welcoming your experience and feedback...grateful for your time.

Limonia

Hello everyone,

This is my first posting on this excellent site.

I must admit that I am feeling discouraged. This has all come as a very big shock. No family hx, clear scans from Jan/Oct 2016. I was dx (unusual presentation, in both breasts) late Feb 2017, had surgery (double Mas with TE) in April and am 3 + weeks post op. The good news - my surgeon said that they got all the cancer, and I am grateful for that. Tumor(s) was smaller than they thought they would be, and although sentinel positive under one arm, the other 2/3 nodes they took out came back as negative.

The unexpected: My wounds are not healing, there is necrosis. Fill delayed, but more than that (OMG the pain from expanders!) is that it looks absolutely out of a terrible 'pre' photos of PS tv show gone wrong. My PS has a great rep, and I have daily bandage change, but it's not only the tissue necrosis, but one of the breasts looks like it's folded into itself (sorry for the details...is that ok on this board)? Also, my mobility on arm with multiple nodes removal is not improving past first week.

The very upsetting: because of the multi centric nature of the cancer, types of cancer, and sentinel positive, there is an increased chance or nonoccurence and they are recommending full treatment: chemo followed by radiation followed by hormone therapy for 5 years. I had not even imagined this. It is feeling very overwhelming, with chemo at the forefront, as they would want to start within the month, depending on wound recovery.

There are too many questions to ask, so I will start with this:

*****Has anyone gone through FEC-D Tx? If so, any advise, recommendations, experiences or 'heads up' you may share? Any questions for my dr you would suggest, or steps I should be aware of?

Hair: I will read the other posts but I have long hair for past 20 + years and it grows very slowly. It is of course devastating that I will lose not only my hair on head but eyebrows and lashes. I'm not sure how I will cope, especially going through hot canadian summer - wigs are not ideal, and aside from all of that, very scared I will have no reprieve from looking like I'm going through chemo with anyone I see knowing this....meaning, I will not be able to go even to pick up a coffee without having others know what I'm going through...even post surgery, I'm not fully mobile, am in pain, etc, and not looking great, but have moments where I can keep that to myself in the outside world....Any suggestions or experiences with how you navigated through these challenges?

What helped you get through this next period of chemo...how does one balance the need to be alone and hide (and rest when needed), with the importance of not withdrawing from the world? I'm particularly concerned as I am single without children, and so it's harder to have another central focal point that will daily 'pull me' outside of myself and engage me. Rather, requiring me to actively make constant plans and reach outs, when I will likely not have energy for this.

Anything that any of you might share about any of the points above would be greatly appreciated, like I said, I'm feeling discouraged, and taking the opportunity to reach out and learn from you...for the process ahead and also to help prepare me for the appt next week with the oncologist who will be discussing timelines.

Thanks so much,

Amy

Hopfull2

hi limonia, sorry you have to go through this and having to under go chemo. I finished chemo 2/23/17 and that was something I never thought I'd get through. From the beginning of this I told myself anything but chemo. But because of my high onco score I needed chemo. I must say it was no walk in the park but it's def doable. And that's that's I have 2 small children youngest is 2. The first 3-4 days will be the worst after each infusion but even then it's doable. If your looking into keeping your hair you might want to cold cap. I cold called and kept 60%of my hair. There is a cold capping board on here too. Just stay positive and there is light at the end of this.

Hugs.

Felloco1

hi there Limonia

I hope my insight helps reassure you it's doable.... remember we are all here going through this together so you are not on your own.

I am just over halfway on my chemo treatment... I had multiple tumours/ triple negative in one side & dcis no clear margins in the other so had two mastectomy ops pre Xmas and started chemo in the new yr.

I am on FEC T 8 cycles 1 every 3 wks . ... here a little of my experience I hope it helps 😀.

FEC ... first 3 mets by cannula....it doesn't hurt .... generally I was nauseous on the day and a few days after...they give you lots meds / steroids to help all of that which it did. My treatment is on thur & usually til Monday all normal then mon through to following Thur very tired / aches etc as expected. By end of the week start to feel better ....this had followed the same pattern for the last 5 cycles number 6 this wk so you might find similar in that you know the days you won't feel so good and can plan around them.... usually first 7 days are the ones with side effects after that you get better everyday up to your next cycle.

The first cycle is a watching game to know how you will be I kept a diary each day of side effects so I could know / plan for next rounds and really helped and kept me sane weeks on when I checked back to know what I was experiencing was the same as before ! The T cycle has been similar just slight differences in side effects.

As ever there are ups & downs days .... but it IS Manageable I promise !

I lost my hair by cycle 2 ... emotionally that was my worst week in the whole time and I was not really prepared for it ( thought I was ! ) ... but it gets better I am ok with wig and beanies while I need them and I now have short stubble growing back ! ...even though I am on cycle 6 which is quite common I am told.

I only told people who needed to know... most folks day to day don't even know what's going on with me so it does allow me to be anonymous... I didn't want the simpathy looks. Wigs are pretty good these days my hair was short before so I got my hair stylist to photograph it and we picked styles on wigs that were close. My friend from the support group totally changed here look and it's great! So maybe thinking ahead on this one my help you be prepared.

