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Anyone starting Chemo in Feb?
Comments
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Thank you Jan... I appreciate the time you took to explain the expression.
SammieKay, hope you won't go through the same pain this time around. At least, you could do some sailing which must be the most soothing feeling (if you do not fall down...).
Twink, I litterally giggled my way to the operating room (from checking time at 11 to 4pm prep time) reading a book my neighbor had given me for the occasion: Dave Barry's Money Secrets... I do not know whether it helped, but I came out really fresh and recovered in less than 24 hours... (simple bilat mast, no reconstruction, so only under 2 hours surgery). I also took a bunch of arnica pellets right after surgery (ask an homeopathic doctor for that)... will be thinking of you... try to sleep well to get there rested...
Happy Birthday Leah...!!! For an upbeat year with only improving news... Big hugs...
Great pics, Karen!!!
Had my Avastin-only cocktail this morning... they always present the pouch to you so you check your name, the name of the product (as if most of us are in the frame of mind it takes to spot any problem with the bag...). And I try to focus and pay attention, and I read 25mg... to which I said "wait a minute, I am supposed to get 15mg/kg, more than previous times which were are 10mg/kg, not 25). So the nurse takes the thing back, and they realized it was not following the study protocole... they had mixed the same quantities as the 4 prev. times... I thought I was being over dosed, hence my reaction, but that made them realize I was being underdosed for today (the 25mg being per ml, not per kg...). If we have to do the quality control... in a study, on top of it... very bothering... at least, I got the right dose... Next time I'll make sure they remember to check...
My wbc were pretty low, this time, and the nurse gave me masks to wear one to the concert on Thursday night (Beethoven's Missa Solemnis), in case there would be coughing people not far... But hemoglobin was back up at 12.5, which is why fatigue never took a real hold on me...
I finished my big translation project at 5:30pm last Sunday... so I have a break to rest and enjoy the yard (I was back into the habit of going to bed around midnight... not good). It is glorious in Denver right now, just the fragrance of roses, iris and peonies, and most of all mock-orange you can smell a block away (not mine, they are still too small, but trying their best, though).
Well, dear ladies, have a nice day... Thinking of you all, with special big hugs to the one with important procedures coming up...
CatherineH0 -
Hi all,
Back from chemo. So far, so good. The nausea didn't hit until 7pm last time. My wbc was 9.9 today, up from 2.2 last Fri. This time I am returning to the onc. office tomorrow and the next day for neupagen shots. Just so this chemo doesn't send my wbc tumbling.
Catherine, hope you are feeling better after your chemo. Isn't it a shame that we have to do qa for the docs? Makes one want to check everything they give us.
Well, I am really tired and sleepy. Think I will take a short nap. Hugs to all, Sammie Kay0 -
Good evening all!
Glad things went well for Catherine and SammieKay.
Catherine -- glad you had your eagle eyes on. And, congrats on finishing your translation. Do you have more time for relaxation and cooking? I made gazpacho today - yum, yum. Now that I'm done with chemo and summer is here, I'm all about eating lots of fruits and veggies.
SammieKay -- I hope that they've given you better meds this time to control to the nausea. I'm also glad that you had a nice sailing trip. How about a Feb Chemo Cruise reunion on your boat!
Jan -- My med onc told me that he wanted me to have alternating mammorgrams and MRIs as check-ups every six months. I guess it's catching on!
Marsha -- You're probably feeling how I've been feeling these past few days -- woohoo, no more chemo! It's such a pyschological relief to know that I don't have to sit in that chair, that it's given me a boost of energy. I have to be careful not to overdo it!
Carynn -- My med onc asked if I had been genetically tested b/c of my triple neg status. I had done it because of family background (mom also diagnosed pre-meno), but I turn out to be clean -- no BRCA1 or BRCA2 mutation. It is worth testing because of the ovarian cancer link.
Karen -- You look so happy at your benefit. I'm sure the exhaustion was worth it!
This morning I had my CT scan in preparation for my radiation. I'm now the proud owner of 4 tattoos! They look a bit scabby right now -- how long till they look like a real tatoo? The CT scan was a bit of a trial as you have to lay still on your back, with your arms holding a bar over your head. I'm glad that I took some ativan to relax me. I think that I'll do the same for the radiation simulation, which is scheduled for June 19th. I assume that I start treatments the next day.
Hugs go out to Twink on her surgery tomorrow, Also well wishes for Pat on taxol #8!
-- Hillary0 -
Hi Girls (and Scott if youre out there)!
