If you are not Stage IV but have questions, you may post here
Comments
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Chrissy,
I was not attempting to debate just pointing out standard of care has changed over the years. Nevertheless, I removed my post.
You are a gem for starting and maintaining this thread!
Blessings,
Diana0 -
Wayne, congratulations on 17 years from stage 4 diagnosis for your wife and 50 years of marriage!
Hope I'll be able to follow in your wife's footsteps. I had chemo and surgery after my diagnosis and went into remission like your wife. My daughter was 7 then and if I can add another 17 years, that would be awesome. There may be no cure yet but remission or prolonging life without it counts for a lot and if a cure can be found in the interim, that would count for even more!
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Maybe my last post on this subject (wish to bore some no more). Since there is no cure for MBC, please, what, then is the purpose of chemo? Delays tumor growth? Or what? In Suzanne's case, chemo changes were numerous. "We'll try this..." Then a PET showing continued growth. Never a positive sign after a number of weeks of Chemo Nbr "n"! My trust in doctors has been stretched, too many money hungry infusion centers who have expensive scanners to pay for (cynical?). So Pls pardon my ignorance - just seems that too many go down the chemo path, knowing (?) that "it" does not provide a positive outcome. Simply stated: confused. And Thank you for your comments, pro & con.
Warm Wishes,
Wayne
Sarasota0 -
Dear Wayne,
Having been on chemo since 9/2010, my answer is that chemo gives the woman with MBC more time. Who knows what would happen if she does not take it? Some studies have answers, but we may be cynical about any of the data involving profit and pharmaceutical companies.
But if you take the mainstream advice, like me, you get stability or regression and you are sometimes very grateful for the drug that brought it. They have definitely made these chemos much more tolerable, so women can live with them longer. As I nurse, I took care of women getting chemo 25 years ago. Our job was to sedate them so they could sleep through most of the misery. They barfed and pee'd and barfed.
Now, we can get the chemo and waltz out of the clinic and have our good and bad days.
So, that's my answer; MORE TIME, AND WITH SOME CHEMOS, QUALITY TIME.
Best of luck.
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A-hem . . . what are "mets"?
Tks!
For those who celebrate, A Happy Easter.
Cold here in Sarasota, snow birds are shaking in their shorts and sandles.
Wayne0 -
Wayne, there are over ten different types of breast cancer, and there are lots of drugs to treat or manage it, but no way to really KNOW which (if any) will work for any single individual. And this is a very important concept: there is no way at this time to know which drug will work for which tumor, so it is a trial and error approach, usually starting with the least toxic so as to minimize side effects and keep the best quality of life possible for as long as possible.
So chemo is offered to try to slow the cancer down, reduce the amount of tumor that may be causing symptoms. Some women may have such a great response they are considered "no evidence of disease" whereas others will progress on every drug tried. As long as there is hope for extension of good quality of life, many women will trade the risks for those benefits. You will not see them in the infusion rooms if they got good results from chemo, but rather the women you see are either just getting started and wiling to trade the risks for benefits, or they have not responded to one and are still hoping for benefit, or they are personally tolerating the chemo to extend life. Length of life is very important for some women, especially those with children and other life events they want to be around for, and chemo offers that. And besides, there is always the chance it will lead to prolonged remission. For others, quality of life is more important than length of life, and chemo in those cases can actually reduce some symptoms, such as bone pain, liver dysfunction, etc., but if it causes more symptoms than it relieves, a woman can opt out. In fact, any patient can decline chemo at any stage if she considers it more harmful than helpful. But you are right, and I think most women with stage IV understand this - chemo is not going to cure cancer.
I hope this helps you understand the differences and complexities involved with the "WHY?" Of chemo for stage IV. Congratulations on your anniversary!0 -
Rowan, back to the SOB and cardiac issues. My DH has numerous issues, a 4way bypass and numerous stents over the last 13 years. Shortness of breath for him was red flag of an artery clogging. I'd tend to push that issue more with cardiology. Women don't always get good cardiac care.
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Chickadee, you are so right that women don't get great cardiac care. Sometimes the only symptom of a heart attack in women is simply feeling tired! So Rowan, I agree you need to push for a better cardiology evaluation!
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Wayne, the word 'mets' is short for metastisis meaning the cancer has left the breast and come back in either the bones, liver, lungs, brain (the common areas for mets) or in other soft tissue areas of the body.
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Rowan, I saw your query and wanted to say that I had SOB too, did CT and bone scan, negative. Then it went away, then later returned for spells. They can also not find any heart damage nor fibrosis from the rads.
