TRIPLE POSITIVE GROUP
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Just to add, each time I see my BS his office makes the next appt. Appt is independent of the other docs.
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Sara,
My team said that whatever part of treatment I'm in, that Doc is the "point" on the team. For instance, during the MX stage, everything went through my breast surgeon...now I'm in chemo, so everything goes through the Onc...once I start radiation (even though I'll still be on Herceptin), my Rad Onc will be point and everything will go through him.
Once I'm done with that, I'll be back under the Onc until done with Herceptin. When done with that, he gives me back to my General practicitioner with 3-6 month visits...
I can see any of them anytime I want to make an appt, but they prefer I primarily use the point person..
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Hello ladies,
I too am a triple positive. I'm done with chemo, radiation and herceptin. Now I'm in for the long haul on tamoxifen. Dealing with mega hot flashes, but glad to be alive.
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Welcome Chan!0
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Well I talked with the onc nurse about a hysterectomy and my info about when my mom started her periods (when she was 14, same as me) and she didn't hit menopause till 55. 8 years older than I am now. The onc nurse is going to set my next appointment with my oncologist in 3 weeks when I go in for herceptin only to discuss this. She did say the goal was to keep my period away but she was more comfortable with the Dr discussing this with me and said it may not be a bad idea.
She also said she wants me to talk with a geneticist because of all of the cancer in the family and me having 2 boys.
Other than that number 6 went well. I was there from 9am till 6pm by the time I did labs, met with the onc nurse and had my chemo. I am tired and will go to bed early!
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Welcome Chan! TonLee... I got tired listening to who got you... but got a giggle how it sounded like pass the potato! Our lives are sad in a funny way sometimes!
My RO tried to act like she was in charge... won't she be surprised when I cancel my next appt with her. I don't see the point... she has never done an adequate physical exam and never orders any labs or tests, so poo-poo her. Saralmom - my RO must know yours... she tried to act like she is in charge too... must be hard "just" being the RO.... LOLNora - that's a long day!! Hope you had a restful night of sleep!!
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My ro and I laughed about how rads are the clean up crew. He's so cute! Made it through first week of rads fine. Mon and ties off as i'll be attending a reading conf in raleigh. Libraylil
Welcome chan.0 -
welcome chan Congrats Nora on #6 being done. BTW the hosp called for me to come in for my pre-op testing labs, ekg, and physical. I refused and told them I would fax them everything from my Docs here at home, and they were not happy. Said I needed to meet with their doc for a pre-op physical... I was like...really? Like I dont already have enough docs! I still told them no and insisted they get all their info from my surgeon. As much as I like to think they are all in it for my health and they care a bout me, the medical world is still a profit making business. Sorry...just a little rant this morning.
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cellomomof5 - our diagnosis and stats are very close. I am glad they got your nausea controlled. I also had AC but then Taxol/herceptin and tamoxifen. So tell us all about what the T-DM1 is and how it is given, over what period of time, with the herceptin????
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carberry - My BS office said they had to have blood work within 30 days of surgery, maybe that is their concern?0
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Leanna,
Are you saying I'm long winded? buwhahahaha
Welcome CHAN...love the tat!!
General question: Wow. I haven't had any finger or toe pain...until yesterday...my right toes are sore, nails are completely normal, but SOOOOOORE...does this mean I'm going to have issues with them?
Experience? Opinion?
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Chan sorry you are joining us but congratulations on passing the 1.5 year mark.
Carberry the med professional support staff are on auto pilot. The tell you what's standard. Unless this is a private practice they have "people" that take care of the "sales." Most doctors I know at treatment centers/hospitals are so busy it's hard to get an appointment unless it's an emergency. Right now it's a 3 week wait for my BS! Omaz is correct that they need to do blood tests before surgery. I don't know if it's a month before or less. My SIL told me that before my BMX. She's a physician.
Nora is DONE! happy dance for you.
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Sorry maybe I didnt explain very well....I know they need the labs and ekg...but they wanted it done at their hosp an hour and a half away...instead of letting me send it to them. I have labs done every time I go to onc. and have extensive heart studies due to the herceptin. Your right they are on auto pilot..the girl on the phone was just doing her job and following the standard practice for everyone coming in for surgery. My friend just went in for back surgery and she had to do the same thing. Said the doc came in and asked her a few vague questions, that were already on her physical and the paperwork and that was it. Anyway..that is my mantra since all this happened, how to keep the costs down...I have a co-pay for everything I do and its adding up. Thanks for listenening
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carberry I understand. My treatment center is around 5 miles away, my PS about 2 miles. It's till time, gas, parking fee or bus fare.
I ran into the auto pilot/too lazy to check support staff yesterday. My NP said I don't have to see the BS for a year because she and the onc will be seeing me every 3 months. I called the BS office to check. Miss ditz on the phone (the one that gave me someone elses blood test request before my surgery) said "oh well as long as you are seeing someone then it's OK."
I'm thinking how the f*&# does she know. Then she asked if I would like to speek to the nurse. I explained the situation being on herceptin that I will be seeing the onc every 3 months. The nurse said "That's a good question. I'd like to know the answer to that too. We don't have that many HER2+ patients so I don't have the answer for you. I'll check with the doctor."
I could give you a list of stories regarding bad support staff issues. (Did I mention the one that signed me up for the wrong type of biopsy!?) but this post would get too long. I highly recommend asking to speak to the nurse if you are doing something that isn't standard.
