TRIPLE POSITIVE GROUP
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SpecialK, I’m thinking of you and wish for you the best of results.
FTM, if you are comfortable sharing your diagnosis you can post it by going to your profile and making it public. That way people who have similar diagnosis can chime in with more info, just a thought.
I’m headed to the BS today to get my port out, 53 weeks after it was put in, hoping I never need to get another one. I finished my last infusion of H&P on August 1, my hair is looking good, my nails are “close” to normal and the dreaded noise drip has slowed way down. I’m almost through with everything, other than the darned little pill I take everyday and the darned big bill I take weekly, last on my list is my tattoo which is in December. 😁
Hugs to all.
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MACTAZ, very nice to know you are doing great!!!
My wife finished her last HP on 07/05 and she is thinking about get the port out as well. We will see the MO late this month to make the decision.
If I remember correctly, you had PCR after the neo-adjunct therapy, so you even did not need to think about the possibility of taking Nerlynx, am I correct?
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mactaz - here is some info about metformin and breast cancer. I took a statin for about 5 years before diagnosis with breast cancer, and one of the unfortunate side effects for some is elevated blood sugar. I am one of those who ended up with this, and it persists even though I have been off the statin for quite a while, so metformin makes sense for me beyond the breast cancer aspect.
https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-018-0974-2
https://www.ncbi.nlm.nih.gov/pubmed/30903363
https://www.sciencedirect.com/science/article/abs/pii/S0147027219300479
Thanks all for the good wishes, appreciate it!
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Thanks for the info SpecialK.
LilyChi, I did have a complete PCR but still was prescribed both Herceptin and Perjeta as adjunct therapy primarily due to uncertainty about node involvement. My OC wasn’t sure they would approve Perjeta but they did so I assume was due to the node uncertainty issue. No one ever mentioned nerlynx to me, so not sure why. Hope all is well with your wife. My port is out, did it at doctors office and it was easy. So nice to be free of it
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Hi SpecialK
I also had elevated alkaline phosphatase a few months ago, this was a month after finishing H+P and before I started Nerlynx. It resolved on its own. It was gone the next month, but I was a bit freaked out. Hoping your numbers come back to normal on their own or there some benign explanation. You surely have a convoluted medical history.
I wanted to say hi to everybody else as well....lost track of the new names and stories. I had a great summer and I am in my 6th month of Nerlynx. Enjoying life, working out, hanging out with family....
I worked out during radiation, no problem at all. I never had fatigue from radiation, or at least I didn't notice.
LaughingGull
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Thanks. I have changed my settings to public. Still getting used to the site. My initial core biopsy looked like it was triple negative but the formal specimen showed triple positive so I’m just trying to figure things out
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laughinggull - my ALP was normal in late 2018 at 45 (range is 20-140), rose to 114 in Mar 2019, then 171 in June 2019. It has dropped to mid-150’s on the two most recent looks in July and August, but has been elevated for a minimum of five months, and hasn’t dropped in the last six weeks. I have no way of knowing when it started the incline as I had no blood work done between Oct 2018 and Mar 2019. Coinciding with this is also wacky white cell counts - low WBC (below the range), and high mono%.
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Hi Ingerp and Special K!
I apologize for not replying sooner but haven’t logged in since my last message.
Special K, yes my Breast Cancer Index showed that additional years (10 total) would be highly beneficial . My Onc. doesn’t think I will need more than that but....he said there are always ongoing studies etc...
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Mine was 157 in March and went down to normal range (i.e. under 120 but not sure which number although I will check in the next few weeks) in May. Scary stuff for sure. Hopefully it will be something else.
I REFUSE to think for a minute that you may be facing a recurrence
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SpeicalK and LaughingGul, sorry if I did not follow up closely, but why is the Alkaline phosphatase measurement important? it seems the range is from 45 - 117.
Thank you
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Hi LilyCh, I had never heard of it until I finished treatment with H+P, and my care was transferred to my primary care physician. The first thing she did was ordering blood work, and she told me that I had my alkaline phosphatase elevated, and casually mentioned that this indicates "bone activity", which could mean bone mets, or your bones dissolving, or something else. Charming!
Since now I am on Nerlynx I am back at the MO and I am getting this checked once a month. Seems to be back to normal.
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LaughingGull, thanks so much for the explanations. I went back to check my wife's blood tests, it looked like Alkaline phosphatase is just one of the quite many parameters and the MO always ordered the "comprehensive" blood test right before each HP infusion.
Thanks again.
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lilych - an elevated ALP can also signal liver issues, and is one of the main reasons oncologists look at it, particularly during chemo and afterward. The majority of chemo drugs are excreted through the kidneys or liver as waste - a CMP (comprehensive metabolic panel) shows values for both organs and elevated values can mean there is trouble. It is expected that there will be some minor elevation during chemo, and for some time afterward, as many have an impact from treatment, but smart docs watch these values for a while afterward - or in my case, still at year 10 - to make sure everything is going well.
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SpecialK, thanks so much for the explanations, really appreciate it!!
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Hi all,
I need to make a decision for single or double mastectomy.
BRCA negative, triple positive. Age 35 years. Grade 3 tumor.
I am inching towards unilateral. Any feedback is welcome.
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Size of tumor? Boobs size? Are you a candidate for nipple sparing mastectomy?
How did you find your cancer? In my case, my cancer didn't show up in ultrasound mastectomy, MRI, or in exploration by my very thorough and experienced breast cancer surgeon. I only found it myself once it was big and had already spread to axillary nodes and it was palpable there. So I knew I would not trust any imaging of my other breast, ever. Plus the reconstruction was going to look terrible.
