Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
-
*For those who finished chemo a while ago*
Can you share how you've been feeling since you finished? I finished almost 6 months ago. A lot of my side effects are gone (neuropathy, stomach issues, etc.) and I felt pretty good the first couple months, though still got tired easily. Now however -- I'm constantly exhausted. I'm not sure if it's because of my pre-existing health issues or a delayed effect from chemo? I spend half the day in bed or on the couch.
I also have a lot of pain throughout my body & especially in my neck/spine. And the front of my neck has been swelling/tingling on & off, which started during chemo. Over the last month or so I've had more hair loss (mostly brows/lashes but some head hair too) and my scalp is super sensitive/painful like it was when I lost my hair! Also I'm still in chemopause (I'm 30) and I haven't had a period in nearly 10 months.
Just trying to understand what is normal and what I should be mentioning to my doctors!0 -
Indenial- I finished infusions for chemo August 2012 and Herceptin in March 2013. I have to tell you that as time has gone on, I have less aches and pains and I feel like I did before I got diagnosed. I know I have some aches and pains from getting old ( I'm 58)and the Tamoxifen. I have not had a period since April 2012 which was right after my first infusion of chemo/Herceptin. My hair has come back steadily and I have not had a big fallout of eyelashes or eyebrows. My scalp feels fine. I do not take any supplements or vitamins since my onco told me that she preferred that I ate what my body needs. So I am watch what I eat to make sure I get enough nutrients through my food. I also try to do a daily 3+ miles and end up doing that 4-5 days a week.. When was your last visit to see your onco? You may want to get a blood panel done to see if you are deficient in iron or anything else. You may also want to start writing down how you are feeling daily so you can see if there is a pattern to your tiredness. I don't know if you have had any side effects from the Tamoxifen. If it was me, I'd be in the doctor's office and letting them know exactly what is going on and not wait too much longer. Hope this helps..... if you have any other questions, please post them or private message me. HUGS!!!!
0 -
wrenn, so good to "see" you.... Sorry you are having all these difficulties. The chemo is so brutal....I'm sure you will come to the right decision with your onc.
Hugs to you!!0 -
Wrenn, Thanks so much for checking in with us when you are feeling so rotten. I am glad you are able to come home, but I do hope you are getting the care you need. You will remain in my thoughts and prayers. You have had one round which very likely killed and and all rogue cells that were there. Whatever decision you make will be the right one for you.
SC, I have been trying to find gift ideas too! DH did come gloating home the other day letting me know that he did my shopping for me (he bought himself a belt sander). All i have bought for him so far is a gift certificate for a sushi making class. He is a real foodie.
VirginiaNJ, Vent away! I have thrown myself many pity parties, and I tend to feel quite a bit better afterwards...mentally, anyway. I am a list person too, and I like to make lists of what i want to get done each day...even if there are only one or 2 things on the list, I still feel like I accomplished something.
Indenial, I wonder if some of those effects are from the tamoxifen. My MO wants me to start it Dec 7, but that was an arbitrary day...he picked it so i would remember. I do not plan to take it until My side effects from chemo are decreased a bit. I want to know which effects are from which, because my MO seems to be the king of denying side effects are from chemo, etc. I plan to keep a daily journal...will see if that helps. I do hope your side effects improve and that you get to feeling better soon.0 -
how many days after the last TC chemo until the first Tamoxifen? Do they do tests in between? Scans?0 -
Headeast- I saw my onco 3 weeks after my final chemo which is when she gave me my Tamoxifen prescription. I asked her if it would be okay to start the Tamoxifen the following week so I could have one week of feeling good and not having to take any extra drugs. She said I could have that week but I really did need to start taking the Tamoxifen. I started taking it September 6, 2012 and but for a 2 week period that I did not take it, I have been doing my best to take it regularly and consistently. The reason I took the 2 week break was because I had developed the hives and my onco and I were trying to figure out if the Tamoxifen was the source/cause of those hives. Fortunately, it turned out that the Tamoxifen wasn't the culprit.
Wrenn- You are not first person that could not tolerate this chemo regimen. Please ask your onco what other alternatives there are for you as far as chemo goes. Sometimes Abraxene is used instead of Taxotere if the onco determines that the patient cannot tolerate the Taxotere. Here is the BCO.org link that explains/describes Abraxane http://www.breastcancer.org/treatment/druglist/abraxane. The reason it is not automatically given to patients instead of Taxotere is because of the costs and the insurance companies will reimburse for that chemo once it is documented that a patient cannot tolerate the Taxotere or Taxol. Hoping you feel much better very soon!!!!
