TRIPLE POSITIVE GROUP
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I still have some eye tearing and blurry vision -- mine got worse on kadcyla, it is getting better slowly now. I saw my eye doctor who had me start doing warm compresses on my eyes followed by lid scrub (available at the pharmacy) and then eye drops without preservatives (the natural tear type) and that is helping a lot, but I keep forgetting to do it!
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"My team keeps saying to take things one stage at a time, which I understand too, but it’s hard to not know what’s coming up"
@JamG - My MO would say the same thing. I did so much research before starting TCHP that on my first week after infusion I was asking my MO about Nerlynx and Kadcyla and he said we'll discuss it when we get there, let's see how TCHP goes. Meanwhile I wanted all my treatment options laid out so I could plan, even if it changed.
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cowgirl - you're sweet, thanks! I too have learned an immense amount on this board - it is such a valuable resource when the learning curve is so steep!
yeslama - have you tried lubricating drops? My understanding is that the tearing is actually a form of dry eye, as counter-intuitive as that sounds when your eyes are watering. I struggled a bit with the lubricating drops during the day because my eyes are naturally sensitive and I felt like the drops affected the clarity of my vision, but using them at night was helpful. I kept them on my nightstand to remind me.
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Hi Coach, just checking in to see how everyone is doing, I’ll be thinking of you and sending supporting vibes and mojo your way. Take care
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SpecialK: yes, I am using the eyedrops as well as the gel at night. But not doing any of it as regularly as I should!
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Hi All,
I just finished my 6 TCHP on Monday! So happy phase 1 is done. I’ve got those tears too, it’s a pain.
Has anyone else had their fingernails turn purple or get purple stripes? Some are leaking fluid. It’s gross. I’m taking antibiotics, just curious what to expect. One looks like it will fall off.Thank you to all the information you have shared here, it’s so helpful
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sail - here is a link to a thread that discusses nail issues from chemo with some helpful info about remedies.
https://community.breastcancer.org/forum/6/topics/880002?page=1#post_5676447
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@SailCA-some of my nails have turned purple, are misshapen, and painful but not leaking fluid (yet?). It makes it hard to type! I just saw that SpecialK posted info on it. Can't wait to read some of the remedies. BTW, congratulations on finishing up with TCHP. I just had my last infusion of it on 6/30, and the whole regimen was really hard for me. I hope it was manageable for you!
@SpecialK-thanks for posting the link to the nail remedies! Heading there now...
And to everyone who posted about the eye drops, thank you. I've started to use them and I think they are working.
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I thought I would post about what I did with my nails during chemo since we are discussing this. None of this is proven or trialed, but it did protect my nails from too much damage. I also realize this is after the fact for those who have completed their chemo portion of treatment, but someone new may come along just starting and read this. I did ice fingernails and toenails during the taxane infusion (Taxotere for me) for every treatment. I painted my finger and toe nails with dark opaque polish for the day of treatment so there would be no light penetration - thought to be a problem with taxane based treatment. The next day I removed that polish and painted on a coat of clear nail hardener - Sally and OPI both make it. I received a little kit at one of my initial appts with the MO from Sanofi Aventis, the manufacturer of Taxotere, that included a bottle of of the OPI brand of clear hardener. I put on a coat each day for the next six days, then removed and started over - so did this three times between TCH infusions. I had no darkening, ridges, or lifting. Full disclosure - I did injure my wedding ring fingernail when I was done with chemo and it did indeed lift. It could never quite re-seat itself so it was removed by the dermatologist about six months later. So even if you are finished be careful! It took another full six months to grow to the end of my finger and I kept the nail bed covered during that time - it looks really weird to have no fingernail!
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i did almost the same, except I never used the dark nail polish. I iced my hands/feet and used sally hassen clear nail polish/hardener and cuticle oil throughout Chemo. My nails didn't turn black or lift but, I did get those white lines.
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morrigan - did you have one white line for each chemo session? They are known as Mees lines if they are horizontal across the nail - usually without a ridge, and associated with chemotherapy, poisoning, or kidney failure.
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Thank you Special K, the info was helpful, I’m soaking my fingers now to hopefully relieve some pressure. In retrospect I would not have chosen to ice as I have Reynauds (fingers turn white) and the cold would have been extremely painful.
