How are people with liver mets doing?
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I wish I could get in sooner but it's wait until Thursday or go to ER. The way I see it is the surgeon who did the op. has the best chance of identifying what is causing the problem. I feel ok apart from the hip pain which is stopping me getting about. I am laid in bed at the moment as it seems that lying flat causes me fewer issues. I sat up all day yesterday and my backside really swelled which made moving difficult and very painful. Not so much swelling when I lie flat
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Hi Springwatch - I'm going through some crazy hip/thigh/knee pain too, 3 days after chemo. And I agree that lying flat gives the least amount of pain. Which is disappointing because I actually feel good otherwise and could get something done! In reading your post, I'm wondering if you are going through a lymphedema issue in your leg/butt since lymph nodes are in the groin area. Yesterday I took a Oxycodone and I would say it only decreased the discomfort by about 1/2 at most. For me, I really think it's the effects of the chemo giving me neuralgia, although there are tumors in my hips and upper thighs. Good Luck today Springwatch, I'll be thinking of you when I'm lying around playing endless games of Solitaire on my tablet....
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Well, I got through my woozy weekend after treatment...feeling a bit stronger today finally! I asked about the possibility of giving myself the neulasta shot on Fri and the nurse who was there gave me a look as if to say...'why would you want to do that?' I did not get a chance to talk to the Dr yet....so still don't know if that is a possibility. The nurse was asking about our local hospital...the county we live in only has one hospital and they stopped accepting our insurance last year. We saw a story in the paper a week ago or so that they are going to start taking some policies from our insurer again .......so if that happens and they get added onto our preferred provider list again I may be able to go over there to get the shot. Haven't heard any more about it though as yet. That would save us a lot of time and gas money!
Leah......I am so happy that you had such a good time at the seminar and with your darling grand daughters! Hoping all went well with the biopsy.
Thinking of everyone......springwatch, I surely hope that you will feel better soon. After being stuck in bed for most of the weekend, I know how badly you must want to be able to get up and around. I have a terrible memory of the time my Mother was sick back in the 90's. I was going over to pick her up and I was impatient with her that day and I think I made her feel bad. That memory just burns in my mind sometimes and I would give anything to change my reaction and words that day. Perhaps your dd was just having a bad day last week. Hope things will get better and you can get some relief from the pain.
Going to go get myself dressed...spent wayyyy too much time in my pajamas the last few days! Take care everyone.
judy
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Morning ladies, I agree with Jaytee that a lot of prayers are needed for us all right now, and I continue to pray for all of us. Right now, I am looking for information from anyone who has had the cryoablation procedure on their liver tumors, and what insurance company do you have. Actually any procedure other than chemotherapy for metastatic breast cancer as my incurance company, Healthlink, is telling me that they will only cover hormone and chemotherapy for me. I am getting ready for the second appeal process and also need any advice about the appeal process as well.0 -
Wow...what a Monday I had...In the ER again...I am under quarantine due to a Highly contagious intestinal infection called C Difficile Colitis...will it ever stop...my immune system is so low...that I'll catch anything...Well...start another new chemo Thursday...I hope they find something...Going to have a blood transfusion also...Another fun full week for me... Oh boy!! Have a great day...
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feeling determined. 0 -
Freebird - sorry to hear about your C-Diff. It is quite contagious and that's why they have you quarantined. Prayers thar it will improve very soon.
SpringWatch & Benjnate - hope you will both get some relief soon from the back/leg and hip pain. It's bad enough dealing with chemo SE's...surgical ones really stink! Prayers for pain relief and ability to get back up and around.
I got my scan results yesterday, Monday, and they were great! The tumors in my liver continue to shrink so the Navelbine is working!!! Woohoo!!!
On a bad note, it seems I may have gotten an overdose of Navelbine yesterday, because I had apparent artery spasms again and had heart rate go up to 150...another ride in the ambulance to the ER. They say my heart is fine and did not find any blood clots in lungs/chest, so we are pretty certain it is another reaction to the chemo. I had to stop taking Xeloda after three days because I had three "heart attacks". I talked with my onc's PA today and she is checking to see if dosage got messed up. Also a possibility that it was pushed too fast. I really want to stay on Navelbine because it is working so well on the liver mets. I will meet with onc on Monday before my next infustion...praying that they can just reduce the dosage a little and push it slower.
