Taxotere, Carboplatin and Herceptin
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Everforward funny you should say this. I just had treatment 3 and my stubble has stopped and I THINK that the hair on my legs is growing!! ugh - that I didn't want. But my eyebrows are definetly thinning. Just had my third treatment - so not looking forward to the next two weeks of the dementor visits!!
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I never totally lost ALL of my hair. I still had some hairs that never fell out an indeed continued to grow. I buzzed them off once or twice during tx because I looked so ridiculous, kind of like a baby bird when it is just starting to get its feathers!
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Well, I am four weeks after TCH #4, and my blood platelets were still too low to continue. This is starting to scare me. As I had blood platelet counts on the lower end of normal before, my MO suspects that this is why it takes longer to recover, but still it's not normal. So, I am on a break right now. She suggested waiting two weeks and is only giving me Herceptin now, and in two weeks she wants to do a bone marrow biopsy if the count has not come up sufficiently. This scares me, but I am trying not to go crazy yet. The MO told me that she thinks that this is really a bump in the road and not more, but she wants to find out what's going on whith my platelets and thus, my bone marrow. I do trust her, but this has been dragging on for a while, and is starting to get to me. On the positive side, I found a nice Yoga class (it's restorative yoga, kind of "old lady yoga", but after a long yoga break, that's what I need). Hope everyone else is doing well.
Alexandra
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Yes. I'm about 6 weeks PFC, and have quite a bit of peach fuzz on my head now. It's almost starting to look like real hair, but it'll be a while yet before I start going without a hat.
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Had H only last Friday and I am amazed at how good I feel. Just some residual muscle stiffness. I think I need that old lady yoga Summerwheat was talking about. I have peach fuzz going on. We laugh that I might actually need a haircut by Christmas.
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summer - have you discussed a platelet transfusion with your MO? At my center when people are delayed for low platelets that is usually what they do. This is common with CI low platelets if they feel it is a bump in the road.
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Special - Good call.
At my center they don't transfuse whole blood until the hemoglobin is below 8.0. I only got there once & it was Christmas week when everyone was off. I did take off an extra week for blood levels to come back up one other time. Usually I managed to stay above 8. My MO always said my platelets were OK even through they dropped below 100 a time or two.
Summerwheat - good luck. This is such scary stuff.
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TCH experts - I've got a nails question. I am 10 weeks PFC and just lost my 3rd fingernail. Basically, on all of my fingers I've got (almost) half a nail's worth of new growth. Above that, the nail is pretty much dead/lifting. For my 7 nails where the top half has not yet ripped off, I've been keeping on nail polish/sally hansen strengthener and it has been working till now to hang on to them.
My onc seems totally unconcerned with this.
I'm not very concerned myself, but I wonder what I need to look for in terms of infection. When my first 2 nails came off (ripped at the halfway point) underneath the new nail looked clean and fine. With my 3rd nail (just ripped today) it looked kind of grimy. I can't tell if this is something to worry about or not. I won't seen my onc for another couple of weeks. Anyone with experience with nail issues?
And, for the record, for those who are icing - keep it up! Don't take this as a sign that icing does not work! I did not ice
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oranje mama - if you don't get an answer in here - try the Feb 2014 chemo thread - Lago posts in there often to help out - she did TCH back in 2011 I believe and had nail issues and she might be able to give you some good info.
Here is a link to that thread
https://community.breastcancer.org/forum/69/topic/817350?page=39#idx_1170
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Oranje - I'm losing my two big toe nails but fingernails are hanging on. They are still brittle & soft and the nail bed is damaged quite a way back. I've felt like I had 'grime' under all my nails that I didn't seem to be able to clean. Now that I've started water aerobics 3x a week, it's brighter & cleaner looking under the nails. Maybe just the soaking? For the record - I did ice but wasn't as vigilant w/my feet. And I am still on Herceptin every 3 weeks - another nail damager.
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I would ask to have a consult with a dermatologist to have a culture done on what is under your nails. I had one that was injured prior to starting chemo when I had the acrylic removed. It ended up lifting and was wet and icky (the technical term, lol!) underneath. It was both bacterial and fungal on the culture. You also want to check for an off odor. I was given a prescription for it and had the complete nail removed. I did not bleach my nails but you can also try that.
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Some of my nails look like they were smashed, like pooled blood under the nail. Two are a little tender when I push on them. Is this is a typical reaction?
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Hi everyone,
I posted this on another thread, but thought I would copy it here too since there is similar activity. It has been a long time since I posted on here, mainly because chemo had me pretty sick, and I didn't want to be a bummer for those of you going through this new protocol because it looked like I wasn't following the same wonderful course.
