Stage IV NED crew : lets support each other
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It's my birthday! 6 years NED today!!
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That is so inspiring. Congratulations!
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Lulubee, my oncologist has referred to my current status as "remission."
Cafelvr, time to celebrate!
Tina
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What a fantastic birthday to celebrate Cafelover aka LInda! Congratulations!
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I will celebrate your birthday with a latte, Cafelvr! Congrats on 6 years!
lulubee, me too, have been described as in complete remission.
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Congrats Cafelover! What a great milestone! Many more for you to come! Ann
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Congratulations on 6 years, Cafelovr!
Regarding the above discussion of terminology, my onc used the term "remission" when she first described our treatment goal. She said, "We will try to put this into remission with taxol, and then put you on an aromatase inhibitor." Which is what happened. The words on my PET-CT report were "complete metabolic response". She described the shapes of tumors that still showed on CT as "dead or dying". She has never said NED to me, but I spied it on some of her notes one day. For some reason I think of the word "remission" as an older term, and my onc has been an onc for a long time. She is at a major cancer center. We really don't talk about the terms, I think because she knows that I understand the situation.
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Congratulations Cafelovr! You are an inspiration and you give me hope as I am also on Herceptin, and it's been working well for over three years now. Hoping I can follow in your footsteps, and hope you are celebrating!
XO
Andi
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Hi everyone who has joined this thread or just reads it, I have deliberately not been writing for a while as my position seems to be in flux, and to be honest I think that my onc is baffled about what may or may not be going on in me. Since last December I have had a full body PET scan, a CT scan and three MRI scans and another due in a few weeks. All scans have shown up nothing at all. Yet despite this reassurance, my CA15-3 has been rising slowly, from a low base of 22 in March 2015 to 115 in April 2016. My last blood test was yesterday so I am waiting for the call with the results, but I am resigned to it creeping up again. The rate of increase has gone from one point a week to about four points a week over the last year. So my onc thinks that there is something slowly brewing, but he just cant't find it! He is as frustrated as I am. My next MRI is to be some sort of super forensic special scan. If that draws a blank then he is thinking of booking me in for a laparoscopy for my liver surgeon to have a rummage around inside me to see if that can pick anything up. Ugh.
So my position is - I would to all extents and purpose class myself as NED as of right now, but with creeping CA15-3. It is confusing and a weird place to be. I am working hard at trying to not obsess about this and to enjoy my time now with my daughter and working in the garden and with my dog before the Onc and his MDT team decide what to do with me. They are reluctant to treat until they know what we are dealing with. But if the markers continue to slowly creep up they may well make that decision. Sigh. I so wanted to stay NED since my liver resection in August 2014 put me into remission. My onc says I must be resistant to the hormonal treatments, which given that all my biopsies have been 100% ER+ is really annoying. I have blown through Arimidex, Aromasin, letrazole. I am currently on Tamoxifen but that obviously isn't working either as the marker rate has increased per week while taking it since December. Boo. I think he is wondering about a chemo like Halaven, or the Aromaisin / Affinitor treatments for me if they do find something, or if the markers keep going north.
Talk about being stuck between a rock and a hard place. I would love the call today to say my markers have gone down, but somehow I am braced for the opposite. This is my dilemma. So do I want them to find something so that I can go into treatment sooner? Or do I hope for scans to continue to show clear even though the CA13-3 is not behaving? Do I want treatment with nothing visible or wait till something visible crops up? But what if that something is in a place that cannot be operated on or does not respond to chemo? I don't have a great chemo response so far, the taxanes were not that effective for me. Eek. it is a difficult position. My head keeps going round in circles.
I so love this thread, when I started it I was optimistic and hoping for a long run as NED. If I fall off the NED perch, I do hope that you all won't mind if I continue to drop by. Maybe I should edit the OP to say that all Nedsters (I think that I just invented a new word there!) can continue to be part of this group if we stop being NED? Any thoughts? These friendships on line are so important to me and I hope to us all.
