Starting Chemo April 2016
Comments
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NJR - I think clinics do things a wee bit differently, so whatever your doctor prescribes I would follow. I am on dose dense so I may feel symptoms more than you as I most likely have a stronger dose more frequently (every other week!).
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Thinking of everyone that started today and tomorrow!
Just like you all, it was a busy week preventing recurrence of cancer. Saw the medical oncologist - always emotional, I've calmed down - he was right about the Perjeeta and my insurance denied it. So I will appeal and he will too. I'm not going to freak about it - just told myself that it must mean I don't need it
. I realized today that I'm getting used to all the scheduling, phone calls and appointments - it was a big shock after being healthy and into natural medicine to all of a sudden be plunged into this world. I like the idea of thinking about all of us rushing around for our scans, tests, and treatment appointments.
Then I had blood work and then I had the echo. Excellent scores on my heart so that was cool. Everything all clear and ready to go April 14th at 7:45 am. I told my boss I'm out on medical April 14th and I got approved to do take home training videos for Friday all day off and 1/2 day Monday. YES! I'm working through this. I did not tell anyone about chemo. I'm going to wait. I also talked to my Naturopath today and she gave me lots of good tips. Saturday I see this awesome young lady that does my hair, we are going to pick out a wig and she'll cut my hair to match. Then if my cold caps experiment doesn't work, I'll switch out.
You know what ladies? I have in my mind that this is a CLEANSE...okay, its a chemical cleanse, very high end but that is how I am framing it and somehow I feel less afraid.
I started Ambien and it is really helping my anxiety so I feel myself, plus I'm over my sinus infection (that was NOT fair). I'm enjoying my week at work, the gorgeous weather up here in Bellingham and the incredible sunsets!
CJSharma thanks for reporting back! I hope you are doing well. How is your reaction to the steroids? I hope you have a deep peaceful post-chemo sleepy time.
Hi Roses,
I had my port in March 9th. I wasn't really prepared and it was upsetting to have the neck and shoulder muscles freak out - kind of like spasms but that is better. The port weirds me out and its still sore and bothersome. But I hope it will mellow. Procedure was nothing really. I went right back to work for a few hours and then home.
Annie
Annie
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Hi Roses,
I had my port in March 9th. I wasn't really prepared and it was upsetting to have the neck and shoulder muscles freak out - kind of like spasms but that is better. The port weirds me out and its still sore and bothersome. But I hope it will mellow. Procedure was nothing really. I went right back to work for a few hours and then home.
Annie
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Hi Kristy, hope you are doing okay now, I sent you a PM.
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So after hearing the news that i will need chemo which I wasn't expecting, I spent yesterday and today crying. Drank a few glasses of wine and decided im done crying. This is going to suck - big time - and obviously not what i want or hoped for but it will be for a few months and then pass. Just need to get to the oncologist(s), pick one and get started. My surgeon says I have five weeks to start chemo so i want to get second (and possibly third) opinions to make sure i am comfortable with all of the diagnoses. My first Onc apt in on Tuesday so well see how it goes. My surgeon said 4-6 months of chemo but I am hoping she is wrong.
For those who have experience, or know a little more about it, what is the interaction with the sun. Do we need to stay out of it all summer? Trying to figure out care for my kids this summer and whether or not I will be able to take them to the pool/beach most days as planned or if i need to figure out a different plan for them this summer?
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Just use a 50 SPF and wear a hat if you don't want to cover up.
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Annie - I love your spirit! You have your cleanse, I have my Lenny - what ever works to get us to think more positively is always good!
I'm not a fan of the port. But I will admit that after the first treatment, it does definitely have it's purpose. I can feel mine - but it's only been a week. I've been doing P90X3 with it in - burpees and everything - so it's not really interfering with anything. I also went the opposite direction and told everyone at the office. For me, that was the right decision, as I know have more support (and I got the most lovely flowers and funniest card). But you need to do what works best for you. I do have the ability to work from home, so everyone knows that I get chemo every other Thursday and I'll be WFH Thursday and Friday of those weeks. Nancy - HUGS!! Hang in there. Chemo does suck. I never thought I wouldn't need chemo due to the size of Lenny the Lump, but knowing didn't make it easier. When I decided I would just forget trying to save my hair, I felt more free. There are a ton of cute hats to wear - and you can even get things like bangs that just attach to the brim of the hat, so it looks as if you do have hair, if that matters to you.