I did have good news regarding the FNA on my throid. The nodules are benign and I don't have to worry about them! Woohoo again!! lol
Woody - haven't seen you on for a couple of days. Hope all is well with you, my friend!
My best thoughts and prayers to all!
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freebird, I am so so sorry you are in hospital and feeling unwell. I hope the antibiotics will work quickly and you will be home again soon.
Chichi, congratulations on the great scan results!! Are you continuing with the navelbine?
We have fixed things here so I don't have to use the stairs until Thursday. I can't manage them and I am better off in bed. I can get up and use the toilet but even that is a struggle. I hope there is an easy solution. Sick of solitaire and day time tv
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Spring...counting the days til you can get an answer & hopefully a healing answer to the swelling/pain. Glad you were able to set things up so there's less walking..but I know it must be so frustrating...do you have HGTV? Mindless home decor...I love it!
Chichi...so happy navelbine is zapping those liver mets!!! I can't believe a center could make a mistake on infusion. My place does triple checks. I got it over 20 min...but don't remember dosage. Hope there's an answer & solution to that...sorry for scary moments
but thyroid news is fantastic!!Jaytee...woohoo for feeling better. I know the feeling of getting dressed being a big deal! I watch Grandaughter Mon & Tues & on chemo, I'd have her, chemo Wed, spend the rest of the week trying to play w/grandsons & pretty much be on the couch the rest of the time. Fatigue is a bugger & hard to accept...mentally! Did you ask about neulasta the day of chemo? Hoping the hospital closer will be able to give the shot!
Freebird...c-diff is serious stuff. Hope you're comfortable in quarantine...and they're taking good care of you. Is is localized? What are you starting Thursday? I pray your body heals quickly from the infection & treatment is kind to you. It's a good thing you'll be watched closely.
Cbrogdon....good luck on approval for the liver procedure...hoping someone has info for you!
Woody & Penny...in my mind...and everyone is in my prayers too.
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chichimaine......yay for good scan results and so glad to hear that the thyroid nodules were benign! Sorry you had to make that trip to the ER though. You have been through a lot finding that treatment that is working....seems like a little smooth sailing wouldn't be too much to ask! Keep hanging in there!
freebird....oh dear....on top of everything, now c-diff! I wish you well and hope the antibiotics will get it under control. Have the Drs said anything about taking a good probiotic to help restore the good flora to your digestive system? Sending many prayers your way.
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Leah...thinking of you & wondering about your biopsy...may be another day before results?
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freebird - so sorry to hear about the C-diff. You'll beat it in no time, have no fear.
chichi - Thank You, Lord! Great news on the scans!
Just catching up on the thread. Prayers for all.
:-) Penny
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Chemo went off without a hitch on Monday, thank goodness. Will make my third infusion of Halaven - so far easier to tolerate than Adriamycin! Thank goodness.
Update on the severe back pain/spasms. Good news was NO fracture, thank goodness!! I was scared out of my mind. So for pain, I'm now on baclofen (anti spasmodic) and allowed to take ibuprofen for 3 days only (600 mg x 3 a day) (lortab & Lidoderm patches did nothing) . It's finally kicking in & pain is decreased from 9.5 out of 10 to 8/10 & think it will be less tomorrow!! I agree, think the chemo makes us very vulnerable to muscle & nerve pain/spasms, etc. Now need to find help with vacuuming - not easy! I have 2 cats, so have to try and stay ahead of the shedding! However, been very fortunate to have 2 friends step up & drive me to appts & grocery store this week as I could not drive with the back spasms. So hang in there benjnate & springwatch, hope you get relief & answers real soon!!
Freebird - sorry to hear of your c-diff, good news is the meds they use to treat it are usually very effective in getting rid of it, so hang in there.
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C-diff is awful! Freebird, I hope it resolves quickly. I know there is someone else dealing with it now but I don't remember who (yeah, chemobrain).Just know my good wishes are wih both of you.
The liver biopsy was awful. Local anesthesia for that procedure is a joke.
