Calling all TNs
Comments
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Ok. Just got back from MO and got my treatment regimen and wanted to know if anyone else had this type of treatment. I was told Adriamycin/Cytoxan for 4 biweekly cycles and then taxol for 12 weekly cycles! I was not expecting it to be that many treatments but was told this is the standard? I am to start June 28th. I am a wreck about it.
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melissa119- I had the exact same treatment. It is standard treatment. The 12 weekly Taxol seems like a long one but it's easier on the body and lessens the SE. Good luck!
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Thanks babs37.. That is what my MO said. She said the 12 weeks is like a vacation and really easy... Don't know about vacation but we'll see I guess. How did you do with this treatment? I have 2 kids that are going to be home for the summer and am worried about side effects. Hoping I will not get many but one never knows
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Melissa119 - that is the exact treatment I had, but reversed with the Taxol first. You will learn that there are many different treatment regimen's, but my med onc told me this was the most standard combo used. There have been some recent posts on here from those in treatment, that the medical community is now thinking that the A (adriamycin ?sp) of the A/C may not be effective enough to warrant it's use. (I'm sure somebody will pop in to discuss that).
The Taxol was definitely the easier of the two. I don't know if that was because I had it first, but I used to refer to it as my baby chemo
But please be assured that this is a common treatment, and please don't hesitate to come back with questions.0 -
Another thought Melissa, if you have children home for the summer. Ask your med onc if she has any problem with reversing the order and putting the Taxol first. Then you would go thru the summer on the easier of the 2 chemos. Never hurts to ask.
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melissa there is a newer study out that suggest that Taxol first works better for TN. I do not know where I found this but I am sure someone will be along with the link. Are you on the tnbcfoundation.org site? Post there and you will get response so fast on that question. Then if you decide you want to try it that way you can print it and take it to your MO and see if they are willing to do it in that order.
Maggie
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I had what they call the dose dense treatment, which is adrimycin/cytoxan every two weeks X 4 treatments (lasted 2 months), and then dose dense taxol, every two weeks X 4 treatments (another two months). I feel sorry for myself that I had to endure dd taxol, when mostly for many others, they try to divide it into 12 smaller doses. Good thing was it was for a shorter period of time.
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Ladies, in response to Riley's post, I just want to add that we are women, we talk about everything, we just have to, right? That's the way we know how to function. The totality of our thoughts have to be let out, maybe that's why this forum is so popular, we are just being women, being our natural selves. Our thoughts and viewpoints may not match with others at times, and we may even feel hurt sometimes when we don't agree, but ladies, I don't think we can function and be ourselves just by talking about TN only. I enjoy reading everything on this forum and learn a lot from you all, thanks.
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Lovely--me too...that taxol was rough!! Only good was no nausea on it and at least it went by quickly!! Any more news for you and your thyroid or did I miss it xoxo
Maggie
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Melissa- When I did my chemo my son was 4 YO and was with me all the way. I was fine on AC. The roughest part for me was the Neupogen shots(for WBC) that gave me aches and pain in my upper body for a couple of days every round but never too much pain for me not to take care of my son. And during Taxol I had 1 day of bone pain every week of treatment but it happened to be on Saturdays so my husband could take care of my son that day. The other days I felt fine. Don't be affraid to ask for help during your treatment. Family and friends will be more then happy to be there for you.0
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On the subject matter on this thread, personnaly, I love it that we can talk just about any subject and BC of course. I love to read about what's going on with our lives, work, kids, dogs, see pictures....... I love to read funny jokes (I miss Heidi for that
). Makes it fun to come on here and never know what's going on. It's good to keep it "lite" somedays and be here for help when needed. 0 -
Melissa's post is a perfect example of how this thread works. We can be all silliness, jokes, pictures and even "agree to disagree" posts, then on a dime it turns to seriousness when someone needs help with a question. This thread is perfect.
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I am with Babs on this. I feel like we should be able to discuss whatever we want. If it is a subject you dont care to read just scroll past it. I do!
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Wish I had thought to scroll past all the posts about the chocolate cakes, etc. I'd probably be 20 pounds lighter now!
Doreen
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Thanks everyone for your thoughts on my question on treatment. I am just so scared of what is to come with the chemo. And i think i handled losing my boobs better than my impending hair loss :-(.... Also another question. Did everyone have a port or do the IV. My MO gave me the choice. She said I could try the first one with IV and see how it went.