At some point I was quite frustrated and went to se a regular lung doc. He listened carefully and told me that what I described sounded an awful lot like allergic asthma. When I had taxotere chemo, I did not have the dreaded allergic shock reaction during the infusion. I did, however, get a raspy throat and a runny nose, and this has continued on and off, although I am a year+ out from final chemo. So, I really don't know, but I wonder if this SOB is actually an allergic thing and an after-effect of taxotere. I have never had allergies before.
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Linda, Thank You for your from-the-heart-driven reply. "Believe" I got it now. All really is very complex and I bow to all who go through the torture (too strong a word?) in the infusion rooms.
I found here, a group, "chatters" who well understand the details. I hesitate, now, to come down hard on the usually privately-owned infusion centers. Excellent nurses. Question the center owners. Got stuck on this upon learning what the Pres of the ACS reaps each year.
Warmest to all. Thank you for the replies, and to those who celebrate, A Happy Easter!
Wayne0 -
Good day, everyone.
I'm curious if there are any stage IV gals who have bone mets in their arm. If so, what were your symptoms, if any, prior to diagnosis?
My IDC, diagnosed in 2009, was in my left breast, and I've recently been having left arm pain from my trapezius, across, down and through my arm, all the way into my hand (worse in some areas than others) for over three months. My daughter yanked my arm some months back, and that was when I felt my first 'slice' of pain, which ran along the brachialis. With a clear cause of injury, I assumed I tore or pulled a muscle and didn't think anything more of it. But then my entire arm started to ache (and I mean ache, ache, ache) and feel funny. Not a pain or discomfort I can describe, since I've never felt it before. I figured this new pain must be from the two heavy duty Dell Latitude laptops I carry in my left hand throughout the day, traveling class to class for my job; that, or from the repetitive stress of transcribing eight hours a day. I assumed the muscles in my forearm were simply sore as a result of overcompensation and so I began carrying my laptops in my right arm. After about a month with no relief, I saw my GP, who recommended PT. Within the same week I saw my onc for my annual checkup, discussed the arm, and got his approval for PT. (My tumor markers are apparently fine; although, they're not an infallible diagnostic measure.) Four weeks of PT, 3 times a week, and the arm is worse! Aleve, Advil occasionally take the edge off the pain, but don't really help. There is definitely an impingement in my shoulder, but from what is the question. It's been almost four years since my mastectomy, so I'm doubtful that its axillary web syndrome (though could be). Also, there is no characteristic swelling associated with lymphedema, but applying pressure, very deep pressure, and squeezing feels really good. I now have a PET scan scheduled for Tuesday. I just want to feel better. Wondered if there are other survivors with or without bone mets, stage IV or not stage IV, who have experienced something similar. And again, if you're stage IV with bone mets in the arm, I especially would like to hear from you.
Thanks!
Anne Marie
p.s.: Arm also feels tight (a strange tightness difficult to describe). But again, not accompanied by any swelling.
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Hi AnneMarie......you picked the right girl here.....lol. I found mets to my left arm in 2009 after original dx in 2003 on the right side. They were so bad that I had to have my arm pinned before I started tx as it was easier to stabilize at that point rather than wait for a heavy bump and then have to fix a shattered arm. Virtually the whole length of my humerus was affected.
Im not quite sure if you are talking humerus or forearm with your pain but it is very rare that the mets will appear below the elbow just as it is rare that it appears below the knee.
The pain I had to begin with would come and go but not enough to make me think anything other than I had overused it. Gradually over a twelve month period it got so I didn't quite know what to do with it and no amount of pain meds (ibuprofen/paracetamol) would relieve the pain. I also have arthritis and bursitis in the shoulder so was being treated for that not thinking that I may have mets until I went for a checkup with the specialist and I winced when he was pressing around my neck/shoulder area and so he ordered a bone scan and CT.........the rest is history.
I do hope your CT comes back clean.
Love n hugs. Chrissy
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Hi Annemarie
Your pet ct will give you the answer you need. In my case, I had mets in my leg, not my arm. But I was sure the pain I was in was muscle pain, and it turned out to be bone pain. Sometimes we are not good at knowing the source of our pain. Let us know how the pet ct goes0 -
Hi Annemarie,
I was just reading your post and it sounded alot like my lymphedema. When you say there is no swelling, how is that being measured? Mine is not very noticeable by looking at it...but it sounds like our symptoms are very similar. Hope you find out soon what is causing the problem.
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Thank you, ChrissyB, Latte and Cooka for answering my query. Much appreciated.
