Chemo Starting September 2018
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Hi Bostoniagla25, thanks for stopping by! I live in Andover so we are not so far apart. I am in Boston MGH. Because it is equidistant and my office is on State Street in Boston so I figured for radiation it will allow me to go in sometimes. I also have some meetings in Sept, Oct, and Dec where I can get hotel rooms in the city which will help. I am lucky that I can work from homeas much as i need to. I did have to cancel all work travel for the rest of the year. But I will PM you.
On the cold caps, I heard via a webinar from memorial Sloan Kettering that you can wash more often. In Europe they do not baby the hair as much as we are told to. So I am carefully washing each day and no blow dry. ran coconut oil through it today.
I am feeling better today. Day 6? My stomach was awful all night. Huge pains so thinking mostly liquid diet and proactive colase around chemo and again what they tell me when I email tomorrow. I have a normally Italian strong stomach so this is weird. I also skipped my daily espresso a couple of days and am feeling better with Just a shot.
Going to take this guy for a walk - he is my shadow since this happened and then come home and make soup. Cheers and good luck to everyone starting!
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JNKK, I felt relieved after the first one...at least it starts and less unknown! You got this
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First infusion is on the wayl. When driving here, I felt like I am coming here to get my death sentence, but as many ladies told me, I am here to fight this cancer’s ass! To my surprise, I didn’t cry’. Now I am all drugged up and feeling really loopy... it’s not a good feeling.. I have no control of my body.
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JNKK, good to see you! You'll be home resting soon.
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On my way home. Thinking to get groceries.
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JNKK - Congrats on getting your first treatment behind you!
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Thank you pcranky. Good luck tomorrow! I will be thinking of you
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Thank you JNKK!
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Hello. I’m a few weeks post bilateral mastectomy and begin TCx4 this month. I haven’t created my signature line yet, but I’m ER+, HER2- Stage IIIb with 22 nodes. In the midst of this all, it’s comforting to know that I do not have to be alone on this journey.
My best wishes to everyone.
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Welcome Faith46, sorry to have you here but nice to meet you
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Hello, all! I will be having my first infusion on Thursday. I will be havin 2 rounds of FEC, then 3 of Taxotere. (Every 3rd week) I have TNBC, had a double mastectomy on Aug 9. Still not healed from that, my chest hurts, still have fluid sloshing around.,had my port placed last Thursday. My incisions for port are so sore, I can barely stand to touch them! I am curious how they will be able to access it, without my jumping thru the ceiling. Any one with suggestions??:-(
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luv they put a numbing cream on before they access it but I know there are lots who get something( sorry bad memory) and put it on about an hour before they go for their appointment. Try typing in numbing cream or something similar in the search on the left top dashboard of the screen, good luck
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70charger: The MO prescribed a prescription for lidocaine 2.5% and Prilocaine 2.5% cream all in one which I put on at home an hour before accessing my port. Then when I was there the nurse also got an ice bag and put it on the area and I made sure it was numb. Didn't feel a thing. Headed for the 2nd treatment tomorrow morning and will do the same.
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@luv - I asked my MO for a prescription for EMLA cream. You put a big blob on the port site (the rounded part, not the incision) an hour before and cover it with tegaderm - which you can buy in the bandages section of a drug store - or plastic wrap. It really helps. Mine was still a little tender but I’d just had it put in less than 48 hours before. I’m expecting the next time will be better.
@pcranky - good luck tomorrow!
@Faith - Welcome. There are several of us in this thread on TCx 4. I had my first round on the 31st and so far only minor side effects
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Thanks Wanderweg!
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hi Tigerlily, somehow I didn't read your thread here , and I was feeling happy when you pm me that I forgot to introduce myself- Irina....
We have to go for lunch sometimes before it gets cold!!!
G I unfortunately will present , I will post later a list what to do for G I from my docs. You can always call the nurse at MGH even after hours. Please don't wait .... they said they want us to call...
ask about miralax... helps to move along ....
My Russian soul always asks for chicken soup.. good for stomach.... and meat ravioli...although I m not meat eater more poultry person and fish- I m from Baltic Sea region... fish is my life... and Massachusetts- nails it!!!
Wish al the girls get through!!! You strong and can do it!!!!
Jnkk- look great, when I go for infusion _i font think
I just put my positive attitude - it helps even with cold caps !!!! No negativity!!!!❤️
Lvebgngma- sending strength to you!!! It's tough... double mastectomy- is not cupcakes And cookies...
I had my port on Monday and Wednesday/ first infusion- I thought it s sore- but my surprise I didn't feel nothing/ mysteriously it healed before infusion... try some cream please - but I think it doesn't help- my daughter had her blood taken from a vein and cream for 20 min didn't do nothing!