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lago and car berry. I only seem to have that problem with the bs office. I have An appt with him in July. The office was supposed to schedule a diagnostic mammo on that same day at the radiology fac. of course they haven't done this. I've already called once and will be calling again this week. The last time this happened they scheduled them but at different locations on the same day. The once and ro offices are so organized. I told the bs scheduler to schedule my January surgery at their ills facility. That was fine with her. When I saw th bs pre op and said i'll see you in pineville on tuesday found out I was scheduled at the main hospital. Just annoying. Libraylil
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Can't you just schedule your own then bring the request with you or have them fax the request over?
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Blondie45-
The way I understand it is that T-DM1 is a combined molecule of herceptin (T) and maytansine (DM1), which is a chemo drug. They have managed to "link" maytansine (which was originally too strong when tried as a general chemo drug in the past) to herceptin in a single molecule, so that the DM1 takes a targeted therapy ride and only works on HER2 overexpressed genes. It has been very successful in trials for Stage IV metastatic cancer, particularly where herceptin has stopped working. Now the idea is to see if it can be used to replace a Herceptin/Taxol regimen to give comparably strong outcomes (if not better), with less side effects. It's early days yet - FDA has not yet approved an early rush to a big clinical trial, so this is a small study being done worldwide at a few centers to see how it works in earlier stage HER2+ cancers. I got lucky: a parent of one of my students is a colleague of the head of breast oncology at Dana Farber. But I do realize that it takes a leap of faith to join in - especially when the options of AC-TH or TCH are tried and true at this point.
The link is http://www.cancer.gov/clinicaltrials/search/view?cdrid=685328&version=Patient&protocolsearchid=8882253
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Hi, I'm writing for my wife Liddy who is on TCH (just finished tx#2). We're in Atlanta but went to DFCI for a second opinion consult and were offered/considered the T-DM1 trial. But given that 4xAC has to precede T-DM1, we just went with TCH. I understand the goal is to do just adjuvant T-DM1 eventually
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Welcome samdobbs - How are things going with the TCH?0
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Thanks Omaz. So far so good, thanks entirely to the excellent and generous advice of you all. Liddy had some tolerable SEs first 7 days after tx, followed strict regimen of 128oz fluids daily, continuous walking around, claritin every 24hrs to help with neulasta, prochlorperazine at the slightest sign of queasiness etc. Also doing cold caps 2hrs every day (figure it cant hurt). Thanks again
Sam
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samdobbs - Good news! I also did cold caps (elastogel) during taxotere. We weren't able to keep my head cold enough during the first tx but kept using them through all the rest of the treatments. I lost a lot of hair but it never fell out in clumps, just if I tugged on it some hairs would come out. Good thing was though that it came back in very quickly. I never shaved my head so my hair stylist was able to blend my remaining hair into the new hair so that I was able to head back into the office without a cap or wig at 6 weeks post chemo. My husband was the cap master and did a great job!0
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Omaz good to know you were able to keep your hair. A couple of people on the coldcaps thread were (are) very helpful with detailed instructions on using dry ice etc to handle the elastogel caps. But we have found that keeping the right temperature range is the trickiest part. Are you continuing Herceptin now? And/or rads/tamoxifen?0
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samdobbs - I just finished rads about 3 weeks ago. Went pretty well. My skin held up fine I just got some lymphedema in my arm that is hopefully temporary as things heal from the rads. I wear a compression on my arm during the day. I am getting herceptin infusions until next Aug. Am supposed to start tamoxifen soon. I did get neuropathy from the taxotere so am dealing with that. Will your wife have rads?0
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Omaz yes, rads are in the plan - something I still dont understand, since chemo is supposed to be systemic therapy. We're also checking out Mammosite although everyone is discouraging it.0
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samdobbs - I asked that question and it was explained to me that they really don't know why chemo wouldn't destroy any remaining cancer cells in the breast but the prevailing theory is that the surgery affects blood flow in the breast and decreases the delivery of the chemo to the surgical area. Not sure if that makes complete sense...but the literature shows fairly strongly that lumpectomy followed by rads has lower recurrence than without rads.
I will say that it is important to have a very good rad onc make up your plan. I think this can really help to avoid hot spots and to minimize radiation to non-breast tissue.
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Welcome Sam!
Glad the first TCH went ok. 5 more to go!
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Omaz- Interesting info on the cap. They told me that because my treatment would be very aggressive that there was no way to keep my hair no matter what I did. So I shaved my head before chemo down to about 1/4 inch and went into wigs. I lost pretty much every bit of it, but it has grown back very thick and curly. Best perm I've ever had!
TonLee- Thanks, there's an explanation of that tattoo on my profile!
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I was also told there was no way I could keep my hair. When it started coming out I just had it all buzzed off. Since round 6 was on Friday I am anxiously awaiting regrowth, whenever that may be!
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chan your tattoo is awesome. I want one with some significance when this is all over but am too chicken. libraylil0
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Thanks LL! I was surprised what a piece of cake getting the tattoo was after all the biopsies, IV's and other stuff. I gave a lot of thought to it first and then sought out an artist who specialized in traditional Celtic tattoos.
Nora, congrats on reaching the end of your chemo! It takes about 4 to six weeks after that before your hair starts coming in and when it does the first stuff is like duck down, but then the real hair grows in. I love how mine is coming back, super thick and wavy. Just wish it grew faster because I kind of look like Barbara Billingsley (June Cleaver of Leave it to Beaver) or Haley Mills (The Parent Trap) right now!
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