Triple Negative Stage IV
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Wow!! That's great Kaay. So how does it work now? You keep getting the carbo till everything is gone? It's that simple? Great news tha should give us all hope
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I suppose staying on til everything is gone is one possibility but not the one I expect. I figure eventually my cancer will outsmart carbo, I'll progress and we'll move on to something new. That or my platelets will hit a point of not bouncing back and I'll have to delay so much, the carbo loses effect and I'll have to switch. Or, I could start having allergic reactions again and have to stop. And then there's the fact that even if we do achieve NED with carbo, my once says I'll probably still get treatment just to make sure it stays that way. That'd be fine with me though. Carbo and I live well together. I'd do twice a month carbo treatments til I'm 80 and call it a grand life, if it were an option.
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Hey Kay....that is awesome news! I had my first infusion of Gem/Carbo 3 weeks ago. Did not get to do the second infusion the next week because my ANC was low. Next Monday I have my next infusion. ONC is going to reduce dosage just a little to help with the slightly low ANC. Platelets and RBC's are good. No SE's so far. Will have a CT at 2 months and PET at 4 months. Hoping I can hang in there as long as you have. Still feeling good. A little fatigue on day two of infusions but that is about it.
Prayers for all you lovely ladies!
Julie
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Hi everyone:
Kay you are describing my pattern of treatment and I hope, should I fail on CMF, that gem-carbo gives stability - Wishing you and Julie big success.
I just recently have been re-scanned as the 3 or 4 days prior to treatment I've been swelling up with lymph fluid on my neck and side of my face - sometimes even creeping to around my eye. I have hydromorphone to help with pain, but I retch and vomit without warning (socially awkward!). Fabulous news is that I'm still stable and even some mets are smaller again !!! :0) They have seen some inflammation in the brain area where I had cyberknife surgery Sept '15 that may be explained by my perhaps having a flu (to explain the nausea/vomiting), but the other alternative: the swelling is a growth that's causing the nausea/vomiting. The good news is I have an MRI on Friday tomorrow and an appointment with the guy who did the cyberknife on Dec 28, who will review everything. ( I don't want any news that's bad before Christmas, just in case so waiting until the 28, after my next chemo treatment week Dec 20, is a good thing) .
Here's wishing everyone good news and peace for the holiday season. Still need to tell you all that this board is so necessary for my coping.
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Kaay- Great news! You are so great an deserve more than 1.5 years more on carb!!!! SHRINK SHRINK SHRINK!!!!
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Julie, so glad to hear you tolerate gem/carbo well. Have you done neulasta or neupogen before? I do okay with using both to keep the ANC up, though they are the source of my muscle soreness days 3 and 4. I consider the drugs as life saving as chemo since they make the chemo possible.
Josie, your "social awkward" comment cracks me up and illuminates your brave spirit. I hope that passes soon. To me, there's nothing worse than vomiting. Praying for great results on your MRI. Let it just be the flu and some inflammation.
Happy weekend to all and happy holidays to follow!
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kay.. excellent news.. i am happy for you and hope that you will hit NED and wish the same for all those who are fighting this evil cancer! What type of met do you have?
So far I have pain since i have finished treatment in my hips both of them.. and the pain seems to be getting worst.. my next appointment with onc is in march and he asked me for MRI to spine.
Cross fingers it comes out negative.
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Thanks, 4ever. My mets are all in the liver. I am so sorry to hear your pain is getting worse. Don't hesitate to make an appt. with your onc sooner if things don't subside. I am praying that they do and that scans are all negative! Are you still doing cytoxan? Have a wonderful holiday!
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i finished chemo back in February so i am on nothing now.. MRI to breasts.. brain and liver show all is good.. but this pain in my hips was never checked.. i started feeling this pain back in may and it is intermittent type of pain but lately i am feeling much stronger when i sleep on both sides.. the problem is that i am not in hurry to find out any bad news and at the same time i know it ia crucial to know about it as soon as possible .. a real puzzle.. so far i have decided to wait for my next appointment but if the pain gets any worst i will try to see my onc sooner.
Wishing every one here a fantastic Christmas and lets all enjoy the moment!!
