Cytoxan Taxotere Chemo Ladies- February/March 2013
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Bluegrassharp - YIPPEE!!! So wonderful to hear that you made it through all 6 rounds and now finished with chemo!!!!! Hope you start feeling better very very soon. Just so happy for you that you are done with chemo!!! (Since you are heading to rads, check out the Miaderm radiation cream. Here is the link so you can read about it http://miaderm.com/. It can be purchased on Amazon. I know several gals who had rads that used this cream. It was recommended to me by another BCO gal whose sister is a radiation nurse. I did not have rads and didn't find out I wouldn't be having rads until after my 5th round of chemo but I checked out the rads so I would have an idea of where I may be heading.)
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BGH, good to hear from you! congrats on your last chemo! I hope your do-less ends soon! Good for you for getting out of the ticket.
While I was on the train to Tuscon, I decided to have dinner delivered to my sleeping car. The attendant came by to take my order. After he left, I realized that I had taken my hat off and revealed my mangey little hair-do to him! I laughed at myself and put the hat on by the time he got back with my food. I wondered what he was thinking, although he never made it obvious that he thought I looked funny!
Thanks for all of your kind words and advice ladies. I was a good girl and started my steroids yesterday. My face is already flushed. One good thing, I am not feeling COLD, even though my thermostat is down!
SC, I'm sorry you have to go thru another surgery. I hope it goes well. You have really been put thru the ringer. Healing thoughts coming your way.
((HUGS))
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BGH, Congratulations! Yay!
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SC - good luck with surgery and healing. I am lopsided after Mx...but just pop my bean bag in my bra every day and no one knows the difference!
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Blue grass harp- LOVE your mamas saying!
SC- I missed a couple of days and my first thought to your post was get that tissue expander OUT! So I'm glad they are!!! You will feel so much better without a raging infection / and yeast infection and all...you can get a foob later!
joanm- why are you getting 6 tc and not 4?
I am 3.5 weeks out / DONE with TC and still weak and tired but yesterday I was OUT all day, appts and Costco and all over - I am making dinners and meals again...doing laundry and most of my 'tasks'...AND big news... I quit taking Ativan 2 nights ago and seem to go to sleep ok and get back to sleep again! AMAZING!! My thumb nail has cracked and split sideways so I think it's coming off - what else? oh my pubic hair is growing and leg hair, and I think my head as well...the top for sure but sides seem slimmer...I am hopeful daily about it's growth as my wig leaves dents every time I where it in my head!!! Now I am thinking it is 'hindering ' my hair growth to wear it too so not loving the wig...which I did about 3 weeks ago...
Seeing my MO Thursday for bloodwork and Tamoxifen and all...I am thinking I will ask/demand scans at summer...NOT 2 years from diagnosis like he recommended...I will see if he can convince me to wait or if he will cave to my 'horrible patient' demands...:) NOT sure I even want them...the thing is my friend in town had BC last year and was good and done with chemo and radiation and all, no scans...then she went in for pain in chest and they found it had spread to her chest wall!!! and been growing the last year! Her MO said 'there was nothing they could do for her'...so now she went to Houston and is being treated there for 4 months...hoping to kill what's on her chest wall...they also did a '2nd' mastectomy!!!- which I have NEVER heard of...anyhow that's why I'm sortof wanting scans to prove it's all gone...and didn't spread --she told me to make sure I get them...just not sure I could Handle getting them...they scare me!!!
Keep the faith- funny train incident with the hairless look..!
LOVE the no getting speeding ticket with this also! ONE PERK!
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Bluegrass - I plan to milk this for all it's worth.
SC - I've known you since I joined here and wish you nothing but all the best for your well being.
I want to share with everyone that I opted for the Neulasta shot after my 2nd TC. My MO didn't think it was necessary but I was tired of living in a bubble. So far, I think it was a very good choice. However, they told me I only needed to take the Claritin for a few days after the shot and so I skipped it on Sunday. By Monday I was in so much pain I needed pain meds that I try to avoid. Lesson to this story: The Neulasta works well for me as long as I keep taking the Claritin.
