January 2012 chemo

Vent warning!



Does anybody else feel like their onc team is just there to give out the poison but not really there to follow up how you go afterwards? My breast care nurse doesn't phone to check on me (although she did say at the beginning that she tries to phone people).



I have all these little side effects and I really feel like I'm on my own trying to deal with them. After my first round I called the number they give and the advice I got was to either go to emergency or go to my PCP if I was concerned. My PCP is not a cancer specialist! He's great but I just feel a bit deserted by the onc team (big hospital)...



Struggling through again with the tongue thrush that doesn't seem to want to go away; the nausea (have all the meds but have worked out that I just need to think about the treatments and I feel nauseous despite the meds); woke up with pins and needles in three fingers this morning (did go away after a few minutes); and yesterday my BC breast started hurting and feels "lumpy".



I'm so over this and have no idea how on earth I'm going to be able to get all the way through txs until June!



Jenn

For those of you dreading tx #3, maybe it won't be so bad!  I had my 3rd AC on Friday.  Saturday was fine.  Minimal heartburn, but very manageable.  Sunday not so good, tired and cranky with some nausea.  Took some ativan to help sleep both nights.  I was dreading Monday morning, back to work.  This has been my tough day both other times.  Fortunately I felt okay, not perfect, but very manageable.  Taught my full class schedule without my assistant and really had enough energy to get through the day.

They way I look at it is I'm 3/4 of the way through the difficult part of chemo.  Only one more 'red devil' to face.  I am hoping the taxol is much more manageable.  Although, I'm not looking forward to the increase in steroids!  I hate taking the steroid!  I look like I've been on a bender with my bright red face and blood shot eyes.  Add the jittery shakes and I look like I'm flying!

Hang in there everyone!  We are almost done!  Well, getting there anyway!

Hey all,

Just climbing out from treatment #3.  I know this doesn't sound very positive of me, but I am tired of everyone around me here telling me, "Yay, at least you are half-way done."  I have been very positive and smiling to them, but inside I am thinking, "Hell, I have to go through this three more times."  A very glass half empty attitude I know, but I cannot help it.  On the bright side, I know I will feel a little better each day now and will hopefully feel relatively normal by this weekend.  Good luck and hugs to all those with upcoming treatments this week.  We will get there.

Jenn that is awful that you can't talk to your team.  Here in Israel my Onc. (Who is acting head of Shaary Tzedek hospital in Jerusalem) gave me his home, cell and Email.  He told me "Please call if you feel you need to.  If I determine you are abusing the calling I will tell you but call if  you have any questions!".  My surgeon also gave me a whole list of numbers including his personal numbers.  I have the head Breast Nurse's number and even the girl at the desk at my local Doctors clinic gave me her cell phone number "because sometimes it is hard to get through on the main phone".  

Perhaps when you go for your next treatment you can complain?

Peggy 

Good morning (I guess, depending on where we all are!) to everyone!  I woke this morning to a new and excrutiatingly painful SE - acid reflux or indigestion, take your pick, I don't know which.  I can barely move without feeling like I'm being stabbed.  Even drinking water is painful right now.  It seems to come and go in waves of sorts.  I've been chewing Maalox all morning, but it only provides temporary relief.  I had minor heartburn during my first tx but this is almost debilitating.  Does anyone have any medication recommendations to deal with something this harsh? 

NancyHB-I take a PPI called Aciphex. It's by RX only and many insurance companies ask for a documented trial of generic omeprazole before they will cover it. Omeprazole is fine too and it's over the counter. Go to Costco and stock up. These drugs have few-no side effects and are very effective. Another point is be sure to take all medications at least 30 minutes before lying down and take them with plenty of liquids. My DH took an aleve one night and went straight to bed. At midnight he was being rushed to the ER with chest pains, etc. He had what is known as "pill esophagitis". Basically the pill was dissolving directly on the muscous membrane of his esophagus and attempting to burn a hole in the process.

Good luck-get a PPI in you and you should start to feel better soon. Most directions are once a day but it's ok to take them twice a day for tough cases. Be sure to ask you MO or GI doc what they think too.

Hello everyone-facing round #3 later today. Again the feeling of dread. The week off from appointments is so nice but here we go again.

