March 2010 Chemo Start

hmh23

Charley;  I'm anxious to hear what your onc has to say about Rogaine and I wonder if it matters if you use the 2%(women) or the 5% for men?  My eyebrows are non-extistent as well and the eyelashes are falling out by the minute.  My hair is about 1/8" long and seems to be hanging in there.  Heather

marilyn7

Congrats Alison!!!  

I had my last chemo on Monday, but today is crash day. I can't wait to turn the corner!!!  I feel like total crap!!!  Going to bed, with the hope that tomorrow is better.  Either way - I'm at the tail end of this thing and I just have a few more days to endure.

'night.  Marilyn 

hereandnow

Hello lovely marchers,

congrats to marilyn and alison - yahoo, you made it. I'l be joining you on Monday, fingers crossed.

heather - I take B6 100mg daily for the first week of my taxotere - so far so good. I'm clearly going to have to work 3 jobs to save up to hire a plane for all you guys who have offered to help with the painting LOL.

Charley, have you been to the thread 'Hair,hair,hair' - I'm sure yours is just being shy, and it will start poking out soon. I noticed 2 underarm hairs appeared today - dammit.

I saw my oncologist today and got my first script for tamoxifen, to start 3 weeks after finishing chemo - yoiks. We also discussed zometa infusions, and she had me written up to start it on Monday, but first she's going to check if I am suitable for a trial that's just started looking at a new drug called denosumab and its role in preventing recurrence. She didn't have all the information - but she'll tell me on Monday. The good thing for me (apart from the health benefit) would be that instead of a 6 monthly infusion costing me $400 each time, it would be a free subcutaneous injection each month. Love free.

 hugs to all, have a great week-end,

Lisa

badger

Hi all - seems we start and end the process of chemo thinking about our hair!  I've been using Nioxin since my hair came out, as recommended by the stylist who gave me the Locks of Love bob.  She said to use it when my hair first started falling out, all through chemo, and once it starts coming back in.

So I spent $20 on a bottle of Nioxin #1 for thinning hair.  Someone on another thread said she used the Nioxin #2 for chemically treated hair, because our hair is being treated chemically from the inside out.  Any thoughts on that? 

Thanks for being here everyone, you are a comfort and I appreciate you!!  {{hugs}}

carolsue63

Just started my sixth and final chemo treatment. A few short hours from now I'll be done!!! 

I'm so happy for all of you who have finished your treatments, and wishing an easy time of it for those of you heading into the home stretch.

KathyH0110

The port option is-Do it! Esp if you're having a lot of chemo treatments. Mine was put in this April and so far I'm doing ok. My chemo ends this month but I'll still get Herceptin until next April. In August I start rads. I'll be praying for all of us. God Bless!!!

barb_k

I had my port put in in march. My chemo ended in may and I had it removed in June. It was great for the chemo. No bruides on your arms. But it still looks like I have the wire in my neck. The surgeoon says it is scar tissue. It does not bother me but My dear D is freaked out by it. But I would have another put in if I had to do Chemo again.

I have just been hanging around an reading the posts for the past weeks as I came back from my trip and had a bad sinus inf. and bronchitis. Just now getting better after that and the surgery for the port.I am on arimidex now. Not having alot of SE's but I didn' have alot SE's with the Chemo either.

Hang in there every body.

hmh23

Barb;  Was the surgery to remove your port similar to the one when they put it in?  Thx Heather

Taty98328

Hello Ladies! My vitamin D level is 32. My onc told me take 400 unit vit D3 twice a day. Do you think this is enough?

Charley

I went to a new PCP Friday.  Seems really nice.  Told me he would not recommend rogaine as although I am 6 weeks PFC and haven't had any growth, hair grows in 4 - 6 week cycles so maybe I just haven't hit my cycle yet?

So Heather - no rogaine. I will just be patient. And I understand ... having eyebrows and eyelashes would make the loss of head hair be so much easier.  <sigh> Hang in there. When will you be done?   Lisa - I have been to the hair thread  ... hard to keep up with it ... but I do see that there are others that have shy hair growth.  I'm just being impatient. 

