Triple Negative Stage IV
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Laura glad you're doing well and hanging on. Stay strong and focus on where you see yourself.
TexasRose glad you're doing well also. Yes I will be fighting this battle and praying for my miracle. I have never had taxol but have heard of a few who have used it. It's all so odd as different once do different treatments. I know everyone is different but we have to trust our team. I also have a strong faith and I trust this more than anything.
I am open to chatting to anyone so pm me a number and we can go from there. If your interested of course.
Didn't do treatment yesterday as my counts were too low. Had a neupogen shot instead and another one today. So even with the Claritin still pretty sore. I planning on going to work tomorrow but I feel like I've been hit by a semi truck lol.
Have a good afternoon. Lucy
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Hey Lucy, Hope you are feeling better today!
Julie
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Hi Julie,
Having a better day but still a little sore. How are you doing today?
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Hey Lucy, I am really blessed with the fact that I really don't experience any side effects with the Taxol. Even the TAC I had with the original diagnosis I was lucky to only experience some fatigue and of course the hair loss. I have had hair thinning with the Taxol so I just shave my head and found some wigs I really like (besides I never have a bad hair day
). My last ONC actually told me that either I don't know I feel bad....or I am just not telling him.I am an HR Manager we have 125 employees employed by our company. I work 10 hour days and drive an hour each way to work. . I stay active, try to walk 2 miles 5 days a week and eat a healthy diet. But with that being said when we go out for dinner or meet up with friends I do eat what I want and will have an occasional glass of wine or cocktail.
How often do you have your treatments? What are the potential side effects?
Julie
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Hi Julie,
Your life sounds like mine. I am an HR manager as well and also an administration manager ceo...lol. I wear many hats. Just had my 23 yr anniversary. It's been a great place. I have been very blessed as well with all my treatments. The last one I had the xeloda was the worst as it affected my hands and feet. It was horrible but was only on it for 3 months and it didn't do enough so the onc switched me to another. I am doing a study trial now. I truly want to find my miracle.
So have you had surgery to remove any of the Mets? My onc has said if it's not causing problems or discomfort she doesn't want to operate to remove them from my lungs. I have 2 lymph nodes one in my collar bone and one between my lower back and stomach.
I have cut back my hours to 8 now and planning to go to half time by end of the year. I'm actually doing some research on applying for disability. I actually feel really good and strong. I too eat very healthy wholefoods and organic. When we go out I always order a salad. I only eat chicken or turkey. I eat very little carbs but do have a little fruit. Mostly blueberries in my protein (plant based) shake and strawberries. No dairy and on occasion I eat a low sugar (naturally) treat.
My treatment I am on now I started on the 13th and it is weekly on Mondays. 3 weeks on and 1 week off. The se are fatigue possible neuropathy in hands and feet hair thinning and when I went I this week for my 3rd infusion my counts were low so they didn't do it. Instead I got a neupogen shot and another on Tuesday. So I go back on Monday and hopefully will be ok to have it. My onc also said she was going to lower the dose because she didn't want my counts to drop. She said it was still plenty of drug to be administered. I have done well so far on it and have felt strong for the most part. The fatigue has been totally manageable and I have increased my protein as well. I exercise daily at curves but my onc has me down to 3 days as I was losing more weight. I have lost a total of 51 lbs since my dx last August. Wow it will be 2 years on 8/8.
Well hope you have a great rest of the week. Stay strong. Thanks for posting too really is nice to have some consistant chatting.
Have a good one...Lucy
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Hey Lucy. I did ask about surgery to remove the mets. But I was told that surgery was not an option. Even if they removed the largest one at that time 1.3 cm there were too many (5) others that were less than .5mm in other places (lung, lymph nodes and sternum) to perform surgery on. I guess if by chance those small tumors were to go away and all I had was the larger one (now half its size with treatment) they would do surgery on it. There is a lady I have chatted with while getting chemo who is a now on a maintenance drug for mets...she is HER2+ and she had tumors in her chest wall and a larger one on her liver. Once the tumors were gone from the chest they did surgery on the liver to remove that tumor....so I guess it is possible but depends on the circumstances......she uses the same ONC as I do.