Love Boo (fingers crossed)
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I think we are all in this together-good, bad, ugly. Any of us could fall off the porch and I would hate to think that would determine my friends. I vote for permanent membership. There are people that have fallen off the porch and then walked right back onto it. Boo-I'm with you even though I don't come on here much.
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Boo, definitely stay on this thread with us no matter what, as long as you feel it is a good for you. I say you are still NED because you have no clinical or imaging evidence of disease. Even so, I would also be worried about rising TMs. Oh wait, I am worried about rising TMs. More on that in a minute. You have been on all three aromatase inhibitors and tamoxifen. But you don't mention faslodex. My research says that faslodex may work even when these others have failed. It works differently. Has your onc mentioned it? If you try it and the TMs go back down, then you're good, right?
My situation has some similarities to yours. The last PET-CT showed two liver areas that looked a little more active than the rest, but it is too subtle to call. At the same time, my CA 27-29, while still in normal range, has gone from teens to twenties. And I have been having occasional mild pains. Adding this all up, it is worrisome to both my onc and myself, but she says it is not enough to change treatments. Your story makes me think of asking my onc if any other imaging might help clarify. One thing she did was order a different TM, and it was normal. I feel that something may be brewing, but perhaps my body and my treatment will quash it. Remember when I said I was afraid that too many sweets and not enough exercise around December might make NED leave? Well, I'm back on the exercise and off the chocolate. (Mostly.) My current treatment, Ibrance + letrozole, has a 20-month average effectiveness time. I want my 20 months! I really thought I would get a lot more, starting on it from NEAD.
What is the normal CA 15-3 range on your test? I wonder if it ever happens that a particular TM, that has been reliable, just starts to be reliable no longer. Also, could these smallish rises be due to the body's delayed cleanup of dead cancer? Onc says that inflammation could cause the suspicious PET result. I suppose inflammation could affect the TMs also? What would cause the inflammation? I will ask her.
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In general I think all threads in the Stage IV forum should be open to all of us metsers. So I would say please continue to drop by Boo and anyone else, NED or not, who has questions or can contribute to the NED topic or just wants to say hello. We are all in this together (thanks, screech!).
Yes, other factors can make TMs rise but I forget what they are already. Please post your onc's reply, Shetland. I am still exercising and still eating chocolate, which is the reason I exercise. Hehe.
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Thanks Screech, Shetland, Heidi. :-) And the plot thickens...my markers went down 11 points! To 104! No idea why but I'll take a decrease any day. My onc is still sending me for the scan, he says he wants to double check against previous scans, and no idea why things are jumping about. So I am holding my breath. But secretly hoping that my markers decide to start taking a year to drop down to 22 again, following the year creeping up. This disease messes with my head. The onc has mentioned Faslodex but seems to be leaning to the AA combo if he decides to treat me. Which I hope so much won't have to happen yet awhile.
Joining Shetland and Heidi on the more exercise / no chocolate eating plan! I might start a record of how many calories I could have eaten but haven't, instead of recording how many calories I have eaten. An alternative approach to monitoring my food intake! I wonder how long it will take me to record not eating 10,000 calories? 20,000? 30,000? Anyone got any idea if this could work? Say if I set myself a target of not eating 2,000 calories a week, would I loose weight? (And i do realise this actually means not eating food that I otherwise really would have been planning to eat!. Is this a silly idea? Just occurred to me now as I sit here tying with my small bowl of muesli and blueberries. Could have had another scoop of muesli but I didn't, so that is at least 70 calories I have not eaten this breakfast...)
Boo (fingers still crossed)
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So I asked my onc what could cause inflammation that would make a PET scan appear suspicious, and she said there were many things. For example, there could be benign tumors or infection. I also asked whether TMs that have been reliable for a particular person sometimes stop being reliable. She said no, they should remain accurate. She did not offer an alternative explanation for rising markers. That isn't such good news right now because my TMs have now gone from teens to twenties to thirties. The number is just a couple points from being out of normal range. We'll see what the June scan shows. She says that if something is brewing, it seems to be slow.