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Melissa..how old are your kids? My kids were older 18 and 20 but we were super busy with my son's graduation plus all the parties and getting him ready for college when I was going through chemo during the summer...I started the end of April and was done the first week of August...4 AC and 4 taxol..dose dense...no..it wasn't easy but I found I felt better when I kept busy than when there was nothing going on....keeping busy kept me sane and made the time go faster...good luck to you...chemo is freaky but you may find that you will handle it better than you think...I hope so!!! Oh...I had the IV for 8 treatments...now 3 years later..my veins are OK...maybe not as good as before but they are ok...
and hair loss..that is a tough one....it's just weird....to be hairless..like everywhere..but..I did the ac first and the hair started coming back during the Taxol...just a little..but it was there...I was basically hairless for about 5 months...
Riley..sent you a pm
You ladies said it all about this thread....talking about anything and everything....and making sure that we take care of each other with our current treatments and onc visits and fears and TEXAS (lol)
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Melissa, I had a port from the get-go. because of the axillary node dissection, it is usually recommended that your affected arm is not used for IV's, lab draws or Blood pressures. So that leaves the other arm for everything...I didn't want my good arm going to crap because of how harsh chemo can be. But it is your choice and only you can make it. Do what feels right for YOU.
Glad you found us...we are here to help in anyway we can.
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melissa- I did IV but if I were to do it all again (and I hope will never have too) I would go with a port. After 4 AC, 12 Taxol, blood test almost every week during that period, that makes for a lot of needles and my veins are shot. Almost all of my chemo was done in my right hand. Some nurse were not good in finding a good vein so it hurted and near the end of treatment, good veins became harder to find.
On the hair loss thing, I was prepared with a nice wig, scarves and hats before starting my chemo. Before loosing all my hair, my son and my husband shaved my hair together. I felt it would be less traumatising for my son to participate and see the change with me, then to see his mom come out of the bathroom one morning totally bald. I wore mostly my scarves. In the beginning, when you loose your hair, your scalp is very sensitive and I couldn't stand my wig. I think I wore my wig 2 times in all. I was much more comfortable with my scarves. My hair started to grow back during Taxol
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Melissa119 I had a port and was glad I went with it. Not a problem getting it placed, and a breeze getting it removed. Best wishes for your treatments, no matter how you get them.
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Good morning Ladies
Don't worry everyone the cleaning bug only lasted one day, I'm back to gazing out the window again lol.
Heather hope your new job goes ok today. Must be exciting for you meeting all those new people. Thats right I remember you saying now that hubby was a Baker. Chemo brain. Hope he gets a job soon. Is the town you are living in a big one.
Karen - I too have to get my weekly blood drawn today. Did you put the sock on to warm so it made your veins come up.
That is terrible about your poor mum with neuropathy. Must have been dreadful for her.
So sorry you have to sell your holiday home. I won't be able to see it now when I come. How often do you get hurricanes and do you need to board up windows etc.
So you have witches in your family aye. I just knew there was something lol. Actually I have skeletons in my family. Apparently my long long lost grandfather killed all his kids. Guess thats one way of getting out of paying for the weddings lol.
We have a TV program on, on Sunday nights. Its called Junior Masterchef and I am blown away at what those kids can cook. They are aged from 8 yrs to 11yrs and this week they were cooking in Disneyland. Those kids just had a ball. I took my two girls there when they were 5yr and 7yrs and it was fabulous. You are so lucky to have something like that in America.
Kathrynn - oh dear now everyone knows you have a man in your house. You will be getting a reputation. WTF. Had any good wins lately?
Well, back for the 5th taxol tomorrow. I hope I don't wet my knickers this week lol. Better go prepared or do a Karen and throw then in the trash. Actually I'm getting a bit fed up with it now and feel like I've had enough. Still seven to go though and then rads. It's never frigging ending.
I do wish Inmate would let us know how she is going. Must be really tough for her.
Have a good day ladies. Keep well, keep happy and keep smiling. Annie
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Shout out to Inmate...miss you girl!
Wow...our family histories are coming out here aren't they...that's so cool OBX..a descendant of a witch..but was she really one? And Annie..got some violennce in your history too...?
I don't have anything exciting in my past...my dh's family is originally from Wales...not sure where my side is from..no one seems to know...I think I may be part Irish and German...past family names are Moore, Siegfried and Hershberger....does anyone dabble in genelogy here?
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Melissa, this is the great thing about this thread. You find out that we all made different choices along the line. There is no right or wrong, just what is best for you.