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JamG- today’s day 5 and I’d describe TCHP as sucking the life out of me. I did not have nausea and for that I’m thankful. My surgery is next month then depending on the pathology, HP and rads. I hope you are on the upside at this point.
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sail - you are not the only one I have seen who was unable to ice because of Reynaud's. You are done with TCHP, right? You should see improvement in the way you feel but surgery may muddy that water a bit depending on when it is scheduled - I felt immensely better at the six week point. Then had a surgery to re-install the left expander a week later... I would encourage ingesting as much protein as you can muster before and after your surgery - to build your RBC and hemoglobin prior, and aid in healing after.
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Hi Everyone,
Thanks for the input on hormonal therapy. Here's an update recap-.I took a break from tamoxifen in June after 8 years based on the recommendation of my MO's NP. I met with my MO today.
While she said it was my choice whether to take hormonal therapy for another 2 years, it seemed like she thought it a good idea to continue for 2 more years if I tolerate it well since I had a very aggressive pathology.(nasty micropapilllary for some of the tumor, multifocal, lymph nodes etc).At the same time she's still optimistic as recurrence rates are statistically low and showed me recurrence rates graphs.
For now, I will continue my break for the summer, see how I feel without taking anything (establish baseline normal) . Then, I will try taking Exestemane in September.We chose that one because cholesterol risks are less. We will closely watch bone density. I have been exercising a lot and will continue to do so before starting this treatment. She did say Dr. Paul Goss (Mass Gen/Dana Farber) has been studying effectiveness of varied HT usage (for instance, every other day) and she is open to that if comes to that.I also could return to tamoxifen which I tolerated fairly well.
For those early on in the journey, I started Tamoxifen when I was halfway through radiation. I have tolerated it well. I just want to see how life is without the drug-it's hard to know what is normal menopause and aging and what's the tam.
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SailCA - congratulations on finishing TCHP!!! What a milestone to celebrate and you will have more! Keep moving forward!
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@SpecialK - I don't recall if there was one line for each cycle exactly. However, yeah there were a few white lines going horizontally across the nail. I never knew what they were called just that they were common SE from Chemo
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Jumpship,
Who is monitoring you? You could always ask about a scan at your next appointment, just for your peace of mind. I see you got a BMX, which probably means no mammograms.
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Hello everyone. Im newly diagnosed with left sided breast cancer. I found out yesterday my tumour is triple positive. The biopsy said it was 5/9 on the noghtingham score - so grade 1 (mitosis was 1). I got no other info on it though.
It’s all so new and a bit overwhelming at the moment. Im 39. Married with three kids (14, 8, and 4). I work full time at a community college as a faculty. I also am a doctoral candidate. I meant to be finishing up my dissertation this summer, but that’s definitely not happening.
My surgeon shared the plan with me yesterday. I was paralyzed between a lumpectomy + radiation, Oncoplastic reduction + radiation, or unilateral mastectomy. The surgeon said we could start with a lumpectomy and then hop into chemo and gather more info to help me decide (genetics & sentinel nodes at least).
So far I don’t have a surgery date. The lumpectomy will be within 3 weeks. Then 5 weeks after that I will start chemo and herceptin. The resident said a year of chemo? I think it’s likely 4-6 months of chemo and a year of herceptin? But I don’t know much about that part until after. They also said 5-10 years of hormone blockers.
One question I am really wondering is what will work be like. My work is very supportive but I don’t know if I’ll be able to work during chemo? Any insights from anyone would be great.
Thanks for sharing your experiences. Reading through some of the post, especially survivors, has made me more hopeful.
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1982M - welcome, sorry you are in this particular club. Yes, the chemo part is a duration of months depending on the regimen you are being offered, with the Herceptin continuing for the balance of the year. Herceptin is not chemo, but rather a targeted therapy. Most find that once the chemo+ Herceptin is done that when you move to the Herceptin only infusions things are much easier, definitely the case for me. Do you have any specific questions those of us who have gone through this can answer? There are definitely folks on this thread who have been able to work through chemo - a lot depends on your job and the requirements you need to fulfill on a daily basis. I was working prior to diagnosis - in healthcare - but did use FMLA and short/long term disability because I had some surgical complications, and additional surgeries, that made chemo more of a slog. I was able to return to work 30 days after last chemo, while on Herceptin only.
