Triple Negative Stage IV
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Carolben,and Brenda, Thanks
Starting the AC portion of dose dense ACT this morning at 7:30. Fingers and toes crossed.
All I have to do is get through this day. One bit at a time.
Dolly
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Dolly - I hope your treatment goes well today. I am thinking of all you are going through and sending positive thoughts and a big cyber hug.
Well everyone, my latest CT scan shows that my lesions in my lung are gone! Thyroid tumour is also gone! Still a few small spots in my neck but so small they wouldn't treat them if they were just discovered. No new growths since my last scan at the beginning of July. So I am staying off chemo (last treament of carbo/taxol was June 18th. My MO is going to refer me to a radiation oncologist to discuss treatment of these little spots. Ofcourse I am over the moon thrilled. Next scan in 12 weeks - so the wait begins again. I feel like I am living my life in little blocks of time. In the meantime, I have been reading all kinds of stuff on integrative oncology. I am particularly keen on a book called Life over Cancer by Dr. Keith Block (www.lifeovercancer.com). In the last five weeks I have given up dairy, gluten, red meat, pork, refined sugar, processed foods and bought a juicer. This is a huge change for me as I was a bread-a-holic and real red meat lover. I have been lactose intolerant for 15 years so that part wasn't as hard but I am missing cheese. A second opinion is still in the back of my mind.
Cat - I am still looking at trials but my oncologist doesn't think its my time yet.
I wish each of you a peaceful day.
~ Kelly
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OMG, Kelly, this is wonderful news! I am hoping for continued good health and scans for many, many years to come! I hope some of that good luck rubs off on the rest of us!
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Kelly - such wonderful news! Many good wishes that you continue on this good path. My MO was saying that clinical trials are my best bet now since a lot of them exclude you if you have had too many chemo treatments. Hopefully, you won't need any more trials!
Dolly - so glad to hear you are on a plan. Taking it a day at a time has helped me get through too.
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great news, Kelly!!! So good to hear, lovely to have a nice chemo break. Hope it goes well with your radiation oncologist. Gee, you sure have made huge changes in your diet!
Hope your first chemo went ok, Dolly, one day at a time, sometimes just a morning or even an hour at a time too!
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Thanks Brenda, Cat and Carolben! I am trying to figure out how to put some of my good luck in an envelope to send to all of you. Keeping my fingers crossed (and toes too) for you.
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Hi. i have stage 4 triple negative. Am starting chemo with taxotere on Tuesday and am really scared it won't work. I have 2 children who are still children - oldest grown up . Can anybody give me some encouragement. People mean well but nobody understands this hell who isn't going through it.
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Dear Barb,
Please don't assume that taxotere won't work. I took a related chemo (Abraxane) and it has worked for me and I'm NED right now. Chemo works better for triple negative cancers. I know it's hard to keep a positive attitude, but predicting a negative future is just fear talking. Try to find a different inner voice, one that says 'we're going to shoot this damn cancer with a big gun and it's going to feel it'.
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Barb - Taxatore seems to be a common one to try off the bat. A lot of people do well on it.
I had taxol first for 18 weeks straight and it was very hard. Now, I am on a trial with Cisplatin with a PI3K inhibitor. I had my third week Cisplatin treatment on Tuesday and have been down and out for a few days. I can't explain it, but I feel like I am not even in my body and just trying to exist. Does anyone else know what I mean? I drag myself around from bed to couch but trying to take care of my kitties in between. I have been pretty nauseous too - can't eat much. Is anyone else having this with Cisplatin?? Thankfully, I get one week off Cisplatin next week, but not the inhibitor drug. I hope it gets better.
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Hi Barb, I know its sounds dumb, but just try to take things one day at a time. And make some time for yourself each day to do something that makes you feel happy. I take Ativan for anxiety. Its a nice one because you don't have to take it all the time and it doesn't make you feel weird, it just takes the edge off so you can get a better nights sleep or cope in a particularly stressful situation. It has helped me get through these last 9 months.
Cat - sorry to hear that you are feeling so rough. I haven't had cisplatin but carboplatin gave me some nausea problems. I ended up taking 2 zantac 150s a day and chewing gravol ginger lozenges to get me through. Maybe talk to your once and see if these might help and be OK for you.
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Dolly: Like Carolben said, it's good to have a treatment plan in place. I hope the s/e's are tolerable or nonexistent.
Barb: I had taxotere 5 years ago and I remember tolerating it well. The only bad side effect for me was losing all my hair and getting the inflamed follicles. Other than that I was okay. I am finding out that not all people react the same to a particular drug.
Tina: I had carboplatin/gemzar which made my blood counts low, sometimes needing a blood transfusion. I don't remember being nauseous, just light-headed due to low rbc's.
Hugs to everyone!
Brenda
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Hi thanks for your encouragement. It helps a lot. I am hoping to feel a bit more positive when I start the chemo on Tuesday.
