ER-, PR-, Her2+ Roll call
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Hello - I am ER/PR- HER2+. Diagnosed in April of this year. I have had port placement and a lumpectomy/SNB with 8 nodes clean and clean surgical margins. I start taxol and Herceptin in two weeks. It’s good to see everyone in here. Very positive for those of us just starting
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DogMomRunner, I had the same diagnosis as you 2006.
Chemo is very effective for us and herceptin is a life saver.
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I also had a similar diagnosis except that one margin up against the chest had a very small amount of cancerous cells. I decided against resection and underwent the same treatment as you. I am three years out from surgery and so far, so good.
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Thanks Sassa and Pipandor! Tomorrow I go for my chemo class and find out about the financial end if treatment. My insurance is ok but not great so we shall see how much of the Herceptin they will pay for and how much will be out of my pocket. I am also looking at shorter haircuts before I shave it down. Sadly my hair is really curly and going short means I will look like the south end of a north bound poodle.
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DogMom, if I had to do it again, I would get a buzz cut when the hair starts coming out in clumps and let the rest fall out, but I wouldn't shave it. I had a nasty bout of folliculitis not long after shaving and think it might have been related because chemo can weaken the immune system. My hair was slow to grow back and initially much curlier than usual, and I recall a chemo nurse saying that isn't unusual, so you might find you look more like a poodle after chemo than before 😀 Now my hair is long and wavy again, and a happy reminder of the body's ability to heal.
P.s. If you are concerned with the neuropathy cause by Taxol (loss of sensation in hands and feet), I suggest you wear cryomits and booties starting ten minutes before the infusion and ending ten minutes after. You'll find the results of a recent study on the protective effects of cryotherapy in an article on this site. It certainly worked for me.
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when I started losing clumps of hair I had my hair scissor cut to my scalp. When my hair started growing back post-chemo it came back with the three C's crazy chemo curl. My hair had always been stick straight. I had already been warned on these threads about the crazy chemo curls.
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jo6359----it is funny that we grow crazy chemo curl when the hair grows but when I cut it,the curl was gone and my hair came back to its usual state.
Sassa--yes I agree with you, herceptin is very effective and I wish I was able to tolerate it.
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Thanks Pipandor! My first Taxol/Herceptin dose will be on June 5th. I have ordered 2 large and 2 small Cryomax freezer packs for my feet and hands. I was going to go with the booties but they don't stay cold as long. I am contemplating a wig just so I don't have to answer endless questions at work
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dogmomrunner- most of the time I wore beanie but there were a few occasions I wore a wig. I worked home health so my clients didn't care but if I attended staff meetings I would wear my wig. I remember losing one of my wigs jogging on the Rickenbacker Causeway. A strong wind came and my wig became Airborne. It was both sad and funny. Beanies worked for me because it is so bloody hot here in Miami. I didn't ice my hands and feet. Between treatment 3 and 4 I did develop mild peripheral neuropathy in the toes of both feet. It has almost completely diminished except for two or three toes on my left foot. If you can tolerate the cold, go for it.
JanetMara- I haven't had my hair cut yet. I wanted it to grow a little longer before shaping it. Hopefully I will be as fortunate as you and my hair will become straight again.
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My Wife ( 47 year old) has been diagnosed just few days back with Stage 3, grade 3 IDC on left breast. Today the lab result came back as ER: negative, PR: Negative, Her2: Positive 3+. Size of the tumor is 5.9 cm. Based on my limited understanding and research what i gather is this is a big tumor ( which was kind of discouraging). So far MRI has not shown any lymyph node involvement, i guess we will know more in coming days. We are meeting our surgeon and oncologist tomorrow to go over the findings and have a treatment plan.
All the information here have been helpful. Our journey is just starting, At this stage it is really overwhelming and emotional, just trying to stay positive and hope for the best.
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Welcome Robmon. I'm sorry that your wife has been diagnosed. I had a smaller tumor (less than 2 cm), grade 3 but stage 1. No lymph node involvement seen on MRI or during surgery. My treatment is surgery first, Taxol and Herceptin with radiation and then Herceptin alone. If my tumor had been bigger it would have been chemo and targeted therapy first then surgery. Which might be the route your wife will take. There are others here that know much more than I do so hopefully they will chime in.
Jo - I figure that I will wear the wig at work and occasionally if we go out somewhere. So far it's been a big nothing because I want to find something similar to my hair. We are going shopping this weekend to see what we can find. I can understand the sad and funny.
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Robmon - I first had a double mastectomy for DCIS because I wanted it out. No other treatment. My local recurrence two years later was to a lymph node & was 5.5, and yes I had chemo first to shrink the tumor - TCHP. Then surgery. Then more chemo - AC. Then radiation. Then Herceptin for the rest of the year. Sounds like a long course, but I got through it with not too many side effects.
