Starting chemo July 2014
Comments
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Jennliza - I am also on TCH. My doctor increased my number of rounds from 4 to 6 last time I saw him so I will be getting round 5 next week. My sister and hubby think I should refuse the 2 extra because of the side effects that I am experiencing but I agree with you. We've already gone through so much to get this far and if we don't go all the way, we will have no one but ourselves to blame if the cancer comes back. If you were not having debillitating side effects from the TCH, I would insist on staying with the original regimen. I sincerely hope that you will continue to improve and have no more setbacks. You've been through way too much already.
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"We've already gone through so much to get this far and if we don't go
all the way, we will have no one but ourselves to blame if the cancer
comes back."I don't mean to censor you, but, please try to shift your thinking (or maybe just your wording). You can do EVERYTHING right and it can still come back. No one is to blame for their breast cancer.
Sorry. I just needed to say that.
Prayers and positive thoughts going up for all of you, as always.
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kebab -- thanks for that timely reminder.... We're all doing the best we can. We're all encouraged to "beat" cancer, but it may be that some of us will have to "manage" cancer for as long as we can. Even if I get rid of this tumor, I don't think I'll ever feel "cancer-free" -- it may be more of a chronic battle than a decisive victory. Just have to keep doing our best, I guess.
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Someone referred to chemo + rads as suspenders and a belt.
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Hey everyone, sorry I've not checked in sooner... I went into depression mode and having to wait for the board to meet a week later only made things worse- they met Wednesday, I had my consult and chemo yesterday...
Their decision... switch back from taxol to the remaining 3 red devil chemo (so I'll reach my lifetime limit on it) and then continue with the taxol after those are finished. Apparently it's rare to have new tumors grow while you are in chemo... especially the red devil which is supposed to be their best weapon in the arsenal of chemo cocktails, onco said that probably 3% of people have it happen...
Guess my cancer is stubborn too... realized during my depression that it may be stubborn but I'm a lot more so and I'm not letting it win. No one is guaranteed tomorrow so I might as well make the best of every day I do have, I refuse to worry about things I can't change any longer!
I have a lot of catching up to do reading wise on these messages, I just wanted to jump on and let you guys know what was going on. All the private messages inquiring quite honestly brought me to tears, thank you all it means a lot!
I hope you are all doing as well as possible and as time and energy permits I'll try and catch up! But right now exhaustion is winning so I must go take a nap before I end up with keyboard face!
Shan
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Chaos: Sorry to hear you've been so blue, though it's perfectly understandable. At least you have a plan, and a positive attitude. Yes, there's no sense wasting precious energy on things we can't change. Thanks for the update, and my thoughts and prayers are with you.
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Congrats Jennliza! Ditto on what everyone else has stated. I would ask tones of questions and please, please don't let them rush you into a decision that will effect you for years to come, specifically if you feel you don't have enough facts to drive you to your decision. I am just so glad you are out of the hospital and on to recovery.
Puffin, congrats on ringing the bell! Woot! Woot! I have until end-of-January until I am done with chemo. Maybe I can ring the bell when I am done with the big Red Devil in October ;-).
Hoping all are doing well and so glad there are those that are crossing the finish line.
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ChaosRains, I know I speak for the rest of Team July when I say, welcome back. We have been concerned, and you've been in our prayers daily. Your depression is understandable, given the circumstances. As you read back through the thread, you will see the outpouring of care for you here, and it hope it shores you up. We are always here for you.
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kebab - I think you're right, that didn't come out sounding like what I meant to say. I just want to go through those 2 extra rounds because if the cancer should come back in the future, I would always wonder if I stopped too soon.
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ChaosRains - glad to hear that you are able to surface. There is no doubt that this is not an easy road we are on and occasionally each of us hits a bump that we have to navigate by ourselves for awhile - but that is different than being alone. We aren't alone.
Anyone out there still needing a chemo-sabe bracelet? If so, send me a message.
I got out of the house this morning and did a little retail therapy and the local thrift store. I wore my wig and bought a wig. Photo to follow.
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Pink - doing OK, kinda, sorta, little d from the magnesium citrate last night, but not with cramping. Nausea this round got me yesterday and I didn't have the patch that you are supposed to put on, on chemo day, but got it yesterday and hope it helps over the weekend. My acid has increased and I upped my Protonix to 2 20mg's last night after eating 3 or 4 tums throughout the day. I'll need to call onco and ask for a script for the 40mgs, or I'll run out of my 20's.
Jennliza - Did the change come out of a tumor board review? Has it even been reviewed? I'd want their input, and why they came to this decision. Will the chemo now be through your arm? I also agree, that maybe a 2nd opinion from a different practice might not be a bad idea...
Chaos - so glad you are back.
All - I am expecting chemo vision to hit soon, so I might be off for 7 - 10 days, but don't worry, it is just the visual migraines that make it imposible to look at the screen or the TV, so I have hubby getting on my books that I put on hold at the library, now. No clue how I can read but not look at the screen, but thank God I can or I would be a mess.
