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has anyone changed chemo to a new one, then gone back to the original and side effects been different?
Mum was on xeloda but changed, side effects were unbearable. But the new one, navelbine, hasn't been as effective and mets in multiple places have progressed so doc is saying to go back to xeloda...worried...
Thanks lovely ladies for your thoughts xxx
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Hi Papillon, personally I have not gone back to a used chemo but I know many do, particularly if it was still working but the SE were terrible. It is known that taking a break can make the the SE either the same or lesser than originally felt so a break is often suggested.
I do hope that your mum has lesser SE should she decide to go back onto Xeloda.
Love n hugs. Chrissy
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Wow I missed a lot when not checking in for a short while. Best of news Kathec! Best of luck for you all and all your scans, etc.Cathy
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thanks,tryn2staycalm. im tryntostaycalm2!! im just mad cause i just got clinic notes back from that visit, and she said there was no lymphadenopathy!!!! i have nodes everywhere that are enlarged and swollen, even in my groin and neck. i am just so done with all of it.
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Awe Kath......there are times in this journey when we get hopping mad and way over it all........if only it were that easy. Sometimes it seems that our so called carers either are not listening to us or seem to discount what we are saying as well as ignoring symptoms that are as in their face as the nose on their face.
The bottom line is, if you are not happy change your carer to one who will care for you and listen to what you as the patient is saying..........or let your current carer know that you are not happy with their attitude toward you or what you have to say. Hoping things get sorted and you are listened to.
Sending big, warm ((((((hugs)))))). Chrissy
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thanks chrissyb. i know now i should have changed long ago, but i really did admire and like some of the carers there. i did see my onc today. he is one of the few who actually writes pretty good clinic notes. and he does listen. and he told me they dont even start to worry about nodes until they are at least 1 cm big. ok. i can deal with that. he said they are aware of them, and aware of my concern for them. but to let them worry for me. well thats harder for me to do, but i will try, because they do have an awful lot of people to take care of there. just last week my bs reminded me that treatment may cause menopause. i let her know i finished that 8 years ago.... those are the kinds of things that worry me, just because how could they possible remember ll our details like we do? but with so many of us, it must be hard so i guess i feel like i have to remind them, until i really do make myself stick out! but all of us so afflicted should all stick out! then i get mad at myself for being such a pain in the butt. anyway. i do get to start pt this week, because i have been losing range of motion in my shoulder, and it really hurts! so hopefully, i will learn how to move. femara's going alright!
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Kath thank goodness for your onc! At least he told you details rather than glossing over or not mentioning at all.......he has also given you some valuable information on when to start getting concerned over size of nodes.
They all say let them do the worrying for us but my come back is always 'if that's the case you can have the disease as well because that comment is impossible!' I have gotten some queer looks but sometimes stating your case strongly is what is needed........as you say, they are dealing with hundreds so cannot in all reality remember each and every one in detail.
Kath, the comment on the treatment possibly causing menopause is just something they tell everyone regardless if you have done with it or not........it is a warning that is set by the manufacturers and is reiterated by the docs so don't worry that it is an inane statement and not pertinent to you.
Good luck with your PT and hopefully you will get full motion going again soon and don't get mad at yourself for making sure that you are getting the best treatment all round.....you deserve it. Glad the Femara is going okay.
Love n hugs. Chrissy
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Need some advice. Had my last check-up with my oncologist June 13th. Chest x-ray and blood work was good. I've had some serious health concerns the past six weeks and trying to wait till October's check-up. Last night while walking to bed, I had extreme pelvic pain that caused me to stop, bend over and hang onto the rail. Took about a minute to get the courage to take another step, then pain hurt so bad. Waited for another minute and I crawled onto the bed. First time I ever felt afraid to be home alone. I've noticed that my bowel inconsistence has become a weekly issue for an entire night (can't make it the bathroom every 2 minutes) and nausea affects my stomach almost daily for about 30 minutes. I keep telling myself, "Probably have a virus and it will go away if I rest more." Guess, that it is easier to come up with my own conclusions. I'm thinking that I should call my doctor Monday and see if he can do a bone scan or ct scan to calm my worries. Any advice would surely help. Trying so hard to advocate for my health without being a burden. Any ideas for which tests that I should do? Many blessings...
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Hi kdkickapoo, really sorry that you are in such pain. I'm not sure where your pain is coming from, bowel or pelvis. If you think your pain is from the pelvis itself which I don't think it is, then a bone scan would be in order but I'm thinking your problem is more to do with your digestive system due to the nausea and loose bowels. I think a trip to your Primary care doc would be in order and ask for a referral to a gastroenterologist.
I know any pain we are in sends our minds to the dark side but in reality, there are more of the 'normal' things that we suffer from than we think. I sure hope that you get some answers and relief soon.
Love n hugs. Chrissy
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Good morning kdkickapoo,
You need to go to your doctor and get this checked out, especially as you are in pain. I wouldn't wait until your next check up in October.
It is easy to rush to the conclusion that these are the symptoms associated with a recurrence of your cancer but it is important to remember that we can all still get a whole range of illnesses and problems which have nothing to do with our cancer diagnosis. There are all sorts of things that can cause pelvic pain but only a medic will be able to give you an answer to what is causing your pain.
