with mets for 13 years.
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jeanelle,
Whatever comfort and support we can find, whether it is religious or not is very important. I am glad you have found yours 😊
I know it may be tough, but try not to spend too much time worrying about the future, or whether the fate of others may be yours as well. The future will come whether we worry or not. Living is for today.
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Good advice Caryn, as usual.....
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Well said as always Caryn. As my husband says, "worrying won't change the outcome".
I posted this in the dark clouds thread, but thought I'd post here too. All about perspective.
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