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Hi Keidel
Thanks to you and everybody. I feel so cowardly and week at the moment but am trying to take it a bit at a time. Everyone on here is so brave . It's hard having to be brave for the family when you feel like shouting and crying but that's what's so good about the forum
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indeed barb. I often feel guilty for coming here babbling my heart out but it keeps me stronger for those around me who don't need to hear all that.
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Cat, I feel the same way - am on Cisplatin & Gemzar, & I'm sure it's the Cisplatin that does it. Eating is the last thing I want to do, just try & drink water. Am also man down for 2 or 3 days - from my bed to the sofa, that's exactly how it is. But then around the 4th day after chemo this little light comes on again & I srart to feel better slowly. I get Emend anti nausea pills the day of chemo & 2 days after & that really helps. After that I take Ondansetron. The eating is hard, clear chicken broth, smoothies, some fruit. I drink this Ensure supplement. Do you also get the metallic taste in your mouth?
Am hoping the scan tomorrow will show that it's worth it!! Hang in there, ask for help for those bad days, hugs
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Carolben - I am glad to hear it isn't just me. I feel so wimpy on my down days and wonder how I can keep going on. Then, like you said, I start coming around 4-5 days after. I do get Emend on the day of infusion, then take 3 different anti-nausea meds: zofran (day), phenegran (night) and a patch behind my ear that lasts 3 days. I still have bad indigestion. I take a prilosec too but doesn't seem to help. I get bad reflux but no metal taste. Nothing seems to taste good anymore, not even pizza. I have this week off cisplatin, but the trial chemo pills I'm taking seem to give me nausea and indigestion too.
How did your scan go?? I hope you get good news. The nodes in the side of my neck are going down substantially so at least I feel it is working. My next scan is in about a month.
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I'm dancing with that lovely stably boy again!!!!!!!!
Scan showed no changes in my lungs at all. Onc says it's the bronze medal, but still good! Am sooo relieved. So I started cycle 6 yesterday, feel like shit, on the couch still in pyjamas!
Cat, eating feels like a punishment to me - and I can't find a drink that tastes good; water seems the least offensive. Sorry your combo makes it worse. I suck on indigestion tabs too & avoid citrus, even pineapples! I told my onc yesterday how flat I was & he assured me there's nothing wrong with lying in bed or on the sofa for those few days. So avoid the wimpy feeling (I get it too) and listen to your body. It really is ok, we are having some harsh stuff put into us. Just remember it's a few days then it turns. So good to hear the nodes are getting smaller - it makes it all worth it, hey?!
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Hi everyone. I had my first taxolere on Tuesday and the side effects have been just awful. It's so hard to keep going. At the moment it just feels like I have all the side effects with no positive change to the swelling in the neck and sternum. How long has anybody else found it takes to get over the side effects? Encouragement please and thanks Barbara
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Carolben - thanks for the support and replying even when you feel so bad. I know how hard that can be. Having this week off cisplatin has been so nice. I am only dealing with some nausea and reflux. Otherwise, I feel almost normal. I hope your bad days go by quickly. So happy that your scan showed no change! Hang in there. I am so impressed that you have made it to cycle 6. I will just be starting my second cycle on Tuesday. I will try not to feel wimpy and think of you for inspiration to get through those tough days.
BarbDenise- Taxol hit me really hard too, especially the first dose. It got a little better after that. I felt the same way after the first dose - that I couldn't go on. Thankfully, it got better, except the neuropathy in my feet. So, hang in there and come here to vent or get support. I also have nodes in my neck, sternum, supraclavicles and lungs. I usually felt crummy on days 3-5. Taking oxycotin really helped. Are you taking anything for pain? What kind of schedule are you on? I was supposed to get taxol 3 weeks on, one week off, but since my nodules weren't going down much, I ended up getting weekly taxol for 18 weeks when progression of my neck nodules happened. The rest of my nodules did go down during the treatment. Hope you get good results to make the misery worthwhile. When do you get scans?
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Hi Cat
Thanks for the encouragement. I feel a bit better with the side effects today. I don't know when I get scans but I am due for a review with oncologist after 3 cycles of taxol. I don't know how long it takes to have an effect but its not doing so yet as far as i can tell - depressed! Ba
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Hi BarbDenise- my onc considered it a good thing just keeping nodules from spreading or getting bigger. He didn't necessarily expect total remission on it which I didn't understand at first. His thoughts were that it gave me more time before having to try other chemos I hadn't received before.
Glad you are feeling a little better.
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Carolben, great news!!! Will you be doing more cycles of the combo? What is the plan? Thanks for sharing your good results with us. May you and the stable boy hang together for a long time... till NED shows up!
Brenda
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BarbDenise, I never had Taxol, but I had Taxotere five years ago and I am presently on Abraxane. Both are "taxanes" like Taxol. Like Tina they hit me hard the first few weeks, then it got a little better. I have neuropathy but I am no longer complaining.
