Starting Chemo May 2008

EAK: I won't have a port (at least not for the foreseeable future).  My surgical and medical oncologist checked out my veins (are they straight? Easy to find? Is there more than one candidate? Do I have a history of IVs/scarring?) and felt confident that -- provided I stay well-hydrated the 2-3 days before chemo -- I should get by okay with the veins I have.  Also, my surgeon said that given how easily I scar, I would prob be happier without the port.  So, I'm crossing my fingers!

Otter: Thx for the lead on the lint roller! It sounds kinder and gentler/less badass!

Question:  A nurse saw that I had written on the back of my hand and said -- "Hey! No more of that!" Has anyone else heard of dos and don'ts like this, e.g., with regard to rings, watches, bracelets?!

eak2863,   you asked if port was recommended, not really recommended but encourged because he wants to do an aggressive 2 week regiment instead of a 3 week and at this point what ever makes things easier for me im going for. I have alot of confidence in the surgeon who did my mastectomy and who will be inserting the port so that makes things easier. he said i will get the port on wed , chemo on thurs.  they will have the needle already inserted on wed so they don't have to aggrevate the already sore tissue the next day. I told him it might be an interesting night sleep with this thing sticking out of me!!!

What an exciting life we lead !!

Good  luck to all who have things going on tommorrow and thanks to those who responded ....otter i've been following your journey and am greatful for your insight

Hello ladies,

Just popping in from the Dec 2007 chemo group.

I wish you all the best throughout your chemo.  It can be hard at times and you will feel like crap, but it will pass.  I had my tx on Mondays and had lots of nausea and right to bed for the afternoon/evening of tx day.  For some strange reason felt pretty good on Tuesdays, and Wednesdays and Thursdays were the worst days.  Usually by Friday afternoon/evening I started to feel better again.  I lost my hair and frankly, I am so used to it now that it doesn't even really bother me.  It is growing back now and I am looking forward to not having to wear wigs in another month or two, as I'm sure the heat with a wig will not be fun.  My appetite of course was affected by the chemo, I found I thrived on hangover food the week of chemo (burgers, fries, pizza).  These are things I typically almost never eat.  But I indulged and my body consumed all those calories in recovering from the treatments.  I drank a lot of water and lemonade, which tasted better when everything else tasted murky.  When chemo ended I ended up weighing in at only 1 or 2 lbs more than when I started.  By the end of the tx (6 x FEC) my fatigue was pronounced, but 1.5 months later, now I feel almost back to normal and feel my body continuing to recover.  I am now halfway thru rads and so far so good and it hardly affects me.

Best of luck to you all.  There is an end to all this, and you will get there!  Be strong and supportive of each other. You will get to know each other very well and form a strong sisterhood.  I wish you all strength through the course of your treatments!

Hugs

FUBC

Laura

Kristy - sorry for your experience with your nurse yesterday.  Yesterday was my 1st treatment, dealt with 4 different nurses, 2 primarys and each was delightful.  I am fortunate and have a port.  I love it and am only getting 4 treatments.  Tood bad you didn't opt for one with the frequency of your treatments.

Certainly advocate fo your self next time.  Don't hesitate to talk to the nurse manager if a problem persists.  I'm an RN and would like to think we are all good at what we do but sometimes that isn't the case.  She could have been having an off day when it came to your IV sticks but you have one good arm with good viens, let's work on keeping it that way!

Pray over her or whoever before the next time (even if it's a prayer in your mind between you and God).  You need prayers for your successful treatment and your care givers need them too!

Have a great Friday.

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FYI, I HAVE BEEN UPDATING THE LISTS ON "TIPS FOR GETTING THROUGH CHEMOTHERAPY" (another thread) BUT NOT THESE.   

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I'd been collecting pointers which my friend Miki graciously compiled/organized for me.  Since nearly all of this repeats others' posted information in a different format, I'm happy to delete it if its redundancy and plagiarism bothers anybody! I mean no harm.

As with all things chemo, everyone is different.  What works for one person (or one therapy), may not work for everyone.

