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Topic for Newbies and Chemo

cinnamonsmile
Posts: 1049
Joined: Dec 2010

With all the new people coming to the breast boards here on CSN, I thought it would be helpful for us to give hints, tips, basic information on how to handle chemo and the related drugs given during chemo, side effects tips, nutritional information etc.

I have been seeing quite a few new people coming into the chat room (not necessarily just bc'ers) and thought it would be helpful to have an updated topic about this. (Then I could direct people to this topic in the chat room as well. I didn't have chemo, so I rely on passing on information I learn from everyone here).

Would you all be so kind as to write out your tips for chemo again here?

 

Puffin2014's picture
Puffin2014
Posts: 74
Joined: Jun 2014

Thanks for starting this thread, I'm day 2 first chemo treatment and will be following what people have to offer.

CypressCynthia's picture
CypressCynthia
Posts: 3973
Joined: Oct 2009

I take a chemo bag with me every time I go with a lightweight fleece blanket, ear plugs, slipper socks, my Kindle, my pillow, a ginger ale, etc.  Anything that helps me get through it.

As to side effects, we are all so very different.  I had trouble (as per usual) with nausea and vomiting.  My onc finally read me the riot act and said I had to get it under control.  The dietician told me to look at food as medicine and to make myself at least drink a couple of Ensures or the like.  My zofran was increased to 3 X day - no skipping doses.  The insurance company said I was allowed 12 zofrans per month.  We went back and forth with them and got the medical exception, etc. from the onc and finally got that improved.  After that, I did get it under control.

Diarrhea was another problem and I found that lomotil (prescription) worked best for me.  This is something that you will have to communicate with your onc about - if you even run into that problem.

Thrush was another issue for me.  It kept coming back.  Finally, I ended up on Nystatin and MuGard and that kept it under control.

If you have preexisting thyroid disease, have someone check your tsh from time to time.  My thyroid went nuts on chemo - first very hypo, then very hyper.

Don't let this scare you, because my body is my body and yours is unique to you.  My biggest advice is to stay in close contact with your onc's office if you have serious problems.  They will help you figure it out.

Good luck!

desertgirl947's picture
desertgirl947
Posts: 431
Joined: Oct 2012

I did chemo every other week eight times.  First I had adriamycin/cytoxin; then I had taxol.

Where I had my infusions, there were pillows, blankets, snacks, and drinks I could ask for.  I found that was easier than packing anything in my bag I always took for chemo. 

I had a bag I called my chemo bag.  In it I had puzzle books, pencils and pens, Kindle, my small clipboard with the questions on it I wanted to ask when I went to chemo.  I never drove for chemo because I had friends and family who volunteered to take me.  (I had to travel about 30 minutes from where I live.)  I did have with me some money as well.

My oncologist prescribed for me five days' worth of two anti-puke drugs and three days' worth of steroids.  (I would have to look up what they were.)  I had those drugs also in my drips on chemo days.  One of the nurse practitioners told me that with what was in my system, I probably would find that I did not need to take the anti-puke drugs for probably two days.  So, I tended to take those drugs starting Wednesday night and found that I could stop Saturday or Sunday.  I never had a problem with puking; but I had days I felt a little queasy.  I started the steroids the evening I had chemo.  This I did the weeks I was doing AC. 

When I switched to Taxol, I had a few different challenges.  While it is not uncommon for patients to have a reaction the first time, I had them the last two times. My sister-in-law was my driver those two times, and she noticed my face getting redder and redder while I noticed a growing discomfort in my lower back.  So both times the infusion was stopped and I was given a bag of some other medicine (benedryl the first time and then some other similar kind the second.  When I was back to looking more normal, the taxol was resumed at a slower drip rate and the nurses kept close tabs on me.  I did all right.

Not sure if it was the taxol or the accumulation of the weeks of chemo, but these were things I dealt with -- not as badly as some patients do:  skin around my toes and edges of my feel peeling (used lotion, as I did not want the skin to crack), numbness in two of my toes on my right foot (still have that after two years), problems with deep breathing and so I paced myself so that I would not find myself needing to take a deep breath, had a few times when coughing was really a problem (onco suggested I take an allergy pill and that did wonders for me), achiness in my hips for about three days (usually four days after chemo).

With taxol, I did not have queasiness at all.  So, I would have my driver go to any one of several local fast food places to get us lunch -- my treat.  For some reason, eating that food was more appealing to me than eating what I might bring.  Taxol treatments took me later into the afternoons than did AC, and so we got hungary.  I think we did Burker King, McDonald's, Taco Bell, and Wendy's.  The food -- even the tacos from TB or the chili from W -- did not bother me.

I did not eat LOTS while I did chemo; but I did eat, even if just a little.  I can't say that there were foods I avoided, even though I had read about that.  I have learned that things like this are very individual.  I could do tacos and chili, but someone else might not.

