January 2013 chemo group

LeeA

Oliverhog,

I'm sorry you're feeling so wiped out.  :-(

I made myself eat small meals/snacks every few hours (except during the middle of the night).  I wasn't really hungry but I found that if I ate something I felt better.  It's very strange because if I had wanted to go into an almost dieting-type mode I could have easily done it but something in my pysche said "eat something."  Of course, I have no idea what will happen with treatment 3.    

For comparison purposes - I had my second treatment on a Wednesday, Neulasta on Thursday, felt like I had been dropped from a building on Friday/Saturday/Sunday, felt a little bit better on Monday and by Tuesday - I felt like myself again.  By Wednesday I felt good enough to go out to lunch with a friend after my follow-up appointment.  Again, who knows what the third will bring.  I've read that it can be a doozy.

Oliverhog

Thanks, LeeA.  I'm hoping that the half-dose on the Neulasta will leave me feeling better than the first treatment did.  I still sometimes can't believe this.  I can't believe that I'm facing chemo and radiation AGAIN.  Once in a lifetime is more than enough.  I'm not a spring chicken anymore and this damn lung disease - I'm really worried about the impact the chemo will have on my ability to function for months and months down the road as well as the impact the lung disease will have on my ability to complete the chemo.  You're a doll.  

Anonymous

Oliverhog~I buzzed my hair the night before AC 3. That was on dec. 27. I still have all my stubble and I get AC 4 this Friday. My tx was every 3 weeks. It isn't growing, but it isn't leaving either.



Blessings

Paula

Amrdbit

Shannon, 

I too am an incredible planner. I want all questions answered and I like to leave little to the unknown. (But crazy as it sounds, I have no problem jumping in my car and with little more then my GPS in my car driving from Dallas to Boston without any planning. I'm all up for an adventure at any point..... but normal daily life.... an abundance of planning. LOL)

Anyway, Have the healthy snacks on hand for after chemo, but don't stress too much about it. (I know, easier said then done, right?) Some people feel like eating, some don't. Some people loose their taste buds for a few days, others don't. Sometimes favorite foods sounds good, sometimes they don't. This is one of those things that you can't really plan for, b/c each persopn is different, each treatment can effect you differently, and sometimes each day is different then the last.... which could be diferent then tomorrow. Try to just go with it. Eat when you can, try different foods and just do what your body feels like. It's really not as bad as it seems. Deb

Bryona

Hello, darlings!

Mandy, I'm SO glad to hear everything went well today. Good heavens, you certainly deserved for it to!

And Shannon, I think Mandy is right about only being able to do so much to prepare. Until I went through the SEs of first tx myself, I just didn't really understand what people meant about how they felt. It's okay, though. You'll get through it, because you're strong and brave and determined, and because there's nothing else to do. Just take it one day at a time. (And if I can find a picture of Cyclops jubblies, I promise I'll hook you up.)

Oliverhog, I'm losing my hair like crazy post-buzz, and today is day 20 since first tx and day 5 since second tx. It has definitely accelerated in the past few days; I don't know if that's because it's time or because of the second tx. Hmmm...

I'm still fighting this damned cold thing, which has now triggered a loverly bout of asthma. Ah, well. This whole breathing thing is overrated, I guess. Anyway, I'm headed for the doctor tomorrow because the fever won't go away and the chest congestion is getting worse. I had flu and pneumonia shots in December, but I'm wondering if it might be time for some antibiotics. Or a punch in the face to distract me. That might be good, too.

Today, I'm resenting the hell out of what all of this is doing to my poor DH. Today is his birthday, and I haven't been able to do a single damned thing for him. He's getting no special birthday dinner, or trip out to our favorite coffee shop, or cake, or anything. I couldn't even sleep with him last night; I've been on the sofa for days so that I can breathe and so that my coughing won't keep him up all night. Seriously? Poor guy. I usually spoil him for his birthday (he's a giant five-year-old, so it's loads of fun!), but instead this year he gets this. It just makes me angry. It's bad enough that I have to go through all this cancer crap; it just doesn't seem fair that everyone else who cares about me does, too. Know what I mean?

Okay, I'm done griping now. Here's a picture of my favorite t-shirt to cheer myself up -- and anyone else who needs it:

Nice, huh?