Wow 51 lbs...wish I could loose a few. I gained 12 with my initial diagnosis in 2013 but have managed to maintain my weight with this round. The steroids don't help me and my appetite!
Julie0 -
Hey everyone ! Ugh weight. I've gained 50 lbs in the last year mostly due to all the steroids when I have the brain tumor/craniotomy and subsequent cyber knife going on plus inactivity during that and when I was so sick all spring until June. Now I get the steroids every week when Im getting treatment, and even though its only once its enough. Its frustrating though because I went from basically walking with a walker and not very far and sitting or lying all the time, to a more typical day. Although I only work part time I'm still doing stuff. No running marathons by any means but in comparison to a few months ago...one would think I would have lost a few lbs....NOT. Its so frustrating. I did talk to my onc last time and she said she had no problem with me trying to lose some weight as long as I wasn't doing anything crazy. I haven't really buckled too much with the move etc. and trying to find the most healthy things with chemo mouth presents a challenge. Lucy, do you feel like eating a higher protein diet helped the weight loss along?
I'm having some not so nice neuropathy, my feet are so numb, esp my left foot and Ive noticed this week its been harder to type at work. Im taking supplements so we will see next week after my scans about a dose reduction or something. I don't want to stop this drug if its working if we can tweak the dosage and the neuropathy doesn't continue to increase.
I am almost out of sick/vacation time and I have filled out my FMLA papers. After they are approved I can apply for shared leave where folks at work can donate time to me. Theres been quite a few people here asking to donate which is so nice. If I can continue part time that stretches any donated time to double. I'm figuring I will be covered until the end of the year. At that time, or when its winding down Im thinking about going ahead and doing the disability thing.
This is my off week so in a couple of days into next week I'm hoping to feel a lot better. There's supposed to be a break in the weather humidity wise this weekend, looking forward to that ! I do have scans on Tuesday and Im already feeling the anxiety creep in.....
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Question, please. I have stopped treatments but have these lymph nodes that are swollen in my left armpit. They are painful and hard and have made my left arm start to go numb on the underside of the arm. Am going to see doctor for FU on the 10th so I'll ask then but thought I'd ask here.
Is there anything other than removal or chemo to make them less pain for or swollen? Just another thing to have pain over. Cancer is killing me by pain.
Thanks for your help.
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wrs, I don't know, mine went down with chemo. I know before diagnosis mine were achy and painful and ibuprofen and warm compresses helped. I didn't know at the time it was cancer.
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I should mention that I am on loads of morphine and oxycodone and they do not seem to help with the pain in lymph nodes. I suppose I can try the warm compress to see if that may help. Thanks again
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wrs, anti inflammatories help me more so than hard core narcotics. Just a thought
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I know that sometimes the pain is so bad it is hard not to use the narcotics. My DH is on oxycodone for his horrible nerve pain and he has it in his stomach left side, leg, hip and knee and sometimes what he takes isn't enough.
Wrsmith, can you tell me how your mix of the morphine and oxy work? Never heard of this and may be something my husband can consider. Also, what are you side effects you have with them?
Laura, what type of inflammitories are you referring too?
Have a good rest of the afternoon...Lucy
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Lucy,
When I decided to stop all conventional treatments I was sent to the pain management team at UNC Lineberger. We have had to struggle to get here but finally we have hit upon a good cocktail for me that seems to work well, for now. I take 200mg morphine every 6 hours and 90mg of Oxycodone every 2 hours. Now with that you see that I have to set alarms to ensure that I take the right amounts at the right time. And sleeping thru the night is non existent. However, not having that excruciating pain is worth all the sleep I am missing.
As for side effects there is constipation but Colasce, Senakot and Miralax seem to fix that for me, most of the time. Sleepiness is also a side effect and nausea sometimes. Nausea is taken care of by Compazine at this time. That's about it. I don't drive much anymore. Short trips to the store are about all I feel I can handle. Otherwise I get sleepy and it is dangerous.
