Starting chemo March 2013

Thought I'd post some things are helping me: 

Hydration - water is tasting nasty to me now (like metal and like a swimming pool) so I've staring filling a very large glass jar with water and letting it sit without a lid so any chlorine etc can evaporate but also steeping an herbal apple teabag in the water...makes for palatable water for me that I actually like.

Hydration and nutrition - even if I'm nauseous I can still drink a smoothie - banana, whey powder, almond milk and ice...and from there maybe some extras like frozen berries, ground flax, or whatever, but the basic smoothie recipe saw me through round one with lots of protein enough hydration.  By the way there is a REALLY good almond milk I've started drinking that some Whole Foods carry - I'll have to look up the name but it's in the fresh section and in a distinctive super tall white bottle.  Regular milk and soy are off the table for me...so thank goodness there is a nice alternative. 

Chemo fog - I've had tons of this even with just two treatments.  I have noticed that if I get myself outdoors for a walk, even a little one, it helps to lift the fog.  I think the circulation to the brain if nothing else.  

See a physical therapist recommended by your oncologist or surgeon.  I got this advice early on and this woman has helped me with SE and all sorts of things - we started with just getting better ergonomics for sleeping and wearing a compression bra to reduce edema from the surgeries.  She sees breast cancer patients in and out so knows the community resources, etc.

Question about PORT PAIN - on my second AC treatment it felt like the nurse stabbed a sword through my heart. I kept thinking it's not so bad, it's not so bad and then it WAS so bad...any advice about this?  I'm not sure a topical cream would help as it seems to be port pain below the skin level.  Maybe Tylenol beforehand?  

My port is more problematic in general, beyond the blood clot issue even - I get a rush of pain in the area whenever I get hot flashes, which are merifully less frequent lately.  And I agree with the earlier post about the irritation that comes from the adhesive.  I thought mine was infected so they put me on antibiotics but really when I ripped off the adhesive it got a lot better so who knows.  The incisions are finally looking small and OK to me, but I wish they wouldn't make the port of purple material as it shows through and looks kinda bruised all the time.  My plastic surgeon offered to take the port out when the time comes and I may take him up on that, seems like a good idea I wouldn't have thought of.

Beth

Beth...OMG...how the heck did they give you the wrong drugs?? At least two nurses...sometimes three...check my name...medical record number...and we all read and agree to the drugs listed on the drip bags BEFORE they even hook them up...and I initial forms! I am soooo sorry that happened! I'm not one that ever thinks about suing...BUT sure sounds like a case to me...like you need that extra stress in your life right now...but jeez!!! Hope your new MO/treatment center take better care of you!! I'm betting some of the nasty unexpected SE's were from wrong drugs!! Do you have someone going to treatments and doc appts who can help double check what you're supposed to be getting!! Sending you a big HUG...stay strong!!



Rachel-apparently MDA where I get my treatments has done a study on Neulasta and feel confident about giving it same day. Lots less hassle for me as I don!t have to go back the next day for one little shot...also don't have another charge for additional appointment. Had big time sternum pain last time but this time I'm not being a martyr and am taking pain pills on time!! No problems so far...knock on wood!



Hang in there everyone!!

Pity party of one over here. I have been able to be positive and doing well until this week. Had my second AC Monday. Wednesday my hair massively fell out. I thought it would be no big deal. I already shaved my head. I cried my eyes out in the shower. I can't look myself in the mirror. Now I look as bad as I feel. I can't stand it. Tx kicked my butt. I am more tired than last time. Today I thought I was going to faint when I got out of the shower and had to sit down. I would love to go out and enjoy this beautiful day. The pollen cunt is off the charts and just makes me feel worse. Now I have a nasty cough from the pollen. Tring to shake it off just need to feel a little better.

jbdayton Wouldn't your wbc be high from the Neulasta shot. Mine were elevated also. my surgery is also after chemo.

Welcome Beth....sorry you had so many issues. Good luck with your new doc.!

Sandersmomma-You are certainly entitled to pity parties!This sucks! It seems like it will never end....but it will & you'll look back & think it went quickly (it's strange). I cried when I lost my hair (both times) & I still cry as it's still coming out. Try to just breathe. Hopefully you can get out & just sit in the warm sun (maybe a mask to help keep out pollen). It makes me feel so much better. I hope you feel better soon!



