Stage IV NED crew : lets support each other
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Salius- Thank you for being such a cheerleader. Honestly!!
April, I appreciate the positivity so so so much- it reminds me to be positive and keep going
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I’ve not been here for a long time, checking in to say that I’m still NEAD and am 5 years out of secondary diagnosis. Switched treatments last year due to ? progression, I was on Tamoxifen and my Ca125 was rising slowly so I’m now on Letrozole and Abemaciclib. Life is still kind and I’m happy. Much love to you all
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Ah Vevs - I do remember you, mostly as you are out west of me
Wonderful update and you look so well in your photo there!0 -
Lovely to see you Vevs! You look great!
I’m no longer NEAD but do check in here regularly. Same thing ....progression and treatment changes. However new Meds ( Xeloda) are working and healing shown, so I do wonder if I can maybe get back to NEAD... but we’ll see0 -
Hi Sondra and Karen, lovely to see you both here. Thank you for the good wishes. I will check in again if I have any news. Much love to you all
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So I have a question. Or more accurately a few questions: Are any of you long-term NED/NEAD folks on long term disability and/SSDI? If so, have you had any difficulty maintaining those benefits while on extended NED? Has anyone gone back to work after being on LTD and/or SSDI and Medicare for several years?What are your thoughts and experiences? Thanks in advance!
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hi, Margarita, I am not on SSDI but I have researched it some. There are amounts you are allowed to earn before you lose benefits, there are also return-to-work programs like this one -
Not sure if NED status would disqualify us from benefits, maybe someone else who is receiving benefits will know
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I was put on SSDI right away after my MBC dx in 2017 and then two years later onto Medicare. Since they never want to say anyone is "cured" of MBC I don't know why they would force anyone off of benefits. I'm able to work part time ands still recieve SSDI.
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I did not apply for it but I read about SSDI a long time ago. Things may have changed. If memory serves I could have gotten SSDI with my NED status but from what I read it would not be for an indefinite period. I recall someone was NED and got SSDI for 5 or 6 years. Your mileage may vary.
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Thanks for the responses. I guess I have to do a bit of research on what I can and cannot do about work/benefits/health insurance etc. and soul search about what I want to do.
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I called them on the phone to ask questions, the person I spoke with was very helpful
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even though i am NEAD, i still have significant pain from my bone mets, i had two back surgeries because of the vertebral mets and had screws and rods inserted to prevent vertebra from collapsing. so although in theory i am NEAD, because of my pain and pain meds, i have difficulty concentrating on my tasks. my pain management doctor keeps reiterating to me that the pain i have is from the cancer and how it affected my body and he reassures me that i am not overusing my pain meds and that they are most definitely indicated. so right now my disability is continuing. my private disability insurance that i have, (glad i invested in that 25 + years ago) told me that my doctors wrote that i will not fully recover, so they arent bothering me about going back to work right now and are only requiring my doctors to fill out forms once a year now, and i imagine the same is true for ss disability.
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Thanks Olma and ts for sharing that info. It’s really helpful. I also have some lasting side effects like neuropathy and compression fractures etc. and then we never know if or when we might have progression. Sig
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I am not NED, but I’m wondering if anyone here has incorporated holistic remedies that they think have helped them reach NED? Special diet, time-restricted eating, intermittent fasting, CBD oil, meditation, etc
I have been doing “time-restricted” eating for a while, and I’m trying to meditate daily, but have a hard time fitting it into my schedule. I just started guitar lessons to add some joy to life. And I eat a plant based diet with a few cheats.
I would love to know of anything special you have done to help you reach NED.
Thanks
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Hi GoKale, I do believe in holistic approaches and am doing several things. I don't know if they have helped me reach NED but the things I'm doing sure has made me feel better.
I follow a whole30 diet and do intermittent fasting. My Cancer center is big on Naturopathic approaches and had me start several supplements that has shown to be of benefit. Those include: Turkey tail, melatonin (20 mg), vitamin D (10000 ui), calcium with k, green tea, and modified citrus pectin. I added LDN and mistletoe ( injections) a few months ago which has improved my blood counts. I always check with my naturopathic doctor at the cancer center if it's okay to take something new.
