Stage IV NED crew : lets support each other
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LoveFromPhilly: you look better than FABULOUS! Before Taxol I had hair almost like yours. Right now, if I pull on my ears I look like Dobby The House Elf from Harry Potter. Congrats on being a winnner again! I haven't been on the Forum since late May. Good to see the same names - as Sesame Street says - "sharing and caring".
I have my fourth infusion of THP on Friday. I seem to be tolerating it very well. My 5 cm primary tumour in my breast has shrunk to the point where my MO can't find it!! I hope my liver mets are responding as well. I get another PET in July and a CT in August. At least that is the plan right now. I hope to be an official NEAD member soon.
ShetlandPony: keep on dancing I love to dance, to move my body.......
To all you other Ladies -- wishing you all that is good!
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Elderberry, good luck with your infusion on Friday. Wonderful news you're tolerating the THP well, and that your tumor has shrunk so much! I trust the liver mets are responding just as well; fingers crossed. Keep us posted.
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Can I just whisper... CT scan results Finally in. ‘ no evidence of disease whatsoever’ says my Onc. So relieved for the moment and will enjoy summer - now 10 cycles in.
Until the next scan.
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Delighted for you Karenfizedbo!
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Karenfizedbo15 - I'm jumping for joy on your behalf! Yes, do enjoy your summer, every single day of it! xo
(I'm hoping to join you soon - praying that one pesky spot got zapped to death with the rads I just finished.
)
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Congrats Karen! I hope to be joining the NED group soon.
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Karen, no you Shout that girl! So happy for you and congratulations! Now go enjoy summer.
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Thanks all... onwards to us all
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Karen, that’s fantastic. Now do enjoy your summer — which in Scotland is so nice and not too hot, as I remember.
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Karen, planning a visit to Scotland in Autumn. How’s this heatwave up there? I think I saw that temps were pretty high just now. Enjoy! ☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️☀️
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26 degrees! 🥵 Us hardy peely wally ( pale) Scots are usually Taps Aff when it hits 15! Where / when are you goingin autumn Jackboo?
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Karen: I am so happy with your news. I used to work at a travel immunization clinic. Clients would ask me if I travelled a lot or envious of people going to places like Thailand. I said "I like to go to places where you have to wear a sweater. Scotland always looks good to me" I love Scotland. I think I mentioned once my father was born in Braco, just outside of Stirling. I live in Vancouver. BC now. After we have had sunny, hot weather (smashing records at 25 Celsius) for more than two days we whine "When will this heat wave ever end? We need the rain"
jackboo: I think you'll find autumn in Scotland most agreeable.
Bliss58: Chemo yesterday. Feeling super fine today. Taxol gives me the rosy cheeks of a little English kid so I look sooo healthy. It also gives me a rash; a small patch above my eyebrows and I have a cream for that that works.
Cheers to all!!
Not NED yet -- but hoping. Just wanted to respond to posts. Does this make me a "lurker"? Sorry.
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Oh, you’re in big trouble now, Elderberry!
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Hi Elderberry! My daughter made me a Margarita last night. First time in almost 4 years that I have had tequila. I just wanted to have one and I hope my liver will forgive me.
My daughter bought top of the line Tequila and orange liquor and fresh squeezed limes. She said that if I was going to have Margarita, I deserved the best ingredients!
I am going to buy a 2 piece bathingsuit to add to my collection of newly purchased one piece bathingsuits. Apparently the 1940's look is returning..waist high bottoms and halter tops. Might look funny with my port and chopped and surgical altered boobs..but I don't care.
Beach here I come.
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whoop whoop Karen, great news! Have a great week everyone, may the sun shine and may we all be happy xxx
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Woohoo, Karen!
We are having a heatwave but am still enjoying it, although we cheated and went up to the mountains to cooldown.
https://www.sciencedaily.com/releases/2019/07/1907...
