April 2013 Chemo Group

Up for third time tonight and can't get back to sleep, so of course I go to the place where everybody may not "know your name" but they certainly know what you're going through! I,too, have a difficult time keeping everyone straight, but feel bad not responding to at least some posts directly. I think we above everyone else u understand we do what we can, and sometimes there are people or posts that connect us and warrant response.

So, I know I'm way behind, but prep for chemo has had me busy physically and drained mentally and emotionally...



Heather- after my dx for rt. breast, my surgical onc. assured me that success & recurrence rates for my type were equal for mastectomy & lumpectomy w rads, so decision was mine. Knowing my worry level, I was leaning toward BMX, and several women I talked with confessed to wishing they'd had both so they'd 1) "match" better & 2) reduce testing & worry involved with remaining breast. Then, a small tumor was found in my left breast in an mri a couple weeks after I got rt.diagnosis. I think I was even pretending to myself that result of genetic test would decide me, but it wasn't long before I caught myself saying I would probably opt for BMX regardless. I didn't have either BRACA gene but prob. still some genetic link. My only regret related to BMX is this: I wish I was thin because then I would not be so disproportionate and would have considered no recon. I'm hating expanders & will have them almost a year. Sorry to ramble...



Kobrien- I totally am feeling same about this s@;!. Case in point, I normally am not a "cusser" but finding myself having to bite my tongue around my kids! It's just seeming like TOO MUCH, NEVERENDING CRAP!



I already have lymphedema starting, depite taking all the steps I could to prevent. Had it wrapped by PT ... NOT fun.



Started chemo today. Three hours after scheduled, as if I needed more time to stress. Actual process wasn't bad w port. SEs starting already??

Can't sleep, DRY mouth, belching & trapped gas feeling, feel hot & cold at same time. Took Claritin to prevent possible pain from Neulasta tmrw. Need for allergies anyway, so no harm.



Thanks to all for your honesty and being there. Hope we all find ways to make peace w our changing images, and keep SEs at minimum. I have moments of "really? Are You sure?" but truly believe God doesn't give us more than we can handle. Sooo.... we must be some of the strongest people on earth;)

Dede, just seeing your post clearly now. Some advice a friend a year ahead of us gave me- because the entire follicle comes out, she recommended not shaving to the skin, but leaving like an inch (I know, not the dream cut!) and letting that last bit come out on its own. Otherwise it can get very stubbly and sensitive, with bumps possibly.

Whatever you do, best of luck! I got mine cut very short for first time in life Friday, and I've already gotten used to it. At least we should have some coverage back by winter cold! That's as positive as I can be right now, as ive never looked good in hats and i have a big "banana head!" I will just have to prove beauty comes from within. I guess that means i have to be positive?!

Heather - I was first diagnosed in 1998 with DCIS in the RB.  I elected to have a bilateral mastectomy with reconstruction so I would not have to do this again. I did not have to have chemo/radiation.  In January 2013 I was diagnosed with a recurrence with a 3.2 cm tumor on the right side just above my RB.  I had a lumpectomy and am undergoing 6 chemo treatments over 18 weeks and Herceptin for a year.  Also, radiation after the chemo. This was a complete shock to me.  Unlike many on this site, I am fortunate that I am retired so do not have to deal with work or little ones to care for.  I am single, live alone and am very independent.  My first chemo was on April 3rd and had minimal SE.  My next treatment is on the 23rd.  On Monday I had my wig "styled" and head shaved as wanted to take control of something.  I expected the shaving to be very traumatic, but surprisingly it went well and I was not at all emotional.  I am determined to be the cancer lady who holds her head high and wears a big smile.  What do they say - sometimes we have to fake it to make it.  All of the brave and wonderful women on here give me strength!!   

Thank you everyone for your frank talk about mastectomy choices. I know either way, it is not an easy decision. There are no guarantees, but I have started to see my breasts as "the enemy" I am engaged in battle with; probably not emotionally healthy, but all the same. I know I will do it despite my BRCA results. I worry about the emotional impact of losing both breasts, I am single... But, the peace of mind it will bring is worth far more to me (and my teenage daughter). I really appreciate reading everyone's decisions and how they got there. Happy day and welcome all newcomers! Staunching myself for chemo #2 tomorrow, out to buy some Claritin today!

                                                                                     Heather

Welcome Rdhnow....drink LOTS of Water....Rest...and LISTEN to your Body....