My hair started to fall out the week I had my second infusion.  I had a friend come over and give me a buzz cut because I thought it easier to handle losing bristles as to losing clumps of hair.  I know there are others here who opted to do something like this when their hair started to fall out.  They tended to give similar reasons.

Also, there is a "Look Good Feel Better" workshop the ACS sponsors.  I decided to go and was glad I did.  I met people like me, for one thing.  I also had some helpful tips for how to wear my hairpiece.  I had a friend drive me down (35 miles) for this, as at that time I was having some breathing problems if I exerted myself. 

I think that one general thing I will say is this:  If you have friends and family who volunteer to do things for you, let them.  It not only makes them feel good, but it makes part of what you are going through a little easier.  I was fortunate in so many ways to have so many there for me, from surgery and appointments to tests to chemo/shots/blood work to radiation.

Hope this helps.  You may not have things go quite the same way for you -- that is normal, from what I learned from my experience -- but I think you will find it helpful anyhow.

e

CypressCynthia's picture
CypressCynthia
Posts: 3973
Joined: Oct 2009

I am so glad you mentioned Look Good, Feel Better. It is an awesome program and they help with scarves, wigs, makeup, etc. Definitely sign up for the next class!!!  And all that free makeup is nice too. 

 

desertgirl947's picture
desertgirl947
Posts: 431
Joined: Oct 2012

I forgot to say that it is important to drink a lot of water.  I would fill a 32-oz. container and fill glasses from that.  I would keep track of how often I filled that container each day.  If I recall, it was a good idea to re-fill that at least once.

Also, I kept two journals.  One was about my experience.  The other was where I kept tabs on things like these:

  • time I went to bed/time I got up (although about six weeks I was still sleeping in a recliner chair at the start, as it worked better for me after my surgery
  • how I slept
  • what I ate for each meal (that was to help me determine what might be causing me problems -- nothing did)
  • what I drank (including each time I re-filled my water container)
  • what pills I took and when, since the anti-puke drugs were "as needed"
  • how I felt (tired, queasy, etc.)
  • observations

That was helpful to me in that I soon figured out my post-chemo patterns, as far as how many days after chemo I experienced queasiness and and how many days after my Beulasta shot did I have achiness (usually my hips).

Hope this also helps.

e

 

WildernessGirl
Posts: 49
Joined: Apr 2014

It's been about 6 weeks since I have completed chemo (Taxotere and Cytoxan) with Neulasta shot the following day.  Chemo was 4 infusion treatments spaced 3 weeks apart.  Here's what worked for me:

1) prayers  2)  drinking lots of water  3) ginger tablets when my stomach got upset  4)  letting others help with tasks  5)  taking Claritin couple days before and couple days after Neulasta shot to help with bone pain  6)  staying as active as possible - walks, hikes, lifting weights (my oncologist cleared me doing these things.  I was very active before chemo and in really good shape).  7) naps  8) eating very very healthy - no junk food  9) notepad to keep questions/symptoms listed for meetings with oncologist  10) keeping nails short and clean  11) cutting hair short after first chemo infusion  12) getting hair shaved after second infusion  13)  Biotene toothpaste and mouthwash - brushing and swishing after all eating of food 

Hope this helps!  You will get through this - be strong!!

 

 

 

bonbondidit's picture
bonbondidit
Posts: 24
Joined: Jul 2014

This is exactly what I was looking for; tips for chemo. I haven't had my bi mast surgery yet but it's around the corner. I am sure I will have to do chemo. I have IDC .

 

Thank you for this information !!!!

Bonnie

bonbondidit's picture
bonbondidit
Posts: 24
Joined: Jul 2014

Thank you for sharing,

 

Bonnie Kiss

Puffin2014's picture
Puffin2014
Posts: 74
Joined: Jun 2014

the peppermint oil in my Berts Bees was stinging my lips. CVS Pharmacist said I should stay away from anything that said menthol, peppermint, or medicated until I'm recovered from my chemo. She suggested Nivea "A Kiss of Smoothness". It has SPF 15, aloe and shay butter and feels great, not thick and waxy but soft and soothing

emilyw85's picture
emilyw85
Posts: 28
Joined: Jun 2014

Hello Cinnamonsmile and thank you for the awesome idea, I’ll be following this thread as well, I didn’t have chemo so I don’t have any tips just few information, and thanks everybody for writing your tips!

