TRIPLE POSITIVE GROUP

kae_md99 · February 2017

tunegrrl, i wondered about the Lupron pre chemo and i will ask my MO about it. i no longer wish to have kids as my twin 8 y/o are more than enough for me!!!lol.plus 1 boy and 1 girl, so i am all good in that department, so maybe an ooprorectomy is something to think about later on.i am estrogen positive so i thought also that Lupron pre chemo will or with chemo will zap my cancer better..plus it will help with my endometriosis which give me pelvic pain...danix, hopefully i will start my neoadjuvant chemo with you at the end of Feb...was diagnosed same day as you!fun times indeed.. Leslie, all i know about Perjeta is that it was approved after herceptin was approved so some people did not get it neoadjuvantly , and that insurance only approves it neoadjuvantly for her 2 (+) people... i dont know if it makes a difference or if there are any studies that show if it helps more if you got it neoadjuvantly versus not getting it. i am sure some ladies will chime in with regards to this .

Tunegrrl · February 2017

Leslie, you are getting Herceptin now so all's well that ends well. Perjeta is not available for us in Ontario yet, except perhaps in advanced BC oncompassionate grounds. Your tumour was tiny and FEC-D is like going at it with all guns blazing. Quite a bit more forceful a chemo regimen than TC which is more common for small tumours like ours. Stage 1A is awesome, i can't imagine how neoadjuvant chemo would have helped you. You didn't need it to shrink the tumour to make lumpectomy an option, and you caught it so early, you have every reason to expect an excellent prognosis. You may wish to check out the Predict breast cancer calculator for reassurance. http://www.predict.nhs.uk/predict_v2.0.html

Tunegrrl · February 2017

kae, my impression is that the question of whether it is worth suppressing or removing ovaries hinges on whether the nodes are involved. Without nodal involvement my people didn't think it would be worth it for me. I was keen to stay on lupron if there would be a measurable survival advantage. As it is, the Predict BC calculator tells me hormone therapy only gives me an additional 1.5% survival advantage at ten years. That would be for taking tamoxifen. Ovarian suppression would augment that somewhat, but not by much. The SOFT trial has details.

ElaineTherese · February 2017

Leslie,

No one knows for sure how Perjeta impacts recurrence. It's too new. There are studies, however, which show that women who do Perjeta as part of neoadjuvant treatment are more likely to achieve PCR -- pathological complete response (no remaining active cancer after chemo). The unproven assumption (adopted by the U.S.), then, is that Perjeta should produce better outcomes because women who achieve PCR are likely to achieve better outcomes. Because there's no direct evidence of Perjeta's impact on recurrence and survival, many Canadian provinces do not provide it as part of their standard treatments.

Also, please note that many of our longer-term surviving sisters did not get Perjeta, and many of them are doing fine.

coachvicky · February 2017

Hi Elizabeth7,

Reference your question about chemo ...

My chemo was Herceptin, Carboplatin, Taxotere. Six rounds every 21 days.

I got anti nausea drug for immediate response and a 3 - 4 day delayed response the day of chemo. I also had an oral dissolving pill to take as well (Ondansetron). I still use those because I will not complete Herceptin until August 2017 and the nausea comes and goes.Mine is like mild morning sickness.I also take a prescription Vitamin B complex and I have had some extremity tingling but not much.

The first 2 - 3 days after chemo, I was still energized from all the steroids.

Round 4 was probably my hardest. Rounds 5 and 6 were OK.

I worked out 6 days a week as soon as I could after my double mastectomies and I still do.

Yes, I had side effects but they were not the end of the world. Sure, I was tired and fatigued but I managed to continue my lifestyle. I think the workouts, especially the walking, really helped.Probably the worse for me was giving up coffee the first couple of days.

There are some real up sides to chemo.I haven't shaved my legs or under my arms in months.There is no hair and I sure hope it does not come back! Because I am not spending so much time in the shower I have not been late for any appointments since I started chemo.

My husband used gel cap therapy on my scalp and I never loss all my hair nor had any bald spots.There is a thread on breastcancer.org if you are interested in gel cap therapy.

