Starting Chemo March 2015

Carrie37

Whitney, I'm sorry you have to worry about work on top of everything else. Another layer of shit on the sandwich which just isn't fair. In my area there is a "cancer resource center" and all services are free including individual counseling. Hang in there--we're all thinking of you!

Carrie37

Update on my drivers license: I called first thing this morning and they were able to email the letter to me so I could renew online. I'm driving on an expired license until the new one arrives in the mail. Please don't call the police on me! Ha!

Trvler

We won't tell, Carrie.

SueH58

Tyler, I'm so glad all your tests are showing improvement, although I bet you feel you've aged 100 years through it all.

Whitney, I am so sorry for your struggles. How long do you need to be employed in order to utilize FMLA. It's a shame you aren't able to utilize "me" time right now.

I had treatment #2 today and am surprised that the fatigue set in immediately. Came home and slept for 3 hours. Gotta stay awake so I can sleep tonight.

Jackbirdie

Whitney- I wish I knew what to do or say to make it better. All I can do is send my bestest thoughts and a hug. 💞💓💞💗💗💗. I know things will get better.

Carrie- great news! Glad that's one irritation gone! You needed to win one for a change.

Allison, a good news bad news kind if day. I'm sorry about your lunch. I would have been very disappointed.

Sue- glad you made it through, I know you weren't looking forward to it. Hopefully you'll sleep well tonight and not suffer too many SEs. No fair the pain started early! We're supposed to get a couple of freebie days before day 3-4 kick in.

rleepac

Follow up on my GI visit. Sorry, I was so pissed off that day because it took me over 3 hours to see the Gyn Onc.

Anyway...yes, I have an anal fissure which is a tear of the anal tissue near the sphincter. BM's with any bulk (anything other than watery diarrhea) causes severe pain - like pooping shards of glass. The pain lasts for several hours - sometimes all day.

What to do for it? Not a lot since I'm still on chemo. But to treat symptoms it is recommended to do warm baths a few times a day to relax the pelvic muscles and promote blood flow, NO DRY WIPING. This is key to controlling the pain that persists after a BM. Flushable wet wipes are a godsend. Keep stools soft (yeah right - like I have much control) and use fiber to regulate if needed. There is an Rx topical cream that helps stimulate blood flow but it doesn't do much in the way of pain control.

If it persists after chemo there is a laser surgery they can do but it has it's downsides of course.

Hope that helps someone!

Bekah

Jackbirdie

Oh Bekah! So very sorry! And that there's not much help they can offer you right now. After all you've been through, tohave this on top of everything else.....I just can't imagine. Directing positive thoughts to you now..

SueH58

Bekah, that must be some fissure if they're tossing around the "s" word. I had a fissues YEARS ago and it healed itself. Hoping yours will do the same once you're back to more normalcy.

Hugs!

SC_Coqui

Hopefully one of you can shed some light on this. Yesterday I noticed some bumps on my face. They're not red, just a bunch of bumps. Pic below. I'm also getting bumps on my fingers that sort of look like warts. They itch like crazy. DH says mosquito bites but I know what those are like and this isn't it. I'm thinking reaction to the Taxol? Does anyone know of something I can use to relieve the bumps or itch? Tomorrow is my third session.

Face bumps:

Bump on thumb:

SC_Coqui

Just to add, the face bumps don't itch. Just the ones on my fingers.

Jackbirdie

Joanna- I cannot claim to know, but I think I might try some topical Benadryl cream or something in that category, at least on the itchy ones. It sure sounds like yet a new SE has been discovered?

Since your MO office is closed and it doesn't seem an emergency I would try that, and call MO in the morning.

Maybe Bekah has an idea.

Theresa will just tell you to put coconut oil on it, haha. I might try a few drops of tea tree oil mixed with coconut oil in fact. It is a natural anti fungal tincture from Australia. Available at most pharmacies, some high end markets in health section. And safe to use on skin. I treat cuts and bruises and under my fingernails and in nail beds to try to save my nails during chemo.

Good luck. How's your son doing???

SpecialK

For anything itchy I would take oral Benadryl also, but maybe clear that with your MO first?

For anyone who needed the video about how to make a mastectomy bra out of a regular one, here you go:

http://www.whatididtosurvive.com/2010/05/03/mastectomy-bra/

 

SC_Coqui

I have some benadryl creme I'll use on my hands. I'm going to ask them tomorrow, especially with the strange bumps on my face.

