January 2013 chemo group

LeeA

Ha ha!  Is that Prince Harry on the right? 

Bryona

He could be Prince Harry if it were Hallowe'en. Incidentally, here's one of our favorite games to play on Hallowe'en: we sit at our favorite espresso stand on Capitol Hill (Cafe Vivace 321) and guess if the clothes people are wearing are a costume or a fashion statement. Because a purple tutu and combat boots -- on a person of any gender -- are not an uncommon sight on Capitol Hill at any time of year...

SeattleMama

ROFLMAO!!!  Prince Harry :P
We should totally do that Bryona 
 BTW:  how was yesterday?  Everything go smoothly?  You feeling alright?

jocanuck1951

Yes Harry! I'll never complain about a bad hair day again, I know, not for a very long time! Blue....

jocanuck1951

Slow day today (moi)....seattlemama NED!

SeattleMama

Hiya Jo, how are you doing today luv?

jocanuck1951

I'm good Seattle! Don't let go of NED...if I see him I'm gonna hold on tight lol!

SeattleMama

Good to hear it, Jo.  These Navybeans are making me ache.
Yea, Ned, he's one dance partner I'd like all of us to be chained to

kingboo

Good morning ladies. (I am in Los Angeles)

Had my last chemo past Friday and going in for my neulasta shot this morning.  Hope for minimal SE.

I have a rad doc appt in 3 weeks.  Apparently I will have a few options.  I will post and let you know.

Also the doc clears me for a de-tox diet in 3 weeks. I told him I want to get rid of these toxins in my system. I will also try the biotin for hair grow. I will post and let you know if it works.

On another note, a friend of mine suggested that I drink a couple sips of the salt and baking soda water we gaggle with for white and waxy tongue. It seems to help a little.  Try it and see for yourself.

Take care, and have a good minimal SE day.

Jean

SeattleMama

'Morning, kingboo  YAY on last chemo {{happy dance for you}} { waving to ya down south }
I want so much to start the detoxification process....I'm glad you were given the Go Light.  I have more chemo to go...

I think you are correct about the baking soda/salt mouth rinse.  I actually ingested the baking soda (no salt) concoction pre-surgery, to get my body's pH alkaline, and once I started that, my tongue was 'oxygenated' and never white, dry again. 
Wishing you and everyone minimal SE today and every day

LeeA

Congratulations on finishing chemotherapy, Jean!

ywheels22

What is the biotin and how do you take it, how much? Any info would be great! Thanks!

jocanuck1951

Happy for you kingboo! What is the detox diet...I'm hoping for Ned at some point! thanks, Jo

Oliverhog

Skigirl72, yep.  The tape is over the tattoos.  That's why I thought it was odd.  They put three tattoos on me.  One in the middle of my sternum and one on each side of my body, actually a little closer towards the back than right in the middle of the side, about a hands width below my underarms.  Then they put the tape over the tattoos.  Then they put red marker marks on top of the tape.  I had this done on Friday, 4/5.  I still haven't gotten my first appointment for rads scheduled yet and I'm eager to get this show on the road.  School lets on on June 3 and I do not want to have take my 8 year old son down there with me.  I don't know how I'd pull that off since the waiting areas after we get gowned up are single sex.  Hopefully my husband will have been called back to work before then because we're already in the poor house.

Cancernoway, that cricket story reminds me of my sleeping issues on St. Lucia.  They have these frogs that croak this fairly high pitched sound at night.  Didn't know this before I made reservations for us at the Ladera.  The Ladera is a hotel that's built into the side of a mountain there overlooking the Pitons and the ocean.  Each room only has three walls; the fourth wall is open to the view.  Needless to say, the noise was unbearable.  We had such a hard time sleeping because it sounded like the creature making the noise was in our room.  We quick turned on the lights and saw three lizards on the walls.  We thought it was the lizards.  We couldn't reach them so we were throwing washcloths and towels at them to try to get them to fall of the walls so we could throw them outside.  We never caught the lizards and it turned out to be frogs outside in the forest surrounding us.  As beautiful as that place was, I'll never book another night there again.  I don't know other people, including the ones who live there, sleep through that.

Debbie, I flew to the Canary Islands and was so close to Morroco I could taste it.  We didn't get to go, though.  That must have been really neat.

Bryona, I always have you in the back of my mind when I post.  I try not to split my infinitives, although I can't figure out how to construct this particular sentence.  I try to be mindful about its and it's.  Ay ay ay.  Like, the English teacher is critiquing all of our posts!  (I just had to look up 'critiquing' to make sure I spelled it right!)

Mandy, I just can't believe it.  I feel so bad for you.  I'm the one who ends up with the reactions to virtually every medication I get.  Most are tolerable, but they're worrisome.  I can't even imagine having something like that happen to me.  You poor, poor baby.  I hope the rest of your treatment goes well for you, Sweetie.

Seattlemama, whoever says BC isn't painful must be nuts.  Mine hurt a lot!.  I had to put ice on it after taking Tylenol and then Motrin with no effect whatsoever. 