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1982M,
I also teach in higher ed, and I worked through chemo. However, my course load was 2-2, not 5-5, which is common in community colleges. Also, my department chair allowed me to ditch my committee responsibilities and let me work at home on the days I didn't teach. Finally, I located colleagues who were willing to pitch in and teach my classes if I couldn't. I never needed a substitute, but I felt I needed to be prepared, just in case.
That worked for me, but it wouldn't have worked for everyone. Some people get all the side effects; I was lucky and didn't get very many. You don't know how you'll react to chemo until you start treatment. Herceptin was not a problem for me at all; I had zero side effects from that.
I did choose lumpectomy because I didn't want to do reconstruction and because I didn't want to go flat. (Reconstruction can take multiple surgeries as Special K knows very well.) Recovery was fine; in fact, I taught classes the day after my lumpectomy. Again, I may be one of the lucky ones, so you never know.
I'm sure your dissertation committee will understand if you don't finish up this summer. I didn't undertake any research projects during my "breast cancer" year, and it was what it was. ((Hugs))
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Thank you both for sharing info on working through chemo. My work place is very supportive so hopefully I’ll be able to teach even part time.
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HI there 1982M!
You are at the scariest stage (the not-knowing). I had lumpectomy, 12 taxols and herceptin to round out the year, radiation and now on tamoxifen, so prob the same as what you'll be getting. I worked thru whole thing! I was fearing the worst, and at least for me, it was not terrible. I even requested a stand-up desk at the hospital and worked DURING chemo. You can do it! ; )
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Umakemehappy, how did you do on just the Herceptin? I start that Monday and am terrified of feeling as bad on that as I did on chemo. I was trying to ask on other sites how people did on Herceptin monotherapy alone? I live alone and am just in a worry about this. Asked the onc. to run the first one over 2 hours and she agreed. What do you all think of Herceptin tolerance?
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Racheldog - I have had 3 herceptin (kanjinti) only treatments and other than being a little tired I’ve had no side effects.
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I had no side effects with Herceptin. AI's were a different story!
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Thank you both on the last two entries. You are making me feel better about Monday not being "D" day or incapacitated. Appreciate the experiences of others. I was sick Kadcyla which really spooked me for Herceptin. Thank you.
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Herceptin just gives me a runny nose, for the most part its easy peasy
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Hi, Everyone, I had my lumpectomy and removal of 6 lymph nodes on Tuesday. My pathology report came back today. The TCHP definitely worked, I now only have residual disease in one of the nodes. It was all gone from the tumor and other nodes. I’m assuming that means Kadcyla with the HP next. I see my oncologist on Monday.
One question: when I was first biopsied, I was strongly HER2 positive. Now pathology is saying my HER2 status is “equivocal.” I believe they are forwarding a specimen for additional testing, but can anyone tell me anything more? Can this status change as a result of treatment? If I’m no longer HER2 positive, how does this change treatment moving forward? I’m trying not to worry about it all weekend! Thank you!
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Hi everyone, sad to be joining this group but happy that it's here as a resource. I had an excision biopsy on a lump that the needle biopsy labeled ADH and it turned out to be triple-positive IDC. I just found out Tuesday. The lump was 6mm and also had DCIS, and there was another DCIS identified nearby but the lumpectomy margins were clean.
Since my diagnosis came about kind of backwards, I'm now awaiting MRI and diagnostic mammo to see if there is anything else in there, then will have sentinel lymph node biopsy, then start chemo. Also being sent for genetic testing because I'm only 33, though there's no family history.
I'm still in the stage of alternating between shock (those 5 seconds after I wake up in the morning and before I remember what's happened are great, then it all comes crashing down), terror of chemo and upgraded staging and metastasis, denial that I'm now in this club, and a calmer sense of "OK, this is the path life has suddenly taken, let's get this show on the road."
I'm really worried about chemo. I've been very skinny my whole life and am currently sitting at a BMI of about 17, before we start anything. I don't have any cushion to lose weight. My appetite has always been picky and finicky even on the best days and it takes very little to put me off. I'm afraid I'm going to basically starve and it's going to make my outcomes worse. But I guess I'll cross that bridge with my team when we come to it.
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