Starting Chemo in October 2015

Ag23 - I only has rashes right after my first round of chemo (allergic reaction to Neulasta they think) and then again after round 3 when I took and antibiotic that I also reacted to. I have a little rash on my neck now - 6 weeks post last chemo - but I attribute it to radiation and/or all the lotions I'm using with radiation. It seems very reasonable to have a weird rash even this far after chemo considering how much it messed up our entire bodies/systems. Good to get it checked though! My MO said side effects can happen for at least 6 months and it can take up to a year to feel fully recovered from chemo. yikes!

Meara - that is fantastic news!! I wish there was a way to know if I had cancer left in my nodes after chemo. Would've been nice not to have radiation. If your productive drain is getting progressively less, they may still pull it. Some docs don't want a drain in more than 2 weeks regardless since it is an infection risk. I so hope you get them out today!!

I've been going bald in public since November, but the henna pattern definitely made me feel even more confident about it...maybe because it was something I chose to do/controlled vs being bald which I could not control. My stubble is still disappointing so I'd rather just stay bald until it fills in (and try not to worry that I am in the 6-8% that doesn't get hair back). Wishing for eyebrows more than hair right now!! I only feel weird when I go clothing shopping...seeing myself in all those mirrors - bald, no breasts, scars, and now radiation burn. Thankfully I'm staying pretty positive! I need to get a new plastic surgery consult to discuss possible reconstruction options. I'm concerned because I don't have much body fat, and I don't want to gain much fat weight because it will be so hard to lose later (they only transfer from certain areas, so I'd have to lose again from the areas they don't use).

Happy Tuesday!!

Andra xo

Meara - I bet your other drains starts to taper. My second one took much longer than the first. Hooray for at least getting one out! My taste buds are still off too, but not bad. Food is tasting pretty normal, but I still get a funny aftertaste with certain foods.

I'm just back from getting my head henna'd again. I think I like this pattern even better than the first! Kinda wish I had gotten it done sooner - as in 2 months ago. I'll take some pics and post one later. I told the artist it made me feel more confident being bald in public and that made her very happy to hear. Who knows...maybe I'll do it a third time if my stubble still isn't dense enough. I'd have to see with my timing back to work on-site since it would not be allowed.

I'm trying not to think about the permanent hair loss stats, though I worry everyday that it is the case with my eyebrows. I think it is only a risk with Taxotere, not other chemos. I wonder where everyone else is with hair growth etc. ??? My eyelashes are still falling out (a few more this morning), which is also discouraging. Seems so late to happen, but I know I read about that happening on a another board months ago.

I think they may be able to use glute fat for reconstruction as well - which gives me hope of not having to gain much - but I know the preference is lower abdominal area. I barely have anything there (not enough to even consider liposucting), but certainly have some in thighs/glute areas. It has been much harder to lose and/or maintain weight over 40, so yeah...don't want to purposely gain if I don't have to. I may still be a candidate for tissue expanders followed by implants depending on how my skin holds up after radiation, but not sure I'd want to go that route. It was my original plan, but not I'm a little weirded out (for lack of a better term) about foreign objects/materials in my body again.

Hope your Wednesday is great!!

- xo

MDW/Andra, my eyebrow hair amd eyelashes fell out about 5-6 weeks PFC, then grew back literally within a week during week #7 PFC but it felt like overnight. Eyelashes are slowly coming but certainly not as fast as the brows

Meara - I so hope the drain slows down and you get it out soon. Don't worry about lymphedema because of the drain issue - this kind of drainage from surgery is not related to it. It is directly from the surgery site and you body can reabsorb many ml each day after the drains are removed. Lymphedema in the arm is an issue of not draining the fluid from the arm (or also chest area) that is regular lymph fluid that is always circulating. If you put a drain in a person's arm who has lymphedema it wouldn't make the arm drain. It's an issue with the lymph channels. Hard to explain, sorry if I am not explaining it well.

The implants they have now are so much better than decades ago. I still may consider. When it was my initial plan, I had chosen the 'gummy bear' implants and I think the sample they showed me was the smallest size and what I wanted....seemed very natural, and no risk of rupture or leakage of any kind of fluid. There would also be a little fat grafting about the implant to contour it better and not see the edge through my skin. I'd need to have TE put in and that is still a concern with radiated tissue (high failure rate). The plastic surgeon wasn't optimistic about that, but didn't completely rule it out. Trying not to think too much about it yet since any king of reconstruction steps are at least 5 months away.