Bryona

shawkins and fighter, I hope everything goes well in the next few days, and that you both have minimal SEs and plenty of tastebuds.

teacherjulie, I'm sorry you're feeling so unwell, but I'm glad you've stayed home. I love kindergarteners, but they are adorable little germ factories, aren't they? I hope you're feeling better tomorrow.

Lee, how awful! As if cancer isn't bad enough when we're awake, it has to come bother you when you're asleep, too. That's just so many different kinds of wrong.

Deb, I love a salad in the morning, along with a bunch of other non-break fast-type foods. I haven't wanted them since chemo started, though, so I'm completely envious of you right now!

cancernoway

OliverHog - I hope you are feeling better.  I think of you often and hope that everything goes well for you.  I would be wearing my MO out with questions, concerns and anything that came to mind.  They may be able to shed some light and be able to offer some assistance.  You can do this and we are here with you.

Mandy - Congrats on your port!!!!!  You will great with chemo, you have endured more than anyone should have too and you are amazing.  Thank you for the inspiration. 

Smethot -  Congrats on your PICC!  I take a bottle of Powerade, some peanut butter crackers and some cheese crackers and some M&M's, a blanket, my tablet and my Crackberry.  The Infusion Center I go to is in the hospital I work at and they will bring a sandwich if I want it.  The day of infusion, for me, my appetite didn't change.  That didn't happen for a couple of days.  We aren't on the same drugs, so it may be different.  Good luck to you!!!

LeeA - I did the same thing, made myself eat small meals, more often.  I didn't feel like eating since nothing had any taste and my tongue hurt.  No sores, it just hurt.  Anything spicy, tasted like salt, anything salty tasted like fire.  I couldn't use mustard, ketcup or anything like that because it burned.  That only lasted a week and since I'm every 3 weeks, I figure if I can 2 good weeks out of the 3, I'm good.  I did have a day where I couldn't eat anything.  I tried breakfast and threw it up so that was a drink only day, but the next day was better and the following day I could eat solids and the day after that I went back to work.  My chemo is on Thursdays so I took Thurs - Tuesday to recover.  Going back to work, for me, was one of the biggest helps.  Getting out and getting back to my normal routine helped me feel better.  This week I feel completely normal.  My next treatment is next Thursday so we will see if it all follows suit.  Fortunately, my STD and FMLA are both intermittent so if it doesn't I can adjust. 

I agree with the people needing to have a sense of humor.  Good grief laugh a little.  Funny story, they have these little bells at the infusion center so if you need something, you ring the bell.  Well, again, this is the hospital I work at and I manage the staffing office which is right around the corner from the infusion center.  For some reason, one of my girls has a bell on her desk, no clue why, but she does.  So they come over to visit and we are talking and she notices the bell.  I think nothing of it until after they leave and I hear a bell ring.  All of the nurses in the infusion center are trying to find out who is ringing their bell and everyone is answering "not me".  About 5 minutes later, the bell again and more "not me's".  I get a text message at this point and well my pal, Kelley is in the staffing office ringing the bell.  The other partner in crime is watching to see when all the nurses sit back down at the desk and gives her the cue to ring the bell.  It was hilarious.  They are excited for my next treatment so than can harrass the infusion girls again.  I wonder how long it wall take them to figure out it only happens with I'm there.

I hope everyone is doing good and everyones SE's are manageable.  I hope everyone fighting a cold starts to feel better.  Again, I thank you all for being here.

cancernoway

Bryona - Happy Birthday to your wonderful husband.  You can make it up to him and he sounds like a champ!!!

cancernoway

Bryona - and I love that t-shirt.  Cracked me up!

hope49

Bryona, you're amazing...asthmatic and all, you can still cheer us up. Rest easy and get better!! (((hugs to you))).

Nicole503

Bryona ~ I hope that the doctors are able to hook you up with some antibiotics to send the chest cold packing!

I'm sorry about the timing of your DH's birthday. I can sympathize. Mine was 4 days after BMX and I was in no better condition to celebrate.  My husband told me what he wanted for his birthday was for me to be comfortable in the short run and to beat cancer in the long run. I can well imagine your husband wants something similar and you should take some heart in knowing you are giving your breast cancer fight 100%.  There will be many more birthdays to celebrate in the future.