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PET Scans - who has had them and how did they get them and when, as in when in the process and what was the month and year. I've asked twice and been told no need, yet others at my chemo center have had them?
Mags - I always did condom, pill and diaphram so I wouldn't have an unexpected pregnancy, maybe that is why I'm thinking chemo, BMX and rads. Wonder if they (doctors and insurance) will let me?
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LOL that's what I did. Btw I had a PET scan in May, between the MRI and the BMX. The reason they did it is I had one confirmed cancerous lymph node, and they wanted to ascertain that there were no mets.
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kmntwins, I had a PET scan (7/14) after my MRI (7/1) and I had met with my surgeon, where he recommended neoadjuvant chemo. One lymph node looked funky and the MO wanted to make sure that the cancer hadn't spread elsewhere.
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Chaosrain welcome back. I have been thinking about you. Sorry you have to go back to the red devil, but I hope it works. Hang in there
Nancy
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Puffin, Mumford- congrats on ringing that bell!
Jenzilla- I am so sorry you have had to go through all of this, hopefully things will start looking up soon, you are in my thoughts!
Nancy, Joeysmom, Ladyb- treatment plan for me is chemo surgery, then radiation
Coyote- I'd love a chemo sabe bracelet, what do I need to do to get one?
I think I have caught back up though I had to take notes, darn chemo brain! And I would like to thank you all for the concern, well wishes, and prayers it means a lot to me
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ChaosRains - We are so glad to hear from you. I understand the need as Coyote stated to navigate by ourselves for a while but yet know that we are not alone. Glad the board met and you have a plan of attack. My tumor board took a while to decide my treatment since I have 8 positive nodes but we have a good plan that we all agreed too. My chemo is not finished until End of January then on to radiation for 12 weeks or 36 cycles. I am like you I want to ensure this is hit with it's best shot up front.
I had PET/CT scans, Bone Scan, MRI and a few additional CT Scans to discount thing "things" that showed up during the original scans during my evaluations since I had positive nodes which were known pretty much up front. My BC presented it self in a rare fashion, where I didn't have a lump but only presented in the lymph nodes. T hey believe the lump took care of itself and the nodes did there job, but we didn't catch it until my early mammogram. So at this time the BS and MO don't want to talk MX or new girls until I go through my full treatment since there is no lump an the MRI showed no signs of BC in the breast or calcification.
-Angie
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chaos, glad to hear ur back. I asked the onc the same thing about growing during chemo. He basically said we don't no if the chemo is working. Wonderful.....we keep those fists up and I hope for the best.
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Please check out the family medical leave act info on the board. Even though it may be tough, employers need to give you that time, and your caregiver, not sure if fiancé qualifies. Also, see if there may be any volunteer cold capping helpers , or reasonable paid helpers, aside from your fiancé that can help you in the city, even every other treatment, so he doesn't need as much time off. If you have been cold capping this long and it's working, I'd keep going if possible and not risk that you wouldn't lose your hair on taxol.
Re: the taxanes, I will be doing 12 weekly Taxol infusions, four of which may be when pregnant. I have read studies that the weekly taxol may have less long term neuropathy than the dose dense schedule, since less of the drug needs to given each time on the weekly schedule. It was a small study so no idea if this is really " true" . No idea about the other drugs, I'm an AC girl.
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Nasty, nasty sore throat today. Hurts to swallow, kept me up all night. No real fever though (99.4) so I at least get to go to urgent appointment later today instead of the ER (AND they said to ho ahead and take a pain med, yay!) It's still so weird to worry so much about something as trivial as a sore throat! Although to be fair, if it hurt this much when I was healthy I'd probably go to the doctor for it anyway.
Nothing major, just cranky. Although it was kind of funny that the girl on the phone this morning assumed that she was talking to an elderly woman for a couple of minutes because my voice is so rumbly.
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Scary thing. This yucky feeling is beginning to feel normal! Feeling "good" certainly has a new low bench mark. Every inch of the GI tract is down right touchy. Everything I put in my mouth, to eat or not eat, affects something along the way. I was told that the GI lining is made of fast growing cells, so it is subject to destruction by chemo; hence the multitude of problems. It's day 10 post chemo, relief will come soon.I hope this is a good week-end for all.
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Thanks everyone for all your responses!
Today I ventured out to brunch and had to stop after walking only a block...I felt weak and light-headed. Is it the low red bold cell count, too much dilaudid, low blood sugar or just weak from not moving much for almost 2 wks...who knows but it feels scary. I had brunch with my fiancé and close friend which felt great! I honestly don't know if I'll be able to make it to work on Monday...