Well, I made it through my six sessions of Taxotere, Carboplatin, Herceptin and Perjeta, and had a bilateral mastectomy with immediate reconstruction on May 30th. I just received the pathology report day before yesterday, and I was very surprised.
For those of you that remember me from my initial posts, my initial diagnosis was IDC, 2.5 cm extending to 6 cm with suspected involved DCIS. This got me the neoadjuvent treatment including Perjeta which had just been approved for neoadjuvent treatment only for early stage bc with tumor size 2cm or more. The tumor was 0% ER/PR staining, 100% staining 3+ Her2Neu over expression.
But then I had a pesky MRI and they found another separate lesion, prompting an MRI guided biopsy on a tiny 4mm finding. Turned out this one was ER/PR positive, Her2 negative and again invasive, but only grade 1. But it was so inconsequential compared with the other tumor, they decided to go forward with the neoadjuvent chemo regimen targeting only the Her2 positive tumor.
In early April I had another Pet scan, and the Her2 tumor seemed to be shrinking, but still there, but the hormone receptive one seemed to have grown tremendously. I thought what they were looking at was a hematoma from the biopsy because I had sustained a huge bruise on that breast that lasted months, so I wasn't too concerned.
Well, here's the interesting part. The pathology report is in, and that nasty Her2 positive tumor is literally gone! I had a complete pathological response cPR on that tumor, and all that was left was the clip. BUT, the little 4mm hormone receptive tumor grew from 4mm to 3.7 cm in that short time between starting chemo in January and surgery in May. It also changed from grade 1 to grade 2, SBR score 7. There was also expansive DCIS grade 3, central expansive "comedo" necrosis. Apparently that means there were dead cancer cells throughout my ducts, I assume from the suspected DCIS surrounding the first tumor.
I am literally a petri dish for effectiveness of this chemo regime for Her2 positive neoadjuvent targeted therapy because it shows how incredibly effective the Herceptin and Perjeta were in targeting the Her2 proteins, but yet the hormone receptive tumor was literally growing out of control because I had no hormone targeted therapy during this time. My surgical oncologist believes that it grew so rapidly due to my immunosuppression during chemo. It goes a long way to prove the protocol of neoadjuvent treatment for Her2 positive cancer, but for hormone receptive cancer, immediate surgery and adjuvent treatment later.
I am so happy with the outcome of the more dangerous Her2 positive tumor. And, I am so thankful for UCLA Dr. Dennis Slamon for his work on Herceptin, and now his involvement with Perjeta. Having the opportunity to see so clearly the effectiveness of this targeted therapy with my unique situation with the two tumors really sends home how fortunate we Her2 positive patients are to be treated now and not 15 years ago.
My next hurdle is getting through this rather painful mastectomy and reconstruction surgery. That's a story for another thread….
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Marvel, thanks for sharing your story. That's really interesting how this cocktail was so effective on the HER2 + tumor but did absolutely nothing to stop the other one. I know Herceptin specifically targets the HER2 protein, but I would have thought that the Carboplatin and Taxotere would have some effect on the other tumor regardless of HER2 status.
I am supposed to have my mastectomy after I finish chemo in August. I will be curious to hear how your surgery with immediate reconstruction works out for you. What made you decide to go that route instead of the tissue expanders?
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Marvel, thanks for sharing your story. It is fascinating (although I wish the outcome was that the TCHP had destroyed both tumors!) And interesting that Taxotere & Carboplatin had little to no effect on the hormone+ cancer. I guess this was also a surprise for your docs? It must be very rare to have two different BCs at the same time, no?
I had a "near" PCR. My tumor was estimated at 2.5cm at diagnosis, and after TCH, it was almost gone. At surgery, the largest cluster of abnormal cells was 3mm (and they could not grade the cells because so small). (As a footnote, I did not get Perjeta - my onc had initially recommended it, then changed her mind after San Antonio Dec '13 because my cancer was (weakly) hormone positive and she interpreted the results presented in S.A. to show that Herceptin alone would become standard of care for Her2+, hormone+ cancer.) My docs were very pleased with the result - apparently PCR is seen more often with hormone- cancer, and the neadjuvant response with hormone+, even though Her2+, is not always so great. My cancer is very strongly Her2+ (literally "textbook" Her2+ as my onc pulled out a textbook to demonstrate) and only weakly hormone + (15% ER, <5% PR) so maybe that had something to do with my great response.
Ddgm1003, that is exactly what several of my fingernails look like. My toenails, for whatever reason, seem to have faired better. They are discolored (yellowish) but that is growing out. And my toenails are not fragile or lifting.
