Neoadjuvant TCHP - Post Results Here
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DONE!!!!Finished TCHP on Tuesday, November 10th!!! Whoohoo! Due to some lingering peripheral neuropathy in fingertips and toes, they ended my chemo run with only Herceptin and Perjeta, so that the neuropathy won't become permanent. Feeling human!!!! The only side effects so far is a bit tired, but doing my "normal" before chemo day with no problems. Herceptin only until July.
Praying for all of you out here!!!! There is life after chemo, it does end and now onto surgery next month!
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No more chemo! Finished Nov 12! I know if I make it through these next 2 weeks I won't have to go through it again. Appt with surgeon next week, another PET scan week after that, surgery week after that. Somewhere in there is my first herceptin-only too.
Feeling pretty weak today, but at least it's the last time!!
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Congrats JerseyGirl & Resilient! Huge accomplishment. Remember to be kind to yourself as your body starts the healing process.
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Congrats resilient74!!!! Hang in there, you'll be feeling good soon!
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congrats!!!!
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Congrats, JerseyGirl22 and resilient74 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I had some neuropathy, too, but it SLOOOOOOOOWLY started to improve after chemo ended. I'm sure yours will resolve, too.
I haven't had any problems at all on just Herceptin... and I'm now nearing the end of my year of H. They count from when you first start with chemo!
Surgery and RT for me were a breeze after chemo (well, my chemo was terrible with SEs). Good luck to you both!
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April25, I'm praying for a breeze with surgery on Dec. 7th and RT soon after. Also, no SEs with Herceptin only. I've got some side effects from having the Herceptin/Perjeta the last time, think I was doing too much and got really run down the past few days. Feeling nauseous and tired. My SEs were awful for me, too. Wound up having a blood transfusion before round 5 because my hemoglobin went too low... So glad that part of treatment is over.
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It's SO easy to get run down. I was resting a lot and still couldn't avoid it during chemo. But, even though I still had weakness and fatigue after chemo ended--it was still SO much better that I didn't care!
I hope you breeze through the rest of the treatments! It will gradually taper off (the whole all-encompassing focus on treatment). The surgery is new and scary, but goes pretty quick--particularly if it's an LX... MX and MX with reconstruction will take longer, but although some people have some problems, most don't and even those who have problems and set-backs get over them. The radiation isn't too bad. There are several kinds of ways they do it, but they are super-brief sessions (for me, just minutes long), and some people have SEs, but usually they are less dramatic than those with chemo. I felt pretty good through radiation.
Good luck! Pop into the Lumpectomy Lounge if you're doing that. Or the Surgery threads. They are all very enlightening!
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Last November I had Taxol, Herceptin, and Perjeta but not the Carbo.... After it ended 12/29/14, my brain MRI in 2/15 showed brain mets. So obviously it didnt work for me.
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Got word that my surgery date is bumped to Nov. 30th. Big scheduling problems wacky in their system... Glad to go in earlier. April25, I'm having BMX without recon...
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@Resilient and @Jerseygirl, Congrats on ending chemo!! My last treatment really, really fatigued me, but now I feel great except for the neuropathy still hanging on. Had my first H-only tx a week ago Thursday and have had no SEs from it either.
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BjsMiller, so glad to hear about the no side effects from Herceptin... My neuropathy in my fingertips seems to be getting better, very slowly. The balls of my feet and toes are still quite affected... working on it everyday though.
Keesmom, I'm sorry to hear about the brain mets... Grrrr....
April25, Man, that fatigue thing... I was warned about it, but when it hit, whew!
one week from tomorrow NOV. 30th for BMX, no recon... praying I'll be feeling better by Christmas and can participate in the holidays
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Keesmom -- Sorry the chemo didn't work for you. Maybe it did something, just not enough? I hope you've found other treatments that are doing the job. Best wishes to you! And hugs!
JerseyGirl22 -- Well, BMX isn't quite as easy to breeze through as an LX, but it will still be fine. I wish you the quickest and easiest recovery and that you are able to relax and enjoy the Holidays!!!
