ER-, PR-, Her2+ Roll call
Comments
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Hi Brightness. My oncologist explained that studies have shown Herceptin to be most effective when used in combination with a taxane. For me, the taxol/herceptin treatment was quite bearable. I think the steroids they administer help a lot although they kept me awake 24-48 hours after each infusion. I just got used to doing all my housework during that time because toward the end of treatment especially, I tended to crash on the third day after infusion.
I lost my hair, but it's all back now, and I had no taxol induced neuropathy because I used cryomits and booties during the taxol infusions. Some ladies also manage to keep most of their hair using cryocaps, but for me it was more important to keep sensitivity in my fingers and the discomfort of freezing my hands and feet was quite enough.
Many women wish they could have benefited from this treatment when they were first diagnosed with HER2 because recurrence rates for this type of cancer are relatively high, even when it is detected early. I consider myself very fortunate to have received it.
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checking in. Had my last Herceptin treatment in feburary 201. Closing in on the last of those every 3 month follow-ups, alternating between the MO and RO.
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Hello again ladies. Pipandor, you hit on the reason for my uncertainty. The chance of recurrence confuses me. My MO from the teaching hospital where I had my surgery said the difference between doing chemo/herceptin/radiation vs just radiation is 98% with it, 94% without. Those are good odds either way, but I don't feel like I'm a lucky person in many ways. She wouldn't tell me what she thinks I should do or what she would suggest if I was her family member. My local MO called yesterday. She said she thinks I should do the chemo/herceptin because of my anxiety. She said the first MOs numbers for recurrence are correct, but pointed out how important family is to me and said her concern is that if it did come back later as a stage 4 with mets somewhere else, I'd blame myself. She's right.
I don't want to face the SEs. She said I'd most likely lose my hair, but she didn't think neuropathy would be a problem for me. She said I'd probably gain weight temporarily due to the steroids they give prior to treatment and I'd probably have nausea, although not so bad as to be intolerable. She even said I could drive myself to and from treatments. Still, I'm so afraid. I don't want this to be my reality. I'm really scared
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Hi Brightness. I think I know how you feel. I was terrified of chemo too, but looking back, I'm happy to have done everything that was possible. As soon as I got past the first infusion and blood draws, I realized I could do it, and that as chemo goes, 12 weekly infusions of taxol isn't too bad.
For me, the hardest was the last four months of Herceptin because I developed this insane itch on my arm that nothing except ice packs relieved. Sleeping and working with ice packs strapped to my arm, I became quite tired. It was worst right after infusion and completely gone a month after the last infusion. I wouldn't worry about it because I've seen only a couple of long time Herceptin users with a similar reaction in these forums and my oncologist had never seen it.
Almost every day during the year of treatment, I walked on this really nice trail in the woods. At first, I did it because the nurses told me it would help me get through chemo. I kept on doing it because it relieved my anxiety and helped keep the pounds off. I did gain 10 pounds during treatment, and try as I might, I haven't been able to shed them, but hey, I'm 55 and menopaused, so I just went out and got some pants that fit more comfortably at the waist 😀
You might find this hard to believe Brightness, but looking back on it, some positive things come to mind. I've become much better at recognizing and avoiding negative situations and people, I take better care of myself and I live more in the present. Before you know it, you'll be there too.
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p.s. Brightness, I forgot to mention, I had no nausea at all during treatment and many people don't get nausea from Taxol.
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I had the full treatment - Taxotere - TCHP and then Herceptin for the rest of a year. I never had any nausea. I did have diarrhea and lost 60 lbs. Well, 10 would have been good, but.... I too went and bought a couple new pair of pants. I didn't cold cap so I did lose my hair. Back thicker than ever. I did ice my hands and feet with frozen peas, but didn't ice my feet the very first time so I have some neuropathy in my feet.
I drove myself to every chemo treatment, and for that matter to every rads treatment. Yes, I had significant fatigue, but my MO was fairly adamant that I do the Herceptin, and they wouldn't do that w/o taxotere or taxol. Good luck,.