Last night my stomach was numb. Not nauseous, just numb. I was able to eat (it's kind of rare that I'm not able to eat as I LOVE food), but went to bed early and slept very well without the Ativan (or as I call it - the "sleepytime drug"). This morning I'm fine. I lay in bed doing an assessment and of course, I talked myself into have a tight tummy, but after some coffee and my morning drug routine, I realize I'm still fine. I even managed to do # 2 - which surprised me as Cytoxan is supposed to plug one up tighter that the Bay Bridge at rush hour. (I did take the advice I had read to start with the stool softner the 1st day, so that may have helped. I'm considering which workout I want to do - so there's that. I may try the next in the P90X3 series as it's easily modified if I tire. I'll also do a nice long dog walk. Coffee tastes like coffee. But I'm told I'll feel things more this afternoon and/or tomorrow. So I'll report back when this all changes. I go back at 3:30 to get my shot to help boost my immune system.
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Thanks for the report CJSharma, it is nice to know that you are still feeling good. Hope this continues for you.
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It is always a shock to hear you have to have chemo njnancy but you will get used to the idea and by the time you get it you will have calmed down. I was in a state of panic myself but I have calmed down a lot and the fact that CJSharma is reporting back with little or no symptoms so far is a great help. It is best to just deal with things one day at a time and not be trying to look too far ahead and taking on too much. So far I have been through the mill but looking back everything I had to deal with so far turned out to be easy enough. It was only the thoughts of what might happen in the future that worried me the most and the things I worried about might never happen so best not to look to the future. I believe that chemo is doable and even if we have some side effects we can deal with them when they happen.
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NJnancy
Awwww....crying is necessary and good AND you'll pass into a different phase as your spirit returns. If not, if you feel super plummeted, talk to your doctor about something for anxiety and an antidepressant.
Chemo is not the horror it used to be and you'll meet so many women that inspire and encourage you. I have HER2+ and I posted about wanting to keep working on that forum and I heard from 8 women that worked through this. Every regime is different but most people say its "do-able". Its like "case of the flu for 2 -3 days" every three weeks, and "the worst part is the anxiety before you start treatment."
My first MO appointment...I had a panic attack in the waiting room -
and I don't remember much he said, I cried, he teared up and re-assured me that he would treat the whole person, so if I' have a terrible reaction or something, the regime will be altered. I have to change my thinking that this is something being done TO me, to that this is something I'm doing with the best medical team I can get. Take care! Hugs and support.
Annie
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Hi Numb -
Thinking of you - when do you get your scan results back?
Annie
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OnceOnce - wanted to check in to see how you feel!
Annie - my team is very similar - sounds like you have a good MO. They have all sorts of meds to minimize the effects. It sucks, it really does. I know I come across as totally happy go lucky, but I have very dark moments, too. My mom passed away from liver cancer, so until I had my PET scan, I was convinced it was actually that, and I had 6 months to live. I had already rehomed my pets, written my will... (in my head). It's normal to be terrified and a mess. My Chemo nurse told me that I was her most put together patient. Most people are in a fog and sometimes in hysterics. It's normal. I tend to think 'Okay, I've got this problem, how to I solve it?" It's just my personality. I'm weird.
Numb - yes, scan results back? Fingers crossed.
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Thanks Annie and CJ Sharma for asking. I heard nothing on the scans I had last Tuesday. I asked one of the nurses when I might hear or if I heard nothing did this mean there was nothing to report. The answer I got was that the results would go to my Dr. but that I would hear on the day of the chemo if I didn't hear anything before that. I could ring up to find out but to tell you the truth I am scared to do that in case I hear something I would prefer not to hear. I would just prefer if they didn't tell me and upped the chemo to zap any cancer I might have in my body. Of course it would be nice to hear that I was all clear but I don't have the courage to ask.
Annie, I also nearly had a panic attack about 2 weeks ago as I was reading a book on Gloria Hunningford's daughter who died from breast cancer, but I don't know her full case history but had she had it today she would have been saved. I was depressed after reading it and just panicked.
Would also like to hear how Once Once got on yesterday. I hope she is okay.
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Numb - in my experience - if there is bad news to report, you'll hear quickly. I have the ability to access lab results on line, which is nice. But I would operate under the idea that no news is good news.
And a shout out to Bagger and Avren who going through Day 1 today. Let us know how it goes if possible!
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Thanks CJSharma, hope you are right. Dying to hear how you get on at the weekend and hope you feel as good as you do today.
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I'm laying in bed after getting my first round of AC today. I had a nap I think because I was up earlier than normal and when I'm stressed I get tired. Now I'm back in bed because I'm queasy. I really didn't expect to even feel queasy the way the nurses talked about all the great anti nausea meds I'm on. That's why I came on here, to try and see what others first day was like. The actual treatment was not a big deal. I did cry a little as my emotions got away from me but I expected that. But I walked out thinking "I got this". Ugh. Now I'm feeling worse. I hope my last med kicks in quick. Looking forward to hearing everyone's experiences.
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hi all....
