Just diagnosed: Any ER-/PR- HER2+ doing TCHP? Cold capping?

TaraMom22

This is my first post since creating a signature, so I will post my info in case my info doesn't show up: DX: 1/16/2020 IDC 8cm Stage 2

Everything is happening so fast. I have seen the surgeon twice, had an MRI and saw the oncologist this morning. The plan is to start with neo-adjuviant chemo: TCHP -a combo of docetaxel, carboplatin, trastuzumab, and pertuzumab. I will do 6 rounds of that, 3 weeks apart. Then a mastectomy, then Kadcyla after that for 9 months to ensure there isn't anything remaining.

I am overwhelmed and scared. I also feel horrible about the idea of being bald. I am older and chubby. My hair is beautiful. I feel like without my hair I will look 20 years older and 50 lbs heavier. In addition to having BC, the idea of "being ugly" (my words) is really hard to get used to. I have a friend that did cold capping and swears by it. I have other friends who got their BC more than 4 years ago and didn't do cold capping. The oncologist today said cold capping doesn't work with the TC in TCHP, but I also got the idea he thought it was dumb in general, so I am not going to trust him to give me good info on cold capping with TCHP. Would love to know if anybody that did TCHP did cold capping and did it work.

Other info in addition to cold capping also appreciated. I am so overwhelmed I am not functioning well.

DATNY

I was never interested in cold capping, but I've read about it nevertheless. It seems hard to do it right and it comes with some risks. It works because the meds don't flow easily into the cold area. But there is a chance some cancer cells could hide there because of it.

Before you know it, it will be over. I did intermittent fasting (eat from 12-4, mostly veggies), never needed any nausea meds and lost a good amount of body weight in this process. I also kept moving and walked a couple of miles daily. The horror story that I remember is about Neulasta, the white cells making medicine. It gave me unbearable pain, which diminished considerably after I was changed to Neupogen, the alternative.

MinusTwo

Sorry you've had to join us; Below is one of the good theads about tips for chemo. There are a number of threads about cold capping. You can use the search section on the left. Chemo is a bitch but it's manageable. Find & join a monthly or quarterly thread with ladies going through the process right how. I also read the thread for the month before.

https://community.breastcancer.org/forum/69/topics...

CoastalXPat

Hi TaraMom, I did TCHP back in 2014 and used cold caps, they worked very well for me. That said, my diagnosis was a little bit different, ER+ and Stage I. My MO mentioned a very small risk of cancer cells residing in the scalp, but she felt the risk was extremely low for me & so she was very supportive of cold caps. Since your diagnosis is different I'm guessing your risk could be different; hopefully your MO can help assess that so then you can decide if you think it's worth it. Btw it never hurts to get a second professional opinion if you feel your MO isn't really answering the question.

I'd also follow MinusTwo's suggestion about checking the other threads on chemo and also cold caps, you'll hear a lot of different experiences.

From my perspective, I'm very happy I did the cold caps, it gave me some anonymity & meant I didn't have to explain to everyone what was going on. It also was one less side effect, helping me feel closer to normal, which was important. It's also true that it is a lot of work, and it can be expensive. Part way through my treatment my infusion center got a freezer, which made things much, much easier. Also more recently I think some insurance companies might cover part of it. There's a ton of great info on the boards and in the main breastcancer.org sites, I'd say check them out!

Wishing you the best of luck -

Beesy_The_Other_One

Tara,

We all wish you had not had to join us here, but this can be a very helpful place--it's where I learned about icing my hands and feet to prevent neuropathy from the Taxotere. Not everyone prevents it with icing, but I iced and did not get neuropathy. We are a minority here with hormone negative, HER2 positive tumors, but our high grade tumors generally respond well to the chemotherapy. My tumor wasn't large at biopsy (1.5 cm) but within two weeks, the largest dimension was 7 cm and the other two dimensions were equally horrifying. At that point I was more interested in stopping the growth than saving my hair, so I did not cold cap, but I've often wondered if the whole experience would have felt less traumatic with hair (or some remnant of it), and by observation, I would say that those who keep some hair find that the regrowth seems to go much faster. In my case, the Herceptin for a year slowed my growth and after a year, I've had only three tiny trims around the ears and back and just now don't look like Dash from the Incredibles, but my situation doesn't seem to be the norm.