Wishing you some ease for sleeping tonight.  Hard to do with asthma, I know!

Anonymous

Oliverhog I still have a lot of fuzz on my head too. I am a week and a half past tx #2. Since my hair started falling out at day 14 following my first treatment, I'm wondering if the rest will follow suite on day 14 after #2. That will be this Friday. I know the lung disease makes it that much more difficult for you, but try to walk, even if it is a little bit. My first onc was so adamant that the walking/movement would turn around the fatigue.

Yesterday I started breaking out on the back of my head. I have red spots and a little itchy. WTH is that all about? DH thinks it is because of wearing a head cover all the time and says I need to let my head "breath". Okay, I really don't think the back of my head can breath, but whatever. Anyone else get these red bumps? I recalled reading in the pre-chemo days someone saying to use Head ^ Shoulders for this kind of thing, so I bought some today. Hope it helps.

Mandy, that is so great that your port placement went smooth today, just sorry you had to take the rough road to get to this point. But it takes some really rough tread to reach some of the most beautiful places.

Byrona, that totally sucks that you are still fighting this thing. Hope you get to feeling better, and soon! It has been too long already. Please be sure to sanitize before your next post . . . I don't want to catch the computer virus. LOL

LeeA

Skimommi -  I really like this: "it takes some really rough tread to reach some of the most beautiful places" 

Do you keep something on your head when you go to bed at night?  

I've been wearing a ski cap I got at the 99 Cent store (but not to bed).  For some reason I really like it.  It's black, gray and white (stripes).  It keeps my head warm but not hot and it's not too tight. 

Bryona, I love the t-shirt graphic!  Sorry this cold of yours has persisted and has moved into asthma!  :-(

Also, belated happy birthday to your husband (unless you're still online - in which case it's still his birthday for an hour and a half).  I understand how you feel but I'm sure his greatest wish is for you to conserve your energy and get better!  Chemo is a tough enough row to hoe on its own without having the cold/asthma thing on top of it all!

cancernoway, my tongue is strange as well.  I don't think I have sores but it just feels very sensitive and it looks very red.  Oh, and I have little slits at the corners of my mouth.  What joy!  I looked up little slits / corners of the mouth and apparently there's a name for it:  angular cheilitis.  Oh well.  It could be worse.  I've been dabbing a little bit antibiotic on the little slits so hopefully these cracks will start to mend.  

I chuckled out loud at the bell ringing story and now I'm remembering the first joke my husband ever told me (it involved bells).   

Oliverhog, I feel so bad that you're dealing with more than just breast cancer ("just breast cancer" is kind of a strange thing to type).  I think I'm an older spring chicken than you are so I can relate to that little part of it (grappling with getting older, etc.).  I agree with what Skimommi said regarding walking.  I had to miss four days after the last treatment but when I go walking I feel so much better.  I guess it's the endorphins or something but of course, you know all this all too well because you were a competitive runner (if I recall correctly).  

I'm sure you've read what I've posted regarding the 100 grams of protein per day.  I read about that on the triple positive thread a while back.  Here's something I just found on Livestrong.com

Protein Requirements

When a cancer patient undergoes chemotherapy and/or radiation, his body enters a hypermetabolic state (increased rate of metabolism). Observed muscle and tissue wasting could be demonstrative of a diet low in protein and calorie intake. Protein is essential for rebuilding normal tissues, which are affected by chemotherapy. According to WebMD, protein is also needed for the overall repair and maintenance of the immune system. For these reasons, cancer patients are advised to increase their protein intake to 1.2-1.6 grams per kilogram of body weight. This means that a 165-pound (74 kilograms) male cancer patient should be consuming from 90 to 120 grams of protein per day.

 Read more: http://www.livestrong.com/article/269872-nutritional-diet-for-cancer-patients/#ixzz2K0M3vakj

Mandy, Glad to hear it all went well today!

Colleenkelly

I am so tired but I can't sleep. Need to call MO today. Ugh!!! Can't eat hardly and now this. WTF????

