Triple Negative Stage IV
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kaayborg, glad to hear you are stable. Good luck with the radiology appointment! Mike, sorry to hear about your wife. With the cancer changing type so frequently, I can only imagine how difficult it is to nail down a treatment.
I've made no progress with the Foundation One bill. I'm waiting for them to contact me and I'll see if I can get financial aid.
I am trying to work out my plans for the summer and it's so hard not knowing where I'll be at in a few months. Last summer was ruined by the discovery of my lung tumor. I had to take 3 weeks off work after surgery and lost all my vacation/sick leave. This summer I have two trips planned but I'm scared to commit financially to anything, lest I am struck with misfortune again. I want to travel while I still am feeling well. I just wish I knew what this cancer has in store for me.
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minxie can I ever relate to not being able to make any commitment to the future - especially I find with kids. Less than 6 weeks ago I had an emergency acute breathing crisis with no warning and my chemo recipe stopped working. Now my family wants to fly out and visit and I'm hoping 2 weeks on new regime I won't be vomiting.
. ! Life unfolds..... hello to all and wishing you strength , J0 -
Minxie....I say book the trips. We booked our upcoming Ocean Cruise from Greece to Venice last year in October. I had no idea if I would be around or feel up to the trip. Well guess what....I feel great and am up to it. We always buy the travel insurance when we book a trip, make sure it covers pre-existing conditions. By booking these trips and making plans for the future it gives me even more to live for. I have milestones on my list that I want to make. I turn 55 the end of this month and I can draw my retirement from a former employer....I have it set up so that my spouse will continue to draw the money when I am gone. We will be on our cruise on my birthday. Then the next milestone is my DH and I will celebrate 30 years of marriage in June of this year. I plan to be here for that too! Family vacations are always in July, so must stick around for that.....I haven't made any plans beyond that but I am sure stuff will come up.
We can't not live our lives!! We have to keep planning for the future, even though we know our future is not like everyone else. Every year since my initial diagnosis in 2013 I have wondered is this my last spring, summer, Christmas?? Well I have now lived through 3 of those and are planning for the 4th. Live everyday as well as you can. We all have bad days......but try not to let them get you totally down.
Prayers and hugs for all you lovely ladies!!
Julie
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Hi all.. I really should keep in touch but it's harder for me to use my laptop (just reading glasses issues ad not sitting comfortably... - stuff I should deal with).
I'm doing in between. I just finished my 2nd round (2 weeks on - one off) of xyloda and I believe tis is my 4th type of chemo that is not working, It's easy for me to tell since I have a large tumor on my breast (no point in operating since he cancer is much deeper than that) and the tumor is oozing. It's awful - constantly changing bandages and onc says the oozing will stop when the chemo works!! If only.
next week I'm going to onc so I'll see what she has up her sleeve, but yesterday I also stared trial herb. Was recommended to me by a relativ of a relative who happens to be he head of all trials at a certain health fund's hospitals here. That's how it works here... She's medically high.
So she recommended Maitake Mushroom extract. so I went back to my onc who sent me to their hospital's doctor for alternative treatments. So he went to the Sloan Kettering site https://www.mskcc.org/cancer-care/integrative-medi... .. He said it doesn't promise to cure but it won't harm. The doctor who recommended it said she's had good results from it (I'm not sure what "good results" means, but no one said not to take it. It's easy to get, not too expensive, doesn't interfere with anything else). So I've started taking it.
We don't talk religion here but I've become stronger and stronger since I'm sick with this TNBC. It doesn't react to normal treatments (I've failed 4 chemos) so I need some miracle in there, We do lots of praying but you have to do your part too. G-d will cure me if he wants to and that's why I'm praying plus other religious stuff (studying bible, doing good deeds, giving lots of charity...) . And taking the Maitake mushroom extract is part of my faith that there can be something that will work for me. You can try them too even if you're a total atheist
. The Maitake mushroom isn't some voodoo herb. It's a natural supplement that has some anti-cancer use. And it has no side effects. Has anyone here heard of it?I have more to say about my condition, but out of time for now
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Donna - I did the maitake capsules for awhile, when I was going nuts with my attempts at healthy living to keep mets at bay. I obviously didn't help in that regard. But i say go for it - it can't hurt! If you ever see in the market Hen of the Woods mushrooms they are the same thing. Tasty sauteed with butter and shallots!
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Donna, I am so glad to hear from you and so sorry that again you are finding little success with chemo. Still, your spirits seem up and you are finding new things to try. Always thinking of you and praying for you to find your treatment. Be well.