I hope your doctor can find the source of your problem soon and it turns out to be something which can be easily treated.
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Many thanks ladies. Going to see my primary doctor first on Monday. Hopefully, he'll refer back to the gastroenterologist. My worries have lifted. Yep, I was slowly slipping into an underwater current and struggling to keep positive. I am so thankful for the positive vibrations. Many blessings to you.....
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kd
I would suggest having a transvaginal ultrasound. My mother was having bowel incontenace and pelvic pain. The ultrasound revealed an abnormality on her ovary. When they did hystectomy it revealed pre cancerous cells. Having the other symptoms led her to finding this very early.
Hope everything is ok.
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Hi everyone,
I am TNBC, coming upon my two year anniversary of diagnosis in a couple of weeks. I am 19 months post chemo, 18 months post BMX, did radiation after BMX.
I had a chest cold over the 4th of July. Now I have a sometimes dry, sometimes slightly productive cough and i'm a bit short of breath. It feels irritated. No yellow or green mucous, so I don't at all think it's an infection. I am 46. I think the cold symptoms should have resolved by now and I'm concerned about lung mets. TNBC likes to go to lungs and brain.
I will call my onc, but any thoughts on this from Chrissy or others, especially those w/ experience with lung mets? Thanks.
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Shoppygirl, I have had both ovaries taken out two years ago due to excessive bleeding for a month. But, I still have my beautiful uterus. I will contact my gyn also. Many thanks for advice.
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placid, I don't have personal experience with TNBC or lung mets, but wondered if maybe the longer than usual time to get over your cold might have something to do with having had rads to the chest area not that long ago. Obviously you need to get it checked out, especially if your cough continues to linger on; but I can't help wondering if rads might have made your lungs more sensitive to whatever illness you had and/or slower to recover from irritation, and just wanted to share that possibility with you. (((Hugs))) and hoping your cough is just slow to clear vestiges of your recent cold. Deanna
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Hi Placid, whether you are TNBC or not we all get those worries going on in our heads if something hangs around a bit longer than we think it should. Most times the initial rounds of treatment, particularly radiation can do underlying damage to our lungs which makes the normal cold cough hang around longer than it should.
If you had a cold over the 4th July holiday it's been about four weeks since onset so I wouldn't be worrying just yet as it is possible that your lungs are still getting rid of the aftermath to that cold or have become sensitive and irritated by the pollen, dust etc due to your summer. I would however, keep a close eye what is happening and if it is no better or gets worse over the next three or four weeks, then I would call and make an appointment for a check up.
It's good to be aware of what's happening in our bodies but due to BC we seem to be on an even more heightened alert for things we perceive as abnormal and that's a good thing but we also have to be careful we don't throw things out of perspective. Always watch with a time limit in mind and then get it checked.
Love n hugs. Chrissy
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Deanna and Chrissy,
Thanks so much! Rads connection and/or summer air quality makes a lot of sense. I will keep an eye on it for a few weeks and see MO if it doesn't improve. Thanks again.
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Have not posted in years. Been 3 years since being diagnosed. My Primary keeps track of my tumor markers. Last month he said he noticed they are slowly rising. They were a 27 when diagnosed and now are a 37. Keeping a close eye on them. Banged my elbow last week. Now I am having horrible pain from my shoulder down to my elbow. Of course, I am thinking, could it be mets? Have not thought about this for a long time. Now, the worrying is back
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Hi Sue even though your markers are rising, the rise itself is marginal in the scheme of things. There are a couple of other things that can make them rise not just cancer. Internal inflammation of any kind including the inflammation that comes from arthritis and also any if you have an infection of some sort can effect them.
I'm glad your doc is keeping an eye on your markers but I'm sure if he were at all worried he would have indicated that to you. For yourself, take a deep breath and try not to borrow worry.
Ouch on the elbow and it sounds like you have hit the ulna nerve which can give you pain in the upper part of your arm.
Love n hugs. Chrissy
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Many thanks ladies! Seen my primary doctor today and she did a very thorough exam. Did several blood tests too. She is scheduling a CT pelvic next week. And if the tests come out good, she is referring me to gastroenterologist. Thanks for all your input because it has meant a lot to me.
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We check my Tumor markers.CA-15.3 Every quarterly and it stays in the range of 13 to 18 since last 2 years .and in march it was 16.8 and today it rose to 26.8 ( normal is below 31.2 ) though in normal range it has increased by 10 points in a quarter. .how significant is this ? Does it mean that cancer has returned ??plz guid
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Hi many, my guess is your onc is just watching what trend your markers are setting but right now I wouldn't be hitting the panic button.......as you say they are still well within the normal range. There are all sorts of things that can raise markers not just cancer.
Take a deep breath and try not to read too much into your numbers until you have had a chance to have a good talk with your onc.