SeattleMama

 JoCanuck1951 this is the one I'll be doing.  Found it after much, much research right after diagnosis.  There seems to be a correct order of detoxification.  Its systemic.  Like, don't detox this before you detox that.  It makes sense.
http://www.mnwelldir.org/docs/detox/clean.htm 
I want to add to this, GOMBS diet (Greens,Onions,Mushrooms,Beans/Berries,Seeds) from Dr. Fuhrman.  That is what I do now with my juicing.  BUT, pre diagnosis, I watched Dr. Fuhrman on PBS and had taken notes.  Around the same time, I met someone who had treated his grandmother's tumors with MUSHROOMS!!!!  He actually got rid of them!  I also started with a heavy intake of mushrooms during neoadjuvent chemo.  My initial tumor shrunk in half, my nodes shrunk in half.......and then the chemo got me lazy following my diet.  I canNOT confirm, but after becoming lax on the diet, that is when the 2nd tumor blossomed and cancelled my chemo schedule and moved my surgery up.  If I could do it all over again, I WOULD HAVE KEPT UP THE MUSHROOMS, DEFINITELY!  They are the second most important ingredient in my juices now.  Spinach (greens) is first.

Oliverhog THANK YOU!  I was quite happy to hear in all my PRE diagnosis that if its painful, it usually isn't cancer.  Well, well, well.  And that was from the cancer medical community.

kingboo

Please do your due diligence on all these.  I won't take too much biotin since it can make you break out in acnes. AND PLEASE TALK TO YOUR DOCTOR FIRST.

http://beautysupply.about.com/od/hairtreatments/p/Biotin-For-Hair-Growth.htm

http://www.webmd.com/vitamins-supplements/ingredientreview-313-BIOTIN.aspx?drugid=313&drugname=BIOTIN

These are shampoos that can also help: Biotin shampoo, Nioxin and Viviscal.

As for de-tox, I have done the "7 day detox miracle" by Peter Bennett and Stephen Barrie before. You eat veggies and fruits, no meat, oil, sugar with some exception like no grapefruit, and only mung bean and garbanzo beans for 1 week.  I recalled feeling better.  All fruits and veggies make you regular and flush you system.  If you want more info I can scan the important part of the book for you.  Just let me know.

Jean

jocanuck1951

Thanks ladies, I bookmarked and noted and when NED visits I'll be all about detox!



Seattlemama I will do your GOMBS Diet, 100 yrs ago I followed dr. Fuhrman re: cholesterol. Very smart dr.



As well Seattle, just like Oliverhog, my doctors said pain in boob = not cancer...I was ready to cut it off myself! Full of cancer..IV at the gate. I didn't even have a lump, nothing palpable at all....after the 2 Core biopsies in lefty I bloody well had lumps!



Thanks, xoxox Jo

Anonymous

Jo~~I had pain as well. As a matter of fact, that's the reason I realized I was late for my mammo. When I went for that, the right breast wasn't uncomfortable at all, but the left one hurt like crazy. That's because it was a 5.6 cm tumor!



Whoever said, it doesn't ever hurt is crazy!



Paula

Oliverhog

Jo, I had been to the OB/Gyne for yearly exam on 2/16/12.  He did the full breast exam and got nothing.  I'm like a 32b on a good day.  He gave me the 'script for the mammo.  I put it off because my 93 year old grandfather was in the hospital for jaundice. They found a mass on his pancreas and had a hard time getting the biopsy done on it.  They finally got the biopsy and found cancer.  He opted for chemo to live as long as possible for my 92 year old grandmother.  My sister ended up having a rupture in her colon in May.  When it healed, she went through a seven hour surgery and 11 day hospitalization.  I ended up in the hospital with lung problems in July.  My grandfather ended up in the hospital at the end of July with a minor stroke, developed some other problems and in late August was sent to a nursing home for rehab.  Though family members visited him daily and at multiple times during the day, he ended up getting so severely dehydrated that he went into shock.  He ended up in the hospital on life support.  We took him off the support and brought him home to my grandma for about eight hours before he passed away on 9/14/12.  I ended up back in the hospital with mycoplasma pneumonia on 9/30 and was there for eight days.  While I was there, on 10/2/12 I asked the physician's assisant to feel this painful, movable lump on the outside upper edge of my right breast.  She felt it and thought it was a fibroadenoma.  The hospitalist, the pulmonary doctor and a surgeon all came in and felt it.  They all thought it was a fibroadenoma but had me get an ultrasound of it.  There were little stellate things coming off the lump, which led them to believe this lump had invaded the surrounding tissue and was unlikely to be a mere fibroadenoma.  I had to live with that damn lump after they did multiple imaging and squishing tests on it (breast MRI, multiple images under diagnostic mammography, another ultrasound and then an ultrasound guided core biopsy) until they finally removed it on 11/30.  

Nicole503

Congrats on finishing chemo yesterday kingboo! 