Pixie Dust
Posts: 155
Joined: Jan 2014

Hello to all, know body wants to hear the "C" word. When I heard it I was shocked and scared. Later on after having Bilaterial surgery I felt better then knowing that the cancer was removed but I still had more ahead of me. I did have Chemo . 4 cycles 1 time every 3 weeks,a few days before chemo I had to take claratin and a few days after also, and after each treatment I received a shot called Neulesta. The chemo I did very well with because they gave me enough meds like bendryl, steroids, ativan through my IV before they started my chemo. Then after all these meds I feel asleep through almost my 5 hrs, of treatment, not bad at all. Different kind of chemo is determined on what kind and stage your Cancer is in. I was put on 2 regimes. Taxotore amd cytaxan,  ( I know that both of these are spelled wrong). My hair fell hair about three weeks  after first chemo treatment. The taxotore is what made it come out. Not all chemos will make you lose your hair. Which me losing my hair was no big deal. Beating the cancer was the 1st thing on my mind. The Neulata shot gave me alot of problems such as flu like systems with aches and pains in bones and joints. But some people it does not bother at all. My DX is stage1,grade2, ER+,PR+,HERT2-High risk recurrance. I had Bilaterial Masectomy so I did not have to have radiation. Be sure to drink plenty of water because they want this poison out of your system within 24hrs, and also afterwards. I used 1 part peroxide and 3 parts water for rinsing my mouth out and brushing teeth gums and tongue to prevent sores in my mouth. I used this a few days before starting 1st chemo treatment and did not stop till after few weeks after last treatment. I did this about 3 or 4 times aday. I used a childs soft toothbrush.  Use lip balm, no menthol, on lips at all times to keep lips from drying out. Also use a good lotion on your feet from them drying out also. Not all people can tolerate food for a couple of days after chemo so have you some Ensure on hand. All advice that people give may work for you and may not. Everyone is different. I pray that everyone going through chemo it is not bad, I was one of the lucky ones and glad that I only had to have chemo, because with me I think radition would be worse. hugs to all going through chemo.  Pixie

bonbondidit's picture
bonbondidit
Posts: 24
Joined: Jul 2014

Puffin,

 

I really appreciate your words of wisdom, I am trying to embrace the chemo before I go in for it. I am about to have my bilateral surgery anytime now, I just wish I was on the other side done already, I need some peace of mind.  I enjoyed all your info and it does help me get more focused when I see what others did, went through and problem solved regarding side effects.

 

Much appreciation,

Bonnie

RozHopkins
Posts: 469
Joined: Dec 2010

You have quite a bit to get throuh with the bilateral surgery first.  I found that more traumatic than the chemo.  Luckily........  Compared to some.

 

the cancer nurse recommendation for mouth rinse is important, I only got a few ulcers.

no pet poop pick ups or litter tray changing (mustn't get any infection)

no gardening (infection no cuts) nor cuts in the kitchen

sleep when your body says so, and it will

i thought a port worked well

when hungry, eat as much as you can and just enjoy it

when you can't eat, fruity Candy makes your mouth feel alive and takes metal taste away.  Flavored Greek Yogurts go down easy and taste good.  Soups, milk shakes etc.  get back to healthy stuff later.

dont worry about nails looking awful or falling off.  They will come back.

absolutely no dental treatment for a good while.  Get anything required beforehand.  I did as told and still got jaw bone disease from or made worse with chemo.

accept any help to do housework or cooking for you or your family, I looked at my iron with dread for a while!!!

most hair seems to come out just before second treatment, just take it all off and get some prety head wear/wig.  Lots available on line.  headcovers.com.  Buy linen for summer season.  Stay bare headed in your own home and in bed, cool and comfy.

dont drink alcohol.  One glass at the wrong time can make some violently vomit and make you feel drunk when normally wouldnt.

do not shave, no cuts allowed.  Shouldn't have to as ALL hair goes away at first but when returns wait a while

gentle teeth cleaning

lots of water

try not to drink any thing acidic

at night you can get quick movements when your hands/arms jump, it's ok, normal.  Just those chemicals reminding you they are in there doing there thing.

take short walks when you feel like it.  A little exercise at a time.  It will be an effort.  Stretch.

have trusty friends and family available to visit to have someone to off load to or to chat too.  People who are uplifting make you feel better.

Sorry so long.  My chemo was not bad honestly but the fatigue was, and went on for many, many months.  I did not fight it.  How ladies who work managed or with children at home I do not know.  They all deserve a medal in my opinion.

 

good luck with your surgery.  I take it you know the dos and donuts after bilateral.  If not please just ask.