Colleenkelly

Congrats Many on the success of your port. I am so happy for you that things went well this time. You have very young children. I hope your Side effects will be minimal so that you can continue to take care of them yourself. Good luck sweetie. Bryona, good luck with the doctor. I hope they can get you fixed up. I wish I were half as brave as you. Thank you for all of your inspiration through this.

smethot

Manda...we shall be chemo twins...picc & port...same AC-T and schedule...great thing is, we'll be FINISHED before the end of May...i'm hoping for a brushcut of hair by my b-day at the end of July...weeeeeeee!!!

Bryona- sure hope your docs give you some wonder drugs...ask for the REALLY good ones they give celebrities...you're a star and baby, you deserve them!

Lee my protein guru...i am now looking at the protein in EVERYTHING trying to add up enough to stay healthy on chemo...thanks!!!

And additional thanks to everyone who chimed in on what to pack and SE's...another question...what Claratin do i need to take before my Nuelasta shot, pls?  Onco nurse told me yesterday that they'll give me my Neulasta shot the day after chemo and i want to be prepared.  MO hadn't heard of the Claratin thing (said he'd look it up) but also said go ahead if you like- its not contraindicated.  I have nasty old allergies to begin with so hey, if it may help...but i need to know WHAT Claratin, pls?  Thanks!  xoxox Shannon 

martha323

Good Morning, everyone - I welcome advice this morning! First round of 4 dose dense AC on January 31st and guess what ...!! 3 liters of water a day, prunes, dried pears, lots of greens, 2 ducolax pills at night, and walking almost every day don't seem to be helping the side effects of the pre-infusion infusions and Zofran. I'm not in pain, but getting concerned and uncomfortable. And feeling full. It's time for Miralax - at night? Other suggestions?

Also, I've been very fortunate that I haven't had nausea, when can I start tapering off the Zofran? And does anyone recommend taking compazine rather than Zofran at this point if I have break-through?

I've been reading the posts here for a while - you are an amazing group! Thank you for your help so far - I've found so many helpful and reassuring posts here ..

MandyNJ

Shannon - absolutely! I didn't count the weeks to the finish line once it started getting delayed. It's good to know it'll be by May.



My hair normally grows like a weed so I'm curious how it'll grow back. My sister in law is praying that it comes back curly and red (it's her way of dealing). I've always been one of those people who liked her hair as it was so I'd like it to grow back as it is. My surgeons office said my type of hair is usually the type that doesn't change. Well see. Im not worried..it is what it is.



Skimommi - wow...I love that saying. It really hit home for me and I'm thankful you said it. Dude, I may put it on a tshirt. I'll put skimommi under the quote



Bryona - I'm worried about ya! Is the doctor today? I hope you get relief. Are you using a humidifier or anything?



All- I feel really great. Was woozy through the night from the after effects of the loopy drugs. I'm quite sore. It's kind of pulling, but I wonder if that's more bandage than port. my doctor said he is extra neurotic about infection and I'm completely bandaged up and must stay so for 5 days. No showers. Whatevs..Ill wash my hair in the sink and sit in the tub. Least of my concerns!



With regard to my kids, my daughter is too young to know much of anything, though she was pretty clingy after this latest hospital stint. My son, on the other hand, has been having some trouble. He won't directly say anything, but no one is being 100% honest with him either. He held it in the entire weekend and then at bedtime on the night I came home, he was just sobbing that I was there in the morning and not at night. That I left him. What can I possibly say? You all know I can't promise to be there. Saying things like I'll always be with you and I'll always love you seems to make him more ill at ease. Now, he's going to the school nurse every day with a stomach ache. I think he's terrified I won't be there after school. But he won't say it. So today I'm calling the counselor at the cancer center who deals with children of parents with cancer. She talks to them through playing and may help me use the right words.



Thanks for letting me ramble on about that. You may have some wise words for me.

SherylB

Holy crap,

I haven't even felt well enough to get on these boards and they are my lifeline. Tx #2 last Thursday kicked my but. Had the headache/neck ache from hell and couldn't even sit up for more than a few minutes. Weird h/a usually hurt more laying down but not mine. Neck and shoulders felt to weak to even hold me upright. Spent many minutes/hours in the bathtub with my head in the warm water. Thank goodness we got a big tub when we bought our home. Tastebuds are all messed up only thing that tastes good is Hawaiian Punch and Fudgsicles. Weird meals. Forcing a few bites in but was in pretty decent nutritional state before this started but gotta get the protein in. Gonna try Lee's Fage Yogurt with juice. I love Fage yogurt so that should go down. I have actually been sitting up for 3.5 hours this am so making progress.