Here is a blog I wrote about my chemo experience. http://leaderlines.net/my-chemo-rocks/

Everyone will have a different chemo story.I believe it is the unknown of what will happen that is so frightening.How the woman is portrayed in the Neulasta commercial doesn't give chemo a fair representation of how easy it can be.For me, I dressed everyday of treatment with make up just like I did the day after.

I am banking you will do just great.

Coach Vicky

kae_md99 · February 2017

coackvicky,

is cold cap covered by insurance?

Elizabeth7 · February 2017

Oh thanks Coach Vicky

It's funny I looked at my legs in the shower this morning and said to myself 'will I bother'

I do mindfulness and I walk a lot. I love swimming and go twice a week but I've been told that's out while I'm on the chemo.

Due to start on 20th.

E

ElaineTherese · February 2017

Elizabeth7,

I swam during chemo. My MO didn't mind. Then again, I taught during chemo, too. Lots of germy students! I felt somewhat protected by the Neulasta shots I got the day after chemo to encourage white blood cell growth.

I didn't swim during radiation, though. RO said that it would dry out my already-fragile skin.

Juli24 · February 2017

The no swimming policy might be due to chance of port infection however small.

Positive side of chemo - I haven't had to shave arms or legs in forever. I was surprised the arms were on both sides since I asummed it was a result of radiation. Not the case!

Leslie2016 · February 2017

Tunegrrl and Elaine..thank you. I know Perjeta isn't approved up here in Canada for my case, only for Stage 4...and I know my chances are still pretty low for re-occurrence. I just wonder if I had known I was triple positive before my surgery if my doctor(s) would have made different choices, or if I would have (M instead of L). I know I am getting very good care, and that I'm very lucky I found it so early. I just hate the fact that decisions were made and I didn't know that I didn't have the whole picture when they were made. (I was thinking mastectomy, BS convinced me to do a lumpectomy, but also said it would be "just" lumpectomy/radiation since I caught it so early...chemo was never on the table....until my MO tracked down my receptors. Then, chemo started within a week...it was kind of scary it was so quick....like, we should have done it sooner). It just all makes me think...and I know if I ever have to do this again, I will insist on having all the info before I do anything. (not that I plan on doing this again....this all sucks)

Suburbs · February 2017

Hi Leslie2016. At perjeta.com, there is a page that outlines the use of the therapy in the neoadjuvant setting. The tumor must be 2 cm or greater in the US due to FDA guidelines. I was being scheduled for immediate surgery and my final pathology came in HER2 positive then the treatment plan changed quickly - TCHP first. The initial pathology took 4 days with subsequent staining completed 3 days later. Hope this helps.

BCS2016 · February 2017

I'm scheduled for my 4th TCH treatment this week. Here's my question - I haven't lost my eyebrows or lashes. Is that still to come? Also never lost all of my hair although I buzzed it right before 2nd treatment.

coachvicky · February 2017

kae.md99

My insurance covered wigs but not cold caps.

I bought mine at Amazon. Wish I had thought about eBay!

Coach Vicky

coachvicky · February 2017

BCS2016

My lashes and brows thinned a couple of weeks ago. I started chemo 23 August. I have my third round of Herceptin today.

Everyone is a little different I think about what happens when.

I am using castor oil as a topical application to help my lashes and brows thicken

Coach Vicky

coachvicky · February 2017

Best wishes Elizabeth7!

Coach Vicky

SpecialK · February 2017

I never completely lost lashes or brows - the brows thinned but I just used more of the same tinted brow gel I had been using prior to chemo, lases became more sparse and uneven, so I wore a lot of eyeliner and I don't think anyone noticed. I also never went completely bald, but definitely didn't have enough hair that I didn't need to cover my head with something.

Tunegrrl · February 2017

BCS2016, my impression is that for most people, eyebrows and lashes hit their sparsest point around four weeks PFC. Brows begin to reappear two to four weeks after that, maybe a bit longer for lashes. It doesn't last very long, the sparse time.

