TRIPLE POSITIVE GROUP
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LaughingGull, my oncologist referred me to the radiation oncologist and I trust him. She's located in the same building as my oncologist and where I receive treatment. I'll know more after I meet with MO 9/25.
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hey ladies, I’m trying to decide on what surgery to have. For those that had a single mastectomy, is it odd to have one natural breast and one silicone or saline? I’m 35 years old. I’m half way done with chemo so surgery is next.
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Jkeet, I don’t think there are many of us single MX, I was never able to find a lot of discussion on this. I opted for a single MX and am happy with it, does it feel odd to have a natural breast and a silicone breast, yes. But I can’t say for sure but I think whether you have a double or single there are definite differences in feel that you will need to adjust to. I had my surgery in April, reconstruction of natural breast and placement of implant, then another for tweaks to my implant side removing some excess skin. I’m still getting use to it, but as time goes by I do see myself noticing the different sensations less and less, I think it is something our brains need to retrain on and mine is older.😁
I’m 62, but decided a prophylactic double MX wasn’t for me. No history of BC in my family so I am shooting the dice. I wrote a post on my experience, I think on page 1263 if you haven’t see that which might give you some thought or more questions.
Just be sure you are comfortable with your PS and he has had good results doing single MX. They won’t be exactly the same shape, I can see the differences undressed but not so much that it looks strange. In clothes no one could tell the difference. I attribute this to my PS so I truly feel selection of the right PS is critical, but that is in the case of Dble MX also. Good luck and I’m certainly open to answering any questions you might have. Take care.0 -
Jkeet - I had a BMX so the two sides would match. They don't. I had to have rads even with the MX on the cancer side, so they likely never will. So don't do it for that reason because there's no guarantee. I think a lot of women who do UMX do it because they get sexual pleasure from their breasts, so they want one that still has feeling. It does cut your risk of contralateral breast cancer, but your risk is supposedly not any higher than baseline, which I think is ~6% over your life.
Edit: half the sugery = half the risk of complications. Just something to keep in mind.
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Has anyone been given a generic form of Herceptin? I was last Tuesday and have had a bad week. The neuropathy in my hands and feet is much worse, I have felt bad - aching all over and just felt off. I did really well with previous treatments of HP.
Also, I have a lot of shoulder pain in the shoulder opposite the side I had breast cancer. I had a clear mammogram last Wednesday. The pain has occurred for more than two weeks. Should I worry and say something to the MO or am I just being paranoid? At 61, having lost a lot of muscle tone from being so sick during chemo, I should expect aches and pains, right? Do you ever get pass worrying about things?
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Hi Jkeet,
I’m 46 & chose to only have a single mastectomy. My genetic testing was negative & I only had issues in the right breast so I opted for surgery only on the right side. My breast surgeon & plastic surgeon never made any mention of doing bilateral mastectomy & I wasn’t interested anyway. I chose to have the DIEP reconstruction since I was a candidate for that & ive been really pleased with my recovery so far. My right breast moves & feels like a natural breast, except there’s a lot of numbness.
Angie
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Hi Angie, how do they decide between lumpectomy and mastectomy? I’m not a candidate for DIEPflap. Thanks, julia
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Jkeet—If lumpectomy is an option the decision is yours.
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Jkeet,
I chose a lumpectomy because after chemo, an MRI and PET scan revealed that I had no active cancer left in my breast. If I still had a 5 cm lump, I probably would have opted for mastectomy.
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jkeet,
I chose a lumpectomy after neoadjuvent chemo and mri said all was clear. Did not get clean margins and cancer was still present, so mri was wrong. I then had a double mastectomy because I did not trust any of the tests. They found dcis in my good breast that was never detected on the mri and obviously wasn't touched either by the chemo.i had diep flap recon at the same time and they are identical and look great. No other surgeries needed. I did not need any radiation because nodes were all clear.
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I had my 1st dose of Kadcyla Friday. Last night my right leg hurt so much I couldn't sleep. Has anyone on Kadcyla had bone pain? I plan on taking Claritin next time.
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hi Dawn- sorry you have bone pain- you had no bone pain on herceptin. I am 7 weeks post chemo and only having herceptin. Besides some low leg numbness I have occasional bony pain in my fingers and foot. I do not know if it’s just chemo lingering se or herceptin is contributing also. I hope it gets better for all of us. Are you found rads finally? I will be eventually on hormone pills but I do not know when and what type. I will see my Mo in 4-5 weeks and I do not know if I It is wise to wait this long before having pills. When’s you are starting the pills ?