I also do guided imagery meditation, check out joe dispensa on ytube. I'll usually fall asleep with one of his guided meditations.
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Dear GoKale4320, those who reached NED and used something additional cannot be sure that these things really helped, as the only way for proof is randomized blind placebo/drug controlled trial. We might have a feeling that something has helped but never the proof. You can PM me, and I can tell you what I think helped and in what way, but again, what you will get is simply... our personal anecdote. Saulius
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Well, I apologize for my post on a taboo topic. I’m also sorry I didn’t make notes before Simone deleted hers. I do understand that any complementary holistic treatment is not confirmed with official studies.
Wishing everyone the best!
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GoKale, Have you seen this forum on BCO?
Complementary & Holistic Medicine
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Intermittent Fasting: Can it Help With Weight Loss? (breastcancer.org)
Gokale, Dr Iyengar from Memorial Sloan Kettering was being interviewed about this. Bottomline: He has not started recommending it to his patients because of lack of data with respect to cancer therapy. Doctors do recommend some of their patients to lose weight
Dr. Neil Iyengar:
Certainly weight loss is a driving factor for studying this approach. We do know that that being overweight or obese does increase the risk of not just metabolic disorders like diabetes or heart disease, but it can also increase the risk of diseases like cancer. There are at least 13 different cancers that are associated with obesity. And so there has been a lot of research looking into weight-loss techniques either to prevent the development of these obesity-related cancers or to prevent a recurrence of an obesity-related cancer after diagnosis.
So, any successful weight loss strategy is certainly very attractive for study in preventing diseases, but there's more than that, of course. Part of what my team studies is how a chronic state of metabolic dysfunction can give rise to cancer cells. And we know that when your body is chronically bathed in high levels of insulin, high levels of glucose, high levels of inflammatory molecules that are common in metabolic disorders, these all provide the building blocks for the development and growth of cancer cells.
Approaches that help to reduce that chronic exposure to molecules that promote cancer growth like insulin or like inflammatory molecules are also very attractive. And intermittent fasting may be a way to put our bodies in periods of metabolic equilibrium where those high levels of insulin have been brought down dramatically. So, that kind of equilibrium or energy balance is also very attractive and very important and a reason why this approach is being studied for disease prevention.
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I did intermittent fasting (7 to 8 hour eating window) about 10 years ago for a whole year based on studies showing it affects insulin and glucose levels as well as inflammation. I managed to lose 6 kilos but started regaining because I was gorging on food before each fast. I switched to a longer eating window and was no longer so ravenous. Possibly doing low carb also helped there. I have maintained on average my weight since then to make my oncologist happy. On the whole my blood tests over the years have shown very low glucose, insulin and inflammation levels. This is of course also thanks to a relatively high volume and intensity of exercise which I've been doing daily since I started treatment.
I must say I tried a lot of other things, just trying anything that might work and not hurt. I did metformin for 1 month but didn't like it, tried aspirin for a while as well as tons of fruit and veggies (for anti-inflammatory salicylates), including broccoli sprouts (for sulforaphane). The latter was for a whole summer (my thyroid did not like that). I tried melatonin but wasn't sure it really improved my sleep quality, OTH it may have had some antitumor and antiestrogenic action. I still take antihistamines for seasonal allergies and hope these are blocking any histamine pathways cancer might think of using. I was very deficient in Vitamin D but finally got it up to normal levels through supplementation after several years. Music helped me, in particular music to dance to and sing karaoke with. Steam baths and massages were also balm for the soul but may have had immune system effects as well. All of this however was after I had already reached NED. They may have helped keep me recurrence-free, each alone or in combination.
Going forward I might try eating mushrooms more often.
Cancer: Could consuming mushrooms reduce the risk? (medicalnewstoday.com)
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Heidihill, wow you've been stage IV for a long time and NED on top of that. Congrats!
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Discussing complementary treatment is not prohibited here although it's true lots of it is not backed with enough scientific evidence to say it definitely helps in controlling disease.
