January 2012 chemo

Thanks, Rachel - you're so right, we all have our own demons to wrestle and our own paths to walk.  Even though we're on this journey together, each of us is having such varied experiences and SE's.  I can't tell you how wonderfully calming and peaceful it is to "meet up" with you all every day, hear how you're doing, share in your funny hair-cut and wig stories, and try to help each other through.  I feel like an "outsider" in my own life these days; very few people really understand the physical and emotional pain I'm going through.  But I always know I'm safe here - and that makes every day so much easier to bear.  Thank you all so much!!

I bought a variety of hats...hated the wig idea.  Turns out an older knit hat is my favorite, apparently my ears hate hats!!  The scarves are nice inside..but tooooo cold outside.  I also HATE being bald!

Going for #3 AC on Thursday...just got over 9 crappy days and I'm finally on the good days!

Catwhispurrer~ I also have Neuropathy and mine happened the first time around as well, on my finger tips, all but the pinky's.  Tingling sensation and sensitivity.  Gets better by the 9th day, mine tend to be so sensitive its hard to type, or tap them on anything.  I wear soft fleecy type gloves all day (The cheap $4 ones you find at any store), to deaden the sensitivity and it helps. No Numbness at all, and nothing on my feet.

I also can't take the blood test from the finger tips anymore...the pain of it throbs all through Chemo and I have to wear a padded bandage for 3-4 days on that finger after that...almost made them stop last time the pain was soooo bad.  I switched hands from the 1st to the 2nd Chemo, thought it would help, nope worse than the 1st time.  Anyone else getting the CBC from their finger tips??

CatWhispurrer - Definitely call. The tingling could be the early signs. I take B-6, and some other people have suggested a supplement called acetyl-L-carnitine. My MO asked me to wait before trying that (already on so many different things as it is). I also seem a little numb on the very tips, but that seems to go away (and I type so much it could be callouses!).

PCBarbie - I hope you find some hats that you can rock. I don't like being bald, but I'm doing okay with the options.

I finally put together my 'hair' journey as of now - before, the thinning, and now, with hats. Not the best photos (the sweater and TEs make me look like the Terminator), but they work for now. You can check it here:

http://www1.snapfish.com/snapfish/thumbnailshare/AlbumID=4893775016/a=4949599_4949599/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/

i just had one TC and have lost most of my hair. I am going today to discuss either AC or CMF , I hope my haie comes back. Not bald but almost

Rachel:  Thanks for sharing your photos.  I've been wondering what my hair would (likely) look like as it starts to fall out.  Your photos helped erase that fear of the unknown (there's so much of that fear in all of this disease!) 

Your hats and scarves are beautiful!!  I haven't been able to find non-winter-type hats (like your first, cute hat) to wear yet, but I have an abundance of wool cloches.  And your scarf is gorgeous!  I'm scrambling to find stuff to wear because I really thought I'd be wearing a wig but I'm pretty sure now that's not going to happen.  Bought a cheap one that is just totally the wrong color; got one from the wig bank through ACS and it's just awful.  Scarves and hats are totally the way to go for me.

Bela - You can look into the cold caps some people have mentioned. They're expensive and take a lot of effort, but they seem to work, so you may feel it's worth it. Losing or regaining your hair doesn't have anything to do with shaving. Most of us shave it off once it starts falling out because otherwise we're left, at least for a while, with bald patches. Most of it does fall out, and once it falls out, it usually doesn't start regrowing until after your treatment is done. How long it takes to return depends, but it's a good bet that most of us will still have very, very short hair at best a year from now. For many of us, losing our hair is one of the hardest things, so take a lot of time to think about it and come to grips with it. There are good wigs out there and some resources (tlcdirect.com has some great options, a local breast cancer resource center in my area has a wig bank, etc). Some of us have decided that this is really the time to experiment - I'm finally trying life out as a redhead and loving it, plus having some good hats.

And the best advice I can pass on - load up on great, dangly earrings. They make you look beautiful no matter what is on top of your head!!! 

WaveWhispere~When I watch TV I find myself stairing at thier hair and clevage (I had a BMX back in November) and never hearing a word they say!!  My Close friend told me thier overated..

Racheal~You Look Beautiful in all your photo, thank you for sharing with us..I do have some more hats coming from Ebay hopefully some won't hurt my ears and they were all pretty reasonable.

