TRIPLE POSITIVE GROUP

SpecialK

msmurphy - sorry to hear about your hand issues. Couple of thoughts - there is such an animal as late-onset CIPN (chemo induced peripheral neuropathy) so it seems premature or dismissive of your MO to say it couldn't be caused by that. Secondly, you mention tamoxifen and not having started it yet. Are you premenopausal? Did chemo put you into chemopause? The potential reduced estrogen may be causing at least the trigger fingers. This happened to me on aromatase inhibitors, but joint pain and triggers can both be attrributed to reduced estrogen so I am wondering if that might be at least partially involved if chemo messed with your cycle. Has there been any mention of using any nerve conduction meds like Neurontin or Lyrica to help? I'm sure more meds are the last thing you want, but it sounds like you are uncomfortable. I had triggers in multiple fingers, my right thumb, and left ankle but it was definitely caused by letrozole. I switched to arimidex and immobolized the fingers/thumb with training tape (like the Coban wrap they use when you have a blood draw) and that helped. I later switched back to letrozole but took a brand with less fillers and additives and had no further problems.

momwriter

Hi Everyone,

I'm coming up on 9 years past DX. In general, I'm feeling great and grateful and still deeply nervous with each mammogram or MRI. . I have been on Tamoxifen for 8 years. I thought my MO wanted longer, but the nurse practitioner recently said that my treatment plan said 7 years and that I'm in a gray area as to how long to take it.

Since I've been taking tamoxifen since I was doing radiation, and right after chemo ended, and I've since become menopausal, (I was premenopausal at 47 at dx and never had a period since), it's hard to know which of my symptoms are due to tamoxifen. I can manage most by taking ginger and magnesium (constipation and leg cramps); I've gone mostly gluten free (some type of eczema when I have too much gluten or sugar/alcohol); I do yoga and exercise which keeps my joints feeling fine to do more vigorous exercise. I drink lemon water because I feel the tamoxifen makes me more acidic. Lately I felt a prickling in my feet which I had never felt- and I"ve started taking Vitamin B and that seems to help. Most of these things I can live with and just have become part of my routine so I don't consciously think about them in my life (Just have a shelf of supplements).

But I'm worried about long term affects of Tamoxifen on my body as these effects accumulate. At the same time, literally the LAST thing I want is recurrence. I don't really want to take an A! unless I really have to.

So I've decided with the MO's consent to take a 6 week break until my next appointment and we will discuss.

I cannot find any good recent research about a protocol for triple positive and hormonal therapy.. I know that by stopping I am stopping a treatment that may be keeping the cancer at bay. But I also know I've been on it a long time. I'm wondering if there's research about effectiveness with triple positive and recommended length of time, and taking breaks, like, for year. Could you do every other year?

I'm so excited to be off of tamoxifen, In the past, I've missed a couple of days in a row but not enough to make a difference. But I'm also kind of terrified. I'd appreciate hearing what others' MO's have to say about this and what people who have been treated more recently have learned about this.

Thank you.

Anonymous

OG here!

Boogirl-the Metformin study is 1650 mg, I think. My PCP prescribed 2000 and I take 1500. I just cut a pill in half. I have a lot of extra Metformin lol.

Redcanoe-My BFF, a nurse practitioner for my PCP, saved my life. She forced me to see a breast specialist and went with me, after the general surgeon who did my biopsy said to just take and AI. Turns out the breast specialist did another two biopsies to find the cancer and that it was triple positive. In the meantime, I couldn't sleep, couldn't eat, cried continuously, heart was pounding, etc. I saw her for a sinus infection, and she said I had tachicardia, and that I had sent myself into a panic disorder. Prescribed Cymbalta as it would also help with potential joint pain from the treatment. My dose was a low dose but within 48 hours, I was a new person.

I weaned off of it during chemo when I was thrown into menopause. Took tamoxifen and had hot flashes so dramatic during the day that when I felt one coming on, I would literally get anxiety as I would be drenched. Onc put me on effexor which helped some. Then weaned off that. After three years, I had an endometrial issue and my OB/GYN called the oncologist while I was sitting in the room and they immediately took me off tamoxifen and moved me over to arimidex. Hot flashes were bad but not as bad. But joint pain was terrible. So oncologist put me back on Cymbalta low dose. Immediately better.

I have been on Arimidex, not the generic, for about 7 years, with one short break. I think I will just stay on Cymbalta forever lol. I figure between the joint pain help, and the anti anxiety part, I'm just better off.

My current onc is ok if I quit Arimidex, but wants me to stop Premarin if I stop Arimidex. I weighing my options. It makes me nervous to stop even though it has been a total of ten years on some version of an AI.

