February 2014 Starting Chemo Club

Njmom3-  Here is the link to the Chemo Discussion Forum Thread that has links for Newbies ... http://community.breastcancer.org/forum/69/topic/785189?page=1#idx_1

Moderators wrote:

The main Breastcancer.org site has extensive information about Chemotherapy Treatment, including:

• How Chemotherapy Works
  
• Who Gets Chemotherapy?
  
• Chemotherapy: What to Expect
  
• Managing Chemotherapy Side Effects

There's also some great tips and practical advice on the following discussion board threads:

• Tips for getting through chemotherapy
  
• More Tips (and a Shopping List) for Getting Through Chemo
  
• PORT PLACEMENT: Detailed description of process
  
• Head Covering Options for Hair Loss
  
• wig advice
  
• Cold Cap Users Past and Present, to Save Hair
  
• Hair Hair Hair -- Another Question
  
• Taxotere, Carboplatin and Herceptin

There you will find the "shopping list".  I did not purchase everything on that list but I did purchase items that I could keep at home and have on hand in the event I needed them asap.  It also depends upon your infusion center.  Fortunately, mine had everything one could think of having with them----- snacks, water, ice, juice, coffee, and warm blankets. Because it is a major hospital cancer center and connected with other medical buildings, it was great to be able to have my husband get lunch for the both of us when I had my infusions.  Yes, you can eat as well as drink while having your infusions.  If you need to go use the restroom and hooked up to your IV, just ask the infusion nurse to unplug your IV pole from the electrical socket and head down to the restroom with the pole in tow.  ( BTW I hope this isn't too much information--- there is a practical side to chemo infusions.... lol)

Njmom3 Looks Good Feel Better is not run by the American Cancer Society. I do believe ACS provides wigs and maybe some funding but they are run by The Personal Care Products Council Foundation. That being said I loved the program. Didn't care much about the stuff I got but great tips on how to apply make up, care for your skin and even got a demo on how to wrap scarves. I swear I look better today than before chemo because of the make up tips.

I do believe they work together but I worked at ACS this spring/summer/fall for 6 months. They are not one in the same. I know that ACS might not be giving out wigs at their facilities anymore so that's why they partnered with LGFB. Also usually a social worker from ACS manages it at the the treatment centers.

seaniebopp-- I have to confess that I didn't cook up the recipes in those books but really looked at the books for some ideas as to what to eat and when.  Usually the first few days after chemo, I would eat rather bland meals aka my "white meals"--- potatoes (mashed, baked), mac n cheese, baked chicken, baked fish.  I also kept a food diary to help me keep track of what I ate so I would have an idea of what I ate after each round and see what agreed with me.  I ate 5-6 small meals a day so my tummy was never totally empty.  While I was in chemoland, I gave up salt and butter.  I couldn't stand the taste of salt and didn't like the texture that was left in my mouth and on my tongue after eating butter.  Fortunately, I did not have any food restrictions on what I could eat.  I did not eat sushi or rare meat or eat at buffets/salad bars and stopped getting those things "get it yourself" condiment bars and was careful about where I went out to eat.  Yes, one can still go out to eat so one doesn't feel like she is totally confined to eating at home every meal. 

Oh....are there food restrictions during chemo sometimes?

I was told I could eat most anything I wanted as long as it was thoroughly cooked or, if it was raw, thoroughly washed. I ended up eating ceviche once and tuna tartare (I live in LA and we eat crazy stuff here) twice during treatment and was fine. I just made sure I waited a couple of days after I finished up with my Nupogen shots. I didn't have any trouble but I was risking it and it probably wasn't the smartest thing to try. I think I just got so sick of just eating those "white foods" and carb loading the week after chemo that I wanted to really craved fresh and healthy foods when I started to feel back to normal between chemo treatments. Looking back, I probably should have been more careful of what I ate. All it takes is one little leaf of spinach with some bacteria on it to have sent me to the hospital. 

