Starting Chemo in September 2017

OCDAmy

rlj, Ice is supposed to keep your mouth cold and help to avoid mouth sores.

I saw on the hair topic board that some women have tried aproduct called Essential Eyebrow Solution to try and save the eyebrows or at least help them grow back faster. I bought a bottle and it was delivered today. Who knows if it will work but it can't hurt.

Travel_Girl

toughcookie -- try healthjourneys.com -there is a healthjourney for chemo - just search for it the top. (my onc therapist suggested it to me - i am a visual person ) -- even if you just listen to the sample it might help. I HATE having chemo running through my body -- the one thing that i can say -- it wasn't as bad as I made it out to be - because they have meds that can help you with most of the SE's -- you just have to stay in front of things. You can do this.

I focused on it killing the cancer and it is my job to be healthy enough to repair the other things it takes down with it. Being so upset, aggravates your immune system and harder to heal the good stuff - so do whatever you can - including ativan to calm your anxiety -- you need your immune system repairing the good stuff not being consumed with stress/anxiety.

Now if only I knew if it was working on killing this cancer of mine - ohmmmm, ohmmmmm

OCD -- how did your MO determine it wasn't working that well? Scans or just feeling it?

OCDAmy

Travel Girl: I agree, chemo was not as bad as I built it up to be. My sister is a 5-year colon cancer survivor. She told me to visualize the chemo like a Pac Man gobbling up all the cancer cells. And yes, at first we were just feeling the tumor to see if it had shrunk and I could tell it had not. After 4 months they did another mammogram and ultrasound and it had not shrunk (didn't grow either). What a waste of four months.

Brightness456

I was told by my MOs that since my tumor was 5mm, I could do chemo/herceptin or not, although I must do radiation. I reluctantly decided to do it in case any cancer cells escaped. I don't want to risk it spreading. Now I'm wondering though if I really need all 12 weeks. I asked my local MO, who will be in charge of my chemo, and she said all tests that have been done have been done based on 12 weeks, which is protocol, so she couldn't really say if 4 or 6 or 8 or 10 would be enough to kill any stray cells. I know some people stop early because they can't tolerate the SEs, so I'm wondering if I just did some of the taxol, but all of the herceptin would it be just as effective.

Does anyone know of any studies done on effectiveness of reduced duration of treatment?

toughcookie_21

OCDAmy, it's funny you mentioned the PAC man analogy. Before I had surgery, I was imagining my tumor being like a PAC man eating all the hormones in my body and growing out of control. I never understood why they didn't put me on tamoxifen before I started everything.

Travel Girl, thank you for the suggestion. I've been meaning to look into some guided meditation but I will check this out tonight or tomorrow morning. you mention about being healthy and I can't agree more. I have always been really healthy, eating well and trying not to overindulge. what worries me so much is that the chemo could make me not healthy anymore. I hope it's not as bad as I'm making it out to be. I've always been a bit of a pessimist-expect the worst and be pleasantly surprised when it turns out ok.

Rljessu, I probably won't ever try to run a half marathon again. I will stick to 5k races and I'd like to do a tough mudder but my knees and back were a mess after the half and like I said it wasn't pretty. I was a hot mess coming to that finish line. I am not a great runner- I played soccer through college so of course I had to run for that, but I'm not a great distance runner.

I have not been working out since surgery. It's driving me nuts. I do still try to get 10k steps in daily, but its primarily by walking and I'm not getting my heart rate up. I have a treadmill at home and have jogged on it a few times, but my tissue expanders make that very uncomfortable. I heard that once they're exchanged for the implants, it will be much more comfortable. They're kind of like rocks on my chest. i haven't gained any weight but I've definitely lost muscle since June. I have done a few Yoga classes but have avoided the gym. I don't think I'll do either of those things during chemo because the gym and yoga studio are probably quite germy.

Going to try to get some sleep for tomorrow but it might be hard. The steroid has made me pretty wide awake and hungry!