MsMurphy-I went to an ortho for issues with my thumb. The guy I saw turned out to be someone whose mom had BC. He said I had deQuervain's synovitis and he said it was due to Arimidex, as his mom had the same and he had done extensive research. I got a cortisone shot which helped immensely. I still have an impossible time opening jars. At some point I might have to consider surgery but am trying to avoid it.

My big issue now is kidney stones. I had one that was stable forever and during chemo part of it broke loose. Oh my...the pain. Had lithotripsy. All good. Last year, July, woke up with extensive pain. Went to ER...kidney stone in ureter...had a stent for ten days...AWFUL...then they went in and removed it. All good. Literally less than one year later, a month ago, same thing, other side. ER again, only this time, I'm stuck in what I call a hallway room. Literally in a hallway with a curtain on either side of me. Very little attention. They put the stent in at the end of the day and say they are keeping me overnight...in an ER room with no window or bathroom ar, not a normal room as they are supposedly full and diverting people. I was ok since it was just overnight. Next day, my white cell count has jumped, so the internal med person won't send me home (even though there was no fever). Now I am annoyed as I am stuck in this crummy room, going to a shared bathroom and no shower. (I did find out they had one but not my own). I told them I would comply one more day, but if by the third day things weren't better, they needed to locate a room or I was checking myself out. Nurses couldn't believe the doc didn't send me home because it was not that far over the norm and they said it was just the procedure. Sure enough, it dropped by the following day, not to normal but enough they weren't that concerned. Told me to get bloodwork a couple days after to make sure and by then it was well below. One week later, They went to retrieve it, and instead of dropping down, it went back into my kidney, lol. Doc had to do a bunch of extra work to get it out, but all good now.

I am trying to drown myself with water, but I hate it lol.

LAGO!!!! So good to see you checking in.

Coach Vicky-so sorry to hear about your husband, but you are doing exactly what I would do. Hit up all my docs for advice. He is in good hands!

To everyone else...I am NOT the poster child for living beyond breast cancer. I am sure that is no surprise after reading this. Every pain and I think it is back. I would like a PET scan ever couple years if they would do it, lol. Rationally I know that I could drop tomorrow from a heart attack or something, but I still can't get past worrying about a recurrence rolls me to stage IV. However, it does get better. There are days when I don't even think about it. On the good side, I have learned to be my own advocate and not to accept some pat answer. Sometimes you have to fight back. And the troublemakers typically get some action and answers.

I have also learned that oncologists can get any test they want approved. My current ONC goes through my charts and the reports from my PCP. When I mentioned I had a polyp on my gallbladder that the gastroenterologist said we could just monitor for a couple years because it was small, she rolled her eyes and said we are doing another ultrasound. I haven't convinced her to order a PET scan yet, lol, but she does all the cancer marker tests I want to give me comfort. At least for a day.

So...here I am ten years later, depending on what date you pick. Diagnosis...ten years. The third biopsy that finally identified the cancer, removed and had clean margins, was January 2011, so that is what I consider my date. So I have another 6 months.

Keep the faith!

Anonymous

And sorry about the book I just wrote above!

Redcanoe

Thank goodness for your BFF fluffqueen. It sounds like it's been quite the rodeo with endocrine therapy.

ElaineTherese

fluffqueen,

I'm on my sixth year of Aromasin, and have been taking Celexa to deal with some of the side-effects. I think I'll stay on Celexa forever, too!

MsMurphy

Thank you everyone for weighing in on my hand issues and asking some great follow up questions. The reason my oncologist ruled out neuropathy seemed to be based on 2 things. The first is that despite the numbness and tingling, I haven't lost any sensitivity. The other is that it is that if I change positions, it will stop or lessen. He said neuropathy would be continuous. I do believe it is some after effect from the taxol, especially now that my hips and ankles are also bothering me. I am going to keep pushing it when I see him at my next infusion. Short term, I read that B6 can sometimes help so I've been taking it and the pain seems to have lessened although the tingling and trigger fingers have gotten worse. Looking into adding some B12 as well. Really hoping my PCP will be more helpful on it and just need to hang in until the 18th.

Oh, and to answer your questions SpecialK, I was taking my birth control continuously to stop periods due to endometriosis prior to my BC diagnosis and then quit right before chemo started. I haven't head a period in over 10 years so I'm really not sure of my menopause status but since I haven't had any peri or menopause symptoms it is hard to say if it is estrogen related.

SpecialK

msmurphy - try the tape on your fingers - I wore it all day and night and could still function since it is stretchy. I have also heard that splinting with a soft brace can help with the wrist/hands - an OTC type from the drug store or Amazon.

fluff - hey girl! Sorry to hear about the kidney stones, that sucks, but good to "see" you!

