November 2014 Starting Chemo Crew

amylsp

Thanks Kiwi. Just got back from getting my Nulasta shot. So far, it's not been too bad. I did end up getting some bad heartburn the night of my chemo, but like I said, I'm prone to it, and was eventually able to get to sleep after I took my meds and used a heating pad. Otherwise, I've just been a bit tired and went to bed early last night. Today I'm off the steroids though, so my Oncologist said to expect a bit of a crash. I'll let you know how that goes.

The only other SE I've noticed so far is my mouth is a bit sticky and dry, so I'm using the biotone toothpaste and mouthwash. When is you first chemo again?

Nik1966

Amy, my first chemo is Wednesday the 3rd.  Port is being placed on Monday afternoon - I am worried about that.  I know in the long run a port is going to be easier, it's just the idea of it.

Liwi

I had my first infusion Thursday  October 23rd, the day after my port surgery.  Also had core needle MRI biopsy of a small satellite tumor Monday that week.  So it was quite a week of procedures.  Doing Neoadjuvant  chemotherapy based on my doctor's recommendation.  Plan is 4 dose dense treatments Adriamycin/Cytoxan then 12 weeks of weekly Taxol.  I took all the prescribed anti nausea meds and they worked well.   That was my biggest side effect concern.  So very happy did not occur.  

Last night started having bladder infection symptoms so contacted on call MD and he wanted me to immediately get on antibiotics so needed to go to 24 hour pharmacy to pick up prescription.  Wasn't sure if I needed to call but they had that on the list of things to pay attention to in particular when White blood cell count low which mine had been when tested the day before.  Not sure what caused it but maybe I need to drink  more fluids.  

Thanks to all for the great suggestions in this thread.   

Nik1966

Liwi, how did the port work for you since you only had it put in the day before?  Glad you got the meds for the bladder infection.  I will be calling them for any little thing.  I am encouraged that your anti nausa medication worked well. Hopefully it will for me too.  If there is one thing that I learnt from this forum is to drink, drink, drink and then drink some more.

LauraW68

I was told I would start chemo 4 weeks from my surgery day (October 24) so that makes it sometime around the week of Thanksgiving. I won't know anything for certain though until the results of my bone scan I did yesterday, the 31st is back. I have a CT scan scheduled for Monday morning and then I see the medical oncologist Monday afternoon. So it's all still up in the air as to when, how long, what meds, etc.  

If it is going to happen the week of Thanksgiving though, I am going to ask if we can delay until first week of December. I'd rather be able to spend Thanksgiving with friends and family instead of dealing with a chemo port, etc. that week.  We usually drive 4 hours to go to be with our families anyway, I'd rather go on that drive there and back in somewhat relative comfort.

Update:

Bone scan and the CT scan were clear! Nothing
anywhere else unless there's a cell or more floating around looking for a
place to land and start a tumor. Doctors still want to do chemo since
that may be the case being one of the lymph nodes involved showed it
had broke through the wall. I had 3 of 15 lymph nodes test positive for
cancer.

Saw the medical oncologist on Monday, November 3rd. I'll
have an echo on the 20th then and a port placement on the 21st. Then my
first chemo treatment will be December 1st. I'll have 4 treatments (1
every 2 weeks) of AC (doxorubicin and cyclophosphamide) and then 12
weeks of Paclitaxel aka Taxol.

I will have to take the Nuelasta shot as well.

The talk of Radiation was thrown in there but not sure how many rounds.

Then take the hormone blocking pill for 10 years he said.