I still have the new henna paste pattern on my head...going to see if I can leave it on an extra day instead of flaking it off today. I can't have this on my head at work because I'm in uniform - Commissioned Officer in the US Public Heath Service (one of 7 uniformed services: 5 armed - Army Navy, Marines, Air Force, Coast Guard, and 2 are not armed - NOAA and USPHS) and there are strict uniform standards. Our uniform looks most like the Navy but with different insignia. The Surgeon General is an officer in USPHS and wears our uniform. We fall under the Dept of Heath and Human Services. We can't have anything weird/odd for hair and it has to be pulled back/up or short enough to be above the shirt collar. I used to keep mine up in a bun. Beings bald, I would be allowed to wear a wig that conforms to their grooming standards but not a hat. Part of why I was bald in public from the beginning...not comfortable wearing wig and no other head covering options allowed. I did wear a little hat if I was cold at work in my office and no one cared...only about 25 officers at my duty station, the rest of our hospital staff are regular federal employees. I'm going to a USPHS conference in May and will hopefully have hair growth by then for some coverage!

Wow Kim! - Can't believe your eyebrows grew back so fast. Yay!!! Mine are not growing and it has me worried. Even the few lashes that fell out first (in round 1) have not come back and now so many more dropped off in the past few weeks. I'm even using Latisse.

So glad the week is almost over! Hooray for the weekend!

I'm on the winter Rads board, but it is hard to keep up with it. So many wonderful people, but it is overwhelming to stay on top of it and contribute.

bug hugs....

xo

Andra: Thank you for the explanation on the drains fluid vs. lymphedema! My doctors/nurses never really explained to me what the drains are and aren't supposed to accomplish exactly. My onc surgeon talked about the importance of movement and exercise post-surgery to help avoid getting lymphedema, but I made an assumption that keeping drains in was also to avoid it. But it sounds like the body can absorb a lot of the fluid post-surgery. I wonder why they'd risk keeping the drains in for > 2 weeks, in my case? The risk of infection would seem to outweigh the benefit of keeping them in. Anyway, I did make an appointment to get the second drain taken out tomorrow. It's weird--now there's hardly any fluid draining, after that small surge I had yesterday after I put on a snug-fitting sports bra. It's like a spigot just got turned off. Maybe walking is helping my body absorb whatever's left.

Wow, I'm not sure if I'd ever really heard of the USPHS! No wonder the strict rules around what you can/can't have on your head. I'm glad you can at least get away with wearing a little hat if you're cold in the office. I know that the thermostat at my work office is permanently set to "March of the Penguins".

I'm really sorry you're worrying about the possibility of your eyebrows/other hair not growing back in. I do understand the worry. I am keeping my fingers crossed for you that everything will start growing back soon. It sounds like you have had some regrowth on your head that you've had to shave in order to do the henna? I'm hopeful that that's indicative of follicles that are willing and able to produce.

I did another power walk today--and coming back up the hill was definitely less hard, again. It's good to feel like I'm maybe getting stronger. It was also good to just get out in the sun and enjoy the springtime exploding gorgeously everywhere. Starting to feel like I'm really part of the world again instead of one foot in, one foot out. I'm starting to feel like I can start looking forward to things again--like we're planning to get a dog in late summer or early fall (once I recover from reconstruction), and we're talking about a getaway somewhere for my son's spring break in April, and a bigger vacation some other time this year. It's been difficult to think about the future since diagnosis--there were too many treatment hurdles in the way, and I guess I didn't know when or if I'd ever be safely out of the woods....

xoxo

hi ladies!

Hope everyone's hair comes back quickly!

My prophylactic surgery that was scheduled for Apr 5 has been cancelled, as my surgery is elective and other urgent cases have bumped mine. It's ok, it just means that right boob will be accompanying my husband and I on our trip to Italy in May. I was hoping to not worry about being lopsided but whatevs.

An update on my post-radiation rash - i think it's getting better but what a long haul the past 2 weeks has been - itchy itchy itchy! The rash looks terrible, stopped using flamizine and am just applying a saline soak thrice daily as well as pure aloe vera and hydrocortisone when itchy. Cant wait for this to be done!

Durhamgirl, sorry to hear - may you have a better night than you think!

MDW, yes, it's quite amazing to be thinki g about the future again yes? I didnt think it could happen but am in full view of the light at the end of the tunnel, and I am sprinting towards it! Keep on healing girl!

