October 2013 Chemotherapy

Pam358

Deb I will be doing AC first as well. Someone else mentioned ports in the arm too, but I hadn't heard of them.  I've heard of some other things like PICC lines in the arms. I did read that someone asked their medical professionals and they were not aware of them.  Maybe some areas are trying them out. Here's hoping your veins will tough it out and be OK and you won't need anything else!

Jaybird26

Hello Ladies,

I will be starting with DD AC then DD T. 8 treatments over 16 weeks and then 6 weeks of radiation. I start October 2. Will get a port because I don't want any damage to my veins. Never heard of one in the arm.

I am extremely scared, anxious, and angry. I have been trying to lead my normal everyday life but my cancer always sneaks into my thoughts. I keep on reminding myself that the sooner I start the sooner I will be done.

Today I had to sit my 9 yr old son down and tell him that I have cancer. It was one of the hardest things I have ever done. To watch his eyes well up with tears was heart wrenching.I made sure to use proper words and keep my composure in front of him. He has asked me several times already if the chemo was definitely going to work because he didn't want anyone else in his family to die. Yes treatment sucks but today was very difficult for me. Good night. Sweet dreams.

Kellee318

Jaybird, I am pretty sure I'm going to be traveling the same journey as you. I'm hoping to start in October as well. I am also very anxious to get started. I can't imagine having to tell your son...my kids are all grown up. (((Hugs)))

ML40

Hi ladies, hope everyone was able to have a good weekend. I am scared and anxious about starting chemo but keeping busy and trying to enjoy life as much as possible. I went out and bought some of the suggested items for the chemo bag. Even though I had a cold I was determined to not miss a wine festival last night and had a great time salsa dancing with my husband. I forgot about my cold & cancer for a few hours.

I am getting a port for the same reasons as Pam I also had my right arm lymph nodes removed so I'm at a greater risk for lymphedema in my right arm so one way to decrease that risk a little is not to use that arm for treatment. Has anyone tried acupuncture? The cancer center here offers acupuncture so I have signed to try it a couple of days after chemo next week. The countdown for me begins, one week till I have my TCH cocktail at the chemo bar. I'm not excited but the nurses at the treatment center gave my husband & I some advice that we are going to do. On chemo day, do something special or make it a day you can look forward to instead of chemo. They gave us ideas like a spa day or getting something special. I love the beach and have always wanted a Pandora bracelet so on my chemo days I will start off at the beach and buy a pandora bracelet and add beads every treatment. I am looking forward to starting my day at the beach & starting a pandora bracelet on the 30th.

Pam358

Jaybird - I will be following your path, just one week later. I can't imagine how difficult the cancer talk was with your son. Sounds like you did a great job since he feels comfortable coming back to you with more questions.



Welcome Kellee - glad you found us, but sorry you have to be here.



ML40 glad to hear you had a great time at the Wine Festival, it sounded like fun. The B & B day (beach and bracelet/bead) prior to chemo sounds like a great idea. I love my Pandora bracelet! Maybe you can think of it as a celebration of life bracelet! I know when I've worn mine these last few weeks it reminds me what I'm fighting for.

AmyQ

Hi Ladies,

I just want to lend you support and send prayers your way. I was in your shoes just a few short months ago and clearly recall the worry and anxiety but happily finished up 3 weeks and 1 less chemo early so maybe you too will be lucky!



I kept a daily journal tracking my emotional as well as physical feelings which seemed to help with upcoming treatments. Surprisingly my side effects were exactly the same week to week and treatment to treatment with the exception of my fourth. I also kept track of foods I ate and what tasted good.



Lastly, I started out each treatment focusing on one down...five to go...then two down four to go etc. That helped me from feeling overwhelmed with the number of months I was getting treatments. It was much less daunting that way. Before you know it, you too will have chemo behind you and very grateful it's over!



Best wishes to all of you and sending healing prayers that your treatments kill the cancer!

ML40

Jaybird {{HUGS}} telling my children who are older (20 &17) was the hardest thing I had to do and I can't imagine telling them if they were younger.