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MinusTwo nice to see you back on the forum. The situation looks horrible in Houston and I hope you're OK.
I don't understand the first part of your profile and I'm wondering what your first diagnosis and treatment were (in 2011).
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Thanks Pip - I was one of the fortunate ones. I never got water in my house & I never lost power.
I was diagnosed with DCIS in 2011. Because of my history of dense breasts, I choose a BMX, TEs & eventual implants. The MO & BS & PS were in agreement. The surgeon got clean margins and the SNB showed clear - 3 on each side. So no need for rads. After 7 months, I had my TEs exchanged. As you may know, they don't test for HER2 with DCIS & I was ER/PR negative so I was done.
Unfortunately there was apparently a micro-met that escaped. I found a lump under my collar bone 2 years after original diagnosis & BMX. Both the BS and the MO were shocked - and I'd trust either of them with my life (well I did actually). Unfortunately that biopsy showed this recurrence was IDC. The tumor board decided to call it a 'recurrence' and not mets. Because I was then HER2+, I had TCHP chemo first, then ALND surgery, then because there there had not been a pCR from the original chemo I had AC chemo after surgery. Then rads. Then Herceptin for the rest of the year. My brilliant surgeon managed to skirt the edge of the implant so I didn't have to lose that.
So those of you who don't understand when I insist on saying NED and not 'cured' can see why. I hope I'm done, but you never know.
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MinusTwo, glad your home was spared by the flood. We had bad flooding this spring up here in Gatineau, Quebec (800 families were evacuated from their homes) but nothing compared to Houston.
Thanks for explaining everything you've been through. I find it enlightening and I think Brightness might too.
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Thank you for sharing your experiences. I've decided to do the taxol, herceptin and radiation. I'm scheduled for a port placement because the PT said I shouldn't get stuck on the arm with the cording, which could develop into lymphedema if I'm not careful.
I'm looking into cold capping to help save my hair. I feel like so much has been taken from me (selfish when compared to so many others I know, but this is the only place I can share every feeling) that I'd at least like to keep my hair if possible. Then again, it's expensive and a lot of work so I'm still on the fence.
I'm scared, but it's happening so I'm trying to start looking for the blessings within it
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Brightness, I know it's scarey but it could make a big difference, and at the very least you will know you've done everything you can. Thinking about the vast majority of people in the world who don't have these options always helped me keep things in perspective and I often found comfort, information and inspiration on this great forum. You might also like the articles and updates on research that breastcancer.org posts on FB.
I was a bit surprised that your oncologist said you probably would not experience neuropathy. Most people receiving taxanes do to some degree, and if the loss of sensation usually returns after treatment, sometimes it doesn't. I met one lady, who three years after treatment, still can't sew and perform several tasks because of it.
My oncologist, a tough lady who didn't seem very concerned about most side effects (such as a nasty bout of foliculitis I had) insisted that I tell her the minute I experienced neuropathy and said she would consider adjusting dosage if I did. Where I was treated, cryomits and booties were supplied to patients who wanted them. I didn't lose sensation in my hands and feet but after chemo and steroids (not during) I had pretty sore feet for about four months. All better now.
With a little planning, I was able to keep on doing most things, especially the things I liked. I celebrated the end of chemo by taking a little trip with my husband before radiation started, and the end of Herceptin by taking a holiday with my daughter. Having fun stuff to look forward to helped. Learning how to meditate also helped a lot.
I wore a wig a couple of times but found it inconfortable so I got pretty creative with the head coverings. Even my humourless oncologist once chuckled and complimented me about them. My new hair is positively wild and also a great source of entertainment for my family.
Your fear and anxiety might lessen when treatment starts. You might enjoy good times even more now and blow off all the other stuff more easily. It happens a lot, and it stays with you beyond treatment.
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I don't do FB, but the mods do post all the research articles on this site. Link below. I made it one of my favorites.
https://community.breastcancer.org/forum/73/topics...
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Hi Brightness. My doctors all agreed with the others here about Herceptin being something of a wonder drug: I think you are making the right choice!