I would not let your MO sway you--it's not his hair and he's not in the situation. I do not believe he is correct to say that it does not work with TCHP, but you can find out by checking out this thread: cold capping.

Keep us posted as you start your treatment--we have walked the same road and understand where you are, in a way that not everyone can.

TaraMom22

Yesterday was my first day of chemo.

First, I changed my MO. The one I saw first was the MO with the first availability in my medical center. It was clear why. He had no bedside manner, used no compassion delivering devastating news, and mostly looked at my husband while talking (and I am almost positive I am the patient, NOT my husband). As soon as the MO left the exam room, we turned to each other and said in unison "that will not be my doctor". My new doctor (referred by 2 different prior patients) is so wonderful in every way. I will be getting a 2nd opinion at UCSF because though the TCHP and mastectomy seem pretty standard protocol, the radiation and targeted drug treatment after the mastectomy don't have a single standard protocol so I want a better understanding on why there is a lack of agreement on that part of my treatment and what my options are. Some say Herceptin after chemo for an additional 14 cycles, others say Kadcyla is better than Herceptin after surgery, and my MO said there were studies on newer targeted treatment protocols after mastectomy that she would want to look into before making a recommendation.

Second, I did choose to cold cap. My one concern was the very rare chance of having cancer cells in my scalp. I read a study that included 2 women with breast cancer, with cancer cells in their scalp prior to treatment. The Taxotere killed the scalp cancer cells even though they cold capped. The study indicated that they believed that the Taxotere got to the scalp, just not with the intensity to kill the hair follicles, but with enough intensity to kill the cancer.

Finally, after all my worry, yesterday was good. There was really no pain or discomfort from the chemo. Even the cold caps didn't hurt, though they were annoying. My day was so LONG. I know the first day of TCHP is normally long, but the cold capping added so much time. I started at 8:45am with the flush and pre-meds. Finally got the Herceptin at 9:30 which took 90 minutes since it was my first time getting it. The Perjeta started at 11:00 also with a 90 minute infusion. When that ended at 12:30 we started cold capping because I had a 60 minute observation before the next drug. I used Penguin Cold Caps and used their White Glove service, which means they sent an experienced cold capper who brought everything. That costs an extra $500 but was so worth it. Taxotere started at 1:30 with a 90 minute infusion, followed by Carboplatin for just a 30 minute infusion and a 30 minute observation. At 4:30 we (and our cold cap person) went back to our house for an additional 4 hours of cold capping. I had no reactions, no side effects. I did use ice socks on my feet during Taxotere and Carboplatin, used bags of peas on my hands, and sucked on ice in the hopes of avoiding neuropathy and mouth sores.

I understand that side effects will kick in tomorrow, but could be pretty mild given it is my first cycle. I have had a number of people say that side effects get worse after each subsequent cycle. Is that what others experienced?

Newfromny

I did TCHP , had a large tumor and had PCR . Since I had complete response I continued on herceptin perjeta for a year. I did not cold cap, tried it for one infusion but it was hard and not for me, but it’s really an individual decision. I did hate losing my hair but it’s coming back slowly. TCHP was hard, but the results were good so looking back the difficult days were so worth it. I thought the 4th and 5th infusions were hard, I needed fluids a few times, and afterwards felt much better. Just hang in there, don’t hesitate to ask us questions or just vent when you need to. I wish you all the best

DogMomRunner

Hi TaraMom- my tumor was smaller and I only had the Taxol/Herceptin combo. I iced my hands and feet (minimal neuropathy) but did not cold cap. I clipped my hair short after the 3rd treatment and lost it all around the 5th. My hair was curly and it was hard to find a wig so I went with soft slouchy hats. Lots of them. I worked full time and my coworkers were great. I felt self conscious at first but finally embraced it. I got hair back about 2 months after the end of the Taxol in time to go as "Eleven" from Stranger Things for our company Halloween party. I am still wearing it short.

