Starting Chemo April 2016

Dear Numb and other April 16 chemo group,

Greetings from the April 15 women! You may find this thread and group of people your most important, long-term resource for chemo and life beyond.

You can do this--and we will drop in to cheer you on and answer questions if we can.

I didn't have a very hard time of chemo. It was time-consuming and took a lot of tracking but wasn't too bad. I didn't have trouble tolerating the treatment.

Hi Numb, I hope that others will join you here soon. These monthly groups can be very helpful (mine was May 2015). Count me in as someone who also tolerated chemo well. Fun it wasn't, but it was manageable. You'll do fine, and there is a lot of support here!

It feels good to have a place to come where others "get it". I found that every SE I had, someone else here had as well, and that is comforting. You can find lots of tips on how to deal with various SE's..... for me that was such a help!

Hi, Numb. You will see some threads that are devoted to doing well (with surgery, chemo, radiation, hormone therapy, reconstruction...) but as you say, many people seek out a site, or post, because something is difficult or uncomfortable. Like therapy--people don't start therapy to talk about how well everything's going, so therapists can get a distorted picture of their community over time if they forget that most people aren't coming to therapy.

Neither my mother nor sister has used this site; they did their treatment and don't want to talk about it. My sister asked me questions since I'd already been through it, and she mostly did what her docs told her to.

Hello ladies! My name is Gwen and I was an avid user here in 2012 and 2013 when I was going through surgery, chemo and radiation. I was thinking about it this morning and felt inclined to visit the board and go to the next chemo group which is you ladies. Yesterday I returned from a trip to Hong Kong and Vietnam. I went with a friend and we visited another friend. My travel friend picked up a cold a few days before we left and is now home sick and wiped out. I however feel fantastic. I just realized I haven't been sick with a cold or flu once since going through treatment. Maybe just maybe that while chemo lowersyour immunity it also strengthens your body so that by the time you are done you are this little germ fighting power house! I like to think it's like I got an oil change for the body! Anyway I want you all to know that the vast majority of you will absolutely get through this and come out physically, mentally, and spiritually stronger. While you are in the throws of treatment do a couple things to lift your spirits. Plan a trip for after treatment is over. Plan a weekend get away during treatment or in between chemo and radiation if that's on the schedule. Go out to lunch with your friend that you love but don't see enough. After the first few minutes answering her questions about how you are doing you will move on to fun topics, gossip, whatever, and you'll leave lunch feeling empowered. Yeah this is a challenging time but in the scheme of life it's just one of those damn times when life presents a hiccup. I worked all through chemo and radiation without any problems. I think I took a sick day the Monday after my final chemo but that was about it. I cut my hair into a cute pixie around the time of my first treatment. Sure enough about three weeks later it started falling out so I had my husband shave my head and I rocked an adorable wig with the most beautiful highlights I ever had! Getting ready in the morning took so little time not having to do my hair! From the time I was diagnosed until my last treatment day was 9 months. I sort of looked at the process like a pregnancy. It has its ups and downs but in the end it's all worth it. And like a pregnancy you tend to forget any of the difficulties and simply give thanks to this little miracle you hold. The difference is this little miracle is not a baby but healthy you! You got this! All my best to each of you, FriendGwen

Numb, this site is better than many for a more balanced picture of the whole thing. I agree, though, that a person can frighten herself terribly, so it's good to ask questions.

Numb - first time around I breezed yes breezed through AC & T. No puking. Little neuropothy (sp?) no sores or missing fingernails. nada. I had so much nervous energy I painted the bathroom, front porch and stained the patio. Built two flower beds with small pavers. Walked. Watched Planet Earth series on DVDs husband got for me. Sewed (who me? yes me sewed!)

DO: Avoid crowds, (I am planning on avoiding people and going fishing with my husband) get exercise, get a hobby if you don't have one to do during idle time - helps with nerves and keeps your mind from wandering. Ask for nausea meds and oxy or whatever they prescribe for neuropathy so it doesn't slow your exercise down even if just walking. Also get lots of those clorox wipes and you or someone in your house wipe down door handles, appliances, remotes and phones daily.

Hair loss sucks but it doesn't hurt.

Seriously, I am dreading another round only because I don't think there is any way I can be that lucky again - though this will be short - just 4 of Taxotere or 6 of Xeloda. Pick your poison... Will know March 31. We can do this!

April 2016 gals, Sorry you find yourself here, but I encourage you all to stop by this forum often. You will find a great group of women to help you through the bad days and celebrate the good days. They will understand like no one else in the world can, because you're going through it together! I started the April 2015 group. I had an advantage (can you call it that???) in that it was my second time going through, so I knew the tips and tricks that worked for me. As a result of that (and some luck), I had a relatively easy time with chemo, even doing a half marathon partway through (notice I said doing one…not running one…I ran half and walked half, which is how I trained. It gave me a focus besides just chemo).

