Starting Chemo January 6, 2014

Hi ladies I am on the dec chemo site since my first AC was 12/19  but the rest of my  2-4 ACs are in jan so I sort of overlap. Luckily I am tolerating the dose dense 2 weeks cycle fairly well, fatigue the biggest issue. Constipation and heartburn for a few days after the dose but that eventually passes. Trying one senna pill a day starting day of chemo. I hope this works smoother the waiting 3 days and chasing after it. I found great gummy fiber chews also.  My public hair stated to fall out before head hair.  Funny I lost about half of the lower hair and it stopped falling out ( for now). My head hair really was lost from day 17-19. I was left with whispy sparse hair that my 20 yr old son said made me look like a Chucky Doll. I left him shave it down with a clipper. Felt and looked better.  I did get the most beautiful wig at the American cancer Society. They will give you a wig and several turbans. I also am signed up for the Looking Good-Feeling Better make up class. It was reschedule twice due to weather and then to the leader being sick so hope to go on the 27th. I hear wonderful things about this class. 

Just had my third AC yesterday. Yeah 3/4 done.   My MO says the weekly Taxol is easy compared to AC.  I work in a three doctor primary care medical office so I decided it was not safe for me to work during the AC cycles whe my WBC go so low. Middle of cold and flu season and too many sick patients coming in. I do telecommute and talk to patients by phone and can do quit a bit from home. I hope to get back at least 3 days a week whe taxol sarts. 

BTW I found generic Claritin works great for the neulasta pain. I start the day of chemo and continue for 4 more days. Other them some aching in my lower neck and head aches  it seems to work. My WBC went from 1.0 a week ago to 10 yesterday so the Claritin is not interfering with the efficacy just the pain. 

paloverde  - look into patient assistance programs for the Emmend.  Try this link to start. http://www.emend.com/aprepitant/emend/consumer/as...

Best to all getting chemo this week or starting soon. You will get through it.  My mantra Is "the hair will grow bak but the cancer will not"

Barbara

Paloverde, I'm proud of you for calling your onc to get better nausea meds. I'll be praying that the get the Emend for you. I got Emend, Dex, & zophran at infusion. Took Dex for the next 3 days and never ever had nausea.

Crazywabbit, since you're ER/PR +, I assume you'll be taking either arimidex or tamoxifen depending whether or not you're post or pre menopausal. Claritin works for the bone & joint pain associated with those too.

Usually getting a headache after chemo is caused by the infusion being run too quickly. I had headache after the first 2 infusions. Ask your nurse to slow it down a bit.

Weekly Taxol is so much easier. My only SE was fatigue. However, you do need to protect yourself from neuropathy. You can do that by getting L-Glutamine at GNC. Take 30 grams daily. One heaping tsp is 5 grams. I used 15 grams twice daily. I mixed it with grape juice in a tiny little juice glass. Also take vitamin B6. 

Warrior, I love the Look Good Feel Better class. It was very informative. They give you a makeup kit for your skin type plus other gifts. Enjoy.

Paula

hello all - I had my first AC infusion yesterday and it went pretty well, except for having to have port poked twice while trying to find it :-(.  Since yesterday, i'vet a little nausea I and very tired, plus a weird foggy feeling in my head. But no one here has mentioned HICCUPS!   Anyone else having this???  It's constant, and really bugging me. 

Apparently hiccups can be a SE of Emend. 

WW, awesome that you don't feel like crap!  I'd just go with it! 

A few of the doctors I've met on this journey are real humanitarians.  I believe they practice medicine because helping and healing is their calling.  Then again, I've met some who don't know what being human is all about.  God forbid anything should ever happen to my husband, I will marry my MO.  

stephaniegee - I'm from Montreal!  I've been living in Toronto for 15 years.  Interesting that you're not getting FEC-D like I see many Canadian ladies getting. I'm not caught up with all the posts, how many chemo treatments have you had? Are you feeling ok?

Warrior - great that you're feeling well! Just enjoy it, we know it might change in the later treatments. Glad you're able to run!  My PT is ordering a sleeve for my LE since I want to run soon and my LE seems to be staying. It's still quite "mild" but I can't make it worse. But I don't want to wear a sleeve, just want to go for a simple run and not look like a freak and not sweat more than I need to in the summer. I hate BC!!!! Sorry, needed to vent.

Yes, some doctors and nurses are really fantastic people. The "assistant MO" I had explained everything so well and was so nice, it made learning the news that I needed chemo more bearable. The main bad experience I've had so far is my BS's coordinator, who did not provide nearly enough info and forgot to call me about some appointments...

I have to ask about Emend, I don't see it on my list of prescriptions but maybe it's under a different name. Funny about the hiccups!  All these things that you can't know, unless others who have been through it tell you about them!