I also wanted to give a couple head covering recommendations. I bought a few things from a couple different shops on etsy.com. The first is a cotton head cover from Jemima Jackson in NYC. It has an elastic strip a the base of the skull and you simply slip it on and tie it at the back. It works great alone or with a fleece or knit cap underneath. I do feel it needs something under it though, otherwise too much of the back of my head would be exposed. the shipping was very quick. I like it. www.jemimajackman.com The other items are little knit caps by CJ Hats. The seamstress is a survivor of Stage IIIB inflammatory breast cancer. She knows what we need. These are simple, comfortable caps for around the house or under scarves. They are very reasonably priced ($5-$15), I like that. I especially like the one I bought for sleeping. It's fleece on half and then white cotton knit on the other half. www.cjhats.com. They can also be found on etsy.com

Pepcid Complete works for me but I have to take it before a meal and make sure I stay upright until digested.

Peggy 

NCBeachGal - thanks for the hat recommendations. I just ordered a few things from cjhats. Yesterday I had my friend Scotty buzz my hair. I wear my hair pretty short anyway, so there wasn't as much of a shock factor. But still . . 

Tomorrow is A/C treatment #2. I'm trying to approach it with the attitude that it's one more step toward getting through this. And yet, I dread it. Since my diagnosis, I find that my mind is a whirlwind of competing emotions - hope/fear, determination/dread, acceptance/anger, etc. That in itself is exhausting:) I hope everyone is as gentle with themselves as possible.

 Annie 

Judy67,
Absolutely! We really do not have much of a choice, so the only way to look at it, is, as you said "We will get there"!!!

Have you noticed that the supplements you are taking help? I hope so, and that SE, if you have any after this treatment, will be few and tolerable.

Hi everyone. Just checking in on everyone.

Acid reflux is my enemy right now too.

It's been my biggest issue. I have been taking a lot of OTC Zantaz 150 twice a day.

This feels very much like pregnancy.

Hey I got my Its a wrap scarf in the mail. Has anyone else got theirs? It's really nice. I made several triangle bandana type scarves. They work great.

Well I wish everyone the best.

Stay strong!! We will get there.

NCbeachgal - I love some of those hats and turbans. I haven't ordered yet but I may. There's a woman locally who makes buffs and donates some of the proceeds to the local breast cancer resource center. I've been meaning to go to Joanne's fabrics and pick out some fabric I like for her to make a few more.

Annie3310 - I agree the mental games we have to deal with are exhausting. Good luck with your tx tomorrow. Give youself enough time to rest. These do get increasingly hard, so look back on how you did the first time and expect to need just a little more time to rest up.

I've finally on the upswing after #3. Hoping to get some things done around the apartment and work so I can go into #4 knowing I can afford a few days of extra-duty rest just in case.

I got my 'Its a wrap' this week also!  Very nice!  It arrived carefully wrapped with a little card personally signed by staff.  Really nice touch! 

I bought a Buff on ebay and found that it might not work well for me. Apparently, I have a large head.  I don't like how it looks on me.  It is too tight.  There are a few good 'how to' videos on youtube showing how to wear a Buff. My daughter offered to make me a few if I find a material I like.  I might have her try one or two just a bit larger than the one I bought.

 I have to check out etsy.com.  I'm an ebayer from way back, but hear good things about etsy. 

What is up with the acid reflux?  This tx I'm getting hit harder than usual too.  Tums have covered my issues up until now.  Looks like I'll be packing stronger meds today!  I think I was feeling the neulasta in my sternum last night.  The combination of a tight painful chest and acid reflux was uncomfortable for a few hours.  Fortunately, my neulasta SEs are short-lived (so far), so I didn't need to take anything.

I hear ya with the tomatoes. Nexium seems to help but it takes a while to kick in.



I seem to have had a different experience with the first treatment. Any feedback would be greatly appreciated.



Severe nausea, light headedness and severe heartburn followed my first treatment for a full six days. On the sixth day I completely broke down when my 5 year old reached out to hug me and I dropped to the floor beside him sobbing because I didn't have the energy to hug him back. That morning my husband took me to the ER. They did some blood work and said my counts were ok. Upon examining my file and the meds I had been taking, they decided that I was one prescription short for the nausea. They also gave me some nexium for the heartburn. So hurray! I feel human again. However, I am terrified for the next round cause I keep hearing it gets worse with each treatment.



So I guess my question is, based on this time taking the proper amount of SE meds, to those of you who have gone for the second time, typically how long did it take to come around?



Sorry for rambling on, but I would appreciate any feedback. Thanks