Starting Chemo May 2015

Shanann

sharapril- please let us know how it went. You are in my heart and in my prayers I pray for all y'all 🐥 While getting rad.

tjh

I had my 3 month check today....Bone scan was great and blood work all great except not drinking enough water...common problem with teachers. Next check 3 months with a mammogram. I have to say I was very shaky going into the Imaging Center...that is where thus dark time started ...but all is great and looking forward. Talking to you all has made this journey doable.....Hugs and Thanks to all.

StefLove

Got my drain out as well as my path results from the surgery! Surgeon said no cancer was detected in either the additional tissue they removed at the lumpectomy site or in the nodes that they removed either! He did say that they could tell that cancer used to be present (scar tissue I think he said?) but no longer.

Now I'm just sitting here waiting for my drain incision to stop 'leaking'. Nurse and surgeon said that's normal and it should last a few days. But now for some reason the medical tape I'm using is causing me to get red and itchy so I have to go run to the store and find something a little easier on my skin. Arm and surgery areas are still uncomfortable but getting better every day!

Meeting with the RO next week to talk about radiation. Fun.

rainnyc

Hi StefLove, Congratulations on you path results! Great news. Come join us on the Fall 2015 rads thread. Lots of us going through it and some great suggestions. I start mine in a week and a half. And yes, it was a great day when the drain sites stopped leaking.

sharapril1021

Hi Everyone! It's been a few weeks and a lot has happened. First off, I had my drains removed on 11/5 and since my BS was off her colleague went over my path results which was: tumor shrunk from 4 cm to 1.6 cm (did chemo before surgery), BS was able to get clean negative margins & 4 additional lymph nodes she removed during surgery tested negative..YAY! Bad news had to do radiation which I am suppose to get tattooed in 2 days (11/19) but still can't get my right arm over my head. When I came home from hospital I was very careful with that arm and didn't move it as I should so now I'm trying to catch up and ramping up on my exercises. If I don't get tattooed Thursday I am going to see if I can move it to Monday in order not to disrupt my start date of 11/30 - 6 weeks, 5x a week. I also start physical therapy on Thursday afternoon as well.

Now here is the other bad news: At my RO appt on 11/12, he was quite puzzled at my original path report (biopsy) that noted I was HER2 negative. Then the path report of the tumor (after surgery) noted HER2 POSITIVE!!! That was his red flag, and told me to speak with my MO. That appointment was yesterday, and he was just as stunned. Apparently there are 2 types of tests used to get HER2 results: either IHC or FISH. Since I went to Univ. Radiology for my Biopsy - they send tests to St. Peter's Medical Center - which uses IHC as their test protocol and the biopsy came back negative. After surgery - the tumor was sent to Univ. Of Princeton Medical Center - which uses FISH as their test protocol and it came back POSITIVE. What this means now is I have to go back to the infusion room for Herceptin (1 year - 1x every 3 weeks) and Perjeta ( 6 treatments - 1x every 3 weeks)....so not happy about this!! I already had my port removed and don't plan on getting another one at all!! Then after Herceptin I have to go on Tamoxifen for 10 years!! Has anyone heard of this happening to them or anyone else? My RO is also presenting my case at his conference this Friday with other pathologists, oncologists, breast surgeons to see if this is a common occurrence.

Yesterday was a crappy day but now I have to suck it up and accept that it is what it is. The problem I am having is trying to stay positive because I feel that each time I get closer to the finish line something gets in my way and now I can't even see it....it just sucks!!

StefLove - Congrats with the end of Chemo....I plan on going on the FALL 2015 Rads board too!

Shanann - hope you are doing well and that your radiation hasn't caused any major side effects.

tjh

I never heard of it changing or different results....I am sorry you had a major crappy day...I am sending you many cyber hugs!

Gina4h

sharapril1021 Yes, my biopsy was triple negative and then HER2 + cancer cells were found in both my breast and lymph nodes at mastectomy and lymph node dissection. A biopsy only removes a small amount of tissue, so may miss the cells that are positive if your cancer is heterogenous (more than one type).

rainnyc

Sharapril, sorry for the disappointing results. For what it's worth, though, I've been on Herceptin and Perjeta since May, and they've been much easier to tolerate than the chemo itself. I'm still on them both after surgery and don't really notice side effects. And they do seem to work really well against HER2+ tumors. I have the infusions with an IV, not a port, and they seem to be reasonably easy on the veins (as opposed to Taxol, which was not!).

rosesrx

sharapril, sorry for the conflicting test, glad the doc noticed. It I was hard to regroup after that detour. Glad to hear the chemo shrunk the tumor. Will be thinking of you for tattoo and Sim.

sharapril1021

Just to give y'all an update, I went for radiation mapping yesterday and after 1+ hours on the table I flunked the procedure. i couldn't get my arm up 1.5 cm more for where it needed to be I am doing physical therapy now to get my right arm up before I go back on December 2nd to try again. Not happy with this set back!

tjh

Wishing you the best on December 2.....Happy Thanksgiving to all!

rosesrx

sharapril sorry about the set back. Keep on stretching, wishing you well in a couple weeks.