Katiegrey - hope you're still feeling ok and not too nauseous, sorry about the port issues.

Paula - thanks for the info on preventing neuropathy, other items to add to my list!

paloverde - hope you're feeling ok and will have the Emend issues solved before your next treatment.

Barbara, congrats on being almost done!

tekwriter, I hope you're feeling ok. I too have curly hair and very curious to see if I'll be able to find (have made?) a wig that I will like. We'll see this weekend!

I'm envious of the ones who have started reconstruction at the same time as the mx/ bmx. My BS had advised me to delay recon since we did not know if I would need chemo or radiation, and treatments (particular radiation, I guess) could complicate the reconstruction... I think she was being way too careful. It's so common to get these surgeries done at the same time and get treatment after. I'll have to go through a full surgery (and time off) when I'm ready for recon. I really should have asked for a second opinion. I'm not one to question "experts" and what she was saying was rational, but it was likely way too conservative and will be a pain in the butt in the future. Oh well, can't think about this now!

Good night!

Wabbit you are scaring me, sigh.  I still have a full head of hair.  Hit day 23 I can see I am losing strands on the pillow and the shower.  I see some eyelashes on the pillow and some in the bowl.  When I pulled on a knot in the back the whole thing just pulled.  I think I have at least another week, fingers crossed.  My husband is going to shave his head with me but I am afraid I will cry.

I attended LGFB on Monday.  It was okay.  There were 4 of us - I had envisioned a larger group - 2 of us had BC, one in her 20's had leukemia, and an older lady had Stage IV lung, ouch.  I walked in from work in full makeup, not realizing part of the deal was the hands-on demo.  Since I was going back to work after lunch, I declined the do-over and stuck to watching, listening, and getting to know the others.  

The sample kits were a little random, no two alike.  Some nice brands in there.  Interesting ideas about brow stencils, semi-permanent brow tattoos and such.  I had already ordered the Brian Josephs brow and lash gel, tried it yesterday and today, and we'll see if it works as advertised to prevent brow & lash loss.  If not, it won't be the first time I've wasted $50 with good intentions, and surely won't be the last.  

There was a 6-minute video on dressing, to disguise either weight loss or gain, and skin care.  Then a "field trip" across the hall to the "image lab" for those who hadn't chosen wigs yet.  They were also giving out up to 3 free head dressings.  I took 2 that I liked, and later in the week ordered some more online from Headcovers and Hats, Scarves, & More.  Planning on using the wig for work but not for around the house, the gym, or most errands.  

I'm no longer sure I like my free wig that I picked out a few weeks ago.  I'm going to a wig shop today to see if there are better options - I did get a scrip from the MO team so it should be reimbursable by insurance.  A week from today my hairdresser will cut my hair to 1/2" - I already wear it pretty short anyway - I'm hoping between that, hair nets at night, and lint rollers I can avoid the "buzz" step.  That freaks me out in principle and I'm not sure why.  I know it works well for many.  

What are you all doing or planning for head coverings, or the "bald is beautiful" look as my BIL calls it (not for me, sorry) - have you thought much about it?  

hi all, we'll I went to my hairdresser yesterday and had the big "chop". It's about as short as you can get with scissors at the back and a touch of Miley Cyrus at the front ( or Flock of Seagulls if anyone out there remembers the new romantic music movement of the 1980's). I quite like it, and it's interesting to see my natural colour.... Ash blind with salt an pepper grey. I expect to get a week out of it before it falls. My hairdresser also cut my wig to suit me better and I'm happy with the result. Paloverde, I plan to only wear my wig to work, I have a nice collection of headwear now, but the way the weather is hear I think the big floppy sun hat will be my mainstay.

I'm still se free and very much looking forward to work tomorrow, wish my good luck!

We'll in off to the organic farmers markets now to so my weekly shop, wishing you all a wonderful day/night where ever you are

LIL

hi stephaniegee. I use biotene toothpaste with a very soft brush. I make up a solution of 500ml warm water with 1/2 teaspoon bi carb and 1/2 teaspoon salt. I rinse with this 4 times a day for at least 30 seconds. I have been susceptible to mouth ulcers in the past, but its solution is keeping my mouth very comfortable. Hope this helps

LIL

paloverde, thanks for the info on reconstruction. I did not realize that there are truly some consequences from treatments, and that you will end up keeping your TE's for 15+ months. So sorry about this. I hope they are not hurting much now or that they will stop hurting once the fills are done. Thanks for the info on LGFB, it's so useful to hear from someone who has been to one of these sessions! I now know that I should wait until treatment start to attend, and that I should not be wearing make-up (or not much) beforehand. Precious info! Personally, I don't think I'll go bald except inside the house, but I don't know if the wig I'll eventually get will bother me. We'll see.

diamond, congrats on the haircut! Interesting thought to bring the wig to your hairdresser, I'll probably do that too since I really trust mine.

stephaniegee, FEC-D is another chemo protocol, I think it's very similar to AC-T (at least the D drug is very similar to T), it's what I'm getting and what I see a few other Canadian ladies getting on bco. But I don't know much more! Sorry about the mouth pain, I hope the advice from the others help.