For the ladies having surgery after chemo- I had the same & was so excited to feel my tumor shrink (a good motivator that those who have surgery first do not have the benefit of). My tumor shrunk from 5cm to 2cm, and my MO was expecting complete remission. I hate to say this, but I still had active disease at the time of my surgery. After 3 months of TCH therapy, I was told I needed AC therapy. I was devastated. I hope none of you have this happen to you....but wanted to share that this is a possibility. I hadn't seen where anyone else had to do this (although I'm sure there are others). I don't want to bring anyone down....but I don't want anyone to be blind-sided like me. ~Andrea

Susan... Welcome. Sorry u r here, but its a good place to be if u have to be somewhere.



I had the same pain in my shooder that was a burning pain EVERY SINGLE TIME I took the neulasta shot. I had similar thoughts, it eventually conceded that it was from the neulasta shot, and it was. I had to switch off the neulasta because of some neurological issues that something was causing me and they never figured it out, aside from waiting till all tx from that regimen was done.



Rest in the fact that you're half way through the AC, which is the worst... U can and will get through it. Ay txs after that?



You will do it girl!



The AC is the worst and u already got through two of them.... Keep on fighting it.

Tell yourself it is the neulasta....

The power of our own minds is pretty strong.



Hugs and peace,

C

Hey March 2013 group,

I'm from the January 2013 group.  I haven't read through all your posts, but I did see a few that mentioned tips on how to stay hydrated.  I ended up having to get IV fluids three times during the chemo.  Once I ended up in the ER 12 days after my first TC treatmentbecause I thought I had a fever.  My heart rate was pretty rapid, they figured out I was dehydrated and gave me a liter of fluids.  I felt so much better.  The next time, I had a consut with the RO two weeks after treatment number 3.  My blood pressure was like 87 over 54.  She gave me half a liter.  And the final one was with my last treatment.  I discovered this little trick after I could have used it myself.  Even though water might taste nasty or you don't like it, it's pretty important to drink it anyway.  I have bottles that are almost 17 ounces.  

I found that if I take a sip and swallow and count slowly to five, then take another sip, swallow and count to five and do this until the bottle is empty, I can drink a whole bottle of water in less than three minutes.  The counting while you're sipping seems to take the focus off the water and puts it more onto the task or action instead.  Do this four times a day and you've consumed more than 64 ounces of water in a mere twelve minutes.

Also, one of the Bellas from my January group was very concerned about us all getting enough protein to help heal our bodies from the damage chemo does to so many healthy cells.  It helps with the recovery.  I believe the recommendation is 100 grams of protein per day.  Not easy to do if you're feeling a bit sick to your stomach or too tired.  Leia always mentioned Fage yogurt.  She managed to find some that had like 23 or grams of protein.  I found Fage yogurt with 10 grams.  This yogurt is absolutely delicious.  It's like no other yogurt I've ever tasted.  Nature Valley sells some really delicious peanut butter dark chocolate protein bars with 10 grams of protein and Costco sells vanilla and chocolate protein drinks that are like 160 calories, but have 30 grams of protein in each 11 ounce container.  Drink one or two of those a day and they count towards your fluid and your protein intake requirements.  I think the Costco version is called premier protein. 

Best of luck to you all on your journey through the chemo valley.  Take care of yourselves, stay healthy and it's O.K. to cry.

On my way to my third infusion. 

Praying for few side effects.  I am better prepared each round. 

Hope all others having tx this week have few, if any, side effects. 

Drink lots of water and flush the poison out quickly.

God be with each and everyone of you.

Jeannine

Janscores....Honey I know exactly how you feel. Im so tired of hearing others say "your so strong and brave" yea, you ought to see what goes on behind closed doors ! Bwahhhhh! I have my fourth and final treatment on May 10, a few days before my 60th birthday. Sure wasnt planing on spending it in the throws of chemo side effects. I find that I have a really down few days right before my next treatment. I am also on antidepressants and have been for some time. Often when you first go on them you feel kinda "hazy". I switched to Effexor 150mg ER and seem to not have so many hazy foggy days from them. There are hundreds of AD talk to your doc and see if maybe a change might be in order.

I take care of my grandchildren ( 6 months and two years)daily except for the week after  my treatment. I am pretty much wiped out that week, nausea, aches, headache, diarreah and that blasted fatigue. I have no idea how some women work through their treatments, I sure cant. Even on my good weeks my hubs has to help me with the kids when I have always managed on my own. Just ticks me off to no end. So my advice is try to keep to a routine, get up and get dressed, put on a little makeup, try to have some outside time if its just sitting. Knowing that your not alone in your feelings may help. The only thing that keeps me going at all is knowing that is going to get better and be over soon.