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Hi Margun, I see MO 9/25. He told me I'll be going on Letrozole but haven't started yet. I'm going to do the rads as MO recommended. I'm guessing it will start early Oct. I have a CT with the radiation oncologist scheduled for the 30th.
I've never experienced bone pain with Herceptin so I'm guessing it's the chemo it's mixed with.
How are you feeling? What's next for you?
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iDawn ihave some lingering neuropathy but also occasional foot and finger bone pain despite I am 7 weeks post chemo. It is not as bothering as worrying this bone pain short episodes. I do not know if others had experienced it as well.
The next is herceptin and hormonal pills but I do not know when. I have appointment in 4.5weeks with my mo. She letrozol for you they are better tolerated than tamoxifen? I read a lot of se from tamoxifen so I hope letrozole is better
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Hi Julia,
Sorry for the delay in getting back to you.
I was originally planning for a lumpectomy when I was first diagnosed with a 2.3 cm IDC in my right breast. Then, when I had the MRI, it showed I had a 6 mm DCIS deeper in the breast—far away from the first area. Since these 2 cancers were so far apart, having a lumpectomy of these 2 areas would leave my right breast looking significantly deformed. My breast surgeon explained that by taking the 2 cancers & taking an area of healthy tissue around it to make sure the margins were clear would take away a lot of my breast (I’m a B cup). So lumpectomy was off the table. With my mastectomy I had to remove the areola & nipple as well because the DCIS was only 1 cm away from them. My PS wanted it to be at least 2 cm.
I believe that the surgeon looks at the size of the lump, the size of your breast, are there more than 1 lump to determine what your options are.
Angie
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My experience was similar to Angie’s. I originally was thinking lumpectomy even though I had two areas (approx 1 cm and 2 cm) IDC but in the same quadrant of my right breast. When I had an mri they also found DCIS at the top of the same quadrant. While my BS said she would initially do a lumpectomy, although she felt a MX would be a better option since the tumors were on opposite sides of the quadrant, after my mri results she strongly suggested MX because 3 instances was to many for her to justify a lumpectomy. My PS agreed.
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Hi Hapa, hi LTWJ,
I hope you are doing well . From some videos online staring different onclologists ,Nerylinx seems to add some very small benefit as ive read , yet not sure if its worth the side effects but anyhow each one of us has a unique experience and tolerance to pills. Tell us how its going so far. as for me i did not achieve a pCR because obviously i am her2+ HR+(90%) and this subtype has the least chance along with the triple neg to achieve a pCR. I had partial response my tumour went from 2.1 cm to 0.8cm . My KI 67 has gone from 80% to 10%. this is why i think my onc didnt want to put me on kadcyla, because i wouldnt repond to it (ki is 10%)
My onc has suggested to stay on Herceptin (1/12 done) alone for the remainder of the year along with radiation therapy (7/25) and Aromasin for hormonal therapy after radiation.
I asked him about my risk of recurrence for 10 years ... he said "you have between 10-12% risk of recurrence /10 years" but when you look at websites such as Genentech they say despite all treatments including herceptin chemo and what not the chance of having cancer coming back is 25% meaning 1/4 people have their cancer come back..... scary! (they didn't even say every case is different...)
LTWJ why did u have a hysterectomy? Yeah not a lot of people had Taxotere wonder why. from what i've heard its stronger than Taxol ...
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Oh , and i forgot to add something! i am HER2+. HR+ (90%) PR+ (10%) wondering if this qualifies as a triple positive? when i asked my onc he said "mmmmmm borderline maybe." what do you think?
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Hi,
Is there a blood work done every time before herceptin infusion unlike tchp? do you also see your MO for pre chemo? the herceptin infusions are for 12 weeks? how tolerable are the SE compared to TCHP? I just finished my last TCHP today and kinda happy that big chemo is over at the same time want to mentally prepare myself for the next chapter of treatment.
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Hi. I received bloodwork but did not have to wait for it prior to Herceptin infusion. Herceptin only was not as bad as TCHP. I had some fatigue and flu like symptoms but hair started growing and taste buds returned. You are getting closer to the finish line!Best of luck.
