Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Anyone starting Chemo in Feb?
Comments
-
Okay, so here's the scoop as I understand it.
Because I had neoadjuvant chemo, they're not certain exactly what the node status was at diagnosis. Assuming it was at least three (the three that showed with micromets following the bilat) that would put me at Stage IIB. It's for this reason that the new onc felt that radiation would be preferred but she wasn't strongly recommending it. Then she read the JHH path report which states 'extensive angiolymphatic invasion'. This path report was for tissue taken during the bilat. So, despite the chemo, and despite the fact that the chemo reduced the tumor from 3.5+cm to 2 mm, I still had micromets in three nodes and 'extensive angiolymphatic invasion'. She said that the recommendation from the tumor board was mixed -- one strongly in favor of more chemo and radiation, one strongly against either and the others in between. With the JHH path report she now believes the best course of action would be more chemo and radiation. She said that if I'd been very against the idea of more chemo, she wouldn't push it because there isn't much (if any) data to support the efficacy of this approach. She did say we're in uncharted territory here...neoadjuvant and adjuvant chemo (virtually no data on this), mastectomy and radiation (some data on this one). I sought the second opinion because I thought if there was a chance that more chemo would help (after I found out about the nodes) I would do it in a heartbeat. So, here I am...starting again. Carboplatin...I've read several good articles recently about this one... SEs are minimal (my hair will probably survive and my nails can continue to grow back)... just the typical stuff: fatigue, nausea at best...tingling extremities and hair thinning uncommonly, kidney problems at worst.
I'd rather err on the side of too much treatment than not enough. You're right Carynn and Karen, best do it now than to find out 6 months from now that I need more treatment. What put me over the top in my conversation tonight was the onc telling me that a local recurrence to the chest wall or skin would be considered stage IV, even though the prognosis would be somewhat better than distant recurrence. Yikes! I didn't know that. So, radiation is looking better all the time, in spite of the effect it will likely have on these new puppies (or, at least, the left one), the risk to my heart, the increased risk of lymphedema...all that stuff.
Sorry for the longish post...I know I'm babbling...I'm still reeling a little. I think I'm setting a record here for the longest possible consecutive Tx following Dx.
Love you guys. Hugs.0 -
Twink, Hillary... your lovely smiles are so contagious... Hillary, why don't you go topless? Your hair is at least 3 times thicker than mine and twice as long... same for Twink's...
Twink, so sorry to learn you have another hurdle on your road... carboplatin is a very good drug, from what I read.
I join Carynn and the others: please stay here with us, we will circle the wagons just for you and be here for you when ever you feel like coming to visit and tell us how you feel. Hopefully you won't have harsh side effects. Did they explain to you how this drug works? You are probably relieved somehow, feeling "taken care of" more thouroughly. Big hugs to you, Twink... Well, Hillary and Carynn, you'll have to put the schedule up again...
Leah, I could not understand your point better: work is great (part of what we are and the talents we have), but not 20x7... fishing parties with friends are so very important too... I realize how much I had been missing a lazy summer like this one (where I work very part time...)... had not had one in years (of my own doing, mind you). It's funny that you mention Rosetta Stone: I had to edit a manual for their French module, and the concept seemed quite interesting (the French translation, unfortunately, was very poor, almost a redo). Language learning is a great mental exercise... and Italian is a language I really like (but I do not speak it, studied it at the Sorbonne for a couple of years, evening classes while I was already working as a french-Russian interpreter, made a few trips to Italy, and watched a lot of Fellini's, Antonioni's, Pasolini's movies... not enough to acquire fluency...)
Well, sweet friends, a good night to all... and a nice spring day to you, Alyson and Belinda
CatherineH0 -
How great you both look! I am jealous that you got to meet!
0 -
Oh, Twilah ... I'm so sorry ... I wish I could hug you again ...
Carboplatin is supposed to be great for us triple negs. You said you were starting Wednesday, as in tomorrow or the following week. Will you be doing chemo at your home hospital or where you got your second opinion? I'll pm you the name of my rads onc.
Hugs,
Hillary
P.S. I totally agree with a comment you made on the pictures page -- there was definitely no awkward silence! We could have talked for hours ...0 -
Hillary, that is the first pic of you we have seen! You are beautiful wig or no wig!!