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audra, thanks for posting your progress. It sounds like you are doing as well as you can be! Good to hear that you are getting some hair growth and some sleep w/o meds! I am wondering if a chest x-ray would be beneficial if your tumor was close to the chest wall. I may ask my MO about that, as mine was close. But, I guess there may be scar tissue also from the surgery...mine was a LX...idk. Having to have rads, I am leary of anymore radiation than necessary, though. I hope your friend gets receives some good news with her treatment.
WW, glad you got the shot and the Claritin helps!
I am officially done with chemo as of today!! whoo-hoo! Went to lunch with my friend and celebrated with a glass of wine. Then, we went to a little cafe for coffee and dessert.
Neulasta shot on Thursday. 3 Wk follow up with MO to get the next treatment started.
Stay warm ladies!
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Keep the faith-
NO, mine was in breast tissue over an implant...I had breast implants and they might have helped it NOT to be near chest wall...??
Seems I just try to find things to worry me about this...and the chest wall girl emphatically told me to get scans so I feel I should...I wonder why they don't?? Just cost? Insurance? Seems to be they would want to see clear scans or good results after treatments?
Running from= love that you 'pop your bean bag in'
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Audra - As I understand it, Breast MRI will not expose you to extra radiation and will pin-point any tumors. PET/CT used injected nuclear contrast and does expose you to radiation, but it will show "lights" anywhere there's cancer. I don't think either are cheap so maybe it's an insurance thing? My MO prefers the PET/CT to check for recurrence - scanning mid-scull to knees. He preferred the MRI after my first batch of chemo so they'd know exactly what tumors were left that the BS was facing for auxillary lymph node dissection. I understand I'll get a PET/CT every 6 months for the first year post chemo & surgery and then the tests will drop back to every year.
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hi, audra:
I am getting six treatments of TC I think due to the tumor in left breast that was 4cm, grade 3, oncotype dx score of 32 and it was deemd a very aggressive tumor. Anyone else with 6 treatments of TC and why? Thanks for asking.
Joan
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joanmj58- I had 6 rounds and knew that I would be having 6 rounds after my initial appointment with my onco. I did ask my onco about why this type of chemo and the number of rounds. She had studied the pathology and my situation and said that this was the best route for me. It was also recommended by the hospital tumor board that met on my case prior to my UMX and to starting chemo. If I had to guess why, it was because of size, grade and Ki 67 score. (I also have a rare form of bc which represents less than 1-2% of all bc. My bc was found inside of cystic structure aka encapsulated.) I remember thinking that I was going to be left behind by the chemo group that I had joined on here but it turns out that I was one of the first to finish chemo. The tumor board met again before my 5th round of chemo to determine whether or not I would have rads. Fortunately I did not. I started Tamoxifen 4 weeks after having my last round of chemo. I know one can start to question if 4 the right number... is 6 too many and in the reverse is 4 enough and why am I not getting 6. It is fine to ask your onco those questions about the number of rounds and what has gone into determining the appropriate number for you.
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KeeptheFaith - Hoot Hoot!
It seems quite common for some to have 6 TCs and others 4.
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SC, I am so sorry to hear that you are still in the hospital. I can't even imagine your frustration; wish I was closer so I could hang out and visit. Boredom there is the worst! Hopefully once this infection clears, they will be able to replace the TE in a couple months. There should be somewhere near you that specializes in mastectomy bras. The bras and prosthesis (which you can use temporarily) should be covered by insurance.
BGH, So glad you are done!!!!! I hope you feel better and better each day!
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From my reading, it seems to me that Taxotere, etc (my first 6 tx were that with Carboplatin, Herceptin & Perjeta) is usually 6 rounds and Adriamycin, etc (my 2nd round chemo was A with Cytoxan) is usually not more than 4 rounds. I expect in addition to large tumor sizes and Ki scores, it's also related to your HER2 status. I'm HER2+ and Herceptin can't be given with Adriamycin since they're both toxic to the heart. And related to your ER/PR status - and since I negative on both there are no other options available down the road like tamoxifin. So it depends on your combo drugs & your personal stats. Always lots of variables.
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keepthefait… Congratulation on last
chemo. What are you going to do celebrate later on? Did you take the Taxotere
on the last chemo?audra67- Yipee..done with chemo. What are you going to do celebrate later on?
