TRIPLE POSITIVE GROUP
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Thanks Lago! You have mad skills with those links. I haven't figured out how to do the word link yet!
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Yes bhnath, the info came out September 9th. And yes, it was the ALTTO arm with lapatinib independently....so you should be fine if it's being used in conjunction with other therapies.
Crazy stuff. I can't believe I am taking a handful of trial drugs everyday....hoping they are doing what everyone hopes they are doing (neratinib trial is 6 pills a day!!)
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Hi, triple + friends,Had my first infusion today. They told me it would be T, C and H, but it was only H, for a loading dose. I was fine-just napped after. So I had to adjust my ride schedule. Next week I get all 3, then start going in every three weeks.
I'm curious--do your MOs make you get a finger stick before getting your treatment? I don't understand why they don't use the port to draw the blood--isn't that partly why we get one? That was annoying because I had a finger poke and bloodwork yesterday before port insertion surgery. Seems to me senseless. Then they took blood from my port as well!!
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Hi all!
NancyJill-that does seem crazy. All my bloodwork is pulled from my port.
I went to yoga tonight, that is taught by my oncologist. There are only 4 or 5 of us there usually, so we often use it to also get in some medical questions. I told him that I felt worse getting just the dose dense of herceptin once every three weeks than I ever did on weekly Taxol/Herceptin.
He said I am not his first patient to say that, and the one that did switched back to weekly with no problem. He said I can also two every two weeks. I am going to research this a little further next week. If I go to every week, I sure don't want to incur a $50 copay every time. He said he would figure out how to do that on his end also so we don't have that, since I wouldn't need to see hi mevery week.
Just thought I would pass that on to those of you that may have some issues. It takes me about a week to get back to feeling normal. I am very achy, extremely tired, not just sleepy but worn out after I do one thing, and I have about 3-4 days of occassional queasiness.
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NancyJill sounds to me like they needed to take the blood draw before your port surgery. You should be getting blood draws from your port from now on.
BTW no one sticks my arm/fingers since bmx. I have nodes removed from both sides, LE diagnosed on the left arm and undiagnosed (stage 0) on the right. They want blood from me they have to get it from my port or my foot!
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fluffqueen - my onc also offered herceptin weekly, every 2 weeks or every 3 weeks. My onc had them slow the every 3 weeks infusion to 1.5-2 hours and that helped out with the SE's. How fast are you getting the infusion?0
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I had the finger prick before seeing onc, then to infusion room where they drew more blood through the port. Onc explained that she gets results from finger prick immediately so can see the white count and make sure you're okay for chemo. Now that I am only getting Herceptin, I don't have to get the finger pricks any more. They do hurt!
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During chemo, I never got finger pricks. Upon arriving, they took my blood (from the port) and then by the time I saw my onc she had all the results (they did them stat) so she knew whether I was good to go or no. With the Neulasta, there was not a problem.
Does anyone have an emergency band or something similar in the event of an emergency advising medical professionals NOT to use your affected arm(s) for blood or blood pressure? My onc said in an emergency they will just do what they have to do.
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Arlene I don't but have been thinking about getting one. Your onc is correct. In an emergency they will do what they have to do. I think on my chart somewhere I read no BP or sticks on arms unless medically necessary.
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hi ladies- im off on my vacation to INDIA tomorrow for 2 weeks!!!
see you when I get back
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Have a fantastic trip red!!0
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Redninrah I know you will have a fantastic time. Wow not I'm really really jealous.0
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Well, now my diagnosis is somewhat being questioned. Onc wants to redo Her2 test with FISH since she doesn't think the HER2+ "fits" with the rest of my path. Wouldn't break my heart if it turned out to be negative the second time around! This time they will test the actual surgery tissue and not the biopsy tissue, so more hurry up and wait. Also, I am going to genetic counseling tomorrow as onc again is questioning where the BC came from in the first place. Yep, father's family are Ashkenazi Jews from Russia... So. October 10 is now my next new deadline to find out all of these new details and see what happens next.
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Madpeacock I had both my biopsy and surgery tissue tested too. I too had the BRACA test because of being Ashkenazi on both sides. It just is slightly higher if Anshkenazi Jewish. If there hasn't been much history in your dads family there's a good chance you are not BRACA+. I was negative.
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Have a great trip Red.
I keep questioning my diagnosis because as many of us, I have NO risk factors for bc but both biopsy and surgery tissue were tested so guess the questioning is over.
Lago: What is Ashkenazi? Sorry to ask but I've never heard of it.
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Omaz-I get mine over 30 minutes. I asked him about getting it over a longer period of time, but we were talking about a lot of stuff and I don't think I every got an answer. Will try to ask tomorrow as I am scheduled for next Tuesday and then we leave for Hilton Head on Thursday and I don't want to feel crummy for three of the days.
I have a medical bracelet, spent hours on the internet looking for one that was sterling silver, Tiffany style. Ordered it and when I received it, and when I received it, I realized I put the wrong arm for no needles. LOL!!!! What a dumb a**. I just used a fine point sharpie to write over it and will change the charm part after the implants are in.
I am watching the news where a woman with breast cancer flew here to Indiana. When she went to fly back, they busted her going through security with a marijuana pipe and some seeds. BAHAHAHAHA!!!! Since medical marijuana is legal in CA, and not here they didn't arrest her and are just destroying it, but can you even imagine?! I laughed all the way through the news thing.
