Chemo scares me more than the disease

Kicks

Have you been to a 'Look Good, Feel Better' class yet? If not ask the BC Navigator Ag your facility or call your local ACS for class locations/times. It is great program to learn more about skin care and makeup tips during TX. They give out bags of high end products that are donated by the manufacturers. There will be someone who is a professional there to teach the class. The biggest 'thing' I remember was being taught the points to use to draw on 'natural' brows once they leave with chemo. We were also given sample of OPi Nail Envy and it kept my nails with no problems. The sample size that was given lasted me almost through neoadjuvant and adjuvant chemo - I will not be without it yrs later though it is not cheap.

jbdayton

As far as Claritin. I took It the day before and three days after on treatment #1 and I had horrible bone pain. MO had me take 2 days before and a week after for the future cycles and I did great.

I did the ice and so glad I did, I still had mouth problems (thrush and very raw tongue) but I can't imagine how bad it would have been without it. My MO told me to get magic mouthwash to ease the mouth pain.

I know you will get through chemo. Remember the MO does not want you to suffer. If anything feels wrong be sure to call the after hours number. Do not be shy or feel like you are burdening them. I got my hand slapped for not complaining and suffering through a few side effects (the mouth issues above) they could have helped with. I was told this is their job to help you get through treatment as comfortable as possible.

Keep us updated and go kill those cancer cells.

lbrewer

lots of women did cold caps with ACT Because ACT is usually longer than TC chemo it's kinda pricey. But I did it and am glad I did.

AnewBeginning

jbdayton

Sorry you had so much bone pain and other s/e's but I guess it comes with the territory? I have so much to look forward to...LOL

Hmmm, I thought the ice was a "sure thing"......no such luck. LOL I guess I have to laugh, and maybe I will get lucky. I guess I should just think about beating this BEAST!!!

(((hugs)))

AnewBeginning

IBrewer

Losing my hair is the least. I dont think I could sit with anything cold on my head, I'm a cold baby!

(((hugs)))

lcm123

AnewBeginning, I was afraid of doing chemo, too, at first. But, like some others here, I wanted to be sure I did all I could. Mine was ER-, PR-, HER2+, like yours. And, it was my second go around, too, having DCIS in 2012. I did have lots of side effects, but none were unmanageable or debilitating. The fatigue has hung on with me the longest, but I am told I need to get way more active to see an improvement in that. So, maybe having a vegetable garden, full of organic tomatoes, peppers and other beautiful things will help me to get out there and do something.

They told me to use a kid's toothpaste, since the adult stuff burned my tongue. I usually sipped on ice water or iced juice during treatment, so maybe that's why I didn't get mouth sores.

The infusion nurses told me that Perjeta and Herceptin were a great combination. It shrunk mine over 90% before surgery.

Good luck to you

AnewBeginning

Kicks

The class sounds great, I will look into it. I have never met a BC navigator at my facility but will check it out. As for my eyebrows I dont have to worry about them because mine have been tatooed for many years. Sounds like you're done with TX?

Best of luck!

Meow13

I wish you all the best. I find benadryl good for sleeping and sinus issues.

Kicks

I am 'done with TX'. Actually a bit more than 5 yrs ago other than Femara/letrozolewhich will be 'forever'.

The BC Navigator was very 'out there'. It was unusual if she didn't stop and 'chat' for a minute or two before I got called back for Chemo. When I was doing rads she always stopped by 2 or 3 times a week while I was waiting to go back. She still calls me occasionally. She gave me a really nice wig but it really wasn't me - so I took it to the Class and there was a lady there who it was fantastic for so it was passed on. The hairdresser who was doing the class had gotten a bunch of wigs from the manufacture and one she thought she'd never find the right person for - she did - me.

Claire_in_Seattle

I did cheap and fun with wigs. Both identical except that one had red streaks in it. The great news is that I have the pros cut my hair now and it was fun upgrading my look on the other end.

I look at chemo as a not fun time, but hardly the end of the world either. Neulasta was a life saver. I took very few other meds other than tylenol and 2 days of decadron. Not sure what else they gave me during the infusion. I did have them cut the benadryl back once I knew I was fine with Taxol.

I drank a lot of water with AC, and kept a bottle with me at all times. Unfortunately, I drowned my phone, so had to do an upgrade.

As for activities, I did everything I normally do, but dialed things down. Fortunately, I was able to exercise. I realize that I was unusual in this respect but it really made the recovery much easier on the other end.

Attaching a picture of me between infusions 5 and 6 of AC (yes, I did 6 not 4). I am holding the bicycle.