Nsbrown54

I was just reviewing my survivorship plan that my oncologist provided to me (planning documents) and saw that they have my Kajinti treatment ending in August 2021 rather than January 2022. That would mean 11 treatments rather than 18. Is that a normal treatment plan for IDC stage 2? FWIW, I did 6 rounds of TCHP, had SMX and there was no residual cancer found. No cancer was in my lymph nodes, so no radiation. I plan to discuss with my oncologist when I see her during my next appointment and do some google searches, but curious about others experiences. Thanks

morrigan_2575

Hmm, it should be 18 including the 6 given while doing TCHP. Supposed to be a year of Herceptin.

marinochka

Hello, ladies

I want to ask, it is regarding my young friend(in comparison with me), she is 43 years old. She has stage 2B and going thru chemo now, before surgery. She has 2 places in the same breast which are ER+/PR+, HER2+.

Originally was recommended to have double mastectomy(another breast-preventive)

But another surgeon is suggesting to have at this point 2 lumpectomies, less aggressive approach.

I know it depends on also how person feels. I am, for example, would be more scared of recurrence than anything else.

But i am not her, it is my approach.

I know it is personal decision, but would appreciate any opinions, thoughts.

thank you so much in advance for any word.

ElaineTherese

It's up to your friend, really. I was 46 and had a big lump (5 cm.+), plus one compromised node. After chemo, my active cancer was gone, according to an MRI and a PET scan. So, I felt comfortable with just a lumpectomy. I also didn't want to do reconstruction at that time.

For some women, two lumpectomies on the same breast might not produce the ideal cosmetic result. My breasts are C-cups, so when I had my lumpectomy, it didn't really make the right breast much smaller. If your friend is A-cup or B-cup, two lumpectomies will have a much more significant impact.

The survival rate for lumpectomy and mastectomy is the same.

marinochka

thank you ElaineTherese for your reply. Interesting points ...I will let my friend know.

Pethead57

Hello,

so I've recently been diagnosed with HER2+, HR+ „triple positive“ breast cancer (G3), no lymph nodes affected, no metastases - guess that makes me new member of our little club!

My doctors suggested neoadjuvant chemotherapy (Four triweekly sessions of what in Germany is called Epirubicin+Cyclophosphamide; followed by 12 weekly sessions of Paclitaxel, Trastuzumab and Pertzumab).

I had my second of the first four chemo sessions six days ago, and today was the first ultrasound checkup. The doctor unfortunately did not see a change in the tumor's size, but said that at least it seems as though holes are starting to appear on it (which to me sounded like something she'd say so that the patients who don't show the desired outcomedon't freak out 🙈).

I know it's hard to generalize these things, but since my doctor was obviously expecting more (she scheduled the next ultrasound in three weeks time instead of six weeks as originally planned!), I was just wondering how soon after your neoadjuvant chemo began your doctors started noticing a change in size. It would be if some of you could share their experiences on this thread. Thank you!

ElaineTherese

Hi Pethead57!

I did the same regimen as you're doing, but I didn't do ultrasound check-ups during chemo. I had an MRI and PET scan before chemo, and an MRI and PET scan after chemo. The last two scans showed that all of my active cancer was gone. During chemo, we could see that something was happening to my cancer because it was close to my skin, and my oncologist would use a ruler (yes, a ruler) to measure what was visible.

Do not be discouraged by your first ultrasound check-up -- as your doctor implied, cancer doesn't necessarily shrink, but loses its mass as though it were swiss cheese. Also, the active cancer may be gone, but a scan may still show the tumor bed, suggesting that nothing changed. Only the pathology after surgery can say -- for sure -- what chemo did to your tumor. ((Hugs))

Donaji306861

Hi

For a lot of reasons I won't go into I've been seeing different doctors in different countries.

I had a lumpectomy a few weeks ago. One margin was not clear. I started herceptin but am now being encouraged to have a re excision which I want to do.

Is there any reason I cant have surgery while on herceptin? I have huge communcation problems with both surgeon and medical oncologist. And no, I can't go elsewhere.

I am supposed to have herceptin this week and surgery next. Is this normal?

SpecialK

donaji - you can definitely have surgery while on Herceptin only as long as your blood counts are ok - I had several surgeries while on it, no problem. Most Her2+ patients who have either multi step reconstructiono or surgery afterneoadjuvent chemo undergo surgery while on Herceptin.

1946Taco

Donaji - hang in there and feel free to bring your questions here. Several people on this thread have done lots of research and all of us have experiences to share.

Redcanoe

when do you guys start hormone therapy? I'm finishing radiation tomorrow and I haven't heard from my medical oncologist at all. I have thought this whole time that hormone therapy starts right after radiation but my mom said maybe it's after herceptin? I feel like you can do both at the same time? I'm also waiting to hear what is recommended. Just tamoxifen? Tamoxifen and ovarian suppression?

