TRIPLE POSITIVE GROUP
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Woot Lago!!!!
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it seems that organic, and free range, and especially no added hormones to the cow or chicken or goat is the thing that really matters. and i was startled to discover that the difference between high and lowfat things are negligible. and, really, i don't like those weird things they add to increase sweetness, when they take out the fat, just taste awful to me. i'd rather fill up on water before eating. one of my favorite ways to get protein right now is keffir! i could drink that stuff all day!
can anyone tell me why they would make me walk about a quarter mile after injecting me with the FDG for Pet scan? i am so pissed, because it says on the papers they gave me to prepare, that you are supposed to be still,and not even to talk! Pbrain? they said, it was because the stupid scanner was down again. but there were wheelchairs available. because, now the report says, may not be accurate, because of muscular activity...
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Linda 505
Just so you know right now that you will forever be second, third and fourth guessing everything . They don't know the precise doses are for maximum and minimum harm with our treatment . You got most of the standard of care protocol .
My MO and I discuss this type of thing all the time. There is no perfect protocol for all .
FBN
I had taxol all 6 chemos and was fortunate To kinda sail through with minimum dibilitating SE's . Good wishes.
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kathec
pissed is mild compared to what I'd be feeling......
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8 yoga poses for back pain....
I started yoga while in active treatment. Be careful with any exercise regimen...
Yoga has helped me physically & psychologically . Enormously.....
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debiann I used never eat much dairy. I'm sure that was part of the reason I was osteopenic at age 49. You do need calcium, granted you can get it from other sources. I'm a firm believer in moderation unless its crack, heroin or tobacco
You can make yourself crazy too. kathec I believe they need you to move that shit through your system. I had to do the same for the bone scan. But when they scan you is the time you need to play corpse.
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I'm drinking almond milk now for calcium and I love it. I've substituted it in recipes and its worked fine.
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I love almond milk - I use it for everything - you can also get it vanilla flavored and a combo with coconut milk - I love them all - I get them all unsweetened due to my diabetes and sweeten them with stevia just a bit.
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I've been drinking lactose free milk. It tastes just like ordinary milk, but has no lactose, it's been brilliant.
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yay lago! so happy for you!
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lago- though, on the papers i was given before the test that explained fasting and everything, it explained that i was not to do ANYTHING- including talking, while i was waiting for the test. afterwards, just drink plenty of water. cause it says on my paper "generalized increased striated muscle activity observed does potentially limit the sensitivity of the examination." how they explained it to me the days before i did it, you are supposed to not even exercise 48 before, and to stay still in waiting room, after the shot. i am just wondering if they blew it.
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Linda. I was a chemo drop out too. I only made 4 treatments TCH. I didn't have a sign either! It's what your body could take. You have to live after the treatment too.
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kathec I found the place that gave you the radioactive stuff the most F-d up department. I remember when I went they didn't even have my insurance authorization yet… but on the phone a few days ago they had. Almost threatened to leave. Was late for chemo-training because of it.
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I'm not sure how this news will affect those that are HER2+, but Puma Biotech just announced results of a drug trial that shows promise for a subset of breast cancer patients.
Check out Puma Biotechnology, Inc. (NYSE ticker: PBYI) in the stock market. It's up a crazy 200% (after hours) on the news of this new drug called "Neratinib". It could be good news for some of you.
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Thanks, lago! i think i will have to agree. that was the second appointment. the first one they sent me home, machine was down. 2nd time, machine was down again!!! after arriving at 6 am, i waited till 10, at which time they realized the guy wasnt probably coming to fix it, thus the long walk to the older dingy one in radiology, instead of the new one in nuclear medicine. its just with all of these small things (and several big ones), i have really lost confidence in my tx center altogether. but since i am drafting a grievance, i dont feel like i can change tx center, until i have that done, like, if i am not a patient there anymore, they will just throw it out of the window. if there are puppy mills, i am sure there are cancer mills.
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Robin. I also blame chemo for everything. Today I was talking (bitching) about something-and said-oh that was chemo brain. My so called best friend-said wasn't that like 10 years ago? And I said-SO!!!!!
