Advice for my wife who just started chemo?

GainesvilleSpouse

My wife, age 70 and in good health (but asthmatic - well-controlled), was diagnosed on May 1st and had a lumpectomy on May 14th which removed a 1.2 cm. tumor just under her nipple. The surgeon found clear margins and clear sentinel nodes. He said he felt 99% sure he got it all. He is very well-regarded and a very nice guy. BUT the pathology report showed estrogen at 93% and progesterone at 91% and Ki67 at 92% - and HER2 positive. A family member is an oncological P.A.. She recommended being aggressive with Herceptin and Taxotere and Carboplatin. When we met our oncologist, she recommended exactly the same regimen. So my wife had her first Herceptin infusion (port) last Monday and Taxotere and Carboplatin on Tuesday and Neulasta on Wed. Went as smoothly as could be expected. She felt pretty much okay until yesterday. Felt "crappy" - and seemed close to miserable - much of the day. Mostly read and slept. Mild nausea, some diarrhea, some achiness - including some in the big toe in the evening. Took Phenergan at bedtime and slept okay. This morning she is so-so. Feeling fairly normal.



Long info buildup to our question: yesterday was no fun and she has 18 weeks ahead of chemo - followed by radiation. Do side effects come and go during the chemo cycles? Basically, what can she expect to have to deal with in the coming days/weeks/months. Any feedback from women who have gone through a similar regimen would be greatly appreciated.

Anonymous

Best medication for nausea seems to be EMEND.  Check with your doctor.  It was given WITH chemotherapy when I got it.

I had terrible problem with diarrhea, and doc suggested IMMODIUM.  Worked well. AGAIN, always, always check with your doctor before doing, listening to ANYTHING anyone suggests.  We ar all SO DIFFERENT, and best always to check with your own doctor.

If nausea is mild, often fresh ginger chopped up in water eto make TEA will help.  Or froom temperature no fizzy ginger ale.  As for the fatigue, no advice, accept REST, REST, REST.  Exercise helps some people, but I couldn't do it until after chemotherapy.  Expect different with Herceptin.  Some women have had pain with Neulasta, I didn't.  Recommendation for that has been take CLARITAN ( NOT Claritan 2) - again, this is gonna sound like a broken record, pleae check anything your wife does first with her doctor.

GainesvilleSpouse

Thank you SunflowersMA and kayb for your thoughts and suggestions. Since I posted, we went out for lunch with friends and shopped at Publix. What a difference from yesterday when she barely felt like getting off the couch. Living normally, as much as she can, seems beneficial both physically and psychically. "Normally" includes teasing her, when she was looking at shampoos or conditioners, that maybe she should skip the large economy size. Yes, she laughed.

jancie

So nice to see that your wife still has a sense or humor - that is so going to help during this journey.

Be patient is the main suggestion I have for you.  Everyone reacts different to chemo - I remember just being so very tired and I slept a lot.  My house did not get cleaned very often.  My dh had to fix dinner for himself and his son on many occassions.  The best thing my dh did for me was to be understanding and he didn't put any pressure on me to do anything at all.

Your wife will have good days and bad days.

jancie

I really need some more coffee!  You were asking for advice for your wife and here I am giving advice for YOU.

Sunflowers mentioned Emend and yes...that is the best thing for nausea.  My oncologist gave me ritalin for fatigue but it didn't really help.  I was taking Lortab for joint pain.

Racy

Hi GainesvilleSpouse. Your wife will probably find the first 7-10 days after each chemo are the hardest, then she should start to feel better until the next cycle.



There is a topic here called 'shopping list for chemo' which would be useful for you to have a look at. Also, there are heaps of tips in the monthly chemo group topics.



You will find this site is an enormous source of information, support and friendship as you go through cancer.



Best to you and your wife. Keep in touch ,

sciencegal

Hi Gainesvillespouse,

Good for you for looking after your wife and reaching out to us for input. My hubby was great through it all, and pampered me a lot, but would never think to come to this site! He just talked to his buds and family abut how stressed and scared he was. I think it is just as hard on you who love us, as it is for the patient going through it.



As you have already realized, chemo is a roller coaster ride. This whole journey is. There are bad days and great days. Treasure each. Treat her to what she wants, this is no time to restrict fun. New books and movie rentals definitely help. My husband and I came through this stronger in the end.



I am so glad she started the herceptin right away. i did the same and it shrank my tumor to nothing (TCH regimen), they could only find a dead nest of cells in the tissue removed at surgery, and all my lymph nodes were clean. I sure wish her the same level of success!!!



We will be rooting for you both.

GainesvilleSpouse

Exactly the sort of feedback I was hoping we would get. My wife has read them all. Sunflower's advice on ginger and on defizzed ginger ale were suggestions she had also heard from our family member (the oncological P.A.).

