Just had second chemo

You aren't alone.  Cancer sucks, chemo sucks, the side effects suck, taking all those meds sucks... you may feel like this will never get better and never end.  I know I often felt that way even though in my head I knew that wasn't true.  So even if you can't believe that things will get better, please know there's at least one person (and I'm sure a lot of others) who knows it will. 

First, I'm sorry this is long... I have a lot I want to share... read if you feel like it, but if you don't, that's OK too.

Practical matters: 

1.  Keep your dr. and his staff informed.  DON'T downplay your symptoms! As women we're so used to being the strong ones that we tend to understate our own "stuff."  This is not the time to do that.  Let them know how you're feeling, and if something isn't working, they should be able to help you find something else that will. There's no way you can know what's "normal" in all this, so let them know about your problems.  I used to feel bad about calling once or twice a week with issues, until the nurses said they have patients who call at least once or twice a DAY,  And that was fine with them.  Or ask your partner to be your advocate and make those calls for you.  I know how emotionally draining it is just to be living with this, let alone having to be your own advocate, so it's great that you have someone who can help.  I'm really glad you don't have to go through this alone.

2. Nausea. Don't wait until you're feeling full-blown nausea.  At the first sign, take something!  Nip it in the bud before it gets bad.  I don't know what you're getting but I had steroids (which I hated but they helped a LOT) and some other med (don't remember what) during my A/C infusion; and for 2 days after I took more steroids. I think I took another drug at home for a day or two after as well but I can't remember the name. I also had Atavan to take as needed, and I asked for and got a script for sub-lingual Zofran (to take under your tongue so you don't have to try to swallow when you're feeling nauseous).  I never used the Zofran but I did use the Atavan several times when I felt a little queasy. I also used ginger (mostly in the form of ginger ale, but get the real stuff, not artificially flavored; you can also get it in capsules, or as candies you can suck on -- have someone check out your local health food store, Whole Foods, whatever).  I hate taking meds as much or more than anyone, but there are times when they are worth taking.  Ginger might help with your indigestion, too.  But before taking any OTC kinds of things, herbals, whatever, ask your dr.

3.  Depression is common and makes dealing with everything harder.  Does your oncologist have a therapist on staff?  or a NP or someone else you can talk with?  I've been lucky -- my oncologist does have a therapist.  Like you, I've resisted any meds because I've never been on anything long-term at all (even aspirin) and hate taking them, but I was fortunate to realize when my depression wasn't getting better that I needed help, and I got on a medication for that.  It helped.  Problems, anxiety, etc., didn't go away, but I was able to deal with them all better. having a professional to talk with helped a lot, too -- she was often able to give me a perspective that I couldn't see on my own.

4.  Pain from Neulasta shots (the day-after shot).  I had tremendous pain from the Neulasta shot as well.  I read somewhere here to take generic Claritin (NOT Claritin-D) to help with the pain.  It doesn't help everyone but it helps a number of women.  You can search for threads on it here if you like.  It's not in the literature anywhere and my dr. had never heard of using it for that problem but it made a world of difference for me.  It can't hurt, so ask your dr. and if s/he doesn't have objections, it's worth trying.  If it works, you might be able to get off the pain meds.  I took a Claritin (generic) every night throughout my chemo and beyond. 

5.  Hair!  I shaved my head when my hair started falling out and went completely bald all summer (I hate things on my head and even lightweight scarves drove me nuts).  Shaving my head helped get rid of the pain you describe -- I guess because the hair was no longer tugging on the follicles or something -- but not everyone can bear to shave their heads (although some women make a party of it). One thing about shaving is that it gives YOU control of the hair loss, which may sound minor  but helps some people a lot. But it's all what works for you, so do what feels right to you..  My hair started growing back within a few weeks of getting off the A/C and is now starting to look like a very short haircut instead of regrowth.

6.  Eating.  You didn't mention this but I'm sure with the nausea it's an issue.  Bottom line:  do the best you can, but the primary thing is to listen to your body and follow what it's telling you.  I won't go into details so I don't make you nauseous but I craved some very specific foods that I normally avoid, and things I used to love didn't appeal to me at all.  Eat what works for you.  Nutrition can come after you get through chemo. 

7.  If you don't know this:  drink LOTS of water, especially the day of and the days following chemo.  It helps you stay hydrated if nothing else. It also supposedly helps flush the chemo out of your system.  Your body is going to be out of whack in so many ways, and is being put through some really harsh treatment; keeping well-hydrated helps. 

