How are people with liver mets doing?
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Syrmom - sorry about the news. Pray Halaven is approved and it works!
:-) Penny
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Woody - Thank You, Lord, for the great news! :-) Penny
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OMG!!! Syrmom....I am crying my eyes out of fear ...for you and now myself...I just started the "Red Devil" Adriamycin, had my second dose yesterday...and having a very rough day today from it... I can't hear this right now...I am screaming right now...I AM SO SCARED NOW...OH I don't know how you are dealing with this news...myself...I AM BALLING right now...
OH GOD...I DON'T KNOW HOW MUCH MORE TO I CAN TAKE....
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Carla, just because it didn't work for me doesn't mean it won't work for you - we're all different. Adriamycin is considered a very effective drug for breast cancer, as is taxol. Taxol worked wonders for me for 11 mo, Adria did not, so you just never know. Pls. hang in there. Yes, this sucks, but at least there's something else to try. Yes, I'm upset & afraid too. I was also off tx for over a month because of a toxic reaction to doxil, so another reason for my progression.
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Dear SyrMom,
You are AWESOME!! my hat is off for your courage and the way you are trying to reassure Carla. This is why I am here, to be able to meet a woman like you. I am praying very hard for you and hope I could make it easier for you.
Carla hang on there, stay positive, IMAGINE how those drugs go through your body and clean it from any C, just picture it, try to do it every night in bed and specially during the treatment. VERY IMPORTANT.
Woody, so happy for you, so so so happy. I just met you all, but feel so blessed.
Good night
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SyrMom...you are a warrior & a strong one (I know it sucks to have to be strong...but it's a good thing!). I pray the next drug will work...and you will continue that spirit & courage! Carla...the courage that comes through is from the desire to live...you have that, you do, and you can do this.
Woody...I have tears of joy and relief for you. Thinking of the testing you went through...in various countries, uncertainty in txt...now, the very best news you could hear...it's overwhelming & wonderful. Thanks be to God...
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Ella thank you for you joy and welcome among us , you will see how much these ladies have courage, love and compassion to give to the entire world , they are amazing.
Syrmom your courage is commandanle and your will to live is even more so , as always you will come out of ot a victor.
Ronnie your joy is overwhelming and your kindness touches my heart i am truly blessed having you and the others pray for me as i pray for you all. Love and hugs to all ! May you all be touched by the love and grace of God and feel his warmth and live his wonders.
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freebird53 - Syrmom is right. All chemos work differently on everyone. Going into it, there's no reason to think adriamycin won't work for you. One day at a time. Let's assume it's working until we're told otherwise. There are tons of chemos and cocktails out there. Coming here to vent your fears is a good thing to do - we're here for you. We've all been there. I hope you feel better soon.
Prayers for you and yours,
Penny
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Hi everyone. I don't post very often but I visit the site everyday. I take courage from the support and hope from all your prayers.
Syrmom. I had progression in liver in November after a chemo break of 4 months. I have just finished my 4th cycle of Halaven. For me the fatigue has been the worst SE. I have not had any signs of neuropathy yet and I have not lost my hair completely. I have a mans haircut but it is growing back quickly. I've had a ct scan but I won't get results until 17th Feb. Rest is very important and the need to keep bloods good. Plenty of dark green veg and high vitamin c fruits like persimmon and kiwi.
Hope all goes well for you. My thoughts and prayers are with everyone on this gruelling journey.
Cx Helen
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Woody, I am DELIGHTED to hear your good news!
I hope new tx work for all of us.
I had my PET/CT yesterday, answers in about a week. I'm trying to pretend I'm not worried. It's not working.
Leah
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Leah thank you so so much, i hope you all follow suit. I have been waiting for you to post your results, i truly hope they are not as bad as you think or fear. But to tell you the truth i was worried about mine till the last minute nothing worked to keep the worry away. I hope you post good news very soon and remember there still a lot of cocktails out there If and i repeat if there is something, one will be the right one for you. I will keep praying for good results for you and wait for your post , fingers crossed. Hugs.