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4ever- I will be thinking of you. Hopefully it is your mind worrying and not cancer. I wish you just need to sleep with a pillow between your knees when you sleep-HOPE HOPE HOPE, thinking of you!!
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thank you Steph. . I will try to focus on something else until March (next appointement) .. what about you? How Is the treatment going? How are you holding on?
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4everStrong, I'm having the same problem. A few weeks ago my hips started hurting in my sleep - I sleep on my side. Now it's turned into a constant pain in my right hip, right tailbone, and behind my thigh. I am concerned. My next scan is not till February. I'm going out of town tomorrow, but if this is still an issue I'm calling my onc next week. My fear is that if there is a tumor pressing on my spine, it could cause permanent damage.
By the way, I qualified for the CDX-011 trial with the tumor testing. But my current tumor needs to be over a certain size to start the trial, so I wait. Frustrating.
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It's in my hip. it's in my sternum and I think it may be in other bones too. My original mets were lungs and last PET showed that they grew, but overall I have no symptoms (like pain or shortness of breath) from my lung mets, but the bones are very painful. it's hard to walk and it's hard to pull myself up to sitting or standing when I'm laying down. But the very worse thing is the oozing from the large tumor on my breast. My clothes quickly get soaked and it doesn't smell too good. Kind of like having a bad nursing day
. So I went for radiation. It was supposed to lessen the pain everywhere but so far not so much help. Also it's supposed to stop the oozing... I'm patiently giving everything more time...My eribulin wasn't working (4th type of chemo unsuccessful.). The doctor has lot of other ideas. i'll put them here next week when I have time.
Wishing everyone Happy holidays
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minixie.. CDX-011 trial? that is good, hope for you to start the medicine soon.. please let us know how it goes with that, i have done some reading and it sounds like this is a fantastic trial.. the antibody they give is supposed to help the T cells fight cancer.. (hope i got it right, please correct me if I got it wrong).. sorry to hear we are experiencing the same symptoms with ur hips, fear is awful .. and I agree with you once the pain gets any stronger we have to act!!
donnadd.. sorry to hear it is in your hips and in other places, this cancer really sucks, it is good that your oncologist has many ideas on how to attack it, please keep us in the loop.. fingers crossed he will find the medicine that will be working for you
Ladies and gents here and in other threads .. you will be in my thoughts and prayers and lets live our lives fully!! enjoy every moment we still have !!
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Happy Holidays! I am grateful for each and every one of you!!!
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Here's what's doing. My biggest pain is when I first awake. It's hard to pull myself up in bed cause of the pain in my sternum and around my ribcage. I get up to go to the bathroom and can barely take the 3 steps. I need pain medication first thing. During that time, I am positive that I will die today... But then the pain medication kicks in, I drink my first cup of coffee and decide that I'm not dying today.
Since my main mets are in my bones, while it's painful, I don't believe that I'll suddenly stop breathing from those pains. i'll last till my appointment with my onc on Wednesday
The drugs she's considering for next are Navelbine or Casodex (I might be wrong on that name, she said Casloda - maybe it' a different drug). But on top of that, they're staining for Androgen receptor - Does anyone know what i'm talking about? If it's positive they will give me xeloda... Actually I'm not sure about any of this since I'm just reading the onc's report and I'm translating it from Hebrew and I definitely don't know these words but when I actually speak with the onc I'll get her to clarify the names. I also have the other hospital who took a biopsy 2 weeks ago - I'm not sure what they're trying but i know they're trying my tumor with existing medications so if it works, they can give me that medication right way. My onc says, Let's wait and see what they find in the other hospital. 'm not that happy with that. Maybe I should just switch to that other hospital.
I sort of dread going to sleep cause I worry how I'll be in the morning. I know I'll feel worse first thing. I spend a lot of time worrying about who I didn't tell enough to (like my kids - they're big). It's hard having no idea of where you stand. When I wake up feeling like I can't move, I think I should try calling them right away to come home (2 are out of the country) but then as the day goes along I feel better and I'm glad I didn't make them drop everything and run home.