Im no authority but feel free to provate msg me if you need to talk.

Angie

JanScores... I have to agreewithwhat was already written..andsucksthat any ofushaveto be here,but since we're,welcome to the family... Just got on hereabout threeweeksago... And it waste best thing I did. I am also single andliveby myself,although I have anatomist nine yr old who had to go live withher other parent until I have the energy to take care of her myself.... It's been a tough road.

MOST women do not work full time during AC especially. My AC kicked my butt and caused many complications that put me back inthehospital and only caused meto get weaker. I have had many its parties and I think Tx number three was the worst of my ACs. All were hard,but that was the worst.

YOU WILL GET THROUGH IT!!!!!! And moving on to tax.,after this will seem like a little walk in the park for MOST people compared to AC txs.

Pity parties are necessary for most people... U can't keep the poker face up all the time,and seems like many people expect or need US to comfort them and it ends up with us trying to make them feel better about what we are going through!

We cantchangethem, so.... Let the tears fall when they need to and just remind yourself you are more than half way through.



During my weekly taxols, I count down,and I cant even recall feeling the count down during theAC.... I only remember that every day was a struggle... YOU keep on hanging in there... U will make it. U only haveone AC left and u cando it!!!!!



Hang in here,and keep on checking in here... We are all here for each other.

Sleep, rest heal.



Peace to you,

Colleen

Janscores - I think we can all relate to how you feel.  The emotional battle can be the worst. I don't have a lot of additional suggestions but on my bad days I decide what it is that I need to get out of the funk.  Sometimes strength, perseverance, determination, or hope for example and then I spend time researching the Internet for the perfect quote that fits what I need.  It helps me get back into a more positive mind frame.  I post my quote on my facebook page.  It's funny but my grown children have quickly learned that when they see me posting quotes I am feeling down and they are soon at my door taking me somewhere like the park with grandbabies or for a shake or ice cream cone.  It has worked for me.  I just completed my final AC tx today.  I am now moving on to taxol.  I am half way done.  This board has been very good for me so stick with us.  Good luck. 

Janscores, I am on 6 rounds of TAC @ 21-day intervals and just had my 3rd infusion yesterday.  I understand each one is just a little harder to get motivated to go to.  Just remember we are fighting a disease.  I read a comment a while back that I think about as each treatment approaches, they said to think of the chemo as PacMan chomping away at the tumor.  I loved the visual. 

Are you taking all 3 drugs at the same time?  Each treatment I try to see if I can do something different to minimize the next round of side effects.  This has become a goal of each round giving me something to aim for.  I am competitive at heart and this has helped me. 

Friends and family are great but they can be a drain as we always try to project our positive feelings to help minimize their worries.  I think that comes from being a woman.  Come talk to us and let out your dark thoughts so you can cleanse your mind and get back to handling reality.  It can be quite a challenge at times. 

Turn your worse fears over to Jesus and let him carry you. 

Giving you hugs for your treatment tomorrow.  Remember you have been climbing up the hill and now you get to climb down slowly but surely.

Jeannine

elmrush~

"God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it."

~ I love that and will be thinking about that during treatment #2 tomorrow

Oh!  I forgot to mention "normal"!!!  Have any of you every appreciated feeling NORMAL as much as you do now??  Isn't it crazy??  Just to be able to go to the grocery store when you need something or change the sheets on the bed without having to take a break.  I never knew that feeling normal is such a beautiful thing.

Even on my good days, I only have about half my tastebuds working.  So I kind of feel like I can't even find comfort in food like I normally do. 

Unfortunately, after this last round, I suffered with major allergies and a cough that made me wet my pants and have a splitting headache (just being real). So I feel like I got jipped ~ kind of skipped over NORMAL this past round. 

Maybe that's why I was having such a tough time with going in for round 4.  Anyway, the anxiety about it has been awful.  But I have done it and like I said, I am just settling in for a crappy weekend that will hopefully be better by Tuesday.  The home health nurse is coming by for hydration for the next three days.  It seems to take the edge off and I havent passed out since I have been getting the hydration.  But it won't make it all go away . . .  still looking for that magic trick.