So Many Chemo Questions!

I actually posted this on the New Members page but realized that I should have posted it here!

HOC,

You do not need to read all at once and do all of the following.
Posting as a FYI..........pick and choose what might be helpful.

Lee posted some great info on chemo on
http://forum.tnbcfoundation.org/did-anyone-get-by-without-neulasta-shot_topic10961_page2.html
Will quote it here:
Newly diagnosed remember: Follow your oncologists plan......and/or ask questions.....if anything that
follows is different than your oncologist's plan.

Lee21 wrote:

"........
Be sure to drink plenty of fluids today and tomorrow (I was told to drink about 2 liters of fluid) so that the IV will slide right in and the excess chemo will get eliminated (Cytoxan can also cause cystitis). If your onc is giving you Benadryl, it will make you quite drowsy. I also asked for Ativan to take the edge off (makes me drowsy in addition). I bring reading material (on iPAD), ear buds to plug into iPAD to listen to music, Gatorade/water as well as a variety of foods (trail mix, fruits, crackers). Those hours at chemo can be quite long. I'm not sure if Taxotere causes neuropathy as frequently as Taxol - when I was on Taxol initially and Cisplatin later, I took Vit B6 100 mg (from Walgreens) twice a day, acetyl L-carnitine 500 mg (from Whole Foods) twice a day and glutamine 5 gm (powder from Vitamin Shoppe) three times a day. I don't know if it helped or not - I developed low grade neuropathy in fingers and toes. I also took Miralax starting the day before chemo and through the week. Constipation is caused by the anti-emetics they give you. You might need to figure out what is optimal by trial and error. Also the Decadron (dexamethasone) they give you to take gave me insomnia for a week. Very importantly, I brushed my teeth and rinsed my mouth with baking soda/salt mouth wash after each meal. Oral hygiene is key to minimizing discomfort during chemo.
I'm sure your care team has told you all of these things; there are other things I am forgetting.
..... I took Prilosec (a proton pump inhibitor) starting the day before through 1 week-10 days after each cycle. Prilosec minimizes heart burn. Over the counter Prilosec is much more expensive than the generic form that your doc can prescribe."



I have posted some info on chemo on other threads.   
Since I am not editing what I posted previously,
there will be some repeats of what Lee said.

Chemo priorities:
-   All chemo side effects are possibilities not probabilities.
           Yes, there are side effects.   But there is great variation.....and until one has had the 1st chemo
                    one may as well hope for the best.
            It is reasonable to expect some fatigue.
-   Hydration, hydration, hydration
-   Reasonable activity.     Again, large variation.
               Some woman walk for half an hour each day.
                   Some women walk from the bedroom to the kitchen.
               This is not the time to "push" oneself. Try to walk a little (or as tolerated) each day.
               Listen to your body.....even if somedays, one does spend most of the day in bed.
- After chemo with all the anti-nausea meds, figure out what will keep bowels regular.
               Prunes, bran cereal, colace etc.   Check with your onc re: meds including over the counter.
               Many find the fiber cereal cereal and colace helpful the first few days after chemo.
                  Be sure not to overdo constipation prevention!!! Again, one will have a better idea of what
                  one needs after the first chemo.
- Take all the PRN meds (meds ordered PRN-as needed) at the first sign of a symptom....until one
               knows how one responds to chemo.
- If one has Neulasta, confirm with MD one can take over the counter Clariten with Neulasta.
             Some get bone pain with Neulasta and the Clariten helps.   The Neulasta injection is usually
             given the day after chemo when there is concern for low white blood cell counts due to the chemo
             protocol one is one. The dose dense protocols and TAC chemo protocols usually include
             Neulasta (one injection) or Neupogen (injection given over several days). Discuss with your
             oncologist re: YOUR plan.

