Chemo Starting on June 7 - questions and comments |
Post Reply 
|
Page 123> |
| Author | |
tracyinva 
Senior Member 
Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
 Post Options
 Thanks(0)
 Quote Reply
 Topic: Chemo Starting on June 7 - questions and commentsPosted: Jun 01 2013 at 1:32am |
|
Hi there,
I am brca negative on both and have a 3cm tumor by now I suppose. Its been a month now since i was diagnosed biopsed, lab work, mri's and next week EKG and then medport with Chemo next Friday. I am so scared of what I can take. I got a chock full of meds I picked up today Anyways, the other fun part I picked up my meds. I guess these are standard. Hydrocodone Compazine Dexamethasone Ativan Lidcocane for my port I guess that's the normal stuff. My question is that once they start the chemo and with this type of cancer if the chemo is working will I be able tell a difference after one treatment in the size of the tumor if it's responding well. They gave me so many anti nausea meds and I just watched a you tube how a woman died from her 2nd chemo from pneumonia . This stuff scares me more and more as I get closer to me first chemo day. |
|
 |
|
|
Natalie
Senior Member
Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 2:34am |
|
Tracy,
Sorry you got diagnosed with this monster, but very glad you founfd us. Thisd site is so full of knowledgable people that you can come here for absolutely anything from ranting, crying to joyful things.
Honey please take one step at a time for your own sanity. First off? Please please please stay away from google, it really will truely only make you nuts. ZTry to stay in the momment, I know how hard it is. So many of us here have done the very same thing at first, so take it from experience. The steroids are for I believe to keep you feeling alright & hopefully your appetite. Ativan for your nerves when you feel that anxiety that is so common. Anti nausea? Take it, it really will help, and if you find they aren'tworking speak to your Onc or the nurse practioner where you get your tratments they can change them up they do help a lot. We all wound up with what seemed a box full of meds vials. You will find that you wind up with things that didn't work and just sitting there. That youtube video you saw? No doubt if real, a very rare occurance. Still scarey I know. People have gotten both chemo before and chemo after surgery, just depends on the doctors and your wishes as a team. The Chemo is doable, do you know what chemo you will be getting? Most of us have had the standard of ACT ( Adrimyocin, Cytoxin, Taxol) or TAC ( same meds but just Taxol first) If you take care of yourself, pay attention to your own body, speak to your doctors about anything that is differrent going on with you, you can stay in front of just about anything that goes on. May I make one suggestion if you have not sone it already? Go to your dentist and get a really good cleaning and any work that might need done. I found that my dentist and many others do not want to work on us during treatment. Our bodies are going through so much and it can react to things differently. I found I was and still am more sensitive to pain and a bit slower in recovering from even novicane uggg. Your dentist can also guide you in your oral care with suggestions. Mine reccomended a gentle hydrating mouth wash to use alomng with flouride treatments. Chemo can be rough on our teeth. Some girls here used Claritan before treatments to lessen some side effects. Sorry if I am jumping around, just a bit of Chemo brain. Many women have felt a difference in tumor size after only a couple of treatments. I guess it depends on whether you or the doctors can feel it well, but don't get discouraged sometimes you might now feel like it is but it really is shrinking. Doing chemo before does have an advantage, if the tumor is not responding then they can change out chemo for one that will kick its butt. Be good to yourself, and accept help from anyone that offers or even just ask for it. I had it every 2 weeks, felt fine the day of a bit cruddy the next day worse the third and fouth day and started to bounce back after that. Everyone is differrent. Natalie |
|
|
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
|
|
|
|
|
TriplePositiveGirl
Senior Member
Joined: Oct 07 2010 Location: Los Angeles, CA Status: Offline Points: 667 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 4:03pm |
|
Hi Tracy,
As Natalie said, chemo is very doable. It is much scarier sounding than the reality of what it is. I was fortunate that the main side effect I had was fatigue. I really didn't have any issues with nausea. One thing I would suggest (and I am sure others will agree) - the pre-meds that you will be given prior to your infusion can cause constipation. It is highly advisable to get a stool softener of some kind. My doctor gave me a prescription for ducolax (spelling?). I'm sure the gals on this forum can recommend other things that have worked for them too. Chemo also has a "cumulative" affect on the body; meaning you will probably feel fine through the first few cycles, then as time goes on, you may experience more fatigue and other side effects. This is normal. I know that by the end of my chemo treatments I was pretty fatigued and glad to be finished. It sounds like you have all your ducks in a row. Just take it a day at a time and get your rest. You will get to the other side, sooner than later. Best Wishes, Lisa
|
|
|
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
|
|
|
|
|
Lillie
Senior Member
Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 4:23pm |
|
Hi Tracy,
Natalie and Lisa have just given you "so much" good advice. I can only re-iterate.... Stay away from you-tube and google, it will only drag you down. You need to approach this journey with a positive "I Can Do This" attitude. Our mental state plays a huge part in how well we handle things. ALSO:.... Constipation; Stay ahead of it. Don't wait for it to happen. Go ahead and take stool softner, warm prune juice or whatever whenever you start treatment.