We will have to check out the chemo shopping list Racy mentioned. Our oncologist "promised" she will lose her hair so we went by a shop that specializes in head garb for chemo patients. Found some possible choices (my wife is wary about a wig, but open to the possibility). She rarely wears a hat but looks really great in them. At least the wide brimmed kind. But I'm not sure they work on a shorn head.

badger

Gainesville, I have that thread saved as a favorite and will bump it up 4u right now.

Best wishes to you both!  ♥

Melrosemelrose

GainsvilleSpouse-  So wonderful that you have come here and asked for some support and help for your wife and you to get through her time in chemoland.  You have found great place for support and information and where there are many who have travelled this way.

Here is the link for the BCO Chemo Threads for Newbies where you will find the links to several chemo discussion threads that are very helpful and include tips, more tips, head coverings, wigs, port placement, etc

http://community.breastcancer.org/forum/69/topic/785189?page=1#idx_1

If you are wanting to know more info about her chemo, you can go to the main section of BCO.org and find info her type of chemo.  I also used chemocare.com as another source of information about the side effects of each type of chemo.  This website was founded by Scott Hamilton, the one time Olympic ice skater who is a cancer survivor.  Here is the link:  http://chemocare.com/. 

One of the things that I found very helpful was to keep a food diary and medicine diary.  The food diary helped me figure out what to eat and what worked best for me during time between chemo rounds.  The medicine diary was to help me keep track of what anti-nausea meds when and how much.  I amde sure that I took my anti-nausea meds on schedule and that the same times with plenty of water and also with food.  The reason for the taking them with the food is that some of the antinausea drugs can cause nausea if taken on an empty stomach.  I also noted on a calendar how I felt after each chemo so I could keep track of my side effects and when I felt not so great.

As for eating, I tried to eat 5-6 small meals.  That way, I always had something in my tummy which made me less likely to experience nausea.  I also had two books to help me figure out what to eat and probably can be found on line at Amazon or Barnes & Noble

Eating Well Through Cancer by Holly Clegg and Gerald Miletello MD ( has tips, how to deal with side effects, recipes, shopping lists, menus)

The Cancer Fighting Kitchen by Rebecca Katz- ( tips and great pictures and recipes)

As for the Neulasta shot, I had those beginning with my 3rd round of chemo.  I had the shot administered in my tummy since there was a little fat and not as painful as it would have been if I had received it in my arm.  I also took regular 24 hour Claritin the morning that I would receive my shot in the afternoon.  I continued to take it for 7 days which is the protocal for the current on going clinical trial on the taking of Claritin to help the bone pain from the Neulasta.  Just remember that your wife's type of chemo may also cause muscle aches and joint pains so one cannot always assume that the Neulasta is the culprit for aches and pains. 

As for the hair, this is a very personal thing.  One does know that the hair will most likely go but until it actually begins to happen, the reality of the event can be upsetting.  It is the most outward evidence to others that one is not well.  We all have our hair stories here and we each dealt with the change.  I wore bandanas, Buffs, baseball caps, and straw hats purchased from Target.  I had a fee wig that I received through the American Cancer Society's Look Good Feel Good program which I decided not to wear because it was too hot.  You may want to check to see if there is an upcoming program for your wife to attend.  They also have a makeup session where one receives a free bag of makeup and can learn ways to tie head scarves.

As the two of you travel through chemoland together, please continue to come back here for support and help.  Both of you are not alone and there are plenty of wonderful people here ready to help you.  Wishing you the best!!!

bobogirl

Hello Gainesville Spouse:

How is your wife?  And how are you doing?  I'm not sure if you are in Gainesville FL, but if you are, I am very near by.  Will you let me know if you need anything?  Or could I bring your wife a little treat?

I'm a teacher -- we have two seven-year-olds.  I sure hope your wife is doing well.  Thinking of you both. 

{{{{hugs}}}}

GainesvilleSpouse

Again, thank you everyone! We need some time to digest what we have read. And to check out the links etc that Melrose supplied. My wife has read these most recent posts, but right now she is feeling pretty good and immersed in a junk novel. Escape! So, if her tummy continues to permit, she will probably stay with the book until bedtime and will put off following up on suggestions until tomorrow.

GainesvilleSpouse

Since my last post it has been a bit of a rollercoaster, but Mondat and yesterday were "okay" - mostly just mild queasiness - and today she woke up feeling pretty normal. We are still trying to figure things out. Will this be her normal cycle after chemo - several rollercoaster days, some miserable - followed by a good spell? Or to what extent did Phenergan relieve her GI discomfort and resultant nausea? Time will tell. But far more encouraging than the daunting prospect of four and a half months of non-stop bad days. Fingers crossed.

sciencegal

Hi Gainesville spouse, thanks for checking in! I had wondered how you are both doing.