So I'll actually be joining in the December Chemo group. I am not looking forward to being bald in winter. lol

Liwi

Kiwi the port worked fine the day after surgery.  I was a bit nervous about it but would have had more anxiety about waiting until the following week to start.  The nurse used some type of numbing process so I didn't feel much at all.

enlm20Erica

Hi Laura, welcome to the thread! I start chemo Nov 17 and can relate to wanting to wait til after the holiday, but I'm hoping I will feel okay by Thanksgiving Day, we'll see. It's unfortunate any of us have to be here but I'm glad you came to this thread, we can help each other along the way. Hope everything goes well with your scans, you're in my prayers. 

amylsp

Definitively experienced the steroid crash yesterday afternoon! Stayed in bed watching movies on my iPad most of the afternoon and evening. We'll see how it goes today. I'm happy I haven't had any nausea yet. Just wish my indigestion would ease up.

Leslienva

What kind of Claritin should I be taking? Claritin or Claritin D? 12 or 24 hour? I start chemo tomorrow morning.

Thanks!

enlm20Erica

amy, sorry about the indigestion. .hope it eases up on you. Glad to hear there's no nausea, many said that its the worst. How is the mouthwash working for you? I hope today will be better than yesterday... minimal to no SEs. Congrats on getting your first chemo session over and done!

amylsp

Thanks Erica!  So far I feel better today than yesterday.  Still significantly fatigued though.  The mouthwash seems to be working pretty good.  No mouth sores, and just a bit of sticky mouth. 

lisa137

Leslienva, you want the regular Claritin, 24 hour, not the D.

Leslienva

Thanks Lisa!

Astarte

Thank you for your helpful post Lisa. 

I was diagnosed with IDC stage IIB, and it is her2+. I was diagnosed two weeks ago. I am overwhelmed with information and emotions. I had my port put in this past Monday. I was put under general anesthesia thankfully and they did a core biopsy of a suspicious lymph node and put a clip in my boob all at the same time. The only issue with the port is my son kicking it. I should be starting chemo mid-November. 

I am trying to get admitted to a clinical study. I go tomorrow for a full day of testing: MRI, ct scan, pet scan, and another dreaded core biopsy. The biopsies are the worst for me. The treatment plan is chemo first, followed by they think a lumpectomy (mastectomy is ok if I need it), then radiation. After that there is some kind of therapy for one year due to the her2+ status. But they said it wouldn't make me sick.

I have a one year old son. I'm married, but my husband is not much help emotionally, financially, only does things if I nag. I have wonderful parents wjo live next door and help with my son and feed both of us. 

I am going to do all I can to work while going through this. I have a desk job, but it is stressful. I have been feeling sick since I got pregnant, over two years ago now. So I am looking forward to finally feeling better! I hope this group is active, I look forward to being able to share stories with people going through the same/similar situations. 

enlm20Erica

Astarte, we're happy to have you on this thread and yes its very active: ) Our goal is to help each other along the way, sharing our experiences during this very tough time in all our lives. Since I've joined the site I can honestly say that it has helped me so much, I would be lost if it wasn't for all the ladies who've been where I'm going and those who are where I am now. From experience i can say husbands and others just don't understand how this affects all aspects of our lives. So its good to come here and talk about anything, ask any question, inspire someone, get inspired because we all "get it". 

Liwi

Amy glad you are feeling better today.  I still have had periods of fatigue particularly in afternoons over a week after my infusion.  Also indigestion off and on and have tried to eat frequent small portions and more protein.  I've also tried chewing a few fennel seeds after I eat and drinking ginger tea which seems to help.   My daughter got me some great ginger snap cookies too!

Astarte good luck with all your tests tomorrow.  It sound pretty overwhelming, but I think it will be good to get it all over with in one day.   

I'm feeling better since starting the antibiotic for my urine infection when my white blood cell count was low last Friday.  Hope all is ok for my next scheduled infusion Thursday so I can stay on the recommended schedule.    

knittingPT

Hi all!  I'm just joining you.  I had my port put in about a week ago and start chemo this coming Thursday.  Liwi, I'm doing the same plan as you.  4 cycles of A/C every other week and then 12 weeks of taxol.    