Low doses of radiation promote cancer-capable cells
This sucks in general but still gives hope that together with antioxidants, low dose radiation actually can help kill cancer cells!!
If this is true, this may have been the reason I got through 10 years of PET/CTs and x-rays without my cancer capable cells getting the upperhand. For most of that time I had 7-10 portions of fruit and veggies everyday and lots of fish right after every scan (for endogenous antioxidants) as well as tea and red wine.
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Hi Karen,
Scotland still in the planning stage yet. I’m lucky enough to have free train travel through my husband’s job and so lots of options! Any recommendations?
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Jackboo, autumn.. shrieks Perthshire, the colours are just amazing. You could come via Edinburgh on the train, which is cracking, but very touristy all year round now. Glasgow is where to come for shopping and def the people. West coast is for scenery and Loch Lomond for accessible mountains.
PM me if you’re looking for more detail
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So not sure if I should have asked this in a new thread, but I really wanted to target the NED crew mostly. So I just had my prophylactic oophorectomy on Friday and once I am recovered I will be put on Letrozole. I also have my 3 month scan Mid August. I have been talking to some people that are NED and are On an AI and either Ibrance or Kisquali, and others that are just on an AI. I was just wondering if anyone knew the reasoning behind this. As in why do some get both or just one. Why would one take an oral chemo if there is no active disease? Wouldn't we want to save those drugs for when we may possibly (hopefully never) need it? My team is going for curative, but it seems odd to me to be put on chemo indefintely.
I'm more curious than anything. My Dr hasn't mentioned a combo as of yet and I haven't been on any chemo since January, but I want to have info incase she brings it up. I just want to make an informed decision and feel like I'm doing the best I can for my future.
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BAP, I have been wondering the same thing, but never able to figure it out. Don't know why some women just do well with anti-estrogen only for many years? I asked my MO at Dana Farber if i will be ok without Ibrance for a while, he said he does not know for sure, so just recommend both AI's & Ibrance for me since studies from clinical trials proved that ibrance extend PFS compared to AI's alone. Good luck with your decision!!
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Thanks so much Karen I will definitely be in touch again when I have some dates fixed, but in the meantime what date roughly are the colours at their best please?
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BAP, when they work as intended, the targeted therapies such as Ibrance and Kisquali extend the time the hormonal therapy (aromatase inhibitor in this case) works. They do this by blocking a typical pathway the cancer uses to sneak around the hormonal therapy. You’re blocking two paths at once. With a slow, bone-only stage iv cancer, maybe just hormonal therapy would be all that is needed. But otherwise, I think most oncs would recommend the double whammy. These therapies target a particular pathway, rather than kill fast-growing cells indiscriminately as chemo does. But they do have their own side effects and mpressive yellow warnings on the packaging!
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BAP. I am NEAD (no evidence of active disease). My MO prefers using this term as being a Stage IV person, you will always have disease.
You must be oligo if your team is going for curative.
I was put on both Letrozole and Ibrance right after AC for my extensive liver mets. My MO said the data showed longer PFS (progression free survival) with the addition of Ibrance, so she wanted me on both right from the start.
Edited to say that my liver MRI yesterday showed just a few scattered liver cysts and my stupid benign 5 cm hemangioma..nothing else. Happy. So happy.
S
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BAP, in my case I was only on an AI because neither Ibrance nor Kisqali were on the market yet.
Sandibeach, so happy for you! You've had double whammy chemo and double whammy "maintenance". May you have a long dance with NED.
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Shetland-Thanks so much for the reply. That really helps to explain the mechanism and the why. My MO hasn't mentioned this route yet, but after chemo I was put straight on Tamoxifen, then did rads, and recently had an oophorectomy. So I'm not sure of what the current plan is besides the AI. I see her In 4 weeks so I'll find out then. Even if she proposed this method I'd only be able to access it through some miracle. Ibrance is super expensive and while I have an 80% coverage on my drug plan, my policy doesn't allow for direct billing for drugs which means I'd have to pay for the entire script upfront. I don't have the money laying around. I can't even afford the co pay. So I'm hoping that if this is the best route to go, that I'll be able to access it somehow through a program.
