Triple Negative Stage IV
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hi all: I've been busy with symptom management and a crisis dental surgery - ugh and then having post rad mouth issues with dental.. hopefully 1 more week to improve. Started gemcarbo - still grieving now recipe 5 in 18 months..but just had gem to start yesterday then bigger tx with both next week. Also had 1.2 litres removed from right lung yesterday and they think more in the other lung !!!
Hope ct result was good minxie.. and everyone else is managing ok.
Take care,
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Josie, I'm so sorry you're having dental issues. I despise dentist visits, I haven't been in years. Very bad, I know. Sounds like it's been a rough week for you, here's hoping things turn around soon!
I got my CT results yesterday. The good news is that things are fairly stable. No new mets, nothing found in my hips. They're thinking the hip pain is sciatica. But the one bad node in my chest is still there and has grown slightly, a few millimeters, from 1.7 x0.8 to 1.5x1.3. However, it's still not big enough to be in the CDX-011 clinical trial! The smallest dimension needs to be 1.5 cms and it's 1.3 now. So I'm on hold until the next scan in May. Which may be in issue because my onc mentioned these trials close out once they get enough people, ack.
Something disturbing happened yesterday. My 11 year old son told me he has a lump underneath his nipple. I checked it out and indeed he does, small but painful. I googled it and it's not that uncommon around puberty. But I'm taking no chances. He's seeing the doctor Monday morning and I'm going to push for some kind of testing. I just need to do this without freaking him out.
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Well, we've been sick around my house, too. Two daughters with strep (including one with vomiting) and an ear infection, too. This after my own icky cold and my youngest's stomach bug. Not a good month for health but we're on the up and up, and somehow I have escaped the worst of it. So thankful for Saturday, a long day of rest for us all!
Josie, praying so hard that gem/carbo is the magic bullet for you as it is proving to be for me.
Minxie, I cannot believe you are just mm away from that trial. Surely soon. When you need these things to grow, they don't. How about a little cooperation? My daughter had a similar thing at puberty and it was nothing. Still, you bet you have to get it checked out. This was pre-cancer for me so I did not push for testing but I'm sure I'd think differently about it now. Let it be nothing.
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Oops. That first paragraph I meant to post in the thread I read where moms were actually talking about their sick children. This is what happens when I go too long without checking in. Just blame it on the chemo!
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Hi all,
Kaay it seems many of us were under the weather during this time of the year.. same here I had a terrible flu with high fever for two days, same for my both daughters .. we ended up all with the same bug but thank god all at different times!
it is difficult when we have cancer and start caughing a lot we never certain what this is related to.. a simple cold or flu could get us worried and alam us! on the other hand I feel that I appreciate life much more than I did before.. I see happy moments differntly, i take the time to play and spend quality time with my kids much more than I did before.
I am still working so I dont spend all my time the way I like but I know better my priorities!!*
minxie.. please keep us informed when you start the trial, hoping for this to happen asap so that you could get going with the treatment and get as quickly to NED as possible
Josie, hoping for gem/carbo to work for you .. please let us know how it goes and how you managing side effects (if any)
thinking of you all.. . any more news from the rest of the girls donna? nrsteph? tx?
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Hey 4everStrong.....I have a CT scan this Thursday and results from ONC next Monday. Hoping for stable. We did our family getaway to Vegas weekend before last...Vegas kept my money
but we all had a great time. Below is a picture. Our next adventure will be a Cruise from Greece to Venice end of March with my loving DH. Living life and having fun!!
Hugs and prayers for you all!!
Julie
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I am TNBC, first diagnosed in 2011 with invasive ductal carcinoma with associated DCIS, grade 3, stage 1
Treated then with FEC chemo and double mastectomies with immediate reconstruction using alloderm and silicone implants
Rediagnosed in April 2016 with adenocarcinoma, TNBC with mets to mediastinum, supra clavicle, pec muscle and multiple nodes in axilla
Treated with Gemzar/Cisplatin
27 rounds of radiation
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Diana. . Welcome and sorry for you being here and for the return of this awful thing. . Did gemzar and cisplatin clear the tumours out? How many rounds? How did you manage your side effects?
Texaserose. . Thank you for sharing the picture you all look absolutely stunning! What à Nice family ! Fantastic to have each other and live life to the fullest. . Excellent idea to visit Europe, will this be your first visit there ?
Cross fingers for thursday.. I always try to deeply think positive before scans or tests.. hoping that my positivety will impact the result (I know behaviour not founded but I try everything)
Positive vibes to all. . Keep smiling and living.
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Hey 4everStrong, this will be our third time to Europe. The first time was in June 2013 prior to my original BC diagnosis in September. That visit was to London, then Euro Star to Paris for our Anniversary celebration, then rented a car and drove to Germany. Last September we took a river boat cruise down Danube from Germany to Budapest. I love traveling in Europe!!!
Diana, welcome to a great discussion site. The ladies on this board are all amazing!! I am currently on GEM/Carbo. Are you stable or NED now?