Happy Thanksgiving to you to tjh and all!!!

Gina4h

sharapril I can't get my arm up high enough either. We just need to keep strethcing and we'll make it!

rainnyc

Keep stretching, ladies! I will say that the radiation simulation was the most time-consuming part. My arms were both numb afterwards; one was nearly 2 hours without a break. That and the first actual session were pretty miserable, but the sessions since then have been relatively quick.

After the first session I also realized that part of my misery had been caused by the fact that the weight of my head was resting on a clip on the back of my wig. Ouch! One more cancer adventure.

For those of you who lost your hair, is it growing back? I have maybe 3/4 inch on my head. It's unfortunately iron gray, but I'll take any hair at all!

CatsRus

rainncy: I am 18 weeks PFC and while some of my hair (white on top) is *maybe* 3/4 inch long, a lot of it is still very short. And, it appears it is starting to curl. It's a little more salt and pepper on the side and back. I'm going to stay with my wigs for a while yet, I think.

tjh

My last chemo was July 13...I have about 3/4 inch on top, an inch in the back. The top seems to be course and salt and pepper. I had to buy a couple winter beanies...it is late November in Wisconsin. I also went to Soma yesterday and got some new bras....it feels good to begin to be normal again...

justmaximom15

Oh my goodness, I have never even thought about having to do PT just to get in position for radiation!! I'm completely out of shape so we'll see how this goes.

My hair has been growing quite a bit over the last few weeks. It's very light and very "furry". Also, it doesn't have a complete pattern over my bald head, there's a few bare spots.

StefLove

Oops I hit send too soon. Here's my hair, after dying it the light brown. I'm exactly two months post chemo but I also failed at cold caps to an extent so I think that helped keep SOME hair at least. My normal color is dark brown almost black and I"m going back to that next time at the salon. This was using organic dye and it didn't hold as well so the stylist said I can try normal dye next time. It is SO unruly and WAVY! it's also really coarse, which it never has been before either. *sigh* I hate it, I usually have pin straight hair like my wig. Also my eyebrows are coming in!!! I finally had to pluck them to give them some shape and then I fill them in with an eyebrow pencil.

CatsRus

Looking good, Steflove! I'm 18 weeks PFC and my hair is about the same length as yours. Mine is wavy too, I see curls in my future as it gets longer. Mine used to be straight too.

Shanann

Sharapril- I remember THE drain being the THING I wanted out more than anything at the time. I'm really sorry you have to go through all that about the false/different readings. It seems if it isn't one thing, it's something else, but we just keep going, and get through it. I guess when I am done with rads, which should be around the 3rd of December (FOUR MORE), they will do some testing on me to make sure I am still cancer free.

Of course, there is PAUSE...

The worse for me seems to be the Neuropathy (still have it, but not as bad, and I quit taking that nueROTTEN pill 3 weeks after last chemo. LOL

Steflove- Today is 7 weeks since my last chemo, and I have a 5 o'clock shadow on my head. It's coming back dark with strong hints of grey. YOU look amazing!! I see the Oncologist at 2 today, and i guess he'll give me the chemo pill. I can hardly wait

I got my port removed a few weeks ago. I have been trying to loose the weight I gained, and trying to w_{alk 3-6 miles a day- i am feeling more and more normal each day!}

I love hearing how each of you is doing- and I wish you each a very happy Thanksgiving Day, and hope you are surrounded by good family and friends, and are filled with peace and joy!!

tjh

It has been 17 weeks since my last chemo, my hair is 3/4 inch with shadows for eye brows and short spikes for eyelashes. I do have some neuropathy in my feet and fingertips but it is better. Slowly but surely my fingernails are growing back. I didn't have rads so I didn't have to recover from that. I had reconstruction on August 12 and finally bought new bras at Soma last week...royal blue satin with green lace, red lace with sparkles, black and white polka dots, and plain pale pink...and a night gown...almost $400.00 but I decided I deserved it. DH is also enjoying them...I worry it will come back but I have decided not to worry and live positively. I have lost 20 pounds and walk 5-6 miles a day...1 of my students is on escort...do where she goes I go....Enjoy and have a happy Thanksgiving!

CatsRus

Awesome, tjh!! I start my recon journey late January....PMX and expanders. Weirdly I am looking forward to it...at least until it gets here!!

StefLove

Happy thanksgiving everyone!

Shan, I think getting my port out was one of the most relieving things along this journey. I felt like with in, it was just one more symbol of the cancer. Whew, thank god it's out!

awesome tjh! definitely worth the money, I've been on a shopping kick lately too, ha!