Sorry you are here, especially at such a young age, and best of luck with everything.
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Laughing Gull - one tumor size 2.4 cm , adjacent tumor about 1 cm. Small breasts. I am not a candidate for nipple sparing MX.
I felt the tumor myself and then came all the imaging.
I see that you have had Oophorectomy as well. you are so brave!
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Neeli, it certainly is a personal choice and it seems you have gotten good info to help (BRCA). Maybe there are others that can suggest some other things to consider.
For my decision, I decided on a unilateral. Why, I’m not sure I have a good answer, I had two tumors along with DCIS in my right breast and I was ready for that one to be gone, but I just wasn't ready to give up on both breasts. I know I have to have mammos regularly and have a risk of recurrence, but just decided for me it was worth it. I also was concerned that they would look very different, my PS said that there are several sizes and shapes of implants that he would take into surgery and find the best fit. I was rather large, DD, and wanted to go smaller so my plastic surgeon also did a reduction and a lift. My PS also did nipple reconstruction and I will be getting a 3D tattoo in a couple of months. I’m currently between a size b and c, and I love it. I considered not having a nipple reconstruction but with having my natural breast i just felt I wanted the balance. It did take 3 surgeries (mastectomy and TE, implant and reconstruction on left side, then further revision on existing breast and nipple reconstruction). But I’m really happy with the results. Again, all these are personal decisions, I'm happy I did a unilateral but I just wanted to walk you through my experience . Best wishes
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Neeli, one other point, i knew that I would loose feeling on the side with the mastectomy, but I didn’t know that I would also loose feeling on the reconstruction side. I have feeling in my nipple and in some areas around that but am numb in many areas. PS said might get some feeling back, but no promises. That is the hardest thing for me to get use to. I’m not sure if you would have any reconstruction on the natural breast if you decide on a unilateral but just wanted to point that out.
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Thank you Mactaz for walking me through your experience. I am glad you are happy with your results.
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NP Neeli, when I was trying to make my decision I just couldn’t find many people or posts with unilateral MX. If you have any questions don’t hesitate to ask me. You can private message me also if that makes you more comfortable. Take care and thinking of you. Hugs
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Neeli - So far the Livestrong classes have included warmup exercises (choice of things like treadmill, bikes) and then intro to exercises for arms & legs and stretching at the end. I had about 6 weeks of radiation a year ago and was sore the last 2-3 weeks so I may have had to adapt some exercises. My WBC was a bit low during radiation, so I would not have chosen to be in the class then. I walked and did some arm exercises and stretches at home during radiation.
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I need some input. I met with the radiation oncologist today. I go back on the 30th for a CT and radiation will start in October. She doesn't seem like a real proponent for radiation. She told me of side effects including permanent damage to my breast that cannot be cosmetically repaired. She also mentioned lymphedema. It would be 6 1/2 weeks of treatment and I don't know if it's worth it. I have a 7mm mass that was too close to the skin to remove and it's DCIS. She asked me why the mass wasn't removed and I answered radiation should get it, right? She answered Let's hope so😲
I start Kadcyla Friday.
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Dawn, definitely get a second opinion. You need a radiologist who explains everything you want to know, and will do so with respect. I'd be very uncomfortable with the flip answers. Also, there is a shorter radiation protocol which is about 19 rounds. That is what I had. Might be good to see if you qualify for the shorter. Hang in there!
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Hello, my MO recommended the same. 14 cycles of Kadclya after already doing 11 cycles of Herceptin. Just waiting for approval from my husband's insurance company to see if the drug is covered 85% with a total cost of $100,000. Then I must have administered every 3 weeks at a private clinic since the hospital cannot administer. Just how its done in Canada and now my case qualifies for the use of Kadclya (residual disease after doing chemo from the tissue pathology report when breast tissue removed in mastectomy).
I feel like I'm getting the works....very scary quite honestly. Now have also been recommended pills of Letrozole for 5 years min (10 years....to be seen)....and then Zoledronic acid to help build bone loss and also helps to be used a part of anticancer treatment to prevent breast cancer from coming back.
I completed last week 30 rounds of radiation. Feeling very tired but hanging in there.
Will let you know any side affects once I start Kadclya.
best regards,
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did 30 rounds of radiation. Skin is not too bad, it looks tanned....just letting you know. worse side effect is the tiredness. If you're thinking of the radiation, don't be afraid. My radiation oncologist recommended lotion two or three times per day and it worked quite nicely keeping the skin hydrated.
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Cowgirl 13, I met the radiation oncologist in June for the first time and I got the impression then that she's not big on radiation therapy which my BS and PS aren't either but MO scheduled. My BS is of the mind with only 1 positive node and the mastectomy I may not need radiation but that was prior to the DCIS that I've read should respond to radiation. I'm just very confused now.
countca04, I'm on the same protocol as you are including the Letrozole.
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I would like to hear how you do on kadclya, that will be my next line. I have been on a Perjeta and Herceptin every 3 weeks for 3 years now!
Best
Kathy
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neeli, you can start doing the unilateral mastectomy, and you can always do the second one later. I did that. In the beginning I was happy to keep the healthy breast, it was only down the road that I clearly felt that I wanted that one out, too.
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dawn, please fire that radiation oncologist; get a second opinion! Unbelievable. Find someone else who can explain things better to you.
countca04, I was in the same boat and they said no to Kadcyla for me, I would have taken it otherwise, the numbers are just fantastic on that drug preventing recurrence. Hang in there!
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