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Starting Chemo Monday - Trying not to freak out

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AllisonH View Drop Down
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    Posted: May 20 2017 at 9:08pm
Hi, all! I was diagnosed TN a month ago. My treatment plan is chemo, surgery, radiation. Chemo will be AC every two weeks for 4 cycles then TC every week for 12 weeks. It's taken some doing getting started with the chemo because of some other issues I had, but it's finally here.

And, I'm freaking out - quietly, in my head, anyway. I'm as ready as I can be, and I want to get started so I can be done. The actual getting chemo part is really bothering me. I'm an incredible wimp when it comes to pain. I'm sensitive or allergic to so many things, I can just imagine what chemo will do for me. If there's a weird or unusual side effect, that's the one I'll get. (Even my scientist friend who is supporting me through all of this agrees that I get the weird side effects.)

I've prepared the best I can - I have friends and family to support me. I have the extra medicines ready to go, including the gunk to put over the port to dull the pain of the needles. I've been reading posts in this forum. I've read books and websites.

I know I can't know what it's like until I've started, and I know everyone is different.

But, still. Freaking out.

When you had chemo, what do you wish you had known before starting?

Thanks.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: May 20 2017 at 11:17pm
Hello AllisonH,
Wish the best for you for your first round of chemo hope all goes well for you.The first chemo is the worst as far as anxiety goes it's the unknown of what to expect, that is normal for all of us.Hope you have no side effects and breeze through it,I had act chemo every three weeks had no reactions and did not get sick even once.The one think I wished I had known before chemo was to control my anxiety but that is impossible.Good Luck before you know it your chemo will be done and over with!
Hug's
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 11:47am
Hi Allison,
So glad you have expressed your fears about this.  I want you to know that when I went to my first chemo, I thought about not going because I was so scared.  But then I remembered everything I had read and knew this chemo is crucial for TNBC treatment.  The nurses will keep an extra close eye on you during your first chemo.  Please tell them how sensitive you have been in the past to drugs.  I see you are living in Henrico.  I am right down the road in Mechanicsville, VA!  I went to the Virginia Cancer Institute at Reynolds Crossing on Forest Ave in Henrico to receive my chemo  (Dr. Khatcheressian).  In the end, it was much more doable than I ever thought.  I stocked up on all the things that were on the list in all the literature they gave me, but actually needed very little of it.  Please remember to keep hydrated (water is the best, but I had an affinity to diet Ginger Ale during that time.)  Do you have somebody to stay with you during the first few days after your chemo?  If you are worried about a reaction, hopefully you will know pretty quickly, though.  I will be thinking of you on Monday.  Please let us know how everything goes!  It is very scary going through all of this, and I do know of a small breast cancer support group which meets in Richmond, if you are interested.  Just let me know.  Sending you hugs and best wishes!
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AllisonH View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonH Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 3:31pm
Thanks, Denise, for the encouraging words. Fingers crossed I also have no problem.
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AllisonH View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonH Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 3:36pm
Susan, thanks. Glad to know I'm not the only one. Happy there's someone close by. I'm going to St. Mary's for mine. I'd love to know about any support group. The only one I know about meets when I can't. Just deep breaths over and over. I also like ginger ale, especially cranberry ginger ale. Just so unsure of everything. What do I wear?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 4:58pm
Allison, you will want to wear a button down blouse so your port is easily accessible.  I always wore slacks, but I'm sure a nice pair of comfortable jeans is OK, too.  I ended up taking a backpack with me which had some favorite snacks or books.  Some people would bring their i-pads and earphones.  Of course, if someone is with you, you can just enjoy some good conversation!  My nurses used a spray to numb the port area (it would make that area very cold for a minute) before they put the needle in.  It never hurt having the needle in, and I couldn't even tell anything was dripping!  The  breast support group (which I have visited on occasion) meets at Richmond Surgical every third Wednesday evening at 5:30 PM.  One of their Nurse Practitioners, Susan Uhle, facilitates the group.  You do not have to be a patient there to come to the meetings.  Their address is  8921 Three Chopt Rd.  Suite 300  Richmond  23229.  It's easy to miss the building as there is no sign out front - just have to look for the address.  Parking is in the back of the building. Susan Uhle really helped me a lot - she persuaded my surgeon to hold off on a third surgery so I could start chemo in a timely fashion.  Once in awhile, she invites a speaker to come to the group.  I enjoyed meeting there because it was a small group and Susan is a wonderful listener.  I've heard good things about Saint Mary's; I went through Henrico Doctors at Forest and they were good as well.  I will definitely think about you tomorrow and hope all goes smoothly.  You will one day look back on all of this, and wonder how on earth you got through it.  But you will get through it!  Sending my love and heartfelt best wishes!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 5:00pm
"every third Wednesday evening" should read the third Wednesday of every month.  Sorry!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonH Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 9:55pm
Thanks, Susan. I'll put it on my calendar. I work most Wednesday nights, but I'll see what I can do. There's a group through Bon Secours that meets at the Watkins Centre the first Tuesday of the month at 6:30. Going to have trouble making that one, too. I'm sure I'll find one eventually.