Katy, my son is doing really well. His behavior has improved a lot. He's been really sweet lately. Today was rough, I'm not sure what has him off sorts. But DH and I made sure to make him understand that the things he has are a privilege not a right, and that he gets privileges based on behavior. Hopefully he'll get back to normal tomorrow.

Italychick

SC, Coconut oil doesn't work too well on my face, kind of breaks me out. Your bumps look like an allergic reaction to me. Hopefully your MO will have insight.

Bekah, so sorry about the anal fissure. There I definitely would use coconut oil! I use it on my butt all the time.

Meme117

Whitney sorry your having a hard time, hope the work thing works out, health first.

Carrie great that they emailed you a new letter.

Bekah sorry for your situation sounds so painful and on top of all the chemo shit, hugs to you!

The feel good workshop was ok, not a very lively group. Received some great makeup, good makeup and makeup I'll give to my sister. I'm a girly girl so I have more makeup, lotions, brushes, polishes than a neighborhood drug store, but it was nice and I was able to see the local hospitals cancer center, it's very nice. They have some activities there and I don't have to be a patient, support groups and such.

My painful tooth has an abscess where the root canal was done so need to check with MO first and if ok see the endodontic specialist😢 when it rains it pours - right???

I didn't get a chance to mail the bracelet to Theresa but I will tomorrow. Hers to a peaceful night of sleep for all

IndyGal35

Thanks for the update, Bekah. That sure sounds like what I'm experiencing. I'll try the tips your doc gave you as well as the coconut oil to see if that helps. The NP wants me to see a specialist if it keeps up due to risk of sepsis from fecal-blood contamination. Yay! Like I need another concern.

Whitney, I sure hope your company does right by you. I believe you need 12 months under your belt for FMLA, but I'm hoping your co-workers can donate some PTO for you to get you through the end of chemo. It is INCREDIBLY hard to work through chemo, and it gets even harder as you move along. You've come so far. Easier said than done, but you should be applauding yourself right now instead of beating yourself up. Be kind to yourself today, and go get some Panera macaroni & cheese. Sending love.

Allison, glad the clot is shrinking, but I'm so sorry about the delays.

It's been a rough week for many of us. We need cookies. STAT.

Carrie37

Why can't I get a good nights sleep the night before infusion?!! Why, why, why?!? And I woke up in the middle of the night despite Ambien. I swear I felt like I was having a heart attack because of chest pains but they went away. Can we say stress? Ugh.

Beachbum1023

SpecialK, thank you for the video! I hope it helps, I hate to give up all the "pretty" bras. And since I no longer have twins, trying to dress with one is a real pain. Thanks, Cheryl

molly1976

Joanna, I don't have the bumps on my hands but my face has been a mess in a wide variety of ways since I started. I think it's the steroids. I tried a topical antibiotic cream but that dried it out and caused the whole lower half of my face to break out in tiny bumps and whiteheads, so I have quit that and am just moisturizing the hell out of it and resigning myself to bad skin for the next few weeks.

Jackbirdie

Maryellen- drag about the tooth abcess! And too bad the LGFB wasn't that great. As you said at tleast there was some great free stuff!

Indygal- very sorry you are suffering the glass shards too! I hope you can get some relief without anything drastic. Wishing the same for Bekah. I thought your post was very nicely said. I agree with what you said to Whitney, and that we all need cookies. I hope you are settling into your new house well.

Carrie, do you take steroids the night before the infusion? That plus stress and anxiety will surely make sleep difficult. Maybe you can nod off a bit during the day in the chair. Which I hope goes smoothly for you today.

Molly, so sorry about the skin issues. Like the whole hair thing, it's another outward sign to remind us, and the world, what we are going through. But we know this will go away, and you will be dazzling again soon.

Eileen, I used to knit, and after several more mentions of the knitted foobs, I ordered a new pair of girls, to be used on those occasions when I want some piece of clothing to hang right if I'm going out. So far I've never worn the genie bra with the nerf balls "out", but since I have two if these light bras with pockets for a prosthesis, I might as well be prepared for such a day, if it ever comes.

