De Novo Stage IV
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jobibo…thanks!
I guess that you have liver mets? When my liver was really filled with mets, I had no pain. But once I started on Gemzar & Herceptin, I did have some pains. My onc told me that meant that the chemo was working…and he was right!
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kbl..thanks!
I hated Faslodex and had it along with Kadcyla. That really could be the problem with your UTI's since we are told to drink a ton of water to flush the stuff out. So it might be settling in your bladder.
While on Faslodex, I developed severe lower left back spasms. Nothing worked, PT, chiropractor, or injections. Finally, my onc said that I could quit Faslodex since even Kadcyla wasn't working on my chest nodes anyway. My back spasms continued on for years and I can now finally bend over without getting severe pain that can last for hours.
Apparently, Faslodex is now in a pill form, so you might want to try those.
I will continue on with Herceptin as long as I can. What is weird, is that I am now Her2- somatic, so I am wondering if Herceptin is even working.
I am also on Xeloda.
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@kbl I haven’t been told to take anything beforehand for the zometa, but maybe my onc will tell me more when I see her tomorrow. One nurse told me it’s usually pretty well tolerated but saw a few people say first time felt like flu like symptoms. How was it for you?
@denny123 Yep I have liver mets. The biggest one was 10 cm I still can’t believe I had no idea at diagnosis! That’s great to hear the pain you had with it meant treatment was working, I’m hoping for the same.
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kbl - Like Jobbibo, I too would like to know what you took before your Zometa infusion. I am supposed to start that too later this month or next month. I've never heard about taking anything beforehand. Thanks!
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@jobbibo and Threetree, I will admit my first time was pretty hellish. I was in bed for three days feeling like every bone was going to break. The things I know are take Tylenol before, Claritin a few days prior and after. I’ve been on them since 2020.
@denny123 The new pill form wants you to have an ESR1 mutation, which I haven’t been tested for. Having been on the Faslodex for 22 months, I’m surprised I’ve been getting the UTIs. I am prone to them, but I always knew what caused them. These are outside of the norm. I appreciate you reminding me to drink lots of water all the time. I always have a bottle in front of me but don’t always sip regularly. I’m glad the pain in your back has gotten better. I’m not sure what happens when you have HER2 somatic. I haven’t had mine tested in a long time.
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Kbl - Thanks so much for the info. I'm especially dreading the first round, especially, and trying to plan it for a time when I can take a few days to feel awful if necessary. My oncologist doesn't really want to hear me talk about what if I have a bad reaction. She claims it is rare and that most people do fine and that I'm excessively anxious, etc. Well I've read on here where the experience really runs the gamut; from no real reaction at all, to days of fever and terrible flu like symptoms, and not being able to get out of bed. I imagine I'll be somewhere in between the two extremes, but as I try to tell the oncologist, I hope for the best, but have to plan for the worst. She just doesn't seem to understand that. She seems to think I should only approach this with the idea that it will all go well.
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Threetree, I like your philosophy. We have to prepare in case it happens. I’m grateful it was only the first time, which is the case for most.
One other thing. Ask them to infuse it slower than they normally would. I also believe I got a bag of fluid after the first one as well. Ask for at least 45 minutes instead of the usual time.0 -
Kbl - Once again, thanks for all the tips you've given us!
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@threetree, any time. I remember how it was before the first infusion, trying to get as much information as I could to be prepared.
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threetree-I used to panic too, when starting a new treatment. After my dx in 2002, when I was told that I had to do A/C, I panicked since my friend was so sick on it that she couldn't get out of bed. And I had to work!
Turns out that I was okay.
Same with Xeloda-I bought a big bottle of Immodium since most ladies have diarrhea. But I never used it since I am constipated.
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Denny123 - I understand the panic for sure. I don't know that it is so wrong, as some think. Some do get these terrible side effects, they are scary, and you have no way of knowing if you will be the one - even if rare; it's "somebody".
