How are people with liver mets doing?
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Woodyb and springwatch....I am so happy and thankful that you had good scan results! Many praises and hallelujahs! Hoping that those waiting to hear results and/ or having scans soon will also get good news.
Just had treatment #12 on Wed of taxotere and herceptin. Have been on the couch most of the day. I get such a buzzy headed feeling that usually lasts through Sunday. Feeling a bit short of breath today also......not too bad if I just take it easy....but that scares me a little. I will be getting another echo on Feb 10. Hoping my numbers haven't gone lower. Since they stopped the perjeta, I am getting anxious that they may decide to stop the herceptin too.
Many prayers for those who are enduring hard treatments..side effects......progression...grrrr, how I hate that word! Even in my chemo brained and buzzy headed state.....I can lay here and pray for you all. Many thoughts go out to all of you tonight. Hugs and prayers and love to all!
judy
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Jaytee...I used to feel the same way on taxotere (w/cytoxen & herc)...I'd have it on Fri & by Tues, finally felt normal...glad you know to take it easy. How many more tx do you have...has there been that discussion? Hope your heart test is good & herceptin stays in place! Prayers for you, always!
Helen...I so want to swim...just need to find a place! A body of water is pure relaxation to me...even swimming laps, so hope you can get back into the routine!
Can't remember who mentioned Nancyh having been on Halaven...but in my mind, she is the energizer bunny, a rock star! She's paved the way for many of us & thankfully, helps when we need it. That's one reason I know you'll be just fine w/brain surgery, Leftfoot
"Springwatch"...I know why you have your name....your description of the coming of spring makes me excited!!! Our Pacific NW robins are very different...big guys...lotsa healthy worms
. Do you know the song "Robin in the Rain" by Raffi? I've sung it 4 million times to 4 grandchildren. It's my favorite & a sure fire sleep inducer!Have a blessed weekend, Friends! I know there are New Englanders out there (aka Patriot fans...I used to like them when Drew Bledsoe, my WSU COUG, was quarterback), but hoping my Seahawks win Super Bowl 49! We love our guys
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Thanks Ronniekay......no discussion of how many treatments left as yet, we are scanning after every third treatment and going from there. The treatments are working but it sure is taking a toll on me. I don't think she wants to change anything unless it stops working. Enjoy the big game on Sunday! Hope your team wins!
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My Ct of my liver was good. No evidence of cancer or at least no changes since the previous scans. That is a huge relief. It means I can stay on the Xeloda and Tykerb regimen I am on and that this course of treatment is keeping my cancer at bay. So nothing other than the brain surgery to get rid of my original metastatic site.
Thank you for your thoughts and prayers
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leftfootforward - great news! Thank You, Lord!
:-) Penny
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Wow! I haven't been on in a 10 days and so much news! Thankfully, much of it has been good! :0)
Woody - WOOHOO!!!!!!!!!!!!!!!!!!!!! I am so happy for you!! You've become a wonderful friend on this board and I am so thankful to have "met" you! Doing the dance of joy and praising God for your great news!!
Congrats to to Leftfoot and SpringWatch on your good scan results!!!
RonnieKay - did you have your scan on the 27th? Any results? I am on Navelbine also and my first scan had great news of shrinkage. Will have next scan on the 20th and get the results on the 23rd. Hoping it's still working as I have gone from 3on/1off to 2on/2off.
Ella - Welcome to our group...from your posts it appears you have a great sense of humor and a good spirit. Both will serve you well through this fun little battle we are all engaged in.
Penny - I need to be on here more often - I find that I miss your post! Your prayers are strong and constant and we all need them. My own prayers go out to all of you!
Love and hugs to all!
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Jaytee,
Thank you so much for you warm and genuine happiness for me. I hope soon we will hear good news from your side.
I have a healthy heart , but when i started taxol/hercept/ perjeta , i too run out of breath and get tired more often. I noticed it distresses my breathing for a while then after a week i am ok. I had a heart ultrasound 10 days ago and all seemed fine , and i had my lings checked also again all seems fine. I just get a very dry nose after the treatment and feel dried mucus in my respiratory tract it seems to hinder my breathing.
So just take it easy when you feel like this and don't think that it is always related to the heart but to be on the safe sode inform your MO. keep us posted. Love and prayers as always.
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Chichiiiiiiii,
I was wondering about you you haven't posted for a while, i am glad to see you are alright and i hope on the 20th you annouce wonderful results !!!
I am so happy to have "met" you all on this board and feel so blessed by your presence and constent support and most of all by your spirits and wonderful hearts. I hope we all have a "complete response moment" so we can all do the happy dance.