That said, there are some complementary things that do seem to help and/or make us FEEL better, keep side effects at bay and keep us strong enough to continue weathering treatment. Anything that we can do to keep general health good is going to be helpful - healthy diet, exercise, sleep and keeping any metabolic issues under control as Heidi described.
I credit my NED status mainly to the conventional treatment I'm receiving. ( and the luck of the draw that my cancer responds well to it). However, I do like to do what I can in terms of complementary treatment to feel better and possibly aid in my treatment.
Exercise is one thing that even conventional medicine embraces and recommends not just for prevention but for already diagnosed people.
There are trials going on now to see if losing weight and regular exercise helps prevent recurrence in early breast cancer. Unfortunately they aren't studying this for mets patients yet, but as we are living longer, they probably should.
I did do fasting and intermittent fasting during chemo. I had read about Valter Longos research and the “fast mimicking" diet he came up with and he does advocate it for cancer patients to improve response to chemo.
I also take melatonin, Claritin, magnesium, aspirin, berberine, extra Vitamin D with K1 and a weak B complex. These things help alleviate side effects and “possibly" do block pathways as Heidi said. The B vits are for hair and nails mainly but I'm careful not to take mega doses of any vitamin anymore and I avoid multi vitamins for that reason. I take calcium and D3 recommended by the oncologist for bone mets.
I avoid soy and anything else I think might increase estrogen. I don't get obsessive about what might pass my lips but if I can choose soy-free foods at the grocery store, I do that.
I was exercising very regularly before COVID but I slacked off badly and just now trying to get back on track. I walked a total of five miles yesterday in 20 minute intervals and it feels great. I really need to keep it going.
I always liked natural remedies and using supplements but now I am careful not to take things that might interfere with conventional treatment.
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GoKale4320 - I don't know that the topic is taboo, I think there are just a lot of unknowns. I think a lot of us are hesitant to recommend anything that might not be proven. There are so many false hopes pitched out in the internet world that I think, at least I am, cautious to do that to anyone because disappointment can be so damaging. I can tell you that I lean on the side of evidence with anything I try. I credit my newer NED status to my treatment of Verzenio and exemestane (Aromasin) primarily and my cancers response to it. The Verzenio has had a lot of good press recently in the journals. I also follow Dr. Michael Greger who wrote the book How Not to Die (a tongue in cheek title for sure) and publishes the nutritionfacts.org website. I basically looked for anything that would compliment my drug therapies and since I have a hormone positive cancer I wanted anything that would decrease my estrogen levels. I am not vegan by any means but did make a priority to cut back on meat and dairy and prioritize fruits and vegetables. I also researched specific things like cruciferous vegetables, mushrooms and soy that are known to have anti-cancer properties and looked for the actual science behind that. I am a devout Christian and my faith has brought me through this treatment even when prayers weren't answered the way I wanted them to be. Is it one thing or another or just pure luck? I can't honestly tell you. My only advice would be to look at the sources of the research you are doing and to find something that works for you. I was not about to do something as drastic as Gerson Therapy, I very strongly believe anything we do to fight this has to be something we can live with daily. Hugs to you and my prayers are that everyone on this blog can eventually join us in the NED crew.
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I had another question for the NED crew. Did your MOs keep you on the same regimen that you were on when your NED status was confirmed? I've been on Verzenio for a year and a half and on exemestane for about 6 months after switching from faslodex. I'd love to get rid of the exemestane at some point but am curious if the treatment strategy is typically to hold course unless something changes.
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Hi emac877, that’s a good question and one that me and my MO are grappling with. I believe that generally, the strategy is keep with the treatment that’s working until either there is progression or until side effects become intolerable. However, with longer periods of NEAD resulting from some of the newer drugs the long term toxicities are not yet fully understood and of course they are frightfully expensive so how long will insurance cover them?
My situation is that after years on and off various treatments including Taxol, Abraxane, Herceptin, Perjeta and Kadcyla, I’m on a combo of Herceptin and Keytruda that has kept me at NEAD for nearly two years. While many people who receive immunotherapy are taken off fairly soon due either to side-effects (which can be severe) or ineffectiveness. It seems there aren’t too many like me who have tolerated the drug reasonably well for two years and had a great response. I don’t want to wait until I too have a terrible side effect but hate to stop something that’s working. If we stop will the cancer come raging back? And if it does will the same drugs work again? Who knows?! So, we are trying to decide what to do and how long to keep going. I don’t have an answer to your question but I’m grappling with a similar situation. So hard to know what to do… I hope others will weigh in.