I like to be active so that's been my sanity release... walks and runs when I am up to it helps the mind and body and lets me think & get rid of the stressful thoughts.... find whatever works for you or try something new.

My tips on getting through:

Drink plenty of water it will make huge difference to how you feel and how your body cleans out the chemo.

Eat well / little & often works for me ... but just ensure you eat as the energy levels need food to stay strong.

Boiled sweets / gums get rid of the horrible taste from chemo.

Lots of fibre ( or senacod/ moviolal ) around the chemo week as the steroids/ chemo really messed up my digestive routine.

Protein shakes help when you can't really face too much food.

Soups / ginger cake / biscuits/ yogurt/ bananas are all on my ok list .... some stuff you just go off for some reason but I just go with it. Whatever you like eat it 👍

The team looking after you are a big important part of the journey so use them for support and advice they know every detail of chemo and how to manage it as they had done it so often and they have meds to help with all the side effects.

Surround yourself with people who care about you ... they will invaluable . There are lots of forums and support groups ...use them as you need .

Remember every chemo is helping cure you so try to see it as positive as you can ... I know it won't always be easy to do that.... just take every step & stage at your own pace ... give yourself a break also it is tough so don't be tough on yourself.

Stay off dr google it's not always that helpful ask your Qs to your medical team or on here .

I try to move on quickly when I get worry thoughts ( its nature to worry about what ifs) I have decided I try and kick out worry thoughts with good ones ... otherwise I will drain myself unnecessarily.

At the start it feels like a long road ahead ... every week is another step forward for you ... getting a plan , starting treatment.... I was diagnosed in October 16 ... I am now 6 wks from my last chemo thank god ... with radiation I will be through it by July.... you Can do the same set same small targets along the way .... each one you reach is a huge achievemen

I Hope everything goes well for you on your appointment.... let us how it goes .... remember we are all here for you 😀👍 x

Limonia

Wow, thank you so much for taking the time to reply to *all* my questions, I would have been happy even with one of them :-). Your shared experience and recommendations are invaluable. It is hard to see how I will get through this, however you have definitely painted some marks on the way that I can be on the loookout for and prepare for. I'll also keep a list of symptoms from the beginning - great idea. Thanks again Felloco1!

Felloco1

you are welcome ... my best wishes for you and I hope you call on us for support when you need x

ruthbru

Hi Amy, here are some of my thoughts.

1. Chemo: I did a different chemo regimen but did dose dense every two weeks with Neulasta shots. Dose Dense because I wanted to get it over with as quickly as possible. I don't know if that would be a possibility for you or if it's something you would even want to ask about. I liked getting Neulasta shots (which you have to do if you do dose dense, but I was glad to have them because it kicked my white blood cells into production so that I didn't have to worry about getting sick and could pretty much live my regular life (I didn't feel great, but I didn't feel unbearably awful either). Some general chemo tips:

*get a dental checkup before you start, get your teeth cleaned etc. so that you don't have any unexpected dental issues to deal with while on treatment

* Dove soap is the mildest, Biotene toothpaste & mouthwash are very gentle on your teeth, you might want to keep your fingernails and toenails polished as that keeps them stronger.

* drink lots & lots of water, take the anti-nausea drugs exactly as directed, get a number to call if you have any problems, if they haven't talked about it, I would seriously consider getting a port to protect your veins.

2. Hair:

*Use Nioxin shampoo, conditioner & scalp treatments for chemically treated hair while on chemo (even when you don't have hair, your hair follicles are being chemically treated from the inside out!), after chemo switch to the Nioxin for regular hair until your hair is coming in nicely, then switch back to your regular hair products.

*you might want to switch to a shorter style right now to give you and the world time to get used to a shorter look,

* there are some really nice, light-weight wigs out there. If you want to go with one, go to a salon that does that kind of thing and have them work with you, there are also nice scarves and also hats with bangs which make you look like you have hair. I guess I am pretty vain because always wore my wig in public (which looked totally natural.....actually nicer than my 'real' hair).

* I don't know if the American Cancer Society has a 'Look Good, Feel Better' program where you live; but if you can get to one, they show you makeup tips, hair tips etc. Nowadays, you can probably find clips on utube about all that too. Weirdly, I didn't lose my eyebrows or lashes until two weeks AFTER I was done with chemo (this happened to another friend too). They grew back quickly, but I drew on the eyelashes & being it was summer, wore sunglasses whenever possible! Big earring, red lipstick, bright clothes can all take the focus off the eyes.

Balance: I kept working, which not everyone can, or wants, to do. But I felt like I would go crazy if I just sat around thinking about cancer all day long. Whether you work or not, have a schedule and plan to do things (you can always cut it short or call something off if you feel crappy, but generally you feel better when you are out doing things).

* I did accept all offers to bring me meals, do errands etc. This is a time to say 'Yes' to help. You could tell your friends that you want them to ask you to go out for coffee, a movie etc. Explain that you might not have the energy to make the plans but would love to be included. It's okay to tell people what you need right now. I also hired a cleaning lady!