Slowly trying to lose the weight I gained during taxol. I had actually lost on AC since I had no appetite but taxol turned me into a ravenous animal. Slowly getting there, about 5 or 6 more pounds to get back to normal!

rainnyc

Thanks for the picture, Steflove. It looks great! I am still using eyebrow pencil but I know I should be plucking and shaping up there.

Shanann, it's great you have 5 o'clock shadow! Once that happened for me, the head hair filled in quickly. Now if it would only give me some length! Still between 3/4 inch and an inch long. I saw my nephews at Thanksgiving, and my hair length was about halfway in-between theirs. I also still have mild neuropathy on the toes and part of the ball of one foot. It hasn't gotten worse but also hasn't gotten better.

Happy Thanksgiving to all!

tjh

Merry Christmas, Happy Holidays, Safe Travel and a Happy, Healthy New Year to all!

rosesrx

Merry Christmas to all!!!

Shanann

Merry Christmas, and Happy New Year, ladies!! I finished my rads about a month ago, and I am FINALLY getting my eyelashes, eyebrows, and little head hair back. i look like boy. A young lady I work with told me I look 'bad ass'. I've been told I look like Jamie Lee Curtis with her short gray cut. My burn is healing nicely. In fact, almost can't tell I had radiation. I feel great. I'm walking 3-6 miles per day. I bought myself a fitbit some time back. I am getting the hair back on my bottom shelf. My nueropathy is almost completely a bad memory. I go back to my Oncologist on February 29th. He told me he'd monitor me via blood work. He did check to see if my ovaries were dead at the last visit, and they WERE, so I am on Arimidex as oppposed to Tamoxafen, and I am very glad. Yea me. LOL My son said to me, "It's very sad that you are so happy that your ovaries are dead, but I understand, and I love you!" I hope you ladies are doing well.

rainnyc

Finished rads right before Xmas and am waiting for the burns to heal. Hair is between and inch and an inch and a half, but I'm not giving up the wig just yet; my ears stick out too much. Eyebrows come and go; they fall out in patches. Still going for Herceptin/Perjeta every three weeks, seeing MO every 9 weeks. Status quo, and we'll see what the next few months bring.

Happy New Year to all!

sharapril1021

Happy New Year Everyone!! It's been a crazy couple of months and I haven't been on the boards until now. Let me catch you all up: I was suppose to start radiation on 11/30 but I couldn't get my right arm over my head so I ended up doing PT for 2 weeks and went back on December 2nd and FINALLY passed!! I started my treatments on December 7th and tomorrow will be treatment 19 of 28...can't wait for these 2 weeks to fly by. So far I have no complaints except for some itchness that I try not to think about.

Tomorrow I also go back to my MO for infusion (Herceptin and Perjeta) # 3 of 12. I'm not sure if I told you that after my surgery on 10/27 the tumor tested at HER2+ which that news was hard to take. The initial biopsy was HER2- so they didn't give me these drugs during my chemo since I was negative but now I have a year of treatment every 3 weeks. The plus side is that I haven't experienced any side effects with these like I did on chemo, so I am just dealing with it!!

Shanann - congrats on the completion of your treatments!! My eyebrows and lashes have all grown in but my hair is taking forever to grow it seems. Mine natural color was a dark brown but it's coming in mostly gray which I do not like at all!! Can't wait to dye it some funky color when my girlfriend comes back from vacation.

StefLove - I didn't realize you had your surgery the same day I had mine!! Your hair is growing fast. Mine is coming in and looks like yours but I have a lot of gray!! I can't wait for my girlfriend, who owns a salon, can do something funky with my hair color. My eyelashes and eyebrows have grown in as well. I am just waiting for my nails to get back to normal because they are still a little brown. Did you have to have radiation? Are you done with that?

Rainnyc - Congrats on finishing your rads. I am counting the days until I am done...but like you still going for Herceptin and Perjeta too! I have 4 more of the Perjeta (tomorrow is my infusion day) and then the rest is just Herceptin. I know my MO is going to want to talk about Hormonal treatments which I haven't given too much thought about because the holidays were busy for me. I'm sure he will give me more news tomorrow to think about.

CatsRus - congrats on the end of your treatment and good luck with your reconstruction. I opted to postpone my reconstruction due to radiation after surgery and now I have to wait until next year but I'm okay with that. My breast prosthesis should be ready for pick up sometime this week or next..which is a good thing!!

Have a great week and I wish us all a clean bill of health in 2016 and much love and happiness !!!

Peace and Hugs!!!

tjh

My brows and lashes are coming in very slow. My hair is 1-1 1/2 inches, a lot more gray than brown....also very slow since my last chemo was July. I still wear hats most of the time...but it is January in Wisconsin. Otherwise I am feeling good. The SE of Arimidex are doable since I switched to the brand name. Oncologist wrote the prescription brand specific so insurance covers it. I am glad we are doing better.