2010 Sisters
Comments
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Granny- If I could flyup there with my flappy (yes, flappy!) triceps and pick you up I would! Hahahahaha
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AmyJo did they add two more to the regular rads not including the boosts? It must be hard figuring a date then having it extended. Keep putting the lotion on. I used aloe and a sample cream the RO gave me. Slather, slather, slather......
NYC sounds like a lot of fun. I've been to upper NY once. Beautiful countryside.
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samsue - they added 2 more treatments and said there are no boosts in the plan.
The Miaderm I ordered arrived today. YEAH!!! I have finished rad #8 and the RO said my skin was looking good so I guess I will keep gobbing on the cream. My chest is starting to feel really warm, even DH noticed it this morning when he hugged me. He said my chest felt warm and then we both laughed because he normally hugs me to warm me up since I am ususally freezing.
Hope everyone has a restful evening. Amy Jo
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Amyjo glad there aren't any boosts to add to the number of days. It does seem to go fast.... but not when you're actually having the treatment. Must be mind over matter or something like that. I'm glad to hear you're taking rests during the day. I was working and had the rads done early before work. I took my lunch hour and had "naps".... as far as I know, they didn't hear me snore!
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Guess I should have found this site last year. I was diagnosed in July of 2010....cancer in my left breast but made the decision to have a bi-lateral mastectomy because of being BRACA 2 positive and both of my sisters had it. One is a survivor and one lost her life to BC at age 54. So my Dr.s and I have been fairly aggressive. I finished my chemo Dec. 28 had stage two of reconstructive surgery 4 weeks ago and have just begun my radiation treatments...number 3 today. This has been a long year of continual assults on my body but I am doing pretty well with it. I teach part time at the college level and only missed two days because of fatigue during the chemo. Not that I felt great but I did manage to do something normal. Not teaching this semester because I only have one class in the spring and thought it was a good time to rest and let my body heal from everything.
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Amyjo49, Hello, I have been to get my sec op on Tamoxifen. This MD says no Tamox wants me to have the injections to shut off my ovaries and take Arimidex? Totally opposite of my current Onco. I have seen my current onco again and he stands firm on the Tamox, says it should be 1 yr on and I should be meno 1 yr and can switch to arimidex? DH and DD are very concerned and think I should drop current onco and continue my treatment in Boston. I came home yesterday with the RX for Tamox but have not filled it. Boston MD is presenting my case before the tumor board to get a concensous today. I will wait to hear what they say, and then maybe ask for a 3rd opinion? What would you do? My gosh your experience sounds quite uncomfortable, I am having my 1st apt with radiology today, will start treatment within 2 weeks. I hope you are feeling good and can be more comfortable... I am under the gun on this hormone stuff, I am truly sick of all this **** and can't seem to get a clear understanding here on the hormone situation. Will talk with my RN rep from insurance co and see what she thinks about a third opinion..does it sound crazy that I need more opinions?? Kaz
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KazmTaz - I was having regular periods when I was dx'ed last June (I am now 52). I started chemo in Aug and haven't had a period since the first tx. I think my onc is going to do 1 year of tam to make sure I stay in menopause (which is highly likely) and then will switch to an AI. My understanding is that this is a pretty common approach for women right around menopause. I think he would consider something else. Are you concerned about the side effects of tam? or that it may not work as well with Her2+?0
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kaz- Didn't you have blood clots, perhaps to your lungs? Did you point this out to the Onc who wants you on Tamox? I think it is totally contraindicated for people who have clotting history. I know my Onc (who is a hematologist too) decided I should shut down ovaries and do Arimidex instead for that reason. I am declining, but that is a different story. If this Onc has prescribed Tamox when you have had blood clots, I would definitely change Oncs, or even get a third opinion.
kallimom- Welcome! Wow, you have already been through a lot. These ladies are wonderfully supportive and knowledgeable. Let us know if you need anything.
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DM - Yes, I think you are right, I remember now. If you have a history of blood clots I don't think you are supposed to take tam!0
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I am making an appointment with a gyn to discuss having my ovaries removed due to the fact that my mother died of a blood clot, and my grandmother died of some sort of gyn cancer. My onc is in agreement with the oomph.
