ER-, PR-, Her2+ Roll call
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Perjeta is another monoclonal antibody used with Herceptin. Most of the ladies on it are stage IV. The insurance companies are really tight with who gets it.
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I see that noone has been on this thread for about 2 years now. Are the ER-PR-Her2+ people still out there? Just wondering if anyone that had TCH knows the dosages of the TC they were on and if they are having problems with blood counts years out?
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kbarry, I will be 2 yrs out from the TC part of chemo next month. My blood counts have remained in the low normal range.
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Thank you sewingnut for the explanation of perjeta (figures about the insurance companies!!)
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This thread is still fairly active and there are a lot of us out here.
I don't know what the exact dosages of TCH I got were especially since they were based on my weight on chemo day. I never had any bad blood count issues at all though my MO had me on Neupogen just to be sure. My numbers would dip a little but they were always fine when I would go in for my blood work two days before chemo. I finished the TC part (6 3 week cycles) last November and I'm still on Herceptin. All of my scans have been coming up fine so far.
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2 years out from TCH here too and my blood counts are normal too. Low end of normal, but still within range. I had one transfusion for Hemoglobin of 8.0 in the middle of treatment.
There isn't a lot of traffic here, I agree. The ER+ thread is much more active. Maybe because they continue w the anti hormonal agents for 5 years.
I also read at her2support.org. Lots of good info there and the whole site is all HER2+.0 -
I started TCH in April 2008 and still check in occasionally. MinusTwo - Yikes - DCIS, a BMX, THEN recurrence a year later - so sorry. Hopefully the Perjeta will knock that recurrence BACK.
Some of you have discussed scans - I had a PET/CT between surgery and chemo, then another one about 3 months after I finished Herceptin.
Blood counts were mostly in the normal range soon after finishing TCH and have remained so.
I knew other ER-PR-Her2+ women when I was here 5 years ago, but most that I have stayed in touch with are out enjoying life!
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Michelle, good luck to you. Hoping that it all goes well with minimal SE. Be praying for you.
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Thanks - I'll keep reading & a positive attitude that I'll keep on working. Am blessed that I have very flexible & wonderful employers. You all are in my prayers.
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Just found this topic and have lots of questions.
First, a bit about my HER2/neu status. My biopsy results came back as strongly negative for HER2 by the IHC test. Then the FISH came back strongly positive (a "discordant" result). After my surgery, they repeated the FISH test using more material from the tumor. It came back indeterminate: 1.94, 6 points below the cutoff for being positive and receiving herceptin. My oncologist talked it over with others and decided that they "wouldn't deprive me of the benefits of herceptin" just because I was a few points too low.
Right now I'm going through the first round of chemo (AC), but will be starting the TH part in the summer once the AC is done. I've scanned through a lot of the previous posts on this topic, so I've got an idea of what to expect SE wise.
I have two questions at this point. First, I noticed some people had had a MUGA test prior to starting the Herceptin. Is that standard? Who has or hasn't had it prior to starting?
Second, as a result of the PET scan I had for BC staging, I was diagnosed with a tumor in my thyroid. The surgery for that will be in the fall, after the Taxol is done, but during the Herceptin-only part of my chemo. I'm a bit worried about how it will be to have surgery while on the Herceptin. Has anyone had surgery (any sort, including reconstruction) while on Herceptin? If anyone has any thoughts or experience with this, I would welcome any information.
I'm a bit concerned in general about the Herceptin because I have high blood pressure and a family history with lots of heart problems. The MO says don't worry, the chances of problems are very low, but, naturally, I worry anyway.
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I had a MUGA scan before starting my chemo (TCH) and have had one every three months since then. They do the first one so they have a baseline to compare later ones to so they can see if there's been any changes. On mine the changes have been extremely minimal. My MO has been watching very carefully since I do have a family history of heart issues and I was having high blood pressure readings over the few months preceding my mastectomy (high stress time, you think?). My blood pressure has been staying in the normal ranges all through chemo and the Herceptin (which I'm still on).
I haven't had any sort of surgery while on Herceptin but I wouldn't hesitate if it were needed because my experience with Herceptin has been very good. I have had no adverse side effects from it at all (unlike my chemo experience).
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I had my mastectomy and radiation while still on the herceptin, I too had no problem with herceptin compared to the other chemo's, good luck to all who are going through their treatment now, it is a rough road, but the other side is so worth it!!
