Illinois ladies facing bc
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Probably the best reason you could have, Lakegirl. The young'uns' always look soooo 'cute' with missing teeth as they start to become who they will be later on..
Blessings
Jackie
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Healing does’t means the damage never
existed. It means the damage no longer controls our lives.No Author Given.
Just a little note as it sounds a bit like the new normal to me.
Jackie
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Thanks!!! I just feel like my focus should be on them, not this...
Jackie...love the quote today. This whole journey is about control and/or the lack of control we feel we have!!!
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I went for several opinions. With an oncotype of 14 everyone said "no chemo". Even after a micro met was discovered, "no chemo". Then I met with one oncologist who explained that arrimidex was very new, the oncotype test was very new, and it takes decades to know what will really happen. She said "chemo" as a precaution so I did it. She said it would provide a boost of 3% and if you are in that 3% that's a lot.
Now I am in the same position with the endometrial cancer and I'm going nuts. The thing is they know a lot less about this cancer...no oncotype yet. Sloan said "no chemo".
But when I asked her directly, "If it was you, would you do it? She said yes!!!!" Anderson said "no chemo". My Evanston dr. says "chemo". I think we all want answers that don't exist!
I'm seeing the Evanston dr. this afternoon!
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Never ends Timbuktu does it. No one really knows for sure if you are that 3%.
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Tim - tough decisions. I guess you can only make a decision in which you have no regret. That is how I faced deciding chemo for BC. I had mixed opinions from different MO's and I felt like I was in a gray area. My reason for doing it was just like the photo Lakegirl posted....my son was only 4 when I had to make that choice. I hope you find the right answer for you and you can move forward and get out of this crap! Saying prayers for you!
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Prayers from me, too, Timbuktu, I hope you get the answers you need this afternoon.
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Timbuktu...I hope you get the answers you need...
Prayers...
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I had a Oncotype of 4. My original MO wanted to do chemo because I had four small invasive tumors. I went for another opinion at NW Memorial with Dr. Virginia Kaklamani. She said that the risks of chemo a greater than the benefit. I was 46 at the time of diagnose. I did not do chemo. Dr. Kaklamani does not believe in overtreatment or undertreatment. The treatment should be taylored to the individual patient. Go and get another opinion. You may not need chemo at all. Why go through all of this misery if the benefit is much smaller than the overall risks for your health.
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Saw a license plate today: cncr sks
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Spent the morning with the dr and her nurse, setting up chemo for Monday.
My husband and I were knocked for a loop. It sounds awful.
And with an ulcer, and diabetes, it's dangerous.
I was supposed to set up a ct scan before monday and I just got a call from the nurse saying not to.
they have to check with a GI dr how to handle me.
I'm glad they realized that.
It's really odd how these decisions are made. It's a crap shoot either way.
I never did return to "normal" after the last chemo. I can't even imagine what this one will do to me. No one "wants" chemo.
The dr said she'd give it a trial and stop if I don't respond well. I had no idea that the steroids were so
bad for your stomach. I can't even take NSAIDS. And they make diabetes worse.
But is anything as bad as recurrence? No. But the odds are in my favor.
Crazy making! What I like about this dr, Kirschner is that she seems make sense to me.
We think alike. And she cares, I can tell.
What a job!
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Thanks Dani, I see what you're saying. With such a low onco score I think most drs would treat you with arrimidex and call it a day. The thing is, there is no arrimidex for this cancer and no oncoscore. All of those pink ribbons and Avon walks seem to have made an impact. Breast cancer is far ahead of the game.
Endometrial cancer treatment is in the dark. I got 3 opinions, two from the top cancer hospitals in the world.
Sloan said no chemo until I told them what dr. Kirschner said. Isn't that disturbing? They changed their minds when they took a second look. Anderson said "no chemo", definitely. But she said a lot of things that made no sense, such as "if it recurs chemo will be more effective and you can live, on average, another 2 or 3 years." I'm not kidding. She was very young.
But yeah, how great it would it be to avoid chemo entirely? GREAT!