I would suppose the anti inflammatory might be ibuprofen?
Hope this helps.
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Wrs is the pain from the cancer? Can I ask why you stopped the treatments?
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I got my scan results yesterday and they were really good. NED ! At my onc visit a chemo holiday wasn't even considered which was disappointing. I was switched from taxol to Abraxane due to some allergic issues. They did give me the week off due to my neuropathy so I start next week. Will have infusion every 3 weeks at a reduced dose.
Wrs I meant that sometimes an anti inflammatory may help a different type of pain. I hope you find some relief. My pain from taxol is helped more by anti inflammatories than narcotics.
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Laura
Fantastic news - hope NED stays forever.
Bosco
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Spirit blessing, my pain is from the cancer. And I stopped treatments because conventional treatments do not seem to help me. I am trying a couple of alternative things. I am also at peace with dying. I don't want cancer to take me but if it does then that is ok. Hopefully the alternative things will yield some good results soon. Haven't been doing them long so it's a wait and see right now.
So for now I work on seeing folks I haven't seen in a while and crossing items off the bucket list.
None of us are perfect but we are all forgiven. My God is good and He will take care of me as He sees fit.
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Wrs, sorry you have to deal with the pain on top of all this. My DH has a lot of nerve pain as he is dealing with an unknown issue for the past 5 years. He started with chronic diarrhea for the first two years and now it has gone to muscle loss on his left side of stomach his left thigh and hip. So he is taking oxycodone 15mg 4x a day and Gabapenten 300mg 4x a day. Sometimes it doesn't help so he has to really stay on top of it. I have heard that morphine can be added but he hates what he is taking now.
It doesn't look like you have tried many of the drugs available unless your profile has not been updated. I am glad to hear you have a faith in God and you have peace on your journey.
I am thinking very hard about filling for social security disability but so many things to plan out. I am still working full time but with my dx and my DH's issues it is time. I had planned to go to half time by end of the year anyway.
Any input or thoughts on applying for disability is welcomed. I know that I can work but only get paid $1,090.00 a month gross. I could go to half time and cut my salary to make that. I need to find out if I can still get my medical during this half time while still applying for it.
Laura that's awesome news...YAY \o/ !!! It's so wonderful to hear that. I hope and pray I can hear that one day soon. I am praying for a miracle and I am expecting it. I was on abraxane my first treatment that was a trial. It was pretty easy lost lots of my hair and had to get neupogen shots weekly with it. Had it along with a satin for 6 months. It did really well but then stopped after starting the pill portion of the study. Then I stopped that as it stopped working. Started on xeloda and was on that for 3 months and it didn't do too much so stopped it and now on a new trial with Eribulin 3 weeks on 1 week off. Just finished my first cycle and so far so good Hair is starting to fall...shoot!
Well warriors...have a relaxing evening...your in my prayers.
Oh saw this today and wanted to share, hope it doesn't come across as offensive.
Lucy
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Thanks Bosco!
Lucy I love that !!! Thank you. It's been a while coming and I'll take it as long as I can have it ! I know my short just starting to go out bare headed hair is going to fall out. And I know in life vs hair but the 3rd time around isn't any easier to be bald !! What I did change was my prayers and hopes etc. I was asking for please just no progression. At some point in the last few months I realized we don't get what we don't ask for right ? Given that, now I'm trying to remember Everything I've taken eaten etc to help it stay. It's like when the team gets to #1 it's great but then it's hard work staying there.
I still have lots of fluid all over my body. I feel like I'm sloshing around. Any ideas to get rid of it ??
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Congratulations Laura! Awesome News!!!
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Trying to revive this thread......
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I'll help, although I am not entirely sure where I belong. I am a stage 4 nomad!
For background, I was diagnosed with stage 4 triple positive BC last year with mets to my sternum and lung. After chemo and targeted therapies, I reached NED. But last month a new mass showed up in the same breast as the primary, and that one is triple negative. The doctors think it was there all along and is a different clone of the same bad gene. So somehow I am both stage 4 and stage 1 all at once.