What a difference a day makes! I met with my Surgeon today and I feel soooo much better. We are staying with the original game plan. While she respected the opinion of my Rad Onc, she didnt agree with everything that was said. She didnt think doing neo adjuvant was bad, and she was absolutely thrilled that we cannot find the tumor.
She disagreed that additional tissue would have to be taken from the breast to get clean margins. In fact, in her practice, if she feels that she cant get clean margins by taking 20 % or so, then the person is not likely a good candidate for lumpectomy. So bottom line, we are proceeding as planned. Add in that the Rad Onc is a fan of frequent scans, and Im feeling pretty darn good about this again!
Last week at the Oncs she discovered that the pathology report with my hormone receptor status wasnt in my file. This led to a big discussion between us about where the triple neg status info came from and was it accurate. Well, the facility where I had my biopsy done is right across the street from the BS, so I stopped in and got a copy. Spent about ½ hour thinking I wasnt triple neg, only to re-read it when I got home, and yup, triple neg it is. Oh well.
Karen you look absolutely radiant at your benefit, and its so nice to see your smiling face!
Catherine hope you are feeling well after making sure your docs did their job right.
Give em hell girl, and wishing you minimal to no side effects this time.
Hillary me too, MRIs and mammos. It was what I wanted, so I was happy.
Twink hang in there buddy. Were all thinking of you and sending lots of love, prayers and hugs.
Next up for me is an MRI, waiting to get Insurance authorization, but they told me to plan on it being this week. Were assuming one week to get the results and planning on surgery the following week. The surgeon will be calling with those dates tomorrow or the next day.
Best wishes to anyone at the bar or have tx today. Off to watch the debates. Take care and good night all.
Carynn0 -
Carynn, happy to read you are getting information you feel more comfortable with... it is really something the way you responded to chemo... amazingly good news.
The avastin is not chemo, it is an anti-body (no side effects apart from a runny/bleeding nose and keeping a close check of blood pressure), so I won't have any blood counts issues, fatigue or whatever from now on...
I just swallowed my first tamoxifen... this is what will exacerbate hot flashes and night sweats which were at a minimum so far... oh, well...
I thought this would be a big budget item, but only 17$/month (savings from insurance: $54+)... on for at least one year, maybe 2, then Arimidex or Aromasin whatever they'll see fit then (there might be something even better available by then, who knows...). I am thrilled to not have to wait for SE's to develop this coming week... like quite a few of us out there... I intend to revisit the photobucket issue and will post a few pictures about the nice things and creatures in my life... and I'll write up a few recipies for those who like to cook...
Leah, did you have a nice day for your birthday? How are you feeling? Thinking of you...
Twink, a last kiss on each of your lovely cheeks to wish you a good night sleep and the best for tomorrow...
Have all a nice evening,
Big hugs,
Catherine0 -
Catherine...looks like we are together in the tamoxifin event. I just took my first one tonight too! 20mg's
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Leah, hope you had a wonderful and very happy birthday!
Twink, I too want to wish you much luck tomorrow and a very smooth surgery with a fast painless recovery!
Carynn, so happy to hear that you can still stay with your original plan for lumpectomy and it sounds like your surgeon is on top of it! So important!
Catherine, good catch on the meds! They never offered to let me check my infusions, but I always did anyway as I was so afraid of being overdosed and having a bad reaction. Even though we shouldn't have to, it is a great idea to always check for ourselves. The docs and nurses are still human and can make mistakes, scary as that idea is.
Karen, your photos are wonderful and what a great idea for the benefit. Looks like it was a smashing success!0 -
The pain is much better than it was on Sunday, thank goodness!! Finally got to talk with the nurse and she thinks the once a month Boniva pill is the actual culprit based on the fact that I had been on the Femara daily for three weeks with absolutely no side effects and only had them 24 hours after taking the Boniva. I had not been aware before that that was a possible side effect.
But as I am still taking the Femara and the pain is so much less I think she is right. She believes that next month the reaction will not be as severe to the Boniva as my body will be more used to it. I told her that's probably right as I don't know that I will take the Boniva again and chance experiencing that excruciating and debilitating pain! The knees are still very tender, but at least I can walk up and down the stairs without leaning on the railing, and I am down to only one or two Ibuprofens every six hours instead of three or four. What a journey we are on! And I thought I was basically home free after finishing chemo!!
