Stage IV NED crew : lets support each other
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sandibeach. I'm not NEAD but after read your story I'm interested in how you got here.
You had liver mets, mets to lung arterioles the emergency AC. What did they do next? Any surgery or local treatment?
I was DX MBC in December 16 with numerous mets to liver chest and lung. TX I/F since January 17, y90 March and April. Jan 18 scan showed still active but mostly stable lung and chest mets. Next scan in May.
I've never dared to dream I might become NEAD. I'd love to know how you did it. 💞
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Hello Grannax2. I pulled out all my filed medical notes to make sure I gave you correct info. I have only had VQ, MRI, Bone and CT scans with contrast. My MO does not order PET scans.
It was the extreme shortness of breath that landed me in the ER Oct 7 2016. The widepread liver mets were accidently found on a CT contrast scan looking for a pulmonary embolism. No PE, but something similar..TES (tumor emboli syndrome). TES cannot be seen in Xray or CT- too small. Liver mets caused the TES.
Oct 2016 I was started on emergency chemo as in inpatient: Adriamycin 60 mg/m2 and Cytoxan 600 mg/m2. Since my liver was compromised, adriamycin dosing was reduced so I would not go into liver or organ failure. Ca 15:3 was 423. Had a total of 4 cycles.
Nov 2016 Stable, no evidence of new mets, subtle decrease in 3 dominant measurable lesions. VQ scan showed no more perfusion defects in both lungs. Ca 15:3 was 381.
Jan 2017 Stable. No evidence of new metastatic dz. Minimal decrease in multiple hepatic mets. Ibrance/Femara started. ca 15:3 was 92.
March and July 2017 Stable. Continued decrease in now 2 measurable liver mets. (MO suspected they were dead). Ca 15:3 dropped to 55.
Oct 2017, Jan and April 2018 NEAD. Evidence of TREATED liver mets with distortion of liver capsule. Dystrophic calcifications. No evidence of new dz. T12 healed. Ca 15:3 now 47.
I am enjoying NEAD while it lasts!!
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Sandibeach! So happy for you! Your body and iummune system didn't fail you! What an emotionally hard few years. Keep on keeping on you are doing something right. I started “mindfulness and cancer"a 9 week session for cancer patients offered at the cancer centre where I live. I want to do everything I can to stay NED! I have stuff to enjoy in this wonderful life!
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wow Sandybeach, amazing! Long may we all enjoy NEAD
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Sandibeach Thanks for your detailed account. I think it was a very wise choice to give you AC. It's a harsh chemo, I've had it too, but i bet it it gave you a quick start to get on top of those mets. Most MBC don't get the quick start meds, i didn't . But, I didnt have life threatening symptoms that took me to the ER.
Looks like our adventure started at about the same time. I have 25 years of B.C. and MBC history. Too much for me to type on profile, but this round of MBC started in Nov of 16.
Have you been tested for mutations/genomic testing? I got my results from Foundation one in January and found out I have ESR1, resistance to hormone therapy. That probably explains why i have not had as good of response to I/F as you have. I'll find out in May if I have to change TX. I'm really anxious about that because there are no targeted therapies for ERS1. 💞
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Grannax2, sorry about my long post- should have condensed it. Might still edit it.
My blood was tested for genetic mutations at the time of MBC dx, but none found. I was also BRCA neg. My MO wanted to hold off F1 tumor testing to see how I would respond. She thought that when I progress, she would biopsy the new tumor for genetics. The up side is there might be more genetic markers discovered in the meantime.
My MO and I also talked about IR if the one remaining measureable tumor wouldn't go away. She was leaning towards ablation. But it became a mute point.
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Congrats to all of you who've had awesome scan results!
I've been scanned every three months since dx in June 2015. Now every 6 mos. as of my last one in January, but I find it's kind of hard waiting for 6 mos. to arrive! Hoping for good CT scan in June, but in the meantime, I'm due for a bone scan in May.