Badger - I have heard that the first 1/8 inch or so of hair growth will not be "good" and needs to be cut off.  Haven't heard you need to use shampoo for chemicall treated hair. I would think it is for permed hair or color treated and those trying to keep the color or perm longer.  Of course, I have very little experience with this ...

badger

Here's some hope for hair ladies.  I work with a survivor of lymphoma who was bald from chemo when I started there about 3 years ago.  Now her hair is beautiful, shoulder-length and shiny.  When her hair started coming back, she had frequent haircuts to get rid of what she calls chemo hair.  I should ask what she used/uses on her hair.

She wore a scarf the whole first year I knew her.  Meanwhile, I've gone bald to work.  And it's been OK.  Around town, I wear a Milwaukee Brewers baseball cap (appropriated from DH) that gets less attention than a scarf.

Oh, I wanted to mention, in defense of the WalMart employee who called me sir last week, he saw me from the back and I was wearing a big t-shirt and no earrings.  Of course, earrings are no guarantee of gender these days.....

hereandnow

I have bought 2 new pairs of earings, and I wear necklaces more often too. Several of my hats are kooky, so clearly I'm finding the whole accessorising thing helps, oh and I usually put on some lippy and some powder when I go out- more so than I ever would in the past. Once the fluff is a little longer I'm going to start jooshing it up maybe with an oil - although I don't know which one - any suggestions? It's all about the mask of confidence, hey?

 It's almost midnight here and I have my FINAL chemo in the morning yahoooo!! - I've had my mega steroids, I've vacuumed the house and cleaned the bathroom, I am rambling along in this post, and I've had an ativan. I think I'm both excited about tomorrow and souped up on dex - sigh. Maybe I should have another ativan...  

hugs my friends,

Lisa

ps - teemee, hope you're ok, haven't heard from you for a while - hope your SE's are settling down, and the lion is becoming a more distant memory.

hmh23

Taty;  My onc has me taking 1,000 mg of Vit D daily along with 800mgs of calcium.  He stressed the importance of taking both together.  Hope that helps.

Charley;  I have just finished my 2nd Taxol with 10 more to go.  I did 4 rounds of AC as well.  I don't have much hair growth either.  It is about 1/8" long over the majority of my head with some really spotty areas along my temple.  So I guess I have that first initial hair growth that will be cut.  My daughter (she's an actress) is coming home next week and we're planning a stop at Sephora.  She spoke with a makeup artist who recommended a couple of products namely eyelash clusters to use instead of fake eyelashes and then a brand of eyebrow makeup as well.  I will pass along the brand names to all who are interested.  The empty head of hair doesn't bother me nearly as much as being without eyebrows and eyelashes.  I feel like my face has been erased. Another great line from "There's No Place Like HOPE";  "Just as everything beatiful in nature needs times of dormancy to leaf out, blossom, and bloom again, so, my friend,do you."  We are all in different stages of dormancy, some of us will take a bit longer to bloom. 

Lisa; CONGRATS on your final chemo!!! 

Have a great 4th of July!!!

Fondly, Heather

barb_k

hmh23:  The surgery to have the port takin out was roughly the same as putting it in, but did not seem to take as long. I could feel the pressure etc. when they put it in, but I seem to have slept through taking it out.  It itches like crazy now as I broke out with the tape.

This is the first I've heard about the first hair being cut off.  The hair that came out is just starting to grow good, the hair that was shaved is growing fast so I shaved it to get it even, but the hair that I shaved is still growing faster. What is the basic reason for cutting first growth?

hmh23

Barb;  Thx for the info on the port removal. This was the first time I had heard about the initial hair growth needing to be cut.  I'm just thrilled I have some hair growth. I realize it will all have to be trimmed at varying stages through regrowth.   Heather

EZH

Hi everyone! I'm still here, too,  been following along and sending good thoughts to all of you....some struggling to the end of chemo and some, like me, saying "WTF"(no one offended, I hope?) as we watch our eyelashes/eyebrows disappear.  Really not appreciating the disappearance of my eye lashes!