You do have your ducks in a row..... One Day At a Time Sweetie and keep us posted. WE UNDERSTAND.
God Bless,
Lillie
|
|
|
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
|
|
|
|
weekender09
Senior Member
Joined: Mar 29 2013 Location: United States Status: Offline Points: 135 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 6:43pm |
|
I am sorry you joined our club but we are all great resources for each other so welcome.
I have my last chemo in 6 days. YAY As each of us are different remember if while you are going through chemo you haven any questions that nothing is a dumb question and at least someone on here will know what you are going through. Stool Softener - Get these ASAP and take every single morning. It is part of my drug ritual and I still have been plagued with the worst bottom issues that have been my biggest side effect of chemo. Take an Ativan the night before chemo to rest as you will most likely be a bucket of nerves not knowing what to expect. use the triage nurse line as you go. They want you to contact them if any questions come up - I think "sheila's voice" and I are best friends. Order headwraps, scarves, hats or if you plan to do a wig get one before you start this. The hair will fall out usually around the second chemo. If you happen to get sick with the first one you don't want to be shopping for these things after. headwraps.com was a great site that I still use. They make some nice lightweight sleep caps because your head will be cold after hairloss. The other thing I would suggest is WATER WATER WATER. If you are not a big water drinker (I wasn't) find some of the slightly flavored ones etc to try. When you are nauseated is is really hard to drink it but trust me you want to flush the stuff out of your system ASAP. Lastly regarding your tumor size. I noticed a small difference at chemo 2 but by chemo 3 we could barely find it. halfway through my doctor did another PET scan and the results showed the cancer was already dissipated. I lied one last thing. Set up a caringbridge.org site. I post regularly and my people are thrilled to be able to hear how I am doing as everyone is concerned. It keeps you from having to be filling everyone in when you are tired. Use the board and good luck. Barb
|
|
|
02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13
BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :) |
|
|
|
|
tracyinva
Senior Member
Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 7:19pm |
|
What is the triage nurse line?
I got a wig already. I am worried about going on a 2 day vacation after my first chemo. It will be 5 days post chemo for 2 days The beach. I was mostly just going to relax at the indoor pool. I made the trip well before I found out about the TN. Should I be okay? Or just cancel? It's our family vacation every year. I will get the stool softener. Should I take it 6 days out already? I got biotine, tons of vitamin water to drink already, a portable water pik to keep my teeth cleaner. Is it okay to still tak multivitamins ? Another dumb question but if I chose to sleep during chemo will they wake every time the change bags? I am a nervous wreck just the med port in. |
|
|
|
|
tracyinva
Senior Member
Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 7:21pm |
|
Since I get my chemo on Friday I have to travel to the hospital the day after for the reboost. When do I take the steroids? From what I got out of orientation class it was day 4-5 after chemo when your bones hurt?