I'm planning on taking my Kindle and phone. Will probably take headphones, but mom and friend are coming with me so probably won't get to use them unless mom is driving me nuts.Smile

Also have coloring books and markers but don't know if I'll take them this time. I have a calendar/journal that I'm going to take with fancy pens. Most likely will take some crackers but otherwise will wait to see what they have to offer.

Thanks for sharing. I'm still freaking out but a little less so. Thanks for the love and wishes! Deep breaths!
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Post Options Post Options   Thanks (2) Thanks(2)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 11:32pm
I was petrified too!  I did have a reaction to the Taxol but after that, it was smooth sailing.  They pre-loaded me after that with steroids and slowed the drip down and I was fine.  I brought snacks with me and my Ipad.  Be aware of the taste bud issue for the first week.  That is what freaked me out.  No one really said anything about the taste buds to me and I was so worried my full four months of chemo would be like the first week post chemo, IT's NOT.  For me, the third infusion was the worst (I had 4 total infusions, TC every three weeks).  I am 50 days post my last infusion and starting week 5 of 6 RADS.   I see the light at the end of the tunnel.  I was really afraid of the CT scan after my last chemo.  That came back clear and I really relaxed after that.  Chemo isn't great, but it isn't terrible either.  Eat ice chips during your infusion.  For me, that helped with the taste bud changes.  Know you are not alone, we have all been there and gone through that fear.  I am still bald, praying to get through all of this in a few weeks and very very grateful for this site.  It has been a true blessing to post my fears on this site and have others walk me through this.  The saying "give yourself Grace through this" means something to me now.. So, give yourself some Grace.... be well

Penny
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2017 at 4:43pm
Hi Allison, 
Just wondering how you did today.  Hope everything went well.  Like Denise said, the first chemo session is the scariest.  I had to smile when you mentioned your Mom - I'm sure she is so worried about you, and yes, Moms can drive us crazy! LOL   When Penny mentioned waiting for her hair to grow back in, I remember that like it was yesterday. I am planning to get my hair trimmed for the first time very soon!  It came back with some curls, and I think it may be wavy for awhile....I hope so anyway.  Please let us know how you fared.  I know for me the fatigue did not set in until 2 or 3 days after the infusion (I had TAC every 3 weeks).  Listen to your body, and rest and sleep when it tells you that's what is needed.  I hope you can take off some time from work after each infusion.  (I work part time, and I always took the week of chemo off.)  Be kind to yourself....and eat 3 meals a day, even if you aren't hungry.  They can be small meals, but keep your system going!  And take you anti-nausea pills - they really do work!  (I would go off of them too quickly and learned that nothing would stay down!)  Hope you can sleep well tonight and know that you have made it through a day you will never forget......
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Post Options Post Options   Thanks (1) Thanks(1)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2017 at 11:52pm
Hello Allison,
Checking in to see how you are doing! sure hope your first chemo went well with no problems, please when you feel up to it let us know how things are going for you.
DeniseHug
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonH Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 12:14am
Chemo itself was just fine, no big deal, so thanks for the reassurance there. Friend and Mom went with me, and we just chatted the whole time. Unfortunately, ever since then, I've been sick constantly one way or another-headache, dizziness, nausea, extreme muscle pain, etc. Fourth day was my fatigue day, and I was out of it pretty much the whole day. I'm fairly sure one of the anti-nausea medicines caused the migraine and dizziness which caused, you guessed it, nausea. I've been very hungry but don't want to eat. Had to keep working through it all which was quite unpleasant. Next two days off so going to try to figure out what to do for next week when I have chemo again. Need a different anti-nausea than zolfran. Thanks for listening to me whine. Hate to be that person and don't want it to be my only conversation with people. Glad to have people that understand. Thanks for checking up on me.