I had my "exchange" surgery on 6/21 and it went well.  Anyone else done the exchange? My expanders were sooo uneven, it was comical! So, I'm happy to report that my new ones are even! Since I am BRCA 1+, and had ooph along with bilat-mast., I am now on Arimidex.  Anyone else start Arimidex?  Some excellent info. on the associated strand, but I haven't seen any fellow Marchers there.

 Thanks to all of you, coming here helped me in a huge way through such a very difficult time.

hereandnow

yahooeey! yippee......  Last taxotere done, and hasta maniana to that crappy stuff / magic medicine which is saving my life. Enjoying the buzzy post chemo, steroid driven energy, and am equally looking forward to the down the rabbit hole crazy drop which hits around day 5 for me - because, fingers crossed, thats the last for me. I had my first zometa infusion today - couldn't go on the denosumab trial as it has to be commenced with 10 weeks of surgery - no worries.

My TE is at 400ml, and my recon surgery date hasn't been planned as yet. I have one 400ml turtle shell on my right upper chest, and one around 350ml soft boob, which sits down lower, so depending on whether I wear a bra (rarely), it's wonky and kind of funny, and challenging to find clothes to mask the asymmetry.

Heather, I ran the number one around my really baldy areas sides and back of head when the fluff started because it was tatty looking and I had read about "chemo hair", the top I ran a number 4 over sort of just to tidy it, but what started off looking quite gray, is now coming in dark, still straight at this point early days, but exciting to see the darling buds of the new world coming.

Hugs and love March sisters,

Lisa

badger

congratulations Lisa!!! 

marilyn7

Yeah Lisa!!!!!  Congratulations.  Another March Gal finished.

Enjoy the steroid buzz.  We'll be right here when you emerge from the "rabbit hole".

I'm hoping I turned the corner today on my 6th and final treatment (one week ago today!!!).  My stamina is still the pits and walking up the stairs takes every ounce of energy I have.

I know we are all on different protocols, but has anyone else dealt with this mega-fatigue and when does it get better.  What about taste-buds - when do they come back?  Oh, yeah, and the tingly neuropathy in my finger tips?  Do I sound impatient!! - Forget the freakin' hair, I just want to feel normal (of course I do want the hair too).

I hope everyone stays around on this thread through rads.  I don't start until July 19th and I know there are a lot of you who have already started.

Happy 5th of July (a well-needed work-holiday for me).

xo Marilyn

badger

Hey all - I'm off work today too.  Recuperating from cleaning/painting yesterday.  I worked hard for about 4 hours then boom I was done.  Spent the rest of the day on light duty.  Will need to get in better shape before heading to Australia to paint Lisa's house!

Marilyn, it seems like it took me longer to turn the corner after each tx.  Had #6 and final tx three weeks ago now.  It took a week and a half to feel OK and two and a half weeks to feel good.  But I do feel good again.  What a simple pleasure most people take for granted.  Just feeling good. 

Per the above I still get fatigued but haven't had tastebud or fingertip issues. (touch wood)  Ankles are still a but puffy but no more cankles.  My feet do get sore, esp the balls of my feet.  I have a creaky jaw on the right side, and had a lovely eye stye last weekend.  It came on Friday morning and thankfully subsided by Monday evening.  Not sure if it was from an eyelash falling out or coming in but at least it came and went fast.

I see onc tomorrow for follow-up appt.  He'll check my blood and we'll talk tamoxifen.  My mom was on tamox for 5 years from 1994-98 and she recalls no big SE's so I am hoping for same. 