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Robmon,
My diagnosis was very similar to your wife's. Know that you are at a scary time because the unknowns are so overwhelming. I didn't find this site until after I'd started treatment, but I clung to the stories of women with tumors larger than mine that literally disappeared with treatment. One great piece of news: aggressive tumors generally respond the best to chemo! Because of the size of the tumor, your wife will receive two targeted therapies (Herceptin and Perjeta) plus chemotherapy--in advance of surgery. Twenty-five years ago, women with our stats did not fare well at all before these targeted therapies were developed, but now we have some of the best outcomes. So be encouraged! I know it's very overwhelming, but there is a wealth of information on this site, as well as support. On August 15th of last year, I was in your wife's shoes. There isn't a woman (or man) on this site that doesn't remember that awful feeling you're experiencing now--but we would all tell you it will get better! Feel free to PM me if there's any way I would be of help.
Wishing you the very best in the coming days,
Beesy
*Edited to spell your name correctly!
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robmon- I had surgery prior to chemo. When I went in for surgery the MRI had shown my tumor to be 1.1 cm and unfortunately during surgery it was discovered to be 2.5 cm. The reason I was given for having surgery prior to chemo was the location of the tumor. My tumor was in the chest wall. Herceptin and perjeta are the game changers now for her2-positive. I found diagnosis and waiting four treatment options to be discussed were the most frustrating and scariest time of my life. Upon the advice of many women on these threads I asked my doctor for a prescription of Xanax. I took a very small dosage for 7 days and I have never used it since. It did help me over the hump. It has been 14 months since my diagnosis and I'm doing fantastic. I worked during chemo and radiation and I exercised almost daily. Waiting is the worst part. You and your wife can do this. It won't be fun but it is doable
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Thank you dogmom, Beesy & jo6359 for kind word. As you all said my wife will be starting 6 cycle of targeted therapies (Herceptin and Perjeta) plus chemotherapy from next week and at the end of the cycle we will evaluate our surgery options. It's just lots of information to process and overwhelming. I am just concerned about side effect of the chemo, as our oncologist said hair loss and fatigue to be expected, but looks like there is also some concern about Herceptin & Perjeta having some negative impact on heart as it can be cardio toxic. So they are doing echocardiogram to get the baseline of my wife's heart condition and monitor it if it decreases during treatment.
Any further advice of what side effects you ladies might have experienced and tips to deal with it will be helpful.
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Robmon - likely your wife will have Taxotere and Carboplatin with the H&P (TCHP). Adriamycin is a chemo that also can effect the heart so it's not usually given along with Herceptin. Adriamycin (the red devil) can permanently damage the heart, but damage from Herceptin is usually temporary. I had an echo before and several echos between treatments.
I iced my hands & feet during the Taxotere infusion - and for 15 minutes before & after - so 90 minutes This helps prevent nail loss and may help limit neuropathy. In my case it worked for the nails. They have cold mitts now but I used frozen peas in zip lock bags. There's a great thread with tips to get ready for chemo. I'll find it & post.
https://community.breastcancer.org/forum/69/topics...
tips for getting through chemo
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Robmon - I had my echo last week to start Herceptin tomorrow. I will have an echo done every 3 months.
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Hi all! I haven't been on in a while and noticed we've had some new activity. While I'm sad to see new members, you are absolutely in a great place here.
I'm 6 months out now from my final Herceptin. My last two treatments were delayed, and then cancelled due to low EF per Echo. All is well! I'm still getting echos every 3 months and it has improved. Like most everyone, I started with Chemo (AC), then lumpectomy, then radiation, then Taxol and Herceptin and finally Herceptin for the rest of the year. I'm getting ready to go to my first hair appointment since I lost it in December 2017. My hair was curly before, but now my husband says if it was red, I'd look just like Annie! Crazy curly, just growing up and up! It's certainly a long road, but take it one day at a time and be the very best you can be to yourself. Before you know it, you'll be going for your first hair appointment, too. Love to all.0 -
MinusTwo, yes my wife is getting TCHP. it's 6 cycle every 3weeks so 18 weeks (4.5 month) unless there is a problem in echo or tumor not responding to treatment, then our oncologist may change the treatment. Thank yo for the tips.
mjb1018 Thanks for your input. Our oncologist said that damage from the Herceptin was reversible, so we will see how my wife responds to it. And about your hair loss did you experience complete hair loss or partial?
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Robmon19...Hair was a total loss. With the Taxol, the eyelashes, brows and nasal hair went, too. Honestly, the loss of those was harder than on my head. I never wore a wig, just beanies, and was A-OK with that. Without eyelashes and nasal hair,my eyes and nose watered all the time. My first AC treatment was 12/15. By the time I had my 2nd infusion on 12/29 my hair had just started to really come out. Did a super short buzz cut that night, and then that fell out in a few days...
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mnb- I have to agree with you. Losing my hair didn't bother me as much as losing my eyebrows, eyelashes and hair everywhere on my body. I think the metallic taste for food was the worst part. Each of us responds to treatment differently.
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Oh jo! I agree. I remember one day I actually felt like eating, got my favorite food and it tasted like pennies. I was so sad! It was either that, or everything tasted really spicy. So glad I'm back to normal now and eating healthier than I ever have.