I am also starting chemotherapy on Monday, April 11. I will be on carbo/docetaxel/perjeta/herceptin. I have 6 rounds every three weeks.
I am very afraid, but glad to just have the decision made and move ahead. My port goes in next Wednesday. I am also cold capping and hoping to keep some hair. My infusion center is really excited for me to try the cold capping.
As far as anxiety, mine is off the charts. They have put me on sleeping pills, lexipro, and Xanax. Things are settling down now that I have a plan.
I have healed well. My mastectomy was March 7. The mastectomy was the breeze....I am more scared for chemo:
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njnancy, i had the same reaction upon hearing I needed chemo - had a total crying jag.. It does feel good to get it out though! It does suck, but reading about all these others going through it at the same time does help. I just keep telling myself that it is what it is and you go step by step to get through it.
CJSharma, glad to hear you're doing so well so far. I will be on dose dense also. I was going to ask if you were doing the Neulasta shot also but you did say you were going for that today.
Just found out my doctors also want me to have an MRI. My lump was in an odd spot that wasn't picked up on mammograms (I found my lump during self exam) so they want to really clear my other breast. I've had a PET scan (clear, yay!) and had a MUGA test today (instead of echo). I was mentally prepared to be done with tests - port goes in Wed. then chemo the following week - and then they sprung the MRI on me. I think I've reached my limits on tests!
Good thoughts for those who had treatments today!
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njr426,
I feel the same way! I am so tired of tests. Before my mutant cells dividing, I was a healthy woman! I had two babies and that was the extent of my clinic hospital visits. My port also goes in Wednesday. I cried on the phone with the nurse:( I just want to do the chemo and get it over with.
Jgab
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Uniboob (such a cute name!) - I had a numb stomach - not really nauseous, but definitely not a happy tummy last night. It went away this morning and I was okay most of the day, but I haven't been really hungry. I did have a smoothie this morning and some broccoli cheddar soup with crackers this afternoon. That was enough. I'm going to try some mild tilapia tacos tonight, but I really have not been wanting meat.
NJR - I'm so sick of tests, too! Goodness! I still have not had the echo - I need to get that scheduled. Oy. I just got back from my Neulasta shot. Take Claritin before you get it - because the shot stimulates white blood growth, it can make your bones ache a bit. Claritin helps with that. My nurse gave me one because she had one extra, and I appreciated it. I do have some, though, so I'll take it before hand next time.
Jgab - I was healthy, too. I exercised regularly, ate well... I did have knee surgery 3 years ago, but that was it. I guess it is what it is. My surgeon said that it's so very common now, and they don't know why. So, I try to look at it as "Why not me?" instead of "why me?". I do agree that I just want to get through this. So so so want to get through this.
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Jgab, I was perfectly healthy too! Only hospitalizations were to have my kids. Never even had a broken bone. Now its doctors, nurses, tests, technicians, forms and questions (the same forms and questions over and over!) I agree with just wanting to get it started already. The sooner you start, the sooner you finish!
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Today's posts all made me smile. We are all so similar in attitudes. I'm a type A go getter so this depression funk that I am in is unusual and a little frustrating to me. Guess i got all the tears out the last two days because today i was much better. Met a friend for coffee and then came home and took a nap. In the afternoon a friend and i went for a "walk" its weird, its been a week and a half since surgery and my legs are still really shaky. I work out regularly, 5 times a week but i can barely walk now. Today I made it 8 houses before I turned around (Probably a quarter mile tops) and then i had to sit down for the next four hours because my legs feel like they do after I run one of my races.
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So nice to get home from work and sit in the sunset and read up on all of your posts. Oh man, don't read about people dying of breast cancer - that is not our fate, they got this now and we're doing what they got.
Jqab - we have the same regime and I'm cold capping too. Excited to bring it to the clinic. We start the same week, so we'll have to connect on this journey and sail through it together.
Uniboob - welcome and your "I got this" spirit will return, its like waves and waves isn't it? We'll be okay.
Numb - waiting is the hardest part.
CJ thanks for sharing how you are doing, YUM on the smoothie and broccoli soup. My Naturopath told me "soups, soups, soups" so I'm going to try to make some but we have a great Food Co-op with yummy soups. Well, I hope they taste yummy after Round 1...
I had a bit of a panic today but I calmed down focussing on a client. I felt awash with all the stress - taxes, insurance, buying a house in a very tight market and CANCER like written all over everything.
YEP - me too, a candidate for Ivory Mom, organic, healthy and into natural medicine and BAM...here we are. My BS is awesome and he said "We simply don't know what causes cancer...but all these behaviors for you are protective factors." I liked that a lot. I have healed really well from my surgeries, remarkable well according to all the doctors looking at my scars and saying "WOW, you really are a good healer."