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I haven't post lately so here it goes, finished rads last week, this week been having pains in my right arm which is my tumor side. Called surgeon's office and talked to Nurse Debbie who does my L Dex values every three months for LE. My numbers have changed and she wants to be proactive and has refered me to a lymphadema therapist. Not serious but discomfort in the upper arm area and some pains running from my arm pit to elbow.
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mjb - In the same boat. Doing the self massage that the LE specialist taught me really helped. I also had some pains too. I got a sleeve. Good that you are going.0
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the gift that keeps on giving..WHERE IS THE RETURN LINE????
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Kaz: My onc didn't want me to do Tamox because of a heart issue history. I had an ooph and will go on one of the AIs. I would not do tamox with a clotting history.
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Lady in Bama- Did you discuss the new findings at San Antonio that say AIs cause double the incidents of heart problems? This is new. Worth a discussion if you have heart issues.
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DesignerMom: No, I hadn't heard that. Where can I go to read up on that?0
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Designer Mom...can you tell me where I can read those findings regarding the AIs? Thanks!
Tori
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I would like to know about those findings too.im going to the onco on Monday.I would love to stick that in her face.
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Ladies: When I was researching Arimidex before I started on it over 7 years ago, I remember reading "someplace" that it "could" cause heart problems. I take a medication for rapid heart now but decided to risk it because the chance to protect myself from bc returning was more important than my concern about "possible" heart problems. Many of our meds can cause so many side effects and even heart problems that we would probably never take them if we took them all that they were going to happen to us. So far in the years I have taken the Arimidex, it does not seem to have had a bad affect on my heart. My Onc seems more concerned about any bone deterioration than any thing else when it comes to the Als and he seems on board "for" them. I come in these groups to learn more because he refuses to discuss the Arimidex or any SEs with me. It's always just "take them or else!"
If anyone actually finds the written info on the heart problems, please post it. I am trying to gather whatever I can to discuss this and whether I should continue the Arimidex at my next appointment. Thanks!
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I remember reading something about the heart issues so Ijust did a search from the big conference in San Antonio last Dec 2010...
it gives the stats that were reported at the conference
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Thank you Annettek for the information. I've always thought the Al's caused some patients problems with the heart. I wonder what the cut off is for prescribing it. Does the patient have to have had a heart attack or family history....
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annette- Thanks for the link to the San Antonio conference info. I know that the findings were also listed here on the BCO site as well. In your article link it says that there was an increase of 26% in heart incidents from AI users over Tamox users. I would love to know what the inciddents are over people who used neither. It does make sense as estrogen protects bones and heart. If these drugs block estrogen, maybe one of the SE is heart problems? Like everything else with this BC "journey", we have to weigh the benefits vs. the risks. In my family history I have more heart problems than BC. If I had a diagnosed heart condition, I would definitely want a thorough workup before considering AIs and then weigh the benefit/risk based on my individual BC.
I'll try to find the BCO link. It gives the original article along with the user friendly explanation.
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DM, I have a history of heart problems as well as stroke in my family (Dad, grandmothers (2) had stroke, 1 GM had heart attack, brother had heart attack) so I am taking supplements to help metabolize the estrogen into 'good' estrogen. When I discussed this with my onc, he rolled his eyes. So I said, 'Well, I disagree and I am NOT taking arimidex.' He doesn't like it but he doesn't hound me.
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Annette: Thanks for the link. I may print it up and show it to my "Onc from I don't care"! It says something about not going over 3 1/2 years and I am over 7! Seems like he is pushing his luck with me. I can already tell you what he will say. "It says "may" so not everyone will have that side effect!" "You must be back with your discussion group ladies, I see". (He does not approve of my reading or being in these groups. Ha! I wonder why?) The truth of the matter is that too many doctors feel they are too busy too read everything about our drugs and seem to get angry at us if we question them about the drugs. They seem to prefere STUPID patients who like to bow and kiss their "hands"! Well I have a spinal fusion so I can't bow and I'm not kissing any doc's "hands".
Thanks again for the link. I have already bookmarked it.
