January 2013 chemo group

Good morning, Ladies.

A couple of questions:

I'd like to hear what warnings, if any, you were given about being "out and about" around the time of your Nadir. I would like to attend church tomorrow (it will be day 7 for me, if treatment day is considered day one), but don't want to take an unwise risk.

Also, for those of you who have had your second (or even 3rd) treatments, have you found the SE's to be stronger with each one? I am particularly dreading the burning pain in the stomach and small intestine area. But any symptoms that did or didn't increase would be good to know about.

I am so thankful for this site. You girls are such an encouragement.

Judy

OMG - miss a little, miss a lot.  Hi everyone.  Just an update on my part.  I had my first chemo treatment on Thursday.  All went well.  Slept fine with my ambien.  Yesterday (friday) - the days seem to be jumbling together.  I thought everything was going well, drinking water and was getting ready to take my anti-nausea pill (zofran), when the nausea hit like a ton of bricks.  After swallowing the pill, I lost it and everything else.  MO made me come in for hydration, anti nausea meds, and my neulasta shot.  I realized I hadn't eaten anything before the zofran, so I'm now forcing myself to eat small bland meals every few hours.  I still don't like the water.

Sandy - I never heard anything about mixing the water with other liquids.  I've been drinking straight water.  The lemon I was using in it started making me feel sick.

I'm on TAC - has anyone been seeing their face and chest get red.  It looks like I have broken capillaries on my face. Ugh!

Hair turbans/covers - has anyone found any nice ones?  I am having trouble finding one that I like.  Has anyone gotten any with the attachable bangs/hair?

I forgot who had said they were taking celexa, but I take a cocktail of that and wellbutrin, and I LOVE it.  I feel so much better since taking them.

It is so encouraging and wonderful being in this group and keeping up with all of you!!!!  Lauren

I did watch the t-shirt wrap video. I've already sacrificed one of my guys shirts for the cause. I think I have a good selection of knit caps (its cold here) and scarves/bandanas to get me through this first shocker of baldness... I was thinking about getting one of those hair halos to wear under my caps... I am going to venture into a wig shop next week and check it out.

And the journey continues.....

JudyinNC - I just had my second AC treatment on Thursday and although it's early the SE's seem about the same to me.  I'm on the downward slope (day 3 was the worst for me last round and today is day 2), and the only really bothersome thing is that I can't seem to sleep past 4:30 a.m.  I blame it on the steroids.  I take my anti nausea pills & steroid religiously and switch to 6 small meals instead of 3 large ones on the days immediately following chemo.  Seems to help some with the queasiness.  I also try to walk at least 20 - 30 minutes every day.  That helps with both the steroid restlessness and the constipation.

Lauren15 - My face and chest are beet red too.  This happened to me the last round.  Again, I blame the steroids.  It went away the day after I stopped taking them last round.  Also, my favorite indoord headwear is the buff -- looks sporty to me.  I have a few scarves that are pretty and comfortable but they make me look like I'm doing chemo whereas the buff looks like I might just be a serious bicycler/runner (to me anyway).  They are a little spendy and mine took awhile to arrive.  http://www.buffusa.com/sports/  I wear a wig to work and have gotten many compliments on my new haircut.  People are amazed when I tell them it's "chemo Barbie hair".  I wasn't willing to spend the money on a real hair wig and was lucky to find a manufactured one that was close to my original hair.

Wishing everyone on this board well.  I started chemo at the end of December and remember what a gift it was to read the posts from women going before me.  A dark road is always best traveled with others who can light the way for you a bit.

I keep seeing my sisters here online talking about waiting for the other shoe to drop.  That's what I'm waiting for and I wish I could just shut my dang mind off.  After my reaction to the Taxotere I was terrified to have them restart it.  I asked what the protocol would be if I had a reaction after having already received the 8mg of dexamethasone, 50mg of Benadryl and I don't know how much hydrocortisone.  They wouldn't tell me other than to say that that rarely happens.  Well, they told me my initial reaction to the Taxotere was rare also.  Didn't take a lot of comfort in that, but we were able to finish the Taxotere.  

I went back yesterday to get a shot of Neulasta (I had really bad nadirs of all white and red cells back when I was treated for the Hodgkin's in '87 and '88, so they didn't even want to take a chance) and took a Claritin Reditab last night.  Hope that's as effective as Claritin.  I think so because the ingredient looks to be loratidine in both.  When I looked at myself in the mirror yesterday my cheeks and neck were red and I though oh, no, am I reacting to the Neulasta?  The Zofran?  The Taxotere?  I am so not looking forward to hair falling out again.  It's good to know about the Claritin and NSAIDS for the bone pain.  The taste buds come back after a few days?  I'm seriously hoping so.  I underweight.  I've been under a lot of stress.  My dad died in October of 2011.  My 93 year old grandfather was diagnosed with pancreatic cancer in February of 2012.  He decided to take chemo to stay around as long as he could for my grandmother who's 93rd birthday is today.  He was doing fine.  My sister had a ruptured colon and had to be hospitalized for a seven hour colon resection and hysterectomy and had a really difficult recovery.  Our lender filed foreclosure against us.  I ended up in the hospital with a respiratory issue related to my severe restrictive lung disease in July.  They couldn't figure out what was causing the wheezing.  My grandfather caught pnuemonia and had a minor stroke and was in the hospital for about three weeks, then transferred to a lousy rehab facility where we were told they could rehab him.  They did nothing but let him go into septic shock from not enough fluids.  He ended up in the hospital on a ventilator.  We finally had them remove the ventilator because the rest of his organs were failing and brought him home to Grandma.  He stayed with us for eight more hours and passed away on 9/14.  I ended up back in the hospital with mycoplasma pneumonia on 9/30 for eight days.  When I'm stressed or anxious I stop eating.  I'm 5'9" and weigh 117 lbs.  I've been trying to stuff food in my face to at least keep from losing weight.  My goal is to gain weight, but for me it is really, really hard to eat between 1800 and 2000 calories a day.  So, I'm a bit worried about this taste bud thing.