Love n hugs. Chrissy
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So I'm having trouble wrapping my head around something my Onc said last week. I went in about 2 areas of concern. 1 small nodule that developed in my mastectomy scar and pain in the rib area on the same side. They were very quick to look at the nodule, Ultrasound was clear and they will check it again next month. The rib pain didn't seem to raise much concern, she said "we have time if it's mets, finding it now or later won't make any difference to your outcome." It's the second time since my diagnosis 3 1/2 years ago I've heard her make a comment like that about Mets. Everything I think I know about cancer is the earlier the better. Why isn't that true with Mets. If it was a bone met, wouldn't starting treatment sooner be better? I'm assuming once you have Mets it's already in your system but it seems to me if you let it continue to grow it would be harder to eradicate. If early intervention when you have mets doesn't change the outcome why do some people who discover they have mets with no symptoms start treatment for it. I'm clearly missing something here.
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Hi Dizzy, glad your onc is really checking out that nodule for you.
I notice that you are TN so your treatment options are for chemo only. Yes, you are right when you say you see women on these boards that are given treatment straight away but I think you will find that most of them are hormone positive and others who are TN have more extensive mets than just a small one to a single place.
Finding cancer early initially is going to give you the best outcome statistically but even then, there really is no cure just a better possibility of not seeing it return. Mets on the other hand, whether found early or not, eventually will lead to spread so treatment is only a means for slowing down the progression and giving us more time to live and enjoy life.
Your onc is right, there is plenty of time for treatment should your sore, painful rib turn out to have a met.
Hope this helped a little.
Love n hugs. Chrissy
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Thank-you for responding. I met a few ladies throughout my journey with BC but only one that was TN like me. She died 4 months after discovering her mets. They were everywhere by the time she was symptomatic. It just doesn't make sense to me to wait and see. But, I do trust my Onc for the most part, they have been keeping me going this long. It's sunny here today, I'll just go out, enjoy it and stop worrying about something that's out of my hands anyway. Thanks again for your input Chrissy. (hugs) back at ya.
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Dizzy as a IIIC girl I'm pretty sure your onc will be keeping a very close watch on things for you so should that pain persist she will do something to find out what it is and there is always the option for you to ask to have it investigated further. Trust in our team is all important as they literally have our lives in their hands.
Enjoy the sunshine while it lasts.
Love n hugs. Chrissy
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Dizzy I was basically told the same thing when they found two nodules in my lungs 2 years after my chemo. They said the outcome would not be different if it was mets which it did turn out to be. Another oncologist told me that yes that is the protocol to watch the suspicious spots or nodules first to see if there was any change.Hope this helps too.
Cathy
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I think I'm starting to make sense of the whole thing. Basically you don't need to take morphine for a minor headache. The first treatment for mets is the second best treatment available (because the best one didn't work), If you wait until you have symptoms that are affecting your quality of life, you get more milage out of the second best drug. When that stops working they try the next best and so on. There would be no point in wasting the second best drug on a minor problem. I'm actually starting to think I understand. Thanks again for your imput.
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Hello Ladies, first time posting on this thread, here's my story. I've had 14 mammograms since age 40, all showed dense breast tissue with no abnormalities noted. I'm 56 and in February I noticed a dimple on my breast while blow drying my hair. Long story short after breast and node biopsy I was given dx of ILC, Stage 2b, grade 1. Metastatic workup was negative. BS sent me to MO and I had 6 rounds of Cytoxan/Taxotere then 5 weeks later BMX, ALND and TE's on Aug 7. Path report came back last week and showed no active cells in breast but 10 of 11 nodes with still active cells and the report said tx ineffective, stage 3c. I will be seeing my BS on Monday and I'm going to a new MO on Tuesday (never bonded with the last one). So I'm thinking the next step is a PET scan (never had one) probably AI's and then to the RO the following week. I'm really hoping for no more chemo, in fact they'd have to be pretty convincing to talk me into it. I just wondered if any of you ladies can help me with what to ask. The mets workup was 6 months ago now and with the chemo having no effect on the nodes I just don't know, could it have spread while getting chemo in that time. All questions for the MO next week I know but I like to feel prepared and informed. Any thoughts? Thanks, and hugs and prayers to you all.
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Hi ladies, I have a couple questions.
I was diagnosed in March with stage 1a IDC. ER/PR+, HER-. Clear nodes and margins. Had LMX and SNB. I cannot take tamoxifen or the other drugs because of high stroke risk. According to Oncotype this puts my risk of recurrence around 25%. Because I have no family history my insurance will not cover BRCA testing, but my sister now has a first degree relative under 50 with BC so SHE can get tested! Ugh! Anyway, I just finished chemo and am scheduled for BMX and recon on Sept 12.
When trying to make a decision about BMX my surgeon reminded me that there is no guarantee I don't have mets somewhere in my body. All it takes as that one sneaky cell….
My question is, should I be asking for PET scan before putting myself through BMX? I mean, if there is mets somewhere (not likely but the possibility is still there) it would be pointless to do a BMX, right?
My other question: I'm curious how many of you had an original diagnosis similar to mine and later found yourselves at stage IV? I am not normally a paranoid person but cancer has certainly changed me. I cannot shake this feeling in the pit of my stomach that cancer is not done with me. Maybe its depression? I don't know. I just want it to go away.
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