ChrissyB: I first felt pain, and still do, in my brachialis (definitely the muscle, and not the humerus), after my daughter yanked on it, real hard, to break a fall (long story involving her on a swing and me falling). For months I only felt pain in the brachialis when I hyper extended the arm, but then in January I began to have this weird sensation -- fatigue, tightness, ache, but nothing like I'd experienced before -- in my forearm. After a month of physical therapy the pain is now in the entire arm, starting from the upper shoulder (along the trapezius) and extending all the way down the arm into the palm.
You wrote: "The pain I had to begin with would come and go but not enough to make me think anything other than I had overused it. Gradually over a twelve month period it got so I didn't quite know what to do with it and no amount of pain meds (ibuprofen/paracetamol) would relieve the pain." I can totally relate to this. I don't know if the worsening of symptoms are PT related or just part of a natural decline resulting from an undiagnosed underlying issue. I'm taking ibuprofen and aleve and neither provide any relief.
Cooka, I think to myself that my left arm looks like there is slight swelling, but no one else concurs, nor are they measuring. I think if the PET comes back clear I will ask to see a lymphodema specialist, and if that doesn't resolve anything, well then, there is always the orthopedist. LOL! What a circus.
Again, I thank each of you for answering my questions and sharing your own symptoms, experiences and wisdom. Very much appreciated! Oddly, the idea of it possibly being bone mets doesn't make me anxious (as I would have expected), at least not in this very moment. I try to take the adventure day by day. Of course, like any survivor, I have my good and bad days. Mostly, right now, I just want relief from the pain.
Warm blessings, and thank you for surrounding me with yours,
Anne Marie
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Good Evening. Where in the literature does it state that undergoing chemo will extend life?
The drug firms have zero proof that there is any good behind what I call slash 'n burn. The infusion firms want your money. The cancer industry - for those diagnosed with MBC - read that again, is running with a wondering ship containing a fruitless cargo.
Newly diagnosed - MBC - are in a quandry, face a difficult decision. Chemo WILL do harm to your mind - the art of remembering things, verbalizing thoughts and so forth. Frankly, from what I have read, (some-many?) doctors may be telling the truth; however, patients continue to be in a hope mode. I realize how what I offer above might/will be accepted.
For those facing MBC, enjoy what life God offers you. Sans chemo, you will think more clearly. And NO ONE will tell you that you will (might) live longer.
Best Wishes for a Bountiful Life, You are entitled to it.
Wayne0 -
Wayne,
The experience of a good many women with MBC tells us that chemo can, though not in all cases, extend lives, and do so without exacting too steep a price; although, there are admittedly exceptions, sometimes many. Speaking of many, there are many stage IV HER2+ women who continue to survive long-term as a result of continued adjuvant therapy. But I suspect that this is not the answer you wish to read, since I believe the kind women here have already answered your question sufficiently, something which you, yourself, acknowledged earlier in this discussion thread. Hence, speaking only for myself, as a member of the reading audience and a survivor, I find your interrogations, which you veil as innocent implorations, not only negative, but overly critical, belabored and unproductive. In other words, your refrain is beginning come off as disparagement. Besides, if you cannot trust the life experience of thousands of women, and that would be knowledgeable, cognizant women, women exercising their own autonomy, then at least be respectful of the fact that your question has already been answered in full and it is time to leave well enough alone. If I am alone in this thought, I will gladly retract my recommendation.
Anne Marie
p.s.: To think what this woman might NOT have accomplished had she taken your advice: http://www.nytimes.com/2010/04/27/health/27case.html?nl=health&emc=healthupdateema1&_r=0
The future, as we all know, is uncertain. Not one of us has perfect knowledge. It's a crapshoot, and so we make the choices that feel right for us at the time. Hindsight is 20/20; but hindsight also turns us into pillars of salt. Chemo or no chemo, it's about making decisions today, living today, and assuming we have 20, 30, 40 more years--a lifetime ahead of us. If we do or don't, take chemo or don't, what of it? We're adults, and there is plenty of information circulating out there about the risks. But let's not forget that there are also a good many stories about long-term survival, your wife's being one among them. There is a cost, sure. But that's life. We are, by our very humanity, vulnerable. I prefer it no other way.
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Wayne, I just do not understand what you are trying to prove here. Your wife has lived with BC for 18+ years, with the last 5 with MBC. Are you angry that she is still living? Are you angry that you missed out on a trip to Costa Rica? Are you looking forward to life without this burden? I wonder if there is something else going on that is totally not related to her surgeries, chemo treatments etc. To be blunt, is there someone else you would rather be with?
I know beyond any doubt that my DH would give everything, all, and more for me to live another day/month/year. Each day is a priceless gift. Even with the SE's, it doesn't matter to him as long as I can smile and love him. He literally THANKS me each and every day for taking my meds, thanks me every time I go for infusion. He thanks me for continuing to live and love with him.