Good luck! - Claire

 

ruthbru

I didn't have any bone pain with Neulasta. Everyone is different & maybe you will be okay with it too. Yes, for sure do the Look Good, Feel Better class. It was awesome.

Some tips I can think of for chemo are:

* get some Biotene toothpaste and mouthwash (I believe they have a soothing gel too), that is what my dentist recommended and it really worked for me....I liked the mouthwash so much that I still use it.

* Dove soap is the most gentle soap.....I liked it so much that I still use it too

* keep your fingernails AND your toenails polished...seems to help with nail issues

* This is what my hairdresser told me to do & my hair came back really nice. Buy Nioxin shampoo, conditioner and scalp treatment for chemically treated hair (because your hair is being chemically treated from the inside out). Start using it now and use it throughout treatment; even when you don't have hair, wash your scalp as often as you would if you did. Once you are done with chemo use Nioxin for untreated hair until your hair comes back how you like it, then you can switch back to your regular shampoo.

* drink tons of water before, during and after your AC infusions

* if you can keep moving, go for walks...whatever; I think that help with bone pain, other aches and makes you feel better mentally too

* I took a prescription sleeping pill during treatment because I absolutely could not sleep otherwise....it really was a lifesaver for me.....

 

AnewBeginning

Claire

You are amazing! I hope I can get through this with little side effects. Im not very active as far as exercise and hate drinking water but will load up on cases of it and gatorade. I wonder why different people get different side effects. Im trying to build myself up now as I only weigh 99 lbs and I think thats why Im scared of this.

Sorry about your phone!

AnewBeginning

Ruthbru

I have the Biotine on my list of things to have ready. As for polish on the nails does it matter if it is light or dark in color? I usually use light but I read somewhere that it should be dark. Not sure where I saw that. Will keep the Nioxin in mind. My MO gave me a rx for Adivan and told me that should help me sleep. I am not a good sleeper anyway lately so I hope that works. I am so thankful for this wonderful group of supportive women.

(((hugs)))

AnewBeginning

Meow

Thanks for the good wishes. Benadryl doesnt help me sleep at all. MO gave me Adivan and will try it. I hate having to takes so many drugs along with the toxic chemo.

(((hugs)))

AnewBeginning

Kaybe

I will try everything to lessen s/e. Drinking water will be my biggest problem because I hate water but of course will force myself.

Stocking up on gatorade too!

(((hugs)))

ruthbru

I don't think it matters if the polish is light or dark. I just noticed that I wore polish on my fingernails all the time and they came out fine but my unpolished toenails got kind of creepy, whereas my cousin, who always polished her toenails, but never her fingernails, came out of chemo with good toenails & bad fingernails.....so it is my own unscientific deduction.

Most people actually gain weight during chemo, not lose. I think it's because people are usually less active and more likely to be eating comfort food and/or have friends who are bringing them over big meals. I didn't gain or lose....mostly because chocolate tasted like CHALK, so there went my favorite comfort food right off the bat! (It tastes fine again now, thank goodness!)

AnewBeginning

lcm

Yes we are similar in dx's but in 2011 surgery 2012 along with my DCIS I had a tiny microinvasion. Sorry to hear you had alot of s/e but glad you are doing well. The vegetable garden sounds great! I have to find a way to get more active besides cleaning the house.

90% is great ,lets shoot for 100!

(((hugs)))

AnewBeginning

Ruthbru

Will surely keep both finger and toenail covered! Hate the thought of not being able to "taste" my favorite foods though but I've heard that alot. Dark chocolate is my everynight favorite from Trader Joes so I'm hoping I can still enjoy that. As for weight gain I've never been able to gain weight. Normal weight for me was always 114 but for the past few years I bounce up and down between 99 and 106. I make a fruit and spinach shake in my NutriBullet with a bottle of ensure but gain a pound or two very slowly. Have a great day!

(((hugs)))

Kicks

Just remembered something else I drank a lot of while on Chemo - V8 juice to get veggies. Now there are a lot of V8 flavors that do have veggies and fruits in them but do not taste like the original V8.

I also ate frozen jello. I have always liked frozen jello and it does give fluid and if worried about loosing weight, it helps. Part of why I are frozen jello was that I lost all sense of taste and appetite during Chemo - just could not taste anything or ever got hungery/thought about eating. The frozen jello gave texture that I did feel. To make frozen jello is real easy - just make it and then freeze it. I like it best just before it freezes solid as when solid, it's almost as hard as ice. If you make it ahead and freeze it solid, I used the real small ice cube trays and then when I'd eat them pop them out a few minutes before eating and they would have thawed enough to be easy to eat but still have the texture. Frozen of not - there is still fluid/liquid in it. Also in popsicles or frozen fruit bars.