I will call soon but just figured I would hear from him around now.

morrigan_2575

i started mine while on Kadcyla and Radiation. I think each doctor does it different. Some don't like to overlap too many treatments

ElaineTherese

It might vary by oncologist. I started OS + AI after I'd recovered from surgery and before I began radiation. I took it through radiation, and yep, six years later, I'm still doing it. As of now, I'm on the seven year plan.

Donaji306861

Thanks. That's very helpful. Information makes me stronger!

So fortunate I have found this great supportive community!

momwriter

How long are most triple positive people here on hormonal therapy? I've been on tamoxifen for 8 years. But the NP told me that 7 years was in my treatment plan. So I'm taking a break for a month and then will see my MO to decide whether or not to stop permanently. (I would like to, but I'm afraid). I'd love to hear what other MO's are recommending as there doesn't seem to be much research about triple positives and hormonal therapy duration.

LaughingGull

Hi redcanoe, I started hormone therapy a couple of weeks after radiation, my MO wanted to wait a month or so, but I preferred to start asap.

momwriter, I got my ovaries removed and I am therefore taking an aromatase inhibitor instead of Tamo. They told me probably 10 years; I am 3 years into it and have a new MO, I expect she will review this recco once I hit 5 years but I am not there yet. We seem to have a similar diagnosis. Are you pre-menopausal? I was told by a couple oncos that for me, an aggressive approach to hit the hormonal component of the cancer made sense, and they supported the ooph + AI plan (but I had additional reasons to want the ooph, beyond breast cancer).

Congrats on having made it to almost 9 years post-surgery

ElaineTherese

My MO has me on a seven year plan unless new research comes out showing that some other length of time is more efficacious. I was originally on the ten year plan, but a study (I forget which one) showed that there was no additional benefit after seven years. I am a little nervous about stopping, but my oncologist says that my cancer was more driven by the overexpression of the HER2 protein than by estrogen. Another option she has proposed is having my ovaries removed. Of course, my body will continue to make some estrogen, but it would be less than if I left my ovaries in.

SpecialK

My MO used the BCI (Breast Cancer Index) test at the five year point on anti-hormonals to try to help determine if I should continue. This test required a sample of my original tumor to be sent to Biotheranostics for genomic testing. The test has both a predictive and prognostic result in that it tells you how well the drug is working on your specific tumor material, and how high your risk of recurrence is going forward. So the combinations of result could be low/low, high/high, high/low meaning high benefit, low risk, or low/high, meaning low benefit and high risk. I fell into that last category which represents about 10% of those who test and have a low benefit from the medication, but a high recurrence risk. For that reason my MO wanted me to continue letrozole beyond five years. At the 7.5 year point I did discontinue because I needed an invasive dental surgery and the maxillofacial surgeon wanted me off all drugs that could impact bone - this included both letrozole and Prolia. If not for this surgery I would have continued most likely to the 10 year point, as I was highly ER+ at 96% in addition to being Her2+, and my side effects were tolerable. I am at 10 years now, having been off anti-hormonals for just over a couple of years, and I also believe that there is some protective benefit from anti-hormonal drugs after stopping - for an unknown period of time. For many TP patients I think the BCI test may not be useful if you have had neoadjuvent treatment as this would impact your tumor material prior to testing. Even though I would have qualified for neoadjuvent treatment based on my tumor size and nodal status, Perjeta was not yet in use and the majority of Her2+ patients had surgery first, chemo adjuvent.

redcanoe - I did not have rads as I had mastectomy and ALND, but my MO advocated a very short break between treatments. I started letrozole several weeks after last chemo and while on Herceptin.

hapa

redcanoe - my MO waited until I was done with rads to put me on anastrozole + zoladex.

1946Taco

I started AI's about 6 weeks after I finished Taxol. Stopped at 3 years but I was over 70 when diagnosed. Two years later, I'm still very comfortable with that choice for me. I think if MO had pushed me to continue, I would have reconsidered but she was sort of "oh. OK." BS said last week was my last expected visit with her.

morrigan_2575

I had neoadjuvant and my MO wants to do the BCI. My insurance rejected the claim because of the HER2+ aspect, apparently they only approve for HR+/HER-

SpecialK

morrigan - when I had the BCI test done my insurance denied the claim as well, claiming the test was “experimental" as it was fairly new then. Biotheranostics had a department that appealed the claim and when it was denied again they did not charge me. I had asked for an Assignment of Benefits form from them, which they faxed me. I signed it and faxed it back and they agreed to accept whatever insurance paid - which ended up only being the cost of taking my tumor out of frozen storage and sending material to them. I suspected at the time that they were in the process of building their database so were pretty flexible about the reimbursement - I don't know if that is still the case. For those who are uninsured they have a patient assistance program, but for insurance denials they didn't penalize the patient.