Hello, April 2013 group.  Someone asked a question in our January 2013 group about what to expect during chemo.  I responded with the info below and a few of the women in the January group suggested that I re-post this in some of the groups that just started.  You might find some of the info helpful:

There's a lot of material in this forum (the January 2013 chemo group) to read through to find out what the rest of us in the January group went through.  It seems like a huge issue was that of constipation.  Take whatever your MO recommends and be diligent about it.  Some even took the anti-constipation meds before they got their infusions.  If you're getting taxotere or a taxol, you might want to wear dark polish and possiby consider icing your hands during the infusion.  A few of us have had problems with very painful fingertips, the nails start turning blue at the base and gradually get more and more bruised looking.  

Fluid intake has also been an issue.  I figured out a fairly easy way to stay hydrated after I finished chemo.  I drink water from a bottle that holds almost 17 ounces.  I sip, swallow and count to five, sip, swallow and count to five until I've finished the bottle.  It takes less than 3 minutes to drink the whole bottle.  Spread your water drinking out throughout the day and if you drink it that way it takes you less than 12 minutes.  I think what makes it tolerable is the fact that I was focused on the action rather than on the water or the taste of the water itself.  

Protein intake is really important to help your body's cells heal from the chemo, because, as I'm sure you know, chemo is not selective.  It works on cancer cells because many of them have high metabolisms, meaning cancer cells will ingest or take up more of the chemo than the rest of your body.  The cells that have a higher turn over rate metabolize more of the chemo than those with a slower rate.  Therefore, you'll find that anything with epithelial cells, like your mouth, your skin (hair follicles), your GI tract, the cells that produce white and red blood cells, will be affected by the chemo.  Costo sells a chocolate or vanilla 11 ounce drink called premier protein that contains 30 grams of protein.  Fage yogurts have 10 grams.  Nature Valley peanut butter dark chocolate bars have 10 grams.  Most of the women seem to be able to eat peanut butter and taste it through the havoc chemo wreaks on taste buds.

Use Biotene toothpaste and mouthwash because they're gentle, but keep your mouth moist and seem to help keep you from getting sores in your mouth.  They may also help with the taste issue.  One of the Bellas mentioned something about chewing Biotene gum during the infusions and she thought that worked.  If not, some recommend baking soda and salt in water to rinse and gargle with a few times a day.

Most of us expected to lose our hair and did except for the few who used the ice caps.  We pretty much cut our hair short, then buzz cut it before losing it.  The ones who lost their eyelashes and eyebrows started to lose them a few weeks after the chemo ended.  If you're going to lose your hair, expect it to happen between days 12 and 20 or so after your first chemo.  Make sure you take the steroids as prescribed because they minimize allergic responses to taxol based chemos.  

Also, many Bellas had problems with heart burn.  Many of us take probiotics for the gut issues and swear by them.  I had very minor problems with constipation and I attribute that to the probiotics because I rarely took anything else even while I took percocet for pain.  

If you get Neulasta to boost your white counts, taking Claritin before and daily for several days after the injection seemed to help a lot of the Bellas stave off the bone pain.  If you get to your next treatment and your white counts are higher than the upper limits of normal, the Neulast may have been too high of a dose.  Having really high white counts when you don't have an infection can make you feel pretty yucky.  Ask to have the dose of Neulasta reduced if your white counts are high and you feel crappy.

There's been a bit of a debate about taking anti-oxidants while going through chemo.  Some did and some didn't.  Chemo can affect your liver enzymes (particularly the ALT and AST levels) and some MOs do not recommend taking single amino acids like glutamine during chemo.  Many sources say that glutamine should not be taken in the presence of elevated ALT and AST levels.  

Chemo seemed to cause a great deal of fatigue for most of us, although several still managed to exercise including hiking and going to the gym.  I don't know how they did it, but they did.  One of the Bellas turned us on to a head covering called a Buff.  You can get them online or in stores.  REI sells them.  It's like a tube top for your head that can be worn like 12 different ways.  Also Voguewigs.com seems to be a popular site for wigs ranging in price from $30 to over $1000 with several in between that range.  Everyone seems happy with their wigs and half wigs.

Many of us also experienced our worst side effects with treatment number 3 and by treatment number 4 many of us were constantly in tears.  It's O.K. to cry.  It's O.K. to rant and rave on this board.  No matter what you post, someone will always respond.  Many of us feel like we might not have been able to make it through this without our group and we all feel very close and very fortunate to have each other.  The board offers something we don't get anywhere else.  

You might want to try the March 2013 chemo group because some of them have probably already had their second treatment and the complaints, worries, info on that group is probably more relevant and timely for you.  Plus, as of today there were only 12 pages of posts to get through to get yourself caught up.  

Best of luck to you.

Oliverhog-- excellent post and suggestions.. Will keep reading this over and over when I begin my first chemo.. Should be in a week or 2 and man I am terrified!

Hi all! Aside from some stomach issues and lost taste buds week two has been ok. I still have some fatigue too but not so bad. Next week will be my week off from Xeloda and I am so looking forward to it! Also, my daughter turns 1 on the 23rd and we're having her party this Saturday. Hope everyone is doing ok.