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Thank you very much for all your support & prayers, I appreciate it very much. Helen, thank you for posting regarding Halaven, I'm trying to learn all I can b4 it starts. This is what I usually do in order to try and manage the side effects.
The one side effect from who know what that no one has been addressing despite my reporting/complaining is new onset of muscle spasms, anywhere, anytime. Very painful. My calcium/Mag levels are fine & no other electrolytes are off. RO said might be bone marrow kicking in, Onc didn't address, said nothing. Anyone out there experience this & if so, what was it and how did you address it?
Woody, didn't mean to ignore you - I'm very happy for you. Are you off chemo now or are you continuing with the chemos you've been on?
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Syrmom, Carla, mutherflush, I"m thinking of you and hope the chemos work on the cancer with a vengeance and leave you doing well! Wish I could give you each a big hug and a few moments of calm and an infusion of "Zest for Life" or something. And I agree, IMAGINING the drugs getting to all the right places might help. One day, one hour, one minute--look to the beauty that is life, however much of it we get.
Syrmom, I also have muscle cramps which started during Taxotere + H&P and have continued with the H&P. Can be feet, calves, hamstrings, arms, between my jawbones, stomach and are alleviated by vigorously stretching the affected muscle but a slight movement can bring it back. Electrolytes, all blood work is good. Taking calcium/Mag doesn't help, exercise doesn't seem to influence it, can happen anytime. So I can't say I've figured it out at all. None of the docs or PAs seem to know what drugs it's from or how to treat it. The Physiatrist just gave me gabipentin in the hope it will help with the neuropathy and just in case it helps with muscle cramps. I'll let you know if it helps. He also sent me to PT thinking that better posture and movement might help.
anyone else on Gabepentin for neuropathy?
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Syrmom , i never had any doubts that you forgot about me. But you have enough on your plate right now and I am totally concerned about you. I hope halaven will work for you better than taxol did and a lot of people got good results on it. You are so strong encouraging everyone else that in it self deserves a lot of respect. You know as well as me that each chemo works differently on each individual, so hoefully tHis one will be the one to put you back on track. I will pray for you Carla and Mutherflush.
I had spasm at my first dx with decetaxel and neuropathy my MO advised easy walks which did help , also i had easy relaxing massages to help the blood circulate better these helped a lot too. Hugs.
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Hi everyone,
So much reading and catching up to do after just a couple of days.
Penny, I am so sorry that the Adriamycin did not work. I hope you get approval to start Halaven soon. There is a website, www.halaven.com, which is owned by the manufacturers of this drug and has a lot of useful information if you want to take a look. I have no experience of this chemo so I am afraid I cannot be of much help. Good luck with the radioactive spheres on Feb 9. I am praying that they do a good job on your liver mets.
Carla, Each of our cancers is unique to us. The classifications the oncologists give to our cancers is very broad and if we were able to look deep into the genetic profile of each of our cancers we would be able to see how they all differ. Just because someone does not respond to a particular chemo does not mean that it won't work for you. And if it doesn't, there are plenty more to try. You will find one that works and Adriamycin may be it.
Helen, Your scan results belong to you as much as they do to your medical team. You are entitled to ask for a copy. Your chemo nurse or breast care nurse will be able to print off a copy, if you can't wait until the 17th Feb. The only thing I would add is that the radiologist's report can take some effort to interpret. Things that look alarming on first sight may be nothing to worry about.
Leah, I hope that your scan results are better than stable. I am keeping you in my thoughts.
Woody, Congratulations on your great results. WOW and I do mean WOW! your news is wonderful.
How much of the 2 to 2½ hrs you mentioned for the PET scan is actually spent in the scanner?
I got my scan results today. Good news. Regression in soft tissue tumours. Reduction in activity at all sites, including bone. Last sentence of report reads, favourable response in all disease sites. I am carrying on with gem/carbo. The only fly in the ointment is my HB which is sliding away, leaving me a bit breathless and tired. Some muttering about another blood transfusion. WBC and neutrophils are holding up. In contrast, my platelets are up again so I am going back onto the daily aspirin until they come back down to normal. I am grateful that we have found a chemo that is working.