Twilah, we knew you were gorgeous! Now, hell, so sorry to hear you will be coninuing treatment but don't you dare go on someones else's chemo cruise. We are all right here and will stay right here. You let us know how we can help and we will. I'm gonna PM you my cell number and if you just feel like bit**ing, call me. OK? We love you girlfiend and we are all in this crzy thing together!! Marsha0 -
Twink, this is one cruise I know you wish would end, and I have to salute your extraordinary bravery in continuing on. I too have heard great things about Carboplatin for the triple negs and that the SEs were minimal compared to what you have already gone thru. We will be here with you as you continue onwards - there will be no cruisers left behind!!
Head up, girlfriend. No matter what, you will kick cancer's ass back into the last century!!!!!0 -
You guys make me smile...ear to ear actually. Thank you.
0 -
Twink,
We are here for the duration. Actually carboplatin comes highly recommended my onc too if I should have a reoccurrence. I will be here. If there is anything I can do, holler!0 -
When I got registered on jan. 20, 2007, I was number 43999... as of this afternoon, the membership is at 55183... over 1400 a month.. isn't it awful? and women/men posting here are a fraction of the bc population... mind bogling, really... just reflecting on all these new diagnosed coming to these boards for support like we did... and still do... I sure hope the rate will slow down... it may just be an indication of the role of Internet in people's life as far as information gathering goes rather than an acceleration of disease being diagnosed... hopefully this is the case.
Just thinking out loud here... not even in a somber mood...
Wishing you all a lovely evening... or morning...
CatherineH0 -
Hi all..haven't posted in a while, but have been reading.
Twink...sorry to hear about more chemo for you, but as the sole carboplatin graduate, I must tell you that it is very doable. I had the taxotere at the same time, so not sure if the queasiness was from carbo or tax. Worst thing was that it makes you flushed, so your face gets red the next day. Zofran kept nausea at bay. never really lost all my hair, although it got very thin and I did shave it off when I had bald spots. I wish you well.
Glad to hear everyone else is doing okay...still waiting to hear about Tink and her baby.
I am on #20 rads. A bit itchy, sore underneath. Still have the rash under my arm and am on antibiotics for it. Not much to say. Not showing any signs yet of burning. Keep waiting for the other shoe to drop, so to speak.
Well..hope you all enjoy a nice summer (or spring) evening.0 -
Virtual hugs out to Twink today for her chemo ...
0 -
Thinking of you Twilah, indeed, hoping a non event at the bar... the good thing is that 3 weeks in between should make it easier to recover. Big hugs (((((((((Twink)))))))
CatherineH0 -
Darn it Twink, more treatments but better to be safe than sorry?
Hillary, you should go topless all the time, you are beautiful that way as is Twink!0 -
Hey everyone! Just wanted to check in and let ya'll know that our beautiful baby girl, Aubree, was born 8/8, 7lbs 5 oz and totally amazing. We are all in love with her especially my 2 year old he can't get enough of her! I can't believe after all the chemo and what my body is going through that she turned out so perfect. We are home and doing well, trying to catch up on as much rest because next Wed (8/22) I start taxol.
My hair is growing (yea) I'm going topless, started that about 3 weeks ago.....it's just too hot in Texas to wear a wig or scarf.
I've been trying to catch up on all the posts I still have some read!
Thank you for all of your thoughts and prayers!0 -
TinkC... wonderful news!!!! Now we want pictures of the family... Take real good care of yourself to go through Taxol treatments as painlessly as possible...
I am so happy for you that Aubree came the day you told us and that her little brother is in love with the baby-sister...
Wishing you the very best, Tink, thinking of you a lot,
Big hugs,
CatherineH0 -
Tink -- That is such wonderful news!!! Will you be doing dose-dense or weekly taxol? Are you going to stay with the Feb cruise? If you had a chance to read, you might know that Twink has to do more chemo, so we will keep both of you company.