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I just got my LAST Herceptin tx today! It was a bit of a surprise (although I should have been able to calculate it... my MO hadn't told me, but then he's a busy guy, so I find out when I find out, which is OK by me).
I had my 6 mo. post surgery appt. last week, along with a diagnostic mammo. All clear as far as the mammogram (but there's still that voice in the back of my head reminding me that I found the lump myself, even with yearly mammograms!).
So... I'm just on hormonal therapy now, for 5 or 10 years, they will see how it goes. My MO told me he will now see me every 3 months for 3 years and go to every 6 months after that.
The year of BC was craziness, but once I got used to the idea that it WOULD affect my life for a while, it was do-able. And of course it's still there in the background--but "background" being the operative word! It's kind of weird, actually.
(Still growing in my stupid hair, though! Geesh that grows so slowly!!!)
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Happy Thanksgiving to those who are celebrating it! (gah, having chemo over Thanksgiving would be terrible... but just remember that it will hopefully end and your appetite will be back!)
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I have read every post in this thread intently since my advanced diagnosis earlier this year, and I'd like to share my story (and results) after having completed TCHP in September. I had recurrent breast cancer in my internal mammary nodes and infraclavicular node which was inoperable, so I was always going to be treated neoadjuvantly whether I liked it or not!
The difference between this diagnosis compared to the previous two was that the cancer had mutated and was now strongly HER2+. I'm still trying to get my head around how clever and sneaky this disease is. I had thrown everything at it initially, and although the possibility of recurrance was always in the back of my mind, I continued with my life as though it was never coming back. To say I was shocked and dismayed to have cancer for the third time is an understatement, and then have to deal with HER2+...
Thankfully I quickly discovered all the wonderful targeted therapy available, and this thread completely opened my eyes. TCHP is not a prescribed therapy here in Australia (yet), and initially my MO proposed THP x6. I asked her to add the Carboplatin and we compromised to start off with THP for round 1, then TCHP the rest of the way if bloodwork was good.
Before starting chemo, my CT scan showed ample disease in my nodes with an aggregate size of 12.3cm. By some miracle, the scan did not show spread to my organs or bones, though I have no doubt in my mind that the cancer was (is?) on the move throughout my body. TCHP was my one shot to treat it as aggressively as possible and knock it on the head, so to speak.
After some bumps in the road (for another post), I had a follow-up CT scan after round 4. I expected somewhere between a partial response and no response - bracing myself for the worst. The scan showed there was no evidence of disease. The tumors had been obliterated, and I had two more rounds of chemo to go! I can't know for sure that I got PCR, but I couldn't have asked for a better result under the circumstances. About time something went my way.
I've also completed radiotherapy to my chest wall and neck nodes, and that was a far easier ride than the chemo. I am currently having ongoing treatment with HP and hormonal therapy. I'm feeling strong and a hell of a lot better. I know beating this disease (for me personally) is a long shot, but at this point the future is very much an unknown. I like to think, one of hope..
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Calcon - I get chills reading your post. I'm so glad you were able to find our reports helpful. Congrats on the PCR. That is really wonderful news. I hope that the combination therapy with targeted agents makes the difference this time. Will you have any periodic scans going forward? We wi be interested to hear how you are doing. Big hugs for all that you have been through.
Ann
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April- So happy you had last Herceptin!! I can't wait to be done. Mine is November 30. I am not sure but from what I have read I think Herceptin has been the cause of my slow hair growth, pain in my joints, fingers and brittle nails. This has been a hard year to say the least. I still am dealing with my TE and expansion. I sure hope to start feeling better in 2016. 2015 can go to you know where.
Calcon- prayers for you to get PCR with TCHP. One of the positives is that Herceptin is a successful targeted therapy for HER 2 + cancers. Hugs to you for your strength and perseverance. I had a Stage 1 on left in 2006 and then Stage 2 in right 2015. It came as quite a shock. My 2nd Breast cancer was Her 2+.
Hugs to all of you and Happy Thanksgiving!