Hang in there everyone!!  {{hugs}}

marigunn

Just stopping by to say that my treatments will end August 6 (correction: August 20 -- I forgot that switching from taxotere every 3 wks to weekly taxol adds two more treatments.), barring schedule changes.  I switched from taxotere to weekly taxol due to bone pain from the taxotere.  So far, taxol is easier.  Not liking the taste bud issues!  I'm having the same problems that many of you mention with the eyebrows and lashes.  I have very short hair growth that I'm hoping will not all be lost due the the taxol!  (Still have short fuzz!) Best of luck to all of you and congrats to those who are done with chemo!

hmh23

CONGRATS, LISA!!!

I continue to have pain under my arm along my rib cage where my drains were located.  It feels as if I have a bad bruise.  My onc told me that given the extent of my surgery that sometimes it often takes time for this pain to ease up.  I've noticed it really bothers me if I sleep on my side.  Is anyone else experiencing anything similar? 

Heather

barb_k

Heather I have the same pain where my drains were and I also have lymphedema behind it . My Dr. did not seem to inerested in either. Made an appt. with lymphedema specialist at my phy therappist. and it helped the lymph.  I sometimes find it is more comfortable to wear a sports bra. But then I have the problem of my prothesis stayin in place. I'm going to get my sewing machine out and alter the sports bras to be mastectomy bras. cheaper than buying a vest for the lymph. although the vest will be longer. Have to get back to work before I splurge. Ins already paid all they will on that part. I am keeping my eyes open for a mastectomy bra with a wide band at the bottom. Hope this helped.

hereandnow

thanks girls for the congrats! I'm still feeling ok- waiting for the shoe to drop.

Heather I have had some ongoing discomfort on my right side - for me doing daily stretches/range of motion exercises and self massage has helped. The numbness under my right arm is gradually improving as well - I had axillary dissection, and they almost always end up cutting through nerves (thoracodorsal nerve).

badger and marilyn, I told my onc about how I was feeling ok and then after flying the other day and luggage lugging, I was very pooped for a couple of days. She said it takes many people 3-6 months before that fatigue settles. It's kind of like there's no "reserve". So, I have been banned from the ladder, and the multifiller, crack fixing until there's a tiger in my tank again. Inside house painting will probably take me 2 years, so there's plenty of time yet badger LOL.

marigunn, that's good news the taxol is easier on you. I'm hoping sucking the ice will mean my taste buds will survive better this time. But the good news is, it's not permanent.

staceyt

Hello Ladies,

I hope everyone enjoyed their 4th of July celebrations - Congrats to Alison, Marilyn, CarolSue and Lisa for finishing.

I have finished my rads (yesterday) and I can almost say I'm done - The nurse again told me that I will peak 8-10 days and just to watch the area.  I am "burnt to a crisp" under my armpit and under the breast in now healing not as red as it was.  I meet with both my rads & onco Dr's on the 22nd and see where I go from here.  Of course going to have re-construction as 1 is smaller than the other now but I think I will wait a little for that.  Some say keep going so you can put it all behind you and others say wait.  Behind me yeah right - It will never be behind -scars will always tell the story. 

I continue to pray everyday for all my fellow Marchers!  Talk soon - gotta look up the Hair boards now.    Stacey

Yeshua4Me

Leaving for chemo #6 this morning. Almost done...only 2 chemo's left to go! No rads or pills for me (after I'm finished with chemo in August) because I'm triple negative. Nothing more they can do for me but I don't care. They've done enough!

Thanks for all the advice about my new chemo Taxotere. This time I'm going to suck on ice chips to help with the taste buds. My big toes are doing better and are not as painful. Still completely black and I have a feeling they will fall off but so far ok.

The bone and muscle pain has eased up a bit but I still have to take codine daily. I think I'm popping too many so I am going to ask my doctor this morning if there is anything stronger he can give me. For a while there the bone pain was unbearable! Like I said, it is much better now but still noticeable.

Hope all are doing well and I too look forward to the day I can say, "No more chemo!"

Ana1973

Hello ladies!

Congrats to those who have finished chemo! On Wednesday I will be 7 weeks PFC and today I begin week 4 of rads.