Navelbine starts tomorrow. One of the women on the retreat has been on it for a few months - she said it was one of the easiest chemos she's been on, with the only SE being fatigue. Heck, all my txs have given me fatigue so I know I can deal with that. Right now I'm just dealing with a minor case of new-treatment-nervousness.
Leah
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Syrmom - have you tried "cleaning for a reason"? I have not tried it myself, but I've heard good things about it.
The website is http://www.cleaningforareason.org
:-) Penny
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Wow, so many updates in the past 24 hours, where to begin?? I'll start with the C-diff, Oh dear Freebird. There is a stage 4 woman, Anne Silberman, who writes a blog "But Doctor, I Hate Pink" A couple years she got C-diff and wrote in eloquent detail about it's effects. It actually freaked my out at the time and I really hope the antibiotics kick in quickly and you get some relief. BTW, she is currently in remission and doing great, so hang in there Freebird.
Glad Navelbine is treating you kindly Chici and hopefully you too Leah and Halavan for you SyrMom. Good to know that there is a better life after Adriamycin...have I mentioned how much I hate this stuff? LOL
Seems like everyone else is doing well, thinking of you all today.
Laura
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Penny, yes, unfortunately, no providers in my area , but thanks for the reminder - this could always change in the future.
Laura, yes, I don't miss Adria at all; however, after failing Adria & Doxil within couple of months of each other, leaves me with less options, so that part is scary. Just hope the Halaven kicks the liver mets out!!
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Oh no Leah...sorry about the biopsy
. I probably misled big time. I must've had better drugs. I did Navelnine 22 months...Sue did almost as long. It zapped the mets and was very tolerable for me. It's a bugger on white counts, which is prob the worst se, neulasta takes care of that. I did weekly for almost 6 mos...then 2 wks on, 1 off. It did the trick on my liver mets. Sometimes I'm nervous w/out it. Hope it treats you well & the mets-terribly!!!SyrMom...hope you are on the road to feeling stronger! Glad for no fracture...but I know how debilitating the spasms are. Did you read the article by the gal from Hollywood (acquaintance of Bestbird, passed recently), who said we don't fail treatment...treatment fails us. Go Halaven, go!
I'm going to the gp for my back. Just won't quit irritating me. Minor compared to others but I just want to hear IT'S not rearing it's ugly head again. Twenty-six months...longest since a dx in almost 6 years so...hoping.
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Hello ladies,
I have trying to catch up on your latest news...
Springwatch and Benjnate, i hope you soon get relief for the hip pain .
Jaytee, so hpy you're getting dressed up to get out and i hope you get an easy way to do the neulesta without much hassle xoxoxo:)).
Leah i hope Nevalbine will work for you as well as it did for others . Keep us posted on your biopsy results.
Chichi yayyyyyy a happy dance for you on your scan results !!! I hope nevalbine will continue to shrink those liver mets to oblivion. ((HUGS))
Penny i am glad you procedure went well and hope to hear good news soon God's willing.
Syrmom, happy your chemo is going smoothly and better than the others fingers crossed it will continue to do so with good results.
My thoughts and prayers are with you all .
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Well it's 3 days on antibotics 3 x a day...have been home...sorry I worried you all...they didn't want me in the hospital..due to how infectious it was...wouldn't be good on the OC floor...So I have no more diarrhea.. they pain level is low...it was very painful...I start Halaven...I believe they told me last week...but I had my CAT scan Monday...may have changed...see my NP tomorrow...OC is at a conference...but has been calling me every morning...He is so nice to me..and cares... and my NP she is totally awesome...They want me to finish the antibiotics before they start me on any probiotic...I have been eating Activa yogart...highly recommended...Let's just say I feel about 50% better..but still very tender in my lower abdominal area...and it doesn't help I have a colostomy too...
Thank you to all..I never can remember all your usernames/names...but you all know who you are and those that support me and reach out...I don't know what I would do with out you all...Love to all Carla
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Freebird,
I am glad you are feeling better, Ativia is very good for the colon and it puts back the good bacteria which you lost from the infection.and chemo. I always eat when i get in trouble. The funny thing is that my dictire requested the test fir C. Difficile for me this week and it came back negative. I hope you put this behind you soon so you can start your treatment. Paryers and hugs.
