ER-, PR-, Her2+ Roll call
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Hello Ladies, I am new to this thread. I was looking for other ladies doing Herception. I finshed my Taxol treatments on Dec. 28th, 2017 and now on to just Herception every 3 weeks. Was wondering if any of you are just on Herception and what SE you all are having. I still have SE from the chemo.. neuropathy in my finger tips, still fatigued, so can't tell what the Herception might be causing. Would love to hear from others. Thank you and hang in there where ever you are in this journey.
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Hi 2brandy. I finished Herceptin a year ago. The side effects I experienced were a perpetually runny nose (although that may be because Taxol makes you lose all the hair in your nose), lots of cramping (that's a lot better now) and a very bad itch on one of my arms that started about 4 months before the end of treatment. The only thing that relieved it was ice, and I tried everything. Three weeks after the last infusion it was gone. Hang in there. With a little exercise, a good diet and plenty of sleep, the post chemo fatigue usually gets better too.
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Hi again, Lilneenz . Hope all is going well for you! I'm still getting those one-sided headaches, but I've been able to control them via NSAIDs (mostly just Advil).
I posted the headache question on a different forum, and was able to get more responses from a different group of people.
Please feel free to add to the discussion; especially since your symptoms are different from mine! I've already had responses with four radically different possibilities to explore!
"Topic: One-sided Headaches AFTER completing treatments", posted in "Forum: Not Diagnosed With a Recurrence or Metastases but Concerned"
https://community.breastcancer.org/forum/105/topic...
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Hi 2brandy. I also had neuropathy and fatigue from taxol. The neuropathy was completely gone within a few months after stopping chemo (while still on Herceptin). The fatigue got better, but never completely went away for me until after completing Herceptin. And aside from some weight gain, I didn't really have any other SEs.
But that's just me. Your mileage may vary.
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Wow!! This is from 2 days ago we are a rare subtype only 5% in the U.S.
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Thanks for sharing Lily. No wonder this thread gets so little activity -- we are fewer in numbers.
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hi, I am brand new and bewildered. Trying to cope with this diagnosis, I am simultaneously navigating the complex world of the healthcare system. I am finding that facilities and doctors do not help you choose your best medical options based on your health insurance. For instance, my cancer specialist facility in Florida has ordered my meds through their in-house pharmacy. I did not know that I had the option to purchase or obtain my chemo meds (carboplatin and taxotere) and adjuvant target therapy meds (Herceptin and Perjeta) thru one of my in-network pharmacies. Due to my vulnerability and anxiety, I am finding that I don’t think as quickly; therefore, I am being blindly herded through unfamiliar territory. My therapy starts March 26th, in about nine hours, and I don’t understand the financial impact or even my doses. I feel snowballed. I am not letting this occur. I will politely demand full transparency. Just because I have cancer does not mean that I am stupid
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Dear Evergreen, I truly pray that I am able to emulate your success. I want to add a post in seven years....at my 60th birthday. I am brand new to this mess and am so angry - and feel betrayed by a body that I cherish and attend to on a daily basis. I never smoked or drank. Exercised four days a week. Ate well.....etc. etc. This is hard work and it did not pay off.
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2brandy...I have 6 treatments of Herceptin left to go but after my last 2 or 3 I seem to have developed a constant headache, neck ache, aching shoulders and extreme pain in my hip flexors and lower back in the sacrum area..I might call my Dr before my next infusion to talk about getting something for the pain. It is almost like very bad flu aches through my body..makes it hard to function
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Your welcome BELLASMOMTOO!!😊
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Hey,
Didn't post here but I'm Er/Pr-, Her2+. Had neoadjuvant chemo, 3 taxotere + herceptin which worked well to shrink the tumor but I had a recurrence when I got switched to CEF. I had to get surgery earlier and pathology was not good; 25/26 lymph nodes affected. I am on chemo again, but 12 taxols with herceptin and perjeta. Things are a bit better now. No sign of recurrence for now
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Just checking in. I just had my annual oncologist visit. It has been ten years since I finished treatment (4 AC, one year of herceptin).
I am still NED and hope to remain that way.
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so I'm due for a brain MRI - scared beyond belief, can hardly cope. Had an eye test two days ago which was all good and the optician assured me if there were any swelling on the brain it would have shown - positive I hope ??? Then it got me to thinking about skull mets ?? Lordy :
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Hi lil - I’m so sorry you are in this situation. Focus on what your optometrist has said, breathe and get through the MRI. Whatever happens we will be here to support you. With love and support xx
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Lilneenz, I just went through the same thing!!!
My MRI came up clear!!! but they still haven't gotten to the root cause yet. I'm still suffering from alternating dizzy spells and lopsided headaches (top-right side of my head). Bleh.
I asked my question elsewhere on these fora (forums?) and received responses covering migraines to shingles. None of their suggestions panned out yet.
"Topic: One-sided Headaches AFTER completing treatments", posted in "Forum: Not Diagnosed With a Recurrence or Metastases but Concerned"
https://community.breastcancer.org/forum/105/topic...
Please do keep us posted!!
