TRIPLE POSITIVE GROUP
Comments
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homemadesalsa - I am so glad it was approved for adjuvent use and that you are getting it, as I think it is a valuable addition to the arsenal of Her2+ controls. This new FDA approval makes it less of a fight with insurance, because who needs to worry about that on top of all the other stuff we worry about, right?
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Laughinggul - I would highly recommend a 2nd opinion to get as much info as possible to help with your decision. My current PS is very different than the first one I met; I am so thankful I went for a 2nd opinion.
I was not eligible for a lumpectomy because I had 2 tumors far apart and enhancements on the outer quadrant. Imaging indicated the tumors were completely gone after 6 months of HP so I questioned why mastectomy if the cancer is gone? My MO told me flat out that for me, the mastectomy was the difference between dying from breast cancer or surviving. They were very concerned that there could be cancer cells remaining in the breast and thought the safest option was mastectomy. I accepted that choice readily but then starting thinking about getting the healthy breast removed too. All my doctors, MO, BS, and PS advised against that because I don't have any risk factors and it would increase risk during surgery. My BS did say that if I was anxious about getting cancer in the other breast and felt strongly about removing the healthy breast she would support my decision. All my doctors said repeatedly that the decision was MINE and I really appreciated their support.
I met with my BS and PS 3 months before surgery and had multiple consultations because I was so conflicted between single or double mastectomy. Both surgeons spent a great amount of time with me and explained in detail all my options. They showed me pictures and gave me different scenarios. The best part was how patient they were with the many questions I had. In the end I decided on Unilateral and am very happy with my decision. I had clear lymph nodes and margins but pathology did show a few single cancer cells in the breast tissue that was removed. I did not need radiation. I feel a sense of relief in having the breast removed and am grateful my doctors explained the reason behind their recommendation. I never had an attachment to my breast so never felt a sense of loss. I had DIEP recon 2 weeks after the mastectomy and revision surgery 5 months later. I never had any infections or issues with any of the surgeries. I love my new body and am please with everything my PS has done. I get my 3D tattoo in July. Coachvicky provided a great summary of what to expect from a mastectomy and recon. There are a number of forums specific to mastectomy and the various recon options. I found these to be very helpful as I was trying to make my decision and also post surgery.
As you can tell from the other postings, we each have a unique experience based on our unique situation. Our bodies are all different, the way our bodies respond is different and the options available are all different too. This decision is difficult for all of us but for me personally, I put my faith and trust in my medical team because they are the experts. I felt at peace once I made the final decision and had no fear going into surgery. This is a personal decision and very much a "gut check".
I hope you find a sense of peace with your decision as well. Hugs0 -
Posey - your latest felt picture is so darn cute! I think a creative outlook is so therapeutic. I love to crochet and hope I can get back to it once my shoulder heals
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Suburbs, how are you doing with the latest round of antibiotics? I hope you are turning the corner and finally getting rid of that infection!0
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Hi peoy - welcome to our group. I participated in a clinical trial and had 17 infusions of Herceptin and Perjeta over a one year period. I did not have chemo. Insurance paid for both drugs. My MO recommended this protocol based on my results of a Mammaprint which is a test that identifies risk of recurrence in triple positive patients. I did well on both drugs, had minimal side effects and responded well to this treatment.
It seems treatment including Perjeta varies by MO. I wish you the best, hugs
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Coachvicky - I want to marry your husband
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Hi everybody. Blownaway, that made me laugh. A good funny and high praise indeed.
Deni1661, so far so good. I am tolerating the antibiotics and my blood work is holding up. I am told it is a slow growing bug and will take a while to resolve. it could take weeks or months. I'm trying to stay on track and not get too down about it. I appreciate the well wishes. How's that shoulder rehab going
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You will have to stand in line to marry DH. I just know at my funeral my girlfriends will be hitting on him. That's why I have drafted my obit stating I passed from chronic and multiple sexual diseases.
And thank you. He is a wonderful man and I realize I am fortunate.
Vicky
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HapB
Good for hanging up! Isn't it gift to hear that response and know parting ways was the right thing?
Decades ago, in another relationship, my soon-to-be-ex said if I didn't divorce him, he would pencil me in for lunch twice week.
I wanted someone who would "ink" me in and not just twice week.
Vicky
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Coach, you are a hoot. My DH is also one in a million. On a more pressing issue. I am day 8 after my first round of TCH and dealing with diarrhea which had been proceeded by awful constipation. (Sorry TMI) I am trying to find balance here. Any suggestions for what might taste good? I’m doing the applesauce, toast and rice thing but want to get back to normal before my next treatment. The oncology pharmacist has been very supportive but I know it will be a challenge
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Hi ladies
Suburbs, thanks for your reply. I am realizing that yes, I need to ask a lot more questions to fully understand what my situation is. I am going for a second opinion too. Dont know why my axillary dissection is a given, maybe because I had a biopsied node there that was positive from cancer since the beginning. I was also going to ask you about the antibiotics and how things were going. Sounds like you are being patient and keeping at it. Wish you best dear. Keep us posted!