Hugs,
Hillary0 -
Thanks for all the warm hugs...I felt them today. It's amazaing how much easier this is when you've 'been there done that'. Different clinic but similar drill...although the infusion rooms are private...woohoo! Anyway, my husband accompanied me today (his first trip to the bar ever)and, you're right, it was uneventful. By all accounts, knock on wood, carboplatin is supposed to have fewer side effects, so I'm feeling optimistic. We proceeded to take a wrong turn on our way out of Philly and end up going 40 or so miles out of our way. Wouldn't have been so bad except that it was a boring freeway ride instead of a funky back road cruise. Oh well...cost me three times as much for tolls...
Hillary, the onc recommended your radiation guy. I'm not sure if her office is setting something up for me or not. I'll check on my next visit. Looking forward to another lunch...timing-wise, this should work out as I'm on deck at 9:40 and will probably be done by 11 (you know the drill, right?). I'll be in touch.
Hugs to everybody. I'm taking the rest of the week off to laze about (and finish staining the back deck).
Congratulations Tink! Welcome Aubree! Yes...pics would be wonderful.0 -
Tink, thank you for letting us know and congratulations to you and your family. Beautiful name, Aubree. Please stay with us and let us know how you are doing!!
Karen0 -
Twink...so glad carbo went well...sorry about the tolls, though. You will be fine. I only felt a little tired and queasy. But was able to function...do the fun stuff, you know, laundry and cleaning etc!!
Tink...so happy for you and family. Aubree will be a joy in your life. Can't wait to see some pictures.
Love,0 -
I know a few people have mentioned their plans for follow up but could you please tell me again.
My rads doc wanted to set up a mammogram for follow up. My tumor was never found on mammogram. (A spot was found on the inside part of Left breast, during ultrasound it could not be found and while radiologist was telling me it was nothing the US tech was moving the wand around the outer aspect of my breast and found the tumor)
I guess I have no faith in a mammogram finding a tumor. This one had already spread.
What are your plans?
Does anyone know of a standard for followup?
Thanks ladies.
karen0 -
Karen,
I found the ASCO (think that's the acronym) standard for breast cancer follow up care and the approach has been confirmed by two oncologsts now. Visits every 3-4 months for the first couple of years, mammos annually or more often. It doesn't recommend MRIs or PET scans as part of the standard. It's pretty bleak...takes a 'wait and see' approach. For what it's worth, you should be able to google it...I actually think I pulled the document from the American Cancer Society website but I can't recall for certain.0 -
Karen, being in a study means more regular blood panels+markers and regular echocardiography (ultra-sound of my heart)... until 3 months after last avastin (December 11). Then I guess mammos won't be in the picture for me, but I'll see the onc for the next 10 years (every 6 months, then once a year) so they can see whether the protocol (abraxane+avastine) protected the women in the study for at least 10 years... let's hope...
Twink, that's one out of the way... enjoy "fare niente"... and I hope your deck stain is not too toxic...
Sweet dreams to all, and happy spring gardening to the South hemisphere bc sisters...
Hugs,
CatherineH0 -
Tink - what wonderful news for you and your family. Warm, warm wishes to you.
Twink - the countdown begins (again)! Maybe I can get down for lunch one of the infusion days. My next scheduled trip is the 19th - 21st of September but again, it's a hectic schedule with babysitting 5 other staff members.
Gotta run - meetings today.
Hugs to all!
Phyl0 -
Twink -- I've already got your dates written into my schedule. Count on a lunch everytime!!
As for follow-up plans, same as everyone else -- checkups every three months for a couple of years. I'm pushing for MRIs in addition to the mammograms, given that I've got dense breasts as well as LCIS in the "other" breast, putting me at high risk for recurrence.0 -
Tink, oh sweetie congratulations on your baby girl. What a beautiful name Aubree, and we can't wait to see her picute (yours too!) Can we all be honorary aunts???
Twilah, hanging with you thru all this. I am meeting a frined from another thread today in Orlando. (She's from California visiting relatives) I had met a couple other girls a couple of months ago and like you and Hillary, seemed like old friends getting together to catch up.
Phyl, how's you rad burns doing? I guess you and I had the big burn with the mast. site. Mine is doing much bettre. Couple of scabs still there.