I wanted to add that with my own dose-dense AC-THP: Doxorubicin caused hair loss, and then during Taxol I lost my facial hair (eyebrows, lashes, cheek fuzz, and *ugh* nostril hair). Thank heavens for makeup and Kleenex!
My Taxol infusions also made me start developing neuropathy in my fingertips and toes. When I mentioned this to the doctor, he pulled me off Taxol two doses early... so I had 14 of my 16 infusions (and I did receive the full year of Herceptin). It took a few months for the neuropathy to disappear, I think; now that I'm one year out, I don't even remember when it went away. So definitely keep on top of those side effects, and bring it up with your onc if you start noticing anything.
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Neuropathy really scares me. And losing my brows and lashes, oh no. I need to believe I'll be lucky and won't have SE issues.
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Brightness - I was resigned to loosing my hair - but NOT my brows. I used Latisse on my brows and upper lashes. It's prescription only but my MO and my ophthalmologist were OK with me using it. I used one drop brushed on brows & lashes every day the entire time I was getting Taxotere. And adriamycin too for that matter. The result was good. Although my brows thinned, I never lost enough hair to even bother with make up. Same with lashes - thinned but no total loss.
And elise is correct - My Mo also talked to me about neuropathy and gave me the choice to cut back on Taxotere for the 5th & 6th infusions. I've heard from other women who have skipped the 6th & last infusion.
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Minus Two, I remember reading someone else was told by her MO not to use latisse during chemo. It was contraindicated. Maybe it depends on which chemo meds one uses? If I had to lose either hair or brows and lashes, I also would choose to keep brows and lashes and lose the hair. Neither would be my preference. It's hard enough facing the physical challenges of chemo, but I'd at least like to look nice.
As far as neuropathy, I'm not sure why my MO said it shouldn't be an issue for me, but that's a significant side effect. I like to be active and I walk a lot. I was planning to use daily walks for physical as well as mental health and well being. I don't want to be falling out on a trail somewhere.
I actually asked my MO why they recommend 12 weeks of treatment. I've read several people stop early due to SEs. She said it was typical protocol and she wouldn't want me to get the toxicity of treatment without the benefit, but at what point is it enough benefit? What happens to other people who stop early due to SEs? Is it a case of some is better than none? The more I learn, the more it seems I get confused...
I'm sorry for being so negative and frustrated. I just want this to go away
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Since I am ER/PR- and Her2+, I'll share my story here hoping after couple of years I'll be able to come while cancer free and check in back againlike the other amazing ladies, I recently was diagnosed with breast cancer, just before I turned 30 , I had the worst birthday ever for sure. I have a 5 years old daughter , They found that I have (ATM Gene) they say it raises the percentage of getting cancer in my age by 10% , my oncologist put me on neoadjuvent treatment, I did yesterday last round of AC and will start Taxol and herception and Parjeta in two weeks. Mine is multicentric Too so I felt very bad about it because that it is one of the worst types but there is still hope, and it pushes me to go on when I read all other positive stories. And it will help also if the ladies who beat it share weather they changed the diet they following, I cut sugar , lower carbs, no dairy and red meat now and added more veggies and fruits. I hope for the best , but I know it will be long hard trip.
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Oh Maryan, my heart goes out to you. I've got young grandchildren, but they have a wonderful, healthy mother. Still, they are the people I think of when I know I have to fight this.I can't imagine looking at your child knowing you are facing this. I will put you in my prayers for a full recovery.
I'm interested in how to be my healthiest self as well. I've been drinking tons of water and eating healthier in anticipation of the weight I'm told I'll most likely gain due to steroids.
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Brightness456, thank you so much for the sweet wishes, I am fighting for my little daughter and I'm trying my best to keep on healthy diet and organic foods , I used to not care at all but now I'm reading all ingredients before buying anything. I'm hoping for the best and after all it is all in God's will, never expected this but I'll keep going to see what the future has for me
. I wish you and all the ladies the best health and fast cure and recovery . Much love to all0 -
As a HER2+, of course I got Herceptin. As "advertised," I also got lots of joint pain. Later, in the course of doing lots of body scans, my docs determined that I had osteoarthritis (which I'd been telling them for years but they ignored). Most of us know that Herceptin tends to cause join pain ... while on it, I crept up and down my stairs more slowly then my 90+ year old great aunt!! My osteoarthritis seems to be SO much better since I am off the Herceptin. Wondering if this is coincidence ... or anyone else out there that had osteoarthritis prior to starting Herceptin? Did you find that the Herceptin made it worse? Thanks.