PMR53
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Calcon -- I am so happy for you that you got a good response from TCHP!!! The good thing about being HER2+ is that there is Herceptin. Apparently it has made a HUGE difference. And TCHP seems to be the standard of care at the moment (although the MO that I stopped going to originally only was for TCH). Yes, you've had some very bad breaks, but as long as there are new treatments out there and they work for you, hang in there! There are all those immunotherapies in the line. So there is always hope. I wish you luck!
Oh... just wondering, did you get a port put in? And did you keep it in? This is my first round with BC and I am about to get my port out, but there are those who say it's better to keep it in, just in case it's needed again! But I really, really want to believe it WON"T be needed again, of course!
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April: I finished my last Herceptin September 2014. I've always loved my port. My MO really wants me to ditch it because he thinks emotionally I will put BC behind me. Well, that was true the first time. Not so much after the recurrence. I'm all for keeping the port awhile longer. I have lymphadema and I won't have blood draws through my arms, so the port is great for that. And even in the hospital, there are very few who can draw blood or start a line in the foot. I just have to get it flushed every 60 days. My port doesn't show with any of my clothes and has never bothered me, but i expect I'll finally get it pulled the middle of next year. I will first argue for a PET/CT so they can do the nuclear contrast through the port. Good luck which ever way you go.
BTW - my BS told me there would be no problem if I need another one some day down the road.
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april25 - I finished Herceptin in January, got my port out in March. I loved not having that in me. I like my surgeon but I had a neck insertion and that thing bothered me the whole year it was in. It still bugs me in my neck. I might need to get a new port placed depending on what I need to do next. I don't regret having it out at all though.
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MinusTwo -- Oh, I can definitely see clinging to my port if I had reoccurred! Right now, I suppose I should think positively and not worry about that happening. It either does or it won't... And my MO hadn't said to keep it in...! Very good to know that placing another port shouldn't be a problem. I've heard that it COULD be from some people... But maybe it depends on certain factors. Plus, I'm hoping that if I ever need another they will have an updated model by then that is a bit smaller...! Mine is OK, but it's still a bit obvious and sticks out a bit...
agness -- Thanks for your thoughts. Although my port has been very useful, I think I will feel more "done" if it's out. Of course, we're never "done" are we? Particularly getting older, I can see a bunch of things looming in my future (I've got thyroid nodules and probably will get my thyroid out sometime sooner or later, for instance). I'm glad that you don't have regrets over getting your port out. That's reassuring.
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Ann,
I am having my next CT and bone scan in January, then every 4-6 months with longer intervals as time goes by. I'm also having a heart echo next month and will continue those periodically for as long as I'm on Herceptin.
I feel a bit like a sitting duck at the moment, particularly for brain mets. I don't have symptoms and feel fine right now, but it may be prudent to have a brain MRI down the track. At the very least, I'll be listening closely to my body and won't hesitate to get further tests at the slightest change. I must also thank you for the wealth of information you've provided on this topic. Likewise, I would love to know how you're progressing. Hugs to you too
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Hello
We had 2 cycle neoadjuvant chemotherapy. 1 cycle TEC ( taxotere epirubicin cyclophosphamide ). After HER results we switched epirubicin to herceptin. In the second cycle we got taxotere cyclophosphamide herceptin. We had usg today and only axiller lympadenopathies shrinked but the tumour size is same. I am very worried our chemo is not working. Do you have any results like that?
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PMR53 - Thank you for your encouraging words. I feel heartened knowing there's such effective therapy for HER2. Sounds like you've also been through so much this year. I wish you well.