Pam- I like the phrase B&B day

Keele- sorry you have to join us but found this to be so helpful

Amy Q thank you for your words of wisdom

Macy187833

Hi ladies,

I guess I get to join too. My start date is 10/10 and will get my port put in the day before. I hate the iv...it hurts like nothing else! It's nice to meet all of you. I'm 43 so I am so glad there are other women here in their 40s. I feel too young for all this, don't you?

@Pam--thank you for starting this thread! 

@Debdylan--I'm terrified too. In fact, that is my predominant emotion most of the time. I don't want to do this. 

@ml40--your picture looks lovely! I also have children about the same age as yours. 

(((hugs))) to all here. 

Pam358

Macy - welcome to the group everyone wishes they didn't have to join. Since we are here we'll try to make the best of it and get through it together. I too am not a fan of IV's. I already used mine for a CT Scan with contrast and it went well!

Pam358

Deb - I've also read that it is better if you stay on top of your nausea and don't let it get ahead of you.  Take your anti-nausea meds on a schedule as it can be worse if you are trying to catch up to it.

AmyQ - thanks for the support.

ML40 {{hugs}} to you too for having to tell your kids - like this stuff isn't tough enough.

lgkgde13

PET is done....now just waiting for results and start date.

AmyQ - thanks for lending your support to this group

Jaybird26 - I know exactly how you are feeling hugs to you!  we had to tell my 7 and 8 yr old and to see them upset and crying is terrible. It is always hard to know what to tell them and how much to tell them.  My stepdaughter esp took it hard that I will lose my hair.  That was her first words when we told her about the cancer...are you going to lose your hair?  she doesn't want me to look different...that has been the hardest part for her.  Already have my wig ready so it can be a bit easier maybe for them?

Jaybird26

Hello Ladies,

  I wanted to tell all of you that you should see your dentist before you start the chemotherapy. It is good to have xrays, a cleaning, and other issues resolved prior since our immune systems will be compromised during the chemo. I saw mine today. He also did a test with a velscope to check for any issues in my mouth in the way of cancer. He also gave me a bunch of Biotene samples stating they are very good for the dry mouth that chemo causes.

 Tomorrow is my port placement. I know people say it is not too bad but of course I am still anxious. I will fill you in tomorrow. My son is very upset. Spoke to counselors at school today. I wish there was an easier way for all of us. I hope everyone has a nice evening!!!!

Pam358

Lgk - saying a prayer that they don't find anything in the PET Scan



Jaybird - good suggestion about the dentist. I did read that somewhere and have made my visits. It made me laugh given the upcoming chemo and radiation when they brought the lead apron out to put on me when I had my two x~rays. Good luck with your port placement!

Gramof2boys

Looks like I'll be joining the October group also:(. I see a surgeon on Weds.for my port and then meet back with my MO on Oct.2 for follow up and set start date. I'm worried about the hair loss too. I will start with Taxol first,weekly for 12 weeks,then surgery and maybe AC(not sure)then rads.

LiLi1964

Hello Ladies,

I see some very familiar names from the August 2013 Surgery group - I'm hopping in here even though I start my chemo on 9/26.  So late in Sept and the Sept thread is filled with a slew of what everyone has gone thru (some started their chemo in August) already that I've not even read much because "i don't want to know" - I'll find out on my own in a few days.  Hope you don't mind if I hang out here and go thru the journey with you.

I have my PET Scan and EKG tomorrow.  Chemo on Thursday.  I'll keep you updated on how things progress.

LiLi1964

Update after reading most of the posts: 

DebDylan – I will also be going the AC route.  I hear it’s tough…..but aren’t they all in their own way?  The Adriamycin is actually known as the “red devil” (you pee red afterward – ow!) 

Regarding a port – the one in the arm is a PICC line.  It is partially exposed and needs daily flushing…..  I’m like you – I was adamant I would not have anything else done to my chest and I have good veins so chemo can be done that way.  However. Adriamycin can be very hard on the veins and I may need to change my decision.  Based on the info I got from MO today, I’m not interested in a PICC line to take care of for the next 4 months – I’ll just let them put in the darn port in the chest and be done with it.  Talk to your doctors and find out what each is about. 

By the way – we start together.  Both on 9/26.  I get blood draw at 8:10, see MO, Chemo to start at 9:15 and was told I should be out of there by 1:00.  We can compare notes (if/when we feel well enough to post) – I’ll be thinking of you!!!