Now, just some of my own personal thoughts:

Our local bc support group meets 2 1/2 hours once a month at night.  Do you think I could go while I was going through treatment?  I was too tired and the meetings were too long.    You may, like I did, meet other women in your oncologist's waiting room and become friends with some of them, and have your own informal support group that way.  We kept tabs on each other, called to check up when we knew there was a milestone, etc.  It helped to be in touch with someone who was going through what I was.   

I know it's really difficult for family, friends, SO's, etc., to watch someone they love go through this (I've been on that side of it before I got my own cancer, with a dear dear friend and with my mom), and they feel very helpless.  When you're watching someone hurt, you want to help more than anything.  Don't be afraid to ask for help of any kind, even if it's just doing laundry or making a cup of tea. Or holding your hand, or putting gas in your car, or bringing over frozen meals.  And remember it's OK to let them see you cry.  I know it hurts you to see them hurt but for the people you can/want to share that level of emotional intimacy with, it ends up helping both of you, and bringing you closer.  And when you share how you're feeling with them, you're allowing them to help you by supporting you, crying with you, holding your hand, whatever... and that makes them feel needed and like they're helping.

I did my own cancer treatment (A/C, taxol w/herceptin, lumpectomy, radiation, in that order, over 10 months) while living with and caring for my 89-y-o mother who also had cancer, dementia, etc. I had no nearby support or help (although friends kept me going, even if they are all miles away).  Mom died not quite 2 months ago, right after I started radiation.  So I know what it's like to walk through hell.  But as Churchill said, "If you're going through hell, keep going!"  There are tons of us (too many) who know what you're going through.  I never felt strong through any of this; I just kept putting one foot in front of the other.  But that's really what strength is:  you just keep going, and do the best you can, no matter how that looks.  WildRose is right, as were all the people who told me this:  you're stronger than you know, and you can do this.  We're all here for you in whatever way you need us.  Please stay in touch.  Warm hugs....

I did AC and neulasta shots too, and the whole experience IS terrible. You need to remember that you have a total war going on in your body; and chemo is your own ruthless assassin, your best chance to defeat an enemy that wants to KILL YOU! and Neulasta shots keep you from having to worry about having no white blood cells and getting really sick from something else. As others have said, take your anti-nausea meds before you need them. eat whatever you can stand. (I craved mashed potatoes with cheese, and hot Mexican food, wierd!), I shaved my head right when the first strand fell, and made it not as bad somehow, since it was MY choice. I found it theraputic to work, as it made me think about/do other things other than just sit around and think about how crappy I felt. Just take it one day at a time, you will get through it, things WILL get better.  Good Luck!

Steph,

Does your oncologist also say you have an unusual type of breast cancer for your age? Just wondering because stage 2 IDC isnt unusual in and of itself.

I also had AC and had all the bad side effects. I found that the more I fussed and fought it..the worse it got. I found that relaxing as best as I could was more help than anything. Hugs, Mazy

You might want turn over the 'information gathering' duties to your partner, because really someone should be writing everything down, getting copies of everything etc. I got a notebook and a binder and wrote down everything the drs. said so I could look it up later, write down questions for my next appointment etc. and also kept copies of my blood work, asked for information sheets about the chemo drugs, anti-nausea drugs etc. www.livestrong.org has free binders you can order if you want to have one already put together for you. If you have any questions about whether a side effect is 'normal' or not or anything else; call the chemo nurses. I found them to be very helpful and kept their number on speed dial in my cell phone!

Hugs and best wishes to you!!!

I had a terrible time with chemo, and I can tell you from experience that it will pass. I was so sick from side effects that I was hospitalized three times, for a total of twelve nights. But it eventually ended and I feel GREAT now!!!

I was told to call the doctor or emergency room if my temperature went over 100.4 F. I could tell a fever was coming on because I'd feel chilled out of nowhere. The chills and fever, in me, indicated that my white count had fallen too low.

I had a lot of nausea too, and there are many drugs that can help. Mine was more like gagging which triggered vomiting or dry heaving. I only rarely had what I'd term "regular" nausea and vomiting.

Please don't worry about bothering the cancer support people. That's what they're there for. I found that the team at my cancer center were some of the kindest, most generous, and helpful people I've ever met. I can only think of one woman who was an exception, and she was the kind of tough-as-nails nurses who got things done.

Rest and sleep as much as you can. Drink plenty of water. Stretch if you feel up to it. Back rubs might help. Make up some mild chicken soup and have saltine crackers around for when you can't tolerate anything else.