Anonymous · February 2017

I had taxol with herceptin weekly for 12 weeks and then just herceptin. While getting chemo, I also received an anti nausea med and steroids, via my port at the same time. I had a prescription for zofran melts. I took acetyl l-carnitine, a b complex, vitamin d. Iced my fingers and toes. Didn't really have too many terrible side effects. Virtually no nausea, other than the occassionaly queasiness. I will say that the first couple of times that I got the heavier does of Herceptin on the three week schedule after chemo, I did not do well, but thanks to this board, I had them slow it down and it helped a lot. Doc also said I could have continued weekly.

He did bloodwork everytime I went before I had chemo. After a few weeks, I went over the day before when I was out and about, had them access the port and pull bloodwork so that I was ready to go when I went in in the morning. I had some neuropathy in that my hands and feet were ice cold continually.

Hair stayed wearable but thinned until about 6 weeks or so in. Then switched to a wig, but never did shave it. Just looked like beetlejuice. Eyebrows and eyelashes never fell out. Then three weeks after chemo was over...boom...they fell out. But they were already growing in.

My tastebuds totally changed. Hot food and meat just didn't cut it. I had a smoothie every day with kale or cucumber, apple, carrots, celery, banana, whatever sounded good. Wine, which I love, tasted like acid.

I think that is all I can think of now. I took a light snack and my smoothie and an iced tea to all my infusions. I also did not like sitting out in the main room, so asked for a private room whenever possible. I just liked to chill, watch tv, read on my ipad and not have a chatty sesion.

I felt great for 24 hours afterwords, ran around worked out, stayed up all night due to the steroids. Started to come down around noon on day 2, day 3 slept a lot, then by the weekend, I was usually pretty good and could go out.

Suburbs · February 2017

SpecialK, thank you for the welcome. I am reading that supplements help and are not out of bounds for some. I am going to pose this question again.

Day 5 of first round. I just feel strange. As soon as the steroids wore off I was tired. I have twinges flying around my body. It's not painful but weird. One minute it's a headache and the next it's a twinge in a knee or shoulder. It's like all these chemicals are cruising around looking for a good spot to put down their towel. Early morning and before bed are the bewitching hour. My gut is not happy. I've already figured out that anything not bland or cooked frozen then reheated is not tolerable. 120 more days to go of the fab 4 having a party and I am the designated wallflower.

Fighting

SpecialK · February 2017

suburbs - I regard chemo as essentially a poisoning just short of a lethal injection, so any and all side effects are possibilities. Neulasta, while needed, is just piling on. I too found that bland stuff was best, and thanked heaven for potatoes, in any form - they were my saving grace. Smoothies, yogurt and fresh fruit, particularly melon for the tolerable texture. I ate a lot of red meat in the 10 days prior to the next infusion, but I couldn't taste it or enjoy it, I just knew I needed to ingest it.

Kattis894 · February 2017

I have a question for those who have done radiation. I have 13 times left out of 25. Things have gone well until now but now noticing a lump in my scar under the arm. I will ask about it tomorrow. It might just be from the skin being irritated and feeling tight but I am worried.

Anyone else experienced this during radiation. I am hoping this is not already more cancer.

mltdd · February 2017

Hi Kattis. I believe it's normal. My surgeon told me prior to starting rads that the area of the lumpectomy would get hard and it did. She said it takes about 6 months after rads are finished to soften. For me it's been almost 8 months, and it's still hard. She ordered an ultrasound to be safe. Apparently a seroma has formed. She said it should dissolve on it's own eventually.

ElaineTherese · February 2017

Hi Kattis!

Definitely talk to your radiation team about it. It's probably nothing, but it sounds like you could use some peace of mind at this point.

Blownaway · February 2017

I had my lumpectomy July 2014 and have just recently noticed that my scar is starting to soften and the area of hardness seems smaller in size than it was.

Kattis894 · February 2017

Thank you for your replies. I asked and it was a pimple (bolder) ..:) Who knew! It just shows how scary this is and I can not shake it.

Hoping things will get better with time. Well, hoping.

