TRIPLE POSITIVE GROUP
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I got my MRI results back today. My tumour is now 2.6 cms, it was 1.7 cms Oct 1st and 2.2 cms Nov 4. There was one node that looked slightly but not alarmingly irregular. Whatever that means. I'm having the node biopsied and if it is positive, I'm having neoadjuvant chemo and if it is negative, I'm having surgery on the 15th. Oh and there is cancer in my nipple so bye bye nipple. I just really want to get treatment started. Either way, in about a week my treatment will start.
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Redcanoe - can relate to you. Yeah my tumor grew from test to test. Hope your nodes ar clear.. but wouldn't you still get chemo? Definitely it feels better when treatment starts!
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No, the first two were ultrasounds.
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Thanks for all who had suggestions for my vertigo. The brain scan revealed a chronic middle ear infection (mastoiditis) on the left side and some other white matter findings consistent with MS. I don't know what to think of the MS finding, except that all the symptoms that I had from chemo are similar to MS but have mostly resolved except for what I thought was just long term chemo brain (some confusion, forgetting words, foggy etc).
Thinking and praying for all of you still fighting the Triple Positive fight
Peace,
Noelle
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noelle - glad you have some answers, but hoping the findings consistent with MS are not a player. It is important to remember that radiologists will often state all scenarios, including worst case, because it is their job to provide the impetus for further investigation.
For those who had differing measurements on differing imaging modalities, remember this is common and not necessarily reflective of growth - not saying it is not - but may be reflective of more sensitive imaging and a more accurate measurement of size. MRI is generally considered to be more accurate than either US or mammogram.
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noelle -- glad you found out what was causing the vertigo! Hope you don't have MS, but if you do, MS can be very slow developing. My SIL was diagnosed with MS over 25 years ago, and she's just developed more severe symptoms recently. "Consistent with" is pretty murky, though.
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The lymph node biopsy came back negative! I'm having surgery on Tuesday and starting chemo AS SOON as I am recovered from surgery. My surgeon is very optimistic that between the MRI, ultrasounds and this biopsy that I am unlikely to need an axillary node dissection and will only have a sentinel node biopsy. I feel relieved today for the first time since this all started.
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Redcanoe that is good news! I only had one node removed and I still had mild lymphodema issues a few years later. Best of luck with your surgery and hoping for a speedy recovery.
Noelle
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Great news, RedCanoe!
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hi again
My beautiful mother - newly diagnosed with MBC to her pelvis in October (bone met to pelvis) was today told she has some lyric lesions to her skull fault . Her her 2 status has also changed - and she is now er /pr+ and her2+ (2018 was equivocal then decided to be negative - and treated as such at the time ) now here we are.
I'm crushed - she will be facing chemo(taxol) now with herceptin and perjeta.
If any skull met sisters could reach out that would men so much to me and my worried siblings -
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CandM - I don't believe I have seen anyone with skull mets post on this thread, but I did a "skull mets" word search on the site through the search function and here are the results:
I did see a few member names that currently post so you could look at their posts or send a private message to them. Wishing you the best - I have walked in your shoes and I know it is hard. Hang in there.
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Hi CandM!
I'm sorry to hear about your Mom. I also did Taxol + Herceptin + Perjeta. It did give me diarrhea (which I managed with Imodium), but it was doable. The worst thing for me is that it changed the taste of food and it was hard to eat many of my favorite foods. ((Hugs))
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Hi, all, checking in for some group wisdom. I had a lumpectomy and SNB last week—nothing remained in nodes and a 3mm area of DCIS was all that remained at the original tumor site. My MO said this is usually considered a pCR, but that because of my age (37) she wants to check with a research colleague to see if this still constitutes a pCR or whether we should consider Kadcyla because I’m younger and should be treated aggressively. Does this jibe with what others have heard? How greatly increased is my risk of recurrence because of my age?
Also, she started talking about tamoxifen and I interrupted because her PA had told me I should do suppression and an AI. She said that is what she’d prefer, but that she’s not sure how much of a benefit there is in doing that for triple positive. I told her my thought was that I’d try suppression and AIs and if they are intolerable then thank goodness there’s tamoxifen and she agreed.
She also said she would like me to do a year of neratinib (Nerlynx), though she said that the benefit of it has mostly been shown in studies of people who only used Herceptin, not the HP combo that’s standard now. She just clearly wants to be sure we do all we can.
Does all this sound reasonable? I’m really worried about the AIs and suppression, but it sounds like tamoxifen isn’t a ton of fun either, so I might as well try to get the benefit of the harsher treatment for as long as I can stand it.
For what it’s worth, the original tumor was 90+% ER+ and 60% PR+.
Thanks in advance for your wisdom.
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Hi Anna!
My tumor went from 15mm to 2mm after TCHP. Between my last TCHP I had three Herceptin treatments. I was switched to Kadcyla and started taking Tamoxifen the same day. Neither have been bad at all.
I wish you luck in finalizing the next phase of your treatment. I agree that the more you can throw on it the better
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Hi AnnaTheBrave!
I've been doing AI + ovulation suppression for over 5 years. (I was 46 when diagnosed and still premenopausal.) Here are some side effects that I experienced:
* Changes in my hormonal balance have always made me moody; AI + OS was the same. My MO prescribed a low dose of Celexa and I've been fine, emotionally.
*AI + OS gave me full-blown osteoporosis; MO prescribed Prolia, and my bone density has improved.
* AI + OS gave me hot flashes, especially in the evening. However, the longer I've been on this regimen, the fewer hot flashes I've endured. Also, it helps to sleep with a ceiling fan on.
