Stage IV NED crew : lets support each other
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This is the article I was thinking of, probably not quite relevant but interesting.
https://coloradocancerblogs.org/the-sneaky-way-est...:+ColoradoCancerBlogs+(Colorado+Cancer+Blogs)
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LA212
I’ve had a mastectomy , but that was after I had a complete response to chemo. They kept telling me they weren’t going to do it because at stage four it wouldn’t do much survival wise. But once the cancer was “gone” they were like “hmmm maybe you’re gonna survive this after all” and started treating me aggressively and curatively. I know it’s not the case for most. But keep in mind , some women were diagnosed at an earlier stage and relapsed (and probably had a mastectomy prior to stage four doagnos. Some have lumpectomies ).
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Dear AllyBee, thank you for your answer. Hard to prove but hormones might be doing something even for TNBC and HER2 enriched types, and the article just shows that... My wife's heat-waves have subsided (basically gone in past month), so we visited one of the best onco-gynecologist, who said that menses are still not there but maybe there are a few signs they might show up. She also said that natural and slow (how it should be) coming back of ER and PR is not a bad thing from her experience, and not always influence even ER+/PR+ cancers, so technically ER-/PR- people should do okay. Do you guys know some natural ER/PR blockers, have you tried any? I read a lot about grape-seeds and they seem to be a good aromatase inhibitor but it is also a powerful antioxidant, so I don't know... Saulius
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I love reading your good news stories. I’m still with you but don’t visit the site much anymore. Congratulations to everyone who had good news recently.
Saulius, I can’t really help you except saying that chemo and tamoxifen have kept me post menopausal for 3.5 years and NEAD but I am highly ER/PR +ve.
LAL 212, I had a double mastectomy for a tiny, 0.8mm lobular cancer in 2008, BUT it followed a failed lumpectomy as the margins were not clear, biopsies picking up LCIS. I waited three months after the lumpectomy for the big op, my theory is that as the surgery spliced through the LCIS it spread like a Dandelion through my body as the 0.8mm tumour had no vascular or nodal involvement. If only I knew then that I would still go on to be diagnosedStage 4 I would not have had such a major operation.
Happy New Year to everyone, let it be good and kind to us all xxx
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Saulius - I was pre menopause when diagnosed - 44 years old - and ER/PR/HER2+ = all three. I was completely in menopause after chemo.... my chemo regimen was very intense - I had mets in liver and everywhere in bones. I have been NED for 6 years. I initially took AI's, and tried several of them, but had very bad side effects, so my oncologist recommended stopping them.... I still get Herceptin regularly. I did have some menopausal symptoms after chemo - hot flashes, etc... but they didn't last long. What is very interesting is that lately I have felt like I am going through it again. I am 52....so I think about the age it would have happened naturally. (?) Anyway, I have been having hot flashes again! I haven't had a chance to talk to my oncologist about it but am going to in January. I don't know if this helps you at all - feel free to DM me if you have other questions. Your wife is a lot younger than I was.
Happy New Year to everyone, and hoping that we all remain NED in 2020.
XO
Andrea
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Hi all. So happy to read all the good news stories. Congratulations!
I haven't been on since late November. My last CT in early December reported "something new" in my liver and recommended a MRI. Had the MRI a couple weeks ago. The dr. who read that scan reported he went back through my previous scans and saw reference to it in 9/2018. He concluded it was a hemangioma, but said a PET would be definitive or continue following with CT. I've spent the last week and half trying to get the PET scheduled with order miscommunication from my MO's office; frustrating! Anyway, I'll finally have the PET Jan. 8. Fingers crossed, I'm still NED.
LA212, don't know what the percentage is overall for mastectomy & NED, but I had a left mastectomy and glad I did. I was dx Stage IV de novo, but my oncologist wanted to treat with curative intent since I had only two small bone mets. Can't say for sure if it made a difference, but I like to think it did. I am now 4.5 yrs. from dx.
Happy New Year to all and best wishes for continued NED status in 2020!
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Good to hear from you Bliss...I see you’ve posted on another thread too. Hope the PET on the 8th goes well.
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Dear Vevs, dear Andi, thank you for you inputs, I will definitely write you in person when I have some questions. In theory it was very probable that these 12 and then later another 6 rounds of Docetaxel had to bring her into permanent menopause but human body is amazing... At least we know now that NED is durable in the liver for 20 months, and post-mastectomy area for 6 months. Let's hope it continues for a long long time with or without hotflashes. Happy New 2020!
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Just going along here - I am now only taking aromasin. My doctor took me off zometa and apparently I no longer need my shot to keep me in menopause - at 55 I guess I'm there
They have also pushed my visits out to every four months, so 2020 has started off wonderfully! I wish you all a successful New Year. 0 -
"Follow-up" chest and abdominal scans tomorrow. Bone scan next week.
I've been off cancer treatment for well over a year, getting blood draws and check ups every three months. So far, so good.
Cross your fingers and toes for me. Thanks!
Tina
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Tina, I hope it goes well for you! It's so good to see one of "us" possibly escaping medication for good!
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Dear Tina... just... wow...
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Crossing my whole body for you, Tina!!
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Thanks, all. Now check out the last item on my barium label. My first reaction: HUH?
My second: Things could get messy.
My third: Why are providers of medical services such lousy communicators?
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Ha ha ha, Tina. That is great. I've never had that instruction on barium, but will start to look for it now. WTH?
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I had a nuclear bone scan and CT scan this week to check for any tumor progression. Nothing there! No cancer seen anywhere. The MO even mentioned for the first time ever that we just may have hit it with the silver hammer. I feel really good. I have added some supplements, am exercising and attempting to eat a healthy diet. I believe in moderation. To me that means do good things and have fun, but seek balance. The MO said I could have a chemo vacay until the next set of scans. I have been on Abraxane for a year now and feel a break is warranted. 2019 was a crazy year. Here’s to hoping 2020 is better
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Congrats to you JCS! That’s fantastic news!!