Travel_Girl

Toughcookie -- I had the same issue w/ chemo - making me unhealthy. I spent hours reading cook books and healthy ways to deal with the SE's - the good news is the yuck days don't last that long and then the days you feel good, you can eat well, etc. Also, as it relates to the gym, etc -- I thought the same thing, that I couldn't go-- my oncology team said gym was fine - wash hands often and don't put your hands in your mouth, etc - and gym is fine, encouraged. It made my day when they told me that. I did opt out of my favorite hot yoga -- cause that is well - sweaty and germy - so I go to align and restoration yoga -- at regular temps

I am even part of study at the university associated w/ my onc that has a 3 month exercise program - so I am working out with a trainer at the gym 2x per week - program specific to those going through cancer treatment. they are gathering data on effects of exercise during treatment

Find a way to be as healthy as you can - take back your control. You can do this

PauletteK

Ladies you gals are great ! I have not been work out for weeks due to short of breath I can only do a short walk a day. Hopefully I can build my walk again after few days.

AC DD really wore me out just glad it is over now.

MzPriss

RLJ: I am HER2+ and doing neoadjuvant therapy. Chemo first, then surgery. I was also told after surgery I may get more chemo and may get radiation. I'll also get Herceptin for the next year every 3 weeks.

I'm the outlier with the chemo. I've had every symptom, adding in a UTI that has popped up yesterday and a bloody nose. It's been 100 times worse than I anticipated or was prepared for. Nausea, diarrhea, numb fingers, numb tongue, dry mouth and eyes, my hair is already fleeing. My first chemo was 7 days ago and right now there is no end in sight for my symptoms. Talking with MO today about it all. I'm taking a leave of absence at work to get a handle on this, I was unable to work this week at all.

toughcookie_21

msprizz, It sucks that you're having so many bad side effects. I remember reading that you had hoped to work through treatment. I'm afraid of the same thing. I also started a new job in April but I worked for the company for 7 years so I do have fmla and short term disability but it is a completely new department. I went from sales into marketing. I have been out since surgery and was hoping to go back after my first chemo and then just use pto for the rest of my treatments.

I hope you start feeling better

OCDAmy

MzPriss, I'm so sorry you are having such bad side effects. I hope it gets better soon. Are the anti nausea drugs not working? Do call your MO, they should be able to help.

JD_RN

Good Morning chemo peeps -

Just so everyone knows after all this cancer crap is over I'm quitting my day job and taking my medical humor on the road - oh wait I don't have a day job . . . I had been working to get back to bedside nursing (just had my 2nd shoulder surgery in 12/16) was cleared for re-hire in my old unit and I was so excited but oh wait . . . you have breast cancer! Part of my mission in life is to make people laugh - i used to make my patients laugh every day at least once even if it was at me because being sick and in the hospital sucks and I wanted to make it better for them. I try to have a good attitude but it's hard sometimes - especially the last few days which have been very dark for me. I suffer from depression and I have never been so physically and emotionally depleted - so I have been in hibernation. Had a telephone session with my therapist (same one off and on for 27 years and she specializes in cancer - who knew) last night at 8:30 and she let me know that I am doing exactly what I need to be doing to gear up for this next battle. You all should know that my therapist is my longest monogamous relationship - her and my firewood guy (20 years).

I was training for a marathon when this whole BC thing came up and I have not been able to run or lift at all since July 11 bc of one issue or another and now with the f*cking PICC I'm not allowed to sweat! I need something to channel my growing amounts of rage bc usually I would work out but can't do that right now - can you tell I'm salty about this? Its just one of the indignities that has accompanied this whole cluster.

I have an appointment today with my onc NP to go over the ins and outs of chemo - let's see if I learn anything I don't already know. I do know that my ID and MO have decided that I'm getting Neulasta right out of the box bc keeping my white count up is paramount given that we are still fighting the slime.

I will write later and address specific peeps - but I need to get some things done before I "hook up" to my IV abx for my morning dose - I remember when "hook up" had suck a better meaning lol. Here is my parting gift for the morning here is my before and after shots of my chemo cut - it was more emotional than I thought but I moved through it.