Julie
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Julie, great trip photo. Thanks for sharing. So glad you are out there having such a great time. Thinking of you and praying for great scan results.
Diana, so sorry you find yourself here but so glad you found us. This is a great group of supportive, knowledgeable and understanding people. Keep posting!
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hi all:
Julie so great to see your chemo isn't stopping you from celebrating! I travelled much before kids and loved the areas you are seeing. :0) Diana also sorry you are here but glad you found this group. I remain grateful to all who share their life stories as they are unfolding...
Julie I started gem 1st with my bone helper that can make me feel flu-y too . I will get gem and carbo this week 7 days after and then gem again. I am scared as I am so tired- just move from chair to couch and nap this last week. Not sure I can handle this next round I have been warned both will be challenging with nausea and fatigue. I will take emend zofran and decadron to manage but ??? How is your regime going? Thurs tomorrow is my double ingredient day ... yikes..
Hope everyone is managing well .
J
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Had a call from ONC tonight. Scan shows some progression...same mets, nothing new which is the good news. So off of Gem/Carbo and on to Eribulin (Halaven). Anyone have experience with Eribulin?
Josie....my blood counts could not handle the day 1 and 8 routine. So I got Gem/Carbo once every 3 weeks. Fatigue during week one,but by week 2 I was feeling great. I think if I would have done the 1 and 8 day routine I would have had fatigue during week two. I was lucky and didn't have any nausea. Hang in there!!
Hugs and prayers for all!!
Julie
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best of luckj on halvalenJulie and glad your onc is so responsive. Thanks for sharing your details. I will see how it goes.. I am losing my swallow so eating and nausea if there is vomiting is hazardous.. 😝 Will see how gem carbo works here too
J
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Julie, sorry to hear about the progression. I do hope you are able to get a lot of mileage out of Halevan. Glad there are no new mets. You always seems to weather the ups and downs so well...calm and steady.
Josie, my schedule is 2 weeks on, 2 weeks off in order to keep my counts up. I should also say I no longer do gem. My next schedule to try would be what Julie did. My onc really wanted to keep the two tx weeks together if possible. I hope you are feeling better soon. Fatigue and nausea are so difficult.
Best to all for a wonderful weekend!
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Hi ladies! I am sorry to have stayed away for so long but as I have mentioned before I live in denial land and the loss of sister sister was too much.
I had first cycle (day 1 and 2 and 9). Managed well. Went back and counts were too low so I go back tomorrow as I had my blood tested locally on Friday and were well above where they need to be. So to MN tomorrow until Tuesday and then Thursday I leave with DH and two oldest kiddos to FL. My brain keeps trying to get me to move out of denial land but I am digging in my heels. I like denial land, nothing bad ever happens there. I will enjoy the trip and seeing my kiddos on a plane for the first time is making me super excited.
Then back to reality M - swim lessons, T- Gymnastics, W - swim lessons, TH - gymnastics and tae kwan do, F - grandma's house, S - gymnastics, S- NOTHING!!!!!!! I wouldn't trade it for the world!
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Have a great trip Steph! Stay in denial all you want. Julie, sorry to hear about the progression - good luck with the Halaven.
Has anyone had the Foundation One genetic testing? Did your insurance pay for it? My oncologist ordered it for me in January. I got the results when I saw him a few weeks ago. Two mutations, neither of which have a treatment option. And both associated with "poor prognosis", the story of my life. For once I'd like to hear some good news about my stupid cancer. So that was kind of a waste. And today I found out my insurance won't pay for it - It's over $5000! They say it wasn't "medically necessary" and the Foundation One lab is out of network. I'm going to call the doctor's office tomorrow. If I had known there was a chance of insurance denying it, I never would have agreed to it. They were supposed to get it precertified by my insurance company. I don't have $5000 to spare, not now, not ever. Not happy about this situation.
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minxie - I found your story about Foundation One to be very interesting. My oncologist put me in for it back in December. I have never heard any results yet, because the first step is of course to persuade insurance to pay. I got a letter from insurance refusing to pay. I had to send some form back to Foundation One allowing them to appeal the decision. I haven't heard any more. I shall be most interested in future developments.
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Minxie and rgc77, I had the Foundation One testing done back in May 2015 ordered by my ONC. After it was done I also found out it would not be covered by my insurance. Foundation One appealed the decision with my insurance and insurance denied. I received a bill from Foundation One, I contacted them and asked for a payment plan. They told me I could qualify for financial assistance (my thought was no way....our household income was in the 6 figure range), I filled out the form, put our income on the form, sent it in. I received notice that I qualified for the financial assistance. So I am sure you two could qualify as well.
I had my first infusion of Halaven today. Will keep you all posted on how I do.
Hugs and prayers to all!!