|
|
|
|
|
bookish
Newbie 
Joined: Jun 01 2013 Location: USA Status: Offline Points: 5 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 7:31pm |
|
I dreaded chemo with a Massive Dread....and it turned out to be not nearly as bad as I expected. Here's what helped me:
I was vigilant about taking the zofran/ondancetron (anti-nausea) with the result that I had NO nausea at all. Nobody believes me about this, but it's true. I should have been more vigilant about stool softeners - as your GI tract sheds lining cells, it clogs up, so you need lots of softener and water to combat that plugged-up effect. Start the softeners 2 or 3 days ahead of the infusion and continue them until about a week after your infusion, then start up again for the next infusion....or just keep them going until your last infusion is a memory. They'll give you ativan for nausea; you likely won't need it for that, but do take it for sleep at bedtime. The steroids they use make you hyper and lack of sleep does you no good. Ativan got me some badly needed sleep and I could go off it after 4 or 5 nights, after steroids were done. On hair loss, when it starts coming out in clumps in the shower, it's time to get it shaved off. Watch some YouTube videos about tying scarves. You need a minimum of 36" square to do a good tie. Buy several and then your friends and family will give you more. Lots more. I can't promise it'll happen to you....but when my hair grew back, it was much better hair than before. Nicer color, better texture, different growth patterns, the natural part even migrated to the other side of my head. I am delighted with it. Good luck as you go through chemo. The oncologists have vastly better meds than they used to have for managing side effects, so try not to worry too much before you start. It's no fun but it's do-able. Bookish |
|
|
|
|
bookish
Newbie
Joined: Jun 01 2013 Location: USA Status: Offline Points: 5 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 01 2013 at 7:43pm |
|
You had a question about triage nurses....some oncology centers call them 'nurse navigators.' Their role is to answer questions, return phone calls, reassure you, find out things for you, go to bat for you. I finished chemo in February, but I most recently called my nurse navigator to inquire if I really needed to go for a six-month checkup with the surgeon b/c everyone and his brother has seen, or will see, the area in question and I didn't see any value in yet another exam. She got me the answer, easy peasy...and it was all via telephone tag as I'm not in the house so much now that I feel so much better. Another way she helped me (a lot) is to keep on track of my prescriptions...she is the one I'd call for refills so I wouldn't run out before a weekend.
And yes, I think the infusion nurses will let you sleep while they change bags. I found I didn't care to have people accompany me to infusions as I felt an obligation to chat and entertain them, when what I really wanted to do was read magazines and catnap. Good luck!
|
|
|
|
|
weekender09
Senior Member
Joined: Mar 29 2013 Location: United States Status: Offline Points: 135 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 02 2013 at 5:01pm |
|
Go and sit on the beach. The unfortunate thing is that days 3-5 were the worst for me as far as feeling like I had a hangover and fuzzy head feeling. Take the meds and you will be fine. I don't know anything about steroids as my doctor doesn't use that protocol I only had decodron the day of chemo. Also just don't overdo it on vacation - find times to rest or you pay for it in the next week.
Yes you can sleep through chemo but basically with A (red devil) it is put manually into your port whereas the C you can sleep during the hour. It isn't that long actually that you are there for AC. Once you get to Taxol the infusion is 3+ hours. With my oncologist you should have already told them at your first visit all the medications and vitamins etc you are on. Once you start chemo you can't add anything including over the counter cold medicine until you clear it with Doctor or Triage nurse/nurse navigator. Again it is scarier thinking about it then it is having the chemo. Stay positive. Heck tell yourself you aren't gong to get sick or feel crappy and start some mind over matter. This is how I personally have managed this entire process. I am wearing my teeshirt that says Hey Cancer You Picked the Wrong Bitch. Believe in your ability to evict the beast. Barb
|
|
|
02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13
BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :) |
|
|
|
|
tracyinva
Senior Member
Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 05 2013 at 10:42pm |
|
Today I had my medport put in. Wow that was a very sleep 45 minutes. They put me up some drugged cocktail . They said it was some mix of valium and something else. I listened to 80's music while I got warmed up by nice heated baffled bed. All in all it was very easy but when I came out my monitor kept going off because I think they gave me a little too much and made me breathe a bunch of deep breaths. Anyways, I cam home and half way through the day the numbing medication wore off my left side where the port is in place. I have two ports sticking out. I dont know why. It was just a single lumen. The pain was so bad I took one of the hydrocodone which seemed to make fee a lot better. I am not going to take another unless I really need it. That really helped me. It was the kind that had actimenophen in it. So I have 2 days to sleep with the needle in me until my chemo Friday which I am still very nervous about. My port is wrapped so tight in gauze nothing is getting inside that dressing. They said it would take about 10 days to heal. One step closer to catching up to this monster inside me. Part of me wishes it was Friday already but I know my nerves will be on edge because I dont know how my body is going to react. Anyways, thats the news of the day for me.
|
|
|
|
|
tracyinva
Senior Member
Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 05 2013 at 10:57pm |
|
I just got back from a walk and going to try and relax and watch some tv before bed. Well they are saving the Taxo for the last part of my treatment. I wish it was first since I have heard so much bad stuff about the red devil. Oh well...I guess I gotta do it sometime.
|
|
|
Diagnosed 4/29
Lymph nodes clear on MRI on 5/20 2x2 statge 1 or 11A AC and T 6/9 - 9/13 final mri- no lymph 4mm or less residual Lump right side on 10/16 7 nodes taken - all clear - clean margins |
|
|
|
|
tracyinva
Senior Member
Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 05 2013 at 11:00pm |
|
https://sphotos-a.xx.fbcdn.net/hphotos-ash3/601774_10151697080779274_1396697293_n.jpg
Here is me with my port today Does anyone know why I have 2 ports coming out?