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Hi All - just reporting in! I am still plucking along here. I just had my blood work done and the report is all good. I was last scanned in October and they say they probably won't do another unless my blood tests or something else causes concern. It's been a little over four years since diagnosis (what a way to kick off my 50th birthday!). My met was never confirmed other than the small spot that lit (sacrum area) was completely missing on the PET after finishing chemo so the assumption is it was cancer. Here's to many more years with all of you! XOXOXO
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I was NEAD for 3 + years. Scans began every 3 months and then went to every 6 months Currently have one met so changing up treatment and hopefully back to NEAD soon!
Be well
Nel
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Heigh ho Heigh ho, it’s off to rads I go, to save my life with cyberknife,heigh ho heigh ho heigh ho....
Hoping these sessions lead me to NEAD. I feel close.
Sunset
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Ah, Sunset, I love a good vintage Disney reference. Best of luck!
Tina
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Best of luck to Nel and Sunset! Great Disney-inspired rhyme, Sunset.
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Sunset, thanks for the laugh. Great lyrics and amazing attitude! When do you get rads?
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Shet, as soon as the rad ONC puts the plan together. Maybe next week.
Sunset
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I'm sorry to say I will have to say good bye to this thread...hopefully only for a little while....brain mets have reared their ugly head....I'm off to Mayo on Tuesday to see how to destroy the beasties in my brain. Hugs to you all...and may the NED continue forever.
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So sorry to hear this, Kris........hopefully we will see you back here soon. Goodluck with your appointment at Mayo.
Love n hugs. Chrissy
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Hi Kris,
Sending lots of love and support your way.
Liz
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As of this April I've been declared NED!
Having a CT scan in August because I had a painful ovarian cyst rupture back in April so they want to compare..not sure when my next PET is though..I see my MO Monday.
We live from scan to scan, always knowing that our lives can change at any moment, but for now I am going on vacation with my family next week as a person who is in remission, and that feels pretty darn good!
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Kris, very sorry to read this news. Hope all went well at Mayo, and I trust you'll be a regular back here in no time.
NeverForsaken, that is just awesome news. Congratulations, and yes, you celebrate with that vacation. Enjoy!
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Have a great vacation, Neverforsaken! Kris, do let us know how Mayo went. Abeautifulsunset, hope rads treated you well.
I started a lower dose of Tamox a few weeks ago and have been having withdrawal symptoms. I had a massage today to see if it helps. Who knew that Tamox had fooled my body into thinking it was getting estrogen?
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Heidihill,
What dose of tamoxifen are you on now? Why did you go on a lower dose? Are the SE’s worse for you on a lower dose???
I would love to halve my dose but certainly won’t be doing so if the SE’s are worse. I dip in and out, please excuse me if you have already answered this question previously
Elen
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Elen, I am on 5 mg now. It was lowered because I had endometrial thickening and bleeding on 10 mg. I am an ultra rapid metabolizer so lower doses work for me in terms of getting therapeutic doses of the metabolite endoxifen in my system (seen through blood testing). Tamoxifen can have estrogen-like effects, in the endometrium, for example. With a lower dose, it's like my body is being deprived of estrogen all over again -- hot flashes, aches and pains, tingling in my legs, mood swings. I don't expect it to last. My body will adjust at some point. I just hope the dose reduction is enough to counter the risk of endometrial cancer while still working against breast cancer.
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Just checking in to report my latest scans were all good, and celebrated 3 yrs. since dx June 1. Hugs to you all, and keep on truckin'.
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Bliss,
Congratulations on 3 years. I have 15 months under my belt since stage 4 dx. I scan again in August.
Had HP yesterday. Hopefully it is continuing to do a good job x
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Bliss, congratulations!
Heidihill, I also had a blood test to see how well I would metabolise Tamoxifen and it thankfully showed that I metabolised it very well. I’m wondering if that’s one if the reasons that I find the side effects so awful at times. Particularly joint pains and hot flashes.