I also kept hard boiled eggs in the 'frig for the protein in them.

I did not use nail polish - for some bizarre reason - nail polish (cheap or expensive) will not stay on my nails. It peels off in sheets a couple of hours after putting it on. The OPI Nail Envy sample I was given surprised the heck out of me - it stayed on. It is a nail hardener/strengthener that is not cheap (about $30 a bottle) but one lasts me close to a yr. It can be gotten at good salons. The only problem I had with my nails during/after Chemo was I did get a black/bruised area on one big toe but it was from a bruise I got driving a Mud Bog.

Just my thoughts and what worked for me.

SpecialK

anew -you don't have to just drink water, you just need fluids, even soup counts.  I am not that much of a water drinker so I mostly drank diluted fruit juices, and ate a lot of popsicles.  I usually took bottled iced tea to my infusions and used the leftover crushed ice I used to ice my mouth during the taxane portion of chemo, and did half tea/half water. Be careful of acidic foods they can cause or exacerbate mouth sores - I was having lemon in my water and got a bunch or mouth sores after chemo #1, but when  eliminated it I did not have any more.  I ate smoothies, cut up melon, soup, Cream of Wheat, cottage cheese, yogurt, etc., during the days after chemo when I was iffy, then ate a lot of red meat and other protein (eggs, spinach, chicken) in the 10 days before the next infusion in an effort to keep my hemoglobin up.   I had TCH, and painted dark polish on my nails just for the day of chemo - there is some thought that light penetration to the nail bed during taxane (Taxol or Taxotere) chemo causes lifting.  I removed the dark polish the day after chemo and painted on a clear nail hardener like Kicks mentioned (there was actually a small sample of one in a little bag I received the first day of chemo put together by the manufacturers of Taxotere) - one coat a day for seven days, then removed it and started over.  I had a limited appetite during chemo, did not eat high calorie foods, did not have anyone bringing meals,  I gained ten pounds from the steroids and fluid retention.

ruthbru

I ate a lot of mashed potatoes with cheese & lots of fruit smoothies (blended with yogurt, a fresh fruit, a frozen fruit and some juice). The V-8 juice that doesn't taste like vegetables is a great idea that I wish I would have thought of, because I couldn't stand the taste of vegetables.

SpecialK

ruthbu - OMG I forgot about mashed potatoes!  They were the best during chemo - you can also sneak in some sour cream, or even bacon if you need to get more protein.  I also had baked potatoes, they were filling - sometimes with broccoli and cheese.

SpecialK

kayb - it is definitely an individual thing - I am prone to mouth sores anyway if I eat acidic things and that pre-dated chemo. I was trying to hydrate - so I ingested more lemon than usual!  Others have used lemon and had no problems, glad you were one!

SueH58

For those of you chemo survivors, how were the side effects compared to what you expected. And, on a scale of 1-10, how bad were they.

Following an Oncotype Score of 20, I am awaiting the results of the Mammaprint test. If it comes back high risk, it's a done deal. If it's low risk, I'm feeling that perhaps I should take it anyway, since the Onco score and KI-67 = 20 are both intermediate.

Anyone else have to "decide" what to do based on intermediate scores?

Sue

ruthbru

If 10 is how awful I thought it would be, it was about 3.5......some days 3, some days 4.

I went through treatment before oncotypes were offered, but in retrospect I am glad I did it. Knowing that I did everything I could medically makes me breathe a little easier as I've gone forward.

Spookiesmom

I had some 7-8 days on A/C. Several 10 days with Taxotere. But I would do it again, all the tx, so I knew I did all I could.

AnewBeginning

Spookiesmom

Im hoping I will be saying the same in years to come. I wonder why some people get some s/e and others not so bad.

(((hugs)))

AnewBeginning

Ruthbru

I guess I wont know until the time comes. Some say you dont get s/e the first treatment....is there any truth in that? What exactly is oncotypes if you can explain.

(((hugs)))

AnewBeginning

Special K

All the foods you mentioned are my "comfort foods" and I will definately do the nail polish thing because I love my nails and remember a friends nails lifting from her chemo. So from what I understand you only need the dark color as your being infused?

Its amazing how things work! Thanks for all the great tips

(((hugs)))

AnewBeginning

Kicks

Just added the V-8 to my list of things to have in the house. All these suggestions are so helpful and the jello sounds like a good idea too. Going shopping today so I have everything in the house.

(((hugs)))