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Im hormone negative and HER2+. We are definitely a very small select group. Last Friday, I completed Round 3 TCHP. Officially I have completed one half of my chemo treatments. I still have 3 more to go Plus every 3 weeks the h&p for a year. But at least there is some light at the end of this tunnel. My side effects have been minimal. The most difficult one for me is the metallic taste of food. Several of the ladies had suggested some very Bland foods and it helps some. I'm thankful I haven't had to deal with the big D, constipation, nausea and vomiting. I have been pain-free. This morning I did wake up with a rash from my fingertips to my elbows and my toenails are starting to look raggedy. All my lotions and body washes are hypoallergenic . I don't know if it's too late to start icing my hands and feet. I'm going to a rehab conference in Utah in 10 days. I'm really looking forward to just getting away , attend my conference and get some hiking in. I'm hoping my side effects will remain minimal. With chemo it's hard to know from day-to-day what to expect.
Lilneenz- so glad your MRI came out clear. Sorry you're still suffering from headaches and dizzy spells. Sucks. I hope your physician can figure out what's causing it or how to resolve it
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Since my last chemo....4th out of 6...I have experienced weakness and shortness of breath when walking. I'm terrified it could be the Herceptin damaging my heart. I have an echocardiogram scheduled Tuesday, April 10. If I do have heart damage from Herceptin, does anyone know what usual next step is? Any thoughts
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Hi all!
Newly diagnosed unfortunately not new to cancer or chemo. I'm a 7.5 year Non Hodgkin's Lymphoma survivor after receiving 6 rounds of RCHOP. Due to my previous exposure to chemo, I'm not sure exactly what chemo I will receive. I did decide to do a lumpectomy rather quickly. (Surgery was less than 2 weeks after diagnosis) I just wanted the cancer out. I'm glad I did no lymphnode involvement thank goodness.
I see the oncologist this week and I'm trying to find any information on the alternative regimens for ER-/PR- HER2+ I've had close to the lifetime allowed for the red devil so I know he will be avoiding it.
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CENO - heart damage from Herceptin is normally reversible. So the next step might be to skip a dose & check again in 6 weeks. It's the heart damage from Adriamycin that is usually permanent. Still, my MO did an Echo several times during my course of treatment and would have stopped my Herceptin if it had gotten too bad.
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Thank you for info minustwo. Sure hope my echo will be ok Tuesday. I appreciate your time in answering
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Please do let us know. Mine went down w/Herceptin but not dangerously.
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Hi Cenok2017,
Good luck with your echo this week. If your LVEF decreases significantly, your cardiologist will likely put you on an ACE inhibitor and beta blocker to support heart function. This happened to me, and I will remain on these meds for a full year after the completion of Herceptin therapy. I was also told to engage in vigorous exercise to help my heart. I have done so, and my LVEF rebounded to normal. I did not have to pause Herceptin.
I read that neo-adjuvant chemo has not shrunk your tumor, and wonder if you are receiving Perjeta as well as Herceptin. The APHINITY trial results suggest that those with affected nodes and hormone receptor negative tumors would benefit from his additional targeted therapy.
Good luck with everything. You have a lot of unknowns to deal with, and I am sure this uncertainty only adds to what is already a very stressful ordeal.
Stephanie
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Stephanie,
Thanks for your reply. Yes, I am on perjeta. ...TCHP. Just so discouraged about tumor not shrinking. I have another question that I must ask my MO. I have just met her because she has been out on maternity leave. Another stressful ordeal for me so I have been seeing her PA and Oncology nurse. There was a doctor covering for her but I still feel stressed about not seeing the same MO all along.
The question is that my first biopsy was ER-/PR-HER2+. After going to the actual cancer center, the biopsy states ER+20% PR+ a very low percent...will need to look it up to see what % and HER2+. Does that mean I am actually ER+/PR+ HER2+? Although I have faith in the cancer center I'm going to, I feel like I'm still confused and not asking the right questions.
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duffyzmom the standard treatment should be taxotere with Herceptin and Perjeta (some places do TCHP or TCH (Carboplatin)for early stage disease but Perjeta is given as first line more often around the world! Welcome but stupid that you should face cancer again!
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Thanks - I see oncologist on Thursday so I'm just making sure I have enough knowledge to ask the right questions.
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echocardiogram came back ok compared to baseline! Thanks for your concern
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Good news Ceno - thanks for letting us know.
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Ceno - Great news on the echocardiogram! During chemo, I became fatigued and short of breath due to anemia. I'm sure they do complete blood counts on you, but it's a thought. (I stubbornly refused a transfusion, and my counts quickly returned to normal when I finished chemo.)
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Headed in for my chemo education today. Plan is 6 rounds of TCH. I guess no Perjeta because I'm just under the line 1.9cm. I guess 2 cm is the cutoff for the Perjeta. I'm hoping I'll get the neulasta patch thingy. Last time I really hated going back the following day just for an injection. Fingers crossed insurance will agree.
My MUGA is tomorrow. I already take a beta blocker so I'm hoping that will help protect my heart during this year of treatment. Anyone else with previous heart issues? Mine is just a minor "extra" heart beat. I only take a half a tablet so barely any.
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Jill--I also had a lumpectomy---my doctors all assured me that as long as you have good, clear borders the statistics are the same as with a mastectomy. I've researched online and seen the same. Looks like Evergreen's lumpectomy has worked for her, too.
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