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Hey Donna, hang in there. I am also on my 4th chemo. Hoping to get some results with this one! You are in my prayers!!!
Prayers and hugs for all you lovely ladies!!
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So overall I feel pretty lousy. I try to act positive for the people around me but sometiimes I feel like I've had enough. I try to sleep sitting p cause I wake up feelinglke I'm gettig fluid in my lungs, It's not a lot. But I hear wheezing in the mornig. I don't know how fast tha is movig.. I can't walk but it's imprvrd a litle. I can gt to the batroom dor on my scooter and thn can take 3 steps to the toilet and can take care of myself - but it's exhausting.
Life is exhausting and there are so many people around me all the time. i'm so blessed with so much family and friends. But they're so exhausting.
I wish I Knew where my future is going
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Donnald thank you for the update. . We are all with you.. lots of hugs and We are all in thé same boat.
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I understand Donna . They drain1 l fluid from my l lung 3 times/ wk and I gurgle in between, also can cough up foamy stuff. Very weak on energy and spending most time seated resting. Family all visiting - very grateful and feeling beloved and blessed. Thinking positive thoughts for all
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Hi; I'm brand new to this group and to my DX. Scheduled for PET/CT to learn of extent but am researching for options while awaiting results. Bx last week, supraclavicular mass in neck, shows TN (though idk if the Her2 report is in yet; MO says very unlikely it would be Her2+ this time around).
Just met with MO today and so much info to process. Meanwhile I also started a few pages back on this thread and see talk of Foundation One test. Why does one do this kind of test? Thanks in adv for more info or link to same.
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Awe, Chirps! Another stage 1A turned metastatic. This shouldn't be possible and especially you having made it so far out from your initial dx. Sorry you're having to join us but know you are so welcomed!
Foundation One could help inform what treatment options would be most effective. It didn't point out much for me (just confirmed why the tx we started with is working) but definitely ask your onc about it.
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Thanks much Kaayborg! Thanks for the warm welcome and for the info about F1. I just called them and asked for some info by email and for a financial aid app. Will send email to my NurseNav shortly.
I can't quite tell from your sig block, are you on Carboplatin or "carboplatin + gemzar"? Has this been for nine months?
The IA => IV, shocker isn't it?! So I see your case and am grateful that I had some non-cancer time after my initial tx. What did you do for tx between Jul '15 and last June? I'm so so sorry you're on this path. I'm still feeling like my hair is on fire and you sound so, well, stable. Thanks for being a beacon in the night for me!
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Chirps, I actually do feel quite stable, relatively speaking of course. Surely beats the hair on fire of the first several months of mets dx. That is a great description.
I can't get the sig to display my date for starting gem/carbo. As soon as I updated with the carbo only, the date disappeared. I started gem/carbo in Aug. 2015. It worked great but platelets couldn't hack it despite reductions of gemzar and delays. The hunch was carbo was most effective and this seems to be correct as I've stayed on it alone with success for almost another year now. I have only liver mets but loads of them, innumerable small and two big ones, which were first discovered at almost 10cm each and are now about 2-4 cm in size. The most reduction happened right away and now I'm staying stable or a few mm smaller scan after scan.
Keep in touch with your treatment plan. I hope stable is in the works for you very, very soon!
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Thanks, Kaayborg!
Wondering, what chemo tx are my TNBC stage iv sisters on? Can I find out more easily by posting a new thread? One chemo I'm supposed to consider is Doxil but only the mods replied on the thread I started about that a couple days ago.
Can you tell me, are there other things similar to Foundation One? So far, my MO is telling me (via nurse nav) that FO isn't shown to be useful for BC. That it's okay to use if you have lung cancer, but just "not there yet" for BC. I don't understand, then, why others are using it for BC! Of course the ppl @ F1 don't agree.
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Hello 4everstrong, I do see that this tread has gone Silent, however, together we can't let that happen. I will continue to post on my Sister Tracey Behalf and talk about her Journey. I Hope you're doing well. Keep up our Figh
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Hello Chirps, my name is Selena, I'm now speaking on behalf of my sister Tracey who Fought Hard, but lost her Battle after getting Mets to the Lungs and Brain. Welcome, but So Sorry you're here after a long remission if I read your Bio correctly. The last Chemo my sister was on was Abraxane and another Chemo I for got the spelling but starts with a G. I'll Pray for Remission for You
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Hello Donnadd, my name Selena, I'm speaking on behalf of my sister Tracey who lost her Battle on January 21.Sorry to hear you're not feeling you Best. However, I'm Happy you have So Much Famil and Friends Around to Help you whenever you need it. I wish you the Best
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Selena, it is so sweet that you are posting here and continuing to support us. I pray you are well after such loss.
