February 2014 Starting Chemo Club

DiabloMom

h0pe - I fixed my signature.... not mets.  Sorry for the confusion.

My treatments are every three weeks for 18 weeks then continue the herceptin on the same schedule to complete a year of treatment.

Debdawn64

Dear DiabloMOM, I was on the same treatment regimen. I also had 33 radiation treatments. I will continue Herceptin through June, wondering if anyone has had any complications with the Herceptin? So far so good for me, other than my heart function has dropped a lot. Doctor doesn't seem to be concerned. It was at a 50 and 49 is considered below average. I started with a 63 heart function. 

megomendy

Debdawn, do they tell you your heart function # when you get your echo? I had mine last week, but havent been told results yet. I assume it was fine or they would have called me.

lago

Hi DiabloMom

Herceptin I did all 17 rounds (some people get 18) and as far as I know I don't have heart damage. I finished Herceptin 2.6 years ago.

Gardengirl66

Maggiemay, welcome , wishing everything will go as smooth as possible for you port placement and start of chemo. The first week is the hardest, hoping you will have minimal side effects... But it is doable,I did not work , but went for walks , did errands etc.

Magandmalsmom, welcome , hope your first goes smooth for you as well, with minimal side effects. I had a part with my kids and husband, having icecream cake to "celebrate". I shaved it my self , about 21/2 weeks after first infusion...feel fine without it, hair was getting everything. I have a wig , wear only for taking kids to school , or when they have friends over...they prefer that...otherwise just scarfs and hats.

Jbokland, great way to shave your head ,love it!

DiabloMom, great idea to have a party ...loosing our hair is all part of it...so might as well make the best of it !

Just finished second infusion, had neulasta, and now just have to get through the pill regime for the next few days....halfway ! Yes, we will have a mini celebration to mark that....anything to bring lightness to this.

Ula, hope you are feeling ok, thinking of you.

Allydp, hope you are feeling better too and sorry to hear that you have to attend a funeral (hugs) ,hope everything goes as smooth as it can for you.

Wishing everyone all the best, and thanks to everyone for the help I continue to get from this site.

Sicilian

Good luck to all of you just starting their journey!

Lago, thanks for the hair conditioner idea. God knows I have plenty around that's not being used right now! I've been using Cetaphil soap and then moisturizing, but that's not cutting it.

Hope, I'll keep an eye open for those. Sound delicious!

Finally seeing the end of the SEs from my treatment. I get my treatment on Thursdays and find my worst days are 3-5. Mostly, though, that was due to the Neulasta pain. The stomach stuff is expected, but the pain from the Neulasta was completely unexpected and just literally laid me flat.

lago

Sicilian I don't use that formula on my face. My face I too have use Cetaphil (since high school actually). I also use a moisturizer for my face both day and night. When I was on chemo I did not use any of the firming moisturizers. They can be a little more drying, especially the firming ones.

trying2staypositive7

Good Morning Ladies! I had my first treatment (cytoxan) on Wednesday. Day#1 and #2 were fine. Day#3 felt like i was run over by a truck! I vomited all night the night of day#2. My MO told me before chemo started that i wouldn't need anti-nausea pills (he thought ginger would do the trick). Wrong! Day#3 i started anti-nausea pills and finally felt human on day#4. It's day#5 and i'm finally able to eat. I have a question. Has anyone had a cold during their treatment? I was getting a cold the day of infusion. I'm wondering if the nausea is from the cold and not the chemo? Does anyone have any insight? I'm hoping that the second infusion will be better! I don't go for 2 weeks. Hope that everyone has a great day today. And thanks for all of your posts, which keep me sane in this insane time!

Tisha

lago

trying2staypositive7 seems to me that the flu can have issues with stomach. Not so much with the cold. I would say next time you know you get nausea on day #2 so I would start the pills at least the night before. Sometimes the worst chemo can be the first because you don't know what's coming. Once you know you can pre treat or know how to treat once it comes. With nausea it's best not to wait till it gets bad because then it will be harder to get under control.

I pretreated for constipation after the first treatment. It was never an issue with the other 5 tx.

Macintx

Now that so many of you had several rounds of chemo, I was wondering how your 2nd and 3rd etc. compared to your first as far as SEs are concerned.  

trying2staypositive7

Thanks Lago! I'll definitely try that

AKJ

On my first day they just handed me anti nausea drugs before they started the infusion. I've been taking them preventatively and haven't had a problem with nausea. Good luck tryingtostaypositive! I like your user name. 

Mor

my taste buds have been shot since first chemo.   I've had 2 chemo sessions thus far.  Nothing, and I do mean nothing, tastes any good.  Everything tastes like dirty, soapy old dishwater.  That is the only way I can describe it.  Most things I just toss.  But, one must eat...so I am surviving on instant oatmeal, canned soup and an occasional scrambled egg.  Even they are horrible, but I must eat so I tolerate them.  

Does anyone else have this problem?  

Even all that water we must drink tastes the same way, but it has a slimy texture.

princessrn

****  I posted this in the Triple Positive Group too..many of us the same but some not and too lazy to retype it specifically  LOL

Hello Ladies,

I am finally feeling myself again. Holy crap Batman! Sheessh.. So what's left....purple thing on tongue went away in three days. My skin seems exceptionally dry and flaky. Today I have my appetite back but being careful.