Julie
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Julie, my onc actually made sure there was an application for financial assistance from the very beginning with me. I was informed that I was approved for financial assistance, so that is good. I also assume that because they did that, they will cover all bases to get to paid for by someone. I presume that is why I haven't heard anything yet. The wheels on the insurance bus go round very slowly indeed.
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My onc made sure I was covered before the testing. I had only three mutations, one explained why gem/carbo works so well for me, the other offers a treatment currently standard only for hormone positives, the other they know nothing about. Not great results. I feel for all of you who are stuck with the bill on that test, especially without any warning that you might have to pay. That's so wrong, Minxie. I do hope you find some good news soon.
Nrsteph, so good to hear from you! Enjoy FL! Tell 'er to take my cancer back. I got both my dxs while vacationing there.
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hi all.. a little update from me .. I had breast MRI and blood test this Thursday and it showed a tiny mass of 6 mm in the opposite breast of where I had cancer before. I am not under chemotherapy since a year now and all my white and red cells are below norm (they had returned to normal about 3 months ago)
My oncologist wants us to wait for three months and see the change to this little mass and I don't understand why I should let cancer grow in me.. I contacted my surgeon and she said to wait !
Anyway, I have an appointment with the geneticist 28th march to give my gene analysis.. will ask her many questions! Meanwhile I am meant to relax?!!
Hugs to all of you... hoping some of you have better news than me.
I will as always remain strong and keep emotions and feelings positive (at least I will try lol
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hi 4ever strong, I just wanted to share my aunt's experience with you.. she went thru BC in the 90s and so her doc has her get a mammogram every 6 months..last summer they spotted something and did a biopsy right away...it was so small that the biopsy got it all and she needed no further treatment. Did they ever say why they just want to watch it? I hope you get the answers you need.
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wow!! They could biopsie her tumour.. for my case they Said they cant biopsie. . And cant confirm its cancer yet. They said at this level its suspecious..
So they asked me to wait it out.. Until it grows a little to biopsie it!
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Hi all:
thx Julie for your schedule details. love denial land and so truly get the real life kiddos activities having more substance ! Foundation one I think isn't accessible to us Canadians really.. but I like that our pathways on treatment are very similar.. I think Halvaren may be in my future too.. my treatment schedule changed bcuz of my platelet count for gem carbo but they will try gemcarbo, gem, then rest week .. here's hoping I can proceed on Thursday as it was cancelled last week. My swallow has improved and my left lung is draining minimum 500 ml every m, w and fri so my breathing sleeping and coughing all greatly improved!!! Hang in there 4everstrong ..
Take good care everyone - great to keep reading how it's going for everyone.
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Scans show I still have stable disease. I am also scheduled to meet with a radiologist mid-March to discuss a local treatment option for my liver tumors in addition to carbo. I'm thinking of going ahead with it and hoping for the best. Side effects should be minimal. The only question mark is that embolization for breast cancer doesn't have a lot of data yet. Very good data for liver cancer though. We'll see.
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My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
Biopsy back, her estrogen positive BC has changed and is now triple negative. Oncologist will start her on Xeloda next week. This NOT the metaplastic variety of TNBC. How effective is Xeloda against TNBC? The way the Dr. sounded it was like the worst possible biopsy determination.
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Complex case as she has had 3 different types of BC: ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative Metaplastic BC.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has three cancers, one ER+ PR+ HER2-, 100% estrogen, grade 1 and inside that was ER+PR+HER2- 30% estrogen grade 3 plus the triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
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Mike, so sorry to hear of your wife. I'm glad you've found us on behalf of her and for yourself too. I was reluctant to join here...would much prefer face-to-face support, or so I think, but nothing panned out and I was so desperate for people in common circumstances, I jumped in anyway and I am so glad I did. There is so much here that helps...good information to help you make decisions, many understanding ears, and plenty of hope. Triple negative is not what anyone wants to hear and based on what I knew apart from these boards I was pretty sure my life would be over in a year's time. But, there are ladies here who have TNBC and are on still going strong almost a decade out from their mets dx. This has given me a lot of hope, though the not knowing at each bump in the road what might be next is still the toughest battle. There are many treatments on the horizon for TNBC and many are benefiting from these trials already. Chemo can also be especially effective with TNBC. Prayers that your wife finds what works for her and that it is long lasting. Keep posting!
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welcome Mike. Lots of information here and helpful to share details for sure. What I find hard is if you want to duplicate your circumstances and triple negative is so individual in terms of mets and developments for each person. I find comfort in learning the range of treatments and how people cope. Lots of hope to be found.
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welcome Mike. Lots of information here and helpful to share details for sure. What I find hard is if you want to duplicate your circumstances and triple negative is so individual in terms of mets and developments for each person. I find comfort in learning the range of treatments and how people cope. Lots of hope to be found.
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Thanks Kaayborg and Josie1 for the information. I see the long laundry list of treatments and it's mind-boggling the amount of pain and apprehension you ladies must endure. I was encouraged by the large number of new triple negative treatments in the works.
Something I just came across:
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