I'm glad you have a MO that you feel comfortable with. That makes a big difference. I'll second the Taxol thread under the "Chemo" section here. It's great to have others going through it with you. Good luck with your treatments. And welcome

BellasMomToo

Taramom: Yes, chemo is cumulative so the SEs (with TCHP anyway) will get stronger with each infusion. I had my infusions on a Tuesday and my fatigue would really kick in on Thursday right after lunch. The worse of my SEs (fatigue, diarrhea, constipation, wonky taste buds, abdominal pain) would last from day 3 to day 11. My fatigue got really bad after the 3rd infusion and got progressively worse. I did not cold cap. I did not ice and did not develop neuropathy. I did not get mouth sores, but came pretty close. The baking soda & salt rinse seemed to help prevent mouth sores for me.

Sounds like you're doing great!

P.S. 2/14/17 was my 6th and final chemo.

DoubleG

I was diagnosed with ER/HER2+ BC on April 1, 2019. When I was told I had BC I just shut down emotionally and tried to digest the information in small doses. At 61 years old I had a great head of hair. I purchased a polar cap (Paxman). The polar cap attaches to a machine. You have to wet your hair before putting on the cap. The first couple hours are difficult because it takes your scalp into hypothermia. I brought a blanket to chemo. In addition, the nurses were kind enough to provide warm blankets. At the end of the chemo session I would have ice on my head. Before removing the cap wait about half hour so the ice melts and it's easier to remove the cap. I've been asked several times if I thought it was worth the expense and discomfort. Mostly it saved about 60% of my hair. I was able to wear beanies. I really wanted to keep things normal for as long as possible. I'm glad I used the polar cap.

TXAG20

Hi Taramom: We have a VERY similar diagnosis. I was diagnosed on Feb. 4th with ER/PR-, HER2 positive, grade 2, no lymph involvement. I am 46, and otherwise very healthy and active, so this has stopped me in my tracks. Im so glad to hear that your first treatment went ok. My first treatment os scheduled for 3/3. I will follow closely to see how you are handling the treatment, it has been so helpful to hear from others going through this. All the best to you, you got this! I am in Houston, so very grateful to be treated at MD Anderson. There have been huge strides in HER2 +, so my hope is that we all benefit from that. I wish you continued success, you got this!

TaraMom22

Hi TXAG20 - If you are like me, I have struggled to stay focused on what needs done, and not let the fear take over. Now that I am done with the first round of chemo, I am more focused on the day to day side effects and less on "CANCER". I had no issues with my actual chemo, except it took forever and I was tired of sitting there. I took myself for walks around the infusion center to stretch my legs. Day 2 was pretty easy. Having an easy day 2 gave me all kinds of ideas that round 1 recovery would be easy, but about 10am on day 3 I started with the "flu like" side effects. Icky stomach that the anti-nausea drugs didn't fix (they kept me from throwing up, but not from having a sort of "car sick" feeling) and lots of joint pains. The middle of the day seems worst. I will wake up feeling pretty good, and then feel bad for the bulk of 10am-6pm. Today is day 6 and I woke up feeling normal, took a walk, and now at 9:20 I am thinking of going to lay down. I had felt so good this morning that I thought I was over the worst of this rounds side effects. Hopefully a little nap will help and I won't be down for most of the day. It is hard to anticipate going through this 5 more times.

TXAG20

Taramom, I have read a lot that days 3-7 are the worst. I am hopeful that you are through the worst of it for round 1. I too will have 6 rounds, and right now I feel like I am just looking at a storm ahead that I have to walk through. I am still up in the air on the Cold cap, Im just not sure if I want to mess with it. I have heard that there has been a lot of success with it, so it's tempting. I hope your nap helps, hang in there.

mheibel

I was diagnosed on January 17th with ER/PR negative, HER2 positive stage 2b breast cancer. I will have 6 infusions, 3 weeks apart, then have surgery, radiation, then continue with herceptin until February 2021. My plan is to continue to work during my treatment. I had my first TCHP infusion on February 13th. It lasted 8 hours and went well. The day after I felt ok and was able to work and I had a lot of energy, then the bottom dropped out. I have been suffering from extreme nausea, loss of appetite, and fatigue. I know I'm not drinking enough fluids.

I was prescribed 3 nausea drugs. I'm supposed to take the first one and if that doesn't work, then go to the second one, then the 3rd one. The 3rd one is Lorazepam. I took the Lorazepam at night to sleep. Each day I woke up and felt awful, very sad (normally I'm optimistic) and thought it was all a part of the journey. Last night for the first time I didn't take it and today I feel better (still have a little nausea).