Laura, we put off my start date a week so that I can avoid Thanksgiving and Christmas and they will be on "off" weeks for me.  My onc said that a one week wait was okay.  So, definitely ask. Maybe you can put yours off until after Thanksgiving. 

kiwi, the port placement wasn't bad for me.  They did "conscious sedation" where I was awake but sleepy and didn't really feel a whole lot.  Afterward, I had some soreness for a few days that tylenol was able to handle.  I found that I couldn't walk fast, though, because when I swung my arm back, there was some pulling.  Everyone at work was teasing me because I usually walk "like a tornado" and was more like a turtle for a couple of days.  Now it is only tender when I poke at it (to see if it is still tender! Why do we do those kinds of things?)

I am thankful to have this board to see what others are going through and to share my experience with other people in the trenches.  Now LET'S GO KICK CANCER'S ASS!  

enlm20Erica

knittingPT, love your spirit! welcome to the crew even tho I wish no one had to be here, I'm glad we have a place to share, learn, and support one another. I hope your first round of chemo goes smoothly with minimum or even better No side effects! 

kerker65

Hi everyone , I haven't been here long but I have found a wealth of information from this site. I got my onco type back on Thursday , it was 26, start chemo on Wednesday . Not gonna lie, I'm terrified! I am really freaked out about all this and am just waiting for the moment when it all hits me and I can't handle it. So far, so good. Please keep me in your prayers, as you all will be in mine. 

enlm20Erica

kerker65, welcome to the thread! I hope chemo goes well for you on Wednesday, there's alot of tips you can find on previous posts from this thread and others from ladies giving tips on how to minimize the side effects from chemo, and many say that it will be over before you know it...so hang in there! you are in my prayers. Please let us know how everything goes. (((Hugs)))

knittingPT

kerker65, I go through periods of complete calm/clarity and then it all falls apart and I'm an anxious wreck.  I am finding at work that it takes me about 10 tries to type a sentence because my brain is just churning in the background even if I don't think that I'm thinking about chemo.     And it is exhausting.  I'm hoping that once we get started and have a routine/understanding of how the chemo affects us that it won't be as anxiety provoking.    What is your chemo schedule like?  Are you doing every other week? 

Astarte, I agree with you about the core biopsy.  My first one was absolutely horrible.  I was all anxious before my second one for my lymph node and it was smooth sailing. No pain at all during and very little after.  All that worrying for nothing.  I keep telling myself not to worry about any of it because it doesn't help but I can't always seem to stop myself.  I hope all of your tests went well and that you are able to get into the trial. We are on a similar plan (chemo, then sx, then radiation).  I'm her2negative so I'll be doing hormone therapy at the end instead of herceptin.  Hopefully your hubby will step up and be some more help.  If not, we've all got your back!

Nik1966

Hi Everyone.  Port placement went well.  I was slightly sedated and it took about an hour.  I am walking around like a turtle now knittingPT.  I get what you mean - lucky I work at home and there is no one to laugh at me other than my Hubby, two kids and my dog.

kerker65 we're all terrified, but I think once we start treatment then it just has to get better.  I have been living on my nerves for months now, and it has definitely taken it's toll.  Chemo starts tomorrow morning.  I had the results of all my scans yesterday and they were ALL CLEAR!  I am so relieved, as my tumour was large and there was a lot of lymph node involvement.  I will have chemo 6 influsions then 25 Radiation treatments, then hormone treatment.  So far there doesn't seem to be much difference in treatment between the US and New Zealand, which is encouraging as we don't pay for our healthcare.

amylsp

Good Luck with your Chemo tomorrow Kiwi!  I've been feeling slowly better each day.  Evenings have been the worst for the fatigue and indigestion.  Just make sure to give yourself a few days to veg out.

knittingPT

Kiwi, I'm glad your port placement went well!  I just realized that your signature says you've already had a mastectomy so that port probably didn't feel like much :-)  My port has been my "biggest" procedure yet.  I'm getting chemo first in hopes that they can get better margins for the surgery!  So glad all your scans were clear.  It is such a relief to get some GOOD news, isn't it?  I'll be thinking about you tomorrow and can't wait to hear all about it.  Mine is coming on Thursday and these last few days of waiting are driving me crazy!!