Here are some thing that helped me:

1.Be sure to clearly communicate to the oncologist. They have tons of things to help with about every side effect. You just need to let them know what is and is not working. They can't help you if they don't know.

2.Do what works to deal with the digestive issues. They gave meds in my premed infusion which lasted for 3 days and worked. With AC, my oncologist told me to take Zofran every 8 hours for 5 days and not to get behind. I set my phone alarm. It worked well. No vomiting and very little nausea. I also had meds on hand for both diarrhea and constipation since people seem to trend one way or the other. I had heartburn too and Zantac helped a lot. My oncologist warned me that AC and the anti nausea meds cause severe constipation. He told me to stay ahead of it. He was right and I am SOOOO glad he warned me. The first round I just took stool softeners…not enough! All the others I took the max dose on the stool softeners, ate prunes, ate food which normally cause me diarrhea and occasionally took another laxative. I had no further problems.

3.Eat what tastes good. Some chemo alters taste. Mine did, and everything tasted like pond water for a couple days. I ate what I could. Kind of like pregnancy…eat what you can when you can. Luckily for me, fruits and veggies tasted good.

4.Hydrate, hydrate, hydrate……drink what you can…however you can…it is one of the best way to help clear the chemo out and help you feel better. It varied round to round what I would drink. Decaf tea, ice water, lemon water, slushies, Gatorade, Lifewater, soup broth, smoothies, watermelon, etc. I took Gatorades, poured them into other containers and froze them for a while…instant slushie.

5.***This was key*** Keep a journal. I wrote a sentence or 2 on my iPad each day. I just labeled it Day 1, date, and wrote a sentence or 2 about what I felt each day as far as symptoms. This really helped when I went to my appointments. It also really helped round to round. The symptoms are really very similar each round, but you get better at figuring out how to manage them. You think you'll remember, but I would have something and think I'd never had it before and look back and see sure enough…day 3 was the same last time. Just like pregnancy, you block out the worst parts very quickly. It really did help also being able to look back and know that even though I may have felt crappy one day, I knew that in 2 days I would feel better and be back to normal. The only symptom that is cumulative is fatigue, which is mostly because of blood counts taking a bigger hit each time.

6.If you get Neulasta, about 50% of people have no side effects. About 50% have crushing bone pain. My MO had me take Claritan to prevent the pain and it worked for me.

7.People want to help. They really do. Let someone set up a meal train for you. If someone says "what can I do?" …give them a task…about a half hour task…come and vacuum my main floor,…come and help me fold a load or 2 of laundry…keep the task small…you will appreciate the short visit, you will appreciate help with the housework, and your friend will feel great for helping. I also had an "on call" person for meals. I had one person who said if I was ever admitted, she would cook a meal for us. I did this after my meal train filled up; I just used the meal train for a couple days the first week after each chemo. When I was admitted during TC chemo because my counts fell and I spiked a temp, it was so nice to have that go-to person for a meal for my family. I am sure you have helped people in situations like you are in and you will have years to afterwards. People want to help you. It is hard to accept help, but it really will help you focus on getting healthy and taking care of your family…and that is what is important now. I had one round where I felt really good and called the person on the meal train and told her she did not need to bring a meal. She said, "Karen, you don't get it. I WANT to bring your family a meal…whether you need it or not." I enjoyed her meal, and took her statement to heart.

8.Studies that randomize people into exercise and non exercise groups have proven that exercise helps decrease side effects. Walking or running everyday with my trusty tunes playing was a sanity saver for me. Even on my crappiest days, walking helped me a lot…physically and mentally. On good days, I went for long walks. On days when I was more tired the walks were much shorter. Anything is better than nothing. Do what you like. Just do something if you are able.

9.Once your nose hairs fall out, your nose will run more (annoying), so keep tissues in pockets and in the car too

10.To prevent mouth sores with AC... Chew ice and suck on popsicles for 5 minutes before, all during, and 5-10 minutes after the "A" push.

11.Keep your oncologist up to date on how you are feeling. Do NOT let him/her minimize things. If something is not helping, ask for something different. Luckily now, there are ways to combat almost everything. My MO first time around minimized everything which landed me in the hospital. He was NOT my MO for very long. My second MO is fabulous!!!!!!!

12.In about a month you'll have hot flashes thanks to chemopause. Dress in layers and always keep a bottle of ICE water with you. It'll break the hot flash quickly.

PM me anytime with any questions. I've done both AC+T and TC. You also can pop onto the April 2015 board anytime to ask us questions. I know several others will pop in to give tips and encouragement as well. We're a very close group and still check back often.

You CAN do this!!!!!!!

Karen