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Tim, it seems encouraging and discouraging at the same time. I think more research has been done on the kinds of cancers that tend to turn up more often. Lung cancer has had I think scant attentions too.
Jackie
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Timbuktu I hear you with the gastro issues. I was on 2 meds at the end of chemo for heartburn/gerd. Dealing with that now but I think it's because of Fosamax… which I am on now because the Anastrozole gave me osteoporosis.
What the hell is wrong with that Doogie Howser's sister? "and on average you can live another 2 years" Holy crap did you ask her how she would feel is someone told her that?!
They need to get better treatments. The cure is killing us, just slower than cancer would.
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You are so right Lago, about it all. I keep saying that in 50 years (God willing) they will look back on these treatments as barbaric.
Were you on proton pump inhibitors and carafate? I've been on those for the ulcer and they told me I should stay on the proton pump inhibitor for the duration of chemo.
My mother could not handle the fossamax. She really should have because she wound up with horrid osteoporosis. I still haven't gotten around to a bone density scan. The last one was about 7 or 8 years ago.
I'm afraid to find out any more bad news! It feels like checkmate. Maybe they were right and I should skip the chemo. You can die from an ulcer or diabetes too,
I think endometrial cancer is very common. When caught early it's very curable. They told me they caught it early and it was very confined. Then it turned out that I had lymph invasion, they just never mentioned it. And a 21 percent chance of recurrence. Only the Evanston dr. told me this! And then Sloan reconsidered!
Trying to distract myself or I'll lose it entirely!
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Timbuktu I was on Protonix during most of chemo then switched to Nexium... and by the last 2 chemos I had to had the Carafate. Bad heartburn started just days after my 1st chemo. Prolosuck and other OTC never work for me. This time around I tried Gaviscon but that didn't work either. Just started the Carafate now.
Get your bone density done. Chemo eats at your bones too. I had a big loss after chemo (we did a baseline just before and I was osteopenic at age 49 and perimenopausal). Still osteopenic. Was stable for 2 years on Anastrozole then I dropped again this past fall pushing me into osteoporosis. Thing is they say you really can't build bone, or build much once it's lost even with the meds so best to catch it early and stop the loss. I too have a family history. I'm also Caucasian, small framed, etc. I have about 5 of the risk factors. They worry even if you have 2.
You can die from complications of diabetes or ulcers but if you manage the disease you can live a full life. Cancer, well in some cases can be managed but for only so long if they can't put you in perminent remission/cure.
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As you recognize that you already own the wholeness
you seek, and no one outside you can give you more than
you already are, dysfunctional situations will evaporate
like bad dreams exposed to the morning sun.
Alan Cohen0 -
Oh Timbuktu....I was in hopes that you could avoid the chemo this time and it sounds like you have conflicting thoughts about this. Hugs to you as you face this decision and embark on this next part of your journey. I am so glad that you have faith in your doctor. You are so right. Nobody wants to do chemo.....ever and you have several other issues to consider here also. I know you will make the best decision for you. We will be here for you and I will keep you in my prayers.
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Thanks rita.
You had CMF too. Do you think it was harder than TC? From what you've heard?
I thought it was supposed to be milder but the dr told me that it's worse for bone marrow and some other things. Well, I'll soon know which is worse....
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Tim, so sorry you have to go through so much. Good luck to you! I agree with Iago to get your bone density. I had that same experience that she had with osteoporosis. It's better to know!
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I also had bone issues from TC. I have severe osteopenia and I am in my 40's! As far as meds...I take Atelvia as my endocrinologist said it is easier on the stomach. I have stomach issues and had to take Prilosec around chemo days. I can't tolerate any NSAIDS or Motrin for more than a few days. The Atelvia has not caused me any stomach issues and I have been on it almost a year. I had a 5% increase in bone density since being on it.
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Lago...I'm glad I caught your info re the GERD/reflux, I already take protonix 2 x day. I can only imagine what it will be like with chemo. When I was pregnant, the Nexium worked pretty well. I don't know about anyone else, but if the reflux is in check, the nausea is easier to keep in check too. At least for me when I have had gen anesthesia that has been the case. Also, if my reflux gets too bed, my voice sounds like I smoke about 6 packs a day...LOL!!!