Chirps, that is crazy! F1 was mentioned to me and encouraged at my first appt. with my onc. It is definitely used and with success for breast cancer. It accurately pointed to effective treatment for me, though technically my onc sent me on the right path before the results even came back. I think you should get a second opinion. It seems very strange to have said that to you when it seems like basic practice to suggest this for breast cancer, at least as far as I understand. Does your onc specialize in breast cancer?
Also, I do believe there are studies similar to F1. My onc mentioned that later on we may do genomic testing again as different ones test for different things. F1 was encouraged first b/c I believe it is the most or one of the most comprehensive ones. I was cautioned that sometimes insurance won't pay and have read of others here who had that problem so weighing cost to likely benefit may be something to consider, but if it is covered, I think the choice is obvious, and you should push for despite what your onc says.
As for chemo, scrolling through and checking signatures in this thread might be a good way to pick up on them. All chemos can be effective with trip neg. I think some are more effective than others on different mets. E.g. gemzar is particularly effective on liver mets and is why we started with it. Xeloda and Abraxane in an immunotherapy trial are what have been lined up for my future treatments.
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A quick search found this. The first study mentioned is from OSU where I'm treated. Don't be afraid to take it to your onc. Ask for the research he/she may have that says it's not there yet. Maybe there's something new out there...who knows!
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Hi all
Josie1 was my dear wife and I am very sorry to say that she passed away yesterday. She died on her own terms in the loving arms of our three children and myself. She was 53. At the very end she was still herself and she never lost her grace and sense of humour. We miss her terribly. I want to let all of you know that thru this site, you gave her great comfort and a much needed sense of connection with people who truly understood what she was going through. Thank you and I wish you strength John. (btw, her name was Laura. She chose the name Josie because she admired it)
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Josie's husband, I am so sorry to hear that Josie has passed away. May you and your family find peace and strength through this difficult time.
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Josie1's husband...just logged on to this post by accident. I was so saddened to read of Laura's passing. I pray that you will be comforted by wonderful memories and find strength to look towards the future and all zithergood that lies ahead for you and your three children.
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John, thank you for posting. I read this sad news and was too grieved to respond right away. I am incredibly sorry for your loss. She and all of her grace and humor will be missed. Prayers to you and your family.
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John, so very sorry for your loss! Prayers for you and your family
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John .. I am so sorry for your loss.. your wife has inspired many and helped many wanting answers and confort. Life is what it is .. I am happy to have known her even though for short period my it was wirthwhile for me.
She will be remembered.
I know this news is devastating but we should look beyond and have hope.. one of us would/shouldmake it.
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chirps, you mentioned a supraclavicular mass in your neck as your recurrance site? My TNBC returned there as well to my supraclavicular lymph node in september 2016 (discovered after an allergic reaction to a bee sting). Is your recurrance limited to your lymph system? Mine is for now and i am on xeloda and a pembrolizumab immunotherapy trial. i chose the particular trial (phase 2) because there was no fear of placebo and I could take xeloda in pill form and avoid having a port put back in. I'm almost 5 months into treatment and although the most recent CT shows great promise with no progression and many nodes reduced in size i'm dealing with pretty sucky side effects from a jacked up immune response (hives, facial swelling, severe gut lymph node pain, fever)
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Sister Serena thank you for your kindness. I'm so sorry that you've lost your dear Sister Tracey. Hugs and prayers for your comfort.0
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Kaayborg, thanks for all the info. Finally I'm reporting back.
I started on doxil last Friday. Going for second opinion in a couple weeks. Also plan to revisit F1 topic before next chemo is scoped out, although mo says we'd probably be looking at xeloda. Hope to get 9 or 10 Tx of doxil first but time will tell. It's every 4 weeks.
Feeling more confident now, about my path and about strategy. Hated the uncertainty that was gnawing at me alongside the free ranging mets! Hopefully the doxil is starting to destroy the cancer now.
Going to revisit with F1 about financial aspects; they made it sound like they really don't want cost to get in the way however mo seems more cynical about that. At least mo has said that F1 is probably the genomic place to consider (over the options, most of which I can't name).
Doxil has been okay other than some queasiness and vanishing appetite starting about 36 hrs ago. And fatigue catching up to me...
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