However , there has been some pretty good news on this board lately, like springwatch, leftfoot , RonnieKay, Penny and i hope the trend continue to join all the rest .
Wating for you good results Chichi and i will dance till dawn
))) Love and prayers to all !!! Thanks be to God !
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Hi, everybody. I started a new thread about this, but thought I'd ask my liver sisters for your input as well. Last month when they did the Y90 on my right lobe, all went well until recover, when I had to lie flat on my back for four hours. This is done to give the arterial wound a chance to clot over. The pain was worse than childbirth. When I met with the NP to schedule the other lobe I told her about it and she suggested asking the staff on duty for the procedure for sedation or pain meds for those four hours, but now I'm wondering if maybe muscle relaxers would work better? I've only needed muscle relaxers once in my life so I don't know that much about them. Opinions?
Thanks
Prayers for all,
Penny
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Hi everyone,
I was new to this forum several months ago but have not been on in a while. It is so refreshing to hear you all support each other! I have liver mets and had chest wall mets until three weeks ago when these were surgically removed.
I am not a surgical candidate on the liver due to the tumors being too close to the diaphragm. I thought I read on this forum a while ago about some of you having cryoablation on their liver tumors. I spoke with my medical oncologist about it and found an interventional radiologist at Barnes that does this procedure. The problem is my insurance won't cover it. Does anyone out there have and suggestions?
Incidently, my insurance originally approved the procedure and I was admitted to Barnes and was told right before the procedure that the insurance company made a mistake and the procedure was not covered. Does anyone out there have any comments or suggestions about that as well?
Prayers for all of us...
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I can't do this..anymore...I just was with a friend I dated 2 yrs ago..had so much fun..rode harley's and we loved each other. he Knew all about my cancer from a to z...he excepted me....we dated until I was dx in April ...2014...He asked me to come over to watch super bowl...with a new gf...he knew from 20 yrs back...I think since I couldn't make love to him ...he dump me...but still wanted me around ...god it so fucked up...it hurt...but it didn't...I am today still beautiful compared to her..but I want to be happy...why am i feeling so alone right now...I can't have sex...it DOSEN'T INTEREST ME...IS THAT MY FAULT...DO I LOOSE
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Penny, my MO gives me clonazepam aka Rivotril during a long procedure , it is a musclele relaxer , and anti anxiety, and it makes me go to sleep it helps me a lot. Ask about it . I do not see any reason why you should not take something to make you comfortable , you do not have to suffer. rivotril relaxed all my muscles . Hugs.
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Free
Freebird53,
If your friend did not stand by you during these tough times and did not appreciate you and had the guts to invite you over with his new girlfriend, well believe me than he is not worth it. It has nothing to do with you being beautiful or not , you are beautiful not being able to make love for ovbvious reason does not make you expandable. It is time you toss him aside and start your life again with someone who appreciates who you are not someone who sees people only physically. I know it is hurting you but believe me he is not worth it wanting you around is not something nice nor does it mean anything. You are not a second class citiizen and do not settle for that . Being sick does not makeyou kess valueble. Just remeber that.
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Freebird, I couldn't have said it any better than Woodylb eloquently put it. I'd honestly rather be alone during this battle then be with someone who is messing me up emotionally. That's the last thing you need. Hope you're feeling better today.
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Muscle cramping and magnesium. I read several of you experience muscle cramping and I just wanted to state that for me taking extra magnesium (400mg) daily has made the difference of tolerating femara or stopping femara. I know it is different for different people and for different treatments being taken, I am just throwing it out there.
God bless all of us!
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I"m sorry I was on a pitted pot last night....Darn Patriots...won...booo...At least I got the score right but in favor of the hawks...
Well today I woke up with another frame of mine...I need to focus on being alive...and not all the crap and drama that sometimes surround us...I have been dealing with this alone and I 'm going to stay dealing with this alone...along with my church and my Clinic...
Sorry for ratting last nite...just felt bad...for a minute...
love you all Carla
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Thanks for your encouraging words Woodyb. I am doing better now as far as the shortness of breath goes. Just had to get past those first few days after the infusion, I guess. Doesn't seem like it was as pronounced in my earlier treatments, but the effects seem to be cumulative. It's so easy to get distressed and let my mind go off in a negative direction. Going to try and go out for a little bit this afternoon!
Leftfoot.....celebrating with you on your good scan results! So happy to hear that. Chichimaine....lots of prayers for you for your scans on the 20th....we will all be thinking of you!
Freebird.....I agree with Woodyb and benjnate.....I am so sorry you felt so bad yesterday. Joining in with the others to give you a hug and hope you feel better today.