My cancer was 95% ER/95% PR.
Good luck!
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i don't know if there's any study that shows Nerlynx after HP my understanding is that it was tested after Herceptin. However, to my knowledge Herceptin is the heavy hitter in the HP protocol. Similarly Kadcyla was studied against Herceptin not Herceptin and Perjeta but, I don't think Perjeta adds a huge amount of benefit compared to Herceptin (if that makes sense).
I'm on Tamoxifen until I'm done with Kadcyla. I don't know if my MO plans to go to AI or Tamoxifen for a couple of years before AI. I've heard different things, AI+Supression is slightly better but, comes with me SEs. I'll tackle that in the spring, no point in getting ahead of myself. I tolerate Tamoxifen well, I don't know how I will handle AIs.
I've already told my MO I want Nerlynx after Kadcyla and, that does seem to be the new standard of care for Triple+ patients. I see a lot of ladies (in my Facebook groups) going to Nerlynx after Kadcyla or Herceptin.
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Anna - there's a lot of controversy over how effective Nerlynx really is, especially considering the negative side effects that most women suffer while on it. That being said, I took it for a year and had very mild side effects. I would take it again. I suggest you go ahead and try it and see how you do. If it's negatively affecting your quality of life, you can always stop taking it. Even women who really struggled with side effects have returned to normal after stopping. We had this whole thread on it, which people still occasionally post on:
https://community.breastcancer.org/forum/80/topics/870980?page=1
I'm also doing OS + AI in lieu of tamoxifen. I had full blown osteoporosis at my baseline DEXA but my MO said my fracture risk was low enough to not take any biphosphonates for it so I decided to treat it by taking/eating more calcium and doing resistance training. My one year scan showed significant improvement in bone mineral density even though I did very little actual intervention. Go figure. I have no insight on your PCR question, unfortunately.
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Hi,
Since we are mentioning Perjeta vs Herceptin I just wanted to post the 6y results of the effect of adding Perjeta to Herceptin, which were published earlier this year. For those of us hormone positive with positive nodes, the effect is very significant, we are talking about 30% reduction in your remaining risk. Very, very encouraging.
LaughingGulll
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And since the 8-years result of the Extenet trial for Nerlynx (Neratinib) were just presented last week in San Antonio, I am going to post that here, too. The trial compared Neratinib vs placebo, and the graph below shows the comparison of survival in the subgroup of HR+, HER2+ patients with residual disease (i.e. no PCR) after neoadjuvant therapy that included Herceptin (but not Perjeta) and who started Neratinib less than 1y after finishing Herceptin, in the graph below "HR+/<1 year no PCR". Also very significant -the caveat being that the study had not been powered for this type of subgroup analysis, i.e. there is no guarantee that the two subgroups were equivalent/comparable.
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AnnaTheBrave, if I was in your feet I would get the supression + AI, plus Kadcyla plus Nerlynx. Everything and the kitchen sink.
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Thanks for posting! I saw the Neratinib stuff you posted in that thread.
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hapa, good to see you. Congrats on improving your bone mineral density! Would you share your calcium intake and resistance training plan?
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Morrigan, you are welcome. The effect of Nerlynx for that subgroup is big. The trial didn't compare Nerlynx against Herceptin+Perjeta, but Perjeta and Nerlynx work in very different ways. I am glad to see that the results at 8y confirm that the protective effect against recurrence and death of Neratinib was real -there is no way this was a fluke. Today, they offer Nerlynx to anyone with residual disease, but only two years ago I had to fight so hard to get it -I had to change oncologist and hospital.
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Morrigan -- I am not going to pull out my copy of the study right now*, but I recall somewhere around 30% of the patients in the KATHERINE trial (Kadcyla) had gotten perjata.
* crazy day at work and extra tired after #13 of kadcyla (or as my DH calls it, "Cad-zilla", which is feeling more appropriate!)
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"Morrigan -- I am not going to pull out my copy of the study right now*, but I recall somewhere around 30% of the patients in the KATHERINE trial (Kadcyla) had gotten Perjata."
That is interesting so it would seem that Kadcyla improves upon Herceptin and Herceptin/Perjeta.
"Today, they offer Nerlynx to anyone with residual disease, but only two years ago I had to fight so hard to get it -I had to change oncologist and hospital"
I do see a lot more women getting it, especially in my Triple+ Facebook Group. When I asked about it in February the Doctors about it they weren't enthusiastic. I'm going to bring it back up in the Spring when I get closer to the end of Kadcyla because I really want it.
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I am nearing the end of Kadcyla, and yesterday I sent my MO a message to warn her that I would be asking about Neratinib
I am pretty sure she won't try to talk me out of it, even though it hasn't been studied in us Kadcyla folks.Morrigan -- you must be past the halfway point, right?
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@YeslamaDragon - Yes, I am going for #9 next week. I'm not having major SEs with Kadcyla but, I'm still counting down to my end date in the Spring. Fingers crossed that my Echo holds and I won't need a break after my next Echo (February).
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LaughingGull - thank you for sharing the results of the neratinib study. I asked my oncologist about this,and she said she was attending the conference in San Antonio and we would discuss it for me after she saw the results of the study. I'm triple positive with residual and currently have done 4 of 14 kadcyla. I think I'll push hard for the neratinib, even though I can't stand the idea of another year of treatment. Those look like significant results.
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Laughing Gull- thanks so much for sharing that info! I have 2 HP infusions left and was leaning towards not pushing my MO about neratinib (he hasn’t brought it up at all), but now I think I’m going to push hard for it. At worst, I take it and have to drop it...but I’m willing to throw anything at this beast to keep it away!
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