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OT. It's been so cold here. My husband is a supervisor with our county road department and has to be in at 4am because they're calling for MORE snow. I do not like summer, but right now I'm dreaming of spring. What's YOUR weather like?
- Penny
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I need to go back to hospital for an operation on my leg. The femoral rod in my leg is bent probably because the pin securing it at the top has sheared. Need a Mars mri first to be sure. The upshot is that the fracture site has opened and this is what is causing all the pain.
Catch up with everyone soon too tired and just took a handful of pain killers
Despite the couple of days delay I am glad I waited to see the top guy. He has offered an alternative operation which would remove most of my upper femur including the fracture site but he needs to consult with my onc to see if they think I would tolerate it with the chemo. The alternative op is a major, major hip revision. The first op is a straight forward replacement but runs the risk of it happening again
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Springwatch, what a dilemma! Major major op or smaller one with a possibility of eventual failure? Two not very pleasant possibiities.Well, if we want to talk about frustration today was it. I was supposed to start Navelbine - or so I thought. Onc left a note for secretarial staff to call me to delay until next week - he wanted more healing time from Monday's liver biopsy. Unfortunately instead of sec. staff seeing the note, a volunteer saw it and CLIPPED IT TO MY FILE. Yes, indeed, and then said file was put with all the other files of patients having chemo today. When I showed up the secretary pulled out my file and was baffled (to say the least) at the note being there. To complicate matters my onc has been out sick for a few days so they had to get him on the phone to ask what to do. I also was having mild pain/tenderness in my liver from the biopsy and didn't know if that was normal healing or a problem. So another onc, after consulting with my doc on the phone, examined me (normal healing, thank G-d) and said that if I really wanted to start the chemo today I could but it was both his opinion and my onc's tht waiting until next week was better. So I'll be starting next Wed instead. I did see the secretary speaking very seriously with the volunteer. That's a mistake she won't make again.
Biopsy results should be 2 weeks. Until then, I'm reading up on Herceptin.
Leah
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Springwatch,
I am so sorry you have to go yet for another op and like Leah said what a dilema between both op. I pray they choose the right one and pray and hope it would last.
Keep us posted , lots and lots of prayers heading your way.
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Leah,
Maybe it is for the best you didn't get your nevalbine specially after the biopsy. The thing is i didn't get my herecptin/perjeta neither this week. The onc called the night before and told me they did not deliver the perjeta and till now we are waiting. I am worried the protocol is broke and this is my fourth week. So hang in there and have a nice weekend.
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Leah, I think woody is right. An extra week for the biopsy to heal maybe a good idea. No excuse for what the volunteer did. It is very unsettling when your treatment plan is disrupted. I hope that the liver biopsy gives you new therapies to try.
Woody, you thought the hospital had a better ordering system. I will give them the benefit of the doubt, maybe it hasn't happened to them before.
I still need a lot of feedback on the alternative up. If we do proceed with it, it will completely remove the metastatic site in my femur. Both operations will give me s short chemo break which will be nice.
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penny, when is your weather due to become warmer? Sorry your dh is getting up do early when the rest of us are tucked up in bed.
I am the other side of the Atlantic. Our weather is very mild but wet. It is about 52f here.
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freebird, it sounds as if your antibiotics are working but you have a way to go yet.
I hope you continue healing and get back in your treatment plan.
Good luck with your scans on Monday
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Springwatch,
If either one of the two op will remove permentely your met tumor and gives you a break and you body can handle the either one of the op then yayyyy for you.
It is the first time this happens at the hospital , it is the distributor in the region who is messing up. Let't hope it will not happen again.
Penny, i am sorry you have a bad weather , but this year was crazy it is cold all over the world. In this part of the world where i reside we have a desert wheather, so basically we had few months of nice temps around 70 and now we climbed up to the 80's
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Springwatch & Leah - sorry about your dilemmas. Praying everything falls into place soon. It's hard to be "in limbo". Kind of like me right now. I'm only on P&H, and that's only because oncologist thinks I should be on something while we await the results from the SIR-Spheres procedures. Scan on 3/25. I know that I'm running out of options, as far as chemo is concerned.
Prayers for all,
Penny
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