I think I set unrealistic expectations for myself. I thought I would have one bad week, have two better weeks, then start the cycle again. I know everyone is different, but I was disappointed and wondered what I was doing wrong. I now believe that this is a learning process and I am still figuring out what works for me to battle the nausea and fatigue. Smoothies are becoming my go to for sure.

I started out with constipation, and now have diarrhea, but am trying to manage it. In addition, I can see areas on my face that are red and some are becoming open sores. I wear glasses and where they rest on my nose is becoming irritated and red. Has anyone else experienced this? If so, what is the best remedy? I have bought all kinds of moisturizers, but so far no great relief. I know I'm not drinking enough and that may also add the the issue, but I'm trying.

I'm grateful that others are sharing their experiences and it's comforting to know I'm not alone.

Moderators

mheibel, we welcome you here, and sorry for what you're going through. It's true that it's very difficult to plan how your are going to be affected by treatments. Each person reacts differently, so all a learning experience. Try to be gentle with yourself and take the breaks you need to keep yourself stronger. We're all here for you.

dono7392

I am doing TCH and cold capping. I just finished the 4th round and still have my hair but it has certainly thinned. We used Penguin Cold Caps and were helped tremendously by a YouTube video online showing how to use it (by a husband who helped his wife with it). If it works for the full term, it will have been worth it for me, but it is a major pain and very expensive (for dry ice too). For neuropathy prevention, using icing, acupuncture, and b vitamins. So far so good, but time will tell. Best of luck on whatever you decide.

Beesy_The_Other_One

mheibel,

We are a small group here because statistically speaking, we're in the minority being hormone negative and HER2+. When I was diagnosed, the staff at the cancer center where I'm treated told me that the effects of chemo would be cumulative. After my first treatment (TCHP also), it knocked me on my you-know-what. I remember telling my husband that if this was going to get worse, I was not sure I could do it, and I tend to think of myself as a tough nut to crack. When I went for my next infusion, I learned they had given me what's called a loading dose--in other words, a larger dose (my tumor had grown quite large right after diagnosis). Maybe they did that with you? Our subtype of tumor is aggressive and fighting it aggressively is important. I literally could feel my tumor dying--it sounds crazy, but I felt the war going on all throughout chemo. When I had surgery, all they could find was the tumor bed. Be encouraged that the treatments we have are good, even though they are not fun.

After each successive chemo infusion, I actually popped back faster and I hope that's the case with you. One thing you might consider is asking for IV fluids/electrolytes. I have never done this, but I'm on Nerlynx now (an oral drug which might be offered you later) and there's a woman on that thread who was so lethargic she finally went to the ER for fluids and it made all the difference. You can only go so long with diarrhea and not eating or drinking enough. Call your doctor and tell them how badly you're feeling. I wish I had some thoughts on your facial skin, but anything I'd offer would be a guess. I would address that with your doctor also. Please PM me if I can help further. You are not doing anything wrong, but your body is fighting a literal war, and you want to win!

TaraMom22

Beesy, I sure hope you are right and the next chemo is not worse than this first one. Today is day 11, and I have been feeling like myself at times but still have side effects. Last night I completely melted down. I told my husband if it weren't for him, our kids and my mom and all the people who love me, I don't think I could keep doing this for another 16 weeks.

I have always had a sensitive stomach. They gave me zofran, compazine and ativan to fight it, but even with all 3 I had to really watch my dosing to ensure that I could always have a recent dose to keep my stomach under control. Then I found out that compazine has probably been the cause of my restless legs. I have had restless leg syndrome for 30 years and have to take meds for it and watch what I eat and drink to keep it under control. Having my legs twitching and keeping me awake when I was so tired made me a crazy person. Add to that, I just was NOT expecting the issues with my taste buds. I had been told that they get wonky, but had never heard about what I am dealing with. I cannot tolerate the texture of food. At all. Almost every food tastes like sawdust or sandpaper on my tongue. I have limited what I eat to egg whites, pudding, custard, milk, bananas, and cream of wheat cereal. I can sort of tolerate potatoes if they are cooked and blended with milk and butter until they have no texture. I think all the milk plus the chemo has caused my diarrhea.