I
am still exhausted from the last chemo.
I’m 3.5 weeks out. Maybe we both should get a “worry” jar. Neither my MO nor OS think PET/CT/MRI are
necessary. Which worried me for a while,
but then I just let it be.Bluegrassha…
Congratulation on last chemo. What are you going to do celebrate later on? How
are you feeling?joanmj58
You are getting closer to the end of this treatment. How are you feeling?Susan0369- How are you doing?
MinusTwo Have you decide what music
they should play for your PET/CT?joanmj58- Some women will get 6
TC, a lot depends on the tumors
competition.Warrior_Wom… I was in so much pain
with the Claritin, that I had to take Claritin D since in our state you are
regulated on how much you can buy I’m sure I’m on the meth list. I hope the bone pain gets better for the next
time. The nurses suggested taking it the day before the shot too.SC- Sending every prayer and healing energy
your way. You could try to make up some
new hospital games to annoy the staff Jmomat927- Last chemo!
What are you doing to celebrate?
How are you doing?If I missed someone I hope you are doing well. Thank you all for sharing.
We keep on moving on.
This is the first week since diagnose that I haven’t had one doctors
appointments, meetings, shots, bloodwork, chemo, etc. I’m at work this week doing 10 hours days and
man I’m tired. Last chemo I had a lot of
fatigue. - Peripheral neuropathy isn’t helping
for standing on my feet or walking. Next week I get to go back to being a “cancer
patient” with doctor’s appointments and blood work. I want to run a 5K in next week, but I barely
had energy to walk 3 blocks today. We warriors keep on moving forward.0 -
FDM, good to hear from you! I hope your SE's get better soon and you can run again. What kind of internal radiation will you be doing? My rads will start next month and I am curious as to what options I might have, if any.
SC, how are you doing? I hope everything is looking better.
I hope the rest of you are doing well also. It's so nice to hear from everyone.
I did get my MO to reduce my Taxotere by 20%, reluctantly. I reminded her that we were on the fence to do chemo anyway, with my low/intermediate onco score. She didn't think my SE's warranted it, but my face was getting red for a week or so last time after my steriods wore off, so it made me feel better that she agreed. Much more fatigue also. Maybe I just felt like I wanted to be in control of something!:) ha! I am telling myself as each day comes that this is the last day of chemo day number 3, 4, etc!
I gained 8 lbs since I went to my Mom's! UGH! Will have to start walking again. Thank goodness the weather is starting to warm up.
((HUGS)) y'all!
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Fairydog-
I am 4 weeks out today- woooohooooo! Loving knowing I will not have more chemo but still wondering when I will quit thinking about chemo/BC...
I have enough energy to walk through Costco and another store in one day and out to lunch...I spent the other day out from 10-6 and then wasn't exhausted just tired...so it must be getting better...but then I have days around house not doing much too...I am sleeping better and not taken Ativan to sleep for 4 nights..I have just been tired and went to sleep...so that's good.
Going to see Mo today and haven't been in 4 weeks! HATE to go back! getting bloodwork and Tamoxifen I think...hoping all is good..
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Hello, I am getting my 2nd TCH as I type. Has anyone driven themselves to their chemo apts? I did so today with my daughter on-call for issues and my sisters are pretty upset with me. Thought I'd ask others experiences/thoughts.
Another question, does anyone know if there is a way to search within a topic?
Thanks for any responses,
sandy
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sammie10 - I drove myself to every chemo appointment & every neulasta shot & now driving myself to 5 weeks of radiation every day. I really enjoyed the 8+ hour chemo days that I could read, sleep, listen to music, etc. and not have to worry about someone else sitting there. The only time I had to find a driver was for PET/CT and MRI because I took Zanax to help relax enough to lie still.
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Sammy- I couldn't have driven at any as he gave me IV Ativan to relax me each time and I was 'drugged' leaving the place...it worked well for me..:) MY husband insisted to go with every time and the time flew for me- 6 hours...including blood work before..
I think you go to the left side under search?
Headeast- You are a tough cookie!
Keepthefaith- what was your oncotype? mine was 21 which is low/intermediate too... and I am counting also!