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rajae - I also didn't have PCR which is why my MO offered Nerlynx. I saw no reason to not try it, worst case scenario if I had bad SEs and couldn't tolerate it I would just stop. I have been taking it with little issue. The data from the Nerlynx trial wasn't the best -- not only was the benefit small, but there were all kinds of statistical issues with the way the trial was stopped and then picked back up years later. Further data analysis showed that HR+ women got significant benefit, and bear in mind that most of the women on the study did not have neoadjuvant chemo so there was no telling if they would have had a PCR from chemo alone; with PCR the odds of recurrence are so low that any extra therapy is unlikely to get it any lower. As I did not have a PCR, there is obviously room to reduce my odds of recurrence lower, and even though I'm not thrilled with the quality of the Nerlynx data, we can only make decisions on the data we have and the data we have says it will probably help. In my mind, if it might help and it seems like it's not hurting, and my insurance is covering it, so I see no compelling reason to not finish it. Your KI67 dropping is a pretty good sign. I didn't get a KI 67 test, but my tumor did drop from grade 3 to grade 1 after chemo, and my tumor was no longer testing Her2+. I do wonder sometimes why I'm bothering with any further Her2 treatment, but according to my MO the Her2 is the aggressive stuff.
I don't understand where your MO got the idea you wouldn't respond to Kadcyla. I know of no data linking response to KI67.
Also, the Genentech website would have been talking about all women who got Herceptin, every case is different. If you had a bigger tumor, or were lymph node positive, or were HR-, or your tumor grew on chemo, etc., your odds would be worse. If you had PCR your odds would be better. I think their 25% number is out of date.
You can check out the Starting Nerlynx in May, 2019 thread for more discussion of Nerlynx.
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I did not have bloodwork before Herceptin only like before chemo, and only met with my MO every other time, so every six weeks. You typically have a year total of Herceptin.
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My experience was similar to Ingerp, no bloodwork before my herceptin and Perjeta infusions but when I saw my OC I would get blood work prior to my app. I saw him every three months.
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-HAPA,
Thank you for the clarification. You're right saying everything that probably would help should be thrown at us HER2+ . yeah not sure why my MO said no Kadcyla... He just said not necessary . from what i know, if you have a low KI67 you automatically dont respond to chemo, that is why KI 10% or lower they just put you in for surgery hormones and radiation. Your case about HER2 become negative actually happens, iim sure ive read somehwere long ago that t her2+ can mutate to her2- and vice versa at any time . as for continuing treatment for her2+ while you're now her2- ... not sure why aswell maybe they just have to follow the standard guidelines
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I've just had my last Herceptin injection, phew. What a year!
I will keep coming in for the Zoladex shots and of course the checkups. Next bloodwork and MO apointment with the second Zoladex from now, that means in 7 weeks. 7 weeks with only 1 short nurse apointment, I feel free today. Such a long time ahead with no medical appointment!
I feel like celebrating somehow 😀 Don't know how, yet
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Hooray JaBoo!!!!! It is a *great* feeling, isn't it? I took myself away for the weekend immediately after my last H, and took a longer vacation a week later with my family. Please do something nice for yourself.
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I have a question. I had labs done last week before my Kadcyla infusion. The results are in the portal and I noticed I was checked for Estradial for the first time. The result was <5. My original biopsy had my ER 100% so I'm guessing this is good?
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Good Morning Everyone,
Tomorrow my cousin will have her first chemo and herceptin treatment. She is 30, diagnosed about three weeks ago. She is scheduled to receive:
Perjeta
Herceptin
TaxotereShe has been in the hospital for the last couple of days - to receive a port and catheter in her lungs (she had a build up of fluid), so she is already a little beat up (although, she is in very good physical shape - very fit and muscular (she participates in extreme sports)).
What can we expect tomorrow and for the next couple of days? Nausea, diarrhea? When does it start? What did you take to help with symptoms and side effects? How long did side effects last? When will hair loss begin? What can we do to help her, make this easier for her?
Thank you and G-d bless,
Jen
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j414--I can't answer all of your questions but can share my experience. I never had any nausea, although I took the anti-nausea meds for a day or two following every treatment just as a precaution (I had them, so why not?) (I also think they helped me sleep--the steroid pre-med can make that tough). I also never had any diarrhea, although I hear Perjeta can be rough that way. *If it were me*, I'd take some Imodium for a day or two. Others who have had Perjeta will weigh in. I think by about the third chemo, I was losing my hair quickly enough that I cut my hair down to about an inch, and buzzed it very short about a week after that.
I'll tell you what I've posted often--I *really* pushed protein through chemo, and I'm sure that helped to minimize my SEs. My blood counts stayed good throughout, and my MO told me I was the only patient she'd seen who was actually making blood through chemo. I ate red meat 5-6 times a week, ate an egg every day, and had a protein shake every day.
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Congrats Jaboo, so happy for you.
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