Thank goodness I am overweight, because the weight has been dropping 1-2 lbs per day. I spoke to a nutritionist and we have tried to come up with things to eat. Between not being able to tolerate anything with flavor, and not being able to tolerate anything with texture, I am very limited on ideas of what to eat. I need to go search the rest of the forum and see if anybody else has dealt with these side effects.

I wasn't prepared for how restless and unfocused I would feel after chemo, and for so long. I had planned out books to read, movies to watch, tv shows too, plus some projects. I can't seem to sit and focus for more than 10 minutes so very little is distracting me. If I could just sit on the sofa and feel bad and watch tv and doze I would be happier than this unfocused restless feeling.

Beesy_The_Other_One

Tara,

I'm very sorry to hear about your side effects. The food issues can be real: I certainly was not eating a plant-based healthy diet during chemo--I was just trying to survive and nothing tasted good at all. But eating what you can, as you are doing, is all you can do. I wonder whether homemade smoothies with protein powder would give you some added protein? I know it sounds crazy, but in my case, it was if my body finally realized we were going to be putting poison into it and it finally said, "Okay, I give up." But after the first loading dose infusion, I promise you I couldn't imagine things getting better. Your sensitive stomach issues and restless leg syndrome are complicating factors I can't speak to, but I would communicate with your doctor in hopes of finding help.

mheibel

Beesy:

Thank you so much for posting. I too had a loading dose, so I'm hopeful that I will have a similar response and bounce back quicker. I'm feeling pretty good now and will have my second treatment on Thursday.

I did end up seeing the doctor about the skin on my face and was diagnosed with shingles....yes shingles. I'm like, really!?!? But I was put on medication right away and it's definitely helped. My nausea has turned into a "sour stomach". In addition, I realize that I can't take the nausea medicine with valium, because it makes me very, very weepy. I'm just a mess on it. I have two other nausea medicines that I've been prescribed and I'm going to stick to them (after my next treatment) and if I have trouble sleeping, I'm going to take melatonin at night.

I got my hair cut short a week ago (it was shoulder length) to help me transition to hair loss. Yesterday, (16 days after my first treatment) it was coming out in clumps. My daughter came over to shave my head. I do have a wig and lots of hats, but today, I'm sporting a scarf and loving it. I've watched lots of tutorials on how to wear scarves and I think might go that route. I am working through treatments, so tomorrow will be an interesting day at work.

Thank you for sharing and giving me and others hope!

Beesy_The_Other_One

mheibel,

SHINGLES! Well, you should consider yourself very tough, weathering that and the side effects of chemo! I have known two other people who ended up with shingles on chemo--it makes sense, because your immune system is so suppressed, but you should give yourself extra points for being so tough.

Keep us posted on how you do after the second chemo. You've learned what affects you adversely and maybe some of the adjustments you mentioned will make it easier. I did the same thing with my hair--once it was falling out and making a mess, my daughter shaved it. No point dragging it out like slow water torture, at least for me. Hang in there!

SanDiegoHeidi

Hi

Would love to hear how treatment is progressing. I start Tuesday 4/21 and trying to decide on cold cap company.

Thanks,

Heidi

Moderators

Welcome SanDiegoHeidi. Sorry you find yourself here, but glad you found us. What does your treatment center recommend in terms of cold caps. Here is a section you may find helpful: Cold Caps and Scalp Cooling Systems.

Please all keep us posted!! Your Mods

TaraMom22

Welcome SanDiegoHeidi!

First the GREAT NEWS: I did a follow-up breast MRI 3 days before my 4th chemo (out of 6, so the halfway point) and THEY COULD NOT SEE ANY CANCER!!! My MO was thrilled for me, but also cautious about reminding me that cancer can remain but not be in large enough clusters to be detected by the MRI. I was beyond thrilled. There were some happy tears shed.

I did my 4th chemo on Friday. The side effects are back in full force. Even my Zofran, Phenergan and Ativan can't control my nausea. I have painful rashes on both hands. I have diarrhea. The worst has to be the eating issues. NOTHING tastes good. I have to force myself to eat, and there are only about 6 foods I can force myself to eat.

The cold capping is working pretty well. My hair is falling out, but enough is staying put that I am okay with the results. Definitely not as good as some have posted about, but still good enough to be glad I chose to cold cap. I joined a cold cap facebook group that is very helpful.