Just went to MO apt for 4 weeks post...sortof a downer as he said - you are cured today, but this is something we take day by day and you need to adjust to a new you, the old you will never come back....wow! I don't want the old me not back! I know what he means but it seems just sad...got rx for Tamoxifen and was told all of the most common side effects (which I do not want either) and told to stay on it for 10 years...! I go back at the end of March...
Was disappointed my WBC only at 4 !! He said that can take up to a year to become normal again!
I am flying on airplane in March and April and HATE the sneezing and all when I am healthy! This will freak me out if it doesn't go up again!
He also said I should stop the Tamoxifen a day before flying day of - to prevent more of a blood clotting risk...that scares me too.
My husband was thrilled with the visit and happy and said sounds great! Wish I could have his attitude about it all...
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Audra, I don't have any se with the Tamoxifen, you will be fine. The pain on my right side (cancer side) after the exchange is still there. Not awful but can't lift anything with that arm yet, since I feel pain if I open doors or carry anything. The PS said two weeks without doing a thing, that will be tomorrow.
About the going back to your own self. I think we will. It is difficult because we don't have hair and have to use a wig; can't move because of the pain of the surgery exchange; and in my case I gained weight during chemo and have to lose another 20lbs, I don't fit in my clothes.
I figure it will take a few more months until we get used to be back to normal. I do believe we will be normal again!
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sandy - I could drive to but not from. The fatigue and chemo brain are too great for a 2+ hour drive home.
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Headeast - My favorite quote of the day, "I do believe we will be normal again!"
Sammie - After 2 TCs I believe I could drive myself.
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Audra, Who is he to tell you that you won't be back to your old self? Other than my annoyingly short hair, I am very much back to my old self. The only difference is that I don't sweat some of the little things, I have more empathy for people in these situations, and I try to carve out time for me each day. So maybe I am not back to completely my old self...maybe it's the new and improved me. I don't really have Tamoxifen side effects either. I had a ton more hot flashes for about the first 3 weeks, but then they eased off. As far as infection prevention (especially when flying), I take something called EpiCor. I am NOT normally a supplements person, but our City pays for half of it and after I read an article in our local paper about how it was discovered, I wanted to try it because I used to get pneumonia several times per year. I have not gotten pneumonia since, other than one stint where I ran out for 3 months and decided to see how I did without it. My MO allows me to take it, and actually allowed me to take it during chemo once he looked back and saw how often I used to get pneumonia.
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audra, my onco was 21 also. MO said it was up to me to do chemo. I will be anxious to read the tailor clinical trial results on intermediates when they come out next yr...I got my report and it looks like about a 4-5% benefit, the best I could read it; but that's including Tamoxifen and using CMF as a chemo. Better than nothing! Surprised to hear that it could take that long to get blood counts back to normal. So far, I think I have been lucky with that.
I don't think it would've been a problem for me to go to chemo by myself, but was nice to have my friend there with me, especially the first time. We have a great group of nurses and patients most of the time who will leave you alone or chat with you. I didn't take any additional meds and about a 30 min drive.
I'll be doing rads next and then Aromasin...? not sure. Follow up mammo every 6 months on rt and 12 month on both. Will have to ask her about bloodwork. She did say I will need a bone density test prior to hormone therapy, but said an estrogen test wouldn't mean anything...bc so many women with low estrogen still seem to get ER+ BC even as they age.
KBeee, agree, Hopefully this will make all of us a new and better normal! I agree, that I have become more about me instead of trying to make everyone else happy in spite of my needs...I hope I am finding the right balance! More empathy, yes, but still need to work on that some more! What a way to find it, though! LOL
((HUGS))
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Audra--- Sorry you are feeling rather down after your MO appt today. I am who I am today because I decided the day I got diagnosed that I wanted to do everything I could to help myself. At that time, I know I wanted to whatever treatment that was available and prescribed for me so I could resume my life without having cancer. Yes, I have only one breast now, my hair is short and not waist length straight hair I had at diagnosis and I am very much alive. I have been on Tamoxifen since September 2012 and don't know and don't care how long I will be on it. I view it as one more treatment in my arsenal to help prevent reoccurrence. I take it for myself, my family, my friends and in honor of those triple negative people who would do anything to be able to have one more treatment.... one more drug available to them. I have had minimal side effects from the Tamoxifen and whatever side effects I have experienced... I accept them.... they are what they are. ( hot flashes, bone aches//// no weight gain).