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Slow is good, shetlandpony! It might even decide to reverse direction. Now I recall that dying cancer cells can also cause tms to rise. You may want to focus on fighting any inflammation in your body with an anti-inflammatory diet. I did look into Dr. Weil's tips and incorporated a number of them in my diet. Olive oil, more fruits and veggies, mushrooms, fish, chocolate, ginger and turmeric. For a while I was taking low-dose aspirin or ibuprofen to relieve exercise and treatment related aches and pains.
Boo, I just started logging my food calories and find it helps me to keep within a calorie deficit goal. You can use this calculator to find out how many calories you need to maintain weight. With a 500 calorie deficit you will lose weight faster than with a 200 calorie deficit.
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Thanks, Heidi. I have a feeling that something is brewing, but that it is possible my body and my drugs may subdue it. I feel like it could go either way. My anti-cancer lifestyle/diet is pretty good, but I am looking to make it even better. Interesting you mention Dr. Weil, as I am currently reading Integrative Oncology, edited by Weil and Abrams.
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so nice to see ned!! How does someone get there, is it luck! Are u ladies eating raw veggies, what is ur secret?
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Secret? Wish I knew one. I am almost at my five year mark and have been NED since my initial tx. I do nothing special. My diet is good, but not compulsive. If I want something "bad" I eat it, just not everyday. I drink when I want and exercise with my class during daily PE. I love being a teacher and I am close with my dd's and have two beautiful grandchildren. Ditched the toxic husband well before cancer.Mostly, I am happy because I do what gives me pleasure and avoid any practices that are overly strict and compulsive. My bc, even my bone met, is a very lazy grade 1. Beyond that? Just dumb luck, I imagine.
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I had stage 4 dx out of the gate in DEC/ 13/ I did not ever think I would meet NED. Fortunately one month ago I was declared in remission. What a fun month it has been. My oncologist only has me on q 3 week Herceptin. I want some of the taxol that put me here. She is worried about my bone marrow and not bringing resistance to the rest of the taxanes. In any case, I am appreciative of each person's reports from cancer land and I learn more on this site than from any doctor. While I do not like having cancer, I have found many wonderful benefits including brining my family and kids "close together". Carolyn from Music City
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Absolutely fantastic news, Carolyn!! Shetland, I'll have to download that book.
Lvinaz, I can't answer for getting there. It was likely the genetics of my response to treatment and the logistical edge of oligometastasis (like nuking an anthill). I do believe, however, that once we are NED, it's our big chance to change cancer's playing field through lifestyle changes. It doesn't hurt to try as I figure it helps ameliorate the effects of aging and treatment anyway. So I sleep more, eat less overall but more fruits and veggies (including raw), drink more water, less alcohol, move, move and move more (but then get enough rest).
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Carolyn-yahooooo!!!! I could not be happier for you. Now let's keep this rolling!
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Carolyn, WONDERFUL NEWS!!!!
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I don't know what the "secret" it. I just had a very aggressive oncologist who was stronger than my cancer. I've had a "complete pathological response" to Herceptin/Zometa/Tamoxifen, and the chemos I did prior (AC/Taxol). Lots of prayers, lots of volunteering as a mentor and fundraising for local women's charities.
I eat what I want, I drink what I want. I don't smoke or use drugs, I live my life to the fullest and have fun. I work full time, I'm a full-time college student, I travel. I don't cry, but when I do, I open the flood gates, pour my heart out, and pull up my big girl pants and move on.
I still think in the back of my brain that they switched my labs with someone else's. Never did I have pain from cancer, just the treatments. Dr. M said I was the poster child for Herceptin (still my 1st line of treatment) and that I'll watch my grandkids grow up. My daughter's only 13, so I have time before that happens. I used to wait for the other shoe to drop. I quit waiting...if it happens, I'll be ready.