Sorry, but I just do not understand what you are trying to prove with these thoughts. DH and I would be rejoicing for 18 years. And someday, I hope we are.0 -
"He literally THANKS me each and every day for taking my meds, thanks me every time I go for infusion. He thanks me for continuing to live and love with him."
So beautiful. Made my eyes wet.
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Thanks AnneMarie. That link to the newspaper article has really given me a boost - even though I am realistic, how wonderful to read that story. I so want to be part of that percentage - and who knows - maybe I am.
I know Wayne is entitled to his opinion, and I am not going to comment much about it, but his comments are actually starting to make me a little uncomfortable now. I personally have put myself in the hands of my oncologist and trust him to treat me with whatever he feels will do the best job. That is why he has studied and trained all these years - and though I read as much as I can, and am helped massively by the lovely people on these boards, ultimately it is his advice that I follow and trust.
Sue0 -
@Scutters
I also was so touched by what you wrote. Beautiful.
Sue0 -
Thank you AnneMarie and Scutters, you have verbalised beautifully my very thoughts to Wayne. Hopefully he will now take the hint that what ever we choose, it is our choice and we do understand the consequences of those choices.
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Restating, I respect all replies to my posts. Look at my handle: "Trying to Understand". Will sift what was said.
Wayne
Sarasota0 -
Wayne there is a forum for partners and care givers where you should pose your question once again. You will possibly get more answers to your queries. We have stated ours. Sometimes trying to understand the workings and thoughts of others minds is a futile thing.......it is better to just accept their choices.
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That is what it boils down to.
Reason I posted here, I do not trust the industry. The more that I meet MBC patients, and sometimes other forms of cancer, too many are convinced that this whole biz is all too often money-driven $s fed by patients who have hope, patients who do not understand the realities.
Appreciate those who have put up with me and my posts, and have responded accordingly.
BTW, a leading oncologist here in Florida acknowledged that targeted chemo - in this case for MBC - will never work 'til the related stem cell is destroyed.
Are you prepared to research this statement and pass is on to your followers?
Why are so many itching to travel down the yellow brick road? (where the Wizard is pulling the cancer chemo strings).
Warmest,
Wayne
"Trying to Understand"0 -
Do not agree with you. What is needed is truth. Patients need to understand the truth. This starts with asking the oncologist basic questions.
Nothing futile here. Just basic facts.
Best,
Wayne
Photo is of the two of us, Easter, 2012.0 -
Wayne, I believe you are not trying to understand our point of view, you are trying to convince us to go with yours.
We know the truth, we know the eventual outcome...
If you get stage iv cancer, you can do whatever you like with your treatment and none of us will come harass you about it. Please leave us with the same.
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Agree with Stormynyte. You have asked for information, we have provided it. Please respect us and do not try to persuade us to accept your opinions. Also agree with Chrissy that you may find more help on the caregivers forum. Best wishes to you and your wife.
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Hey all,
I've lurked on these boards quite often since my diagnosis but I have never posted.
I was diagnosed with stage III triple negative breast cancer in Oct 2012 at the age of 31 and while 26 weeks pregnant.
I opted for a double mastectomy, which I had on Nov. 12th, while still pregnant. We also put skin expanders in at that time (ouch!)
My surgeon and plastic surgeon both felt confident that they got all of the tumor, they also removed 8 lymph nodes.
However my path report came back saying I did not have clear margins on all sides. It also stated that all my lymph nodes were clear, however when we originlly biopsied one swollen lymph node it showed cancer. This really confused me! My surgeon says the tumor in my breast sat right up against the muscle, which is why that margin was not clear.
I was then induced a month early, gave birth to a perfect baby girl on NYE. Three days later I had my port put in place and four days after that I had my first round of chemo.
Right around Christmas I felt another swollen lymph node. My surgeon felt it and spotted it with an ultrasound, however after beginning the chemo it has gone down to the point that none of us can feel it. My surgeon says after radiation he will still remove it.
I have now had 7 rounds of chemo 4 A/C 3 taxol, with one more taxol to go. Then I will begin 6 weeks of radiation.
Last week I had an ultrasound on my heart due to the fact that I had a fast pulse. The heart scan came back good. BUT they saw a spot on my liver. Needless to say I am terrified.
The Oncogist says the spot is large, and fluid filled. He doesn't seem that concerned but he's kinda hard to read. He said that cancer is rarely fluid filled and cysts are common, especially after pregnancy. He's ordered a CT scan for Wed. I am a nervous wreck.
Does anyone have any words of wisdom, or similar stories? I just feel like I haven't gotten any good news yet and I could really really use some.
Thanks so much
Jenn0