I shopped for a few chemo things today and told my son about this upcoming treatment, with the help of the kids book. It went well, but I think it's big news for him to absorb. Funny comment from DH about hair, I was saying how being done with chemo will test my patience since the hair growth will probably be slow, and it will take a while to have it down to my shoulders like I have it now. He said, "If you finish chemo in May, it will be to your shoulders by September, no?" WTF??!!! He said yeah, judging by how often he needs to cut his hair! He's a little clueless in this area!

I went out popping tabs with the kids tonight and I am now hurting so bad. I went to bed at 10:30 so tired and took all my meds, back up now just aching and hurting.  I feel like I have a URI.  Everyone in the house has had one.  I requested a Dr.'s appointment online this morning for the coming week.  Was fun to get out and got some great buys, just can't get used to getting tired so quick.  Hair is now coming out every time I tug on it.  I am pretty sure it won't last past this week.  I need a new drivers license so I am just hoping it will hang on for that. You ladies are all so strong you are an inspiration for for me.

I am hoping to go to the cancer center and look at some wigs and go to the make up session at the end of this month also. I need to call and get set up otherwise I am going to need to wait until the End of February. I am thinking next weekend will be my mohawk and shave.  Yes my hubby of 30  years is a keeper. He is very worried at this point and really doesn't care about hair or boobs or anything, he just wants me better. I feel bad sometimes for him I have seen him cry over some of these diagnosis. Well better get off and back to bed.

Thanks for all the positive posts!  Life during chemo, not necessarily a nightmare!  

I actually feel a little surreal - exposed every cell in my body to poison on Thursday and now changes are taking place where I will be bald in a week or two, chemopause, etc. and yet I feel pretty normal.  I've been getting quite a bit of sleep and that makes a big difference, usually I'm chronically sleep deprived from going to bed too late and getting up too early.  And today's the last Dex day, so tomorrow might be different. 

I think the MO team decided that I did "well enough" with the nausea and don't need to fight the insurance company over the Emend.  It really was "just" the 3-hour episode and there are probably a couple of things I could have done differently.  As posted earlier, I should probably have taken it a little easier on the eating and drinking in the couple of hours after the treatment, and taken an Ativan when I felt the quease coming on, since I was settling down for a nap anyway.  The Zofran, Dex, and Ativan have kept things under control since then (Compazine was useless).  They also have a note on their standard handout that if you had nausea and vomiting on the previous cycle, take Ativan the night before and the morning of the next treatment.  

The good news is I've had no repeat since that first episode, although I worked remotely Friday just to make sure (and so I could get naps in).  I've also tried not to be too timid with the eating, just careful, and so far there hasn't been anything I haven't tolerated.  Even treated myself and daughter to a Starbucks outing yesterday.  Haven't lost tastebuds yet and nothing tastes weird so far.  

Encountered another Stage III BC survivor in the Starbucks (hey! let's compare our number of positive nodes in public!), who heard snips of my daughter's and my conversation.  While she was very nice, she scared the bejesus out of me by describing permanent SE's from her chemo and rads.  And that just because I haven't experienced LE yet, "it's still early."  Also, I got the impression she gave up on recon and perhaps her career as well.  I presume she meant well, but it wasn't well timed and I was in some distress last night.  Hoping to snap out of it today.  

Will be thinking positive thoughts for you all. 

paloverde - thanks for your note about hats and such. I've had long shiny hair my whole life and I'm embarrassed to say how much of a loss this will be for me. First AC was Thursday, so I know I have to make some decisions soon. A girlfriend took me to a salon that makes human-hair wigs, really beautiful ones (I think the line is called Follea), but they just made me feel like a guy in drag. Plus, the price tag - $3000 and even if insurance covers a portion, I can't justify it. I'm ordering lots of soft, knit caps on Amazon and hoping to start with that.  I won't be working during my treatment, but I have 2 little kids who are anxious about having a "bald mom" picking them up at school. 

5 days out from my 1st TC infusion and I'm feeling pretty good.  The toxic waste contamination feeling seems to have past.  I am enjoying using this as the excuse to get more rest and not place too many demands on myself.  There is such of range of individual differences that I try to look to those who manage with favorable outcomes and not become too frightened by the horror stories.  Sometimes that is easier said than done.  I'm quite nervous when I'm out in public during cold and flu season.  I feel like everyone around me is coughing and sneezing as I bury my face in my scarf.