Vicky your remarks are also very useful. My breasts are small but lumpy and dense..they have also given me trouble all my life. Sounds like mammograms are useless for dense breasts and I can´t understand why they dont recommend other diagnostic tests for people like us....too late now. I will see the PS next week and I will show up armed with questions. Thanks again.
deni1661 thanks to you too. Your story is very encouraging. Now I wish I had started asking questions earlier. I am in the process of going for a second opinion.
I also want to welcome the new additions, Peoy and Christa.
@Peoy: I will also do Perjeta plus Herceptin until I complete one year but I have no idea how my MO made that determination.
Love and peace to all
LaughingGull
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For those days of constipation, I took the following:
Super Colon Cleanse Supplement, 500 mg and Best Naturals Cascara Sagrada 450 mg. Go very slow until you find the right combination. Make sure your Oncologist approves.
I ordered these from Amazon.
Best wishes,
Vicky
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Hello there,
This thread is so alive - I haven`t been here for only a couple of days and there are 3 or 4 pages to read!
Trisha-Anne I can give you a receipe for golabki and pierogi if you wish, easy to make but time consuming. I especially love golabki, I can eat them in any amounts
Re: my headaches - I still have them and it`s starting to worry me. My onc said it`s probably SE of treatment but ordered a CT of my head. I`m having a massage tomorrow for my spine - maybe the stiffness of it gives me headaches as well? Of course I started to think I have mets in my brain - do you think there is a high risk of developing them if I`m stage IA, grade I?
Strange thing I can`t understand - as HER2 positive tumors are considered to be agressive, I`d expect it to be more like grade II or III, and mine was grade I, with mitotic rate of 1 point but hi Ki67 - 50%. Does it make sense to you?
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Chiming in here on the lumpectomy vs mastectomy decision. I had a 1.1cm tumor found on mammogram. had a lumptectomy and sentinel node biopsy, which was negative. Unfortunately, margins were not clear (DCIS only) so i had another excision. margins still not clear (DCIS only). surgeon suggested i start chemo (THX12) and have surgery after, giving me time to make the surgical decision. I thought it would be a super easy decision to do the BMX as i am a single parent, but it ended up being more complicated for me. I have no known genetic risk factors although I do have an aunt who had breast cancer at a young age. I did insist on an MRI and had two biopsies from that, both of which were negative. I did a TON of research (surgeon said he had never given a patient as much info/studies as he gave me) and had a second opinion. No doc (at my major cancer center or at the teaching hospital where i got the second opinion) recommended a mastectomy other than for "peace of mind". I do believe there are other GOOD reasons to have one, but I ultimately decided against it. I'm happy to PM with you regarding the reasons for my decision. I had another excision in Feb (which was clear, thank g-d) and radiation, which i JUST FINISHED TODAY!! woohoo!!!). I start tamoxifen next week and will be receiving herceptin infusions thru October. It's very personal and if the final pathology had come back positive I would have gone ahead and had the BMX. For me this decision was the hardest one I have ever had to make, and was as hard on me as the physical treatment.
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Thanks for chiming in, red332! Yes if you want to PM me I would love to hear about your reasons.
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KasiaK thank you for the offer of golabki and pierogi. My mother did teach me how to cook them (over 40 years ago now) but my husband hates cooked cabbage, and it's so fiddly to make. I will just take myself off to the Polish Club here and have them cooked for me!
Your headaches may be a side effect of treatment, but having a CT will give you peace ((((hugs))))
SpecialK will be able to answer your question regarding grade etc - she has a lovely knack of making things easy to understand.
Vicky - I also have a wonderful hubby. When I had my first mx he told me it was me he loved, not my breasts. He couldn't care less if I had one, two or none. He cried for me as I was going in for the anaesthetic, and I hadn't really cried up until then. During chemo when my emotions were a mess, he just held my while I cried and didn't try to "fix" things as men sometimes want to do. He just held me close for as long as I needed it. We are sometimes blessed with wonderful men.
Trish
xoxo
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Jstarling, have you tried citrus? Oranges, adding in lemon or lime to foods or getting foods that are flavored like them. It always seems to taste good! I also really like greek yogurt cause it's tangy & eat that with oat bran with a little bit of maple syrup and brown sugar added in. If your mouth can handle a little bit of a chili pepper type spicy, just adding in tinnnnnyyy bits of it can really bring things to life. It seems like foods that make my mouth feel things are better than foods that just have flavor...if that makes sense. I also do better with things that have few flavors in them, they can be strong flavors, but some of the dishes I usually like that really rely on a blend of flavors, my mouth doesn't seem to understand them anymore. For plain things you haven't mentioned I really like cream of wheat (farina cereal) made with milk when my stomach is really bad. I've also dealt with the constipation followed by diarrhea every time. It's so annoying! I pretty much start taking miralax the day before chemo and keep taking it until switching to the Imodium for the diarrhea.