Penny.....I hope and pray that the procedure on your liver will go smoothly and much less painful than the first time. Sounds like muscle relaxers are the way to go especially if they can help you sleep through that recovery time on your back. Lots of prayers for you!
cbrogdon....welcome back....how are you doing since your surgery for the chest wall mets? Healing up well, I hope. I have not gotten to that place where we would be thinking of ablation yet. Does your insurance company give a reason as to why they won't cover it? How awful to think you had approval for a procedure and then on the day of it told it was a mistake...how cruel that was! Does the company have a procedure where you can challenge that decision...... though, just the process of doing that is so stressful too. Wonder if the interventional radiologists office would get involved and make the case for you? I have found that in my doctors offices there are some of the billing people who are much better at dealing with the insurance company than others. When my onc closed her local office, the lady in the billing office did not stay on....She was so good...I had never had to deal with the ins company, she handled everything.......I really miss her as there have been a few issues lately with some of the billings. I hope that you can get some help with that issue.....seems like there are a lot of people who get ablations done.....It's not considered experimental, is it? Praying for the best for you.
judy
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Another hug for you freebird! Rants are always okay.....sometimes you just have to get it out. It's good though that just another new day can give us a new perspective. Lots of love to you! Too bad about the game...I didn't originally care much who won....our team wasn't in it this year, but I was rooting for the Seahawks for Ronniekay....so was disappointed too! They were winning when I left the room to see a bit of Downton Abbey!
judy
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Woody & Laura .... couldn't agree with you more. I had 2 weeks of looking forward to starting a new life, following a divorce after 23 yr. of marriage, when I went for my annual mammo. Been dealing with the BC beast ever since. I can't imagine how much worse it would be if I had to deal with that toxic individual during all of this; I'm sure I wouldn't have lasted this long. Similar to Carla's ex boyfriend, my ex husband tried to throw his then girlfriend, now wife, at me, thinking it would bother me or make me jealous - NOT! I'm glad she took his attention away from me so I had less of his BS to deal with!!
Began Halaven today. Have slight headache and a little nausea, but generally o.k. There's a long list of meds that can't be taken with Halaven, like Zofran!! Ugh. So will see how this plays out!!
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Syrmom,
Good to know you had your first Halavan and still going strong , i hope it will give you excellent results. I am sorry you cannot use zofran but glad you got red of that excess weight you were carrying around for 23 years
) .Jaytee, it is good to go out from time to time just enough to change air and new ideas.
Freebird , it is ok to rant anytime you want and glad you are feeling better today.
Tomorrow i have a whole day of HPT. And xgeva i will be sleeping during the whole session dreaming of all of you getting good results
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Judy - Thank you for your kind response. Being turned down by the insurance company after I was approved was probably one of the worst days in my life as I honestly felt that they were playing "God" with my life. It frankly scared the hell out me to think I may not be able to get that type of treatment. The Dr.s office appealed the decision, per the insurance company protocol, and then I guess I may need to get a lawyer involved.
I hope you are feeling OK today and got out for a little while. Anything we can do to make ourselves feel better, even for a moment, is what we must do. Freebird, that includes you and all of us letting our feelings out if it makes us feel better.
Pleasant dreams and restful sleep everyone.
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cbrogdon,
I hope you issue with the insurance resolves quicly hopefully without lawyers whoch could take a while for them to get you response. I think it is very cruel from the insurance to refuse such a request, after you are not having a facial lifting. Keep us posted. Prayers and love.
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Radiofrequency Ablations on the liver for breast cancer mets is not experimental, but not done a lot. Maybe that's why you're having a hard time with the insurance coverage, cbrogdon. They've been doing them for years on colon and prostate cancer mets, and, of course, primary liver cancer. So many oncologists are opposed/unwilling to think outside the box that most of the time, bc patients with liver mets aren't even aware of the option. My first oncologist sort of waved her hand at me when I brought it up, along with chemoembolization, SBRT, and surgery, and said something to the effect that I shouldn't worry myself about all that. The oncologist I see now is much more open-minded and respects the fact that I research this stuff on my own. Doesn't make me feel like I'm trying to undermine her expertise, doesn't get offended, etc.
Prayers for all,
Penny
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Woodyb....rest easy during your treatment today.....thinking of you. I did get out and about for a while yesterday. It felt good and was a dry run for today when I have to go out. Have to go to the lab for a blood draw, then drive over to where dd goes to school and take her to a Dr appt. Dh can't go with me because of work, but I think I will be okay.