0 -
Headeast, I have not had any scans yet at all. Since I was node negative, MO refuses to do scans unless there are specific symptoms. I go in to see him 4 weeks PFC, and they will draw labs, and I guess he will talk about plans from this point forward and see how things are going on tamoxifen. I plan to make an appointment with my gyn doc in the next month or 2 because I would like an exam at the beginning of tamoxifen to see if there are any changes over time. My mom did Tamoxifen for 5 years and had no major problems other than hideous hot flashes. I hope I am as lucky. My Final chemo was November 22. He has me starting Tamoxifen on December 7. He picked that day because it is Pearl Harbor Day, and he thought that would help me remember to start on that day. I do have to ask PS if it is ok to be on that during surgery. I assume so, but really, I have no clue!0 -
thanks KBeee
I had some energy today - put up one of my Christmas trees and walked 3 miles - was a balmy 45F today which was way warmer than the 20's we had last week.
For you ladies starting Tamox - I can tell you that for me, my SE's were intermittent and relatively mild - sometimes hot "flushes," sometimes headaches, sometimes achy feet when I woke up first thing in the morning. I never had any SE's that were debilitating enough to stop taking it. My onc was even going to put me on it for an additional 5 years, but my new cancer was triple negative so not much point...0 -
Headeast, I had no scans before or after treatment. I saw my onc 3 weeks after my final chemo & got my Tamoxifen prescription, started it the same day. Had bloodwork at my 3-month follow-up to make sure my liver was tolerating the Tamox but other than that, no other tests/scans/etc.
Thanks guys for the input on how you've been since finishing... I did talk to my surgeon today (my onc isn't easy for me to talk to) and she suggested I see a specialist... though she wasn't sure who exactly I should see. I always seem to baffle the doctors! She thought some of my issues were likely recovering from chemo, and some due to Tamox, and some due to pre-existing health issues. So, who knows. I should track my symptoms, that is a good idea.0 -
So I imagine I will see or start with Tamoxifen on 12/25, that is three weeks after my last chemo. I will know that on Wednesday.
Tomorrow I see my PS to do one more expansion. The last time I saw him he said I needed at least two more. I think he adds 100cc each time except for the first one, when he only added 50cc. I am at 250cc now, tomorrow at 350cc. So I guess we will stop at 450cc unless I want more. These expanders don't have a perfect shape so it is hard to see. They go a little outside the chest area. I also feel like there is no skin to stretch.0 -
Headeast - I finished my fills a week and a half ago.....I am at 480cc (I have 500cc expanders and my ps never overfills). He said I was done bc my skin on my previously radiated side was getting too thin. My expanders are low and under my armpits.....lol. Very weird. I'm having a hard time imagining how I will look when it's all said and done (they tell me the final implants will be higher and closer together.....I.e. Less under my armpits). I was really large busted before so it's been strange being so much smaller but it's awesome not having to wear a bra lol.0 -
Since I'm having radiation after chemo, I won't start on Tamoxifen or Arimidex until the week after radiation. My oncologist has ordered a bone density test, and those results will determine which of the two meds I'll take, either Tamoxifen or Arimidex. (I'm post-menopausal.)0 -
Wrenn-I just read the past couple of days..and I am soo sorry you have the diverticulitis...my husband has had that twice..and both times the pain has brought him to his knees. He is not one to complain either..so I know it must hurt so bad! Not to mention, still having the awful chemo in you! I am sending you healing thoughts and prayers!
Headeast-I had to seriously push my oncologist to do CT scan after chemo...How are you suppose to know if its gone, if you don't have..is my question. I wanted to know so if one cell was left I'd do more chemo. When I went for my 2nd opinion on rads at Cancer Treatment Ctrs/Amer..they did a bone scan to make sure. They said you do need all the scans to know if its gone....which is ONE of the reasons I fired my original oncologist.
The tamoxifen I started 4 weeks after last chemo..mine was pushed a week out due to going for 2nd opinion..and then I dropped script off at pharmacy on a Friday and told them I would pick up Monday..wanted one more weekend....lol...I've had a few cramps in my knees..but went away..and have hot flushes..but those are about gone since I started taking the Remefin. Its been the save!! Other than that, can't really tell I'm on it.