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I did lose all my hair. I would recommend cutting it shorter now if it's long, then a short buzz cut instead of shaving when the hair starts to fall everywhere. Several people who shaved said the prickleys were awful.
My one chemo vanity was my eyelashes & brows - so I treated with Latisse every day. My MO wasn't against this but wasn't sure of the benefit either. Because it mattered to me, I spent the money. While they did thin, I never lost them entirely.
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I had my hair scissor cut when I started losing it. I never shaved my head because I was scared I would have nicks which could cause an infection . My eyebrows and eyelashes have come back and then they disappear again then they come back. Presently my eyebrows look good and my eyelashes are still sparse. I don't even care any longer. I feel fantastic and that's what I'm focusing on.
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First post, newbie. Had a Prophylactic Double Mastectomy because Genetic testing showed CHEK2+ gene mutation. Had surgery, both breasts removed, no nodes and 10 days later I get a call telling me that I have Triple + cancer so yes HER2 +
. I was just stunned. Mom had IDC and a Mastectomy, no chemo, she is 85 and fighting Pancreatic Cancer. Sister had IDC 12 years ago, 8 month of the Red Devil Chemo and 6 wks Radiation then Tamaxifen for 5 years. it all left her mostly bald and wears a wig. All Aunts have lost one or both breasts. I really thought I had made it under the wire in time.But it got me. Since no node were taken they can't stage me. So right now I am starting Tamaxifen. Not sure if not doing chemo is wrong but not even Mayo could tell me that there would be a significant return on y investment, so we are holding off for now. I have multiple of the health problems that muddy the plan. I am in the middle of a breast reconstruction. I have 2 fills left and then on to a swap out of taking spacers out yeah! and putting the implants in under the muscle in Sept. That will make me happy, the spacers hurt all of the tie an it will be a nice break.Anyone else out the with a story like mine? Care to share? Thanks!
Tess
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Robmon, you are in good company. Just wanted to share a link about what to eat: https://www.ucsfhealth.org/education/diet_for_canc...
Add toast to this:
Suggested foods:
- Cream of wheat, oatmeal and plain rice and corn cereals
- Canned fruits, nectars and applesauce
- White rice, pasta and potatoes without skin
- Sandwiches on white bread
- Soups without cream
- Cheese and crackers, graham crackers and peanut butter
- Eggs
- Jell-O and popsicles
- Soda and herbal tea
- Nutritional drinks like Ensure, Resource, Sustacal, Pediasure and Boost
I lost my appetite on TCHP. My husband encouraged me to eat, and I liked toast and Jello. It is important to try and eat to keep your platelets up. I have read that Pomegranite juice is good too. Good husbands are such blessings to us, help around the house and give her lots of hugs when her hair falls out. It grows back, but that moment, I cried and cried, even though I knew that. Buy a wig and have fun, get a pink one, and I know you will remind her how beautiful she is. I read a book called "Uplift" and found it to be very helpful.I found this quote on here when I first found this site, and I saved it. "I will never be grateful for cancer. But I am thankful for the lessons I have learned. For those just beginning your journey hold on. Reach out. Be tough. Be weak when needed. And know it gets better." Hugs and love, Lisa
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If there is any nausea or diarrhea, remember the BRAT diet - bananas, rice, applesauce, dry toast.
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Nothing will taste the way you remembered. The important thing is to find food or liquid supplements which you can tolerate. For almost 12 weeks I could not eat anything because the taste was so bad. I knew I could not afford to lose any weight so I would hold my nose and Chugalug boost and Gatorade. I went with low sodium Gatorade. I never gave up and every day I would try to eat oatmeal, toast, jello, etc. I never had any issues with nausea because they give you a lot of anti nausea medication with your chemo treatment. It was that horrible metallic taste which really impacted my eating. We all managed to get through it and so will you. Remember everything is doable.
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My wife had first chemo ( TCHP) last Tuesday ( June 11). It was a long day, they told us for first chemo they administer the drugs slowly to account for any adverse reaction. Both Herceptin and Perjeta was 90 minutes each which will be down to 30 minutes from 2nd chemo. But eventually everything went fine. Now just waiting for next chemo.
My Wife's liver enzyems ( Alkaline Phosphatase) came very slightly high in one of the blood test they did earlier. Our oncologist was deciding whether to do a pet scan to look for any cancer cell in liver. This information was very troubling and discouraging to say the least. But the lab they used has slightly different reference range then we generally use it for our yearly blood check and as per the 2nd lab the liver enzymes are within normal range. Before doing the pet scan they ran one more blood test for liver enzymes and this time it comes back normal. So currently we are not doing any pet scan and will monitor the liver enzymes in subsequent blood test.
As for side effects so far my wife is experiencing excessive tiredness and sleepiness . Also feel nauseous from time to time but anti nausea medicine provided by our doctor helps. Anyone else experienced these symptoms and any input how to deal with them?
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I put fresh ginger root in my smoothies. Have one a day. Ginger is known to combat nausea.
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