Ok , good luck everyone!
Ps. Tigerlily- your dog awesome!! I have 2 cats ...
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question for everyone:
I am meeting with a MO on September 13. I am going to want at least a second and possibly third opinion. When I call the other doctors (from whom I want second and third opinions), they ask for a referral first. Is that normal? Does the SO have to refer it to each? Thanks in advance for any help on this
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sadlynew, when I went to my second opinion doctor, they just asked for all the reports that I have in hand, eg oncotype result, pathology from the surgery and the biopsy. It’s weird that they ask for referral.
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@Sadlynew2018 and JNKK, the referrals are driven by your insurance (forgive me, but it is part of what I do for a living). So your health plan will dictate what is required for referrals and authorizations. I am in a PPO so I did not need referrals - I was able to schedule and see, which is why I was able to start everything so quickly. I called my insurance company the day I was diagnosed since I never had really used it aside for preventive care and 1) confirmed no referrals and 2) ensured that my second opinion was considered an in plan (not out of plan) provider as the costs can be different (mine are) and cost YOU more if you chose to go out of network/plan. So I didn't need anything and my doctor's office was great about faxing records and other information over ASAP. Depending on the area/provider you may need to grease those wheels. I'm guessing if they are saying that you need a referral you have given them your insurance information and they know, but worth checking both on your own and asking to make sure. Depending on the environment/competition, sometimes doctors and hospitals are difficult about this process because they want the business.
My hunch is that JNKK has a plan like mine which is why it was not a big deal, similar to me. I had the same experience as JNKK.
Also re second opinions - of course get one or two if you want one, but it also depends where you are. I knew with my diagnosis and being in Boston and talking to a lot of folks and reading the plan of care would be the same. So I canceled by "first opinion" at my practice with a very, very good surgeon because I preferred the team approach at Mass General where I am now and knew with me there is a standard protocol. I googled the hell out of what they were telling me and discussed it with a few others. However, if I had stage II or III or a less common form I would have been different.
It will also help hugely if you decide to go to a practice where you are not a patient to call ahead and get a medical record/patient number. You usually have to do that to make an appointment. So I am at a hospital affiliated with Partners Health Care in Mass and had not been there before. A friend who works at MGH told me to call and register ASAP. When Mass General called me to schedule I had the number/registration (it was a phone call that took 45 min or so) and could schedule rather than say, no I'm not a patient, call, register, and call back. That made the difference for me in getting diagnosed on a Friday and into Mass General on Monday for a consult. It was after that I canceled my first opinion because I would have had surgery with the surgeon and THEN met with the oncologist and radiation on oncologist after surgery, versus meeting everyone at once.
Good luck - and call your insurance company if you have not....
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Someone posted on another site - helpful for those still making decisions...there are also guides for DCIS and stages 3 and 4 on the same site
https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#93
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Day 1 is in the books.
Met with my doctor, got my blood drawn, and went to the infusion center. Sat in a recliner. got my IV - then my pre-meds ( dexamethasone, Kytril, Pepcid and Benadryl), then the Taxol.
Attempted to ice my hands and feet and just couldn't tolerate it, it was too painful for me. My nurse told me to bring bags of frozen veggies next time and they may be more indirect. --
I was surprisingly high from the Benadryl. 50 mg of it is a lot.
I'm still pretty hopped up on steroids so I don't feel particularly bad tonight. I had a couple of "episodes" of feeling kind of dizzy and weak but they passed. I've been eating ok, but i have periodic stomach cramps. Also periodic leg cramps. I went to the pool and did 1/2 hour of water exercise and felt great for the next few hours, so I'm definitely going to try that again. Not much nausea yet. But I take nothing for granted - all bets are off when the steroids are gone.
Still - Day 1 is over and the 20 weeks of active chemo I was looking ahead at, is now 19. So thats pretty cool
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PS spoke too soon. Started getting queasy and popped a zofran. It wasn't that bad but everyone has told me to not let it get bad.
PPS Tigerlilly.. that is a beautiful dog
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I'm not a big "board-poster", but thought I'd check in from my first "treatment". This is what we call it at home since it sounds less scary to my boys (13 and 12) than "chemo". Sounds less scary to me too. ; )
The whole thing, including the cold cap, was a snap. (I had to ask if cap was cold enough... it was an initial shock when she plugged it in, but then, it was fine. I did take one ibuprofen before coming in, but it was a long time between that and getting going. I'm sitting here during my 90 minute cooling after treatments. I have very thick and somewhat curly hair, which maybe insulates too much, but also might give a benefit when I shed as I have a lot to spare.
I brought stuff to ice my hands and feet, but decided to skip it and get work done instead. I think I'll wait til I feel tingles and then jump on that? Not sure.