Edited by AllisonH - May 30 2017 at 1:26am
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 10:15am
Hi Allison - I am glad to hear from you.  I did not take any of my anti nausea medication (I was told to wait until I actually had a symptom or wave of nausea and then take the med).  I was then told to take it like clock work.  So, are you pre taking the meds because you don't want nausea or are you actually nauseous?  Ask your onc, but that is what my nurses told me (and they knew best).  Afraid to eat?  Why are you not eating?  I was told to eat (every two hours) and to walk, walk, walk and hydrate (all of which I did).  So, maybe you need to mix this up a bit.  Always check with medical but that is what I did and I had zero nausea or dizziness.  Hang in there!!!!!  This will be over before you know it.  Also, keep a journal - chemo symptoms follow patterns so you will know what to expect :)  Penny
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 9:47pm
Allison, So glad to hear you made it through your first infusion.  Sorry to hear about your headaches and nausea, though.  I forgot to ask if you have to take the Neulasta injection the day after.  If so, a side effect of that is aches in the bones.  Claritin (the allergy drug) can help prevent that.  Just take one pill of Claritin the night before, and then take for several days after.  I hope each day will have you feeling better and stronger.  Taking chemo is like a roller coaster - you start to feel better, and then when you are almost feeling back to your old self, another infusion comes along, and you're back where you started.  You will soon know which days will be your "good" days and which days will be your "everybody leave me alone" days.  Please keep us posted!

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Post Options Post Options   Thanks (1) Thanks(1)   Quote GrammaSue Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 10:09pm
Hi Allison,

Just saw your posting about starting chemo. I'm sure by now you are past that first treatment and everything went well. I have gotten through the first round of Adryamycin/Cytoxan and am now receiving 12 weekly infusions of Paclitaxel (Thursday will be the third of twelve). I agree with what SusaninVA posted about chemo being a roller coaster. I find that just about the time I think I'm feeling better its time for another treatment. BUT remember that there are a fixed number of treatments and hopefully, at the end, you will find that they worked well and can move on to the next phase of treatment. 

I wish you luck in the upcoming months and will watch to see how you are doing. 

Regards,
GrammaSue

PS: If this 70 year old can do it, so can you!!!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote AllisonH Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2017 at 12:13am
Thanks, everyone! Penny, yes, I waited until I was nauseous to start taking the zolfran. Started headache and dizziness which caused more nausea. Thought it was weather-related migraine but waited to take migraine medicine because of taking so much other stuff.  Stopped taking zolfran. Finally took migraine medicine which helped but honestly nausea didn't leave until a day or so ago. I do have a second anti-nausea which helped but will put me to sleep, so I can't take it when working. Not eating was a combination of the nausea and nothing I wanted. I think I've got that covered now, though. Stocking up on small containers of jell-o, applesauce, and pretzels. I've been trying to walk more, but I work in an outdoor mall, and it rained every day last week. Don't think I drank as much as I should have, but, again, have a new plan for that, too. I was trying to space out drinking through the day (sipping, really), but I just do better if I chug it down.

Susan, yes, I get Neulasta second day after chemo (fits my schedule). They told me to take Claritin, but I take Allegra every day for allergies. Claritin does nothing for me for allergies and not supposed to take both at the same time. Well, so much for that! Skipped Allegra and took Claritin; allergies made me sick. Took Allegra and skipped Claritin; bone pain was awful. I'll be sure to take them hours apart, but I'm taking both. Checked with onc, and while not generally recommended, not a problem for a couple of days. Also, it's only for the AC chemo, not the TC, so only have to do it 3 more times. Had to laugh. Every day last week was pretty much a "leave me alone" day. Not good for a retail manager! 

Anyway, lessons learned, and new plans in place, so hoping next week goes so much better. Also, asked for an extra day off which I may do for the other AC weeks, but I don't have enough PTO to do that for every chemo week since I have to plan for surgery time off, too. Hopefully, won't need it, though. Right? Right!

GrammaSue, sounds like you and I are on the same chemo plan. Thanks for the encouraging words. BTW, I'm 58, so not terribly far behind you.