AC was no fun at all and I was up and down in and out of bed sort of like an hour in bed and an hour up, and then the same all over again. I could not have worked though, so kudos to you for that. I also heard the horrible big D stories about Verzenio, and went out and bought lots of Immodium before I started it. I also contemplated buying a package of depends, but figured I'd wait on that. Turned out that they also gave me Immodium to take home when I started the Verzenio, so I hadn't needed to buy any. Turns out, I've have been very fortunate and didn't get the D problem and haven't needed any of the stuff I got to be prepared with, but I have no regrets whatsoever about having considered all of that ahead of time. I live alone and can't just ask "hubby" to go get things for me, etc. (wish I could!). I didn't know Xeloda caused diarrhea. I have only hear about the bad hand/foot syndrome. I'll file that piece of information away too now for possibe future need.
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threetree…I am divorced and live alone too. I used to be a computer programmer but after my divorce, I need more of an income. So I started a cleaning service.
It definitely wasn't easy to clean 2 houses a day through 7 surgeries plus chemo. But I had no choice.
With Xeloda, after 2 years of badly infected toenails and fingernails, along with insane burning, I realized that since I was eating too many food with high folic acid, that was the problem. Something also to remember. So I avoid spinach, broccoli, avocados, etc. for a major difference.
And with Xeldoa I just take Miralax and 200 mg of stool softeners every evening, and it works well. I would go nuts with the big D.
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kbl….I told my nurse that I didn't want to quit Herceptin and she told me that I won't have to. They can even do pre-meds if needed.
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Not specifically cancer related. We are packing up our old house. We moved in the beginning of the year, but our daughter was staying in our house until she moved, which was the beginning of July. May I say this is not fun. I’ve been married 39 years, and our whole entire marriage we were in this house. We are trying to spruce it up just a little so we can get what we want for it. Blahhhhh!!!
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@kbl Best of luck getting the house ready to sell! I can imagine that’s not fun, so much work goes into that. I bet there’s a ton of memories there too! Before getting diagnosed my husband and I were talking about moving into a newer home. Now I doubt I’ll be working, at least the high level job I was doing (on short term disability for now) so don’t think that’s on the table anymore haha. Maybe once I get on to maintenance the process of moving wouldn’t sound so exhausting.
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KBL-I can't imagine packing up this house we have lived in for 37 years- but, I did it with my mom and dad when they passed and it was quite a job and at times quite emotional. I hope you have plenty of help and Suport and many new happy memories in your new house.
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kbl-good luck and I hope that it goes well. I can't imagine ever moving, so I am here to stay. This house was built 45 years ago.
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Thank you all. It does have a lot of memories, but I will take them with me. The house we moved to we had built in 2016 on ten acres we’ve owned since I was pregnant for my daughter 33 years ago. We decided to build the house before we retired, and I’m so glad we did. We already have that one stocked, so we don’t need two of everything. The hardest part has been tossing the artwork from when my daughter was in preschool. Lol.
I also have way too many VHS tapes of when she was little that no one will ever watch. I’ve digitized a few of them myself, but that is quite a task. Now you can just do a short blip with your phone and have it stored forever.
Jobbibo, sorry you can’t move to a newer home right now. I hope you can rethink it out when things calm down for you.1 -
kbl….I am right there with you. I will keep the artwork and my daughter can decide what to do with it. I also have artwork, etc from my daughter who passed away almost 6 years ago.
And I just can't part with it.
And when my daughters were in dance recitals, I have the old Bell & Howell cameras 3 minute reels, and then the VHS tapes…. from 16 years of dancing and vacations. I have never had them transferred, and still can't bear to watch my departed daughter anyway.
When my daughter gets my house, I will let her deal with everything.
I sell stuff online, so I have been trying to sell my glassware collections, etc.
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@denny123, I can’t even imagine losing a child. I’m so sorry. I know letting anything go would cause that much more heartache.
I kept the outfit that my daughter came home in, her little beanie cap, her feet print, and her blanket that they wrapped her like a papoose in.
We have many recital tapes as well. Gymnastics, CrossFit. Ugh.I wish I sold things online. I just give it away. My next-door neighbor has been pinged more times in two days. I wish she would stop saying no.
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kbl…thanks for the kind words.
I started to sell online 17 years ago. It keeps me busy full-time, which is what I prefer. I am not one to just sit around and be bored.
And it does help to pay my bills, since $1,116 a month SS sure doesn't cover them!