Missed you all while so out of it.

Hugs, Sheryl

SherylB

Shannon,

Generic claritin is fine (loratidine), don't get the one with D. You don't need the decongestant. I am really surprised the MO hasn't heard of it. Pretty big research study. Start day before Neulasta and take for 5 days post Neulasta is what my MO recommends. Like you said it won't hurt and may  help allergies. Good luck girl. Chew ice the entire time of chemo and be sure and do the baking soda/salt/water rinse about 4-6 times per day. Knock wood I have been fortunate on issues with my mouth. Taste buds shot but other than that ok. Start rinse before chemo starts per onc. nurse >30 years.

Hang tough,

Sheryl

SherylB

rilori,

taper the anti-nausea meds when you feel you are ready, if you get queasy then take one. Personally I prefer compazine to the zofran. Not really sure why but have had so many headaches with chemo (rarely had h/a before cancer) and there is some evidence that zofran can contribute to h/a so that is probably why I stay away. Plus tastes yucky.

Hugs, Sheryl

martha323

Many thanks, Sheryl - I'll see what happens today w/o Zofran! I hope that you  find relief from your headaches soon -

I hope that today brings comfort and peace to everyone.

Bryona

Mandy, my heart breaks for your little boy. It's difficult enough for adults to deal with all of this, but for a child who's just old enough to be afraid and not old enough to fully understand... well, of course he's struggling. I think the therapist is a great idea, both for helping him to understand better and for helping you to find the right words. You'll find a way through this, for both of you. (((hugs))) to you both.

rilori, I've also been lucky to not have nausea. I think I'm different from a lot of the other ladies here, though, because my MO didn't have me on a schedule for anti-nausea meds; she just told me to take them as needed. My first tx, I was so paranoid about nausea that I took them several times, then finally realized I was feeling constipated, not nauseated (shows how well I know my own body!). I haven't taken any anti-nausea meds since (other than the ones in my IV, obviously). So, I'd say if you're not feeling nausea, try not taking the meds and see what happens. It'll help you get through the constipation faster, too. As for Miralax, I'm a BIG fan these days! I took it in the morning days 4 and 5 for first tx (wishing I'd taken it sooner!) and was able to poop on day 5 (no TMI here!). For this round, I started taking it the morning after tx and used it for 3 days, and I never had a problem.

Sheryl, wow that headache/neck ache sounds awful. I'm so sorry you're having to deal with that, but I'm glad to hear you're starting to feel a bit better. You hang tough there, sweetheart. You'll get through this.

klaudiak

Skimmomi - I have something like that, but I am at home most of the time "naked". I put some moisturizing lotion on it and its better now. 

Nicole503

rilori ~ You might want to call your MO's office for suggestions if you've been plugged since 1/31.  It sounds like you are doing everything right.  Good for you for walking!

I had a tough time with constipation after AC #1 and while I've been better at managing it in rounds 2 & 3, my hiney is a super unhappy place since chemo has effectively delayed my body's ability to heal from the insults in round 1.  I do docusate (stool softener) a.m. & p.m. starting on chemo infusion day and continuing for 5 days plus 1 tab of Sennakot in the p.m.  That combo plus walking has seen me through.

I think part of my challenge is that I was a regular coffee drinker pre-chemo and pretty much stopped with chemo because it tastes so wretched.  (My switch to herbal tea is a chemo concession I still feel grumpy about sometimes).  Coffee definitely helped me stay regular and I think it's absence has been part of the problem.  Were you a big coffee drinker, and are you still able to drink it?

Good luck!  I hope you are able to resolve your current consitpation without the insult of hemorrhoids.  It is not fun to do subsequent rounds of chemo (especially if you get GI side effects) with them.