Okay, well those limitations make sense. I'm going to see my MO tomorrow, will have an iron infusion due to being anemic. Hope to have a much better idea of when this chemo thing will start!! Anyone have an iron defiiciency going into chemo?

tangandchris- If you are anemic, you can try to eat iron enriched foods to help try to get those RBC numbers up.  Those foods are lean red meats, spinach, iron enriched cereals ( cream of wheat, Total, etc.)  Here is a link to a food data chart for iron: http://apjcn.nhri.org.tw/server/info/books-phds/books/foodfacts/html/data/data5e.html  that may help you.  You can also put in a search on the Livestrong.com website for foods with iron.  Try not to fret because you are having an iron infusion.  The chemo does affect the red blood cell counts to.  My RBC dropped after each round of chemo but not reach the point of requiring a iron infusion.  Hope this helps.

Gardengirl66- Good luck on Friday in the Big Girl Chair/ aka BGC.  Make sure you hydrate the day before chemo / tomorrow.  It will help make vein access for blood draws, etc.  a little easier because your veins are plump and ready to go.  Don't be surprised at the length of time that this first infusion takes.  You will be learning the general routine of your infusion.  Remember, if it is lunch time and you are still being infused, make sure you get some lunch.   No need to be hungry while you are being infused. Drink icy cold water and suck on/chew on ice during the infusion to help minimize the mouth sores.  Don't hesistate to ask the infusion nurses questions as they are taking care of you.  Remember, you are not alone and you are not self administering the chemo.  Wishing you the best!!!!

I used an iron supplement and I guess it worked because I never got anemic (and I don't even eat meat except fish). It's German and can be found online. It's called Floradix - it's a liquid and tastes faintly like metal. Also, Miralax works great on any constipation issues that arise. That's a must-have. 

Well, no iron infusion today....they didn't have it yet. The truck was late because we are getting snow in TX and everyone looses it when that happens. However, I did get a date for my chemo start and it is 2/13, next Thursday. I will get the iron infusion the Friday after when I come in for the Nuelesta shot. I also found out that I'm B12 deficient, so I will be giving myself shots of that too.

tangandchris - I had two iron infusions within the 8 months AFTER chemo.  I was just barely in the normal range for hemoglobin before starting chemo, but we did not check my iron.  It may have been low to start with.  I almost had to have a blood transfusion during chemo due to be very anemic, but I squeeked by without one. 

h0pe, I did not develop permanent neuropathy.  I did have some tingling in my face and hand, but fortunately it did not last.  I took some supplements (with my onc's approval) to try to avoid permanent neuropathy.  It was my greatest fear as well.  If I had developed significant tingling I had made my mind up ahead of time to ask for my dose to be reduced.  As it was, my dose had to be reduced due to severe reflux (not controlled by multiple meds) and ringing in the ears.  

Hello ladies, another one here to reluctantly join this crappy club (ha ha, nothing personal).

I'll be starting four rounds of CT on February 20th. I think the wait is going to drive me nuts -- I just want to get this over with! Although I'm sure I'll feel differently on the 19th...

Many thanks to our 'big sisters' kjliberty, Melrosemelrose, lago, gildedcage, dancetrancer & others for adopting us (okay, I blew that metaphor). I've learned so much from all the reading I've done in these forums, and it's lovely to have your knowledge & experience here on tap. I tend to lurk around not saying much, but I'm sure I'll have a bunch of questions once I start.

My thoughts are with all those who have already started this journey, and particular good wishes to kaluha, Gardengirl66, seaniebopp and anyone else about to start!

(Gardengirl66, if you don't mind me asking, whereabouts in BC are you? I'm being treated at the main Vancouver BCCA.)

I am scheduled to start chemo on Feb. 25.  Just thought I would jump in and join the conversation!  I had my port inserted when I had my surgery, and I am still waiting for the surgeon to remove the drain. It's been 2 weeks and I still haven't gone below the threshold for him to remove it. Ugh!  My MO wants me to be totally healed up from the drain before starting chemo.  I haven't made a 100% decision on which chemo course to choose (he gave me two options,) but I am leaning toward the AC-T with 4 rounds of AC every 3 weeks, then 4 rounds of T every 2 weeks.  I wish everyone on here good luck!