TRIPLE POSITIVE GROUP
Comments
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SpecialK-Due to the inaccuracy of the CA 27/29 testing, many oncs don't even use this test.
I have seen women on this board where that test was totally inaccurate in both directions. ie-good score yet they had mets and vice versa bad score and they were ok.
Hang in there,
V
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lago Thanks again for your advice. Vitamin E it is! and maybe a bottle of 2 buck chuck
special K yuk just what you need to hear after completing chemo! Geez does it ever end!!! I have heard that tumor markers are not that reliable, in fact my sister-in-law had a high level of CA27-29, thought for sure she had ovarian cancer, bloated, tired, crappy feeling and to find out all it was was an ovarian cyst and endometriosis. I have to check with her, but I don't think her levels ever went below normal. This freaked her out, but her GYN was not concerned by them. I am with your MO, scans trump markers any day!!! Prayers are with you, and hope the wait goes fast for you. We know that is the worst part!!
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Geez--the complexities of this disease could scare anyone! My Breast Surgeon gave me my Pathology reports at my first post-op visit (which was this past Wednesday). I read the darn thing every day in an attempt to understand it. I think I need a medical dictionary....
Someone had a question about size of margins--my report says--"skeletal muscle up to 3 cm in greatest dimension is at the deep margin..." another section says something about a 1 cm margin. I figure there are so many things we have to trust our doctors for. I keep praying that they'll have wisdom.
Thanks to all of you for sharing your experiences and information. I'll be seeing my onco on the 8th--I'm anxious to hear what she says.
You girls give me confidence that I'll make it through my next stage of treatment--big hugs!
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Chris,
Lago explained everything very well.
My only additional comment is the lymph system is only one way for cancer to travel. It can travel through the blood and also through body tissue. Unfortunately we don't have a reliable way to test those yet. This is why women who have 0 lymphs can have mets.
I also agree that many more women who do not get mets (and move on with a long life) are not posting here. Right now this site is necessary, even vital to most of us. But one day, many of us will likely move on from this stage of our lives. (Hopefully with lifelong friends!) Never to return to the cancer train.
For those who are lifelong passengers, this is a logical place to gather info, hang out, and share stories. But, it tends to make mets look more "real" than perhaps the actual odds show.
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pasmithx2, I understand your confusion. My box says Nutri-Slim tea (with an i), ingredient is Chinese High Mallow, no mention of green tea and states -0- caffeine. Almost always 2 bags steeped in 1 cup of hot water works for me until the next treatment which is now 1 month apart. Hope this info helps0
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Thanks so much to everyone who has given such good advice and comfort. It has helped so much and I am not as worried every single minute as I was 2 days ago. I will call the onc. on tuesday, and my #2 TCH is on thursday, so I will have lots of chances to ask questions and get my worries answered.
Now my hair is falling out rapidly. In the shower my hands are covered....After getting ready for church this morning the sink was full of hair. It is getting in my eyes, my food, and my shoulders are always covered with shedding hair. It is lots of fun. I am thinking I will only be able to handle it for a few more days...and then I will shave it off....but then again I don't know if I can do that yet. I guess I will know when I am ready. I ordered a wig, but when it came in the color wasn't right so I didn't buy it. I guess it will be hats for me, which I am ok with.
Thanks again for everyone's support. I hope everyone is feeling happy and well. Happy 4th of July!
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Christean get a lint roller. Looks like you have light hair. Wear light colored clothing. The black will show all the hairs.
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When mine was falling out really bad I took a baby brush and shampoo and just leaned over the tub and scrubbed and scrubbed to get the bulk off. I couldn't stand itching my head and getting a handful of hair.
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Hey ladies joining the group triple sister here. I have already had my pet/ct scan plus an echo test. The still see the cancer in the pectoral muscle. I trying not to worry about and say that chemo and raditation will get it.
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I shaved my head- but many folks did not. I knew when it was right for me. Now 4 weeks out after last TCH- I have stubble all over and some very short patches of dark hair mostly.