Deyla

Kobrien, I was pretty frightened at the prospect of chemo, too.  I shouldn't have been because I've been there, done that when I was 26.  I had radiation to the chest for Hodgkin's in '85 and 2 1/2 years later, had a recurrence that had to be treated with chemo.  Turns out the thought of it is actually worse than the actual event itself.  Most of us have been constipated at one time or another.  Most of us have been sick to our stomachs at one time or another.  Most of us have felt various pains at one time or another and most of us have been really tired probably on more than one occasion.  It will suck.  You'll probably have problems with your taste buds.  But, I think the biggest issue for most really is the hydration issue.  If you stay well-hydrated, most of the other symptoms are more tolerable.  If you're otherwise healthy, it should't affect you too horribly bad.  Pay attention to your body.  Know that your team is always available to you if something crops up and you need medical help.  And, if you have good support at home, you'll be fine.

 One more thing.  That treatment for the Hodgkin's caused a great deal of scar tissue to develop in my lungs.  It left me with 33% of predicted normal lung capacity.  I had been in the hospital after being diagnosed with mycoplasma pneumonia when I was diagnosed with the BC.  I went from eight days of being confined to a hospital room (isolation) straight to all the crazy tests and surgery and then chemo.  I had gotten myself to the point that I was able to walk a half mile inside my house.  I was terrified of the effects the chemo would have on me because I knew it would knock me down really low and it did.  But, I'm feeling much better now.  So, I can do it, you can do it.

First chemo is tomorrow and I can't sleep. I was diagnosed back in September 2012 and kept my BC private for a long time.  I didn't want to hear stories about everyone's sister, aunt, neighbor etc who had breast cancer and I didn't want people to treat me like I was dying. People generally don't understand how many different breast cancer types there are and the implications of each. I certainly didn't and I found it very difficult to explain to others. I also didn't want to deal with the pain and worry of others- I had enough worry of my own. So I told a few trusted friends and only a few family members. I figured the rest would find out after I had completed surgery and radiation. It wasn't until I got the surprise chemo recommendation in February that I began to rethink my need for so much privacy. So as of now, my friends and family are all aware of my diagnosis. I recently (today) spoke to my boss and only because I will be taking some planned days off for chemo treatments and probably missing some other time when not feeling great. Only two of my coworkers are aware of my diagnosis and I plan on keeping it that way. My delay in sharing the news was the right decision for me. It gave me time to accept my diagnosis, and become educated about the disease and my treatment plan.  I am a very independent person (single for 6 years with two daughters away at college) and don't like feeling needy. But it is comforting to know that I have large network of family and friends who are willing and able to help should I need it in the coming months. I hope that I don't and my side effects are minimal.

Indenial, I agree, the arrival of spring has been a real boost to my spirits.  I've been working outside in my garden in my free time, something I've enjoyed doing for years.  I've always joked that gardening is my "therapy", and now I'm finding that to be true.  Just hope I have the energy to continue once chemo starts.

Looking for a little help from experienced posters: I can't seem to find any instructions on creating a sig. Is there a post with that info somewhere, or can one of you talk me through it? I have my initial path report, but it doesn't seem to be in a format that maps very well to what most here are using.

Thanks!

Hydration tip I just came up with: As long as you're at your computer, every time you click on a new page or message, take a drink. Seems to be working for me, for now.

Good Morning Ladies and welcome all newbies....Had a Great day yesterday....MY Birthday...not how I expected to 'celebrate'....dr's apt in the am...teated my self to a yummy lunch ....quino stuffed avocda with roasted chicken on top... gift from my dad, a Home Water Delievery service....and work..TONS of birthday greeting on Face Book, Text's and private messages...

Well when I  work up this morning...and have almost NO VOICE......no temp...just squeeky sounds coming out when I try and talk...ov vey....gonna take it easy and couch it this morning......I'll decied if I'm gonna try and go into work around noon.

Hope yall have a great day

Ladies, I need help with "hat etiquette".  I was in traffic court with my daughter Tuesday (still sporting my own hair), and before the judge entered the room someone approached a young man and told him to remove his hat before the judge came in.  He did.  I have many hats with the strips of hair that you velcro to the inside, this will most likely be my "go to" look for the next year.  I would just die of embarrassment if I had to take my hat and hair off for any reason in public.  What do you do?  I'm thinking of times I've been to sporting events and your asked to stand and remove your hats for the Invocation, the Pledge of Allegiance, and the National Anthem.  Do you get a pass on that?  What about airport Security??  I'm sure there are no hard and fast rules for this, but I am concerned enough about it that I'm looking for opinions and input.  Thanks!