I'm grateful to feel well and have a couple of nice weeks before I get the chemo flu.
Thinking of our ladies who started today, looking forward to connections.
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Good morning CJ Sharma, you are the only one so far reporting back, thanks for that, you are keeping us all informed, hope Bagger, Araven and Once Once are also doing well.
Welcome Uniboob hope you improve today. Keep us informed, that's good we have two reporting back now.
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Uniboob - Hope you're doing better today. Thank you for posting your experiences. It is helpful.
CJ - I had read about the Claritin with the Neulasta shot. I was actually waiting for my doctor to mention it when we were talking about it but she didn't. I'll definitely bring it up when I start treatment.
It really is amazing reading through the posts how it's as if I could have written them all! I've felt all the same stress and panic that many of you have written about - whether it's waiting on test results or just building everything up in your head to the worst possible scenarios. I like annie's description of "waves". I've been thinking roller coaster, but waves is a much gentler way of thinking about it! I guess it's all a matter of finding out what works for you to get through it.
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Uniboob - hope you are feeling better today. I'm thinking of you! Sorry you are not having a better time. Keep notes on how you feel and take them with you next time. They have things to deal with most symptoms. If you are really bad, call your doctor (most have 24/7 support) and make sure to let them know what you are feeling. I did have indigestion day 1, which also surprised me.
Jgab - still thinking of you. I do better with a plan, too. I need to know what I'm doing, so I can plan to work around it.
NJR - my understanding is that the PET Scan picks up any unusual activity. But I guess that it's better safe that sorry. Good luck on the MRI.
Annie - I found a crockpot broccoli cheese soup (that is all I've been craving!) so I'll pop that in today. I love soups. So comforting. Your co-op sounds amazing. Glad you heal quickly, that helps.
Well, it's Day 3, the one that's supposed to be the hardest and I feel pretty good. Of course it's 6AM, and I'm dealing with what I THINK is the morning brain fog, but... we'll see. I haven't had nausea (my MO said that if you didn't get too nauseous with pregnancy, there's a good chance the nausea won't be too bad - I had a few bad days when I was pregnant, but mostly I was fine). I have had indigestion. I'm taking Zofran and Decadron daily for days 2-5, and I have Compazine and Ativan (more of an anxiety drug) for additional support - each hit different receptors so it's okay to take all at once. I'm finding that once the indigestion hits, if I take the Compazine and a Pepcid AC it goes away. I'm drinking coffee this morning and it tastes like coffee. I will admit that I'm not as hungry as I usually am, which is not a bad thing. I love food, so I'm usually non-stop.
I'm still waiting to see how other things move along. I'll check back this afternoon - I have no plans as I figured I'd be flat out on the sofa all day. I even had fish tacos last night (A Hello Fresh meal). I do feel bloated. Just my stomach. My face looks fine. 0 -
Like CJSharma, I'm just going to deal with the hair loss. For me, it was just one less thing to deal with! I've ordered some head coverings but haven't even decided or figured out the wig thing yet. The drawback for me about hair loss is that it pretty much tells the world what you are dealing with - everything else you can keep to yourself! I am excited to see that some of you will be cold capping. It will be interesting to hear about your experiences with that.
On another note - CJSharma - I was surprised you hadn't had an echo before you started treatment. I would have thought the doctors would have wanted a pre-chemo baseline test for future comparison?
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Hi April folks,
I had my first infusion yesterday. Not much to report. Felt okay. Slept okay and just got back from the farmers' market. No D at all. I'm going to bring little bites and a water bottle with me on any other outings though.
Note to those getting Herceptin: They gave me the non-chemo drugs like Perjeta and Herceptin first, then the premeds - including anti-nausea, then chemo meds. I was about 1/4 of the way through the bag of Herceptin when I started feeling queasy. I didn't want to bother my nurse who was busy with another patient, so I just asked one of the teenagers nearby for a sick bag. Finally, when it was worse, I interrupted the nurse and she immediately suspended the Herceptin drip and put the pre-med on. It wasn't quick enough and I lost it in the bag. After that I felt fine, but I wished that I had interrupted her sooner. So, don't be like me and wait, if you're feeling nauseated during your drips. Even if you've already had the pre-meds, they might give you a small shot of Ativan. (They gave me this too.) It has anti-nausea properties and works quickly, plus you get pretty relaxed too, so that was fun.
Many say that SE can hit on Day 3, so we'll see what happens.
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Thanks for that report Bagger, was wondering how you got on. So far so good so. Thanks for the reminder to speak up.
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Bagger, glad to hear it went (mostly) okay. They may have taken note about the Herceptin causing you nausea and will give you the premeds before next time, but definitely bring it up beforehand. Hopefully the next few days continue to be good ones for you.
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