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what is odd about oncs getting angry over this stuff is that it is from THEIR major annual conference focusing on BC
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I will be bringing this article with me to my first appointment with my new Onc. I always wonder if they were the ones being treated, would they not be concerned about all these known and yet unknown SE? Or perhaps they believe medicine can fix any SE? When I pointed out that most people get osteoporosis on AIs, my Onc said she could give me a pill for that if it happens. Where does it stop?? I have also noticed that most of my doctors don't look particularly healthy: overweight, drinking sdiet soda, don't exercise etc...It doesn't give me great confidence.
BarbaraA- I'm sort of in the same boat. I can't take Tamox because of clotting disorder. I don't want to take AIs because of very strong family history of heart disease, diabetes etc... I'm hoping to balance and eliminate the bad estrogens through supplements and lifestyle changes.
Good luck to all of us, no matter what our decision. However, if you have a history of blood clots or heart problems, ask serious, hard questions to your Oncs. I think their "standard of care" protocol has them routinely giving out these prescriptions and sometimes not balancing risk vs. benefit.
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of all my medical team the only one who supports my choosing an alternative AI (again, based on stage/grade) is my PS. He doesn't want me to quote him to the others for liability/professional reasons obviously, but when I told him what happened on the AI, he was so interested and we sat and talked about it for almost 30 minutes. He was ticked as he had thought they were about as innocuous as aspirin. He could not understand why so many of his patients were so run down and assumed it was from their other treatments (i.e. chemo, rads). None of them had ever talked about the AIs with him. It is funny as he is imperious in regards to his line of care and to that, I do not mind as his results speak of the return on investment I mentioned earlier. When my BS (who was wonderful as well) told me it was ok to shower, I deferred to him to wait until the very last stitch was out. Did that help me avoid an infection? I think so. When I was told it is ok to excercise by others, he told me no-once he made sure I had range of motion he said, ok stop...and heal. And although I am flabby, he said diet and excercise will take care of that once I have the ok following exchange. That I need to do everything now not to damage the healing process within my body. That kind of logic makes sense to me. He does not mix professions either. When my neck had a swollen node and I had a bad cold...he sent me straight to my regular doc..he said get that checked out now today I don't want an infection in your body...I said you are only saying that so I don't have a problem with expanders and he said well duh. hahahaha I like that kind of logic it makes sense to me. He easily could have prescribed an antibiotic but wanted someone who "treats colds, the flu" etc to see me. He said I doubt you would go to them to see if your TEs are ok... Anyway, not everybody in the medical profession is ignorant over the dangers of the drugs. It is refershing to be able to talk with someone at the top of their game who actually listens. And also who convinced me that there is apoint to stop onc shopping...as the majority are constrained by their profession to present what is standard course of treatment. To settle on the least offensive that would not "fire" me and have myself monitored closely. A man after my own heart who in response to my asking for a little bit of botox at a good price when this is done said it would be his gift for my QUITTING SMOKING. (and to stop thinking he could not smell it behind my breath mints and Angel perfume:)..D DAY is Sunday...wish me luck:)
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annettek- Thanks for the feedback on not continually shopping for a new Onc, that they are constrained by the definition of their profession. I am hoping my new one (meeting Monday) will not "fire" me as I do not want to take AIs. My last one essentially said there was nothing much she could offer me if I did not want them. Good luck with quitting smoking. I know it is a miserable addiction (stats show worse than heroin). Use any trick, bribe, support group you need. My friend finally did a 12 step program for smoking. She said smoking was worse than quitting alcohol or drugs. She did quit about 10 years ago and is now karate black belt champion in the over 40 group with her own Dojo!
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annettek: What makes you think they "all" go to these conferences? I just would be delirious to think my Onc bothered to "read" the stuff they come up with. When we question them, it reminds them they are not doing their entire job of protecting us and so they get angry at us instead of themselves. Just my opinion.
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Re doctors: I love the doctors I have right now, but I've had to "exchange" a couple of them for new ones
There are bad docs out there just like there are people in any profession who aren't good at what they do. Our society puts doctors on a pedestal and we tend to think they are all gods. My onc did go the the San Antonio conference because I remember having to schedule an appt. around that. Thanks for the info on AIs.Just remember the old joke: What do you call the person who finished last in their medical school graduating class? Doctor.
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