Good luck!!!

Oh Sweetie, you really need to tell your ONC about all of your symptoms, like yesterday and insist on meeting with him her if you can get out of the house. My first chemo was a nightmare but they found out that I had a delayed allergic reaction to the Tax in the T/C combo and none of the nausea drugs worked for me. They had to give me 'motion sickness patches' to wear behind my ear. I became extremely ill and was in the ER probably three times a week getting IV fluids and meds. They had to stop chemo because my SE were so severe and because I was allergic to the Tax. It has taken me five weeks to begin to feel like I can function at some level. I have spent four weeks curled up on the bed feeling like I was dying. hair fell out, toe nails went black, blisters inside and outside, esophagitis, taste buds fried so nothing tasted OK, lost 20 pounds, in the ER x3 a week. I could only suck on some Italian ice and had to drink through a straw. My mouth and lips were fried. I just could not care for myself and should have been hospitalized. I dropped my original ONC because he refused to address the severe symptoms I was having and am in the midst of getting a new team. If your ONC is not on call for you-raise hell. The women here taught me that. I worry about the heartburn you are having as my new ONC says to call him immediately if that is happening. He loaded me with Carafate and nexium. And 'Majik Mouthwash" for the sore mouth. Don't minimize any of your symptoms, especially if you are having this much trouble on the second chemo. Don't try to be your own doctor. My new ONC wants to know if I get a blister-period! I have his direct cell number. Chemo in normal people, drops them! And stop trying to be strong for family. My guess, they already know something is wrong and the worry is worse than them knowing the truth. (at least in my case).  I needed my family to advocate for me because I was so ill, I could not do it. I, too hear nothing after the word Cancer-so I take a tape recorder in with me to my doctor visits and take someone with me. I prepare questions in advance. I encourage your partner to log your symptoms immediately and call your ONC and ASK, is this normal? And know that you are not being a wimp. By now, you may be dehydrated and need IV intervention. ASK! Chemo is the worse thing I have been through-period! Sending you lots of prayers and gentle hugs!!! Please keep us posted daily on what is up. SV

Hugs to you. I had a terrible time too, and you are not a baby. Cancer sucks. Cancer treatments suck more.

Hi Steph3605: I know exactly how you feel.  After my first treatment I felt pretty good, but after the 2nd round, UGH, mostly naseous and bad, bad taste in the mouth, and constant spitting(felt just like a trucker)  But after a week (yes a week) started to feel better. I'm not taking any of the pills they want to give, a pill for this and that, too much medication. I am not one to take even aspirin, so I'm grinning and bearing it, 7 up or ginger ale has been a help. Also I'm going to buy saltine crackers, remember those goodies. Also I eat jello and that seems to work. I have round 3 on March 6th and definitely not looking forward to it.  But try to keep your spirits up is important, and of course cry as much as you want.  It does help!  Good luck,

Hi Steph,

Sending hugs and hope you are feeling better and stronger everyday.

~Connie

I'm so sorry for what you're going through. I had a similar experience, added with three hospitalizations for a crashed immune system and abdominal infection. I don't know what to say except that there is an end date. And once its done you will start to feel better. How many more rounds of this type of chemo do you have? I had four rounds of the AC, which is what made me so sick. Once we switched to taxol, things got MUCH better.

Hugs to you and hang in there!

Dear Steph 3605

so sorry to hear you are having such a very hard time - I would really be getting someone to come with you to the oncologist and get more information about the type of BC you have - IDC is not uncommon at all - and if it is ER+ PR+ and Her2- there is a chance that you could be on less aggressive treatment - it all depends on the nature of your disease...I think sometimes people make too big a deal about age - when it comes to BC it is all about the pathology and if you cannot take in the information please get someone to go with you and ask the onc what type of BC this is and is there any alternative to the current treatment... there is never any harm in asking questions

Fidelia

I started chemo on Dec 8 - have completed 4 rounds of AC and 2 rounds of Taxotere/Gemzare so far with 2 more of those to go.  I have coped by maintaining running, cycling and going to the gym on the bad days for eliptical/weights.  I have found that exercise has really helped for mood and keeping energy.  I also found that even though everything tasts awful, that if I eat a bit of protein every evening - it helps keep it at bay.  And I also agree that Vernor's ginger ale is the cure all for nausea and that awful taste in my mouth.  The Biotene toothcare products have done wonders for the dry mouth stuff.    I have no suggestions for sleeplessness.  I don't think I have slept more than two good nights since diagnosis in November.