I always said if I was diagnosed and needed chemo, I was going to smoke pot. I never have. I am going to have to make a trip to California to see my daughter and try it out I think, althought that it probably setting a really bad example.
In the meantime I will just keep slathering the hemp cream on my head. Maybe that will have the same effect!
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ArleneA I was just skimming through some of these posts and several of yours caught my eye.
1. My MO said breast cancer, ovarian cancer and colon cancer are all related and said several times: "get a colonoscopy when you are done with all this". I'm 53 and should have done it by now anyway.
Has anyone else of these three cancers being linked up like this?
2. I'm one of the "lucky" ones too: Grade 3, ER/PR 88/65 and Her-2/neu by FISH: Positve (ratio of 12.45). I don't think I had the ki-67 test.
3. Before this, I seldom took anything OTC and almost never took prescription drugs with one exception: Trazodone - 50 or 75 mg before bed. I had the same insomnia pattern as you for YEARS and bless the day a friend of mine recommended this to me. It's an old line antidepressant (at a much higher dose). SE's have not been a problem for me and I don't wake up groggy. It's really cheap, too. You might want to ask your GP about it next time you see her.
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Welcome sue_from_wi! Have you started chemo yet?0
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sue_from_wi, i thought i was the only person on this forum who took trazodone! it really helps me sleep and you too, huh? i love how cheap it is, too. so now we're 'trazodone sisters.' ha! and welcome!0
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Sue from wi-Not glad to see you here, but welcome! I believe that breast cancer, colon cancer, and ovarian cancer are in the same family of cancers. I did get a colonoscopy before I started treatment, but I actually had it right before I was fully diagnosed. My dad died from a rare duodenal tumor and my mom had a very early stage colon cancer treated, so I am considered high risk and on the five year plan.
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Omaz My first treatment is at 10 this morning. TCH 4x. At this point, I'm more curious and impatient than worried. And mored concerned over the coming days than today since I understand that's when the SEs start to kick in. This board has been such a blessing to me - I've learned so much from all of you about what you've been through and how you've managed.
YaYa5 - Hurray for Trazadone and sleep and for you! Our treatment regimen is the same but you're doing 6X and I'm only at 4, even though mine is later stage. I was going to press my MO about why only 4. Was the number of Tx ever a point a discussion for you?
fluffqueen01 - Thanks for welcoming me and for the info about the relationship between these cancers. We don't have any cancer in my immediate family so colon cancer wasn't even on my radar. Now it is. But you're so right - Life IS good today!
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Sue_from_WI yes I have heard all 3 of these cancers are related. I had my colonscopy this spring (turned 49+1 in February 2 weeks after my last chemo). Both my parents had suspicous polyps removed and my maternal grandmother died of colon cancer. My colonoscopy was all clear. Don't have to do it for another 10 years.
Good luck with your first TX. You sound so calm. I'm sure you'll be fine.
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sue_from_wi - Good luck with your first treatment. Keep up the fluids, eat small and often. I think some new research came out this year about 4 vs 6 treatments. Interesting, what did you onc say about it?0
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Morning everyone:
Welcome Sue from WI - sad to see you here but happy to have you. You'll get lots of information and support here too. Good luck with your chemo today. I too only had 4 TC (and H) treatments versus the 6...my onc agreed that the 4 is as good as 6 - I was so happy and hope I don't regret it later on but maintaining a positive attitude. I asked my onc about the potential for ovarian cancer and she said not to worry - because of my age (61). As Omaz says, DRINK lots of fluids. Most of us kept it around 100 ounces a day during treatments.
BTW, my sleep pattern has returned to normal finally!
I know this isn't the blog for it, but I am happy to report that the cold caps worked for me. Nearly 4 months PFC (last chemo 6/6) and I have hair. Hooray.
Arlene
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Arlene - So glad the cold caps worked for you! Just out of curiousity, did you use them during both tax and carb? I used the elastogel caps during tax and I lost a lot of hair, probably about 70-80% but it came back in quick and I thin that was the benefit for me.
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Omaz: I too used the ElastoGels and from what I see, there isn't much difference in the two except for price. I too lost 70-80% of my hair but because I had so much to begin with, I never got bald just thin. I used them 1/2 hour prior to infusion and for several hours after infusion and tried to do them for a few days after but that didn't always work. I never needed a wig or scarf so I'm happy. AND, as you say, the new hair is coming back in fast and furious and rather wild.
I definitely think the caps make the hair come back quicker.0 -
I am now on week 2 of anastazole and hoping that it continues as easily but I know it takes months for the SEs to start in but I am having some hot flashes - yuck! Hard to believe we have to take this stuff for 5 years! Maybe that will change eventually like reducing chemo to 4 versus 6 and possibly dropping the Herceptin down to 6 months versus a year....hoping that protocol happens soon. I'll be having #8 on the 10th.
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Arlene - I am 9 months post final and just had my 5th hair trim. My hair is still fluffy-wavy but I can see that the new hair is coming out straight and very similar to my old hair. Also, mine came in almost all white but now it is getting more and more of my brown/darkblond/gray color back (happy about that). I think it will take about another year to get it back to chin length.
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NancyJill I too get a fingerstick (to check CBC) before each infusion and then get blood drawn from my port in the infusion room to check the other "stuff". I believe they get quicker results with the "stick" so they can make sure your counts are ok for them to start the chemo.
Welcome by the way!!! You will get a lot of help from the gals here!!!
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Another year until chin length. Mine was down to my bra line so I have a LONG time to go but I'm happy! Hair does keep your mind off other things though!
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