April/May 2012 Chemo hang out

Hello Ladies,  I am posting on your thread as a kind of pay it forward.  Today is my 3 year cancerversary.  I am TN with 3 positive nodes.  I am currently NED and plan to stay that way for many years to come.  I wanted to give you encouragement and hope.  Life can go on beyond surgery, chemo and rads.  You will feel good again.  BC will NOT be the only thing that consumes your time and  thoughts.  When I was going through chemo, a lady came on to our chemo thread. She was a few years out from DX and it made me feel good to read her post to us gals that were smack dab in the middle of TX.

So I am sending you all a group HUG.  Hang in there.  Better days are around the corner.

Navymom

rgina, I am SO glad you are doing so well!!!!  I hope it continues to be this way for you (and both of us!) for the rest of our treatments!   I drink mega amounts of water, too, and I agree it is critical to washing the chemo out of your system ASAP - especially for the carboplatin, b/c it is excreted by your kidneys.  My onc said I needed to wash it out of my system ASAP!!!    Unfortunately, it didn't make a lick of difference for me in terms of side effects on my first two rounds.  I drank just as much water then (I chart it - at least 100 oz a day) as I did on this 3rd round.  In fact, I may have drank MORE on my first two rounds!    So who knows.   Just happy to be doing better this round!  

 The thrush first started for me on day 6 after TCH1.  Your immune system is typically at its lowest ("nadir" is the term) days 7 to 10 for the TCH regimen.  That is why the thrush happens.  Bacteria die off in the mouth from the chemo, the yeast takes over and your immune system can't fight it.  If you are getting Neupogen early or Neulasta you may not get thrush b/c it will keep your immune system up!  Also, the mouth rinses can help prevent it I think by keeping a better balance of the pH in the mouth...at least I'm assuming that's the mechanism (I have a geeky interest in understanding the "why" behind these crazy things happening to us!).  Even though I did the mouth rinses, my Neupogen wasn't started until day 9 first round, day 7 2nd round...so I got thrush both times.  Then I got it again just before round 3 b/c my whites continued to drop after the Neupogen was stopped, even though I technically wasn't in my "nadir" any longer.  My whites have gotten slammed by TCH.  This time, we started Neupogen day 1 post TCH...trying to get ahead of it and "bump" it up.  

Navymom - thank you SOOOOOO much!!!!  And HUGE congrats!!!!!!!   

envious of you ladies that are able to drink.  I cant find anything I want to drink.  I usually drink lots of water.  I do have iv fluids going, 1L per day, but I really need to get drinking.  Tried watermelon, dont like it.  day 3 post tx.

NavyMom - thanks for the encouragement! And congrats! ...sometimes it just feels like 'forever' during this whole chemo crap part of it. it's so good to see someone like you doing well!

For all you ladies out there with thrush... Nystatin seems to kick mine pretty fast... like overnight usually. But I also find that gargling with salt and a tiny bit of baking soda helps actually keep it from actually starting. Luckily thrush isnt painful... just looks nasty, right? 

I am wondering if anyone has nail pain after being on AC? Ive done my 4 rounds of it and noticed in the last two weeks that my finger nails are super sore. They havent changed colour at all but almost feel like my fingers were slammed in a door. Ill be asking my chemo doc about that on Tuesday I think. Among other things as usual!! 

Do many work during Chemo?  I will not be.  My Dr. advised against it because I am in Sales/Retail at the moment, on my feet all day and work with the public.  Usually someone is sick on the staff in the store and germs walking in the door everyday. I'm getting disablity from company and from the state.  I won't be working, but curious to put this question out there. 

Navymom:  Thanks for the words of encourgement.

Butterflylady:  I am working through chemo, but only have to go in the office once or twice a week for a day, but I am work from home.  I am very,very fortunate, because if I need to take a nap at 9:00 a.m. I can.

Dancetrainer:  Thanks for the info on the thrush.  I was wondering why I didn't get this around.  Probably because I had the Nuelasta treatment the day after.  Never thought about that.

To the newbies on the board:  Welcome.  The gals here are wealth of knowlege and we all support each other.  I did not get "sick" after chemo.  Just extremely tired, like I had been hit by a mac truck the beginning with the third day after infusion, 4th and 5th days being the worst.  Hang in there!  We're here for you!

Went to Ulta today to talk to one of the makeup artists about my eyebrows, which are thinning and eyelashes.  When she asked what she could help me with, I starting crying like a baby in the store.  Even though I went to the LGFB program, I wanted to get the right color match for me.  As far as eyelashes are concerned, she said if I were to use false ones throw them out after each use due to infection.  Needless to say, if I need them, it will be on special occasions only (i.e., my son's wedding!)  I hate going without mascara, but everytime I take it off, more eyelashes have bitten the dust.  I took a lint brush to my head today and so many hairs came off, I had to use it three times.  My DH and niece were laughing at me, but I got the tip from this board. 

Thanks everyone for your feedback!  I want to keep active, but just waiting to see how Chemo affects me.  Sounds like fatigue is the most common side effect.  Does anybody wear a mask when out to combat against getting sick just being outside with others?  This seems to be a big fear of mine, outside of actual side effects.  Luckily it is not winter months,with more bugs about. 