Pam358

Gramof2boys - welcome to the group, glad you found us but sorry you have to be here at all. Hoping everything goes really well Wed with your port.



Lisa - glad to have you here. Even though you have a Sept start date you are more than welcome to jump in here. Best of luck with your PET Scan (may it be cancer free)and with the EKG.

Jaybird26

Hello Ladies:

Hi to all the new names I see. Let's stay strong and be there for each other. I believe some burdens are lightened with good support.

My port is in. Yea. Another thing off my list. Wasn't bad at all. Was awake the whole time and joking with the md and nurses. Some aches now. If anyone has any questions I may be able to answer send me a message. One more week until chemotherapy starts with a long list of things to get done. I hope all of you are well.

Pam358

Jaybird - so glad to hear your port placement went well. Best of luck getting your list completed!

Pam358

Travlmom - sorry I missed your post the other day.  Welcome to the October group, I'm glad you found us. I hope your appt with your MO today was helpful and informative.  The conference at Disney sounds wonderful - it's a wonderful place.  I think "ears" to wear during treatment are  a great idea and how sweet that your co-worker had some made special for you! Very thoughtful.

LiLi1964 (Lisa) and DebDylan - best of luck with the start of your chemo tomorrow.  May your side effects be minimal and manageable, and your anxiety be relieved once the "first" is over!!

I did some online shopping for head gear today (some scarves) and a friend of mine made me a knitted hat and wants to make more. Because scarves are something I haven't worn before I think it's more difficult to shop online -(I've got an idea what a shirt would look like, etc) I did also order a couple fleece hats.  Just a tip - check out the sale/clearance at places like Land's End/LLBean if looking for cheap winter hats. I found a couple for under $3.97  I'm sure part of my lack of shopping enthusiasm is that I don't want to be looking for stuff to cover my upcoming bald head - I'd prefer my own hair to be covering it 

I received a letter in the mail yesterday that the Board of Education at my school has approved my medical leave of absence for "approximately the 2013-2014 school year".  I don't get paid after I use all my sick days, but I keep my same job so I can go back when I'm ready.  I love that it's flexible - could be until spring if all goes well after chemo and radiation but if I need the whole school year and to return next September that is an option as well. My Principal has been very supportive.

Gramof2boys

Pam358-I will look for hats too, thanks for the info. I have never worn anything on my head. I am very nervous as to what I will do, I am going to continue working if it allows. I met with surgeon today and port will be placed Tues. I then see MO on Weds and hope my treatments start Friday or the next week. I am soooo ready to get this started.

Julie

TeamKim

Hi sister warriors --



I was just thinking that I should start an Oct. chemo thread (been reading sept) and Lo and behold, we already have one! I will be starting my chemo -- 4 treatments on Oct. 11. TC every three weeks. Hoping to work through it with minimal time off.... We'll see. I am a professor, so it's hard to just not be there for class.



If any of you are having TC regimen, there is another helpful thread on BCO -- Cytoxan/Taxotere.... It is dated sometime last year, but was edited to extend to everyone on that protocol. Lots of good info.



I am seeing a few names I recognize from the Lumpies thread -- we are all moving closer to DONE. I will finish chemo by Christmas, then start rads in January.



Sending lots of ((((hugs)))) to all of you who start in the next week. Keep us posted how you are doing, and know we are in your pockets all the way!

travlmom

Pam - congrats on the medical leave approval!

So I met with my MO and also gained a cardiologist! Yeah me.  I start TCH (taxotere, carboplatin and herceptin) on October 9th.  I will have 6 treatments every 3 weeks.  Good news is my heart is healthy.  It was nice to pass a test for once!  

I will be doing my chemo mix at the UH Hospital Main Campus and my weekly herceptin and the neulasta shot at the regional center one block from my house. On Monday, I went to a local cancer support center that is 30 minutes from my house. They have some fabulous programs there and was fitted with a free wig. They did not have a lot of options but I took one to have on hand.  Tonight I went to a support group at the regional center and they have a lot of the same programs for free and they have new Paula Young wigs for free!  So I will go and see what they have and return the other one.

I am ready to get this going ~ let's kick this!

