starting chemo regime (w/kids) trying to organize, worried

laprofessoressa

starting chemo regime (w/kids) trying to organize, worried

laprofessoressa

I'm 42 and will be starting chemo & herceptin (TCH) in two weeks. I have two school age kids and lots of people nearby who want to/can help me & my husband with day-to-day needs.  But I don't know what it is I will need help with and for how long.

Is there any rhyme or reason to how long I'll feel sick each 3 week cycle? I want to plan ahead for help and I don't know how. Hearing reactions to TCH in pre-menopausal women would be a wonderful too--I looked around on the site but couldn't find a good place.

lostinmo

laprofessoressa-I just wanted to say sorry your here.  Welcome though, someone will come along who has had this chemo.  How old are you kids?  The chemo effects everyone different but for me having one of my friends come and take my DS for the weekend was nice.  He enjoyed hanging out with her kids didn't have to worry about waking me.  Maybe some could have you meals made. You probably won't feel like cooking.  With my TX's I only feel really bad days 3-5 then it gets better. I'm on DD and go every 2 weeks. Don't know that I helped much.  Good luck with treatments!

SpecialK

laprof - Sorry you find yourself here - especially with young children who rely on you - that makes things more complicated.  I finished my 6 TCH a year ago.  You will find that responses vary to this chemo, and whether or not you are pre-meno does not seem to make much difference.  I would recommend accepting any and all help from anyone who offers, but personally found that with the exception of days 3-5 post-tx I did not have too much trouble.  I experienced mostly fatigue and some digestive upset (the Big D!) but it did not keep me from activities around my house - I still did everything I did before.  My DH did not take any time off work, other than to take me to chemo on tx days, which was mostly because the pre-meds can make driving inadvisable. He wanted to be available during the tx if there were any complications - which there were not.  You may find that your energy flags toward the end of tx as the cumulative nature of side effects becomes a factor.  There are many ladies on the TCH thread who worked full-time through tx, just taking odd days off here and there - as well as the day of chemo itself.  I would advise maybe making meals ahead and freezing them.  I also tried to do things in advance, like pay bills or do laundry or stock up on groceries, during the two weeks preceding the next tx so that I was not stressed about how I would feel, and whether or not I would be able to get these things done.  It allowed me to rest if I felt tired without feeling like there were things that I needed to be doing.  The TCH thread has much info about how to deal with side effects, and what people experienced.  I would recommend checking it out.  Here is a link.

http://community.breastcancer.org/forum/69/topic/578284?page=461#post_3041124

You will find ladies on there who have already completed this regimen, as well as those who are doing it currently.    Also, check out the other threads about preparing for chemo.  They have helpful suggestions.

I would definitely recommend icing your fingernails and toenails, to prevent lifting, during the Taxotere portion of your tx.  Also, if you are to receive Neulasta 24 hours after your chemo, take a regular Claritin an hour prior to the injection and at 24 hour intervals for a few days to help with bone/joint pain.  Doing both of these things may be helpful down the line at preventing side effects that make routine activity difficult.  I also took some supplements to try to mitigate neuropathy, which was effective for me.  I did all of these things with my onc's approval.  There is another thread called Taxotere Toolbox which is helpful.  Here is the link.

http://community.breastcancer.org/forum/69/topic/766964?page=2#post_2805396

If you have any specific questions, please feel free to PM me or ask them here.

laprofessoressa

Thanks for these tips and links--it's reassuring (and a little overwhelming/scary) to read!

My kids are 9 (son) and 5 (daughter)....I work full-time on an academic schedule and before cancer changed EVERYTHING, I was planning on spending the summer HOME, hanging out with them, pool, etc.....which now I know I won't really be able to do. Feeling overwhelmed over all the change still and worried about how I can still mother while I will need so much mothering myself.

rozem

i was 42 when diagnosed aswell - 2 kids 9and12

i had a different chemo combo but my advice is:

1.  you will have a distinct pattern after each chemo, your worst days, good days etc.  On your bad days do not hesitate to accept help - I found the most helpful thing was food - when ppl brought over food i was so grateful because just the smell of cooking made me sick

2.  do fun things with the kids on your "good days" - you will have them, depending on the way you react to chemo you may have more than you think you will

3.  kids are way more resilient that we give them credit for.  They will adjust to your pattern as you go through chemo.  My kids (they were older) knew when i just couldn't get off the couch and so they sat with me and watched tv - and were fine with it