Interesting info regarding the Neulasta shot. It seems we all have a different level of response. Some really respond with rebound WBC of 30-40,000. Those people tend to have much more sever bone pain. Just thought I would share that.

ang7894.. the cartoons are hysterical! thank you for the laugh.

Lago.. Were you H.Pylori+ on endoscopy?

Diablomom.. we are on the same protocol and started the same exact day. Let's keep in touch if you don't mind.

Debdawn64.. glad you are nearing the end successfully!

Sicilican..I hear you on the messy stomach. I hope you are feeling better now. I am sorry. may I ask what treatment regimen,it's not listed. Yes, to super dry and flaky skin.

Dgdm1003... second round was better? I can hope! I am on same tx, I felt super bad until Thursday the week after TCH. I am hoping the second round goes better for me too.

Allydp and Ula... welcome and hope you do as well as can be expected!

H0pe.. I did have a better weekend. I was able to clean up, do laundry, take the littlest indian to bowling, and cook. Big difference from last weekend! I did take my meds before I needed them but I think I have to take a narcotic for the headache which as a nurse, I was reluctant to do. I kind felt like I must be being a baby. Everyone else seemed to do okay. And I don't remember anyone else getting cramps like me. They were so uncomfortable. I had Monday off and then had to work and it was tough going Tues and Wed. I have meds now and will definitely take them.

Happy Sunday..

tangandchris

I'm wondering also how the SE's are after the first tx. The nurses told me the first was usually the worst, but what I wonder is will they hit timing wise about the same.

Mor-the taste bud thing was really bad for me the first 2 weeks and seems to have eased up for me this last week. I think you should ask your MO about this.

Tisha-surprised your MO would not give you anti-naseau meds and have you rely only on ginger. I'm sorry you went thru that! I was so sick the first night and 2nd-4th days of my 1st treatment. MO was surprised at how quickly it hit me...but I wonder if what I ate for lunch had anything to do with it. I'm going to eat a little differently this time and hope that makes a difference. But, who knows!

((hugs)) to all of you

trying2staypositive7

Thanks AKJ!

Tangandchris-Thanks! I'm like u! I specifically asked for the meds and MO said i wouldn't need them. I know better this time! Glad u told me about the food stuff. I'm going to eat differently the next time too.

Wishingeveryone a peaceful, happy, and side effects free day! Big hug to all

megomendy

Since you ladies are a month ahead of me (I start chemo this Friday) do most of you drive yourself to your treatments or have someone drive you? I am definitely bringing my husband to the first one. And I can get someone to come to most of the others, but it seems like it would be so boring for the other person. I know. I know, I should only be focusing on myself, but I was just wondering if it was necessary. I know it's probably different for everybody. I also thought about having someone drop me off and pick me up sometimes.

kjiberty

Here's some answers to your questions:

Day of treatment-fine, day after okay.  48 hours after infusion is when s...t hit the fan.  For example, infusion on Thursday, shot on Friday.  Sat. noonish--sluggish, felt flu like.  Sunday the worst. Mondy still weak, Tuesday, started crawling back.  My MO said the S/E's you get after the first infusion usually will give you an indication of them with the subsequent infusion. Remember, they are cumulative, so it may take longer to recover with each infusion (it did me).  

Hair came back in white, whisky, ostrich like strands a few weeks after my last tx.  I was freaking out thinking my hair would be white.  It did not.  Got my first H/C about 8 weeks PFC.  Just cleaned up.  Got it colored (non-ammonia color) too.  Went topless permanently at 9 weeks. I hated that wig.  Just being honest, even though I got a ton of compliments on my new "haircut".  

My taste buds were shot too.  I couldn't drink anything hot.  I preferred cold drinks (chose iced coffee instead of hot coffee). I suppose it was more soothing on the tongue.

Megomendy:  I truly could have driven myself to and from the infusion center, because I felt fine.  We even went out for lunch after the first one.  My husband and/or friends wanted to come with me so I let them.  

lago

Mor I didn't have major taste issue but I've heard  that citrus might not be too bad. Try squeezing lime, lemon or orange in your water. Also if you have a metallic taste try eating with plastic utensils or wooden chop sticks.

Sicilian

princess, I am doing 12 weeks of TC. I was borderline for chemo with an Oncotype of 17. My surgeon recommended it, onco said he didn't think I had to do it. I just felt that I didn't want to look back one day and not feel I had done everything I could to kick cancer's ass.

Meg, I drive myself to infusion. My husband has offered, but I had four surgeries between 11/12 and 1/28, so he took off so much time from work that I didn't want him to keep taking it. My daughter is a nursing student and she has clinical when I have treatments, so she tries to come in when I'm there and hang out.

My first treatment had an unexpected surprise! Kevin Bacon was filming The Following at the hospital and was right outside the window of the infusion center, so it was a very welcome distraction.