* I kept exercising (at a reduced level). Even if you can only do slow walks....anything you can do now will help you bounce back more quickly and thoroughly once you are done.

These are some things that helped me. You are in the hardest time; once you have a plan in place, you just do it and get it over with. Hang in there! Ruth

Limonia

ruthbru - thank you for your encouragement and sharing your experiences. All noted and I'm keeping a list of all of this! Coincidently, I'm booked for a look good feel better tutorial later this week in Ontario. Making my shopping list with the suggestions, and still pretty freaked out by all of this... Seeing my dr tomorrow to discuss further, so this all helps...thanks again

ruthbru

Good, I am glad you are doing the Look Good. They will give you great tips (and free makeup!). Let us know what your doctor says. It is absolutely normal to be totally freaked out. (I couldn't sleep at all; so another tip is, if you have the same trouble, ask for a prescription sleeping pill. They really helped me cope with the whole thing.)

Midwest_Laura

Hello, Limonia.  Sorry that you have to be here, but you have come to the right place. 

I had DD chemo, although it was a different flavor than you are getting.  I was able to continue working near-full time.  (A few days might have been a bit short, but basically full time.)  To add to that, I was able to keep my travel schedule for work.  I fly out to my client every other week.  My MO scheduled chemo to be on my "home" weeks.  As RuthBru indicates, Neulasta gives you the confidence to face the world without picking up every little bug.  Keep the hand sanitizer handy, and you'll be fine.  The diary that Felloco suggests is also a great idea.  It will help you predict your personal schedule of feeling crappy / poor / blah / not too bad.

You are right that the hair issue makes everything public.  You will have to find your own comfort place.  I bought wigs, long scarves with cute ties in the back, beanies, and simple bandannas.  I finally settled on the simple bandannas because they matched my casual style, then I bought them in lots of different colors and patterns.  You will need to find what works for you.  This is a very personal and individually unique decision - with influences from the weather.  I suggest buying a few inexpensive options and try them out before making any big investments.  If you think you might go the wig route despite the heat, take a clip of your hair now and save it.  This will help the wig shop to know the target color, texture, and length. 

I'm a few weeks PFC, but I still need to draw on my eyebrows.  It took some practice, but I can do it in less than a minute now.  (I practiced while I still had eyebrows to compare.)  I bought false eyelashes, but haven't used them.  I find that eyeshadow and eyeliner are enough.  Do I look like a Cancer Patient?  Yeah, I suppose so.  But for casual "grocery store" contact, no one seems to notice.  You would have to really inspect my eyebrows or check to see if there was any stray hairs sticking out from under my scarf to make the determination.  From a distance, I just look like someone who didn't bother to do their hair in the morning and just wanted to cover it up with a bandanna. 

I understand your desire to hide from the world until this is all over.  I think that we all have those feelings from time to time.  But this is going to be a long journey - not a 2 week stay-cation.  As with any serious disease, we discover a bit more about ourselves during the process.  Now is your time.  You need to find something on which to focus.  If you are working, that's an easy answer.  During chemo, I basically woke up, went through my morning routine, went to work, came home for dinner, watched an hour of bad TV, then went to bed.  There wasn't time to think about much else.  If you are not working now, then I suggest finding a new "work".  Spring is here - how about some serious gardening or spring cleaning?  Something with which you can pace yourself and sneak in the occasional nap.  It really doesn't matter what the distraction is, it only matters that you find one.

Hang in there, Limonia.  You'll get through this.  There are plenty of great women (and men) on this site to help you.

Limonia

Thank you Hopfull2 - for your kind words and inspiration. also fabukous to hear that you kepy so much of your hair - which cold cap did you use?

Limonia

Midwest Laura - I'm so glad that I scrolled up before closing for the night. I can't tell you the different that hearing from you and and the others have made for me. I have lovely friends (and my family live in different cities, but call all the time :-)), however there is something very unique and powerful about hearing from you and others who have gone through this/are going through this - thank you for the support.

I agree that it is different when it's a long game and not 2 weeks, and I can't sequester myself for 4+ months! At this time I will likely not work, I'm still recovering from double mastectomy, and the tissue is taking longer to recover...however it absolutely highlights the need for me to find 1-2 key things to focus on for when I have the energy. Thanks again and I'll update soon.

Night night all :-)

Hopfull2

I used penguin cold caps. Wishing you a speedy recovery.

DodgersGirl

Limonia- great advice from those who replied to you. Hope you find help as you travel the path to kicking cancer's butt.

I wanted to post that I also had long hair at time of dx. Had long hair most of my life. But knowing my hair would fall out from AC +T, I cut it really short like a man's cut But before I cut it, I found chemodiva dot com. Where I could send my hair and get a halo wig that you wear a hat with but it's your hair. It is expensive but I liked the idea of shopping and dining and looking like me. I don't have mine back yet but if you are interested I will let you know how it worked out

Limonia

Thanks DodgersGirl - checking them out :-)

Limonia

Thank you everyone again...I've just come back to reread all of your posts. My chemo has been delayed bc of wound healing. Booked for 1st week of June, fingers crossed wound is healed! Thanks again for your suggestions and encouragement...