I continue to pray for all of you as you move forward in your Tx. I hope you are all seeing the light at the end of the chemo tunnel. You will feel good again, your favorite foods will taste as good as before, the hair does come back although slower then you would like.

Rads has been a breeze compared to chemo, but just like anything involved in tx there are SE. Fatigue and skin issues are the big ones, but nothing I/you can't handle.

Sending big but gentle hugs to all of you!

Ana

BonoboGirrl

Hello, everyone. Sorry I've been out of touch--was focused on work, kids and getting through the chemo. I had my last round of the rough stuff--TCH--almost three weeks ago and will switch to Herceptin only beginning next week. The Herceptin only treatments will continue every three weeks through next spring, so I'll be keeping my port in until then. Hair should grow back and in a couple months, since Hercepting doesn't affect the hair, x my marrow won't be affected by Herceptin either so it should bounce back relatively soon. The only thing I seem to be struggling with these days is anxiety/fear of recurrence. It's difficult because prior to this I was never a very anxious person. I hate feeling this way, hate how it removes me from fully engaging and enjoying the every day. I can't force myself to feel otherwise either. All I can do is feel it and keep functioning, hoping that it will abate with time. Are any of you struggling with anxiety or fear of recurrence? What is helping you?

@Hereandnow -- I too have found myself wearing jewelry and more makeup than usual now that I'm bald. I also have been sticking with funky hats and some hip scarves. Seems to brighten me up.

marilyn7

Hi Everyone,

I had my post-chemo meeting with Onc this week.  She also said that it will take 3-6 months to fully regain stamina / strength, but urged me to continue exercising every day to the extent that I can. Although she cautioned me to stay indoors and cool (I'm in the DC heat wave).  Being back to work full time feels like exercise enough!!  My energy level is OK when I'm sitting at my desk, but the minute I have to move, I feel like I'm running in molasses.

I get my port out on Tuesday - YEAH!!!  I'm going to have all my other blood work done first (cholesterol, thyroid, triglicerides, etc).  My understanding is that it will be much easier than putting the damn thing in (that was a bad day!).  The surgeon said I needed to get the port out either before or after rads, but not during.  Given that I had a port related blood clot and I have to continue taking Coumadin for 3 months AFTER the port is out, so the sooner the better.   

I just started getting mouth sores this week - now that I'm all done - I'll start with baking soda and hope that works.  Anybody have any experience with mouth sores?? 

Wishing everyone continued recovery for SEs.

Marilyn 

Yeshua4Me

Marilyn7: I've had mouth sores. They're a bummer to have~ quite painful. Told my doc about them and he prescribed a "magic mouthwash" that I absolutely hated! Took it only once. It numbed my mouth, tongue, and throat for about 15 minutes. I thought I was suffocating. Decided never to use it again. I went back to the basics...baking soda, salt water, mouthwash w/o alcohol, and rinsed my mouth every hour or so. Cleared up the mouth and tongue sores in about 3 days. I get them after every chemo.

Speaking of chemo, I had my 6th round on Tuesday and had quite the experience. I tried to die in the chair! After being hooked up to the IV, my nurse went to the lady next to me to hook her up. I had Taxotere one other time. This was my second time with this chemo. Within 2 minutes I couldn't breath. I was trying to tell my husband but I could only gasp for air. I turned red then purple and heard my husband yell,"Hey, something's wrong here!" The nurses came running and put a few needles of something into the IV and after a few minutes I was back to normal. They said I had an "reaction"~ Ya think?

My doctor came and said I was fine and that they needed to have the IV drip slower, have the blood pressure cuff on me at all times taking my pressure every 15 minutes, and watch me the whole time. I started at 9:30 a.m. and didn't get home until 3 p.m. for a chemo that's supposed to take no more than two hours. Talk about a long day. Anyway, they said at my next chemo (July 26) that they have to watch me real close and go real slow so I don't have another "reaction".

I guess I shouldn't have teased the nurses about the "crash cart" sitting in the corner huh? Serves me right!