Pam358

Julie - it sounds like things are moving along next week with the port placement and the MO appt. We will all try to send positive vibes/energy/prayers your way so they start the chemo really soon too! Good luck with the hat search. Guess it's not just something you wear in a sleet storm once a year. We'll figure it out!



Deb - I hope the infection doesn't hold you back from your start date since you want to get going.



Travlmom - happy to read you have a healthy heart despite gaining yet another medical professional on your team. It's best to leave the Cardiologist on the bench and hope they don't have to join the game. That's nice that you can do the Herceptin and Neulasta so close to home. I live in a rural area and I'm happy that I get to travel just 30 minutes for my chemo because it will be a little over an hour for daily rads in a few months.



TeamKim - welcome to the October group, glad you found us! I've been reading the Sept thread as well and it's been helpful. You will be starting your chemo just a couple days after me. I hope you find a wig at the regional center that fits your style!

I love your saying "We are in your pocket all the way."

LiLi1964

DebDylan - well, this is it.  Our last night of "normal" life before the unknown.  I'm still nervous but strangely enough, not as bad as I had been.  I'm to the point of "let's just get this first time done and over with" and take it from there.  Get one down and 7 to go - one day at a time.

I didn't get my results of PET scan or EKG - I guess I'll find out in the morning before chemo starts.  No big surprise....we've all gotten pretty used to waiting, and waiting, and waiting.....

Staying up late tonight.  Told my husband when he said "let's get to bed, tomorrows going to be a long day" that I'm not interested in getting a good nights sleep.  See, my intention is to sleep during chemo (may be niave of me but it's my plan) so I want to be tired going into it for my plan to work.

Drank a lot of fluids today to get my veins all pumped up.  We'll see if I did a good job or not tomorrow.  If I didn't, then I have a problem because I've run to the bathroom so much today to pee it was pathetic (and I'll be doing the same afterward to flush the drugs out).  Lots of potty time in my future, I think.

I do hope you are able to get started tomorrow.  I, too, have a small infection going on but nothing I believe will cause any delay (but what do I know?  I've never done this before!).  Having finally reached our start date it would really stink to have it held up - but being healthy (I guess that's a relative term all things considered) is important to get us thru this next phase.

May God bless you with a calm and uneventful therapy tomorrow!  Post when you can; I'll do the same. 

My thoughts and prayers to all - sorry for not catching up and responding to all other posts but I've been attempting to get updates on my laptop most of the night (I keep losing my wireless connection on the laptop and it's driving me crazy!).  I'll bring my laptop w/me tomorrow and if napping doesn't happen, I'll catch up on everything during chemo - that should keep me busy! Thankfully they have free wi-fi at the cancer center! 

lgkgde13

DebDylan - I will be thinking of you today and praying for no SEs.

Pam - so great that your work has been flexible.  Mine has been as well and it has really made it alot easier on me.

Onc called me with PET results.  Sarcoid in lungs and lymph light up as expected and the one nodule was "colder" which she felt was a good thing and very high prob of being nothing considering my nodes were clear.  It is too hard to biopsy b/c it is so small so we just need to follow it.  I start A/C treatment on Tuesday but prior to that I need ECHO on Monday...all these tests make me crazy

Thinking about everyone

Pam358

lgkgde - sounds like the PET scan didn't have any surprises so that's good.  I understand the idea that the "tests can make you crazy".

Deb - So glad to hear your first treatment was anticlimatic for you! I hope the SE are minimal if they have to make an appearance at all.  The nurse at my MO office told me that they don't have  very many people with harsh side effects from the neulasta, she was guessing at less than 10%.  She said there is a middle group that take aleve or ibuprofen but just describe it as achy and it doesn't interfere with life too much.  I asked about taking Claritin as others have suggested just in case, but we'll see how I feel about it in a couple of weeks.