JD_RN

Here is the after

Mojojennijo

I'm supposed to start chemo in the next two weeks. I'm having clinical staging done first. All next week Tuesday so it shouldn't be long. Mo just wants it to pick the right meds and because of the size of my primary tumor and the length of time it's likely been there.

I really really wanted surgery first but I am not a candidate til I have chemo.

Glad to have this site to find out what's in store.

JD_RN

Mojo - why not a candidate? I'm thinking it's the HER2+ status and they are hoping to address any cells that might escaped before doing the surgery. Unless you want a lumpectomy and they want to shrink the tumor. Here's hoping you get some good answers!

JD

OCDAmy

Looking good JD! Keep the humor coming, it brightens my day. I am on day 14 and my hair is still hanging on really well. Still a little shedding but really not much.

Was telling someone yesterday that didn't know already about my breast cancer. I struggled with what to say re: DO I have breast cancer or DID I have breast cancer? I keep thinking that since the tumor is gone with clear margins and the lymph nodes are gone and I had a CT scan when I was diagnosed that showed no spread of the cancer...doesn't that make me cancer free and I can say I HAD cancer?

JD_RN

Amy - I am hoping your hair hold strong and it will talk to mine and tell it to do the same! That is a good question - I find that it's easier to tell people I am going through treatment for Breast Cancer and then when you are finally done with your treatment you can transition into being a Survivor. That way you don't get into the weeds with the have, had, i don't know maybe there is a cell. . . that's way more than people not in this circle need to know or would understand - hope that helps!

Need to go get ready for my appointment which includes shaving my legs etc - something perhaps will be a nice side effect of chemo - there I found a positive today!

Stay strong my warrior friends - JD

toughcookie_21

JD_RN, I LOVE the haircut! You wear it so well. I'm cold capping and the caps don't quite reach the nape of my neck. I think I have a rather oblong head. I told my husband that I'll just shave the underpart of my hair if I lose it. I just don't want to lose the hair on top of my head.


I get it about not working out. The last really good workout I had was the day before my mastectomy. Then I got an infection around one of my tissue expanders and ended up in the hospital a couple of weeks ago. I had just been feeeling like I could go back to the Gym and then I got the infection, then I got the port surgery and now I am getting chemo. The weather is perfect right now to be hiking and biking. Hopefully I'll feel well enough between treatments to try to do some exercise.

MzPriss

OCD, the meds just take the edge off.

JD: Love the hair and your humor...and I can't help but notice your star. Are you too a MoT?

I have to brag about my DH. He's been amazing. Short story: We were in a really bad place in our marriage last spring. That's when I initially discovered my lump. However, I ignored it because we were in such a bad place and I was actively looking at places to move out. I couldn't do both. We worked through it...and then my cat died of mammary cancer. Light went on...I had better address this thing. He's a social worker and has to deal with the ugly of people's lives all day long...and then come home to me with every side effect on the list...and he has been amazing. This morning he ran to Walmart before 6am to get me a heating pad....all before his hour commute with his surly teenaged daughter (who lives with us). I might have the suckiest of s/e but I have great support and am so glad we worked through our mess. We can't do this nonsense without great support, and I am blessed to have a DH who has been a rock and a large circle of friends to pick up my slack....not to mention a really understanding employer who although I don't qualify for FMLA is supporting a leave of absence without fear of losing my job.

Okay, enough of the sappy. Time to get a protein drink down and attempt one more day at the office sorting things out before I go on leave.

JD_RN

MzPrizz - oh yes MoT all the way - my son is preparing for his bar mitzvah - so I am the heavily tattooed nurse lawyer lesbian jew with BC - I love that your DH is awesome - I have some serious stories about my wife - let's just say she is moving out tomorrow - this is a long story but it's the best thing for me as she is verbally abusive and a heavy drinker. But let's not get into that now. . . I have got to step away from the computer and get moving!!!!!!!!!!!!!! xoxo JD

Travel_Girl

Today I am frustrated! I had another surgery consult, and although the surgeon is right, I did not want to hear what she had to say. Ughghg! Ok, I will get over this, I have things to do. Just back from the consult and holding back a few frustration tears - thankful for my work deadline, that will force me out of thinking about it for now.