I have an appointment with the dermatologist on Wed. (first appointment I could get) to get my nails checked. I'll report back here with what I find out. Going to ask about the pooled-blood-looking nails as well as those that have already ripped off.
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EverForward, actually, I didn't have a lot of input on the decision to go direct to implant, which is a little disturbing to me. My surgical oncologist was rather rigid in his view of the reconstruction side. He works with one plastic surgeon whom he feels is the most competent in the area. Don't get me wrong, I do really like this plastic surgeon. He has great bedside manner, is highly communicative and patient, but choice is a big thing for me. Well, long story short, I decided it was more important for me to concentrate on the cancer side and continue with my breast surgeon of choice rather than to change mid-stream. This plastic surgeon felt that because of my ample breast size, and my willingness to reduce from my ample D cup to a C cup, that it would save me a surgery to go direct to implant. He said that he would evaluate it during the surgery, and if it didn't look like it would work, he would do the expanders. This all sounded very logical, so I opted in. However, I think it is a pretty big shock, even with the aid of the alloderm sling to have that large an implant (525 cc) inserted under the muscle. It has been very painful, and is causing a lot of muscle spasm. I am not sure if this happens with the expanders to this extent. It seems logical that there would be less of that if the tissue is gradually expanded. And now, with the necrotic tissue that has developed, it looks like I'm not going to avoid the extra surgery after all. So, I'm not sure if I would recommend it in hindsight in a situation such as mine.
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Orange mama, yes, I wish the chemo would have destroyed both tumors too, especially as difficult as the chemo was on my body. I had a lot of side effects including nausea and vomiting, diarrhea and finally peripheral neuropathy. In viewing other chemo regimines for ER/PR positive, Her2 negative tumors, I don't see Taxotere and Carboplatin used routinely. And they are almost always adjuvent rather than neoadjuvent treatments. But to have that tumor just grow out of control really has me thinking. And yes, I do believe it is very rare to have two totally opposite tumors in the same breast, so I really feel as though my situation should be important to learning how different treatments affect different tumors. The fact that there were dead (necrotic) DCIS cells all around the clip left from the first biopsy really solidifies the fact that the targeted therapy was extremely effective for the Her2 positive tumor. And then the other tumor starting at only 4mm, not showing on any other test than MRI, but ending up at 3.7 cm, changing from grade I to grade II with grade III DCIS surrounding that tumor shows you that my chemo regimen not only was not effective on that tumor, it seemed to feed it! Remember, that first tumor was 100% Her2 +++, and 0% ER and PR staining. And the other one was 0% for Her2, and strongly ER/PR positive. About as opposite as you can get.
This all got me to thinking about my history before my diagnosis. When diagnosed, I beat myself up pretty bad because I had gone three years between mammograms. But I had been extremely stressed at work the two years before my diagnosis and especially the summer before. By late August, early September I had developed extreme fatigue that I just couldn't shake. I was previously a night owl, and could get by on 5-6 hours of sleep, but I found myself hitting the pillow as soon as I got home from work, and feeling tired when I awoke the next day. From what I have read, fatigue is not a symptom normally associated with breast cancer, but I think it is important here if my theory is correct, and that tumor grew very rapidly due to stress. My surgeon originally stated that due to the fact that it was grade II to begin with, he thought that tumor had been growing very slowly for up to five years. While I didn't have my regular mammograms, I did have physical exams and self exams, and neither I nor my doctor detected that very palpable tumor. This makes me think it didn't grow slowly, but rather it developed rapidly as a result of my stress level.
I am currently re-evaluating my work situation. I am eligible for retirement with a decent pension at age 55, which comes up next January. I am seriously considering taking early retirement because I believe the stress of my job may have contributed greatly to the development of my cancer. I am a senior manager for state government, and our department has been turned upside down by a political "scandal" over the last couple of years, and it doesn't seem to be letting up. My best employee was diagnosed just two weeks before me with thyroid cancer, so the timing of all of these things have me really questioning whether stress played a major role in the development of both of our disease. If not a cause, it might have greatly accelerated it. If the stress of being immunocompromised accelerated the rapid growth of the ER/PR positive tumor, who is to say that my work stress didn't cause the Her2 tumor to grow out of control?
Meanwhile, I am extremely grateful for Dr. Slamon at UCLA, who not only developed Herceptin, but also was on the team to develop Perjeta. Things were a lot different for Her2 positive people before we had these treatments in our arsenal! As for the Taxotere and Carboplatin, I think they work better to prevent metastatic spread of the disease for ER/PR positive ladies and the targeted hormone therapies are the saviors for these tumors. I think my example really shows how important these treatments are as I had not yet received any targeted therapy for the second tumor. I think it also goes a long way to explaining the aggressiveness of triple negative BC where they don't have any highly effective targeted therapies.