I tried three anti-nausea drugs and finally found one that really worked for me (compazine) - if I stayed on it continually for two weeks after chemo- 3 pills a day, I had zero nausea. You cant miss a dose of these pills, whatever she is taking, that is important to know.



If hers isnt working well you can ask for a different one. There is a decent assortment of different meds.



I usually had two achey exhausted weeks, then one good one, getting energy back, then they would hit me again after week three. Roller coaster- for sure.



But it does go by faster than you think and at least for me it worked- right now I am a NED (no evidence of disease). So chemo was sure worth it.



I certainly wish the same for your wife!

badger

hi Gainesville, thanks for checking in.  I've got my fingers crossed, too!

I had 6 infusions of TC every three weeks on a Tuesday.  Got zofran anti-nausea as a pre-med.  Had compazine pills that I took every six hours (4 pm, 10 pm, 4 am, and 10 am) for four days: Tues when I got home thru Fri night.  Figured if I stopped Sat. morning, I'd have the weekend to veg out and recover. 

If memory serves, by Sun. I had turned the corner to feeling better.  Felt OK the next week and felt good the week after that.  By week 3, it was time for another infusion.  Hang in there!  ♥

GainesvilleSpouse

Thank you sciencegal and badger for your support and info. Today was another good day. Not pre-chemo normal, of course, but good. She slept later than usual (good!) and felt pretty normal in late morning and while we went out to lunch and ran an errand. Did a few chores around the house then rested, read and napped for 2-3 hours this afternoon. That is the difference from pre-chemo. Never used to nap. Still a good day.

bobogirl

Good report!  So glad it is a relative normal, and peaceful.  Hugs to you both.

AmyQ

I've had 4 of 6 chemo with my next on Tuesday July 2nd.  I started keeping a journal of how I'm feeling on chemo day, then day 1 post chemo, day 2 post chemo etc. It's been very helpful for me to review the ups and downs.  For the most part I feel like garbage on day 3 post chemo but it generally only lasts one day then I start improving again until the next chemo.  However after my 4th infusion I felt like garbage for 4 days starting on day 3 post. This was a new development and rather disheartening. The good news was my PET CT showed no active cancer soooo makes all the crummy days worthwhile. At least I know the treatments are working.  

I've read the side-effects are cumulative but I don't know if that's the case for everyone.  I just know that each of us experience different things at different times.  The most important for you and your wife is to help her eat and to sleep when she needs it.  Another bit of advice someone gave me is try to get out for a walk everyday, even if it she doesn't feel like it. Exercise helps to aleviate symptoms and keeps her muscles strong.  

Lastly, when my bones hurt from the Neulasta or Xgeva shots, I soak in a warm bubble bath for over an hour. I'll read a book or just snooze and it does a world of good.  Much luck to you both.  I will be thinking of you.

lbrewer

Hats do fir differently but you can buy special bands that fit inside witch velcro to the hat inside and take up some slack.  http://www.tlcdirect.org/Headbands-Cap-Liners-And-Sleep-Caps-for-Women-Cancer-and-Chemo-Patients-American-Cancer-Society-TLC-Direct

is the link for the hat sizers.  I bought more peel and stick velcro so I could swap them with more hats.

And the Emend is wonderful.  But shop around...it can be expensive.  The hospital sold it for $100  less than Walgreens.

Stopcrying

The best advice that I can give is to just try to go with the flow. One thing I've discovered is that when I think I've gotten cancer and chemo figured out, they prove me wrong. One cycle I'm in the hospital because I haven't pooped in a week and can barely function, the next time I've got diarrhea constantly. I can't chew gum without running to the bathroom. My bones hurt from the neulasta injections but that does go away and rubbing her legs will help a lot. The week after chemo it's really hard to eat or drink anything because it all just tastes like poison. Apparently that nasty chemo kills off your taste buds as well. Smoothies work well for that. When she can't sleep, Benadryl is the easiest thing that doesn't interfere with any meds. The one thing my husband majorly screwed up on..... Tell her how you feel and if you're scared tell her. She's still the same person you married and always acting like everything is fine could make her feel like you don't care.

Stopcrying

And as for the hats.... I was nuts about buying hats and wigs before I lost my hair. But a week before I started chemo, I shaved my head. I figured the cancer had gotten my boobs, it wasn't deciding when to get my hair. My daughters had me go to the mall with them that day, to get it over with. The funny thing was... No one stared. I've never worn a hat or wig and feel fine with it. You get smiles from people. They know why your bald and give you thumbs up on your progress. Do get a cotton sleep hat, her head will get cold at night.