I'm a little jealous that you got neulasta after your last tx.  I was using neupogen but my MO cut me off after the last treatment since I wasn't getting any more chemo.  I have to say, my fatigue and breathlessness since my final Taxol has been much more like my AC treatments than the other Taxol treatments. It's a bummer to be back in fatigue land.  Being done with chemo is nice in theory, but I do not in any way feel done with chemo in reality.  Today was slightly better than the last 3 days so I'm hoping that tomorrow (2 weeks post final chemo) I will start to feel the upswing gain some momentum.  I want to FEEL done with chemo!

LeeA

Nicole, I'm sorry you didn't get the neupogen following your last treatment!  I really don't understand the logic in that . 

I hope you start getting your energy back SOON!

Oliverhog

That is interesting.  I think I did get the Neulasta after my last treatment.  I was going to say, "Oh, because she didn't need it.  They need the white counts to be high enough in order to give the next treatment and she's not getting another one."  But, then again, why did I get one?  Weird.  Maybe because I'm a "special" case, as in bad lungs and no spleen?  Nicole, congrats on being through.  You'll start feeling better maybe by week four.  Of course, I'm not the best guage of normalcy.

SeattleMama

Oliverhog I'm spleenless too - for the past 22 years - {{putting hand out to shake - Nice to meet ya}}

Something new for me - neuropathy...legs and one arm and FACE...I just asked someone local who had it and she had acupuncture, said it helped.  I'm trying to decipher if it is from the Taxol (I finished that over a month ago) OR Navybeans ?? (I've only had 2 rounds?)  OR combination of the two.....who the heck knows.  Its very strange though.  I wasn't expecting that since I didn't really have that SE with any of the neo-adjuvent.

Oliverhog

SeattleMama, I'm shaking your hand back.  For me, living without a spleen has been a major issue.  The scar tissue in my lungs from previous chemo and radiation for Hodgkin's makes me quite susceptible to lower respiratory infections.  Because I don't have a spleen, it's really hard for me to fight off viral infections and infections caused by encapsulated bacteria.  As for the neuropathy, I'm not sure if navybeans can cause that or not.  I would have thought that the taxotere or taxol would have done that to you and you would have had signs of it before finishing that chemo.  

I remember seeing some add in a magazine that described or pictured neuropathy like being stung by bees.  That was exactly how my fingertips felt, like a bee had just stung me.  It wasn't constant.  It would happen intermittently and out of nowhere.  The bee sting sensation is gone but now my fingers feel a little painful and sort of numb.  A few toes feel a little painful, too.  I'm really hoping this goes away.  I wonder if your face pain could be caused by the beginning of a cold sore.  Sometimes a few days before I get a cold sore on my lip, I get weird face pain on only that side of my face.  Hope you get to feeling better, Sweetie.

Rdhnow

Is there an April chemo group? I had my first chemo today and am just wondering what to expect. Got through the treatment just fine, what's next?

Skigirl72

Hi Rdhnow- there is a April 2013 Chemo group

 http://community.breastcancer.org/topic_post?forum_id=69&id=802112&page=1

I jumped on there a while ago to offer some encouragement. You can do this. I had 4 rounds of AC (every 3 weeks) and I've had 3 of 12 Taxol. Offering up some support when you need it! Feel free to ask anything. If I don't have the answer, I'm sure one of these lovely bellas will....

Oliverhog

Rdhnow, there's a lot of material in this forum 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.

jocanuck1951

Oliverhog!!!! That is the absolute BEST, most informative, comprehensive, in depth, read ever (for me) on BCO.....well, anywhere for that matter.....you took everything and made it so easy to understand. Thank you!



I hope all the new unlucky ladies that are wondering around this wonderful informative site gets to read your post first. Would have saved me MONTHS of research as I was to terrified to retain anything anyways...I would have saved your post to re-read as needed. Still will! Xoxoxox



Rdhnow I wish you the best....we have the smartest people on the planet here! This site enabled me to formulate & prepare reasonably intelligent questions to ask my

oncologist regarding my treatments options....actually, after my mamo I started lurking and learning here. Jo

jayjayc

Oliverhog,

WOW...... what a brillant and informative summary, I'm totally impressed.... you need to copy and paste it to everyone of the newer groups....

Don't suppose you have the same sort of information for rads (I just started this week)....

ywheels22

Rdhnow: Do you miind tellng what chemo you are getting? That will help us narrow down the possible SE's and some suggestions how to ease them when possible.

After my third AC I got thrush in my mouth that hung on until my 1st Taxol. I take Cultracell probiotic to help with the gut issue that thrush causes. I also take Senacot S for constipation duriing the tx days.

I exercise when I can and at times, make myself do a little something. I believe it helps with the muscle, joint and bone pain that can come with some of the tx and the WBC shots. I just say "Kiss my ass, chemo," and go do something. But I do have down days, usually day 3-5/6. My theory is a body at rest, stays at rest, a body in motion stays in motion. It is not possible some days to be in motion so I don't beat myself up. Do what you can and what you are comfortable with.

All of Oliverhog's advice is spot on. But remember we all react differently to the tx's. Some seem to do good with some things and others have a little more struggles. But we are here for each other and that is what helps the most. Keep us posted!