Navymom - you made me laugh remebering one of my go rounds at the hospital. I was never given the option of a port. They insisted on using my non-affected side. (they didn't know if the lymph nodes were affected). After I had my MRI and and th LN looked clear, I brought it up again. They told me the same thing and added oh BTW, after surgery you'll probably never be able to use the arm on the affected side for BP's or blood draws. I swear my head must have spun. After surgery. I'm never gonna be able to use the veins on the affected side and you're planning to destroy the veins on the other arm!!!!!! ( I don't think SO! I don't plan on surviving this freaking disease, to end up dying from a heart attack because no one can find a vein for an IV). I assure you I won that battle.
The other thing I had to fight constantly was my IV placement. I made them start with my hands and gradually work up my arm to save the larger veins for the A/C (16 treatments in all). My veins are fine after treatment, and because they removed minimal LN, I'm allowed blood draws and BP's on my affected side.
Begin to think now what you want to do about your hair. (it sounds like this may be a hard thing for you). Whatever choice you make, go out now before treatment and select hats, scarfs, or your wig. It's harder to face it when you're feeling lousy. I went with a Shave The Head Party with all my sister-girlfriends (we had a blast! ) and wigs in every color and length. (one tip, if you go for a synthetic wig, shorter styles don't become split and frizzy as quickly as long styles do)0 -
Thanks, Titan.
I had Taxotere instead of Taxol; is that less usual? I did have the Taxotere with the first 4 rounds, and the A/C the last 4, so that's.. good?
I had a port from the get-go and was very happy about that. It sure made chemo and lab draws easier, although they did put in the worst spot for catching on my bra strap (don't have to worry about that now) and snagging on my purse strap.
Mom has done some geneaology, esp. now that some records are online. Her father was born in France and came over with his parents when he was 4. He married the daughter of German emigrants and Mom has traced them back to Germany (Freckenfeld) in the 1690s. Dad's side of the family is more of a mystery. We know they're also heavily German, but we don't know where the branch that carried my surname came from. Either English or perhaps Anglicized Germans. Hmm, I'm seeing a trend here...
Kathy, I only had 2 lymph nodes out, but I still won't let them do blood pressures, sticks, or IVs on that side. I'm stubborn, which I've been told is a German trait,
although I don't believe any one group has a monopoly on that. Am I right, ladies?0 -
My brother and sister and I bought our mom a year subscription to Ancestry.ca for Christmas but she didn't want it. However, she did do a free two-week trial and traced my dad's side of the family back to Ireland a few generatons ago. My mom's family is from Scotland.
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OBXK - please let me know if you come up, I'd love to meet you.
Cocker - "You will be getting a reputation. WTF. ". * Pats Cocker's head, fondly, puts on best poker face* How sweet that you would make the assumption that I don't already have one (ROFL). Be well tomorrow and hang in there.
Riley - if I remember past discussions on here, Taxotere is usually only used for people who have an adverse reaction to Taxol (insurance companies don't want to pay the increased cost for it) but may actually be more effective (anyone who remembers please pipe up) . "Monopoly on stubbornness". Haven't spent much time with a Polish family I assume, heheheheheheeh.
My Mom did some genealogy, but she already knew the only secret. Her father made moonshine during Prohibition.0 -
Ladies
Can you answer a question for me. If I am the only one on active treatment (I think I am) apart from Inmate am I allowed to stay on this board or do I have to go onto another one where people are still going through treatment. Not sure what the regulations are.
Annie
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You stay right right where you're at, missy! (
EEk! I've turned into my mother! When did that happen?)Kathy, maybe I really did luck out with my clinical trial. Taxotere was part of the protocol. On the other hand, I got 8 rounds of Avastin, and who knows if that was of any use at all? It's a total crapshoot.
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As the dogs have had some special time on here lately I thought it time the cats did. This tickled me.
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Cocker - I think Riley answered you question perfectly. There are quite a few here in active treatment. (fretting about Inmate, Clowngirl and Minxie at the moment) Soon you'll graduate, and become one of the old-timers who offers advice to the newbies. This thread is for all TN's no matter where they are in the journey.
Teka - I hope you'll reconsider and be back soon.0 -
I'm still active - one week past 3rd CT treatment of 4. Last one on June 19th. No rads scheduled. Been pretty lucky with the SEs so far.
As the "mommy" of 4 cats - I laughed my arse off over that picture, Cocker.
I have always been pretty amazed by the people who come back to this site long after they are done to share their experiences and post some positive vibes for the ones that are going through it. Although I'm sure most of us would love to put it out of our minds once we're done, I hope I will remember to come back and help out the "newbies", too.
Doreen
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