 

XXXXXXXX 

 

 

 

bonbondidit's picture
bonbondidit
Posts: 24
Joined: Jul 2014

I have read things here and there but WANT to know about the do's and donuts to beprepared.  I have had many many surgeries in my life but never this type of thing. Please advise - wide open receptors want to know :)

 

Bonbon~

Pixie Dust
Posts: 155
Joined: Jan 2014

Bonbon, first thing I want to tell you is make sure you are going to have a Breast Surgeon or Plastic Surgeon to do your surgery. My radiaologist recommended me to a general surgeon to do my bilaterial masectomy. Biggest mistake I made in my life. Had it done on Jan. 23rd and now I am having surgery again on Aug.25 by a plastic surgeon to redo what the general surgeon did wrong. I decided not to have recontruction done because of my age and also I have just heard alot of people talk about all of the trouble that they had with it. Some do great with it and some do not. My luck I would have been in the group that did not do well. Anyway I enjoy not having to wear a bra. It feels so good. LOL. My surgery went well and I stayed over night at the hospital and came home the next day. Take your pain meds. the way you are suppose to and you will fill great. If you have a recliner it is best to sleep in it. if not not elevate yourself in bed with a few pillows where you feel comfortable laying on your back. You will have a few restrictions like not lifting your arms to higher than your chest and cannot lift anything over 10 pounds. You will be coming home with 4 drain bulbs,. 2 on each side. You will have to empty these as they fill up and they gave me a shet of paper which had on it directions and had to write down what emptied out of each bulb. Another thing that I did, I took a magic marker and wrote on each bulb left or right. It help me alot by doing this in a lot of different ways. If you are doing well, That is if all surgeons are the same, you will have 1 drain taken out on bith sides in after first week and then the next week, which will be your second week fro your surgery you will have your last 2 removed if you are draining well. This was really the worst part of the surgery to me was empting the bulbs and recording them on the paper given to me. The paper is for when you go back to your appts. the surgeon can look at your recordings and see how well you are draining. The surgery for me was not bad at all. But like I said I did not have mascectomy and reconstruction done the same day that some women do, and I myself fill like this would put me in the recliner for a month without getting up. LOL.  Are you going to have bilaterial mascetomy and reconstruction the same day or have it done later or none at all. I wish you well and you will be in my prayers, When are you having this done?     Hugs, Pixie Dust

TraciInLA's picture
TraciInLA
Posts: 1842
Joined: Jul 2009

Saw a comment above that we lose all our hair everywhere when we do chemo, so thought I'd chime in....not necessarily, even THAT is very individual!

I did 4 rounds of Taxotere/Cytoxan in 2009.  Surprisingly (at least to me), the hair in the "southern region" was the first to go, and I lost the hair on my head about 18 days after my first chemo round.

I never lost the hair on my legs or underarms.  I agree with Roz that you must NOT shave (anywhere) without first checking with your oncologist.  Mine was dead-set against my shaving my legs or underarms, and only grudgingly approved my using a ladies' electric razor.  I did not shave my head when my hair started falling out -- we used clippers set to the lowest setting, so there was no risk of nicks.

I never lost my eyelashes, and only lost my eyebrows for a couple of weeks right around Round 4.

Our bodies (even our hair folicles!) respond so differently to even the very same chemo regimen -- it's so hard to predict anything!

Traci

 

 

GlowMore's picture
GlowMore
Posts: 144
Joined: Feb 2008

Agree with Traci about the hair loss.  From everything I have been reading this year since I came back to the Boards....they don't give the kind of Chemo I had anymore maybe.   Mine was called:  FAC  and it was a drug they called  5FU....then Adriamycin & Cytoxin....  I was scheduled to have those three first and then a week later have another dose of the 5FU...but when I went for that my whites were too low already and I remember I felt like I had failed a test of some kind and fell apart that day because I couldn't get the Chemo.  Later they tried that again and finally the Oncologist just dropped the "week after" dose and I had 8 chemo drips (well...the adriamycin was that gigantic big RED TUBE PUSH) about three weeks apart....except for a few times when the whites were too low........it took about three months almost to complete chemo.  Seems to me that the hair loss began after the 2nd Round and it happened in the middle of the night... OH and after each round at about Day 10 would get a raging fever & have to take a strong antibiotic.......anyway there I was burning up with fever.......alone (except for Jesus) and I remember reaching up and pulling at my hair and it all came out in my hand....just came out by the roots....so I lay there and pulled it all out gently and dropped it into the waste basket.....crying of course....and the next morning took a shower and washed all rest off my head.   I did lose all the hair all over my body...even eye lashes......      Maybe it depends on the doseage of the chemo too?  But we ARE all individual and all have it hit us differently.    Now, after almost TWELVE Years...I can see that I was blessed with a Strong Reaction to all the drugs and maybe that helped.  But now when I read all the gals writing about it coming back....even after 14 and 20 years........I'm still scared.

bonbondidit's picture
bonbondidit
Posts: 24
Joined: Jul 2014

Hi Pixie,

 

It's official, August 5th is my surgery date.  Yes my surgeon is a Plastic surgeon specializing in veins, breast, colon and other cosmetic contouring things. I am having a bilateral with nodes removed if it's conclusive that they are involved. MRI suggested they might be. "Suspicious" was the word I believe. 

 

Off to work!!

 

I'll write more tonight plus get on chat room.

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