Once we have had chemo-there are NO time limits. None.
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Article on what Johnsmith posted about
Yes - even though I didn't have treatment yesterday I did still take the steriods as I did not know that I wouldn't have chemo until I got there so I have been up since 330 this morning ughhhh.
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Thank you JohnSmith! That is indeed very good and hopeful news!
I follow this stuff & the market reaction here is unusually positive. Hope it's warranted:)
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I wonder how long it takes after the third trial is finished before they start letting the public use it. Anyone know? Some of us newbies won't be finished with Herceptin until next year.
Kathec, I would still consider finding someone else. If anything, peace of mind!! How can one place screw up so many times!?!
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Kathec - I would be pissed also. I definitely feel they f'd up your scan. Can you go somewhere for a second opinion scan?
Where I go, they test your blood sugar and insert IV. Next, you are put into a recliner, in a dark room. Given pillow and warm blanket. The dye gets injected and you lay there with your eyes closed for about an hour. Then it is a very short walk to the machine.
My first petscan I asked if I could read while in the comfy chair. I was told, "No...your eyes would light up like a jack-o-lantern on Halloween!"
Susan - I will blame chemo forever. I agree, no time restrictions. If you have been through it, you are entitled to use it! It was a bitch to go through and anyone who has, knows the battle scars and wounds too well. There is no medal, so why not have something we can pull out and use?!?
I'll be damned....!!! (Chemo brain moment) I knew there was something else....
Iago - congratulations! Awesome news!! This has been sometime coming...the fact that it feels like a good fit is wonderful!!
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Based on what I just read - up to 2 1/2 years to go from Phase III to the market.
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hi ladies, am hoping some of you can help shed some light on symptoms that i'm experiencing.. which i suspect is due to Herceptin. I can't seem to find more information online as to why it's happening and wondering if anyone experienced something similar too..
This is already my 3rd cycle, and there appears to be a pattern. The symptoms:
1) low pulse rate of below 60 the night and few days after infusion (normally, my pulse is about 80)
2) after a couple of days, as pulse rates gets back to normal, my blood pressure drops real low... eg below 100/60 (normally i require blood pressure medication and my bp is never ever on a "normal" day that low)
3) a few days after the infusion eg. day 5, i experience something similar to a heart attack symptom: profuse sweating, sudden chest tightness that radiates all the way up to head/face/jaw + minty breath feeling which can last a couple of days.
During the first week, i'd also hear my pulse very clearly and won't be able to sleep on my left side as it's heard so clearly, i can't sleep. It's sometime from 2nd/3rd week that things get back to normal. My oncologist thinks it's nothing to worry about as adverse effects like this happen more commonly during infusion and not days after, yet i really would like to know why it's happening. Any idea?
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that would scare me. sometimes i don't think oncs' get as worried as we do about our bodies. are you still taking the blood pressure medication?
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yen - sounds like your ability to hear your heartbeat is pulsatile tinnitus, which can be a SE of chemo, unlikely to be the Herceptin. Not sure about the pulse and BP SE you are having, but sorry that you are.
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yen, when is your next MUGA or echo? They usually schedule those 3 months apart during Herceptin. I'm hoping to talk my doc to cut one of my BP meds. I usually run about 100/60. So i think I can afford to lose one. Are you taking any BP meds? Otherwise it's probably just an SE of your chemo. Weird but who knows. If your MO is not worried I guess I'd just wait and see. But if I felt real bad I'd go to an ER.
Much love
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Wow FBN! So cool! I too love STP! Looks like Scott cleaned up his act and is doing well. I think I would faint if I met him ;-)
Oh, and I wonder if what your MO meant was no side effects for months or years. Taxol is do-able, but it does cause neuropathy which can take some time to resolve. I'm 1.5 years out from final taxol chemo, and I still have some pretty annoying neuropathy in the balls of my feet. Betcha that was what he meant. Hope all went well today!
Girlstrong, grading is subjective on the part of the pathologist. Special K is also right, it depends on what area they are looking at. On biopsy, I was stage 3. Pathology from the lumpectomy put me at stage 2. Two different pathologists reading two different parts of my tumor.