& to add to the pierogi conversation, I've been eating lots of store bought frozen ones. I almost forgot to add them to the list of foods I always seem to enjoy. Now I'm wishing I had some homemade ones, though, they might be too tasty for treatment mouth to even appreciate right now!
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hi all,
its been a while... to the newcomers,welcome! i have a question,is blurry vision a side effect of chemo or herceptin? my vision is worse! way worse
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Jstarling: I second the citrus recommendation. Foods that usually tasted good to me during TCHP were: citrus, tomato-based foods, and mexican food. Certain times I also had sensitivity to food textures -- cheese and processed meats felt terrible during that time.
For the constipation my MO recommended "Smooth Move" tea. You could find it at any grocery store. It taste like dirt but it worked w/o working too well. On those days when I thought I might become constipated but wasn't sure, I took a stool softener. Many of us had a rough time trying to balance diarrhea and constipation. Good luck!
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Jstarling, I will add that I read about gummy fiber on my chemo group list and took those during chemo. I also followed SpecialK's advice to protein load in between cycles. Try to get as much protein in as you can and drink lots of water plus electrolyte water. It's really hard to eat properly when you feel rotten and nothing tastes good. Hang in there.
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Kae md99 - I too have blurry vision ever since I started chemo oct 17. When read too long, becomes blurry. Rest my eyes for awhile, sometimes Ok, sometimes not. I finished chemo 12Feb and only these few days, vision seems improving.
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kae - I too had blurry vision during chemo, and spoke to the PA at my MO's office about it. He said that it can indeed be a side effect of chemo, as the meds actually cause the lens of the eye to change shape. And that it will resolve after chemo is complete and the drugs leave one's system.
I am about 3 weeks PFC and my vision seems to be improving already.
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Kae, my vision changed twice last year and I need to have my eyes checked again as my script keeps changing. Yes, I have had blurry vision. You might have that checked out and report to your MO. Good to hear from you.
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Christa welcome to our board. The ladies here are amazing!
For those of you thinking lumpectomy vs. Mastectomy I second searching for posts by Beesie. Her thoughts helped guide my decision.
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I have to admit that I ate a lot of Mexican food after each chemo treatment. The metallic taste from chemo made it difficult to find foods that tasted good. It usually subsided after a few days and I could return to eating other foods.
Change in eyesight is a side effect of chemo. I could tell my eyesight was changing and occasionally my vision would be a little blurry if I was doing a lot of reading. Eventually my prescription was back to normal. In fact, I recently had another eye exam and my vision has improved significantly. The eye Dr suggested it was all the medication I've taken. Haha! That would be the first good side effect of Anastrozole.
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kae, i had blurry vision the whole time i was on herceptin. It was horrible. I was told it is from your eyes drying out. I used imitation tears and that would help a lot.
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shela,
we ended herceptin about the same time but my eyesight never improved.MO was told and she actually does not know what caused it. advised me to have my eyes checked 2 months post final herceptin “ just in case H caused it”...has your eyesight improved
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My eyes water all the time from Herceptin and my nose runs too, definitely not dried out. My MO said to wait until chemo was completed before checking eyes out. My prescription has def changed but it has gotten better than it was when I was getting chemo.
As for Perjeta, I can get it with my herceptin but I had such a bad reaction to it during chemo ( severe dehydrating diarrhea that I lost 30 lbs), even after trying the brat diet, immodium -9 pills a day, so much lomotil that I couldn’t swallow for 4 hours, some crazy drug that made me react like I had stroke to finally an $8,000 shot that worked, in my 6 th round. My MO said no more Perjeta and my new MO said he would’ve stopped it at the 4 th round.
TGIF, I work as a substitute teacher and these kids can smell summer almost here! It’s going to be a long 2 1/2 months
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Trish ... Thank you for sharing your story about your husband. When you meet my friend, please tell her.
Cabbage is like cilantro ... it is a love / hate relationship. I love both. I love all food.
All ... I think these vision changes are more widespread than oncologists admit or know. I have gone from -2.50 to -0.75 in my contact lens prescription since chemo in August 2016 and my eyes are still correcting. Last Christmas I could not read the directions on the back of the Kraft Marshmallow Cream jar for Fantasy Fudge. This Easter, I didn't even need a contact in to read it! BTW, I only make this on holidays for gifts.
Vicky
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kae, no my vision has not gotten better. It actually had gotten worse. I've read some has gotten better but not mine. It could be from getting older but i prefer to blame chemo! Lol
So my hot flashes and night sweats got so bad i felt like i was on a solid hot flash all day. My MO started me on Effexor. So far it is helping. A few SE from it, but manageable. Anyone else here take this?
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