No one wants to be here- much support here. Lago- you always know the right things to say and give great advice- sincerely you do!
My MO doesn't do markers or scans and only scans if there are symptoms or problems on the physical exams. At first I didn't like that- but the more I read the more I understand. There seems to be many things that could make markers tough to follow to me and not 100%. Scans wouldn't seem to really show anything if I had them since I am so soon after chemo? What I read seems that way anyway from reading, talking to MDs, and the notes on this site.
I do hope to get back to exercise plan- the MDs that I talk to all seem to think that's a good focus now post chemo. Once I get past the TE surgery this week hoping to step that up some.
Happy 4th to you all.
Lisa
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Christean: You're right, you will definitely know when you are ready to shave it off. When I did it, the shedding part got to where I just couldn't take it anymore. The thought of shaving it off was definitely worse than actually shaving it off. It turned out to be much better than the stress and anxiety I felt as it just started falling out constantly. You'll find the strength inside of you.
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I was one of those who never shaved. I did cut is short the day is started to fall out. Most of it fell out in the shower but as I mentioned I did have to vacuum my pillow and bathroom everyday for while. I also had a lot of thick hair so it took some time. What' really weird is my hair came in even thicker! I'm keeping my hair short for a while. I think if my hair were long like before it would take half the morning to dry it now with all this thickness.
I think my husband was fascinated with the process of my hair falling out. I do think most women look better buzzes or shaved.
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I am letting my best friend and my mother shave my head. Kind of making it a fun party instead of a horrible chore. Good thing mom has all the equipment already. Maybe I'll go for a faux hawk. lol.
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Gee...you know they want you to done as bad as you do at the Cancer Center when....
I went for Herceptin today and they forgot to schedule it! Not just today, but for the whole rest of tx (December!)...I guess the schedule only lets them go 6 months out so I was good until June.....and then they just forgot...so now they're scrambling to get me appts for the next 6 months.
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TonLee, so you have to go in every time for the Herceptin? Wow, I was hoping for some pills in a jar for the year. That does not sound like it will be fun. Nope, no way. Perhaps there needs to be a better system.
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No pill Shiny. Well actually there is a pill, Tamoxifen, but Herceptin is given through an I.V. ...generally every 3 weeks for a year, or every week during chemo, and then every three weeks for the rest of the year when the TC part is over.
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shinypop--ya, a jar of pills would be nice, but no, the IVs continue. I'm not sure why but it's possible that the drug is only stable long enough to be administered in an IV.
They can gradually reduce the time to run the Herceptin IV, if you're able to tolerate it. I know some have to have it run slowly to avoid a reaction. I have it down to 30 min now and I'm looking forward to shorter visits once the Tax and Carbo are done.0 -
My life is a cartoon: I used the blender today. To my dismay, after carefully adding all of the ingredients to a protein shake (dietician is making me drink since my DMX). Tasty strawberries, delectable blueberries, delicious peach froyo. After fully mixing all ingredients I then went to pull off the blender from the base. And that's where things fell apart. No, really, fell apart. There is now precious strawberry juice all over the counter and I may have to buy a new contraption. No more protein shakes for me. I will survive without!
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I saw my onc today the first time since chemo. She likes to keep the port in for 2 years! She did say it was up to me though. She said it only has to be flushed every 3 months so I might keep it. I don't want to jinx anything if you know what I mean.
She did say my peach fuzz is still from chemo and not from Anastrozole. Eyebrow thinning too. I'm happy about that… know it time it will normalize. Fingernail beds are just going to still take some time but getting there.
I didn't ask about the MUGA because another gal doing this with my onc asked. They just don't do them unless you report having issues or have issues to start with. I know I have read that if people have problems it's usually right at the beginning.
So I don't have to see her for another 9 months… actually will be seeing her NP. I do see my BS again in October so this should work out fine.
I only get 17 treatments so only 3 more Herceptins to go! Sept 6 is the last one.
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Wow Lago. Thanks for that info!