Short story - not a great candidate for DEIP because I don't have enough 'fat' at the donor sites, it would have to be multiple sites to build back two breasts. Even if I try to gain 10-20 lbs in 2 months, apparently I would need to gain 40 pounds. Her words, big surgery and I don't think you will like the result - small bumps and an additional big scar higher up on abs than others, to get more fat.

Implants are a better options, except I have a radiated side from prior bc, which makes is riskier to 'take' and/or hold the implant. Your own fat is better.

Option 3 is to use my fat to build the radiated side and an implant on the other -- so the worst option of all - scar + an implant + longer recovery because of 2 surgeries.

Ohmmmmm... I will get my head around this over the weekend. Today, back to work.

PauletteK

good morning ladies, so much to catch up, JD nice buzz one less thing to worry now. Great humor you got, we all need it now.

MzPrizz - its good to have all kind of supports!

ToughCookie - need to live up to your name 💪

ODC - don't worry about cancer or not now, we just deal with the chemo then we will be cancer free

hopebringscourage

I had my port placed today -quick procedure but WOW I have a major headache. I hope this goes away or my last week before chemo starts will not be fun! Feeling a little bummed out right now-mastectomy side still hurts now the opposite side and a headache. Well atleast the sun is out:)

toughcookie_21

I had my first chemo today and came home and fell fast asleep. I feel very tired and fell asleep right after coming home. Now I woke up, 7:30 eastern, and went to the kitchen and nothing looks appetizing so I'll go back to bed. I have been drinking lots of water and DH made me some chamomile tea. Just not hungry. Will post an update tomorrow if more se's present themselves.

I am going to try to make it to my children's soccer games if I have enough energy tomorrow morning.... we shall see.

On thing I will metion- have your doctor write a script for EMLA cream and put a dollop under some tegaderm or Saran Wrap about an hour before your blood draw or chemo. It makes accessing the port virtually painless. I'm so glad I asked for it.

hopebringscourage

Thanks for the update toughcookie!! I start my 1st chemo next Friday - it will be nice to have some friends here to compare SE with. Did you ice your feet and hands? I hope you are able to make your kids soccer games- my daughter has 3 this weekend about 2 hours from home..I am not up to the ride I'm so sore from port placement.

Happy Saturday everyone!!

toughcookie_21

Well, I guess these are the first side effects. I was up in the middle of the night with the big D. it finally stopped around 4 am, but when I got up this morning, I had to run to the bathroom with it again. I have no appetite. Everything in the kitchen looks gross to me, but I got my meds down with some jello. My face and chest are still all red. I didn't go to the soccer games because I didn't want to be too far from the bathroom! I hope this doesn't last too long.

Hopebringscourage - you'll be glad that's you got your port put in a week in advance! Ask for emla cream from the MO and it won't hurt at all when they access it.

PauletteK

ToughCookie did you take your Imodium? When I took mine it stopped. I lost my appetite on few days after infusion especially day 3- to 6.

toughcookie_21

Paulette, I think I'm going to send my husband to the store to get some immodium! I can't believe how quickly this came on.

PauletteK

ToughCookie - I stock my Imodium once I go to restroom three time I know Big D is here, drink plenty of water now, have some hot tea.

OCDAmy

Travel Girl, I am sorry that you don't have good options for reconstruction. What would be the problem with putting the implant in your previously radiated breast? I am going to have radiation to my breast and still have implants.

Tough Cookie, hope the immodium helps, I know it helped me.

It is interesting how different chemo drugs affect us differently. I find that I am hungry all the time, even after the steroids! Trying to be careful

Hoping all of you affected by the hurricane are safe.

PauletteK

OCD - I heard some of us gained weight on chemo but some of us lost weight. So far I only lost 4-5 lbs and I think I did well. I just hope I won't lose much weight on my 12 weeks taxol.