I’m not really complaining as it seems to be working but I do wonder if I need 20mgs a day of it?
It’s my 2 year mbc anniversary this month and 10 years bc diagnosis anniversary as well. Long may we all remain NEAD
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Hi all!
I’m not NED yet but hope to be soon! I was diagnosed de novo stage 4 at age 33 3 weeks after delivering our daughter (mom of three). The met was to my femur (2cm) with a 2cm left breast primary and am ER PR positive. Ive got 12 weeks of taxol under my belt and the pet scan shows that the femur met is healing post sbrt and primary tumor has shrunk dramatically. I’ve got 4 rounds of AC then surgury, then radiation. Anywho.....I may wondering if anyone had followed the copper toned trial that just finished phase 2?! It’s out of Wiell Cornell run by Dr. Vahdat. TNBC is a big focus of the trial but also stage 4 NED of any subtype were included. It involves using a drug called “TM” (abbreviated) which is used to treat Wilson’s disease. It seems to perhaps also have the ability to prevent relapse in “high risk” patients with NED stage 3 and 4 breast cancer. A View HR positive women in my fb Group are on it off label And off trial. Has anyone else brought this up with their oncologist?
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That’s interesting I haven’t heard of this before. I showed it to my friend with bone mets and she raised the question if it would be available for us bone metsters as we will never be NED due to scarring but we can achieve NEAD? Any thoughts? Also my cancer is lobular and this doesn’t tend to show up on scans other than sclerotic bone lesions, Di they go in tumour markers I wonder in the absence of absolute proof?
It sounds like you’re hitting your BC hard and well deserve to be NED at the end, much love to you CFreexx
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That is interesting and hadn't heard it before, but thanks for the information.
Thanks all for the well wishes. Congrats on two years, Vevs, and fingers crossed for a great scan in August, Jackboo!
Here's to continued well-being for us all. Enjoying a sunny Sunday, hope you all are, too!
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NEAD is fine too. The idea is that there aren’t any established visable mets with a blood supply....just micromets. The TM depletes copper, which in turn, suppresses bone marrow “EPC” cells which are responsible for leading cancer cells to the “pre-metastatic niche” (organs/bone) and setting up the tumors blood supply. Dr. Vahdat likens it to a car with no gas (micromets STAY micromets). So far, according to Dr. Vahdat, after 2 years on TM at therapeutic levels (ceruloplasmin between 8-16), relapse is rare....even amoungst stage 4 NED. The 7 year progression free survival amoung stage 4 patients was 66 percent. Amoung patients , 41 percent of HR POS patients were able to copper deplete, I think her 2 was able to around 65 percent of the time, and TNBC was able to deplete 91 percent of the time. Being on PPI (antacid) was shown to increase the effectiveness of TM . It also has a very low side effect profile which includes sulfur burps, although in about 3% of patients it does cause some mild neutropenia. The two ladies I know that are currently on it off label had bone Mets before being NE
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If you look up “Dr Vahdat MIT” on you tube there is a video that is about 40ish minutes long about TM. The discussion of the trial is about 11 minutes and 10 seconds into the video so I recommend fast forwarding 😊!! Phase 3 is in the works. Because TM isn't FDA approved for MBC yet, insurance doesn't cover it. I've heard through the grapevine that the first month of therapy is a bit more pricey (because you have to take a loading dose of 180 mg but when your cP level is within range, usually within one cycle (4 weeks), they can cut you back to 100 mg. I've also heard it's about a 250 dollar monthly investment and you have to take it 4 times daily. So....financial risk of 250/mo, time committment in that you are taking it on a strict schedule, rotten egg burps (antacid can help), and having to monitor your CBC and ceruloplasmin levels every month or so.......If it could help me stay NED (assuming I ever get there)....I'm in! Hoping my onc. Is encouraging because she is all about clincal trials! ***note the progression free survival curve in the video even in stage 4 patients....it’s flat!*** they have extended the study three times and have stage 4 folks as far as 8 years out NED.
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