As far as hair loss, I've been debating hat or wig.  I think a hat might fit my personality, because I love hats.  There is a place a few miles from me that carries hats and wigs  specifically for cancer patients.  I'll check it out next weeks, see if I find something that suits me.  I think a wig during summer might be too hot.  Maybe I can get one wig just as another choice.  Prior to my surgery I had my hair cut, took off about 2 inches...closer to chemo, I'll get it cut shorter to ease myself into what will happen.  Not much choice in the matter.  Not sure how I'll react, but taking it one step at a time.  My boyfriend was joking and said he'd draw a treasure map on my head..lol...I thought it was cute. 

My boyfriend has been wonderful through this whole ordeal. We have been together 10 years (yes taking the VERY long route), but are in for the long haul. He is not as much of a "words" man, but his actions have spoken love.  By my side, helped with my drains, changing bandages, going to store, holding my hand in the Dr's office as I cried when I learned about Chemo.  Sometimes actions speak louder then words.  I love him so much.  I feel very blessed.  

Have been reading posts for a while, finally decided to chime in. Was diagnosed in February, been through many biopsies and had a lumpectomy on April 10th- had one drain for a week. I had my port put in on May 3rd. My first treatment of A/C was Tuesday, May 15th. Had the Neulasta shot the next day. Even though I was not hungry, I made sure I ate. Had a bowl of Chicken Soup about two hours after getting home from chemo and took a Zofran-by 6:30pm I was starting to feel a little queezy so I took Compazine and went to bed. Continued with Compazine through Thursday mid-day along with Emend on Wednesday and Thursday morning. On Wednesday, I ate poached egg and toast and took a shower before going for my shot. Had more eggs in the afternoon, and then two crackers with peanut butter (even though I am not a big fan of peanut butter) in the evening. Friday I had an appointment to get my lymphedema sleeve and felt ok to drive myself, after the appointment I stopped by a friends house for a while. I did work the morning shift on the weekend. I felt a little weak on Saturday and was back to myself- full energy on Sunday. I drank lots of water the day before chemo, and though the first few days. I must have slowed down too much because I had a bad headache over the weekend. Prior to my first chemo I did go to a local bc support group. I heard that eating lentils the night before chemo is supposed to help with SE's-so I made sure I did. Saturday thru Tuesday (after chemo) I had shakes in the morning with Kefir. Still ended up dealing a bit with C, some MiraLax and salads after I knew my counts were normal. Was trying to drink some prune juice (have in the house for my dad - but didn't like it so much. Was told to try plum juice- was much better now I take my MiraLax in plum juice seemed to work well for me. So far I have been able to work with minimal days off (took one week off for surgery)- two extra days with my first chemo. I work as an assistant manager for Walgreens-(retail). I am a little nervous about working Friday afternoon/evening- have the feeling I will end up sitting in the office unless I get a management call to go out to the floor and then cash outs at the end of the night. Chemo #2 (A/C) on Tuesday.

Butterfly, I unfortunately have to agree with dancetrancer as this was something I was looking into. Chemist advised against it as it offers no real protection. Was definately NOT what I wanted to hear but its true...

Rgina - Im not working atm as I am a single mum and I work for an insurance company in a call centre so its almost an like a hub of germs in there. I struggled with health when I had an immune system and picked up everything in there before BC so there is no point for me. Fortunately, there was a sickness policy attached to my benefits so that has worked for me.

I have had the mouth sores start around day 6-7. I also visited the dentist prior to chemo and had some extractions and teeth cleaned. I brush my teeth after each meal and use a mouthwash (warm water and a tspn bi-carb soda, i think u call it baking soda)every 2 or so hours or if it hurts. I noticed that the chemo stripped the lining from my mouth and tongue and this is what has made it easier for those little sores to start. Also got a lot of little ones at the back of my tongue. Avoid sharp food like crackers, take small bites. I eat alot of soup and eggs and mushy stuff at the moment cos its easier on my mouth. Its not pleasant but it doesnt always hurt, just some days worse than others. Hope that helps xxx

rgina - too much bacteria on fresh veggies.  For your reference:

Neutropenic Diet 

Edited to add:  This is only if your white count is really low.   

Great, half my diet is on the foods to avoid list:-(  Including all the items from my garden that I eat raw......

I have mostly cooked vegetables, only had salads once I knew my counts were normal. If my counts are too low when they are checked this round I will certainly not eat salads. I Brush my teeth frequently at home and have mouthwash at work to keep my mouth clean. Wash my hands frequently. I am generally very healthy, prior to my diagnoses, and have not been sick for a few years- I think I had a long lasting cold a few years back- otherwise I have lucked out on general sickness. I do take a multi-vitamin daily. The nurses said that through my treatments I could feel tired for a longer period of time. If I need to call out of work, I will. If at any point I need to take more than five sick days in a row, I will automatically go onto medial leave. I live at home with my 80 year old dad. He does ok for himself. When I have my down days my aunt calls and stops by, if I need anything she gets it for me. I try to make sure I get everything my dad and I need before my Chemo treatment.

I thought I set it up for my information to come up under my comments: IDC, 2.5cm, stage 2a.

Dancetrace thank you for the neutropenic link. I see that the kefir would fall into that category - think I will ask about what probiotic they recommend when I go in on Tuesday.

So far I don't have any mouth sores - but I know anything can change at any time.



Hugs to all!!