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Springwatch,
Thank you for your kind words:)) and i hope carbo/gemzar keep working for you and you keep getting good results on your scans. Of the 2, 21/2 hrs in PET SCAN 40 min there an IV glucose during which you get the nuclear injection , they make you wait 40 min, then about 30/40 min in scan but it is not bothersome, then afterwards they make you drink water and use the WC , then you wait for the radiologist to check if there is any retake of anything he did not like if all is well you leave.
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I only missed a day or so on these boards, but apparently I missed a lot. I've been sitting here staring out the window, watching the snow fall, and just not knowing what to say...I'm heartbroken for those of you who are scared and disappointed. This hand we've been dealt is truly just so hard at times. And yet I'm so relieved for those of you that got good news this week. I wish it could always be that way for all of us, but its just not the case. I hope the ones with good news get to enjoy it for a longlonglong time! I too, wish I could give each of you a big hug, but virtual hugs will have to do, along with many good wishes for good treatments, and little side effects!
Laura
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Oh gosh, what a day. Spend all day fighting the insurance. My doctor wants liver MRI, but of course insurance think I need CAT scan, just wonder if it was the other way around, they would push for MRI?! just saying... I don't want to bother you with all the glory details as I am sure you have been through this one way or another. Just for the laugh, imagine insurance receive a call from Barack Obama doctor asking for MRI approval and the clerk goes: "No-no, you dont need MRI, we think CAT scan will suffice..." Funnnny. Hope you are laughing with me
Can somebody tell me what is the difference?
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for those with muscle cramps- have they checked your potassium levels? I konw mine if very low due to the medicine and I have to make sure I eat some potassium rich foods. It has helped me some.
Thank you everyone for your updates. I am still a little preoccupied but want you to konw I am thinking about those of you who are changing treatment options and celebrating for those who have had good results.
I go to the oncologist tomorrow to discuss my upcoming brain surgery. I will also get my CT results for yesterday. Hoping that since she didn't call I get good news on that front. Then it is off to have multiple tests done so that I can have surgery in February.
God Bless everyone.
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MicheTheVanquisher - I tried Gabapentin for neuropathy. Didn't work. I take 100 mg Vitamin B6 per day, which seems to help.
springwatch - Thank You, Lord, for the great news! :-) Penny
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Spring...glad for good response!!! HAPPY!
Leftfoot...I'm agreeing that no news is good news...get that brain surgery outta the way & on to healing!!! We're behind you all the way...and that's from a very good right midfielder here-first place, over 30-south Puget Sound League (30 years ago!!!!). Go Girl!
SyrMom...OMG...thankfully my spasms stopped once Navelbine stopped. I don't have them on h/p. I literally would stand up from the couch & not be able to stretch my leg out. The pain was sometimes severe, most often irritating...so I'd just take deep breaths, talk to myself, saying it'd be over soon & wait for it to subside (I'm sure I looked crazy). I noticed it more after exerting myself...long or fast walks. It'd be in my hands if I tried to grip something. I noticed staying warm helped...keeping socks on. I was a mess swimming...cold water made my feet totally deformed. I'm sorry you're dealing with it...it's awful. I hope someone's got a good answer...cause all I did was commiserate...sorry.
Leah...it's ok to pretend not to worry...it may work in a few days...I hope! In the meantime, tons of good thoughts that all is much better than we can imagine. I want us all to have a Woody moment
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Thank you all for your responses. I get a tight feeling under ribs and since changing since changing from daily Iban to monthly Denusomub injections for bones I have really bad bone pain especially in my hips. Like you Ronniekay I find it difficult to stand. I know Halaven can give you bone pain so I will check with Onc at next visit.
Congratulations to all you ladies who have received good news and good luck to all you ladies starting out on nee treatments.
Lots of hugs. My prayers are with you all.