LaurieInDallas

I am a single mom of a 6 & 10 year old who is about to finish a full year of TCH.  I would highly reccomend getting help from Bridge of Blessings for childcare and sending your kids to Camp Kesem.  This has been the hardest year of my life... I hope you have lots of help... right now because of my heart failure and brain damage that was caused by the herceptin that has saved my life I am not even able to cook or drive.  Would I do it again?? OH HELL YES!!!   Life is beautiful and I am grateful to get to stay here with my kids!!  I find it amazing that God has sent total strangers to my door with food support and comfort while most of  my family has avoided me like the plague and did nothing!!  Get your duckies in a row while you are able.  Find ways to get food... Schwanns, pizza delivery, meals on wheels, local food bank, whatever.  Many thanks to CLeaning for a reason also.  I would be good for a day or 2 after treatment (I had some sort of 1000 dollar pills in a bubble pack) but the 4th day I was down for the count... until about week 3 when I would get my stuff together to do it all again!  I read all kinds of books on chemo and self support... do yoga and meditation... get help from the cancer support community, livestrong and the cancer society.  I learned ginger cookies and ginger ale were my 2 best friends!  Stock up but most of all keep your chin up... assure your kids that yes people do die from cancer but I am not going to be one of those people because I REFUSE TO DIE!!! Make a will without them knowing anyway.... never hurts to be prepared.  If I can do this you can too!!  I was an angry whimp before my chemo, now I forgive others and live withhout anger... I am blessed to have each new day and so grateful!!!  Pack a backpack with your port creme and thank you notes to take to chemo... celebrate your hair loss as you know you are losing your cancer too!!  collect hats and scarves and funky bandanas before you need them!  Dont let anyone discourage you.  My kids have super hero capes they wear as they help me.  They are my heros and I am theirs!!  Much love and best wishes.

camillegal

Laurie has some great ideas---My niece who is in her 40's with 3 kids had a church group who cooked meals for her family, a cleaning lady--she also called thec cancer societ and checked on what they offer for helpin with the kids which was a blessing. I myself alot of the times needed rides for app/ts and they always came thru for me too. There is help out there sometimes u ave to investigate and if anyone offers help accept it with love and thanks.

And one more little thing--when u wear u'r hats and scarves wear sparkly earrings it brightens u and everyone else up.  Good Luck.

camillegal

Laurie has some great ideas---My niece who is in her 40's with 3 kids had a church group who cooked meals for her family, a cleaning lady--she also called thec cancer societ and checked on what they offer for helpin with the kids which was a blessing. I myself alot of the times needed rides for app/ts and they always came thru for me too. There is help out there sometimes u ave to investigate and if anyone offers help accept it with love and thanks.

And one more little thing--when u wear u'r hats and scarves wear sparkly earrings it brightens u and everyone else up.  Good Luck.

christina0001

I just finished TCH (will continue with the H) and am also pre-menopausal (I'm 33). My "hard" days were days four through seven each cycle, although I am on day 9 from final TCH #6 and my stomach issues are lingering. My symptoms were mostly stomach upset (pain, diarrhea) and fatigue. I've had plenty of other symptoms but nothing that had a serious impact on me. If your husband or friends are willing to handle meal prep for your family, and maybe some light housework, that may be all you need. I know on those days I just did not feel like doing much of anything. Did not really want to eat anything heavy, either. But the kids and hubby need to eat of course. I don't have kids...the weekend before chemo I would clean my house well, do all laundry, do big grocery shopping, and just prepare to hunker down. It may be helpful if friends/family were willing to take the kids out of the house on your "hard" days, just so you aren't tempted to overdo it at much.

There's no way to know how you will react. Some people do better taking meds for SEs beforehand. This did not work for me, as I was treating SEs I never really got and then had to deal with SEs from the SE meds. My advice is to have SE meds on hand and take them as soon as you need them; not any sooner or later. Stay hydrated as much as possible. Rest when you are able. Eat healthfully, but don't stress over it. I definitely indulged in comfort foods at times and I think it really helped me get through this. Expect the unexpected. In some ways each treatment cycle was similar, yet in other ways, each cycle was different. I had skin issues after the first couple treatments, and the last treatment, but not in between. I had mild mouth sores for all of 48 hours after...oh I think it was cycle 3 or 4,and never again. Nail issues started after cycle 3 or 4, but never really got bad until after this last TCH. The nails are hanging in there though. Only had bone pain for 1-2 days, a few days after my first neulasta shot; all the rest were bone pain free. Had two cycles (#s four and five) where I had an awful, unbearable taste in my mouth; had this SE other cycles including this last one but much more tolerable. I normally love water but TCH has made it awful to drink. It has taken a lot of experimentation to find fluids that I can tolerate. Have had very occasional nausea; as soon as I have it I take a med for it and it goes away. I've had stomach pain and that took a few cycles to work out what rx  meds helped the most. I've had hot flashes that have gotten progressively worse after each treatment, but they are bearable. The last few cycles, they did keep me awake at night at times. Libido decreased. Have had unpleasant vaginal dryness. I've been using KY LiquiBeads, which helps but doesn't cure it. Be sure to give your onc very honest feedback about how you are feeling, every little thing. There are so many tricks, tips and meds to try to help with all SEs. Lots of good advice here too. I would be lost without this website.

Good luck to you. You can do this! It has been very hard, but it's not nearly as awful as I thought it would be, like in the movies.

laprofessoressa

Thank you all for these tips and support ... 3 days into my first round and I'm trying to understand what my "routine" will be

orange1

I was pre-meno when I did TCH.  My biggest issue: diarrhea, lots of it.  My advice: don't leave home w/o lomotil.  I kept it everywhere - car, desk at work, etc.  I also had colace because all those meds cause constipation too.

As far as getting help - you probably won't need much at first.  Towards the end you will probably be fatigued.  You may want to accept help from others for shopping, meal prep, etc.

Best of luck with treatment.