Also, when I asked them if they'd be giving my the benadryl and hydrocortisone BEFORE the Taxotere next time, the nurse said no.  I asked why not and told her I didn't think I could face that again.  It was, bar none, the most frightening experience I've ever had.  Probably because I have the restrictive lung disease and I couldn't catch my breath, so I'm sure others without lung disease wouldn't feel that same level of panic.  She said, once again, that rarely happens and we don't want to give you any medication you don't need.  Well, what's the harm in getting a little extra Benadryl and hydrocortisone? I'm thinking the benefit to me is far greater than the detriment in this situation.

Oliverhog, holy geese you have been through alot! Your strength is amazing. Keep at it about your side effects. Go directly to your MO is you are not getting the answers you want. I love my nurse, but, if she just flat out said no, I would seek the MOs opinion. They are already giving the benadryl and hydrocortisone to you, so whats the dif if the give it before?? I'd want an explanation. It may only be a rare occurrence, but IT HAPPENED TO YOU. So, keep fighting my sister. You are tough!!!

Hi Warrior Sisters,

So far worst SE is this dang headache..  I had a bag of anti-nausea drugs on Thursday and I was afraid of that!  They told me to take Excedrin Migraine, problem is only 2 in a 24 hours.  My hands seem to swell at night from the Taxotere, so water, water, water!  Nothing really taste great but no Nausea.  Last day of steroid's.  No real bone pain from Neulasta injection but I also took the Claritin and Alpha Lipoic Acid 200 mg a day.  The Nurse Practitioner told me some patients swear by that, so I am giving it a try.. 

Sheryl, how are you?  Hope your SE's aren't too bad.

Lauren,  hope your Saturday is good! 

Olivehog, I must have missed your post.. What was your reaction to the Taxotere? Mine is the hands swelling. It looks like we are on the same dose of Dexmethasone 8mg twice a day.  Today is my last day for those. 

Well it's 30 degrees in Sunny California, so I am going to get a nice walk in, hopefully it will help the Headache!

Everyone else have a good Saturday, we can do this!

Carla

Oliverhog, I'm wondering if the red face/chest isn't from the steroids.  I had very red cheeks as well and I think my chest might have been slightly flushed as well. 

You have been through so, so much but one thing is for certain - YOU ARE TOUGH - just like Skigirl said.  

My condolences on the loss of your family members.

Also, I agree completely with everyone else who says to take this directly to the oncologist.  Is he or she close to the infusion area?  

Well things have been interesting for the past 24 hours, to say the least. I had to get my port installed yesterday at the hospital in the OR. The surgeon nicked my lung and collapsed it. What was routine suddenly became an emergency! She also must have gone in and out of my vein because I lost two units of blood and may need a transfusion. I now have a chest tube helping me keep my lung inflated and I'll be here for a few days. The pain is significant and I'm limited in pain meds bc they make me sick. 



My poor husband slept upright in the rocker in a cold room next to the drafty windows. Not a complaint from him though. My in laws have my kids. My parents, who took me for the procedure, because they were home and it allowed my husband to sleep after the night shift, are shot. 



But I continue to improve. I'm better with the passing hours. Considering I'm still in pain, of course it's all relative. But I'll be alright. Apparently, my thoracic surgeon who comes highly recommended is a hardass and he'll be pushing me to walk, sit up, and blow breath into a torture tube.  All the nurses fear him but praise him highly.



Never a dull moment!

MandyNJ- So sorry you are having complications!!! I'd be so pissed. Hang in there, thank god for your support people and family. Unfortunatly, the hardass surgeon is just what you want. He wants you well enough to get out of there. I hated being in the hospital. I wanted to go home the next day. I dont like the way it smells, the germs, the PEOPLE. It seems just when people need to treat hospitals like libraries, they yell and so shit that keep resting patients awake. I had a guy stand outside my room and yap on the phone forever. I wanted to throw my side table at him. lol. I hope you progress quickly and get home where you will be comfortable.

I HAVE BEEN A LURKER.  THIS IS MY FIRST EVER POST TO A CHAT ROOM.  I START AC CHEMO IN 2 1/2 WEEKS.  THIS WEBSITE IS A BLESSING.  I NEED TO BE WELL INFORMED SO I HAVE A FEELING OF CONTROL.  THIS WEBSITE HAS ANSWERS/OPINIONS TO EVERY QUESTION AND CONCERN I HAVE.  

Welcome Forest.  Sorry you have to be here but since you have to be - you're in the right place.  

I hear you re: control - 

I've taken so many screenshots of posts over the months since I joined here that it's ridiculous but I've made several files and frequently go back and check things out.  I even started a FEEL GOOD file of stories from women (and men) who are doing great a few years (or several years) out.