Off to find out the results of the BRCA 1&2...

rachel - Thank you for the pics.  You look fabulous, love the scarves and hats on you!

I've been flossing, but my MO said just to be careful. I have a gap between two teeth after a filling last year that always gets stuffed, so I'd rather take the risk. But I have been careful. I've also been chewing gum more often - it helps clean things up a bit and just makes everything taste better. I should give my toothbrush a good run through boiling water, though, just to kill anything that might be lurking.

I've found the most frustrating thing is the 'immunity' issue. I don't get my blood counts checked regularly - unless I wind up in the ER - so I have to go through days 7-10 assuming that it's open season on Rachel for germs and just do my best to ward them off. I already posted (though on the Dec thread, maybe) that I'm feeling like Monk from the TV show - give me a wipe, now!!!

Went to order that other wig. Not quite as 'super' as the first time I tried it on, but I'll go ahead and get it. And apparently the freebie I got at the local wig bank at the breast cancer resource center may be the same brand - at least it's the same high quality, which is kind of nice. The woman who does the wig fittings at this place said one big difference between the low and high quality wigs is that the better ones really make it look like the scalp is under all that hair, and she's right.

Good luck to everyone today. 

Grateful-ugh...I feel your pain! I'm so sorry you had such a rough treatment cycle. I did too the first treatment. The nausea was hideous! Perhaps try Ativan. My MO recommended it, along with the Zofran and it worked! Within 30 minutes of taking it, I felt good enough for a walk. I also started acupuncture. I don't know if the Ativan or the acupuncture is responsible for less intense side effects, but I'm sticking with both! Good luck! Treatment 2 was better and way more manageable. Don't get me wrong, I still feel a bit "off" but it's such an improvement from," if I speak, move, eat, or smell food, I may puke!" I hope your second treatment is better. Please mention the side effects to your care team. Most likely adjustments can be made so you can feel a little more human.



WaveWhisper-I love Charleston and your photo is beautiful representation of your charming city. About the hair...I can't believe how long it takes post final chemo to get hair back! There's a thread about hair regrowth. It's called hair, hair, hair and more questions about hair (something like that). I check it out from time to time for an honest look at the future.



I have also found some lovely head covers on etsy.com. I search chemo head scarves in the handmade section. Many of the offerings are handmade by people who have had chemo induced hair loss, so they know the deal and what works best. Most are very reasonably priced as well.



Take care today!

Grateful33..

I have had the same debilitating SE's as you. Neausea, blurry vision, shakes, etc. My Onc has me come in the day after treatment for my Neulasta, more fluids, steroids, and IV anti-naeausea meds. Made the second go a little easier but it was still rough. I was also put on Reglan (Metoclopramide), ativan, and phenergan for my oral meds. The compazine was contributing to my blurry vision so I had to stop that.

I wish you well on your treamtent tomorrow. There are other meds and treatemnts to help with the SE's. Definitely ask your MO what can be done different to make it more manahgeable. Chemo is NOT for sissies! HUGS!!!

Rachel- Thank you for posting your pictures. I find you so brave and uplifting everytime I read one of your posts. I am patchy bald right now and I will be glad when I am ALL bald. I have a had a headache from the tightness for 3 days. I've had enough, just be gone hair...

Good luck to everyone having treatments this week. Praying for minimal SE's for everyone!!!

rachel:

thx for sharing the photos!

another meds question:

my HER2 is negative-should i be on herceptin?

i ask this cuz i go this week for the MUGA

that's what i read/thought--ok--was just wondering- i intend to question him (MO) about this if he insists!

Hit my first real bump in the road. After five days of 'not-too-bad' SEs following my first dd A/C, I ended up in the hospital last night with unremitting stomach cramps after a day's bout with diarrhea. I haven't been in that much pain in I can't think when. We arrived around midnight, after the oncologist suggested heading in to the ER, and once they hit me with a whopping dose of dilaudid I actually felt like living again. We made it back home by four am.

Now I'm just wiped out. And so grateful to be relatively comfortable again. This really is a day to day type of endeavor. I've been in recovery for over 22 years, so the concept of one day at a time is not new to me. But that dilaudid high? Wow. I haven't felt anything like that for a long, long time.

Annie 

Oh Annie, I am so sorry. I had that with my TC and now going for AC and reading your post I am scared.I had so much diarhea. How did the diarhea stop?

Thanks

bela 

ps I ended up in hospital for 12 days thats how bad mine was