TRIPLE POSITIVE GROUP
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sorry you are joining us whywhy, but welcome. This site is amazing for info. As Vicky said this is one of the only places that i get my info from. I also suggest asking tons of questions and never leave an appointment until you are happy with the answer you get.
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Moodyblues...congrats on being promoted to implants! Waiting for the surgeon, yuck...I would be ticked too.
Welcome whywhy, tough decision. I was in that boat 18 years ago and chose the oncologist. Saw his most and his plan was better for me at that time.
Itchy scalp...omg...hurts to scratch but if I don't, drives me nuts. I have put everything on it I can think of, no relief. This did not happen 18 years ago. Is it Taxol or Herceptin
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Cherry I will write my letters of complaint to him when I am through with him and he is through with me. I still may do the other breast after genetic testing is through so, I am being extremely patient with this man. He is so lucky I am not 18 because I would have given him an earful and it wouldn't have been pretty. I guess when I look at his work and how good it is and realize how I have had no issues with infection, TE pain etc., I have just tried to overlook his sorry timing and arrogance. I guess, in my mind I'm giving him grace which he probably doesn't deserve but somehow I am still able to give. I am amazed at my patience with this bald man!
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Whywhy- never underestimate the value of a second opinion if you are feeling unsure. I traveled to Dana Farber for a second opinion, just to give me peace of mind. It changed my treatment completely, so there is a standard of treatment but there are variations on that standard as well as trials. I ended up traveling there for my entire treatment (and I fly) but it was completely worth it. I can't speak to the satellite hospitals for DF, but I have only good things to say about going there to the main facility in Boston. My MO at DF that I met the first time said she would tell me if my local treatment standard was the same as her recommendation and would send me home to do it if so. But she indicated that there were several things she would do differently. You get the benefit of their full tumor board (and I would expect the satellite hospitals do as well.) They were also amazing at fighting my insurance for some of the newer treatments (Perjeta at the time) as well as Neulasta during chemo, etc.
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moodyblues, you have my approval to give him an earful or at least inform he that he truly does deserve one, but you are right, you do it after. Still cannot believe that a doctor can be such a jerk and get away with it so easily.
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kimcee, have you tried almond oil or sesame oil with lavender mixed in it? I used that on my head when it itched and it really helped. Or coconut oil?
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Shelabela, I tried the oils but not with lavender mixed in. Will try that...thank you 😁
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Anyone have a grade 2 triple positive tumor postmenapasal ? I'm doing neoadj. treatment now TCHP, and will have surgery in January. I have no clue if my lymph nodes were involved, my tumor was estimated at 2.1cm. Looking for anyone in a similar situation. I'm not sure if I should do the lumpectomy or mastectomy.
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aleuzing, your diagnosis sounds like mine. I had TCHP neoadjuvent chemo, then lumpectomy after breast MRI said everything was gone, but tne the pathology came back without clean margins anywhere so I then had a bilateral mastectomy and Diep flap restoration. I knew I wanted this type of restoration and it can only be done once so I had both breasts removed. The pathology in tne clean one came back with ilsin situ so my dr was happy I chose to do both. My oncologist said this was the protocol after my initial diagnosis, tne neoadjuvent tchp
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Coach Vicky, Suburbs, moodyblues
- I also felt better if I research and understand the difference choices and risks. I am trying to keep up with all the names. Just realized that for ACT and TCHP, The C & T could mean different things for different doctors (T could be either Taxol or Taxotere, C might be different too). Very confusing. Not as standard as I thought.
- As for anxiety, I starts to feel a bit better with everyone's help. We'll all get through this.
Meg2016
- Thanks for second opinion suggestion. I'll definitely go to DF for second opinion at least.
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whywhy - If AC-T has been recommended, this would be Adriamycin/Cytoxan given together, then Taxol. The AC is usually every two weeks for four doses, then either 4 dose-dense Taxol, or weekly doses. Herceptin/Perjeta are given with the Taxol if this regimen is used. TCHP is Taxotere/Carboplatin/Herceptin/Perjeta. There are also some on this thread who have had 12 weekly Taxol with Herceptin - this is generally used as a stand alone single agent chemo for those with tumors smaller than 2cm and node negative, or stage 1. These regimens are not randomly combined, they are given as per NCCN guidelines - here is the link for Her2+ patients:
https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#56
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Kim cee, I use an oatmeal baby shampoo, i don't have an itchy scalp but as I'm prone to itchy skin I looked for oatmeal. Are you at the shedding stage?
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Binniebin, yes sort of. It's been shedding a lot for over two weeks. I buzzed it two weeks ago and you can see my scalp thru all of it. Oatmeal is an awesome choice, I will try that too. Thank you.
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aleuzing, my diagnosis and treatment were the same as yours. Some patients have node biopsies as part of staging; otherwise, some wait until surgery. Then after surgery, if your nodes are negative, radiation is a must after a lumpectomy and may not be required after a mastectomy. You need a flow chart to keep up. I spent a lot of time researching. Ask lots of questions.
The surgical choice took a long time because with chemo before surgery you have a lot of time to consider your options. I considered all the choices - going flat, implants, and diep. Single or double. There are many things to consider. Take your time and ask questions. The surgery reconstruction threads were helpful, but being triple positive adds another level of complexity. Hang in there.
