TRIPLE POSITIVE GROUP
Comments
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Dragonfly,
We have the same port. Mine is about a finger away from my colarbone near my bra strap so it goes mostly undetectable. If it wasn't for the incision scar you wouldn't know it was there. My cancer center wouldn't draw blood from it until the day I got stuck 3 times by the lab tech and my BP was way up. My Onc at that point said the nurse could access it and the tech could draw the blood from it.
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Sewingnut Yours is placed in a much better location. Mine is at least 2 inches below my collar bone and much closer to the center so I have to be very careful with V neck shirts or button-up shirts, etc. Don't get me wrong, it has been so incredibly helpful but I hate the way it looks! The nurses at my infusion center always do blood draws from my port before my herceptin (I guess they are certified) so the only time I haven't used the port is for the MUGA scans and the Pet scan...0
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I've been pretty lucky too as far as the port goes. Never caused me any problems and unless I wear a spaghetti strap, you can't really see it. Sounds like it is in the same position as Sewingnuts. When I have scans if I go to the oncology nurses first and they access the port I don't have to get an IV. When I got my first MUGA they told me they could not access the port but if I went over to the oncology nurses first they could then use it.
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Dragonfly I can go to the infusion room to get my port accessed before any test or procedure. I think if I need any kind of blood draw that's what I'm going to do. At my place the only ones that can access the foot is the chemo nurses and the the OR nurses. When I went for my colonoscopy the nurse said she wasn't allowed to put the IV in my foot (even though she knows how). She was allowed to access my port though. Go figure. I guess there is an increased risk of infection with accessing the foot.
Don't listen to this BS of "your better off" Most of the time these people just want to do what's easy for them.
I don't know if a bra strap will be a problem. Other than the extra huge training bras I wore after surgeries I haven't worned a real bra since August 31st… the morning of my BMX.
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Good evening everyone. I have a question. What is MUGA?
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MUGA = Multiple Gated Acquisition scan
It measures heart function.
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thanks Iago. I guess I will find out what it's like when I start the Herceptin. I will be joining a study when I start Herceptin where I may be getting something to protect my heart.
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Hi I had my second round of chemo this week, and since last week when I had chemo I have put on 4 pounds. is this normal as I have to get chemo every week for the next 8 weeks and do not like the thought of putting on 4 pounds every week........................
The nurse said it was the steriods that are putting the pounds on
I had breast cancer ten years ago and did chemo then and did not have this weight gain,
Thanks for your advise.
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sam1--Weight gain is not unusual. The steroids can do it. The anti-nausea drugs can make it easier to continue eating. You may be fatigued and not have the same activity level. I think I read somewhere that gaining 15lbs by the end of chemo is common.
Everyone is different though. I've managed to lose 5-10lbs with each TX and then gain it back before the next one. So I've come out the end at about the same weight. I was also lucky and didn't have the fatigue, so I kept working out all through. I think that helped a lot.0 -
pasmithx2 thanks for your relply, I was wondering if I asked them next week at my third chemo round if they could maybe cut down the amount of steriods they are giving me, they have given me some anti sickness pills to take incase I need them, but they have told me if i do not need them do not take them. Ten years ago when I was getting chemo they did tell me to take the anti sickness pills.
I so far have not felt fatigue at all, I walked four miles today after chemo, hope this lasts.
Thanks a lot for your input.
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sam1--The steroids do help keep reactions down so it might not be ideal to cut them down just to avoid a few pounds. They can increase your appetite but you can try to manage that with exercise and careful food choices. I have 3 days of Zofran starting the first day but I not yet taken the other anti-nausea pills I was given. I feel for the ladies who need them. Nausea and vomiting sucks.
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Sam I ended up putting on about 16lbs but I was pretty thin to start with and 8lbs of it was fluid. Part of the reason we put on weight is we tend to do less physically. The other reason, especially at the beginning is we retain fluid. For me it was the taxotere. The steriods actually kept the fluid off me. As soon as I stopped taking them I would put on 4lbs in one day.
You will lose it after you finish chemo. I'm still not up to my old exercise routine (just had surgery) and I only have 2-3 lbs to go to get to my really skinny weight. Right now I'm actually fine where I am. I'm 5.5 weeks PFC.
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I do have a power port but no one at the the cardiac office is certified to access it. As a matter of fact they just trained the girl that is the scan tech to put the cath in for the dye. Used to be the NP would come in and do it. No biggy it all worked out, but my #'s were a little lower than last time, gonna re-check me in 2 mo instead of the 3 just to make sure, had me at 65-70% last time and doc thinks thats a little high and maybe they made a mistake.
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Hope you don't mind me jumping in again after being out for a while.