Edited by tracyinva - Jun 05 2013 at 11:02pm |
|
|
Diagnosed 4/29
Lymph nodes clear on MRI on 5/20 2x2 statge 1 or 11A AC and T 6/9 - 9/13 final mri- no lymph 4mm or less residual Lump right side on 10/16 7 nodes taken - all clear - clean margins |
|
|
|
|
Natalie
Senior Member
Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 05 2013 at 11:57pm |
|
Tracy,
I have no idea what that is, I never saw anything like that. Does anyone else know?? Good luck tomorrow. You will do fine. Pump those fluids when you get home, flush that red devil right out. Natalie
|
|
|
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
|
|
|
|
|
Natalie
Senior Member
Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 06 2013 at 12:00am |
|
Sorry I thought you were starting tomorrow. If is perfectly normal to be nervous. Once it gets started it you will more then likely get over that anticipetory anxiety. I looked at an earlier post. I didn't know what a medport loooked like.
Rest easy
|
|
|
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
|
|
|
|
|
weekender09
Senior Member
Joined: Mar 29 2013 Location: United States Status: Offline Points: 135 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 06 2013 at 12:37pm |
|
Tracy:
I found this that looks like your "port" http://breastcancer.about.com/od/chemotherapydrugs/tp/Central-Venous-Catheter.htm It is a different way to do the process then the ports you see here. Tomorrow I will be thinking of you as I have my last chemo and haven't forgotten that first day either. I have been very good at journaling this process at is affected me. Feel free to visit and look at the first chemo posts. Praying for you! B
|
|
|
02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13
BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :) |
|
|
|
|
beck
Senior Member
Joined: Nov 30 2012 Location: ILLINOIS Status: Offline Points: 276 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 06 2013 at 1:06pm |
|
as far as the beach check with your doctor about how much sun
|
|
|
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
|
|
|
|
|
tracyinva
Senior Member
Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 07 2013 at 7:38pm |
|
Chemo 1 - Over - No horrid side effects except for a semi mild migraine I have and sometimes I feel like I am sweating a bit. I know my body can tell something is off. The steroid shot felt like all pins and needles poking me all over and in the private area. The nurse gave me some Mugard also. They gave me the medicines in this order:
anti-nausea (endmed) Steroid shot cytoxan ( thats not the red one right) Andrimycin (sp - that IS the red one right?) that was just shove into me with 3 really big syringes and no drip. Heprin to flush the port and keep it from clotting Then I was done. I am trying to drink as much as I can tonight and eat a light snack. Maybe try for a walk around the neighborhood to get some fresh air. I guess I'll the rest as it comes...that's all I can do..so at least one down. At least now I am feeling I am doing something The nurse also said to take a claritin `10mg something about that helping with the WBC count. Time went by fast.
|
|
|
Diagnosed 4/29
Lymph nodes clear on MRI on 5/20 2x2 statge 1 or 11A AC and T 6/9 - 9/13 final mri- no lymph 4mm or less residual Lump right side on 10/16 7 nodes taken - all clear - clean margins |
|
|
|
|
MLindaG
Senior Member
Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 07 2013 at 9:55pm |
|
tracy, Glad one is down.........hope you are doing good tonight! Everyone is so different in how this all affects them. Just go with the flow and treat symptoms as they come up. Don't be afraid to call your onc's office with any questions.
|
|
|
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
|
|
|
|
|
2 grandsons
Newbie
Joined: May 05 2013 Location: salisbury Status: Offline Points: 26 |
Post Options
Thanks(0)
Quote Reply
Posted: Jun 07 2013 at 11:04pm |
|
I also had my first treatment Monday and I started out with no side effects but it seems like I am getting tired and sorness ass the days go by but least one down.
|
|
|
|
Topic Options
|
Post Reply
|
Page 123> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |