January 2013 chemo group

cancernoway

Courage is being scared to death, but saddling up anyway. - John Wayne

Oliverhog

Skimommi, the first time I was treated for the Hodgkin’s in ’85, I was treated with radiation to the entire chest, neck and shoulder area for five days.  The remaining three weeks, the RO aimed the radiation at the lymph nodes between the lungs, across the top portions of the lungs, at the nodes above my collar bones, in my underarm area and my neck.  Two years later, I didn’t feel like I had the same ability to recover between intervals when I’d run.  I had an exercise stress test done that indicated my lung capacity was at 80% of predicted normal.  A month later, I was diagnosed with a recurrence.  I was treated with chemo that is toxic to the lungs.  So, between the chemo and radiation, my lungs continued to scar over the years, resulting in repeated bouts of pneumonia which caused bronchiectasis, which can cause additional decrease in capacity.  My understanding of the radiation for breast cancer is that the radiation is being directed at the surface of your chest rather than inside your chest.  I think the risk of developing lung issues from the radiation is extremely minimal.  Even though I’ve got 33% of predicted  normal capacity, I wouldn’t take radiation off the table as a treatment modality.  I’d rather risk losing a tiny bit more than risk recurrence of BC. Also remember that this was 28 years ago and radiation treatment is much more advanced today than it was in '85.  Hope this helps.

Oliverhog

Bryona, it’s hard to believe how expensive this treatment is.  It’s running about $20,000 per treatment for me.  After going through the chemo for Hodgkin’s way back when I’ve always said I wouldn’t wish this on my worst enemy.  And here I am being treated for the third time.  Ay ay ay.

Cancernoway, Keith Urban could definitely be a cabana boy!

Skimommi, I’m still having problems sleeping, BUT…not because of breathlessness anymore.  Woo hoo!  I’m glad that’s over.  Today, I almost felt like a normal human being.  I am so shocked by that.  Then I just had to remind myself that I’ve got a respite from feeling like s**t for a whopping seven days until I do it all over again.  Ick.  Thanks for the offer of tissue, LOL.  Apparently, they do that in Europe.  My sister is the complete opposite of me – several inches shorter and quite a bit heavier and very, very busty.  She volunteered.  It would have made both of us pretty happy.  Good luck at the bar tomorrow. Here’s a toast to minimal SEs and a fantastic steak dinner.

Kiwikid, congrats!  Oh, baby girl I hope these SEs resolve themselves quickly and you start feeling better.

LeeA, I had no idea it had straight-edge properties either until I noticed that at the end of the stream, it sort of dribbles off the low point of one of my butt cheeks. Not digging that.  I constantly worry it’s going to shoot out from under the toilet seat one of these days!

As far as anyone on this site having enough spare tissue to donate, none of you ladies look like that’s the case.

Mandy, I had a skullet!  That is THE best way to describe the look I had going on when I pulled most of my hair out on day 12 after my first treatment.  I was laughing my a** off at 2:30 in the morning, came into the bedroom, my husband stirred and heard me laughing but thought I was crying.  He reached out to me and I turned fully intending to say, “Look at me me,” and laugh.   Instead, I burst into tears.  But, I had a skullet.  As far as the situation with your six year old son goes, that just about broke my heart reading that.  I have a seven year old son.  I told him in advance that I was going to lose my hair.  When he got up that morning that I pulled my hair out, he saw it in the trash and asked my husband if I was bald.  Dan said yes.  Peyton then said, “That’s O.K.  It will grow back before summer so she won’t get burned.”  When he came home from school, I’d cut the skullet part off so I had a very thin short boy’s cut.  He laughed.  My hair continued to fall out that day, so I had my husband buzz it.  When he came home from school, I showed him my head.  He laughed again and said, “It looks funny.  Not weird.  Funny.”  And that, fortunately,,was the end of it.   You and your son will be O.K.  Every parent goes through a time when they are hurt by their children’s words.  I remember the first time my son said he hated me.  I was crushed.  And also a little dismayed that he’s already said that by the time he’s seven.  I think it was wise that you recognized that you put words in his mouth.  Reassurance that losing your hair is short term, that it will grow back and that it doesn’t mean anything will probably help.   I’m so sorry you and your son had to go through that.

JulesDenver, I sometimes wonder if that’s how I ended up getting my MX first, too.  I’m a little ticked about it  There have been times where I felt like it was more important to view me in terms of statistics than in terms of what is best for me.

Smethot, good luck tomorrow.  I’ll be praying for negative and minimal SEs for you.

LeeA

MTJulie, I had heard of the G word but FUPA was a new one for me!  I had to go back and search the archives to make sure I had the acronym right so I could relay it to my husband (ha ha). 

Mandy, it sounds like you're handling things well with your son.  It's so hard to imagine how it must be for our children.  My son (who is 25) made it very clear one day that it was hard to hear me joking around about things related to my mastectomy.  You just never know...  I felt so bad afterwards.    On another note, I know we have touched on skin problems before.  I'm not sure if the chemotherapy is helping my skin or what.  If it is - it would be really strange and btw and fwiw, any mention of my skin problems always brings about a lot of knocking on wood.  On the other hand, it occurred to me that the improvement might have come about because just prior to starting chemotherapy I started using a Clarisonic skin brush.  Who knows - but I do know that adult skin problems are a real PITA.  

LeeA

Oliverhog!  I am laughing so hard right now!  In fact, I laughed so hard it echoed in the room I'm in!  

Gales of laughter!  Mainly because, I have noticed the same thing!  

macyhen111

Hahahaha @ MTjulie FUPA HILARIOUS!!!!

Bryona

Oliverhog, THIS is why there is no such thing as TMI here. I think I may have pulled a muscle from laughing so hard! And it's sweet that you think we don't have any tissue to donate, but I'm going to confess that's because my avatar is a picture of my face, not my oh-so-plentiful ass.

cancernoway, I'm pretty sure they told me I had to wait 3 weeks between chemo and rads. I don't finish Taxol until June 7 (oy vey iz mir!) and I have the same rads schedule as you (25 full + 5 boost), so I won't be finished with rads until mid-August. And I've just realized that's eight months of treatment. Well, hell. No wonder I'm cranky! 

I like to imagine I had exactly 46 cellular insurgents left in my body after surgery, and each round of treatment (16 chemo, 30 rads) is killing one of them. That way this all has a purpose.

Skigirl72

Where would I be if I never found this site??? I am laughing so hard at our tangents!! We have learned so much from each other. Much more than medical knowledge. We've learned from each other that it is OK to laugh and make fun of yourselves. It's a crazy ride we are on. I will NEVER be able to go into a wig shop and keep a straight face. All I will be thinking about is "holy shit I'm in a room full of Cousin Its"... I NEVER want to drink anything red ever again. I know that peeing can be a challenge with no hair. No one else will ever understand the crack monkey, drinking to much at the bar and sharing cabana boys..... LOL I am glad we all found each other.

Rhonda2

Cancernoway,



I am on the same schedule you are on. Third TCH treatment tomorrow. I will also finish radiation on July 22nd. I am not looking forward to tomorrow because most posts say that the third has more intense side affects, yuck! Lets kick butt and kill this cancer.

LeeA

Rhonda, overall, I rebounded the quickest from treatment number three (TCH).  

I have no idea what will happen with numbers four (just had it today), five and six - IOW, the great unknown awaits.   

Zorina

Skigirl72  - Yes,  I understand why you would flip out if your last A/C was delayed.  I flipped out in the doctor’s office when they delayed my start due to a temperature and cough.  I made the MO laugh when I said that I want my drugs,  and I want them now!  Good luck with the last one—I was amazed how much that last treatment boosted my morale.   Even though you still have Taxol, you really feel like you are beginning to see the light at the end of the tunnel.

SEs that I would like to have:  Chemo knocks out my adult acne and the hog bristles on my chin.

Zorina

Updated:  Things you learn while undergoing Chemo:(feel free to add to this list)

1. Nose hairs keep you from dripping
2. Pubic hair allows you to pee straight (at least for some)
3. Cuticles help your nails slide as  they grow
4. Who your real friends are...and the best ones will share their Cabana Boy with you
5. How to knot a headscarf
6. That friend or family member who went through chemo before was right: No matter how much you loved and supported her/him, you really DIDN'T understand.
7. (For the red devil ladies) There is no bartender sexy enough to make you drink a bright red beverage.
8. Things that you thought were scary before your dx, aren't so much anymore!
9. The only way out of the chemo valley is through the chemo valley.
10. Inside your imagination tattoo "This is temporary. Keep breathing." on the inside of your eyelids. Close your eyes when the going gets rough so you can re-read this message. Some days you will have your eyes closed more than others. That's okay.
11. Make a consistent practice of thanking people who are kind to you in ways both big and small. Look for these opportunities every day ~ they are there. Gratitude will make your heart happy.
12. If it is in your nature, live your cancer journey out loud. It will make it less scary for your sisters and friends who walk in your footprints someday. They will thank you.

My new additions:

#13  So, this is what it’s like to have a Brazilian?    

#14 Patience – Because treatments take many hours (a friend was completely shocked by this yesterday, she thought they only took an hour!), plus, there are many weeks of treatment, many weeks of fatigue….etc.

smethot

Bryona- that blows dead bears on the treatment length.  You started before me and i'll be done first???  Does anyone know why some of us do dose dense AC and 12 weekly taxols and some of us do dose dense AC and dose dense taxols x4?  MO preference?  Crap shoot?

Just a thought- maybe it isn't pubic hair that helps you pee straight but lip length???

I would freak if any of my treatments were delayed...i'm on a 100 day plan...and someone f***s with my plan, god help them.

Bellying up at 1pm today...bring on the hydration and yee ha to being 38% done chemo!!!  On a good note, weather is supposed to be +9 and sunny tomorrow...its like heaven.  xoxoxox

ywheels22

HI All Loved reading all your posts!

Bryona: unfortunately my bartender was just not that handsome or male for that matter!!!

Skigirl: I had a BMX with immediate reconstruction. I did not have enough fat anywhere so cadeaver skin was used. I had surgery before chemo. I am ++- and my BRAC tests all came back negative. I had two sentinal nodes involved that had a 4 mm tumor. Very small. Chemo is being done to make sure that if any little cell escaped it will be destroyed. Sometimes it's hard to go through this knowing there may not be one little cell at all in my body. But, what if there was? I was a candidate for a lumpectomy followed by radiation. I knew that would be the easier road, but I was not comfortable with the fact the reoccurance would be higher. And yes, they are just numbers. But for me, taking my breasts out and getting nice new ones to boot was the best option.

Mandy: ditto on what Bryona said. I have a 7 year old. He has asked questions that I have answered. So far so good. I hope it gets better for you. It sounds like you are doing everything right. Just keep talking and listening. It will be fine!

AC#3 was yesterday. Feel okay today but I have the dreaded Nuelasta shot at 2 this afternoon. That's what does me in. Here's hoping #3 is okay over the next few days....

Talk to ya'll soon!!!

MandyNJ

Well I'll put some TMI out there. I have my own theory about peeing straight and hair length. I think it has as much to do with how tight your pants are to squish up your lady bits. I never have hair, really can't stand it, and some times I pee straight and some times I don't! So the hair may protect you from getting squished. Haha!



So this irritation on my scalp - for which NOTHING has helped except air - forced the issue w my son. He saw how uncomfortable I was last night and said I can take off the scarf. He said he wasn't nervous or scared, but he looked like he was. So we talked awhile and then I asked him to peek under the cap and if he was ok, for him to take it off so he was in control. He did and he was ok. I asked what he thought. He said, well, you're bald alright. Haha. Only a couple times I saw his face change when he turned to say something and got a shock. But he quickly recovered and he said he was fine.



I'm so happy your seven year olds are handling it well. AJ is very newly six, so I'm guessing there's a lot of maturity in those months.



Shannon - good luck!!



Oliver- I laughed at my head too, and my husband said, take off, let me see this skullet. I said, no, you'll make fun of me. He said, yeah, probably, but that's what we do, we laugh at this stupid shit because that's what we do, as a team. And we do...he is the funniest man I've ever known. For most of my treatment hours, he's searching for stupid YouTube videos to make me laugh. The older people in the room have to think we're young and foolish to be laughing at a cancer center. I do know we make them uncomfortable by our age and being there.

Skigirl72

Mandy- your son is such a big boy! I am glad he is becoming comfortable with you head. He will get used to seeing you without anything on your head. It will take some time. I tell my son I am proud of him for handling all of these changes so well.

Good luck to all those hitting the bar today!

cancernoway

Rhonda - I think the #3 being so terrible is for AC peeps. I havent seen too many TCH people have a bad #3 so here weare keeping our fingers crossed. I'm sitting at the bar, bartender is female, nice and pretty but not what I was hoping for. Lol.



Mandy - lip size cracked me up. Glad your son is doing better.



Bryona - sorry for the length of your treatments. You are so strong.

LeeA

Gingit - re: neoadjuvant chemotherapy - 

A friend of mine who was also triple positive (er+, pr+, her2+) had a 10 cm tumor in 2006.  They started her with chemotherapy (AC followed up by Herceptin) and by the time it was time to do surgery all that was left was scar tissue from where the tumor had been.  They ended up doing a lumpectomy to clear out the scar tissue. 

LeeA

cancernoway, you're having six treatments, right? 

hope49

Here's a little something my dad sent me today...I think it's sweet and thought you might enjoy...the pictures didn't copy over, they are just of flowers.

Attitude........... 


There once was a woman who woke up
one morning, looked in the mirror,
and noticed she had only three hairs on her head. 
'Well,' she said, 'I think I'll braid my hair today.' 

So she did and she had a wonderful day. 



The next day she woke up, looked in the mirror
and saw that she had only two hairs on her head. 
'Hmm' she said, 'I think I'll part my
hair down the middle today.' 