Ritajean...you had dr Migas too, right? Did you get a second opinion re: chemo? If so, where and how is he when you ask?
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Lakegirl I was very nauseous with general anesthesia. I hate that crap. Would have gone home a day earlier if it weren't for that. I assumed on chemo I would be puking my brains out. I never had any nausea. Never took any of the nausea pills they prescribed except for the emmend the day of and the day after. I too once had gerd so bad years ago I actually lost my voice. That doctor kept me on Protonix for 3 months. Finally switched to my current gastroenterologist who prescribed the carafate. Felt better in days!
mdg I'll have to check out Atelvia. Really annoying that we had osteopenia in our 40's. I think my low D must have had something to do with that.
Timbuk2 ♥ ♥
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“When you look upon another
human being and feel great love toward them, or when you contemplate beauty
in nature and something within you responds deeply to it, close your eyes for
a moment and feel the essence of that love or that beauty within you,
inseparable from who you are, your true nature.”Eckhart Tolle
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Lakegirl....I have Dr. Migas. I did not go for an actual second opinion because I was pleased with the research I did and his decision to give me CMF chemo. My breast surgeon from Peoria (although not an oncologist) thought it was a good choice for me. If you wish to have another opinion, I think that would be very acceptable with Dr. Migas. I had a friend who was a patient of his that went to TX for another opinion. He had no problems with her doing this, and the oncologist in TX told her that Migas was doing exactly what needed to be done. I think you'll find him very approachable if you'd like to get another opinion, and I think many people do search out a second or even third opinion if they are not completely comfortable with the first suggestion.
Tim....I didn't have any bone deterioration or loss with CMF. I think everyone is different. It was a relatively easy chemo for me. I had some nausea side effects and fatigue at the end but I learned how to handle that early in the game.
My naturalist swears that bone tissue loss is a side effect of Prilosec, too. I haven't had time to research that though.
It is a pretty day here and I'm actually going to play 18 holes of golf. I hope everyone enjoys your day!
Rita
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ritajean Yes it is true. Prilosuck (my special name) Nexium, Protonix, etc all will cause bone loss if used regularly for a long period of time. I think these meds finally admitted to that not all that long ago. You'll even notice they now metion it on the TV commercials.
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That's about what I had on CMF.
Just got back from a two mile walk in the forest. Unbelievable here, at last.
I'm going to try to keep the walking up throughout. I've heard and read enough to believe that excercize is the most important thing we can do for our health and state of mind. Enjoy your golf game!
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Timbuktu I agree exercise is the most important thing we can do for our health both physical and mental! I too am happy the weather is nice again. I've been out powerwalking for several weeks now. Much better than doing it indoors on a machine or with a video.
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Tim, I just stopped in and was sad to hear of your new challenge! Good for you to take the walk! I know you are facing enormous concerns! All I can do is keep you in my thoughts as you travel on! Chemo can be tough for some. I didn't have too much trouble but my chemo was different! I am of the sort that if they told me it would perhaps improve my prognosis by 3 percent, I would tell them to bring it on you are right that there is so much is not known...... But it sounds like you have a great medical team and you Fodor cares about you!
When the dust settles, and I hope that is soon, you really ought to write a note to the doctor who alluded to your life expectancy. She really needs to know how painful that medicine is to swallow and just how not even helpful she is.
Susan
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Tim, I just stopped in and was sad to hear of your new challenge! Good for you to take the walk! I know you are facing enormous concerns! All I can do is keep you in my thoughts as you travel on! Chemo can be tough for some. I didn't have too much trouble but my chemo was different! I am of the sort that if they told me it would perhaps improve my prognosis by 3 percent, I would tell them to bring it on you are right that there is so much is not known...... But it sounds like you have a great medical team and you Fodor cares about you!
When the dust settles, and I hope that is soon, you really ought to write a note to the doctor who alluded to your life expectancy. She really needs to know how painful that medicine is to swallow and just how not even helpful she is.
Susan
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