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emac877 - I'm on Herceptin, Perjeta (anti-HER2) and anastrozole (anti estrogen therapy). A couple of months after I started anastrozole I asked how long I would have to stay on it because I didn't like the side effects. The answer was “forever".
The idea in stage 4 is that it's the meds that keep the cancer under control, and if they're working, we don't change anything unless the toxicity of the treatment becomes really serious. NED does not mean “cured.”Even for early stagers, standard of care is to stay on anti-estrogen therapy for five to ten years.
Also, I'm gonna put on my armchair oncologist hat and say I think drugs like Verzenio work only in tandem with anti estrogen therapy? I don't think Verzenio alone is an option but I'm not 100% sure
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Emac877 - I was diagnosed as Stage IIB in 2010 and a recurrence as Stage 4 diagnosed September 2019. I have been NEAD since July 2020. I just saw my MO last week and he said that we can now drop my scans to every 6 months since I was doing so well so that we can reduce the exposure we get with scans. I did not ask him if I would be able to increase the time between scans more if I can stay at NEAD. I have asked him before if I will be able to drop any of my meds at some point and he told me that as long as they are still working, the meds will stay the same. I am on Faslodex, XGEVA and Ibrance.
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hi MargaritaMS i am currently on ketyruda too. however, i am er+ pr- and her2- i have lynch syndrome, which caused my tumor to have MSI (microsatellite instability and MMR mismatch repair). i have been on keytruda for 21 months and my PET scan has been NEAD starting 5 months after i started the keytruda. My MO says she will continue the keytruda for now. she says there are currently no guidelines for how long to stay on the keytruda when given for MSI/MMR. i actually did develop arthritis from the keytruda and am on prednisone right now. i have been unable to get off the prednisone, i've tried several times and the joint pain comes back everytime i get off the prednisone. i am only on 6 mg daily of prednisone right now. the recommendation is not to take more than 10 mg a day of prednisone when on keytruda. letrazole and ibrance did not work for me and i was quite upset, because so many women on these boards do well for years on that combo. so i would hate to get off of keytruda and then the cancer returns.. i'm not sure how well the keytruda will work then. and i feel like the letrazole/ibrance combination didnt work well for me.
olma61, i agree with what you said re stage 4 cancer and the need to stay on some treatment forever. and yes, i believe verzenio and the other meds in that family are meant to be taken with anti estrogen therapy
my next PET scan is next tuesday. i am of course very concerned, but my TM's are normal right now, so i'm hoping that's a good sign...
i'll let you all know results of scan.
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ts542001, thanks for your response. it's really interesting to find someone else in a similar situation re: Keytruda. I'm so glad to hear that you've had such a nice response to it but the arthritis is a bummer. Can I ask you, did your side effects start right away or have they gotten worse over time? I've been really fortunate so far that I'm tolerating Keytruda pretty well but my MO said the same, there just isn't clear guidance on how long to stay on Keytruda. She also said that the really serious side effects (ie: the life threatening kind) tend to happen very early on as opposed to after several months or even year on the drug... well, but there just aren't very many people on it for such long time yet so that isn't necessarily super comforting. Could we PM? I'd like to keep in touch and share info as we head down similar paths.
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ts542001, good luck with that next scan definitely let us know how it goes.
everyone else, good luck with our continuing treatment and it’s good to see keytruda working well for some of us
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Thank you all. I see my MO on the 29th and I have a feeling that she will say that we need to keep the current regimen to keep things stable. I am just doing my ground research to see if there are options that may make the symptoms more tolerable. I hate the hair loss but my biggest struggle is the joint pain and fatigue. I swim and that helps but when I'm not in the water I move like a robot with the motivation of a stone. I don't want to do anything that would risk a progression from NEAD it's just such a hard balance between livable side effects and benefits. It does help to have insight from others who have been through this. Thanks.
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