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Perjeta is a 'moloclonal antibody' that binds to HER2 and supposedly slows tumor growth. Received FDA approval in June 2012 for HER2+ and metastatic BC. Clinical name is Pertuzumab. I've seen several posts combining it w/herceptin - I think on a stage IV thread.
Marcie - I'm also ER/PR neg & HER2+ so I guess my MO is throwing the kitchen sink at this recurrance.
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Minus, so sorry you have to go through this again but sounds like you have a MO who is on top of the current protocols. This is a great sight for support, it helped me when I needed a lift, hope you are finding strength here too. Good luck and hope this is a good week for you
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PamelaKay,
I had two oral surgeries and my second mastectomy while on herceptin (all was benign in the breast).
On the advice of my oncologist, the surgeries were done one week after my herceptin dose and two weeks before my next one (three week dosage cycle).
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Regarding surgery while on Herceptin: I had two lumpectomies and unilateral mastectomy before beginning TCH, but I had the exchange surgery (silicone implant with a lift on the healthy breast) during Herceptin. No problems.
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I had 3 muga scans total since I started treatment. Saturday I went for an echocardiogram (my request to MO instead of another muga). Echo was a walk in the park compared to muga. I asked the technician and echo gives a definitive EF reading too. Anyone on the longer herceptin regimen experiencing muscle aches? I am still getting muscle pain, especially after walking or standing for an extended time.
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I'm happy to find this thread, as I've been reading through many others, scanning for hormone-negative and HER-positive women! I was just diagnosed in February. I've done 3 rounds of A/C with one round to go, and then I'll get 4 rounds of taxotere. After that, a double mastectomy and then radiation. It's all very scary, especially because my first symptom was a large "lump" of matted lymph nodes that I found under my right armpit in early January. By the time I started treatment, I had a large solid tumour under the nipple in the right breast (large in comparison to my very small breast size:) with a lot of skin involvement, a hard ridge around the nipple and pointy micro-tumours with skin redness that could be felt scattered around the outside of the breast tissue. The cancer had also spread to my left underarm, which they consider very unusual. The worst part was the time before treatment, just from the anxiety of things continuing to grow. Being in treatment isn't a picnic either. I'm having a very hard time with the A/C treatment because I have an underlying bowel disease (ulcerative colitis) and deal with nausea even without cancer and chemo!
But I'm getting by, day by day, and round by round, and keep top of my mind that I will do anything in my power to beat this because I have a husband and 9-year-old son that I love more than words can express. It helps me to know that there are others going through the same thing, though my heart aches for anyone has to endure it. Thank you to whoever started this thread and brought us together.0 -
Hello ladies! I had an echo prior to starting treatment and my onco said none needed till July as my echo results were very good so even a 10% drop would still be a go for hercepton at this point. Took 3 calls to get THAT answer! So I won't worry about my heart till I see him June 19th. On the other hand....no mention of perjeta for me.....why not I wonder? ....I'm on hercepton for life.
My chemo was originally taxol which I promptly had an allergic reaction to, then switched to Abraxine at 172mg for 3 weeks off one week, after 6 infusions he lowered it by 20% as the side effects were horrible. Hercepton is every 3rd week. I notice joint pain increases when i have it. I've just finished chemo last week and read on stage IV forum that most of the ladies have perjeta as well as hercepton , so my question is ....how come I'm not on perjeta it as well?? Is he saving it for a progression?
I had my last liver, torso scan in April which showed improvement in my liver (he wrote my pers. doc that if there was no improvement my survival was measured in months)........was NOT happy to read that! My mets went from 8 lesions (largest approx 2cm) in November to Liver FULL of cancer in Jan scan....so I'm still here, chemo worked but I still have mets. I worried about progression without chemo.....just on hercepton till my date with onco June 19th...how fast does this crap grow?
Xoxox Jo0 -
Jo: I'd definitely ask about the Perjeta. Maybe it can't be combined with Abraxane? I'm doing TCH + perjeta. Don't know yet if Perjeta will stay part of the continuing mix w/Herceptin for a year once I finish the tax & carbo. Sorry you have to wait until mid June for an MO appointment.