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Marvel - thank you for sharing your situation. I'd like to address the work question, if I may. I was dx after six months of THE MOST stressful work situation i have ever been in. I was in a contract renegotiation (the entire sales force was affected, not just me) and it culminated in almost half the sales force leaving to go to another company (including me), and facing the risk of being sued for violating a non compete. This might not make sense, but trust me, it was incredibly stressful every single day. I remember saying I could feel the blood coursing through my veins, I had so much adrenaline (and probably cortisol) all the time. It was horrible.
Six months later (after a successful career transition and no lawsuit!) I found the lump. I am convinced that the stress of that time contributed to the growth of the tumor.
So, while I stayed at my new job (now with a company that i LOVE), I took time to reevaluate and made a lot of personal changes to greatly reduce the stress in my life. More sleep, more vacations, more time to smell the roses, less getting worked up over work situations, less fear/drive/anxiety about work, more focus on family, less on money. Five years later (today) I am so much happier and healthier. I could not be happier with the changes I have made.
This all leads me to say - IF you are in a situation where you are not in control of how stressful your situation is (and politics surely qualifies!), and IF it does not look like it will improve, and IF you have the financial resources to live without that job's income - then to me it adds up to ....GET OUT! You are my age, and have lots of years ahead and lots of experience/skill to offer. You may be able to get a nice p/t job with less stress and some income, or even something f/t in a lower key environment. Or you can volunteer and get involved in things that matter to you. I don't know if you can keep your health benefits upon retirement, but even if not, with the ACA now you can get your own health ins w/o worrying about preexisting conditions.
If you believe that the stress contributed to your tumor's growth, then you have to be good to yourself and take steps to change that part of your life. I always say i make my lifestyle decisions based on the goal of NEVER hearing those words "You've got cancer" EVER again!
Please PM me if you have any questions. I hope this didn't come across as a lecture, but I really feel very strongly about this subject. And so many women aren't able to make the changes the way you are. You are very fortunate in that regard to have the option.
In sisterhood - Amy
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Amy, I agree, and have PM'd you.
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I think I know the confusion b/c I saw 2 oncologists. One recommended 6x TCH and the other recommended 4x of TCxH (though called TC).
One is Carboplatin and the other is Cytoxan. Carboplatin is used more often with HER2+ BC.
I am starting Chemo on 6/25 and had to decide which to take. My Onc said I could do 4-5 round of TCH because I have only .6cm of IDC, but 6x is the standard treatment. I might settle on 5x....I haven't decided. FYI- one if the possible side effects of Cytoxan is leukemia....so don't be jealous!!!
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marvelher2, I agree with Amy. If you are able to retire early and lead a less stress-filled life, do it. I retired early due to my having breast cancer. I was diagnosed last April, surgery in May. I'm a college professor and I had surgery the day after classes ended in May. I took the summer off, which I could do, and took a leave of absence for the fall semester. I decided not to go back for the spring semester, and am now teaching online classes from home. I am also the full-time caregiver of my 94 year old mother, and working full time was too much. I had planned to work for at least 5 or 6 more years, but am glad I was able to step back and relax and enjoy life more. I have my last Herceptin tomorrow. Its been quite a year.
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flaviarose, congratulations on your last Herceptin tomorrow!!
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thank you :-)
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I just have to rant a bit. Or a lot.
I see an MO in Laramie, that comes up weekly from Fort Collins. Nice guy, good bedside manner, and my favorite part, he wanted me to see a super amazing specialist out of the university of colorado for a second opinion. Told me that if her tx plan varied from his, we'd do hers. I loved that. Their txs were identical except the other MO added perjeta. Cool. Everyone's on board.
Fast forward 2 treatments. About 12 days after tx 2, I start to feel serious anxiety about the effectiveness of my chemo. I can't imagine it's uncommon or unreasonable, it's not like I can SEE my cancer, but I can't sleep and my mind is racing. I used the cold caps to save my hair. I can look in a mirror or touch my hair and know it's working! So I want some relief from this stress. When I call in, I'm told he can prescribe me an anti anxiety. I don't need more drugs! I need measurable info that will alleviate my fear or give me a chance to reevaluate my drug regime. Sooooo, I asked about tumor markers and he said there aren't any for my cancer. What???? How is that possible? I have pretty typical er/pr+ her+ cancer. At that moment I realized that I had lost confidence in my MO. So I said I'd like a 2nd pet scan to compare to my pre chemo one. He hemmed and hahhed, but agreed. Thank god I have incredible insurance to cover the stupid $6000 scan, sheesh! I didn't say anything to anyone because I stay in touch with the other MO, and she can 'encourage' him to do things if I'm really not in agreement with MO 1.