april25 - I have a whole other story with my port! I had it inserted in the left side just before starting round 2 of chemo. Then I had my infusion the next day and all went well. Unfortunately I developed a fever and severe swelling of my left arm in the following week. The port area was also red and swollen. I was admitted into hospital and was diagnosed with a golden staph infection, and the port had to be removed immediately. As an alternative, I had a PIC line inserted in my right arm shortly after. I was placed on IV antibiotics, and it was discovered that I had a blood clot in the vein where my port had been inserted. This explained why my arm had swelled, as I had done some body weight exercises the day before going into hospital. I was put on blood thinning medication and had to self inject into my belly twice a day. A few days into my hospital stay, I caught influenza type A (there was a flu outbreak in my particular ward, and of course, with my lowered immune system, I was a sitting duck). I had a relentless fever for about 12 days, and had never been so sick in my life. I was forced to miss the third cycle of chemo as a result. I was so devastated, and this whole ordeal was a true test of my patience. I stayed in hospital for 13 days total, then hospital in the home for another 17 days, all the while being hooked up and self injecting. I ended up having my 3rd round of chemo while I was still on IV antibiotics. I switched to oral antibiotics for another 2 weeks.
Honestly, I couldn't make this up - what a year it's been. Obviously, I fully recovered from the golden staph and flu, and my blood clot has finally resolved as of 3 weeks ago. My PIC line was removed after I'd finished chemo, and it worked really well the whole time. At the moment, H and P are injected through the veins in my hand as they're quite good and holding up. The nurses assure me that Herceptin doesn't trash the veins like chemo. I plan to have a new port reinserted some time next year, but understandably not in a hurry as the bad memories are still a bit fresh!
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I'm still NED as of last scan, plus I haven't had symptoms that they were looking for. My next scan is Monday and I meet with the neuro-onc Tuesday. I'll report back then. My only complaints are external, my nerve by the base of my skull has been pinched by scarring from surgery and rads so I have facial pressure stuff going on and issues with my shoulder. My chiropractor has been very helpful. I've got a foam block to lay on to try to stretch things out.
Happy turkey day.
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Agness, so glad to hear that your last scan showed you still NED!
JerseyGirl, I previously boasted of no SEs with Herceptin, but the last two weeks I've been feeling very achy, like sore muscles. I'm not sure if it's because of the Herceptin or the Zometa I'm on, too, for bone mets. Oh well, still not as bad as the whole TCHP, no taste, fatigue, etc., etc. Wishing you the best of luck on your BMX tomorrow. I'll be having a LX in mid to late January; no recon. But first, radiation to my hip and spine during December.
Keesmom, so sorry to hear of brain mets, but keep us posted.
April25, congrats on the last Herceptin for you!
Best to everyone and hope those who celebrate Thanksgiving had a nice holiday. -Barbara
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Vildanbt -- I just had fairly typical TCHP, neoadjuvent, 6 cycles (every 3 weeks). My carboplatin was reduced after the first cycle due to SEs (diarrhea/dehydration), but that didn't really make much of a difference, so I'm surprised they kept it reduced... I just had 24hr IV drips for 2 weeks straight each cycle. I used my port for the IV drips and when I was hospitalized, so I was happy for my port.
Calcon -- Wow. I have heard other bad stories concerning ports. I'm sorry you had such a bad experience. Infections is probably one of the main problems. I know the nurses were always super-worried about it. I was lucky in having no problems. It's why I worry about about getting my port OUT since it's been pretty much trouble-free so far. I even had to change the IVs myself and do flushes... and I was NOT terribly good at it (I would forget about the timing, for instance)... and it was forgiving of my mistakes. (Just did it through the already inserted line of course. I couldn't do THAT!). I'm sure I'd have all kinds of misgivings if I'd had your experience. I wish you all the best with your new port!
Just curious. Your latest is a 6cm... Did that occur after a 6 month mammogram? Or did they just not see catch it in the earlier mammogram?
I had a 3cm that I found myself. I had a mammogram earlier in the year that didn't catch anything. So I'm left wondering if they just didn't catch it and that I should push for more than a mammogram (ultrasound, whatever), OR was my tumor just THAT fast-growing? People kept telling me tumors don't grow so fast... So I'm just a bit confused.
Plus... I think I might have felt something even earlier, but I knew I had a mammogram, so I discounted what I felt for a few months! I had no idea that mammograms don't catch these things... Or maybe tumors just grow that fast? If so, then wouldn't more frequent mammograms help? I know I'm getting them every 6 months--but not in both breasts--bilaterally only yearly! Although they told me it was partly because I had an MRI before my LX... but ... ??? And I know some women have cancer bilaterally! Is it that rare that they still don't like checking for that? Anyway, it confuses me. I guess I should ask my MO more questions, but he's busy and I see him less and less now...
agness -- Congrats on still being NED. Hopefully that will continue!!!