Before you get on an airplane for upcoming trips, go ask your MO for some hospital grade surgical masks so that you can wear them if you want to to get on the plane. Take some alcohol wipes to wipe down the chair tray and arm rests. It's okay if you do that because you are trying to take care of you. I don't know if you have an LE sleeve and hand gauntlet. Although I do not have LE, I wear an off the shelf sleeve and hand gauntlet when I fly or change altitudes/travel through the mountains. I flew on a trip less than 2 months after I finished chemo. Yes, I was nervous about going through security, wearing my LE sleeve/gauntlet, being around germies, etc. But I knew that if I wanted to go on this trip, I had to get passed my fears and do what I could do to make myself comfortable with everything.
It does take some time for one's body to recover from the chemo. I understand about having low blood counts because I still have counts that are not normal. But I do everything I can to eat well, rest and exercise and take care of me. One of the most important things that has helped me is keeping a positive attitude about things and life and moving forward. I'm the kind of person that is at her best when the mind and body are in sync.
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keepthefait…I have to fight to get
IORT (intraoperative Radiation Therapy). I’m 36 and Felix is interesting to the
doctors. I have asthma. They can do this
in women who are postmenopausal. I meet
with 3 ROs. One told me he would not do rads, because Felix (tumor) was right
over the center of my heart, the other one said she would not do a boost due to
tumor location but do 37rads, and the third had cranial rectal inversion. He told me he would
do a boost and 35 rads because that is what works, but he said he had no idea where my
tumor was because he didn’t take time to read the report. He was quoting me statistics and I told
quoted him my statics of my cancer at my age and told him, statics can be
manipulated and doctors don’t know for certain how statistics will affect and
individual. I kept researching about rads in women under 40 and secondary
cancers, recurrence rates, heart and lung issues, and other things. I didn’t want to take the heart risk, because
heart issues run on both sides of my family.
They are pulling my ovaries, I asked do the doctors, why couldn't they do the
IORT since I would then be postmenopausal. We have to go back for a reexesion.
I was luckily enough to find two doctors who are willing to think
outside the box. I go to a research hospital and my OS told me that his
argument to the tumor board was I requested, I’m pulling ovaries, and Cancer
Center’s of America would do it for me.
I post their link, because they have a cool video of it.
http://www.cancercenter.com/breast-cancer/iort/
audra67- Glad to know you are able to walk in Costco.
I keep thinking I will get back one day.
I’m just losing patience with cancer.MinusTwo You are my hero to drive to
chemo. I was so loopy I think it would
look like I was a drunk driver.Headeast I gain weight too. We will
lose it. When I have to fight to work
out I will be like chemo you will leave today.Warrior_Woman- My favorite one is
“today I fight, tomorrow I decide”KBeee Good for telling Audra about
going back to old self. Thank you for
talking about EpiCor.Melrosemelr… Great advice on the sleeves, My OS told me to
use 3” ACE bandages. He says they don’t’
get stretched out as much as the sleeve.I hope everyone else is
doing well or at least fighting. If I missed someone I'm sorry watching the men's figure skating. Man those are some tight pants0 -
overjoyed my last chemo is tomorrow but man am I dreading the side effects.
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Yahoo Quirkygirl! So glad chemo will be in your rear view mirror. Each day you have the side effects, check them off because it is your last time with them.
FDM, It sounds like you are really on top of things, and I am glad that you have doctors who are willing to think outside the box.
To all in the chair this week, wishing you minimal side effects nad maximum comfort.
I had to bring someone to my first appointment, but other than that, I drove myself. It was only a 20 minute drive though, so not far.
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FDM, thanks for the info on rads. My tumor was at 3 o'clock, rt side, so is also close to my heart. It looks like I will have to get some questions down for my RO...
QG, good luck on your LAST chemo today!
I hope the rest of you are feeling well!
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