Indenial-I am doing well since new oncologist. They have me on iron (this was main thing I think helped get me back to good), vitamin D and multi B..I'm, on my own, taking Biotin..which seems to be working as hair is growing back and nails still real strong. A few other supplements. I think you should get your scans and a whole blood workup to find out whats going on. One thing I have learned, is not to put a blind trust in one doctor. Its amazing the differences. I found that out, also, by reading these boards. Its like nothing is a sure thing. sigghhh
I hope you guys have a good week this week. I am still reading, at least every other day. I wasn't for a bit when I finished..but found..and this, to me, was weird..but when I went back to work and felt back to old self (I was out of work for 6 months with all my surgeries..then chemo)..that the past 6 months became like a dream..kind of hazy. ..hard to explain. I found myself going back to my old way of eating and not sleeping good...I have stopped that. I thought I would want to forget it..but find my old life feels "off"..so I've decided I don't want to forget. I read your posts and am right back with you..remembering..and it keeps me doing what I need to do to get myself as healthy as possible. This may all sound a bit crazy..I really thought..as narrow as my world became in those 6 months..that I would never forget every single little minute of hell..but I guess the mind is mysterious.0 -
Wrenn-
Praying you are getting better and going home soon! So sorry your digestive track did that! Thankful you got in hospital and are getting it all sorted out! Keep us posted!
I have ordered tons of presents and they all need wrapped..don't feel like it yet today, this port placement made me tired again?? Isn't that weird? I felt so good the last few days, I want it back!0 -
CKmoss, thanks for all the information. What resonated for me most was how everything became hazy and distant. I plan to stick around when I;m done. The daily tamoxifen for the next 10 years, should help me stay focused
. this reminds me I want to see the nutritionist at the cancer center and begin to plan. I am starting the Livestrong exercise program, if they clear me, in January and I am looking forward to it.
When they took my blood work last time, the nurse mistakenly gave me the CA 27-29 marker and it came up high....57. Greater that 38 can be an indication of cancer in the body. I tried not to freak out because I am node negative and he remarked that the nurse did not have to give me that test, However he did say we would repeat it at the end of chemo to see what it would be. My MO is the kind who will give information as it pertains to the moment so as not to overwhelm me, if I ask however he will talk about what our long term plan will be. IT is conceivable that he and I will be together for the next 20 years. ack!
I am assuming there will be some scans, I wont be able to sleep without it .0 -
SC - NO scans totally FREAK me out... Since I had a double mast- no more mammos- just I think the occasional MRI from the PS to make sure the implants are ok... I will go bonkers if I done have SOME kind of scan/test to tell me the cancer is staying away....
My hair is coming out by the fistfuls today.....soooooo sad0 -
VirginiaNJ -- what kept me focused on the positive when my hair was falling out was reminding myself that this was undeniable evidence that the chemo was WORKING! I imagined thousands of cancer cells disappearing with every strand of hair -- ZAP!
That said, I had a "hair" breakthrough at our fitness center yesterday. I felt good enough to make the trip down the mountain with DH to do an easy weight lifting session, followed by some water aerobics in the pool. I bought a swim cap to match my suit, but decided it looked even more ridiculous than my fuzzy bald head. So I left it off for the water walking -- liberating! Next time will be easier.
Does more hair keep falling out with each chemo, or is it mostly done after chemo1? I'm not completely bald now (chemo2, day 15) and it would be nice not to have it all disappear...0 -
I just adore all of you and you are being so brave. I'm still hoping to start next week if my MO clears me Friday. I don't know if my skin can handle all 12 weeks but I want to at least try.0 -
You hang in there, QuirkyGirl!!!! We are just going to keep moving forward and you are coming with us!!!! We leave no one behind here.......
0 -
Bluegrassharp- thank you - yes - that's exactly what my sweet brother (who has been taking great care of me as I am single and live alone) said - at least the chemo is working. I am much more sad about my hair falling out this time - prob just REALLY pissed and angry that I am going through it again.
Last time - my sister shaved my head two weeks after my first treatment as my scalp really really hurt...so I can't really speak to the hair falling out more with each treatment... This time, my scalp is just itchy, but no pain - but the hair is EVERYWHERE - lol. Interestingly, my onc told me NOT to shave my head this time as she wasn't certain all my hair would fall out..... Decisions decisions - at the end of the day I think it will just be easier with a bald head
Yay you for the exercise!!!. I think that's so key. I walked 3 miles yesterday and today- was the first time in a while as our temps dipped into the 20's last week and that's where I draw the line lol.
Getting there Quirky!!! I hope you get cleared so you can take the next step!!! I tolerated the first treatment fairly well. Felt crummy for about 5 days- but pretty good the rest of the time. Pls keep us posted for your start day!!! I go for #2 Monday - will be 50% done!0 -
Bluegrassharp, yes, hair keeps falling after more chemos. I have just a few left and my eyelashes and eyebrows thinned. The nurse told me I would lose them after chemo 4.
