TRIPLE POSITIVE GROUP
Comments
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Hi guys
Thanks for hearing the rant and apologies if I derailed the thread. I regard you all as friends even though we havent met so it just seems natural to share, but I promise I wont make a habit of it.
Camilegal: Yes if in doubt eat chocolate. My diet has gone to pieces today!
Iago and Specialk: yes good advice leave well alone and realise that money and friends is not the best mix. I kinda just thought it was a favour thing, but hey ho....
Moonflower and ashley2: The drop in my EF to 47 occured during chemo. My onco ordered more regular tests. The next one after the 47 was 50. I didnt have any symptoms but then again I was having chemo. Now when I went onto herceptin only a further muga showed 36 and they wheeled me from the clinic to the cardiac unit. Thats when they did an echo which read 65, so it must have been an error. I didnt do anything different other than take Ramipril heart medication (5mg, later reduced to 2.5mg) after the first dip to 47. My onco said that this medication was to protect my heart and that in the majority of cases my EF should increase. However, it was not guaranteed.
The meds seem to give me heart palps so I took the decision to come off them. I was supposed to wait till I finished herceptin No 18 but id had encouraging echos whilst on Herceptin only so I took the plunge and came off the heart meds. Felt better very soon after that. Dizziness and palps ceased.
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I want no lectures but I'm still between Oncs--since mine retired, but when she did retire she said I was doing exceptionally well with all of the treatment, she didn't expect it to work so well----then I made an app't for another onc---then I kind of hurriedly moved LOL and now I just found another On. that I had an initial meeting with a few weeks ago and I will see for whatever treatment is needed in a few weeks--so alot of my testing will kind of start over. I waited months and I know I shouldn't have but I have been in the hospital a couple of times since then for related SE's so I'm not exceptionally worried about whatever is comin up. My cancer was never mets--it ad something to do with nodes taken from strange places probably because I had 2 different kinds of cancer in my breasts so all the nodes were all over the place. So I personally don't think I'm IV, but my nodes were infectin away from my breasts. Am I making any sense? I don't think I am cz when he was trying to explain nodes an different places and such I thought he was confusing--so I might have this all wrong hahahaha--So I decided I'm probably a II cz everything worked on me--I like my own decision anyway, I feel much better
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Camillegal check with new onc regarding your stage. Sounds to me that you aren't a stage IV.0
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Got a question for anyone after everything we all have been through I have a heck of a time sleeping or staying asleep is anyone else?
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Ang: Sleep is something I believe many of us struggle with. I finished chemo June 2011 and still rarely sleep through the night. Hoping at some point that will change! Nights are tough! Grab little naps when you are able and that will help a lot! I do admit that for months after, I was lucky to get 3 hours straight a night but getting better.
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Lago will do---I rememer the surgeon told me this not the onc. cuz I didn't want to ear it. And the breast surgeon said it was a strane way my nodes were going I do know I had 38 or 39 out and even with herceptin my one tumor was as he put it huge. maybe in his head he saw it another way and when he biopsied me after he said straight out my dgtr asked reember not me from all tests he would think get ready for Stage IV.. That's why I didn't want to know anymore.
ANG--There's a special thread on not sleeping in here. Bit unfortunately I can be tired all day and not sleep well at nite There are alot of us who have problems sleeping alot take meds to help. So u'r not alone.
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Ang- thanks!
SpecialK- we should submit it to the dictionary! Lol! Nodey and in-nodey. I see my BS tomorrow, so I will ask him. Along with the billion other questions. Lucky him! Haha!
Lago- I have been following this thread about hercepton, EF changes and such. I hope to see my onc soon. First visit and so I will ask him. Hopefully he will tolerate me. And, has lots of patience! I really pray we click. I don't tolerate docs that don't take time, or are full of themselves. And, the nurse in me tends to get in the way (dialysis speciality, so BC is foreign to me..I think they may have covered it in one chapter in school). I will let you know what he as. I figure if everyone asks, then we can come to a consensus.0 -
The one article I read said if you have asymptomatic heart failure and treat it early enough with medicine, you are less likely to develop worse CHF or have a heart attack. So that's why I'd rather be monitored closely even if I'm not having symptoms. I'm especially concerned about heart disease b/c I lost both my mom (age 67) and sister (age 46) and father (age 74) to heart attacks (father had CHF). Even though I'm very proactive with diet and exercise, it still makes one feel more vulnerable to have a strong family history of heart disease - especially my sis dying at 46.
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hope you are all doing great and that you had a good summer
im here because I need some HELP!!
I have been away for a while working and going to school full time... I had my bmx on May and my exchange to implants on June... and now i have pain and small lumps in both breasts (cancer was just in one initially) i have appointments with both my reconstruction surgeon and my bmx surgeon but i was wondering if any of you who have had implant exchanges have gone through that before...
yeah.. im freaked out, any prayers welcome!
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I actually asked my MO about the new longer term heart risk assessment when I saw him 2 weeks ago. The information was just coming out so his comments were preliminary He said that some of the increase is attributable to the natural increase as survivors age.
I did, however, mention that it appears that we Herceptin ladies will need increased long term heart monitoring and he agreed that may very well be the case.
I don't want to frighten anyone but I have 2 long term BC survivor friends ... 12 plus years...who developed CHF more than 8 years after chemo . One actually needed and received a heart transplant. Neither of them got Herceptin. Was it chemo related? Who knows.0 -
awnoo - I think some of the ladies had this happen after MX and the lumps were fat lipomas. Maybe they will chime in soon.
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awnoo - I discovered several lumps this summer - they were fat necrosis. It's scary, I know! But take comfort in the fact that this is fairly common after any breast surgery.