I worked through the whole thing today, even though they assured my the 50mg of benadryl would knock me out. That didn't happen - I was looking forward to a snooze! They also told me I would need a ride home, but I won't at all. I'm doing this on my own, and hoping to keep my diagnosis all to myself through whole thing (long story). My husband was on-call if I did end up needing a ride, but no need (he is buried at work due to flooding we had in our area, so it's better to let him work....
I know the worst is yet to come, but this was easy.
According to my docs, I'm in a gray area as far as tumor size and diagnosis. They said it would be fine if I decided to forego chemo. Looking at everyone's diagnoses here, it seems everyone in my situation gets chemo. so I'm sure I made a good choice. Chemo will give me maybe a 2% benefit, they told me. I did NOT want to do this at all, but would hate to look back and regret not doing it, so just plowing through. Maybe when side effects set in, I can stop if need be, and still feel ok about getting whatever I got.
Couldn't wait to come in and get this going. I just want to fast forward to the end. I'm sure everyone feels this way!
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Umakeme - congrats on getting through treatment 1
Day 2 -- I could not sleep at all with the steroids and i'm wired as hell today. I feel like Martin short as Ed Grimley today and my left eye is twitching like crazy I expect crashing in my future.
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I start chemo Sept 17. During oncologist visit she felt a 'palpable liver edge" and is sending me for imaging on that. Getting a PICC line. I am going to get a wig as close as possible to my current hair. I will be busy at my kids schools with parent teacher interviews, school events, and want to try to look as normal as possible. Most people who know me know, and I give them updates. They seem appreciative, and it helps me to talk and hear their experiences. One friend is a breast cancer nurse at the hospital where I will be getting treatment, so she is an awesome source of info for me. Feeling nervous about the liver...as this all started 4 years ago with an irregular mammo but nobody told me anything was seen. So who knows how long things have been moving around my system since then. I also feel like everything is surreal and this isn't actually my life. It is such a weird feeling. I am taking Neulasta in an injection 24 hours after chemo, each cycle, total 8 cycles. Thank goodness I have excellent private insurance as here in Canada, it is $2,700 per injection!
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Hello,
I'm jumping the gun a bit, Today I finally got my oncotype result, it is 27. My MO said that is not the number she hoped for, and that chemo is the appropriate treatment. I have an appt with her tomorrow to discuss, I really like her and feel that I am in good hands in regards to whatever she feels is the best course of treatment. I feel kind of numb I guess, I knew chemo was a possibility but now that it has been given, my brain is swirling. I guess I keep thinking, they removed the breast, I had no node involvement and clear margins do I really need chemo? Cant I just take Tamoxifen or something like that? I believe she said I would do 4 rounds of TC. I think she said with only taking Tamoxifen I have an 18% of recurrence. I am 51 yrs old.
I'm sure after I talk to my MO tomorrow I will feel more confident that the chemo is the right course, but I just wonder how many people choose not to do chemo against what their doctor's say..?
I will let you know after my appt if I will be joining you on this September thread.
Thanks for letting me get this out.
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@CPB, good luck tomorrow. I got 20 and a doing chemo, I am 45.
@Elizabeth, welcome.....
@pcranky, thank you! And glad you are doing ok. Nurse believes Zofran caused my GI issues and we are discussing now to mitigate, including proactive colase. Just FYI.
I am one week post TC, oddly my lumpectomy is hurting today, not bad but lots of twinges. I did do a vinyasa class today though...had been completely sensation free for a week. Feeling much better today but now have a weird feeling on the top of h mouth, bumpy. But eating and determined to sleep w/o Ativan. Fingers crossed.
@umakemehappy, hope you are doing ok still.
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Hi to everyone who has joined recently and thank you all for updating about your experiences. I had a dream last night that chemo was behind me and had been a breeze. pcranky - I credit your post about your first infusion for inspiring my dream. Now I just hope it comes true!
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Beeline - I hope it does too!
I started to feel way wiped out about 2/3 of the way through today. I forced myself into the pool and once again it helped, a lot.
I am also self medicating with ice cream. This is probably ill advised but its enjoyable.
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Will be starting my chemo on 9/11. I am with Kaiser. Saw two different oncologists and ultimately decided to go with TC. The slight (2%) benefit of AC+T did not outweigh the increased risk to my heart (5%) and secondary leukemia (2%). Both oncologists said it would be 6 rounds. Most of the people on here who are taking TC seem to only do 4. Also, nurse today said I could only take tylenol for pain or headaches. She specifically said not to take advil or ibuprofen which seems contrary to what others take. Oh well. Talk to 5 people, you'll get 5 different answers.
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