Andra, hoping you feel good this week, and that your legs take you further than you thought possible!!!

All the best to all of you

oh Durhamgirl - I know how much pyogenic granulomas suck. Painful. I had to burn one down with silver nitrate a few years ago that was on the side of my thumb. Not fun. Hope you already have relief!! I had no idea they could also be a side effect from Taxotere...seems like Taxotere is the worst for everything, so harsh.

Yay Meara for power walking, getting outside, and having that last drain out today!! woohoo! Of course all of this can lead to a cancer induced mid-life crisis! Life from here on out will never be the same for us. We are changed...hopefully some good change even if the method/path was rough.

Sorry Kim that your prophy mastectomy was canceled for April 5th. Hopefully they will reschedule it for when you get back from Italy. Hope your rash calms down quickly!

Ran 5 slow miles with the dogs early this morning. Legs thankfully OK this week, just tired - I've been working out hard. Now I'm taking a break from work and heading outside to sit in the sun and peel/pick the henna paste off my head. Hoping to either hike or snowboard tomorrow with friends visiting from where I usually live/work in AZ on the Navajo Rez and some who used to work there but live here in Santa Fe now. We also have a great dinner planned at the best Indian restaurant in town. YUM!

have a super weekend everyone! xoxox

MDW i finished rads almost 2 weeks ago, but they say side effects can continue and get worse/peak up to 2 weeks past. Thankfully today I can say i am getting better, what a relief! I know what you mean about PTSD, it really is a condition that we face and have to get through - i wonder if counselling would work? I also am feeling different about my work, is it something i want to spend my days doing still or time to move on? Yes cancer-induced mid-life crisis.

Andra, yay for your legs better this week! Indian food, yum! My surgery is pencilled in for June 8, 4 days after we get back from Italy.

Durham girl, sleep, sleep, sleep!!!

FREEDOM!!!! No more drains. It is so good to have them gone.

Andra: I hope you're either hiking or snowboarding and having a great time! Indian food sounds yummy. Hmmm, I might just lobby my family to get some Indian takeout tonight.

DurhamGirl: I hope your thumb heals quickly--and good luck with your final zap on Monday. Did you get a good night's sleep?

Kim: Glad to hear the post-rads effects are starting to subside. I've been thinking about lining up some counseling to see if that will help me process what I've been through/am still going through. And also maybe to bounce ideas around re: what's next for me. I'm in a situation where it really behooves me to stay at my current company until at least next September, when I turn 50. My retirement benefit is exponentially better if I'm there until I'm 50. And I kind of feel like it would be dumb to walk away from that money. But I'm starting to feel like I need a real change soon. I was feeling that way a bit *before* the cancer, too, but now it's more acute.

Best of luck on your move today! That is exciting--a new beginning in the big city. That sounds fun. We live about 30 minutes north of San Francisco and we go there once in awhile, but there's a big difference when you actually live in it, which I miss sometimes. There's always stuff going on. Enjoy the new environment--and may your move go smoothly.

Not sure what the rest of this day holds for us. We went to my son's baseball league's opening day celebration. The fog has burned off and it's sunny and warm. I want to take a little hike, maybe. Happy Saturday, everyone!

Andra: Wow, you're close to that 20 year mark! Your plan to stick it out for 5 more years past that milestone makes a lot of sense, if the retirement benefit continues to improve for ten years after. In my case, although 50 is considered early retirement, there's not a big incremental benefit to sticking around after age 50. It's just a big loss if you leave before turning 50. I'm struggling with wanting to leave as soon as I'm 50 but knowing that it's going to be tough to find another job at age 50. And I really don't necessarily want to keep doing what I'm doing but for a different company...just don't know what to do next. Sigh.

Your health insurance is fantastic! No out of pocket in 18 years is really astonishing. Because I was always so healthy in the past, I barely gave a thought to the importance of having great insurance, but now it's a major consideration. And I can see where that would be a motivator to stick around until you pass the 5 years clear of cancer milestone. I'm thinking more about that myself--wondering about trying to make a lateral change at work to shake off the boredom and stasis, yet preserving the relative security of staying with my current employer and their insurance options. In my heart of hearts, I want out of corporate life altogether, but I don't know what else I can do that would replace the income and benefits. I'm the primary breadwinner at home, which makes it tough to choose anything that might reduce income or security.