This morning, thankfully, and finally, I finally feel "different" like I am truly getting better. Interestingly, this has coincided with the first of my bloody noses, but I'll take it. The congestion and death rattle are much better. Granted, it's still morning, and I usually feel worse later when it starts to break up, but I slept well, and just feel better. I go in for blood work today, so they will listen to my chest again and hopefully confirm my suspiscions.

IndyGal35

Katy, are you still able to cough up sputum? If so, your doc should really order a culture and susceptibility for you. It's not good to keep you on rounds of antibiotics that may not be as good as others or may work better in tandem. Our poor immune systems are busted up enough. We need all the help we can get!

Jackbirdie

Indy- they did a culture last week. I still do cough up significant sputum, but I'm hoping today will be better.

They originally ordered Levaquin for me, but I've heard so much scary stuff about that drug (FDA black box warnings, deaths, etc) and that may have been a better drug for this. But I refused it. In the end they gave me a zpac, which I finished days ago. I doubt very much they will put me on another one today. When I called them Tuesday they said if I had not improved at all or was worse, they might order another antibiotic. But I think they will view me as much improved. Maybe they'll do another chest X-ray to confirm

I have chemo #5 a week from today, and am really hoping for no delays because I want this OVER WITH. I want to ring the bell too.

slothabouttown

Good morning everyone,

Do any of you know when it is customary to start the tamoxifen after chemo? I left my last Infusion 2 weeks ago with the plan to start rads next week but with. no word from my MO about where the tamoxifen figures into the plan. I'm wondering if I should call or just wait to hear from her.

molly1976

I will not start until after radiation is over. I know some MOs like to start concurrent with radiation, though. I'm guessing if you haven't heard anything yet, your MO is more like mine and wants to wait.

eheinrich

My MO said usually about a month after the last infusion for tamoxifen.

I go today to get fitted for a compression sleeve. Mostly just to use when flying. Just another item in my beauty bundle along w my bald head, one boob, watery eyes.....

SueH58

Katy - SO HAPPY you're feeling better!!!

Slough - I think tamoxifin doesn't start til you're done with rads.

I may have mentioned I went to Soma for a new bra for my perky new girls (who both received reduction and lifting). Disappointingly, I wore the new bra for a few hours and now I'm sore along the incision line. Back to the sports bra.

Day 2 post-chemo not too bad. Still a bit fatigued, and some nausea, but not too bad.

Hope you all have a great, low SE day1

slothabouttown

Eileen, That's what I was thinking about the tamoxifen timing, I'll give the MO a call next week. I got a sleeve right after surgery, my surgeon is really concerned about LE and put the fear of God in me about it so I have worn it pretty much every day since then. The thing was so uncomfortable at first and actually gave me mini anxiety attacks throughout the day, especially when paired with a "head sweat" or hot flash or whatever those new moments of intense perspiration are! Anyway, I thought I'd let you know, in case you find yourself struggling too, you do get used to it in time, just like so much of the other shit we're being dealt. Now I don't even notice the sleeve and it actually seems weird to not have it on. I got a purple one in addition to the bandaid colored one that is more "fun" to wear. Compression sleeves are also "in style" right now for athletes. I picked up a set of adidas brand sleeves that are a little more "stylish" maybe but I do feel awkward wearing them since I'm so obviously not a runner!

It's still really mild weather here in Oregon and so I have always worn long sleeve shirts out in public with the compression sleeve. I imagine once it gets warmer the whole idea of it will be less palatable. With rads starting next week though I know I have to stay diligent about wearing the sleeve and getting the MLD. I hope your experience with it all is tolerable. Since you'll hopefully only be wearing it when flying it can maybe just be something you tolerate for the short term. Have you had some arm swelling already?

eheinrich

I have some swelling in my lower arm. It's kind of interesting to push on the skin and leave a dent. My pt is concerned because I'll be on 4 flights within the next two weeks. So she ordered it right away.

Meme117

Hi all it's a rainy day in PA, can't get motivated to get going... But I making my way to go to the post office and mail this special traveling bracelet. Thought I'd post a photo first, a Diane added the bed and I added the angels wing. I feel like your all my guardian angels walking with me thru this horrible time in my life and I want to say Thank You from the deepest part of my heart for the love and support❤️

ninjamary

Bekah,

You should get a sitz bath or you can use a bottle with a squeeze cap to clean the area. I swear the sitz bath works wonders. I use both hot and cold water. If I could I would have a bidet in my home.