As for chemo, I understand why my Onc wants to move me to Taxol only for only 3 weeks. I have 2 big open wounds: 1 @ size of quarter and the other the size of a nickel....that goes about 1/4 - 1/2 inch deep. She is worried about healing. Do the risks of chemo (specifically TC) outweigh the benefits? These wounds need to heal and chemo can prevent healing and lead to infection. I don't want to delay chemo more than a week...but will prob push back my chemo from Tues to Fri. Not sure if it makes a difference...but would like a week out of the hospital before doing chemo....see how I'm healing. Perhaps if I am healing ok...will push for some Carboplatin with the Taxol.
Someone asked about what I was prescribed. Originally, I was prescribed 6 Taxotere, Carboplatin and Herceptin treatments spaced 3 wks apart. I was leaning towards doing 5 tx given the size of my cancer. I've done 3 treatments...missed my last one this past wed. So if I do 3 taxol (hopefully w/ Carbo if wounds look good) it would bring me to 4 total treatments. Funny when I proposed 5 treatments, the reasoning was because if I just had ER/PR +, I would only be 1mm above needing chemo at all. Once you have HER2+, you get chemo because they don't administer Herceptin without chemo period. My Onc threw my statistic back at me when she recommended reducing me to 4 equivalent treatments.
My question, which I will ask my Onc on Monday...Is it better to delay my chemo by another week to make sure I'm healing or am I putting myself at risk b/c the chemo won't be as effective?
ChaosRains - so sorry about your diagnosis...keep up the fight!!!
Oh and I second JenKay's comment on BLM and tissue expanders. I came out bigger than I went into surgery!!
Hope everyone is having a relaxing weekend and feeling well!!
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Puffin, congratulations! It's sweet to hear that bell, isn't it?
Chaos, it's so good to hear from you...what a journey this is! I don't have anything brilliant to say (others have done that ahead of me), but that we're glad you're back and hanging in there...
Jennliza...you're one tough chick. You have my full admiration! New Yorkers really do kick ass.
Coyote...I hear you on the new lower benchmark for feeling good...the good news is that when you think you're finally feeling well, you will actually feel better!
I've done nothing physical for so long and tired of the weight gain, so I'm off to a hockey lesson. I'm sure just putting on the equipment will tire me out, but if I can manage a gentle skate and slam a few 'cancer pucks' into the net, it will feel good.
Happy Sunday, everyone.
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Hi ladies,
I'm im the August thread, but frequent this one regularly. Just want to say thank you to everyone. What an amazing group you all have and so supportive and encouraging. I've learned a great deal from you all. You each inspire me. I'm going into my 3 rd infusion this week.
I've noticed several from oklahoma as I am as well.
Bless each of you and I praying continued success as we all conquer this beast!!
So very great to not feel alone during this battle. Glad I found this site!
Thank you again ladies. Have a great Sunday!
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Glad to have found this forum. Been feeling alone and struggling. I have my second round of Chemo tomorrow. Didn't do great with the first...nausea, no appetite, weird feeling like my insides collapsing in. I know a strange description but only way I can think to put it. Wondering if anyone has hints on how to make it easier.
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Coyote -- I know what you mean about eating. We go out to lunch on Sundays, and I sit and look at the menu, wondering what will taste OK, what will taste like cardboard, what might bring on the Big D or what might contribute to the Big C. It seems kind-of random.
Jennliza -- Decisions, decisions! Best of luck with yours. Hope you only return to work if you feel up to it. After the ordeal you've been through, I'd think your office would understand.
Mumford -- Hope your hockey lesson goes well! Cancer pucks, indeed. I feel pretty feeble myself; I'm going to try to go to the pool today with the kids.
Hope -- welcome, fellow Okie! Good luck with Infusion #3.
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Hi Hope and Candice, welcome to our thread. Your thread monitor Ladyb1234 started out with us and checks in from time to time. You are so right about how encouraging and supportive the ladies on this thread are, we've shared so much that anywhere else would be TMI, it kinda brings you close and personal, doesn't it? I'm glad to hear that you have found good information, and you will always find a warm welcome here.
I'm going through my pre-chemo insomnia the last couple of nights, not the steroids yet, but just exhausted. Finally got up at oh-dark-hundred as DH would say, sitting here drinking coffee and playing solitaire. Hope everyone got a good night's rest.
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Hello Candice, and welcome to Breastcancer.org. We're so glad you've found us. Here you will find a supportive community where you can vent your frustrations, ask questions, and receive support from others who have gone through similar experiences.
Check out our page Treatment Side Effects for information about the various side effects and suggestions for how to manage them. Keep us posted as to how you're doing.
Wishing you all our best,
The Mods
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1. I completed chemo in June, radiation in August. Other than a few things, am certainly better than before. Things that still bother me are: fatigue, some nausea, fingernails, hair coming back on head slowly and all kinds of other weird places, mouth tastes like mothballs and dry. Getting ready to return to work and am leary.....work with sick people and even though blood work is doing pretty good...sick? But tired of paying COBRA and hanging out at home. God bless my family. You will make it and according to all my boob friends further along, it gets even better. Chill out
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Jennliza, I can't believe you're even contemplating work tomorrow! You've been in my thoughts
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