I'm so sorry you hurt your Achilles snowboarding but I'm glad it's not so bad that you're completely sidelined. Yay for your sweet hike with friends on Saturday, and how cool is it that you had an archeologist friend along to add context? I went for a lovely little hike on Saturday, too, on a nearby trail. Not sure I covered a lot of terrain in miles, but I was pleasantly surprised that the uphill switchbacks didn't knock me for a loop. Slowly, slowly, I'm getting some strength and stamina back.

Happy Tuesday, everyone!

hi tkemp! Thanks for checking in! I am doing great! Definitely have had post-rads side effects but they arent too bad.

Andra, my move went super smooth and enjoying our new place so much!

Meara, hoping you find your place with work and a decision you can be content with

Hello everyone! We just got back from our 3 week vacation last night. I didn't rest as much as I had hoped, but we had a great time. I get my CT amd bone scan tomorrow. I'm not looking forward to waiting for those results. I hope everyone is doing well. It's sad to see that most ladies don't visit here anymore, bit it's so good that everyone is moving on. I hope you are all doing well!

Hi everyone!

I haven't been on any of the boards for a bit. Been busy with work from home, my Spanish class (so challenging post chemo), regular chores, and just keeping to myself.

Like Meara...I have a lot on my mind....about future, health, possible treatment/recon in 6 months, work etc.

I also went back to the Rez this past weekend since I didn't have Rads on Friday. Yay!! Was so nice to see people...coworkers/friends etc! Also nice to give my skin a 3 day break. It is holding up OK. I'm tired, and it is hard for me to admit that. going to be hard to go back to work on-site full time in 2 weeks. Thinking about starting with fewer hours and ramping up over a month.

I had a good 5 mile run yesterday morning despite my achilles issue. The first good run in months (where I wasn't frustrated and tearful). Hopefully there will be more like that in the coming weeks. My endurance and ability to push is quite low for me...but I'm still pushing myself like I usually do.

Meara - so glad you are doing well post-op and that you are out walking!! If you get the sports bras that have the removable foam triangles in them, you can layer up extra foam on the smaller side and it may help even you out. All I use is two layers of foam now for both breasts....makes me the size I was before mastectomy.

Keeping you in my thoughts homeschool - I know you are waiting for scan results. Keep breathing. I think the results will finally give you some peace.

Radiation is going by quickly.

xoxoxo

Hello Everyone!!!!!

I have not posted in awhile, but have been in this group since the beginning, and wanted to stop in and say "Hi" to everyone!

I have done four rounds of A/C, and today did my 11th treatment of Taxol. Next Tuesday is my last day of chemo!!!! I can't believe it. It seemed to go so slowly in the winter with the A/C, but weeklyTaxol really moves along quickly. I will meet with the RO in early April, and am looking to start rads at the end of April. They tell me anywhere from 4-6 weeks, 5 days a week. They will know more when they take a look at scans I have when I go in to meet them at the radiation center.

For anyone who from this group who has started rads, can you tell me an others in this group about the side effects you have had? I have read about the burning that will happen, but are there others? I think I have seen fatigue as a side effect also. I thought I would be getting rid of this when the chemo was done!

Also, if anyone has finished their chemo, what changes in side effects have you noticed? I have a rash that I can't wait until it goes away, and some neuropathy in fingers and toes, as well as the hair issue! Wondering how long before these subside.

Congratulations to all of us!!!! We have worked so hard this winter, and come out the other side in the spring!! Yay!!!!

Autumn, I had the same chemo as you, 4 AC and then 12 taxol. I am 4 weeks post final chemo tomorrow. I have more hair than I expected at this point. It doesn't feel bald anymore when I run my hand over my head. It looks pretty five o clock shadow-ish. I was worried about my neuropathy at the end, but it never got any worse and actually seems better already. Certain days my feet feel wierd, but not all the time. My hands are perfectly fine. My leg weakness increased for a week or so after chemo and then got better. It's only there a little now. By 3 weeks out, I was somewhat less tired, although I wouldn't say it's better by any means. My skin was really good on chemo because of the steroids. A week after my last treatment, my skin got really really angry at the lack of steroids and my face turned into a red, itchy swollen mess. But I had bad eczema before. The nosebleeds stopped a week out and the eye twitching gradually got better and I just realized I haven't noticed it in a few days. The diarrhea got better arpund week 2 or so. Hope that helps!