Syrmom....thinking of you too today...Hope the effects of the halaven are both minimal and manageable and most of all that it will be very effective!
cbrogdon...I hope that your appeal will come through. Thanks Penny for the info about cryoablation....I didn't think it was experimental, and I have read a lot of posts about women who have had some of these procedures during their course of treatment. If it can help get you to stable you would think that more oncologists would be open to these treatments. They are all different that's for sure, but sounds like you have got a good one!
cbrogdon, is your onc on board about the cryoablation? Seems like that would help in the appeal process. Insurance is such a touchy subject......we are so grateful to have it, but then having to deal with an insurance issue is overwhelming beyond belief! I always dread having to call them myself....it is so hard to get connected to a real person who can actually help with a specific problem. Can spend an hour or more on the phone and not get the answers you need. I am a bit concerned about my last treatment....it was on Jan 28. A few days after that I got a letter from the ins company saying that my next round of chemos had been approved.....from Jan 29 thru sometime in April. Will that one day difference cause them to deny that claim...I hope not. Since I started treatment last June, my treatments have always been on Wednesdays, every 3 weeks. There is also one treatment that the oncs office hasn't been paid for...all the other ones before and after that one have been paid. I need to find out what that is about and am dreading making that call. Another reason why I miss the lady who used to run their billing office....She would have had it sorted out by now.
Take care everyone.... thinking of you all and prayers and hugs all around!
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Jaytee,
Woooo i am so gla dyou went out even though a bit aprehensive about it. But look at you it did you some good. You will be fine driving do not worry, your body will tell you when you can't . I am so happy .
I had my session today and a blood test , TM still droping but slowly and my MO is very statsified , it is better for ot to drop slowly than a sudden drop. I slept like a baby during the whole time i am still a bit woozy . But feeling good. My MO is writing a paper for the medical journal about my case regarding the FISH test and the CISH test which are said to be as effective both , except my FISHcame back twice negative while IHc was positive Cish stated that i am extremely her 2+ . So are some women being cheated from the right treatment.? I would have been on palliative treatment if it was not for my her2 status changing. Thanks be to god.
Penny, my MO is like yours , he knows i do extensive research and he restpects that so we share information and decide to gether on the course of treatment.,so thumbs up to you my dear Penny and your doctor.
Syrmom, i hope your Halaven went well , and the SEs are acceptable but med tough on the cancer. Keep us posted . Prayers and big hugs.
Ronnie you are silent these days , i am sure busy woth margeaux lolll.
Love and prayers to all
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Redwolf - Thank you for the information. My oncologist made the referral for cryoablation therapy to begin with and he told me he was going to help the interventional radiologist with the appeal process. I still have not heard a thing yet. Did you get some pain relief after your Y90 procedure? Is that a relatively new procedure?
Jaytee - Sounds like to battle the insurance company as well. ONe thing we should be able to take out our plate for sure...
Pleasant thoughts...
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Oh yes...I've been in a deep depression over my beloved Seahawks....I get it, Freebird. Armchair quarterback that I am...it was the worst call ever & cost us the game...but realistically, we've always been the ones to get that amazing, unbelievable win & this time, the Patriots got it, so I'm looking forward to next year!!! Thanks for being a 12th woman Jaytee!!! I love Downton Abbey!
SyrMom & Woody & Jaytee...hope you're feeling good & ses will be gentle!
Chichi...I didn't have scans, onc thinks things are going well & so will wait a bit longer. In the meantime, getting ready for the eye dr again! They changed lenses again..and still not quite right. Hope your scans coming up are great! Two weeks on/off sounds great and my guess is you'll get the same good results! Do you have neulasta?
It makes me sad people have ins woes...it's criminal to me. I know one of our drs just got paid for a Sept visit but we don't really have to intervene. I said before, I'm sure going off chemo prompted a huge party (and maybe a raise) for my ins company! I asked my DH if our company would ever drop us cause I was costing too much. We've been on it since 1976. He said no..they can't...and then said, enough people die young so they don't use coverage...yeh, thanks honey! He had to gulp that one.
Off to dr...at least they keep changing my lenses for free
Woody...Margaux says hi! We went to library storytime today & she help hands w/another 1.5 year old...seriously melts my heart :-)
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cbrogdon - Y90 (Sir-sphere) embolization has been around a while, although its use to treat breast cancer mets is relatively new. My procedure is scheduled for Monday.
:-) Penny
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Penny, good luck on monday, may God be with and touch yoy with his healing hand. Hugs and prayers.
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Penny...I agree with Woody...God be with you...may this be another successful procedure that will heal and give you many, many years of joyful life!
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