SandiBeach- I am Oligo. I had one 5 mm met to my liver which is totally gone after 4 of my 6 rounds of chemo. They went from palliative intent to curative and as far as I know, I'm still NED (next scan mid August) Congrats on your scans! That is amazing news!!! Woohoo!
Heidihill- Makes sense. I'm guessing there is no intent on switching the regimen unless something new pops up?
I guess I'm nervous about cost, and side effects/QOL. Husband works away 3 weeks at a time and I have a 4 year old to look after. I also work with the public so I get nervous about the neutropenia that can come with it. I've been enjoying this time off treatment and I just want to be functional. Perhaps I'm jumping the gun because we really don't know how we will react to the meds. I'm also having an emotional day as the menopause is finally hitting me 4 days post surgery. I joke that I look young on the outside (I get mistaken for 18 all the time which is not a bad thing lol), but am old on the inside. My emotions are all over the place and I've had about 15 hot flashes today lol.
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BAP - I'm on Letrozole only at present. I discussed the option of adding Ibrance with two different oncologists and both felt that we should try Letrozole on it's own and keep Ibrance as an extra tool for if/when the Letrozole stops working. I think it comes down to several factors as to whether you take a single or a combo - age, stage, type, other health issues, etc. In my case I was almost twelve years from initial diagnosis/treatment to reoccurrance. For 11.5 of those years I had been taking Tamoxifen. And while no one can say for sure it may be that the Tamoxifen was keeping things quiet, or maybe not. I stopped Tamoxifen in June last year and whammo was diagnosed with MBC in Feb this year. I started Letrozole in February this year. My bloods came right pretty soon after I started and my TMs have steadily decreased. My most recent scans showed everything is stable with some reduction in liver spots & signs of healing in my bones. Also my plerual fluid has pretty much dried up.
At the end of the day I think it comes down to what you and your medical team think is right for you. I have moments of panic when I see so many studies/examples of people on combos but then there are many examples of people who do well on just one drug. Personally I like the idea of keeping Ibrance back to use at a future date because Letrozole is unlikely to work forever. And things are changing so rapidly that who knows what options are around the corner. My MO mentioned that there are now studies showing that you can revisit some chemo drugs if you have no used them for 10 or so years....
Hope that helps
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Hey AnnieLNZ- Thanks so much for the reply! Definitely interesting to see the other side of things. I meet up with my MO in August and I'll see what she has to say. I like having info before I go because sometimes I make decisions about treatment too quickly when I am put on the spot. I definitely agree, it really is so individual to the person. I want to make the best decision possible for my future
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Sandibeach, congratulations on the wonderful news! Cheers to a long dance with NED.
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I will have my bone biopsy on Aug 1 but the bone scan indicates that I have bone mets. I have always been proactive with my Stage III C ( 11 years ) but the last onco would not listen to me and did not want to prescribe me Femara which I begged her to continue since it was my magic pill . So a year later after taking Femara every other day only I have bone mets. I am ready to do what it takes to achieve NED status. I was very activeZumba 6x a week) no pain but after taking a long trip long trip I felt my legs very heavy & was not able to get up.
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Hi everyone! Popping in with a question, I hope you all don’t mind. So, last weeks bone scan mentioned uptake on a rib and nothing else, not even my original hip bone met. This rib has felt like it rubs against my other rib when bending over to tie shoes, sort of like a knee that pops out of place. I told my MO and she agrees that it sounds more muscular than met. Anyway, below is pic of the report and nih explanation of non cancer causes of radio tracer uptake. No other organ involvement except stable in the brain. So, do you think I’m basically NEAD in the body? If not, I think I’m close.
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