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I would hazard that if you had a PCR that annual mammograms are sufficient for monitoring risk of disease. If you didn't have a PCR then maybe twice yearly for a few years might be beneficial. This is also assuming a twice yearly manual exam plus ongoing monitoring of your own breast tissue -- and anything else.
I think they don't do them more frequently because they are trying to reduce exposure to radiation. It is really low with mammograms but they know that exposures add up over time.
I had a congested breast duct a few months ago. They gave me a mammogram on that one side and then did an ultrasound. The radiologist said that ultrasound is the best when there is a specific area of concern. He made it sound like if there are specific areas of concern that we can get specific u/s imaging to help rule things out early on. It was reassuring.Ann
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agness -- Oh, no PCR for me, so I guess that's the reason I'm getting the mammograms in the affected breast every 6 months, and the other breast yearly. Still makes me nervous since, as I said, I'd been having yearly mammograms and they didn't find my tumor... I really wish there were better ways of catching these things, if I've got dense breasts or fast-growing tumors (which at Grade 3 this time out is probably the case). But oh, well...!
I complained about it all when they were doing my diagnostic u/s after I came in after finding a lump, and they said the same thing, that ultrasound was only good to look at specific areas. But it still seems that there should be something. At least I'm getting the digital mammograms now (as opposed to the once that didn't find my tumor). Maybe that will help?
Are 3D mammograms something different to the digital ones?
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anyone give gifts to their infusion center after they finished with their chemo and herceptin?
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april25 - I'm not up on my mammogram technology but hey, did you catch this study (makes me laugh) http://www.ncbi.nlm.nih.gov/m/pubmed/26581091/
I got my brain MRI results and unfortunately not good news. My cancer decided to go be lepto-meningeal disease which usually happens later in disease course. As it is HER2 there are developing options but I'm starting back on treatment later this week, which will include having a port placed into my skull next week to get Herceptin into my spinal fluid. Totally sucks but there is a protocol out of MD Anderson that is working for patients so at least there are options. Wish me luck.
Just to explain further to the gals on this list: I was 40 when my second child was born, I did extended breastfeeding which appears to have negatively affected my magnesium/zinc/ferritin/copper levels and I suspect caused insulin dysregulation. My ob/gyn told me to wait until I was done nursing to start mammograms. I didn't think I was at risk of breast cancer since breastfeeding is supposed to be protective and cancer doesn't run in my family. I was probably sick for a year or two before I was diagnosed with locally advanced disease that had spread into my axilla and behind my breast bone, and evidently was already in my central nervous system prior to treatment. I had a PCR to systemic therapy and no signs of brain mets until April of 2015 -- 8 months after TCHP, 3 months after Herceptin.HER2 still likes to spread into the central nervous system where it is protected from treatment but to have this as the first site of mets is rare and I still think the great systemic responses reported here meant a great deal. Don't assume that my situation is yours but be prudent about not assuming that it might not be central nervous system involvement. There is supposed to be a low barrier for HER2 patients to get brain scans, you can even lie if you need to get them to look at something so that insurance will pay for it.
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agness -- I'm so sad to hear your latest news! I wish you all the best in the world (prayers and hugs and everything), and hope your treatment is successful. It seems to me that all of us are always at risk of something happening, no matter what. Just have to hope there is some treatment that can be effective and keep hanging in there. So many treatments coming down the line, and just got to keep going in hopes one of them will work.
Thanks for telling us about the increased risk of central nervous system involvement. I'll have to make sure I'm getting checked often and carefully enough anyway.
I didn't even get a PCR. I guess you can never tell with these things.
So much positive thoughts headed your way!
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Heh. Pidgeons reading mammograms is so amusing. I wish I had them double-checking mine! Funny image, seeing a pigeon studying those images... and that they tend to be so accurate!
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