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It has been awhile since I have been on the boards recap found lump at end of 07 at first it was thought to be a hematoma it wasn't so my new year began with if we don't start chemo now you will not make to your 30th birthday which was in 6 months. I was dx with TNBC with mets to liver, lungs and lymph nodes. I was told there was no standard protocol for them to follow since a 29 yr wasn't suppose to be Stage IV and that they would make it up as the went along and hey were going to be aggressive. The first treatment plan was tossed cause I had a severe reaction to Taxol, since I was Brac 1+ the insurance approved Abraxane. Abraxane was working it beat all the cancer back except one spot on liver which was size of quarter, then I was switched to AC/Red devil and was scheduled for a cyberknife following it to get that spot, ,well after finishing the Red Devil we were once again at the end of the year.
However this new year was alot better than the last, my scan had come back NED, the cyberknfe was cancelled and my BMX was scheduled. Following that I had radiation followed by another round of Abraxane, during this time all scans were coming back NED. Oct 2009 I was told that they were giving me a break from chemo and that it would be short lived. It is 2016 and I am still NED and not taking treatment for my cancer, 7 years of NED, 6 years with no chemo.
However shortly after my immune system came back online another genetic gene went supernova, June 2010 they figured out it was autoimmune, I was dx with Sjogren's syndrome. It has been kicking my but every sense they think it is somehow keeping the cancer in check but who knows. I am on an older chemo drug Methotrexate, it is given in way lower doses when treating Sjogren's then when it is used for cancer. I have to take 10 pills once a week to suppress my crap immune system to stop it from attacking my body. I also have another 11 meds I have to take not counting lotions and various over the counter items.
Right now waiting results from my blood work the doctors are concerned about the bruising and edema in my legs. Pretty sure my platelets are in the dumps again along with my WBC. Another thing they can't figure out.
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Welcome back hydeskate, good to hear form you again and especially good to hear that you continue NED! 7 years of NED really is amazing, I take my hat off to you and hope that things don't change ever for you. I'm sorry to hear the Sjogren's side of things though. I have heard that there can be a relationship between BC and Sjorgrens. I wonder if indeed the sjorgrens is knocking out the BC in your body? A tough way to live though, so I hope that treatment becomes gentler for you over time as new drugs are developed. Hang on in there. Let us know the results of your blood tests.
Boo
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Just came across this thread for NED. I have been NED since April 2015 after treatment with Taxotere, H & P. My Onc said I had a complete metabolic response resulting in no evidence of disease. Have a scan and echo in June so am getting some anxiety already. Am reading all the posts here and learning from everyone's experiences. Trying to learn about the tumor markers as my Onc said he does not put a lot of stock in them but he is ordering the Ca 15 and Ca 27-29 tests monthly. My TM's have risen a few points over the normal threshold so am getting nervous now. I take supplements that have been approved by my Onc, have cleaned up my eating habits and exercise every day which I was never consistent before about exercising. I get infusions every three weeks of H & P and daily Anastrozole. I appreciate reading everyone's posts and learn much from them.
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Great to hear from you, hydeskate! To still be NED is wonderful! I hope methotrexate can keep you going for many more years.
jcfree, as long as the tms are still in the normal range, I wouldn't worry too much. Hang in there.
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Hydeskate, that is simply amazing!
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Car2tenn, how wonderful to see you here and NED! Hydeskate, it sounds so complicated; I hope your docs can figure it all out for you. Hello and welcome, jcfree.
So can you all believe this: I was fifteen minutes late for my labs, so I had to reschedule my PET-CT scan! The lab made me wait a long time, and by the time I was ready for the radioactive glucose injection, it was too late. It had decayed enough that the tech wasn't sure I would get accurate scan results. I tried to tell them at the lab, but they just said wait your turn. Terrible one to miss because my TMs have gone from teens to 20s to 30s to 40s. The last one is out of normal range. And now I have to wait for another scan day!
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I have a little dilemma that I don't know how to take. I am NED now for 6+ years. I've just had some moles removed and biopsied. They've came back pre-cancerous. It's kind of freaking me out because the dermatologist when on and on about a link between BC and melanoma, and now my moles came back hinky, and I have such an advanced cancer. Has anyone heard of BC and melanoma or severe atypical cells?
Prayers appreciated as I try to walk myself away from the ledge!
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