So she did and she had a grand day. 



The next day she woke up, looked in the
mirror and noticed
that she had only one hair on her head. 
'Well,' she said, 'today I'm going
to wear my hair in a pony tail.' 

So she did, and she had a fun, fun day. 


The next day she woke up, looked in the mirror and 
noticed that there wasn't a single hair on her head. 

'Hooray!' she exclaimed,

'I don't have to fix my hair today!' 



Attitude is everything..............

LeeA

LOL!  That's great, hope49!

Anonymous

Oliverhog I'm so glad the sleeping is better. Here is to hoping this next tx has less SE's for you and doesn't affect the sleep thing again. 

Bry the MO said 4 to 6 weeks post chemo for radiation to start. I go in on week three to get tattooed, or at least marked fori it.

Paula you have to amend your #1 - Nose and "other" hairs keep you from dripping. LOL

Mandy I think you may be onto something with your theory.

Rhonda2

LeeA and Cancernoway,



I can say that my experience at the bar today was far better than #2 so I'm keeping my fingers crossed that I'll bounce back quicker too. So far, no shot for me. Onc said I'm doing really well with all my tests so only a one a day iron pill is needed. Thank goodness.

hope49

Rhonda, what dosage of iron are you taking?  My hemoglobin keeps creeping down each week and while my MO said that's fine, I took it upon myself to add a daily iron pill, too...just curious if it will help.  Glad your treatment went well today, I hope the caps are still working for you!

Rhonda2

Hope,



Onc said 325mg once a day should help. I'm still wearing the caps as I'm typing this. I get to take the last one off at 3:15. So far so good!



My DH took me to Cambria CA for a two day holiday and it was fabulous. He took me hiking at Salmon Creek which we climbed 2-1/2 miles one way and it was an increase of 1,300 feet. When we made it back to the car I was exhausted and my leg muscles still hurt.

Anonymous

Sheryl your tattoo image inspired me this morning. Well, I can't post my pics so I'll describe it to you. I wrote "This is temporary" on my left hand and "Keep breathing" on my right. My PS and MO both got a kick out of it. Although MO seemed to also get a little concerned that she needed to give me more meds . . . kept asking if I needed some Ativan during infustion. LOL

New pre-chemo rituals . . . steak dinner the night before, yoga and meditation in the morning, following by some awesome tunes and shaking my butt, and writing notes on my hands. Felt awesome coming to the bar, lets see if they can keep me feeling good.

Dea43

Hello, newbie to the forum. Stopped by here looking for info long ago, but never signed up. I was diagnosed with stage 4 IDC on December 18, 2012. I just gave birth to my 6th baby 5 days earlier.

So between new baby, Christmas, a battery of testing during spring break, this diagnosis... We were hoping for better in 2013!

So I started chemo on January 2nd. Aggressive cancer, no time to waste.

I started with Taxotere, carboplatin, Herceptin, every 3 weeks. I get Herceptin every week. I get Zometa every 4 weeks. After my first round some micro testing was done on my tissue and I was taken off the Taxotere, didn't know if that was good or not, but I know my side effects are less without that. That is pretty toxic crap. I was then put on Pertuzemad every 3 weeks.

I still get pretty nauseas with the carbo though.

I was loosing my hair, cut it twice, shaved it finally when it was hurting my head.

Felt much better.



Reading thru some of the issues here; kids, mine are ages 13 down to 2 mos. my older ones are in their own world. The next two ages 6 and 8 show compassion and try to help once in a while. My three year old asks if I am still sick and thinks my 'pokey' hair is awesome. My two month... Just doesn't get the best of me right now, but we will make up for that later.



I went on the roller coaster, mad, sad, okay, be positive, will I be here for my kids etc. everything I am sure you all did. Especially if you are advanced.

I take it day by day.



I just had round 4 chemo, so I am over half way there!



Anyone faced with the offer of an Aranesp shot for low hemoglobin? Blood transfusions? That was my latest question to battle.



Sorry for the novel, just thought I'd throw it all out there real quick.

SherylB

Hope49,

What a great attitude, made me laugh and at the same time had the thought about when life gives you lemons, make lemonade. Thanks for sharing it.

Sheryl

SherylB

skimommi,

Love the writing on your hands. How do you write on your dominant hand? I am trying to figure out how to write on my left with my right and can't even hold the sharpie with my right. May have to ask my DH for help but there is no telling what he would write if I let him loose. LOL.

Sheryl

SherylB

Dea43,

Welcome. You will find support, compassion, love, humor and so much more here. You sound incredibly strong with the birth of a new baby and 5 other kids and you are still marching along. My hat goes off to you. Stay close and tight here as much as you can.

Hugs, Sheryl