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donnadd so sorry to hear all the pain you go through on a daily basis!! we are all in similar and different situation at the same time.. hope that you get quickly to a treament that will work for your particular case. one step at a time as my doctor says!
and yes we understand what you are talking about when you say Androgen receptor, your doctor is trying to target the treatment to your particular case.
Lets hope 2017 will be gentler with all of us!!
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Donna and Forever, I am so sorry you are dealing with so much pain. May you indeed experience a much gentler 2017.
Donna, I am Androgen receptor negative but Xeloda at one time was the chemo I was going to try after my current one so I know it's not just for AR positive ladies. If I remember right, Texas is also AR neg. and she did well on Xeloda for a while. It is good to hear that your onc has lots of ideas. May they fine tune the best plan for you quickly. Your frank words about waking up feeling like you're going to die and then feeling like you're not later in the day...it captures well how deeply we feel things minute to minute in the realm of uncertainly this cruddy disease creates. And pain makes the dreadful aspects all the more real. Keep your sound perspective and come here with all your desperate thoughts. We know them and are here for you.
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Hi homehelp; i have been tracking this trial for a long time.. Thank you for sharing!, I was interested to meet patients in this trial to ask about their experience in taking this antibody unfortunately I didn't manage to meet anybody yet!! not many are aware of it and I have a very limited information about this drug.
it says that it could be very helpful for us:: but again many studies say the same thing and only our doctors can guide us through the trials and real opportunity in our own particular case.
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Hello Friends, Thanks soooo much donnadd. I'm on Adriamycian and Cytocian (probably not spelling it correctly), however, I'm still Fighting Hard! I was 168 lbs in February, I started loosing weight in September and I'm now under 125 lbs as of 2 weeks ago when I go my Chemo. It's very hard to Eat, everything is salty. I don't have an appetite. I'm on Oxygen and just sitting up makes me out of Breath. My Husband Drained my Catheter Christmas Eve and 1000cc came off my Lung. But I'm Thankful for everyday. I never had more than a Cold in my Life so this all is a bit much. I'm enjoying my 5 Grandkids and Wish for Better Days for us All. I'm Praying for a Cur
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I most like to hear that they are finding more things to be effective in heavily pre-treated cancers. At some point, we'll all be heavily pre-treated and having more options with some likelihood of working sounds great to me. I do hope it gets fast-tracked for those who need it now and can't get the trial. Thanks for sharing Homehelp. Here's another article I read:
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I'm back from my Christmas vacation and still have hip trouble so I made an appointment with my oncologist, but he can't see me until the 10th. I hope it doesn't get much worse before then. When I see all these posts about trials of new drugs, I wonder if we're doing the best for me here with the CDX-011 trial. I guess there's no way to know except to try it. I hope all of you had wonderful holidays, and may we all have a happy and healthier 2017!
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happy new yeaaar
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Kaay - I see I mixed it up... If I'm AR positive I will get xyloda cause that's my next drug to try. If I'm AR negative I won't get xyloda yet cause then I can get Casodex . Anyone have any advice about either if those drugs?
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Donna
If you are AR positive you qualify for xtandi
That drug is a much stronger androgen receptor blocker than casodex
That is unrelated to xeloda which is a chemotherapeutic agent
The xtandi and casodex are routinely used to treat prostate cancer as well
Hope it helps
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Homehelp- I was on doxil for two months and recent scan showed progression. Side effects of doxil are lingering just wondering if your wife had similar effects and if so how long to heal. My skin is very sensitive and is peeling anywhere there is friction underarms, between fingers, ect. Also issues with mouth and throat no sores almost like a sunburn in mouth and down throat...lost 10lbs in 12 days. I am going to have a scope put in my throat Tuesday because base of esophagus lit up on pet scan. Onc. said it is a wierd place for breast cancer to settle. She insisted that I return to mayo for the scope (3 hours from home). Anyway moving to gem/carbo on the 9th. I hope gem/carbo give me a little lasting response...fingers crossed!!!
My mother (I am only 35) is encouraging/nagging in a loving way to visit the cancer treatment center in Chicago. ...anyone have any thoughts about this??? Love to hear your opinions. Also mother in law printed papers from johns hopkins.