Chemo Tips - Compiled
(or Everything you wanted to know, and a whole lot more)

Pre-Chemo/Things to ask about
• What sort of antiemtics (anti-nausea meds) are you getting? According to American Society of Clinical Oncology guidelines, everyone should be getting Emend, a steroid (dexamethasone aka decadron is the most common), and a medication like Kytril or Zofran (the Aloxi you may get in your IV at chemo is in the same family of drugs). Drugs like phenergan and compazine are NOT considered sufficient but might be used in addition to the others.
• Make sure you are given the drug EMEND for the nausea.

• Eating a popsicle, or something else very cold, while being given adriamycin may prevent mouth sores.

Possible side-effects

General care
• Drink as much fluid as you can
• For moisturizers, you probably want something as scent free as possible.
• If you get a manicure or pedicure, bring your own manicure set

• To help keep your RBCs up, one person recommended a lot of peanut butter. (Miki note: I'd translate that to really saying "eat lots of protein.")
• Get soft, seam-free (or as seam-free as possible) hat for sleeping-in

Hair loss

You may want to get a silk or satin (very soft/smooth) pillowcase for when your hair begins to fall out; scalp may be sensitive. 

I got my long hair cut short pre-chemo. No clue how to style short hair. My "stylist" said my I should style my new short hair with the tips of the fingers applied to the tips of the hair (rather than my hands).

When hair starts to fall, a lint roller helps to remove lingering hairs.

Metallic taste
• Use plastic flatware instead of metal
• Biotene mouth wash (and/or toothpaste and chewing gum, lemon/lime cordial)
• Oasis products were also mentioned

Port care

• • The nurse may clean the port by injecting Heperin into it. A horrible taste can sometimes be avoided by holding your nose while the Heperin is injected. 
• • A numbing agent may make entry in and out of the port less painful.

Mouth sores
• "If you get mouth sores, there's a little cocktail you can whip up with liquid benadryl and Maalox."
• I put lemon or lime drops or slices into my water glass -

Hairy tongue 

• Frequent cleansing with combo of water, baking soda and salt is recommended,
• Sucking on lemon wedges to re-encourage salivary glands,
• Brushing one's tongue with a toothbrush, hydrating with water. Cytoxan seems to mess with the salivary glands. 

Pain/aches
• Specifically if you are going to be getting Neulasta, Aleve was recommended as a pain killer for aches. The poster suggested taking one 30 minutes prior to the Neulasta injection, and then regularly for 2-3 days after.

Ibuprofen

• (Miki note) - in general, I think the feeling is that Tylenol is the first pain killer of choice as it has the fewest possible side-effects

Sleeplessness
• Ambien CR was recommended because the CR - Controlled release - allowed for her to get to sleep and stay asleep

Acid reflux/indigestion
• An H2 blocker such as Pepcid or Nexium

Constipation
• Colace (docusate sodium) is an over the counter stool softener to have on hand.
• Senekot-S is a gentle laxative with a little Colace added in.
• Eating active culture yogurts (e.g., Activia) is recommended by some
• Snacking on things like prunes or dried apricots can help
• Lots of water helps here, too.
• I take one square of chocolate ExLax the night of chemo, and another one the following evening. Then I drink gallons of water and tea. I also eat Activia yogurt every single day. So far, so good. I think the secret is taking something at the same time as the chemo before things can get really bottled up, so to speak.

Diarrhea
• Imodium is good for stopping this
• Key worry is dehydration, so keep drinking as much water as you can stand
• Stay away from sugary things, as refined sugar can aggravate diarrhea
• From a dietary perspective, you can try the BRAT diet: Banana, Rice, Applesauce, Toast, which is often very helpful.
• One recipe offered:
o 1 Green Plantain (not banana) Usually Spanish stores or grocery have
o 1 garlic clove
o Olive oil
o Boil the plantain and add a pinch of salt; mash it and add garlic and olive oil (note from Miki, I'd be very cautious about how much olive oil).