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SpecialK, you are a walking Wikipedia! Thank you for the link.
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whywhy - you are welcome - not really a walking Wiki, I have just been here for a long time, lol!
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I was originally going to do a trial, they did a second pathology and found that my original pathology didn't tell the whole story. Which changed the course of my treatment, so I am super glad I went through that. I like the fact that at every stage they discuss trials with you, whether you are eligible, etc. If you ask about something they haven't suggested they also are typically already knowledgeable on other trials that are happening.
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Welcome WhyWhy - I too had to struggle with the MO or the facility. I did not click with My MO, but the facility was great and its the RN's that are there for you. I had my first Chemo #1 Tuesday and had the Pharmacutical Oncologist go in with me to see my MO - she did most of the talking - so all is well. Waiting is the worst. I was the queen of procrastination. I waited 3 months after surgery to get my nerve up to start chemo. So far everything is ok. Just extremely tired. (spelling doesn't count in here = chemo brain)
Like Coach VIcky & the others suggested, start on one of the threads like "Chemo in Aug" is a good group, find someone that has the same treatment and follow thier journeys, Write down questions to ask the Doctor. See what works for the ones that you follow - BUT REMEMBER - Everyone Is Different! Each Cancer is different and each SE is different - best of luck - we are hear for you.
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I know I probably have brought this up before about the standard treatment, but I still wonder about it. I didn't get weekly Herceptin during the first 12 weeks of chemotherapy. They only gave me Herceptin with Taxol every 3 weeks. I'm concerned because I can't find that protocol anywhere.
I only ask because I don't see it under the NCCN guidelines.
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TampaBayBucsGirl - Receiving your Herceptin every 21 days while receiving weekly Taxol doesn't mean you were getting less, it means you were getting a triple dose. Those of us that did TCH or TCHP received Herceptin on the same schedule as you.
hap - within 30 days is the optimal window, but not the only window. If you don't start within 30 days does not mean you can't start past that. There is some data that indicates that delay beyond 30 days may lead to less effectiveness, but that is not an absolute - as with many aspects of chemo. Some of us experience delays due to surgical complications, or awaiting test results or problematic pathology. I had 14 weeks between my initial surgery and the start of chemo, due to an additional 4 surgeries in that time frame.
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They said chemo first was standard protocol since my tumor was over 2cm. Also the surgeons are telling me the survival outcomes are similar between lumpectomy & mastectomy, they seem to be leaning towards lumpectomy. I had grade 2 and the staging was uncertain since I never had my lump nodes biopsied I just went straight to TCHP neo adj chemo.
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aleuzing - the reason you are most likely receiving chemo first is that currently Perjeta is only FDA approved for tumors over 2cm when given neoadjuvently. Since completion of the APHINITY trial the maker of Perjeta has asked the FDA to approve Perjeta for adjuvant use for early stage patients, but that approval is still pending and expected at the beginning of 2018.
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LTWJ - Thank you for responding. Did you have cancer cells in you lymph nodes after TCHP neo ajv. too? What type of treatment did they put you on after the mastectomy? Also my ER & PR percentages were really high 90%+, were yours similar?
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Oh my goodness. I totally misread that on page 53. Thanks SpecialK!
My Herceptin treatment is over, and I'm still questioning it. LOL!
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hap - many who do neoadjuvent chemo don't have a clear picture of their stage, but the types of breast cancer that typically receive neoadjuvent treatment - like Her2+ and Triple Negative or someone with a very large tumor, are less likely to have treatment variation that is dependent on stage. In order for aleuzing to receive Perjeta she needed to do chemo first. Anyone with a 2cm tumor that is Her2+ is going to receive a recommendation of chemo with targeted therapy.
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Whywhy,
I had AC (Adriamycin/Cytoxan) every three weeks. My T (Taxol) was given every week for 12 weeks with HP (Herceptin/Perjeta) every three weeks.
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hap - by the time neoadjuvent chemo is determined to be the best course of action, one’s oncologist should have a good idea of tumor size and nodal status, and should order PET and/or CT to determine clinical staging. I personally feel that if a port is being installed pre-chemo, do a SNB in the same procedure to get the most clear nodal status picture if imaging or biopsy has not revealed known positive nodes. If distant metastasis is foun, some patients still do chemo but sometimes don’t do surgery, or do additional surgery - or opt for anti-hormonals as the first line ignores treatment.
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The drug, Ogivri, is not a bioidentical, but rather a biosimilar - a generic made from human cells if you will, of Herceptin. Essentially it is a competitor, and has all the same potential side effects that Herceptin does.
https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm587378.htm
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I would assume that oncologists would have to advise their patients that they are getting a different drug. I don't know if the drug will be substantially less expensive, and whether insurance companies will push for this drug over Herceptin potentially to control costs - and effectively take the decision out of the hands of both doctor and patient.
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ok I am freaking out. Had my blood work yesterday and treatment. Today, got a call from my oncologists office telling me my liver function was high. 161, normal range below 40. Repeating blood work Tuesday. I don't drink and do not take any weird supplements. What could cause this besides mets? Freaked out...node negative too
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