Actually - the time waiting for chemo hasn't been bad at all. Fall is my favorite time of the year and the weather has been beautiful. I felt really good this week and I am enjoying every day knowing that these two weeks are the calm before the storm hits again - (chemo, appts, neulasta, SE)

Jaybird26

Ok Ladies I was just informed that my oncotype dx can back with a low score of 8. Even though the cancer was found in my lymph nodes I have the option of not getting Chemotherapy. My question is do people consider not going through with Chemo with positive nodes. My thought is how do you know what is brewing in your body. I had 2 nodes removed with one positive. Do the side effects of the chemo outway the risk of spreading. But tamoxifen will help with that. ??????  Either way I am confused and worried. The standard of practice was to always have chemo with any positive nodes. Anyone have any opinions? Thank you

LiLi1964

Well, no chemo for me today – all the prep mentally and physically….all put on hold.

The PET Scan is picking something up in the right nodes (this is the side where my sentinel node tested positive but was though to be "incidental").  There is definitely something going on there as it lit up quite clearly on the scan.  The problem is this - the PET Scan cannot tell you if it is showing increased cell activity because of cancer or from inflammation.  Because I had a very long recovery, they say it is possible it is still inflamed; however, everyone (Radiologist, Breast Surgeon, Oncologist, and Radiology Oncologist) are in agreement that the PET Scan is concerning.  My MO did not want to proceed with anything until we get a better grasp on what might be going on.

I was sent from the UW Carbone Cancer Center over to another clinic to get an immediate ultrasound - the thought being an ultrasound might give us more info if this was inflammation vs cancer; no such luck - at least not as I sit here right now (the Breast Surgeon and Oncologist were to meet this afternoon to discuss further).  Radiologist was encouraged to see that at least the large node they could get a good pic of shows "fatty" type tissue whereas it wouldn't necessarily look that way if it was cancer.  Key word...necessarily.  She simply cannot determine.  After the US was taken she spent quite a bit of time on the phone w/other doctors on my medical team to determine what the best course of action is to be.  From when I left the clinic....we are simply going to move ahead w/chemo and not biopsy this area at this time.  IF it is cancer, chemo will shrink it and I'll have lymph node dissection surgery after my chemo (in 4-5 months).  They will do a follow up ultrasound in 3 months to look at nodes to determine if they shrunk (meaning they ARE cancer) and then surgery to remove OR if they look the same...then we'll know it was just continued inflammation from surgery.

OK - EKG also showed concerns (I swear this never ends!).  The normal output for the heart is 50-75%.  Mine is at 50%; therefore it could be very dangerous to use the chemo regimen we had planned for the aggressiveness of my cancer.  I may still be able to if the Cardiologist deems he can have me take sufficient medications to protect my heart from the Adriamycin.  I see the Cardiologist on Wednesday - apparently all decisions regarding how/what chemo will be used will be determined after meeting w/him.  They do have an alternative chemo drug they can use that does not weaken the heart muscle; it's just not as effective as the Adriamycin.  This is how it was put to me:  We don't want to cure you of cancer just to have you die of a heart attack.  Yeah, what can you say to that?  FYI - she also said the 50% could be simply "my makeup - that's what it's always been and we only know about it now because we checked it prior to starting chemo".  So this is all very "up in the air" to me........I just am following what I'm being directed to do.  I meet w/Oncologist again next Thurs bright and early and will find out how we proceed at that time.

So very tiring day and not what I wanted to hear or deal with.  But it is what it is and like it is always said….one day at a time. 

I’ll spend some time this evening catching up on other posts – I just wanted to let everyone know what happened (and what did not happen) today for me.  

Hope everyone is doing well!

Kellee318

I'm really new to all this but thought that positive nodes meant chemo.  I am not sure I'd be comfortable foregoing the chemo but rely pretty heavily on medical people to know a whole lot more than I do about this stuff.  I'll be thinking of you, Jaybird, as you go through this.

Lisa...I really hope that they can make a determination about what's going on.  Thinking of you too!

I had a great appointment with my med onc today and feel so much better than I did with the one I fired!  I have my ECG on Monday, CT scan on Thursday and they're calling me tomorrow with an appointment for my port!  I'm really happy to have things moving along quickly.  My dh is having surgery on Tuesday and will be in the hospital overnight so it's going to be a busy week!

I have a question...I don't know if any of you can answer it or not.  My HER2 is 2+....they asked me today to take part in the B-47 study.  Half of the participants get Herceptin.  Because I'm not considered positive I wouldn't get it if I didn't take part in the study.  Do any of you have any advice either way about it? 

Kellee