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AnnaTNBC/2013 View Drop Down
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    Posted: Mar 17 2013 at 9:41am
My name is Anna from Toronto area and I am 55 years old.  I had lumpectomy and removal of 2 nodules on February 6 with the following results: 2 cm tumour, the smallest clear margin 1 cm, grade III and clear/negative nodules.
I will be starting the following chemotherapy next week: 4 sessions of Doxorubicin (Adriamycin) and Cyclophosphamide followed by 4 sessions of PACLitaxel (Taxol) administered every two weeks.  I also will have 3.5 weeks radiation after the chemo.
I am not looking forward to the next week and I am anxcious about long term effects of chemo.  Emotionally I have been doing well until now, but this week it changed.  Generally I am down to earth, no-nonsence, pragmatic type of person.  Any tips/advise with respect to this treatment would be appreciated. 
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 10:05am
im 62 ive done chemo twice once in 2007 and last year , there will be many on here to give advice.. it wasnt as bad as i thought it would be.. and would do it again if i had to,, but hope i dont,,, i also did radation twice...i dont know what advice i would give, there are so many and it is so different , each chemo and each person,, as for myself , take it easy , dont try to do to much,, i never had any stomach problems so eating wasnt a problem, i was fine most days but around 3 days after treatment most , are down and out, i wasnt sick just tired, hang in there there will be other on to give you advice, its kind of likr child birth , you tend to forget it   Beck
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 12:37pm
Hi Anna,

Welcome to the forum.   

There is a thread "Members in Canada";
http://forum.tnbcfoundation.org/topic10264_post111518.html#111518
I just posted there that you have posted on this thread.
Some members like to read the forums and not post.
Some members read and post on the forums.
Some members like to be aware of other members in their area.......in case, they go to the same
    Cancer Center and/or conferences and there might be a chance to meet.
Some members like to post and for the time being prefer not to try to meet anyone on the forum.
In other words, there are many ways the forums are helpful.......all ways are respected.

Thinking by " clear/negative nodules" you mean clear/negative axillary lymph nodes.
You had asked about tips on chemo. I will find some info and considerations that I posted recently
about chemo on another thread......and then post them here on your thread.


With caring and positive thoughts,
Grateful for today...........Judy
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 12:55pm
Hi Anna,

The anticipation and fear of starting chemo is tough and sometimes the hardest part of this journey.  There have been several threads where others have offered advice during treatment.  Please keep us posted on how you are doing and always post questions.  We are here to help.  My biggest advice on chemo:  hydrate!  Drink lots of water (fluids) the day before, day of and after.  I'm a big water drinker, but tried to increase my fluid intake during chemo.  Also many times chemo treatment meds will cause constipation the first few days so using a stool softener like Collace will help.

Donna





DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 1:09pm
Anna,

Thinking others will be posting good tips and sharing experiences as Beck and Donna did above.
When I tried to post some tips/suggestions in the past.........it did not come out brief.
Do not want to overwhelm you with information.....so I separated info into chemo priorities and
other chemo information.

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......
     or if you have enough info already, just disregard the following:

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.   (Include some fluids other than water.)
-   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 on. 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.

Other chemo information/suggestions:
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
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 3:08pm
BY YOUR AGE ANY KIDS YOU HAVE IM SURE ARE GROWN , THAT WAY YOU CAN HAVE SOME QUIT ALONE TIME , I WAS ABLE TO DO THAT WITH THE LAST CHEMO, IT REALLY HELPED, I DONT KNOW HOW THE YOUNG GIRLS WITH SMALL CHILDREN DO IT, MY GRANDDAUGHTER WHO LIVE WITH US WAS ONLY 11 , THE FIRST TIME, EVEN AT 11 THEY NEED YOU TO BE THERE , BUT THIS TIME SHE WAS 15 , 16 NOW AND DRIVING, IT WAS SO MUCH EASIER, I TRULY THINK THE ONES WITH SMALL CHILDREN ARE SOMTHING ELSE , I WISH I LIVED CLOSER TO SOME OF THEM AS I LOVE LITTLE KIDS AND PETS, I WOULD DO EVERYTHING FOR THEM BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 3:19pm
I HAVE SOME STRANGE ADVICE TO GIVE... WHEN I DID CHEMO THIS LAST TIME I WAS VERY CAREFUL USING THE TOLET, I WOULD WIPE IT DOWN, I WAS SO AFRAID THAT WHEN PEEING I WOULD GET SOME ON IT , YOU ARNT REAL STABLE SOMTIMES WITH CHEMO. I DONT KNOW IF THIS IS WHAT HAPPEN OR NOT BUT IT HAS BOTHERD ME.. WE HAVE CATS, AND MANY TIMES THEY TEND TO DRINK FROM THE TOLET , ONE OF OURS BECAME SICK, NOTHING WORKED ON GETTING HIM WELL, HE WAS YOUNG AND IT CAME ON SUDDEN , HE WAS A TOLET DRINKER, I THOUGHT DID I FORGET TO CLEAN THE TOLET GOOD, I DONT KNOW, BUT IF THIS SAVES ANY PETS, IM GLAD I POSTED IT HIS NAME WAS GET . BECAUSE HE WAS A STRAY, AND EVERYONE YELLED GET! WHEN HE WENT IN THEIR YARDS, AND HE STATED THINKING IT WAS HIS NAME, WELL WE TOOK HIM IN, ANYWAY SAD STORY GET DIED.. AND IVE ALWAYS WONDERED DID I DO IT   DID I FOR GET... BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HOC Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 5:32pm
Hi, Anna,
 
I'm in a similar situation to you, although I had a mastectomy January 29th and won't be doing radiation. I started chemo last week.  I'm getting doxorubicin and cyclophosphamide every 2 weeks followed by 12 weekly Taxol. I got great advice from people here on dealing with the anxiety of starting treatment. I had some issues with the chemo, but overall it wasn't as bad as I feared. I became lightheaded even before the chemo drugs were given, most likely from the Aloxi which was in the IV to prevent nausea. I also got a headache about an hour after. The plan for next week is to slow the infusion rate on both the Aloxi and the Cytoxan (cyclophosphamide) to see if that helps. Other than those, I felt pretty good on Friday, still able to go to physical therapy and do stuff around the house. With the lightheadedness I couldn't drive, though, so I had a neighbor pick up my son from school and take me in for my Neulasta shot. Saturday was worse. Still lightheaded and headache, but now I had nausea, too. Sunday was more of the same. I spent the majority of the weekend sleeping on the couch while my husband took care of the boys. By Monday I was pretty much back to normal. I still didn't drive because of some lingering lightheaded and headachey symptoms, but walked my youngest son up to the bus stop, cleaned up after the boys from the weekend, and made dinner that night. By Tuesday I felt great. Part of my problem was mismanagement of the medications at home. I'm not much of a meds taker so I waited for symptoms and then tried to treat them, which is much harder to do. Next week I plan to take the nausea meds regularly for several days after. Hopefully between that and the slower infusion things will be better. I'm not sure if this helps, but I know hearing what other people went through helped me a lot. And, I'm not dreading the 2nd nearly as much as I did the 1st!
 
P.S. DRINK PLENTY OF WATER!! (The advice of EVERYONE I talked to!)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AnnaTNBC/2013 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2013 at 9:13pm
THANKS A LOT TO ALL OF YOU!!!! 

ANNA
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