I just started my treatment for the TN cancer last week. I'll be on a carbo/gemzar regimen and will continue to get herceptin for the triple positive.
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Hey Becs511...Thank you! How often do you get your treatments for the carbo/gemzar regimen? I also have a met to the sternum and 3 to the lungs. I am on Taxol and that seems to be working for now. 3 weeks on 1 week off.
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Hi Texas. I'm on a rather complicated 3 week schedule. It goes like this: Week1- Carbo, gemzar, herceptin; Week 2- Gemzar only; Week 3- Off.
I was on weekly Taxol for about 9 months and it is what brought my triple positive mets to NED. I'll keep my fingers crossed that it does the same for you! How have you been tolerating it so far?
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Becs511..I have been really lucky! No side effects other than the hair loss (including eye brows and lashes). No neuropathy, fatigue or nausea. I am really lucky. I work 4/10's as an HR Manager for an Engineering firm and drive an hour each way to work. Any side effects with your routine?
With my first CT scan after 8 weeks of Taxol. My largest (1.3 cm) met had shrunk in half and no new mets. Which was great news! Hoping for the same with the next one that will be in 2 weeks.
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becs
I'm on a similar routine to you but Cisplatin instead of carbo. I also have Zometa for bone Mets, Avastin for brain and Keytruda to cover everything. I feel like a walking pharmacy. Still stable at the moment so can't complain.
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becs its so crazy how these tumors are mixed or morph or whatever. How confusing it must be for you to be stage 1 and 4 at the same time. I hope your new regimen works !
Bosco I didn't realize that Avastin crosses the blood brain barrier, hmmm. I will keep that in mind to ask about that at my next visit.
Ive now lost 6 lbs (yay) and now losing my hair (boo) and I can say so far that the every 3 week Abraxane is going ok. I have one more week before the next infusion. I do get frustrated because I think recovery should be linear up up up and its not, its up and down and up and down. Hard to plan more than a day or so in advance. But at least the really bad leg pains only (ha) lasted a couple of days. I think next cycle if that starts up again Im going to medicate myself as much as possible to sleep, as nothing seems to ease the pain.
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i am also triple negative. First dx in 2013 stage 3. Both breast gone. Rads. Chemo. Year later stage 4. Mets in sternum. Pain since mastectomy and rads. Now cancer pain in sternum spreading to the right. Oncologist said no chemo just watch it with scans every 2 months and xgeva shots every 28 days. I did have rads to sternum. CT showed no spread about 2 months ago. I take norco10 every 6 hours and wear a 50 fentanyl patch. Pain still always at varying degrees. Worries me I'm not on chemo. Is very hard trust docs.
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Hope...yes it can be hard at times to trust our Doctors. If you are worried about not doing chemo, maybe get a second opinion. You do have a right to that! My previous ONC asked me if I wanted to wait a few months before starting Chemo, for the quality of life without the issue of Chemo. He didn't think there was a big hurry to start it. At the time I was considering changing ONC and did change to one that my daughter knows from the hospital where she works. She was with me on starting chemo as soon as possible. She also chose to start me on Taxol which was different than the previous ONC had planned. Of course the question comes into play...which ONC is right. Only God knows that answer but I feel I am on the right course.
Lauralind CONGRATS on the 6 lbs lost. Wish I could loose a few!!! And yes BOO to the hair loss. But the way I look at it....I never have a bad hair day with my wig!
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Well the list for mets isn't that long and its a matter of finding something that works for as long as it can. But even though I was disappointed I didn't get a chemo holiday after reaching NED, I was also scared to go off chemo. I wouldn't hesitate to get a second opinion if it was something I was really nervous about.
Weight loss is mostly from finally getting off steroids and getting rid of some fluid. I have about 50 to lose to this is a drop in the bucket !! My onc said well we did this to you, you didn't, But that really doesn't make any difference when Im trying to dress myself every morning !
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