Helen
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Thank you everyone for celebrating my good news with me. My liver mets grew so quickly and to such a size when I was on Xeloda, aka cancer fertilizer, that I jokingly said to my onc I knew the new treatment was working because I feel so much better and am still here to say that. He agreed with me. To be honest, I was so bad at the end of Nov I knew in my heart if the gem/carbo didn't work we might not have enough time to try another chemo.
Laura, I am thinking of you. Watching the snow falling outside your window. I find that sometimes we are lost for words in the face of this illness. I also wish that sometimes those not dealing with MBC were lost for words, too, but that is another story. I am watching out for the early signs of spring from my window. We have had some frost and a bit of snow here but you can see that spring is on the way. When I was having my IV yesterday I was able to look out into a quadrangle where a cherry tree was breaking into a mass of pink flowers. My daffodils are coming up but still some way from flowering and the snow drops under my apple tree have been in bloom for some time. The blackbirds have paired up and the robin has been making frequent visits to the garden making sure that another male doesn't muscle in on his territory. Our robin is very different from yours, which is a much larger thrush-like bird. Our European robin is a small, very territorial little bird. It has been known to fight and kill a rival but I have never seen this. Usually, one of them backs down very quickly.
I miss the photos you took of your view down to Lake Champlain. Any chance we could see some more?
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Ellamilana,
I am sure you know that your insurance co. wants you to have the CT scan because it is cheaper. I came across this website:
http://www.diffen.com/difference/CT_Scan_vs_MRI
I have always had MRIs. This week was my 9th! I did have a couple of chest CT scans at the beginning but not since. As there is no ionizing radiation involved with the MRI, they can be repeated more frequently. Just as well as I have had a lot of radiotherapy this year. Obama's doctors probably wouldn't have a problem getting an MRI organised!
Leftfoot, I agree also. No news is good news. Especially if your onc normally phones you when things are not right. Good luck with the brain surgery. Don't focus on the up coming op. but focus on where you will be when it is behind you. Hopefully in a very good place.
SyrMom, I have neuropathy in both feet and get terrible cramps in these areas. My feet literally curl up sometimes and I have to leap up and walk around on them to get rid of the pain. I have not found anything that relieves the problem but can sympathise with what you are experiencing.
Helen, I get bad pain at the site of my bone mets after my ibandronate infusion. I had it yesterday and woke up at 2:45am because my sacrum felt as someone had hit me with a hammer. It was throbbing. If I am not due to take more pain killers I find putting a microwavable heat pad on the area helps. My onc seems unconcerned. Bone pain after the infusion is common, apparently. It happens every time I get it but it will disappear in a few days. Then, I just have my 'normal' bone pain.
Thanks again to everyone for your prayers and positive thoughts.
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Leftfoot ... hang in there & good luck with your surgery! Time to get that behind you. Pls let us know how you are doing.
Thanks to everyone for all the info & support. I conclude, based on knowing the lab values that would reflect a problem in this area are normal, the whole body muscle spasms are another side effect from chemo. You have described them well. They can hit anywhere or anytime, on the body, very strange. I get so frustrated when the providers give me a blank stare because they don't know & rather than say that, move on to something else!
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Forgot to mention, I begin Halaven on Monday.
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SyrMom, I really do hope and pray that you get a good run on Halaven. I was reading on the forums and noticed that nancyh got almost a full year on it according to her bio. She is now on taxotere.
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Springwatch, thanks for the link
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Thank you Springwatch. As I had not experienced bone pain for two years after diagnosis I was worried in case bone mets had started to go crazy. Now I know it's part of the course I will be able to cope.
I have been able to carry on with my twice weekly swims up until last infusion of Halaven. Hoping to be able to do so again. Not as mobile as I was this time last year and swimming is the only real excercise I get these days. Hoping to be able to go for short walks when weather picks up.
Well ladies afternoon nap beckons. Speak soon. X Helen
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Springwatch, yes, I noticed that too. I'm hoping for a long run with it, however, I've learned not to get my hopes up too much as I get so discouraged if it doesn't happen.
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