Donchya just hate that keeping the port in thing? They are really pushing me to keep it in as well, but it freaking hurts when I lift weights. I don't think I'll be able to keep it.
3 more! You are almost done.....congrats, that must feel good!
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Curious why some geet 17 Herceptin treatments and some 18. I'm one of the 18.
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Arlena I am male but receiving Herceptin. I have noted before that there doesn't seem to be consistency. Some people get Herceptin over 1 year (17 or 18 doses) some receive it for 2 years and I was told that the regime is 18 months and that's how long I will receive it (or before that if stops being effective.) There is also inconsistency in the way it is given. I go every 3rd Wednesday and the dose is administered via I.V. over 30 minutes, with a little bit of other infusion for a few minutes beforehand. I then have to wait for 90 minutes in the clinic with my Obs being taken at regular intervals to check for SEs. Others on here seem to get the infusion itself over 2 hours with varying observation times ! !
Lago Here in N. Ireland I have never heard of a MUGA but I get an ECG evey 3 months.
Dose number 10 is next Wednesday. Apart from brittle nails, runny nose - sometimes - and thinish hair I don't really have any SEs. I used to have a full head of curlyish hair (my pic was taken before I started the last lot of chemo) and whilst it thined out during chemo I didn't lose it all. It has not recovered from the chemo and I suspect that that is because of the Herceptin.
take care all.
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Hi All just received my cardiac echo yesterday, it is done every 3 months, and they are sticklers about it, bu that is ok as it is really no big deal except they cant use my port and use a vein to inject a vegetable dye to get better images.
Lago you must be so excited to be almost done! 3 left, WOW I need to ask tomorrow what number I am on cause I lost track, but pretty sure i will be done in Oct. Want my port out! it hurts when i do certain task and when I sleep on my stomache.
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Thanks for the info Frank.
Carberry: Why can't they use your port for the MUGA? I'm thinking maybe you don't have a power port but not sure. They used mine the last time and it was so nice. The vegetable dye is interesting and I'll have to ask about it.
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I can't use a port for my MUGA or CT scans because it's not a power port. They really have to force the dye in and a regular port can't handle that. Not sure why I didn't get a power port. Seems everyone else at my center got one. Maybe because I got a juvenile one.
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First time I met my onc he told me I'd keep the port for 5 years! When my mouth dropped open, he said well maybe we could take it out earlier...(I am stage 1). Although my PS said she would take it out when I had the nips constructed.
Why would anyone want it for 5 years?
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It's funny how you guys are being told that you'll have to keep the port for a long time and my onc wouldn't give me one...
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I have my 3rd Muga with next week. I also have a juvenile port Lago, but its a pp.
I went for a baseline bone scan at the beginning....does anyone know when we should have another one done?
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I had a MUGA scan last week and asked about the port. I have a power port but they won't use it for the MUGA scans. The tech said they are not certified to access it and told me I'm better off due to infection risk. They had a hard time getting the vein which has never been a problem in the past-made me so grateful that I got the port! As for keeping the port for a long time, no one has said anything about that to me. Mine has been no problem and is comfortable but I plan to get it out as soon as possible after I finish the Herceptin. I can't stand the thought of going through another summer trying to cover this thing. Mine is a "Bard" power port and not only does the whole thing stick way out, it also has additional "points" sticking out on each corner of the triangle which add to the overall freaky factor...
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I have SYMA scans rather than MUGAs but apparently they're the same thing. I just did a 2nd scan a couple of weeks ago and the tech said I could have gone to the chemo clinic to get the port accessed and then she could use it. I plan to schedule the port access when the next scan comes up. They have a hard time getting a vein for an IV and always go into my wrist or the back of my hand (ouch!)
There's been no mention of how long I have the port. The chemo nurse thought it wouldn't be left for too long because it needs to be flushed every 3-4 weeks. I don't have any problem with mine--it doesn't bother me and it's not that noticeable--so I'm not that anxious to get rid of it. Mine is a Dignity CT Port. Not sure if it's a power port but it seems to be able to handle power-injected scans.0