Wishing you the best.

martha323

MandyNJ - I've been thinking about your post this morning about your son's reactions. Does he like to draw or paint? The reason that I ask is that when I was going through a very difficult divorce, my daughter felt so sad, looked so sad, had terrible stomach aches, and couldn't say specifically what she was sad about or afraid of. She loved to draw and one evening at dinner at a pizza restaurant she quietly drew a picture on the placemat that told me how deeply she felt her father's absence and how confused she felt. She was nine. I don't know how old your son is, but maybe if he could sit down from time to time (while you're busy with your daughter, or on the phone,etc.) with colorful paint, big pieces of paper, and crayons, whatever he wants - he might be able to make a drawing or painting about something that he could tell you a story about. Maybe he won't want to tell you the story and that's ok, too.

The counselor sounds like a great idea. No guidebook for our unique journeys, unfortunately. It's been all trial and error and stumbling for me to find ways to cope, but there sure is amazing support here, for sure. I'm not wise, by any means - but thought I'd share the experience I had with my daughter ...

Hugs, Martha aka rilori

martha323

rilori transformed to Martha323! I ask myself why I decided to use an old user name - I have no idea! If I've lost count of the number of doctors, techs, interns, medical students, residents, etc. (yes, I actually kept a list of names for a few weeks!) who have examined me upside and down over the last three months, why am I trying to remain incognito? Hiding? Martha, get real! OK!

Bryona and Nicole - thank you so much for the tips. Prayers for everyone today ...

SherylB

Martha,

Glad u cleared that Up. I thought I was just foggy and responded to the wrong person. I personally love that you are embracing the name Martha, that was my mother's name, although she was always Martie to everyone. But Martha Jane will always be my lovely mother.

Sheryl

Fighter69

Hi Ladies , 

Yesterday was dose 1 of chemo and I did feel a lot of gas in my chest and some queezyness . Doc wants me to come in today for a shot that he says will make me feel better but I am not simply up to it which should be understandable . I asked to come in the am instead hopefully I will be able to. Did not sleep that well but I did rest a bit just a headache and some constipation . Also it does not help that I still have my stapples in from the port which will be removed on Sat thank GOD . 

Did go for a 4 block walk it helped a lot my taste buds have not changed I ate popeyes chicken this am but wont over do it . For those that cant sleep there is a herbal tea called Sleepy Time that is wonderful and then there is Ginger that has ant-cancer fighting properties that knocks me out when I put a tea-spoon of it in my tea. Coffee does not taste the same to me so I got some decafinated green tea with lemon which is just as good . Will shave my head soon dont want the suprise of falling hair but other than that I feel great . I read the post about chemo and headaches that was a question that I had but I thought maybe my pressure was up or something . Glad to know it is not the pressure . 

I am also glad that everyone is doing well despit the SE "s but hang in there you are more stronger than you know . 

Fighter 

LeeA

Colleenkelly, you are brave as well!  Never forget that!  I just looked at your signature again.  You've been through a double mastectomy (12/28/12) and on 1/28/13 you started your chemo regimen - just four weeks or so later.  And not just that, you started chemo after barely finishing up with a stomach bug!  

I suffer from anxiety issues as well and I use a lot of mind games to get myself through all this (I have a laundry list full of them).

My husband told me to tell my psychiatrist (who I've seen just once through all this - and it was a really weird visit, I might add) that I am doing far better than he would have ever imagined.  My mother told me one day that I was tough and I was like, "who, me???"  And one of my best friends for years who lives several states away said "you have always been so strong."  Another big WTH on that one because I've never seen myself that way.

That's why your post resonated with me this morning and why I wanted to comment - especially after I reread your signature. 

In the words of Christopher Robin to Pooh:  "You're braver than you believe, and stronger than you seem..."  

I hope you can at least find a way to eat something - even if it's just a small bowl full of anything - every few hours.  I think that's the only way I got my strength back after rounds one and two.  Of course, who knows what will happen with round three but that's what worked (for me) the first two times.  Drinking fluids is equally important.  

Every time I think "ugh, I don't think I can eat anything" I think of just one word: cachexia.  It seems to be associated with advanced cancer but I just read this: 

Cachexia is a multifactorial syndrome that can develop as a result of local effects of the tumor, host responses to the tumor and anti-cancer therapies. link: http://tiny.cc/xpn1rw

I watched my husband lose sixty pounds when he went through his battle with a rare autoimmune disease.  At one point they discussed a feeding tube (I think that's what finally made him realize he needed to try to get food down).