Kattis894 · February 2017

I am maybe beyond scared for this to come back so freaking out about most everything. A headache I go directly to brain mets. I threw up the other night I go directly to mets somewhere and so forth. Not sure how to handle it but will try to figure it out since living with constant fear is not the way to go. It is just so random and out of control it is hard to let it go and just live.

Maybe I am being hard on myself but also disappointed I am not starting to exercise as I was suppose to..I am blaming the exhaustion of my laziness but was lazy before cancer too...so now I just have a reason to continue laying around not doing yoga, walking or taking good care of myself. I am so used to take care of everyone else around me so it is difficult to start now all of a sudden. I am getting a bit isolated with the illness at this point and need to at least start trying to be more social and basically " have as much fun as possible".

I have always travelled a lot with work and that came to a complete halt so also "stuck" with treatment. I would have to change my carrier in order to work, so I guess that is not going to happen any time soon.

Heading for the dentist since I was told to do that at this point. The fright kind of dawned on me when I was told to keep my port for at least 2-3 years just in case...well...

kae_md99 · February 2017

ladies, how much mg of B6 did you take to help with the neuropathy? i will start TCHP hopefully next week as soon as my MO gets the authorization. also did you chew ice all throughout the infusion?thanks

Suburbs · February 2017

Kattis894, I am still new to this but can completely relate to your comments. I am living in a state of high anxiety and paranoia, worrying about a recurrence when I have not even gotten through initial treatment. Every twinge, ache, pain, what-have-you has me imagining that my diagnosis was under-estimated and that I am worse off than the reports say. 22 years of mammograms seem like a cruel joke.

Anyway, I see how far you have come in your treatment and I think that you have come a long way in a short time. The myriad of "shoulds" and "don'ts" are daunting. If it helps, just your list of accomplishments (e.g. Therapies you have survived) are an inspiration to a newbie. Thank you for sharing those dark thoughts. It helps me feel more normal.

coachvicky · February 2017

Ladies,

Thank you all for these heart-felt posts.

I believe that uncertainty, being scared, feeling stuck, having anxiety are all part of this cancer journey. I finally asked my Oncologist for a prescription to help me calm down the weekend before chemo on Mondays. One Sunday night I made 8 quarts of pickles hacking the cucumbers so hard I thought I'd break my counter tops!

I, too, use to travel with work for about 200 days a year. That has been significantly reduced. I discovered I really like the town I live in and truly enjoy my home. Friends helped me with my garden so I was able to enjoy that as well.

Exercise? Not a fan. However, I did not want Herceptin to interfere with my heart's pumping function. I now walk 6 days a week at least 2 miles a day. A friend wrote me the day after my first chemo and said I hope you are up moving. If you don't move, you will be sick. Work with your chemo and move. I drug my butt out of bed and started to walk. Best advice I ever got. I have lost 47 pounds by moving and eating a high protein and balanced diet.

At some point, when the crying finally stopped, I made up my mind to be positive and do everything I could to beat this. That decision gave me control. That decision gave me power. For example, my hands and feet swell after chemo. I gained about 3 pounds each round and had 21 days to take it off before the next round. My Oncologist's Nurse said if that was my worse side effect I could deal with it. I asked her how easy it was for her to take off 3 pounds in 21 days. A follow on conversation with my Oncologist got me a prescription for the swelling. I can now wear my wedding rings!

Cancer takes away the security of feeling safe. However, cancer has given me a big wake up call. My husband and I are both healthier. I have found out who my real friends and family are. I have finally realized what is important in life and it is not working a sixty hour week.

I never thought I would say this but these breast implants are awesome! Why I ever considered anything but a double mastectomy is beyond me. Best decision I ever made. I am scheduled for a hysterectomy this month. That will eliminate theworry of any cancer spread to my reproductive system.

I hope these ramblings will be helpful. It really does get easier.

Coach Vicky

SpecialK · February 2017

kae - I took 100mg of B6, just a regular capsule daily. I iced during Taxotere only. I brought bags of frozen peas for fingers and toes, and a big insulated tumbler of ice chips that I held in my mouth. I did not chew them just held them until they melted and then got another mouthful. My Taxotere infusions were over 60 minutes.

TRIPLE POSITIVE GROUP

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