I have noticed that the SEs seemed to follow almost the exact same path. Thursday and Friday was OK, just feeling "off". On Saturday night, the bone pain from the Neulasta would set in, which would hang tough until Tuesday, and Sunday-Friday, the runs set in. It's wonderful to have cramps and diarrhea, a diminished appetite, and this morning, I discovered that since I last weighed myself on Thursday, I gained two pounds!

I know that lago has mentioned the bloating, but did you have to diet to lose it afterwards or did it come off as mysteriously as it comes on???

KAT4856

Macintx

I remember I was concerned that maybe my 2nd AC would be worse because  I heard a lot of people say the side effects were cumulative but I did not experience that. Each infusion was just about the same I had my infusions on Wednesday and by Saturday I would need to take it easy for the day because I didn't feel right and did not have a lot of energy, but I never felt any worse. The 2nd week I always felt more energy and could push myself to get on the treadmill a couple of times for 20 - 30 minutes.

The Taxol infusions that I am on now I do not even feel the fatigue. I feel pretty normal. Some stomach stuff first day or two but so far that's it.

formydaughter

I'm going for #2 tomorrow. I'm getting chemo brain / can't recall whether I've told you this yet, but when my hair started falling out this week, had my bro shave my head. At first I thought I wouldn't do it. But then the time was right.i was do afraid of losing my hair.   I have all these wigs and scarves and hats on order, but the shocking thing is that I like my bald look, never in a million years did I think I would. It started here : My OB asked me if I'd remove my wig, when I did, he took me over to face a mirror and told me how beautiful I was. He said it several times to make sure he was getting through to me. He put his head against mine and joked that it looked like we had used the same razor blade setting. He said he hoped I'd walk out of his office looking that beautiful. I did. It gave me the confidence I needed. Now I'm playing up my eyes with fancy eye make up (usually I wear none). I'm totally rocking the look! Or at least that's what my friends have been saying. I'm proud of me for it too. 

Here's to hoping my chemo sisters have a good round this week!!

KAT4856

Mor

I found the same with AC infusion. I found it hard to get excited about eating because nothing seemed to have a strong taste. Good news though I have finished AC and now I am completing my Taxol infusions and there is a definite improvement in taste buds. I've begun to enjoy eating again. Did lose a lot of weight though and so I'm hoping I start to put some back on. The weight loss was from no appetite from being anxious and also the taste buds

lgoldie

That is great news.  

Melrosemelrose

Megomendy-  As for having someone with you at your rounds, it may be a good idea.  My husband was with me at every chemo round and I was glad and thankful he was there.  He was great company and got me whatever I needed ( ice, ice water, lunch) and helped me with the icing of nails during the Taxotere infusion.   As for driving myself home, I don't think I could have done that because of the pre-chemo IV drugs that I had.  I was given Ativan and Benedryl in my pre-chemo IV cocktail so I was always sleepy when I got finished with my chemo.  I also have been the chemo buddy for several women since I finished my chemo.  Having someone there to chat and laugh with, helps make the time go by a little faster.  The family/friends who accompany you are not concerned about getting bored but there to support and help you. 

Mor- I used to put orange slices and lots of ice in my water.  Sorry your taste buds have gone on vacation and food just doesn't taste good at all.  I gave up butter and salt while I was on chemo because I didn't like the taste of the texture those two things left in my mouth.  Yes, you do have to eat.  I always viewed food as nutrition and fuel for my body while I was in chemoland and accepted the fact that food didn't taste right.  I remember sitting af the dining room table and boo hooing after dinner one night.  I cried like a little kid because the food didn't taste right.  I look back at that incident and know that my normal self would never do that but at the time, it was just something I had to do.  Hope your taste buds come back soon.

Macintx

Kat, good to hear that the SEs weren't much different for you.  I feel like I dodged a bullet with the first round having very few SEs.  Just a weird feeling and no appetite on Thur after Tues chemo.  By Fri, appetite back a bit, and by Sat, feeling hungry enough to make lasagna from scratch.  I know things can change, but I'm glad to know there's a possibility that it might not get worse every time.  

tangandchris

formydaughter-what a wonderful thing your OB did for you! I wish all dr's could be like this

DiabloMom

princessrn..... of course. 

New SE for me. Acne all over my face and a rash.... the rash is only on the top of my right hand, not including the ring and little fingers. Odd.

Siniberry

I had my first chemo treatment Feb 17th. I went to the dr and asked her why my head felt sore and she said the hair is almost ready to come out. She told me by Monday I would start losing it. Right now I can pull gently and a lot comes out. My son says mom don't shave it till it comes out on its own. My hair is very very short now and is falling out so I will be shaving it this week. I try to cook and bake when I feel like it and I'm afraid to now, so off comes the hair lol it will grow back it's just hair, It's not what defines me.

I am still Mom and always will be.  Next treatment for me is March 10th.  Good luck ladies

Mor

melrosemeir....

I will try orange slices with much ice.  I will try anything to get all that water in my system.  You seem to truly understand how badly all foods taste.  

I find it difficult to swallow such awful tasting foods.  I seem to live on instant oatmeal, canned soup, Fage yogurt with different jams mixed on.  These I tolerate because I know I must get nutrition.