"Nether Region" Care
• Another tip - keep a squirt bottle by the toilet and rinse your self off with warm water after urinating for the first week or so. The chemo often burns on the way out, causing discomfort. I used an old water bottle and when I got this tip earlier on-line the person suggested a ketchup bottle. If the water rinse doesn't help - which it did help - but still got sore - take Uristat or AZO - both over the counter. These are analgesics which help with the burning and pain. But remember to have yourself checked out if you have bladder symptoms, because lowered bloodcounts can lead to bladder infections.
• (Miki note) If you wind up with diarrhea, I strongly recommend the flushable moist wipes; they really help with general soft tissue irritation.

Hello Ladies. This is Ro from Alabama and I will start chemo on May 22. Not sure what to expect but I am trying to keep a positive outlook. I was told I would have 4 sessions of T/C. Treatments will be every 3 weeks. I will stay in touch.

And welcome Ro!  Sorry you're going through this as well, but we're all here together!

I want to give another nausea regime from someone who is also receiving T/C.  I am given emend to take when I sit in the chair (I could take it earlier, but it was reccommended to wait intil then incase my counts weren't good.) I continue that on days 2 and 3  I receive Aloxi and decadron iv.  I begin taking zofran the afternoon of day 1, take it twice a day for days 2 and 3 and the morning of day 4 (a total of 6 doses).  I also have activan and compazine as recovery meds.  I was told to take 1 as soon as there is the faintest feeling of nausea comes on, and continue every 6 hours.  If I still feel it 2 hrs. later, take the other one and that it was ok to take both (or all 4) at the same time if needed.  I haven't needed any of the rescue and have not had a moment of nausea.

Hi collector.  I can't say anything about A/C or dose dense since I'm getting TC every 3 weeks.  I don't have a port, but my veins scream, I'm here, take me, use me. the techs and nurses at my site are fantastic and I've not had a problem.  If, however, it took them 10 minutes to get locate a vein and start, I would demand a port.

familyrocks - you're showing your age - lemonheads came around with my kids were kids:)

Jolly ranchers are good too.

Hi rockthebold,

Thank  You for the great tips. I am starting chemo on Monday, May 5th. The list of items you provided is very helpfull. I bought many of them to help myself thru this experience.

beachmom: aaahhh. that makes sense. i bet she wants me to protect my "lymph node surgery" arm to reduce my risk of lymphedema. thanks!

for what it's worth, i'm updating the list and the tips every now and then. for instance . . . time for a new shower curtain liner! 

Several "veterans" (inc an aunt who has had chemo 3x -- and just got back from 16 days of hiking!) suggest I focus my bacteria-reducing efforts on the kitchen, the bathroom, and having clean pillowcases, using my own towels, etc.  That seems much less overwhelming.

I'm going on the assumption that 

a) as much as I try to prepare, it is impossible to be fully prepared for this!

b) feeling relaxed and optimistic (and being as un-stressed as possible) does wonders for the immune system.

To everyone starting on Monday, May 5th (hello, eak!).  

Go, people, go!  Otter has already jumped in the pool! Eak, I'm right behind you on Wednesday (as is familyroks, I think and then maybe Christine . . .) ! We're rooting for you!!!!!!

Hi all,

A great big "hello" to everyone and "good luck" to all those starting chemo this week...maybe even me!

Collector - I think you are wise to get a second opinion.  I am waiting on a second opinion for my pathology.  I think it's absolutely essential that we are "comfortable" (Ha!) with what we are doing in treatment, even if it's just mental comfort that we are doing the right thing.

Rockthebald - I think I need to re-read your list.  Looks like I will be adding some stuff to my shopping list today. 

About LE - I didn't realize that there was risk of lymphedema if you still had lymph node on that side.  My bs did not mention any risk and I had at least 2 removed (can't remember if it was 2 or 3).  My onc (that I have seen twice) also has not mentioned any risk and we even talked about my veins (vs. a port) and he checked both arms and said they are o.k.  Hmmmm...maybe I need to ask someone...I HATE finding out about stuff like this.  Here I wasn't worried at all about LE and now I'm feeling concerned. 

A friend of mine who had bc 7 years ago (and still cancer-free!) said it was like that for her.  She would come to terms with a certain piece of information and then...WHAM!  Something new would come up and throw her all off again.  That is one of the parts that I hate the most.  Oh, well...better get used to it I guess.