I am sure you have good info on chemo from your cancer center. There has been good info
posted on other various forum threads.
If you have enough info, disregard the following.
Otherwise, pick and choose if anything would be helpful to you.
Thought one book from the public library had a lot of good info.
"Chemotherapy Survival Guide"   (Library call number: 616.99MCKay
by Judith McKay, Tamera Schafer    (2009)    
(Am sure there are other books.....and better books.....it's been over 2 years but wrote the
title and author of this book down as , at the least, it was a good general overview and
what I thought very good info......(always confirming anything in the book with my MD
when needed)
Remember: all side effects are possibilities and not probabilities.
   Note: People do get side effects......but until you know how chemo will effect you,
                 the side effects are possibilities. Few people (if any) do not have some degree
                 of fatigue. Hair loss with chemos resulting in hair loss. Otherwise, it is so true
                 every one responds differently.
Nutrition: see an oncology nutritionist (if possible). Protein important for cell repair.
                   Hydration important.
Exercise: Any exercise is better than no exercise.
                 People will vary on what they can do during chemo.
The post on the TNBC resource/news/tips forum "Chemo Tips"
http://forum.tnbcfoundation.org/the-chemo-tips_topic3101.html
    Many good ideas here. As usual, check with you MD re: any supplements suggested.
    Would also recommend checking with your MD on 2 of the things mentioned in chemo tips
       (as believe there is a difference of MD opinions on some of the things mentioned)
    Check with your MD especially on: Colonics. Use of ice on nails.
For dry mouth: artificial saliva.   Biotene Oral Balance (gel)       saline water mouth rinses/gargle.
                            Biotene toothpaste.    
Really important to take anti-nausea meds as directed. Take PRN anti-nausea meds at first sign of
    any queasy feeling (at least until you learn how you respond to chemo).
Check with provider about what to use for any heartburn like symptoms.
If you plan on getting a wig, get before you start to loose hair.
Prior to taxol: check with your MD about starting Vit B 6 100mg daily one week prior to taxol start.
    Was told to continue for 6-12 months after last taxol dose. Some feel Vit B 6 decreases or prevents
    possible taxol side effect of peripheral neuropathy.
Make plans to have help "available" for most of 1st week after chemo.......then you will start to know what
     help you may need.   You may not need any help. You may need help on chemo day and for 2 days
     after. You may need help only on day 4 etc.   As usual every, one is different.   By having help
     available to call if needed the 1st week, it may help make the week easier. If you have children,
     it would be great if you could arrange help on a couple of days regardless of how you feel....
     just to be sure you can get some extra rest during chemo.
Hopefully, a caring and calming person can accompany and stay with you while you get chemo.
Might consider some "Good Luck" object to bring with you to chemo. Or some people have a chemo
      hat/cap or T-shirt.
Think of some positive affirmations or sayings for actual chemo infusion.
       Reportedly, it is better to say/think positive statement....no negatives or negative connotation words.
       Ex: better: I am healthy. All my cells are healthy. I will have a long healthy life and see my children
                            grow up and see my grandchildren.   My treatment plan is healing me.
              not:      I have "no cancer".     etc.
              Am sure many people have said: I have no cancer and have been healed. Again, reportedly,
                  it's better to say positive statements.
       Some people are not into positive affirmations......and that's OK.
       Disregard this info on positive affirmations if it does not seem right to you.
Give some thought of how you want to spend the chemo time:......if a busy woman/mom: sleep!......
      maybe a magazine or book.....maybe some handiwork if you knit or sew.....or write letters........
      if you bring music to listen to, you may want to not bring your favorite songs (just in case
      chemo   memories attach to favorite songs)........or other.    
      Can try different things during chemo time.
Take time to use the bathroom (have an empty bladder without chemo in it ) when you leave to go home
Hopefully, since your anti-nausea meds will be working, you will not need foods/drinks that you know
       help when you have a queasy stomach.   You might want to have such items in the house......and
       then you can use when next family member has a queasy stomach (not you!).
Some of the things mentioned here are also on the chemo tips post.
It has been suggested that when good friends/relatives asks: What can I do to help?......Have some
specific things that would be helpful for you.   Bring a meal over the night of chemo days. Help out with
rides for the children for their activities/school etc.   Think one of the best ideas I have heard: delegate
one of your best friends/relatives to be "your volunteer coordinator". Then, every time some one says:
How can I help? You can say: I'll give your name and phone/e-mail to my volunteer coordinator. That
way you let that one person know what you need and that one person sets up the help ( or some system
                    like this that would work for you and your family).
Some have found "My Cancer Circle" "lots a helping hands" by Cancercare.org a good tool for
organizing help.   http://mycancercircle.lotsahelpinghands.com/caregiving/home/
(Some may have made adaptations to this tool......whatever works)
Another thought: BE READY when people ask what they can do to help.
             Suggest a meal on chemo nites.
             Suggest a call when they are going grocery shopping....and they can pick up essentials for
                      you.
             Ask if you may call them if you need a ride.
             It is really good to have some one go with you for your chemo sessions.
                   Choice wisely. When an appropriate person to accompany you to chemo asks what they
                        can do, suggest go with you to chemo.
             The things that would be helpful for you.
             Once you have done the above, you may not need any help........but it's easier to decline
                   or stop help......then to start it up mid treatment.   Also, try not to decline help too early....
                   as some fatigue can be cumulative.   Yes, one could do a lot one self.   With help, one has
                   more energy for healing!
I liked to be by a window......so I always asked for a chemo chair by the window......
               lucked out.....got a window seat every time!
Start your own home/personal medical record.
    Good tips on http://forum.tnbcfoundation.org/medical-binder-the-organized-patient_topic10842.html

Once you have your first chemo, you can figure out what works best for you for the most healing
experience. You have read it many times.......and it is so true.......once, one has the 1st chemo behind,
one does feel better on one level as one knows what to expect.

These are just some thoughts. Pick and choose what feels right for you. You know your needs best.


With caring and positive thoughts,
Grateful for today..........Judy


When one have the time to watch, one may find the video on chemotherapy by the Fox Chase Cancer
Center helpful: http://forum.tnbcfoundation.org/chemo-info-video-fox-chase-center_topic10276.html


Edited by Grateful for today - Mar 06 2013 at 5:18pm

Thank you so much!  Lots of helpful information!  Since posting I was able to find a neighbor who's going to go with me Friday for the hydration/Neulasta shot.  That way I'm covered in case I can't drive, and have someone to visit with while I'm there.  I talked with my physical therapist (from the mastectomy) and she said I can call anytime up to appointment time and cancel if I have to.  The standard 24 hr notice won't apply.  I'm heading out now to volunteer in my sons classroom and let the teacher know I think this is the last one.  I agree, LOTS of germs around elementary schools!

Found the helpful hints helpful!!! I start on the 18th. Good luck HOC and everyone else starting.

HOC,