Brenda
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I started cycle 4 on Fri, Brenda (have been on my couch since) - the plan is to do 6 cycles, which, all going to plan should end mid Nov. then I want a break - 3 months at least. I want to be able to get out there, enjoy the summer, swim, play on the beach, live a little. I'm only just past halfway thru this chemo & it's really hit this poor body - I weigh in at 49 kgs, about 108 lbs, really struggling to eat, everything tastes bad or I'm nauseous or my mouth is sore. At least that improves on my 2 week break & I try eat to make up for it then. So by November I'll be more than ready for a break. My onc is all for it too, says it's about qol etc.
Glad you're feeling better, Cat, it keeps me going during the bad days, knowing it will get better. Keeping the nodules from spreading & getting bigger is good, hope you get that, at least!
BarbDenise, glad the se's are starting to ease. I did 6 cycles of Taxol last year & it wasn't nice, and we also scanned after 3 cycles and it had shrank all the nodules in my lungs. So I'm hoping for the same good results for you!
Get Neupogen shots the next 2 days, at least it'll get me out of the house cos the nurse at my pharmacy gives them to me. My pharmacist called me on Sunday, just to ask how I was feeling! I love that man, he's so great. Sometimes I go in & have a cry on his shoulder, or share good news. People are so good to me: I have 3 young guys who, between them, take my dogs running on the beach nearly every day; my best friend comes over each day & makes me smoothies & juices. Other friends cook me meals, drive me around or just come & visit. I really feel so blessed. I'm in contact with my son, 2 sisters & my Dad nearly every day. Got to see how the glass is at least half full!!
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Hi everyone. I keep trying to distract myself but feel in utter despair. Its mostly because of the kids. My son who is 23 is very good with me and keeps encouraging me but my husband altho he means well keeps making it worse by talking about how awful it is for me etc How do you fight the despair and try to keep going ?
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Hi BarbDenise, have you discussed with your hisband how his comments are making you feel? Myself, I don't want sympathy. I just want to try and live as normally as I can for as long as I can. There is a pretty good book for men called Breast Cancer Husband by Marc Silver that my husband found helpful. Maybe it would help in your situation too. Some people find couples counselling or speaking with their minister helpful. It sounds like he is trying hard to support you but isn't giving you what you need. Maybe your son can talk with him? I guess I have lots more questions than answers for you. Hang in there, I find I have good days and low days. Its just part of my new normal.
Hugs,
Kelly
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BarbDenise - Maybe you could find a therapist you like to help with your despair. They might be able to help you with how to communicate your feelings with your family too. I see a therapist about every 2-3 weeks and find it very helpful because I can discuss all my feelings. Kelly also had a great suggestion with the book. Please keep us updated.
I had a great day yesterday and today. I had 2 volunteer pilots that flew me to Nashville yesterday for my treatment, then one flew me back to my town today. It was fun, well at least as fun getting chemo as it can be. I also got help with free room and ground transportation. It was amazing.
Carolben - it sounds like you have a great support system. After my cancer diagnosis, I lost most of my "friends" so I don't have much help. I also live away from family so I am on my own a lot as my husband also works a lot.
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HI, glad to have found this thread. Mets dx on Sept 15th, lots of shock and denial. Meeting with onc on Tuesday for plan, which will start with some sort of chemo. Been trying to read up on some and look into some clinical trials, but its a mess in my brain right now. My thoughts are all over the place. I have two kids, 10 and 14 and would like to make it 8 years to see the youngest graduate HS. We told them last night and while they were upset, it was more of the "oh, my mom is telling me for the 3rd time that she has breast cancer" than anything else. Which is good for now.
I work full-time, and don't know will happen with that. I am sole earner, my dh is stay-at-home dad and never went back to work. First time around during chemo I worked 1 week, took 1 week off, etc., but my role now is not as good for that, plus not sure work will agree to that for long term and not just 4 months. I tell my boss tomorrow.
Have told my family and my two best friends, but no one else yet. First/second time told lots of people, not ready for that yet.
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Hello ReadingMama,
It took me awhile to get my head wrapped around it. I was DX in January and I was a mess for several weeks...still have some bad days. Luckily I don't have kids to try and explain things to. Good luck with your appointment on Tuesday, let us know how it goes.
Sending you thoughts for strength and courage, Kelly
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Hi Readingmama:
My thoughts and prayers are with you and your family at this difficult time. I noticed that you have the same mets as I, plus I have them in a couple of other organs and your children are close in age to mine. It is a very hard place to be in but I hope you find hope and inspiration from people on this forum like I do; who have found a treatment plan that works for them. Then you will find all the other concerns about work and how to conduct your daily life will hopefully fall into place. You need to give yourself time and be selfish and ask for help or time off, so that you can get yourself in a place that you can cope. Welcome and I hope you let us know how you get on at the doctors.
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