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Lumpie: I was diagnosed with osteoarthritis in my right hand a few years ago. I have been on herceptin for 11 months now and my osteoarthiritis has gotten worse in the past few months. Also, I have a lot of stiffness/weakness in my knees and legs -- I assume from the herceptin. I have two more herceptin infusions so I'm anxious to see if joint and (muscle) stiffness/weakness go away when I finish.
A week after my last herceptin infusion (#10) I started to feel achy, kind of flu-like. I wonder if it's a cumulative effect of the herceptin.
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I would describe the side effects of Herceptin exactly the same way: I get muscle aches in my lower legs that make me feel like I have the flu. It has gotten worse with each infusion, and I feel particularly achy after I have done a lot of exercise. I felt the same way when I took Perjeta, but rebounded when Perjeta was dropped from my protocol.
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BellasMomToo and stephincanada thanks for your replies. My schedule makes it tough but I am continuing to research any studies done on the links between Herceptin and Osteoarthritis, bearing in mind that cancer can kill us while osteoarthritis generally won't. I came across this:
http://factmed.com/report-HERCEPTIN-causing-OSTEOA...
which indicates that Herceptin is suspected to cause or exacerbate osteoarthritis. One has to be careful about what you find on the internet, but it asserts that "Between January 2004 and October 2012, 282 individuals taking HERCEPTIN reported OSTEOARTHRITIS to the FDA" which seems fairly objective. Maybe as we learn more, we will figure out ways to minimize the side effects.
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This is my first post here. I’m 40 and was diagnosed with Stage IV er/pr negative HER2+ breast cancer at the end of July. I’m doing what looks like the standard taxol/herceptin/perjeta every three weeks for 6 cycles then herceptin/perjeta every three weeks indefinitely. I’m getting ready for my second THP on Wednesday.
Right now I’m most wondering what I might expect from HP alone, since that will be so long term. I’m interested to hear anyone’s experiences with that
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Hello, Pipandor. Have you got any personal tips on how to avoid neuropathy when on Taxol ?
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Dear Henrietta405 and FireSally,
Welcome to the community. We hope that you will find support and information here. Please let us know if there is anything we can do to help you to navigate this site, find ways to connect and the answers that you are searching for. Keep us posted. The Mods
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I think the effects of being on Herceptin can be cumulative. My last infusion knocked me down. I felt pretty wretched for 6 to 8 weeks. It also took me a long time to recover in general. We can only hope that it did its job.
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I agree with Exerciseguru that the side effects of Herceptin are cumulative. By the end of treatment, I had terrible muscle ache and fatigue after exercise. I also had a constant, burning pain in my fingertips. My last dose was six weeks ago, and I am feeling much better. Still have the drippy nose, though!
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Henrietta405 I was diagnosed stage four two years ago in July. I am two years ahead of you and want to tell you the H&P is very doable. Every three weeks I'm grateful to review these life saving antibodies. It's hard to accept that you will be on this forever. It will get easier as time goes on. I pray that you will stay on this first line treatment like many others. I too hope to be like some stage 4 on Herceptin alone for 20+years!
Once you are finished the "chemo" part you will feel stronger and stronger, your hair will grow and you will achieve a new normal. Taxotere causes neuropathy so you should ice your hands and soak your feet in cold water during that infusion...chew ice too. I did 8 rounds of taxotere with very little long term side effects but you have to ice...hugs to you! You can find this
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Thank you for the nice welcomes, and thanks for your encouraging words, bstein! My doctor and nurse didn’t like that I was already having hand and finger tingling, so I will definitely ice from here on out. I have my second treatment tomorrow. I hope it is generally like the last or not too much worse.
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