Catherine I had to laugh on the rad thread you saying, "finish up and come back home" (to this thread). Yes it will be great when we are all done grilling and can let that thread DIE. hahahaha
Karen, I have no clue about follow-up just that I will be watched closely. Whatever that means. I can't even get anyone to lay claim to the responsibility of flushing my port so doesn't say much to me about "close watch". I never heard from the pelvic/vaginal ultrasound from over a week ago so assuming that was OK. LOL
Terri, you on the down sweep for counting off your rads. Won't be long now and you can say adios to the grill also!
Hey Jan you wild women how are you?
Leah, your procedure is, I believe next Tuesday? We got your back girlfriend. You will breeze thru. Yes we have got to get dates booked for the beach so you g uys can do your air reservations also. I will get on that!!!
Carynn, how are you sweetie? Well I know for sure you are tired. Some of that is just that dang daily zapping. I keep telling myself this is just a very long bump in the road of like and "normalcy" will return eventually. Hang in there and get lots of rest.
Love you all, Marsha0 -
Sigh...I guess I'll have to commiserate with y'all here on rads, assuming they follow chemo (after October 17th). You're a great bunch to commiserate with so I plan on benefiting from all of your experiences when I get to that stage.
Dates for Phyl to contemplate joining Hillary and I for lunch (yay Hillary, I'm so glad we can do this regularly...um, sorta): September 5, September 26 and October 17.
Feeling pretty good today, no real change yet other than the decadron buzz last night that kept me up past midnight.
Terry, did you have to take decadron for the three days following treatment? They tell me it's to counter nausea but I managed the AC without nausea so I'm thinking I might be able to skip the steroids. I know I had to take it for three days (day before, day of, day after) around the Taxotere treatments, but I scrimped on that too...maybe that's why my nails are falling off and my joints ache like a 90 year old lady.
Ohhhh Marsha Marsha Marsha...do let's set that February date...was it around the 24th? I am sooooo ready for a week away. Could we do it in November too? Hehehe...0 -
I'm going to post a pic of my new boobs on the blog...shock my dad and others. Oddly, although I've always been quite modest, I don't seem to feel that way about these new appendages. Might be because everybody and their dog has fiddled with them for the last 6 months, might be because they're nipple-less, might be because I don't feel like they're really mine....weird! Watch now, Yahoo will rate my blog mature and I won't be able to keep it open to the public. Ha. Just silly thoughts this morning...too much time on my hands and chemo in my brain.
Hugs girls. Hope the crispy critters are softening up and healing. Remember those Lindi skin products...supposedly designed for rads and chemo. I love them, bought some more at the clinic on Monday but you can order online too.0 -
Twink, you are so funny... "mature site", eh... it's interesting what you have to say about being unsure these new appendages are "you" or not...
Nice to see a few of you here this morning... and in good spirits...
You enjoy your day, now...
Hugs,
Catherine0 -
Congrats Tink! I don't know how you did it being pg and dealing with BC, talk about a double whammy!
Tommorow is my first 3 month check up with the BS, will ask about my genetic testing. Then supposed to have a mamogram in November. I too think its weird a mammogram is ordered when it was the MRI and ultrasound that found the worse tumor!
Will be leaving shortly for a nice lunch and chat with the biker friend who drove me to rads the last two weeks. We haven't done lunch since rads was finished in May but our hubby's and us went out for supper after a biker meeting last month.
Looking forward to a cooler weekend after a week of over 100 temps. The heat doesn't mix well with hot flashes. I haven't gotten back on the trike since our vacation due to the heat and not being able to handle it. But hubby has ridden it to work everyday but maybe one! He likes the fact he's getting about 45 miles per gallon with it vs 15 with the truck or 25 with the Mustang car.0 -
Congratulations on baby Aubree, Tink! It is just so amazing that a beautiful baby can come through all that chemo and be perfect in every way. Enjoy your kids - they make all the rest of this cr** worthwhile!!!
Twink - you are too funny. But I know what you mean about not being so modest with the new appendages. Photos of mine have been sent all over the country to other women contemplating the same surgery and it doesn't bother me at all. What is the url of your blog? I would love to read it! And so happy to hear that so far, so good with the new chemo drugs.
I was told that I would have an MRI every year since I had bilateral mastectomies. Did anyone else have bilaterals here? Are you going to have an MRI each year? Other than that it is the annual pap, annual bone density and every three months with the onc for the first two years.0
Categories
Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.