Wanted to share this story with you because I knew you'd understand. Had to see my PCP this morning for something probably not related to BC stuff (but who knows). Anyway, I love her because she's tough, doesn't let me get away with stuff, and so on. We're similar in age, and we often share stories about aches and pains (my knees, her back). I'm sure she's not the right dr for many people, but she's perfect for me. Anyway, I saw her right before I started chemo, and I could tell she was upset and concerned about everything. When I saw her today, it was supposed to be a quick, 15 minute appointment. Turned into at least half an hour. We talked about all kinds of things related to the BC. She told me she knew I was strong enough to get through this. She actually got a little weepy! She hugged me and told me she loved me. I was overwhelmed and so appreciative. Made me realize how much this is affecting other people, too. Came out of there feeling so much better emotionally. Felt so good!

Thanks, everyone. I'll let you know how next week goes.


Edited by AllisonH - May 31 2017 at 12:16am
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Post Options Post Options   Thanks (2) Thanks(2)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2017 at 1:40pm
Allison, I had to smile when I read your post.  I will be 58 next month (went through the chemo when I was 56).  And I imagine you are up on your feet a lot being a manager - please take care of yourself.  Go to your office and sit down for some breaks when it gets to be too much.  Gramma Sue, you are an inspiration!  I am glad that you are tolerating your chemo and please take care of yourself as well.  I believe I saw you on another thread where you said you are getting help with household things.  Please do!  I was fortunate in that my husband and teenage son became rather self sufficient (they had to be!) and was also touched by the offers (and sometimes, insistence) of friends to do things for me during that time.  So I am not to far from you in age, either.  Sending out hugs and best wishes for you both and hope that this time will pass quickly and you can be on the other side of this looking back.  I still have "flashbacks" of certain things that went on and, almost two years later, it still does not seem quite real to me all that went on.  And Allison, your PCP sounds like a gem!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2017 at 1:46pm
Penny, sending you hugs and good wishes as well.  It sounds like you are holding up fairly well - hope this time goes quickly for you, too!
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Post Options Post Options   Thanks (2) Thanks(2)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2017 at 2:30pm
I am doing great!  This is my last week of RADS.  Met with my rad onc, and based on my protocol, age and treatment they expect great results.  CT scan clear, port out, chemo done, rads almost done.  Follow up care plan is 3 months and then I go to med onc for mammogram on affected breast.  No other treatment scheduled.  What will I do with all my time (now that I no longer have to go to a medical appointment everyday)?  I will live life, not worry, stay active and healthy.  I gained 4 lbs during my treatment and that has all fallen off.  My little blonde hair is poking out on my head and that is super exciting.  I have learned a lot about myself and others during this journey.  I have worried my life away before this diagnosis and I won't do that again.  The women (and men) on this board and those who I meet in my daily life have been a blessing.  Everyone that see's me knows I am going through cancer treatment and their kindness and eagerness to talk with me, hold my eye contact a little longer and just general "loving behavior" is just amazing.  I am kinder, have slowed down a bit from my "task manager lists" and value the little things for sure. My company I work for has shown me grace and have accommodated everything needed to continue to work through all of my surgeries and treatments.  I am a very lucky lady!  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (2) Thanks(2)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2017 at 10:59pm
So glad to hear, Penny!  Yes, this process changes you for sure.  But I think aside from the scars and side effects, most people are changed for the better.  I feel like I am a better person now than before - I certainly appreciate each day, and try to notice little things (like my rose bush blooming and the songbirds singing), and I don't stress over "stupid" stuff anymore.  When my husband told me the company he works for was sold to an investment company from China, I didn't stress; just told him we take one day at a time around this house and we will deal with whatever comes along!  I enjoy this new viewpoint so much more!  And I have an appreciation for certain friends who astounded me with their love and compassion.  My heart remains touched by their caring.  (I just lost one of those friends last month and wrote a post about her - Nancy.)  Still think of her every day; she was my "second Mom".  Glad to hear this is your last week of treatment!  You may feel a little bit of anxiety next week, realizing that you have no appointments.  It's kind of like graduating!  You will adjust and then start prioritizing your life again - and your priorities will probably be different.  That is a paradox - how something so terrible as this diagnosis can bring so many gifts as we adjust to a new life.  My theme right now is "simplify" and I am definitely eating better and exercising more - have even learned how to do yoga!  Now, I love yoga and don't know how I ever lived without it!  You will also enjoy seeing your hair grow out!  You have a lot to look forward to!
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