Amy, I hope that everything continues to get better as the days go on and that your indigestion is under control.  When you say fatigue, how bad is it? That is one of my worries.  I work with small kids and they require so much energy from me.  I'm going to be limiting my patient load to infants starting this week so that I don't have to do as much running/lifting but I will still have to be animated to keep them happy.  I'm doing chemo on Thursdays, will work on Fridays and then have Sat, Sun, Mon off.  I'm hoping that the "worst" happens over the weekends and will be tolerable again by the time I have to go to work on Tuesdays.  If not, disability here I come!  I'm terrible at sitting still/being still so my treatment team agreed that I should try my best to keep working.  We'll see how it goes.  

Astarte did you find out anything about the clinical trial yet? 

Is anyone doing Neulasta shots along with chemo?  

Nik1966

Knitting, it was a toss up whether to do chemo first or the mastectomy.  I had the surgery on 19 September, and coped really well,  I was driving 5 days after. I will let you know all the nitty gritty about the chemo.  My Oncologist called it the weed killer - I will try and visualise that :-)

I was so so glad to hear some good news as up until yesterday it was ALL bad.  

Amy I do hope that you're feeling at least a little better xoxo

So pleased to be part of this group.

Leslienva

I had my first taxotere/cytoxan treatment today. I'm also cold capping, which was the hardest part because we had to bring in dry ice in two big coolers, then change the caps every 20 minutes. During the taxotere infusion, I used the elastagel mitts and booties. The booties were fine but I had to keep taking the mitts off because they were painfully cold. Otherwise, everything went well. I go back for the neulasta shot tomorrow. I'll be sure to take the Claritin!

Leslie

knittingPT

Leslie, brrrrrrrr.  I don't think I could do the cold cap/mittens/boots.  Good for you for having that strength.  Please let me know how the Neulasta shot goes tomorrow.   Every little detail.   Are you taking the Claritin before the shot?  My doctor mentioned taking tylenol and Claritin but I think I zoned out about then.  I'll have time to ask on Thursday during chemo.  UGH.  I'm so ready to get started!

WinningSoFar

I'm dropping in to give some encouragement.  The only thing I'd add to the great lists of things to prepare is a pillow to take to chemo.  They have pillows there, but I really like my down filled pillow and I'm short, so the chair doesn't fit me so well.  

For those of you getting ports, you are going to love your port.  I can't even remember having the port placed, it was such a nonevent.  Everytime the nurse accesses your port, you are going to raise your eyes heavenward and say 'thank God I got a port'.  Really.

I never had a minute of nausea until I was taken off Emend (anti-nausea drug administered by infusion before chemo).  It's a complicated story, but had to do with the trial I was on.  Then, I relied on Zofran, compazine and some other drugs.  As soon as they let me have the Emend, no nausea.  It may not be the drug for everyone, but when you find what works, stick with it.  

Another thing--don't assume you're going to have horrible side effects.  Some do, but a lot of people breeze through chemo, believe it or not.  The fatigue takes some time to develop and I knew women who never felt any fatigue.  

Be prepared for chemo, but hopefully, a lot of your preparations won't be necessary. 

Liwi

Knitting PT I am having Neulasta injections the day after my first 4 A/C treatments.   No side effects from the first injection.  I've been taking Claritin.   Also a friend who went through chemo last year told me it would be good to walk a lot after the injection so I've been walking each morning when my energy level is high.   During all my pre treatment time of appointments and procedures I hadn't been exercising so it feels good and I'm trying to gradually increase the pace and distance.

Leslienva

I'm now having hiccups and indigestion so I took a Tagamet. Maybe from drinking too much water! I only had chicken soup and a roll for dinner. Trying to eat light.