I will ask about scans tomorrow when I see MO.
My pain after the expansion 4 is brutal. I went today to see PS and get another expansion and took two Percocets. Still hurts a lot...and tomorrow chemo 4. Hopefully it won't hurt that much tomorrow!0 -
Okay my TC ladies...Here is funny for you..
Take Chemo they said.
It won’t be that bad they said.
Your periods will stop they said.
They freakin’ LIED....expecially on the last part.0 -
LOL FairyDM. I had a two day period the first cycle and a one day period that coincided with a 102.3 fever.
My doctor said lets see what chemo does. My mouth started feeling funny and then I realised I think I have a mouth sore and I am on antibiotics, how is that possible!!!??
Quirky, you will do the best you can like all of us. Keep checking in with us!0 -
SchoolCounselor- I had mouth sores too. I’m afraid next week that I will end up in the ER because after the chemo#1 my tonsils swelled shut and I had to run to the pharmacies for steroids and antibiotics and my fever was hovering around 99.9. My MO told me to see a densest and throat doctor. Chemo does weird stuff. I hope you get better. I was an APChemistry and APPhysics teacher for years and taught College classes, so disinfect a lot around the kiddos, especially papers.
The period thing is making me mad because I’m day 13 out off 1st treatment and losing all my hair and no tampons because you can Not risk infection. ARGHHH...I have had a bloody nose for two weeks and bloody diarrhea off and on. I Love my CHEMO!
T must stand for Tums, Tummy aches, Tits hurting, Toes locking, Tingles in hands and feet, Tongue swollen, Tonsils closing
C must stand for Clips of hair falling, Chip nails, Close sores in mouth, Cancelled plans, Chutzpa emotions, Chin hair
Feel free to add others to the list.0 -
Hahaha....... I'll play!
T= Temperatures, tastebud strike, terrible pain, throat issues, tumor shrinker
C= Cramps, Claritan, CBCs, calls to doctors, crabby mood, cancer killer
Wrenn, Are you feeling any better?
Headeast, Don't forget to do the happy dance while leaving your last chemo tomorrow. May your side effects be few.
Bluegrass, I lost more hair each time..days 13-15 each time.
Quirkygirl, Hoping all heals so you can start next week.
SC, I hope your mouth feels better.
I am able to eat without Zofran today. Hooray for small miracles!0 -
Wrenn- I hope things work out for you. Colostomy aren’t that bad you can lose some weight while you do it. The stomach pains have me walking like quasimodo. Sometimes I think of steeling little old ladies walkers or my Nana’s just to move around.
My mother at 33 and my Nana at 60 when she went through this they had the best sense of humor. I did not want to do chemo, because I have seen the horrible side effects that these women went through. Some of the side effects Nana is still living today. Well, my mother passed 3 years ago, but the meds they gave her they don’t give due to all the side effects now discovered. But my 86 year old Nana is still being a hoot. She is getting dementia. It is hard for me, because one minutes she is yelling at me because my chemo is 3-4 hours while her’s was 1 hour, the next minute she is giving me chemo advice, and the final minute she forgets I have cancer and my name. I love her.
"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." - Bill Cosby
"A good laugh overcomes more difficulties and dissipates more dark clouds than any other one thing." - Laura Ingalls Wilder
"Like a welcome summer rain, humor may suddenly cleanse and cool the earth, the air and you." - Langston Hughes
"Humor springs from rage, hay fever, overdue rent and miscellaneous hell". – Will Cuppy0 -
Hi ladies, I made it thru chemo #1 today w/o a hitch! YAY!
I hope you all who are having problems, get them resolved soon.
Congratulations on those of you who are finishing!
Thanks for being here~
((HUGS))
Terri
0 -
love the quotes, fairy. Thanks.
Yeah keepTF!!! Keep drinking to get that stuff flushed out of uou!!!!0 -
Keepthefaith -- hurrah for a good start! I second the advice to drink, drink, drink...and add: eat careful small meals for the next 10 days or so until your GI tract decides how it's going to handle the new situation. Keep us posted on your progress, smooth or bumpy. I have found that the women on these discussion boards love a success story; and will offer excellent advice and emotional support to help you get through whatever BC throws at you over the next months.0 -
keepthefaith, one less to go! You will find that all the sudden it will be done.
Today I have my last one and am thrilled! Lots of pain from my expansion from yesterday. With two Percocets and getting ready to leave my house.
Yay!0