Tadover, welcome. We'll help, so don't feel alone.
Lago, way to go!!
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Kathec, this whole thing is nuts! Where do you go for treatment??? I'll make sure to stay away.
The reasoning behind FDG as a contrast dye is that it is based on glucose. Muscle LOVES glucose, where as many tissues prefer fats (like the heart muscle) or proteins. So you want to detect tumor tissue that is very actively metabolizing (eating up everything in site) by dosing the radioactive glucose, letting the patient rest for a bit, so the muscle doesn't scarf it up. Kind of reminds me of when I'm feeding my garden with Miracle grow--I want it to go to the plants, not the weeds. But I digress...I have gardening on the mind.
So what happened to you is they injected you with a glucose substance (it looks like a sugar to our tissues) and the muscle just hogged it up as you walked across the campus. Meanwhile, you took this dose of radiation without allowing it to do what it is supposed to do, go to cancer cells which eat like little pigs, while the body rests.
Does that make sense? It's ridiculous that they had you walk far-------aye yi yi! It sounds like the techs don't even understand the procedure.
So much of your contrast probably ended up in your muscles, and they just assume that is from walking without worrying about uptake. Your report is full of butt covering because you probably had tracer in your muscles. Wow...but I would go ahead and believe the lack of tracer in other parts because the walking would have produced "false positives" in your muscles, but hopefully not "false negatives" in any potential cancer cells because they give the tracer in excess. PM me if this doesn't make an ounce of sense. I live in my own pbrain world sometimes. Tee hee.
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Oh, and Kathec, I've seen images from PET scans where people got the FDG and went to the cafeteria for some lunch afterwards. Tee hee, they have all this uptake on the sides of their faces from chewing!
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oh, so the people went to the cafeteria to eat after the fdg, but before the scan? i'd like to see those images! i'm going there tomorrow to pick up my 2012 pet scan results, that i guess i had right after my surgery, cause i can only find one page of it. that is why i was a little suspiscious, too, because the old one mentioned a 13mm schlerotic lesion on my sacrum, several pulmonary nodules, and right renal uptake. this one mentioned none of those things. So, i have always wondered if those things WERE cancer, and if i really was/am stage 4. Serious butt- covering has been unearthed by me in my med rec's from there. the only reason i have persisted in going there, is they have one excellent LE therapist there, the radiologist who did several of my us guided biopsies, and my mo. who is a very busy man, but who does try to answer my questions. at first i didnt like him, but he has grown on me. new bs is so-so. i am working with the patient advocate there, and i am trying to keep my grievance against the first bs from turning into a book, that i think i will go ahead and write anyway(with punctuation and correct spelling of course). If i was really stage four, then it wouldnt really have changed anything, except i would have opted out of surgery, as i have noticed many stage 4 gals have, cause it is already in the blood. because i really dislike what has happened to my formerly amazingly strong arms. Thank you for a great explanation, pbrain. And even tho i love genentech, and roche, i really wish i had bought puma stock a week ago.
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Thanks SpecialK, i'll do some googling on pulsatile tinnitus!
Kathec, yes, i still take my blood pressure medication.. though with the dips, i monitor almost every hour, and only start taking the pills on days when the bp does get slightly elevated.. avoiding the bp meds when the pressure is low in case it sinks even lower!
Moonflwr, it was scary the first time it happened - the "heart attack" symptoms, though it goes away after half and hour and my oncologist thinks it's not neccesary to do any scans till i finished my 4 cycles of TCH. Regrettably, i tried getting more information from Roche, and now they've slapped my oncologist with paperwork as they consider my symptoms as "adverse side effects" and he now feels compelled to say that i should get tested by a cardiologist if i want to. I will most likely wait till i finish the fourth cycle, which is the original plan, as i doubt the cardiologists here would be able to give any information on chemo drug effects!
If only symptoms are more easily explained!!! I feel pretty normal most of the time besides those first few days of pulse and bp crazy patterns and the fake heart attack episodes. Thanks for sharing!
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