B/c of the Herceptin I get the MUGA's every 3 months and I have to wait a bit longer for a RN to be called in to access the port, but they always use it. My last Muga though they did have trouble injecting the dye in--but they had my arms up already and as soon as they let me try putting my arm down it went through.
I'm sure each hospital has their own procedures & routines.
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I use my pp for Muga. But I have to get it accessed at the cancer center first. This time I will probably just let them poke a vein....faster that way.
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Our Center is all set up with the lab in the same building so I just go upstairs to the infusion room and the chemo nurses access the port and then I go downstairs for the MUGA and then back up to get it deaccessed.
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Is a Power Port harder to access than a regular port? I've been regretting that they didn't give me a power port, but if it requires special techs, maybe it's just as well. I am NOT looking forward to all the IVs I'll have to get instead of port accesses, however.
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Windlass: I don't think it is harder to access. Not sure about the regular ports, but the pp has 3 little prongs on it and they just find those with their hand and easily access it and it is basically painless too. I feel a quick, little pinch and that is it. With the pp, they can do the MUGAs too. I get everything done via the pp.
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I had a good visit with my MO before my TCH #2 last thursday. I have been very worried about Mets and what tests I haven't had... she did a good job explaining and reassuring me. I'm a big control freak- and I am learning that one of the hardest things about cancer is not having control. Sometimes I just need to relax and let things go. Worrying doesn't do much good.
I asked my MO about vitamins/teas/herbal supplements. It seems like everywhere I go someone is telling me to drink a special tea. I was surprised when she told me to not take anything. Not even vitamins. She said that because I am ER+/PR+ she wants me to stay away from them. She says they are not FDA regulated, and there is a small possiblily of contaminants including estrogen/progesterone. She said there is no way to know and it's just not worth the risk. I am ER+ 74%, PR+ 63%, which seems quite high. So I guess this makes sense.
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Christean: Glad you got some reassurance. My onc discouraged a lot of the natural stuff too because it fights the chemo. She did encourage me to continue the Vitamin D, Calcium and also B Complex (the B helps with the potential for neuropathy).
So happy your doctor helped you feel better about things - that is half the battle.
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Christean: Just wondering how the hair issue is going since you last posted near the 4th. I think you were almost ready to shave it off, but never heard how it went and how you might feel now if you did shave it off.
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Just wondering, do you need blood draws every week when just the Herceptin begins. I'll be getting mine every 3 weeks beginning in August, and I'm hoping the weekly trip for blood draws can discontinue.
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I have Herceptin every 3 weeks now. They only draw blood the day of infusion.
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kqteaches--I've been doing the herceptin every three weeks with the taxotere and carboplatin. The blood draws were on the day of infusion before the dr's appt. Now that I'm moving to herceptin only--still every 3 weeks--there won't be blood draws every time. I don't know the schedule yet, but I only see the onc periodically and blood draws may coincide.
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achpurple- My hair is gone. I had my daughter buzz it the night before my TCH #2. I am glad that part is over. The anticipation was so emotionally draining. And, it hasn't been as bad as I anticipated. I am doing just fine as a bald girl. Everyone always says they love my hats and I am having fun wearing them. I have noticed that I am freezing all the time. AC with no hair is cold! But, maybe one day soon the hot flashes will kick in and then I will have something else to complain about...lol
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No blood draws for Herceptin only for me. I did get some because they were testing my Estriol levels but not every time. They stopped that now. My levels are so low I am now an prepubescent boy. Only 3 more Herceptins left for me. OMG I can't believe this is going to end.
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I still get a CBC with H only and last tx, my first H only, MO did a panel of regular labs - Vit D, a bunch of other stuff which was all over the map with results, skewed by chemo SE, and the CA27/29 which was 3 times normal. He is re-doing the CA 27/29 this Thurs. when I have the second H only.
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I'm doing a clinical trial of TDM1, the Herceptin-based drug, so I get blood tests every week.
I need advice on that count. My liver numbers have been sucky -- does anyone know whether we triple positive gals can take milk thistle to help the liver? I'm reading totally mixed reviews.
I am taking papaya leaf for my low platelets. I get a blood test tomorrow, so I can let you know if it works or not.
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windlass - what does your MO say about those supplements?
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Windlass- I talked to my MO at my last visit about herbal supplements, vitamins, teas, etc. My MO told me to avoid them all. She stated that since they are not FDA approved, she doesn't trust any of them not to be contaminated with other things which could work against chemo. For example, estrogen and progesterone. This could really be a bad thing for triple + gals since our tumors grow off progesterone and estrogen.
I would ask your MO about these supplements before you start taking them. I had a bunch of things people had suggested I take, and chose not to take any of them after my visit with her.
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