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Hi Ladies, I was diagnosed de nova in August 2012. I was 58. I remember finding a lump in my breast Nov 2011 and then dismissing it as I have dense breasts, 'lumpy' according to my GP, and I have a mammogram annually. There was a lot of stress in my life, my son was very anxious and I was very worried about him. I was a healthy person though I had had a bad fall on the mountains the summer of 2011 and my back was giving me a lot of pain. My GP examined me and referred me to a physio. Pain continued and GP prescribed painkillers and another physio. My husband massaged my back and said he could feel a lump on my spine. Physio also remarked on lump but GP had seen it so I assumed it wasn't dangerous. Pain got so bad that I couldn't sit at my desk for any prolonged length of time, I had to be helped up from sofa, chairs etc. Back to GP who decided that lump was a herniated disc and sent me for an MRI. I had asked at a couple of appointments about my breasts and this time she referred me to the breast clinic for a check-up though she assured me that my breasts were just lumpy and I had no need to worry.
I sensed something was up at the MRI clinic as the technicians took forever doing the scan, asking me if I had someone to drive me home and of course they had to help me up and off the table. I confidently assured them I knew I had a herniated disc and I was driving myself home. I had an appointment at the Breast Clinic the following Monday afternoon so I took a half day off work. While the nurses were doing an ultrasound they asked if I ever had an MRI done so I gave them permission to access it. Then I was introduced to a breast surgeon who brought me into his rooms and asked if my husband was with me. When I said I was on my own he told me to call dh and ask him to come to the hospital. I was sent to wait for him. Eventually he arrived and we were told that I had breast cancer and that they wanted to admit me to the hospital immediately. I insisted on going home as I wanted to talk to my sons and to pack my bag. I said I'd be in the following morning. We had no comprehension of my dx. Next morning I admitted myself to the hospital and all the scans and tests started. I was ignorant of cancer, I didn't understand when they said my cancer was stage 4. I thought that meant stage 1 was the worst. I also thought that people recovered from cancer nowadays albeit that they had to endure some very nasty drugs and maybe have mastectomies
I spent the next 6 weeks in hospital and I never went back to work again, never said goodbye to colleagues. My life as I knew it stopped. I was so shocked and so frightened and I felt so alone. I cried and cried. DH went into a tailspin. I struggled to get my head around it. My sons were great but we were all stunned. I thought of all the sh** times I'd been through and now this happens. I felt devastated and angry and terrified and so worried about my sons. I honestly do not know how younger women and mothers cope and get themselves up every day. It is just an awful,, horrible disease
Apologies for being so long x
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@aoibheann, welcome. I’m so glad you found us. So you’re at 11 years. How are you doing now?
I’m sorry that you had to find out the way you did. Doctors can be so dismissive. And to have to give up work instantly is so very hard.
Thank you for sharing your story. If you’re ever interested, there are Zoom meetings with members of the forum. It’s a place to talk and also ask questions.
KBL (Kris)
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@aoibheann—I am so sorry that you had to go through all of that. So many balls were dropped there. How are you feeling now?
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aoibheann, it is good to have you here. I think de novo stage IV is a category of people who's stories are pretty similar - life suddenly stops. I am a husband of a wife who was diagnosed at 33 with extensive liver mets. Our little boy was 2.5 years old at that time. Crazy… even now, after so many years, my mind rejects to remember everything what was happening - so many sleepless nights, tears, and thoughts that our life just started but is about to end, and my son growing up without even remembering his mother… What an unforgivable disease:/ How are you right now?
Saulius
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aoibheann welcome! Sounds like you’ve been through so much. You’ve been at this for quite a while, how are you doing now?
I’m scheduled to get my first initial scans since starting treatment on August 7th. The scanxiety is already hitting hard, hoping things are going well. I see my oncologist the day after so I’m glad I won’t have to wait long to have her explain the results to me.
I am feeling pretty optimistic for now because I finally found out the results of my Signatera test. I know it’s a newer test and don’t see a lot of people talk about it but my onc doesn’t do the tumor marker tests I see talked about more often. My baseline was 2580 and the blood test I did about 3 weeks ago is down to 12.8. I honestly couldn’t believe it dropped that dramatically so fast, neither could my oncologist. Took another blood test Tuesday for it so hoping it goes down even more, the goal is for it to come back negative. I can definitely still feel my breast tumor although it is much smaller but I’m mainly nervous to see how my extensive liver mets have reacted to treatment so far.
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