My MRI results make it easier to tolerate all these side effects. As long as the chemo is killing the cancer, I can keep a positive attitude about the side effects.

Please let me know if you have any questions.

Beesy_The_Other_One

Tara--WOOHOO and Congrats! If your tumor responded that well by the halfway point of chemo, it's looking great for you! You are so right that when you are seeing the chemo work, it makes dealing with all the fallout much easier.

I had the same issues with eating and food. In my case, everything tasted like metal. My daughter knows I have a weakness for salty/greasy things and don't eat them in normal times. But I had started really losing weight so she brought me some white cheddar cheese popcorn--and it was finally something that had a strong enough flavor that it didn't taste like metal. I will not tell the entire Internet how many giant bags of white cheddar cheese popcorn I ate during chemo, but it stopped my weight loss and I even gained some weight back (so it was a lot). My point in all this is maybe something that is a treat for you or something with a strong flavor might entice you? During chemo I laughed with my family because ideally you should be eating nutritiously while actively fighting cancer, but if all you can eat is your six foods or cheddar cheese popcorn, well, I guess it's the small victories. 🍿🍿🍿

Hang in there, and congrats! So happy for you!

SanDiegoHeidi

Great to hear the good news!!
I start #2 chemo of 6 next week. I have shed a ton of hair the last two days but still have a ton since I have very thick hair. Will continue with cold caps since it seems like I am keeping 50 percentage of hair so far.
Sorry to hear food is yucky. I am at the stage where water tastes like metal. I love Beesy comment,”find small victory in a food what ever it might be!” thanks

Here’s to the brighter side of a good attitude—it makes this process tolerable! Cheers!

Mimsy2

So helpful reading all of this.

I too have been diagnosed ER-/PR-HER2. Full mastectomy on left breast with an extender put in to start breast reconstruction.

The initial diagnosis was DCIS stage 0 but jumped up after pathology results. So I kinda went from : you've got this...it's ok. to

Uh oh! I have osteoporosis and a massive aversion to nausea so I am terrified. Internet threads say chemo treatment doesn't really add/extend time to life expectancy by much and may not be worth it. But I'm guessing that this HER2 marker is a game changer.

MinusTwo

Mimsy - stay away from Google. It will definitely scare you silly.

If you are HER2 positive, the normal protocol is chemo first - before surgery. Because HER2 is such a fast growing component, they like to hit that first & hopefully shrink any tumor before surgery. I did it at at 69. Not saying it was a walk in the park, but definitely doable. I had preventative drugs and did not ever have even one minute of nausea. And oh yes, with HER2 plus it's likely that chemo will allow you to live. Still it depends on grade & stage & size and so many other things.

WHen you get a minute, go to my profile & enter your diagnosis & treatment plan to date. You'll need to make it "public" for others on BCO to see it, but people will be better able to answer your questions.

TaraMom22

Mimsy - Now that you know you are HER2+ you must get Herceptin or it would be a death sentence. Whether you do chemo is between you and your doctor. HER2+ is super aggressive. You haven't posted your age or what the final diagnosis was after pathology. I would suggest joining a Facebook group called HER2 POSITIVE BREAST CANCER SUPPORT AND AWARENESS GROUP. It is a very active group and I have learned SO MUCH on there. Your choice on whether to participate or just read what others post.

I haven't updated my bio for months, since I rarely come here any more. I spend most of my time on the Facebook group. I did 6 rounds of TCHP (Taxotere, Carboplatin, Herceptin and Perjeta). After 3 rounds my 3" tumor had disappeared, and my husband and I both think it is due to the Herceptin (and maybe the Perjeta), but not necessarily the Taxotere or Carboplatin. We both think in 10 years that HER2+ will only be treated with Herceptin and Perjeta. Those drugs have minimal side effects, and nausea isn't one of the side effects I suffer from. I am still finishing my 18 doses of Herceptin and Perjeta, and my worst side effects are watering eyes and inflamed cuticles. Many struggle with diarhea with Perjeta, but luckily I don't have that side effect.

Watch the movie Living Proof. It is about the invention of Herceptin and the doctor that created it. It is a good place to start your HER2+ education.