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Thanks Minus two, I'll be talking to him in June. Unless there's an emerg he won't see me sooner. I've been reading up a bit, apparently it was approved last month in Canada.
But, I'm confused about me having having chemo & hercepton first....they mentioned that it works as a first treatment before any chemo so I not sure if I'm reading it correctly and if I qualify. Is this your first combo treatment, have you been on chemo before?
Thanks, Jo0 -
Jo: It's my first chemo. I haven't really seen Perjeta mentioned here except on Stage IV threads. The drug info sheet the MO gave me said it's indicated in combination with Herceptin and Taxotere for treatment of patients w/ HER2 positive metastatic BC. FDA says must express HER2+ for initiation. Supposedly a targeted therapy of the monoclonal antibody type. It binds to a different area of HER2 than Herceptin so when they're combined, a more complete blockage of the HER2 signaling occurs.
I couldn't see anything about first time onlym but I see my MO the end of May so I'll be sure to ask.
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Thanks so much MinusToe! Will keep watching. Xoxo Jo,,
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Hi All,
Fairly new here... just finished my 2nd AC/Neulasta. Fatigue is my biggest issue now. I also have fibromyalgia, so its hard to tell what SE are related to what.
Just wanted to check in and add myself to the roll call.
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Hi ladies! I am new to the boards. I have had four rounds of AC chemo, and BMX, and now on my third round of 12 Taxol. So far the Taxol is a breeze compared to AC. I did make a stupid mistake recently though. I went to bed with a hot pack on my chest (to help relax) and because I still have no nerves or feeling near the insision, I didnt realize that the pack was hotter than it should be. Woke up with severe second degree burning. Sucks. So any prayers would be appreciated!!
Thanks girls!
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NicNak Welcome to the board... And OUCH... Praying...
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NicNac, I've made a few really dumb mistakes too. We learn as we go...
Hi 6Cats, I've just started here too. Nice to see a friend from the April Chemo group.
I'm still in shock from finding out I will be having a 7 to 8 hour chemo treatment when I switch to the Taxol/Herceptin at the end of June, plus Herceptin only in the off weeks. So one week it is T/H, the next H only, then back to T/H, and so on for 4 treatments total, then switching to Herceptin only every 3 weeks for the rest of the year.
The nurses say that they sometimes use frozen peas to help with nails, but because the taxol infusion takes something like 4 hours to do, they said it's not practical. Is it common to have the Taxol take so long to infuse? I know I have seen others mention that they iced during Taxol. Any hints on how to keep hands cold for so long? Maybe just the occasional icing throughout the infusion would do it? Would I also have to ice my toes as well? I REALLY don't want to lose my nails. It's my worst fear of the chemo.
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Pamela,
Looks like we are on a similar treatment plan. I started 12/6/12. My T/H treatment takes about 2.5-3 hours. I had trouble keeping ice on my hands and feet. The best I found were ice packs that I would hold. I also get acupuncture which has helped tremendously, but could not keep up with the progression of the neuropathy. The neuropathy got to Grade III after 8 weeks of Taxol. They suspended my treatment on the Taxol for 4 weeks. With acupuncture my hands and tongue are pretty much back to normal, but I still I'm fighting to get feeling back in my feet. I see the onc today to see if I will continue. I vote for not continuing. 5 months of adjunctive therapy has got to be enough. I will let you know what the doctor says after I see him.0 -
PamelaKay... Taxol+Herceptin takes 7 hours... While msjudith takes 3 hours... I wonder why the difference?
msjudith -- did your first infusion take a lot longer? I know they told me my hubby had to be there because of the risk of allergic reaction.
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The nurse said something like 2+ hours on premeds, then the Taxol takes 4-5 hours (longer the first time), 1 1/2 on Herceptin (actually, I don't remember for certain which is first, the taxol or herceptin; will have to ask for more details next time). Eight hours the first time, possibly droping to 7 for the rest.
They didn't say anything about having someone there for me during the treatment. 6Cats, did they want your DH to be there the whole time, or just for drop off and pick up?
I saw somewhere that keeping sun off your nails during herceptin helps with nail loss. The suggestion was for dark nail polish, but I hate wearing nail polish, so I'm wondering about gloves or something similar. Anyone have experience on improving nail condition with keeping the sun off?
I've also seen mentioned that some take Gabapentin for the neuropathy. Anyone here do that? What results?
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