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Awnoo I had a lump after my exchange. It was just some fat and went away.0
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I have a lump in my mx. BS said it's a fibrosis where the tip of the drain used to be. They can release it on the recon.
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Awnoo, I had bmx last summer and exchange end of march this year. I had a small lump under the skin near my arm pit but more toward my back. I was scared to death but it turned out to be a fatty lipoma. Like many are saying, it is prettty common. Let us know how it turns out for you.
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soltantio don't be scared just be diligent. The risk is increased but it doesn't mean that most/all women who get herceptin will get CHF. I think though what this study tells us is more research/follow up is required to find out how much of an increase. This just doesn't seem like a large enough sample.0
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Well u know I've just started seeing a cardiologist and had some test and he put me on 2, I thought 1, but 2 meds then I saw him last week and made another app't. for beginning of Nov. And I'm supposed to see some Dr. for my one kidney? I don't know what has to do with what but I did get alot of questions about chemo and herceptin????? The funny part is they're finding all these crazy side effects that are haunting me and chances are nothing will happen to me because of this disease---NONE OF THEM HAVE EVER DRIVEN WITH ME SOOOOOO.
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My cardiologist admitted there is a "hole" in the profession right now that needs to be filled with onco cardiologists.
Typically, from what I've experienced and heard from other women with Herceptin Heart Damage, is you get medication. An Ace Inhibitor and Beta Blocker.
The Beta blocker slows your heart to such an extent that exercise is futile and my cardio wouldn't prescribe it to me because he said I'd hate the SE and would end up not taking it. (He knows me well!).
The Ace Inhibitor I take is only a half dose. I don't particularly care for it either. It makes me more tired, fatigued than I am accustomed.
I've been on this for a long time and last MUGA, no improvement.
Edited to add: I am overdue for another MUGA by 3 months. I'm just tired of getting bad news. I can feel my heart struggling at certain times of the day. Sucks.
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Sorry to hear that, TonLee. I so know how you feel but i think it must be particularly bad on you. Before i used to do jog-run intervals of 5.6kph-12kph. Now i do 5kph-7.5. As i used to do 8 lb db's for biceps and tri, now i use 2 and 4. No kettlebell swings now, either, or even assisted chinups. However, i have found out that the Ab Ripper X of P90X is easy on the arms. So i have been doing that now. A few weeks before bc i purchased a suspension trainer, now i cant even use it fearing the LE.
Ang, nowadays sleep is elusive, DESPITE max dose of Ambien or (not 'and', i dont want to go there) Dormicum. I just manage 5 hrs max.
Im not sure if this has been discussed in this fast moving thread, but my onc told me today a study is coming out next week in which the entire bc world has its fingers crossed. Comparing not only the 6-month herceptin with the one year, but also with 2 years! Im not sure if this is good news or bad. He said he will have to call back his her2 patients who are already one with the one year tx if the two year course proves significant. Told DH about this (he's an MD, anesthesiologist) said we will take it if so. But i was hoping to be done by 2013! And my heart...0 -
tonlee that sucks bigtime, having to deal with the heart function issue then the SE's from the meds on top of it. I get so overwhelmed by all this stuff sometimes. Not only do we have to worry about surviving the BC but then we have this crap hanging over our heads. The 20% number that was quoted a few pages back is pretty damn significant if you ask me.
bcbarbie thanks for letting us know, I didn't realize the results were out next week. I am down to my last 2 H's so i am hoping the studies show 1 year is as good as 2!
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bcbarbie - Thanks for the heads up on the study - I have been waiting!! Shall we guess? I say 6mo is as good as 1 year and 2 years is not better than 1 year. Based on FINHER.0
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omaz thats my guess aswell!!!!!0
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Crossing my fingers on that, Omaz. I dont have insurance so i must.
Insurance companies are also wary of this, of course. But since i dont have any, not mandatory here in manila, i pay that extra year with DH's dear pocket. Probably will add an extra 1.5k- 2kUSD! Now, just with taxotere and low dose weekly herceptin cost has been USD200k- 250k per 21 days! God is providing us whenever we need it. So far.0 -
I concur with Omaz and Rosem on the. 6 mos v 1 year ot 2...lots of studies already show resistance to Herceptin over time. Question is will the mds change the protocol. They are very slow to make changes and I really don't blame them. The entire Herceptin treatment is in its childhood stage.
Another big change coming is sub Q instead of infusions.0 -
Omaz, I sure hope your guess is right. I only have 6 more herceptin to go. I wonder if they do say 6 months is as good as 1 yr if my MO will say I don't need the final 6? Sure would be great news.. Thanks for the info..
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I'm also hoping for the 6 month to be as effective.
I can't imagine taking Herceptin for 2 years...and if it goes up to that...I think we'll see a lot more heart complications...but who knows.
I'm just glad it's coming out! We've been talking about it, or I have been, since 2010! lol
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I saw my GP today and my manesium was to low so she called my cardiologist so he upped one of my meds. This is getting to complicated for me. I take over 20 pills a day from 4 a few yrs. back---and at all different times and it's like I'm becoming a pharmecist--not a good one, And it would be different if I really felt good but oy vey I don't and it tiring just thinking about them. LOL Honestly now I HAVE a cardiologist--that scares me.
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Camillegal eventually everyone gets a cardiologist. My mom has one and she has no heart issue.
Seriously it's better to be watched in this case.
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Oh I know Lago it's just me right now, I feel like to much to remember and follow all the meds and how I feel (bodywise) I hardly ever feel good anymore too like so many and I'm not complaining I just have to get over it. That's all.
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My cousin contacted me with news about her heart today, and she won't be finishing Herceptin (2 left). I will share if she gives permission. Wow. That's all I can say.
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