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Good luck on results Tina...both you and JCS are inspiring the rest of us.
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Great news JSC! Hope all went well for you, Tina! Keep us posted.
My update. Not sure if I'm NED anymore. So, I have gotten some confusing scan results even after the PET! CT report two wks ago said new spots in liver - likely progression - not conclusive, recommend MRI. MRI report said "seen in 9/2018 CT report - likely hemangioma;" not conclusive, recommend PET for definitive answer. PET report said liver lit up with greatest SUV in four areas, but nothing shows on the accompanying CT. MO called last night after talking with radiologist who said something's lighting up, but there's no mass, so can't biopsy! MO wants to be proactive and restart me on Herceptin and Letrozole, and add Tykerb, assuming I'm still Triple+, just in case it's very early cancer cells that have not yet formed a mass. Then we'll rescan with PET in 6-8 wks., so we're not clear whether I've actually progressed or not! Big sigh.
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Bliss, yikes--what a confusing bummer for you and your doc. Don't you wish things were more black and white?
Speaking of which, I obtained the radiologist's report at my CT appointment yesterday. (This was a first. I think it's because he had to help the radiologist with the contrast injection, and we had lots of time to chat as they poked and probed and finally found a tiny vein in my wrist and used a tiny needle, which of course took forever to work.) My lung mets which have been sitting dormant appear to be increasing in size. He had mentioned this last June in his report and is now suggesting a PET, which I haven't had in years. I'll get my bone scan done next week as planned, then make an appointment with my oncologist and discuss what to do.
Tina
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hi Bliss and Tina,
Just home from work and reading both your posts.
Man this stuff is relentless. When they say MBC is a marathon not a sprint, they weren’t kidding.
Bliss I am in a similar situation as you...grrr. I wish we had clearer answers. I am awaiting a Petscan after my mri and bone scan show a lot of bone progression but CT does not. Hoping pet will clear up the mystery - but could add more confusion. I am awaiting approval by insurance from pet that is taking a long time now. I can keep my mind off these things but it eventually returns to it all.
Tina - oh boy, how you doing friend? Not the news anyone wants to hear. Please keep us posted of what happens. You’ve been going strong for a long time now, I’ll send positive thoughts out into the universe that you are taken care of as best as possible.
Lots of love,
Philly
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Awww Bliss, Philly and Tina this being in limbo is pretty awful. I hope you can let us all know how things go? Sort of there myself too as today I think I found another lymph node lump in my neck, but it’s barely there, so I might be wrong.... we’ll see. This is frightening and exasperating for us. All we can do is share and empathise....
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Thank you, Philly and Karen. It's good to know you're out there. Crazy stuff, this.
Tina
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sorry to hear about your results ladies, Bliss, Hope you don't mind a question - you said restart herceptin, had you discontinued herceptin with bone mets
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Thanks Tina, Philly and Karen for helping make this MBC rollercoaster ride a much better one. All my fingers & toes crossed for better news for all of you.
Olma, thanks. Yes I stopped Herceptin in July 2016 with bone mets. On that point, the PET scan report was conclusive for no activity in the bone.
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Sorry to hear so many with bad news on scans. Cancer is relentless.
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Okay, here's my update. As I mentioned previously, my recent chest CT indicates my lug mets are awake and growing. My recent bone scan showed no mets, but lots of arthritis in my shoulders, knees and feet plus more degenerative disease in my spine and--oh, yes--uptake in my left hip that indicates my prosthesis (installed just six years ago) may be "loosening." Oh, joy!
I see my oncologist on Thursday for the first time since October. I imagine he will follow the radiologist's suggestion and order a PET of my chest. Anyone want to guess what treatment I'll be on next? Seriously, give me your thoughts.
Tina
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Ugh as well on all the bad news.
Tina, hard to say what comes next as can't see what you've had other than Faslodex. Maybe an AI with Ibrance? These days it's usually a combination, even for first line treatment. Maybe they will wait for the PET results to decide. Just a wild guess. Maybe they will do a biopsy to see if anything has changed. That could be the deciding factor for the next treatment. But maybe they'll start you up on Faslodex again, since technically it didn't fail, and wait for what happens. Whatever the case, wishing you and others the best!
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Update: Saw my oncologist yesterday for a check-in and to discuss the results of my scans. He greeted me with "We do great work together," which was a surprise, considering my assumption that I'd have to go back on treatment. He does enjoy knocking me off my pins, especially when I've been "researching" things medical and make the mistake of letting him know. When will I learn?
Here's the upshot: he thinks the apparent slight growth in my lung mets is a visual effect of the CT "slicing" process and is insignificant . We discussed my going back on Faslodex because I had done so well on it for so long. When my partner and I questioned adding another med to the mix, he said that they all have SEs and that we're going for quality of life. (He knows that the arthritis is worsening, so that may be part of his reason.)
I told him I was going to see an orthopedist to check on the condition of my hip, confidently telling him I had researched the matter and knew it would be rare if mets were at the site. He replied, "It's not rare, but it is uncommon" and told me that mets sometimes go to an injured site. (So much for Ms. Smarty Pants.) He told me to hold off on going to an orthopedist and ordered a PET-CT, my first in years, at the end of February.
Truth be told, I have the feeling he ordered the PET as much to reassure me as to check into the situation further. I've been with this doctor on and off for decades. Did I luck out or what?
Tina
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Dear Tina, you are very lucky with your oncologist, and you two sure "do great work together"! I am very sorry you have to go through all of this again but knowing your record... who could doubt you will beat it this time too?! Hugs to everyone on this very inspiring thread, Saulius
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