Fast forward to Monday. I had my pet scan, no big deal. I also had an appointment to see MO Tuesday morning to go over the scan and do my bloodwork for today's chemo. Well, he called me about 3 hours after my pet and left me a vm to call him back on his cell. Immediately my stomach drops, this cannot be good. I call back and he tells me he's very concerned because 1 lymph node is shrinking, but the other was slightly larger, like a millimeter or something. Something well within the range of error, but not shrinking. WTF?!? He said he was calling the other MO and would call me back ASAP, but don't plan on chemo weds in case it needed to be changed. Ok.
So my entire day was ruined, as I'm certain you can all understand when you get blindsided by something new. I heard nothing back from MO, so yesterday I called the clinic and spoke to his nurse. She had NO idea what I was talking about. She tried to call MO #1, but after 3 hours of no response, she simply called MO #2, who spoke to her immediately as was like what the heck???? This chemo is working like a charm! Apparently MO 1 didn't compare the two pet scans to see that the SUV number (which I guess looks at the sugar reactivity of the cancer cells,) and they're reducing as they should be. The one lymph is just a little reactive, which is completely normal!
Are you mother freakin kidding me?!!! I had the worst 24 ever. I thought for sure this was it for me and I was just beyond devastated. Then 24 hours later I'm told my chemo is working just like it's supposed to be. So I've swung from devastating loss to elation and relief. I'm very grateful be heading in a positive direction, but dang, why didn't he wait until our appt less than 24 hours later when he'd have both pet scans to compare? I'm absolutely dumbfounded by this.
So I fired my MO today. Called the second one, and she gave me an awesome referral within the same Laramie cancer center. I also had my blood draw for tumor markers today. Unbelievable!!!
Anyone have an awesome experience like this? And if not, I Highly recommend listening to your gut! Lol!
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wyomama - What a mess. Glad you have a new doc. Sounds like # 1 hasn't got a clue.
From what I've read most MOs don't depend on the tumor marker blood test because they are not reliable. Nice to have a number, but it's only a possible indicator.
I had a PET/CT and MRI before chemo and another one after all 6 treatments before surgery. I don't think many docs will test in the middle of chemo so it's interesting that you found one.
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hi ladies, i havent been here for a while. i only have one more herceptin , last one will be on july 09. i started chemo and herceptin on july 17, 2013, so does it seems right my last one is on july 09? i never skipped, i always have herceptin on time.
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flaviarose, yay on your last herceptin tomorrow!!!
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soriya, yes that sounds right. I believe Herceptin every 3 weeks is given for 17 doses which is 51 weeks. So you are right on schedule.
flavia, yay for last H!
wyo, glad you found an MO that you have more confidence in.
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wyo - tumor markers done during chemo are unlikely to provide accurate information. They are skewed by inflammation and this can cause the numbers to rise, and make it appear as if they are increasing. If you were anxious before having tumor markers done, and then had them increase during chemo, it would not be helpful or correct info. Many MO do not do them at all as they are notoriously unreliable, and there are many women on this thread who have never had one. There is no specialized tumor marker for Her2+ cancer, so maybe that is what your MO meant. My CA 27/29 that was done after chemo was finished was three times the high normal - and I had already had surgery - BMX and ALND. It took months for those numbers to return to a "normal for a cancer patient" range due to all of the soft tissue damage and irritation from chemo. As far as the PET scans - the comparison should have been done by a radiologist - not your oncologist. Personally, I would not want my oncologist reading my scans, since that is not his area of specialty. I think you did the right thing in getting a new MO if you are not confident in the one you had - it is a long relationship and you need to be comfortable, but it is important to understand the limitations of certain testing at certain times, certain testing in general, and to let the docs who specialize in each area do their thing.
flavia - yay!
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specialk, thank you! None of this was discussed with me or explained by him, which just added to my lack of confidence.
I agree as well about having a radiologist do the reading of the scans. My situation so far has not been that way. First scan was read by 3 mo's and a general surgeon lol. I remember thinking to myself, I'm in crazy town here.
I'm hoping with the mo change I'll start feeling better and can mentally stay on track
Ultimately, my scan showed that this thc+p really does work, and the side effects aren't for no gain. It's what I need to get me off the proverbial ledge 😜
Here's hoping everyone is feeling great today and se's are minimal or non existent. Thank you all for the constant support, it reduces my fear and uncertainty so much.
Hugs!
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