I hope we all make it through 2017 and continue to be suppotive of each other! Happy New Year! Last night my kiddos came home from New Years neighborhood party with my husband, so picture me tired mama in bed watching the discovery channel at 2 am...in comes my six year old to snuggle and breathing dorito breath in my face (yucky)...next my four year old climbs on top of me to snuggle...he is not very coordinated so he is stepping all over and falling he gives me a kiss and smells like Doritos too and he leaves wet Dorito dust on my lips (yucky)...finally with a fresh diaper my two year old piles on he wiggles between the other two as he always does he is kinda a brute. So he snuggles nose to nose with me and his face is COVERED in Dorito dust. He falls asleep breathing in to my face...he is a very particular person so I don't dare move until he is asleep. Amid the stench of their breath I just smiled because I will do everything I can to survive as long as I can so that I can continue to collect Dorito kisses.
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Happy New Year everyone. Strength to everyone! and lots of Dorito kisses to all.. ( my guy when he was 4 and learning to read asked : "Mama can we have some Dorry-toss?" - family's favourite chip from then on!
re. visiting other cancer centres - my thoughts: the more information, the better.
Donnadd - I am so sorry you are having that oozing still - can't they suggest something like corn starch, or an absorbent powder with a dressing? They don't seem too considerate of your daily quality of life.. I so much understand the pain of side effects and I panic as some of mine can be brain-related and resemble a stroke.
sister-sister your positive outlook despite all that fluid being drained is my example as I gurgle, cough up, etc etc..
My good news is that the rad. onc who did my cyberknife procedure in my brain believes the 1cm thing on scans and my symptoms are from scar tissue and my lymph fluid. He says its like a sensory seizure rather than a physical seizure as with epilepsy. (I go deaf and I hear like an increasingly loud wind with excruciating pain and my vision fades -luckily only lasting 2-3 minutes; clammy, shaky and vomiting after is highly likely). So glad to hear I'm not having a stroke!!!! :0) Will monitor symptom frequency and re-scan my head in March. Anti-seizure meds or physical surgery could be later responses, too.
Re. Xeloda - I had that for 3 months last spring, but didn't get enough of a response to continue.I had only mild nausea and mild fatigue for the first few days, but otherwise it felt great. Donnadd hope you get some stability with it.
Homehelp - thanks for the drug names for AR pos. tumours. I'll ask further about whether they are available in Canada as a treatment options.
good wishes to all, Josie
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That is so beautifully gross.
In the midst of all your discomfort you see the crusty, dusty cheese lining. Golden.I contacted CTCA at my dx as my aunt went there and loved it. They don't take my insurance so it was an obvious no, but I was leaning against it anyway and so wasn't disappointed. Ultimately, I'm not convinced anyone gets a better result there than with conventional care alone, but I do understand wanting to do everything you can. What I do wonder is if CTCA's standard medicine is as good as that of top conventional treatment centers. I also wonder if I wonder this b/c my aunt left my current center to go there and died in a year's time. They do cite superior survival rates, though some have called into question the validity of their data. It's a tough and personal choice. I wish there were a fool-proof way to ensure the best outcome for all of us.
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Happy New Year to all you lovely ladies! I haven't posted on here for a few weeks. Been busy with the holidays and enjoying time with my family. Started Gem/Carbo back in November after a year on CMF. I have had two cycles of the Gem/Carbo but due to blood counts (white the first cycle and platelets the second) I could not do the Carbo on week two. The cycle is Gem/Carbo week one, Carbo week two and then week off. I see my ONC on the 9th so will see if we reduce dose again or what the plan is. Only SE has been a little more fatigue than usual.
Hoping 2017 is a year of good news for all..... Still living life and enjoying our retirement. So glad I made the decision to retire early and enjoy time with my DH. We have two trips planned for the year so far. Vegas in February to celebrate with my daughter and her husband. My daughter received her Masters degree in December for Nursing Administration. Our son and his girlfriend will join us. Then in March we are off to Greece for an Ocean Cruise.
I pray for you all daily. I am a positive outlook person, I know that my life will be cut short due to this horrible disease, but I am one to not dwell on that and to live what life I have to the fullest.
Hugs to you all,
Julie
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