Hope everyone else will experience no SEs from the hormone therapies, but it will be interesting to see what all the different oncs prescribe and why. Hope everyone will stay on this thread so we can keep up with each other on AIs or Tamoxifen and the rads for those who go to those next!0 -
interesting...I can feel I had the Tamoxifin. I feel like I've had a couple of drinks and have a bit of a buzz this morning. I got up to pee 3 times last night rather than the usual one. I wonder if I notice it more than you gals would because I had my one dose of chemo in Feburary and am 4 weeks out from finishing rads. I was feeling like my normal self before starting tamoxifin.
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Wildabouthorses, I had been feeling like my old self as well before starting the Femara (I had about a month and a half break before starting while we figured out if I was going to do more chemo or not) and I did not feel any side effects until I took the Boniva. Interesting side effect, feeling buzzed?!! Though now that you mention it, I do get up a lot in the night to pee now. Had not really associated that with the Femara. And it's not much pee, more like I feel like I have to go.
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Oh and another interesting thing, I had a very mild hot flash rather than the "sweating a river" hot flash during the night that usually finds me throwing off covers and nightgown. Now that's one side effect I could live with! I wonder whats with the peeing thing with these hormone therapies since you are dong it too?
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Thank you for the words of encouragement and kind wishes. Leah...I'm going to that happy place now...Catherine, maybe I should read my Nora Ephron book of essays...she always cracks me up.
I check in at 11:30. Met with the PS yesterday and did the preadmission stuff at the hospital. Had that painful injection of radioactive material too in prep for the SNB today. Overall, I'm better today than I have been in days. I'll be done before dinner time and in the recovery room. Should be home tomorrow night if all goes well. The PS told me my implants will be as big as the remaining breast skin can accommodate...hmmmm...I may end up with As or DDs...I'll be anxious to find out (hehe).
Looking forward to hearing how Mel made out yesterday...I've been thinking about you girl and wishing you a speedy recovery.0 -
GM gals, not in a very good frame of mind. Saw the onc nurse yesterday for routine end of chemo visit and she very casually dropped the news that the onc had looked at my chart that morning and thinks we need to add Rads. WTF? My treatment plan has NEVER included rads. My surgeon said I didn't need it, the original onc visit mapped out my tx as chemo X8 and tamoxifen for 5 years. That is it! Had mast with nice 1 cm clear margin. The original tx plan was no rads. Here I have a date on my calender that says I AM DONE ON MAY 23 and I have no new testing or scans or anything done. How can they do this to me? I went in there handing out fake million dollar bills saying I feel like a million and want you to also and them BAM I don't get it.NO where in my chart is rads mentioned/. I was TOLD no rads. Somebody please explain to me............. I absolutely fell apart. Haven't actually seen my onc in 6 weeks. I cried all day, hyperventilated alnd the whole nine yards. SHOCKED is too mild a word. I have a effing party planned for Gods sake. I don't know if I can mentally gear myself back up.
Marsha
PS I read everyones post and I know there is alot of prayers needed for folks.....I am doing that for everyone, just don't feel much like a cheerleader today. Sorry.0 -
Oh, Marsha, how awful! I would have fell apart too, after having gotten metnally geared to be done with treatment.
Can't you talk to the onc directly? I can't remember if you had positive nodes or not? Why would they want to add rads?
Lots of hugs being sent your way ...
-- Hillary0 -
Twink we will all be waiting to hear news of you after surgery and how big your new ta tas are! I told my PS I trusted him to give me the right size and my DH says they are perfect (good answer!) If you can, have your DH post tonight to let us know how you are. Good luck, my dear! (By the way, I love Erma Bombeck and could reread her classic "The grass is always greener over the septic tank" a dozen times over.)
Marsha, WTF indeed! Did you have positive nodes? My radiation onc told me that he only recommends radiation if there are four or more nodes positive, there are no clear margins, or if the tumor is close to the chest wall. Otherwise he says radiation is more apt to be more harm than good. What did your onc say made her change her mind?!!0 -
Twink; I know you are going to do wonderfully through your surgery. I am hoping for negative nodes for you! Last night, we took my friend that is about to get her expanders exchanged for her permies to dinner. She has always been very modest about her breasts and was I shocked when she wanted me to sit in her car so she could pull up her shirt and show me! Then she told me to feel them! I gingerly touched...she said NO...I want you to really feel them...took my hand and pushed it hard on the Rocks. Indeed, they were ROCKS! Moral of this story...I am happy that you are getting your permament implants and do not have to go through the expander process. We have all been through enough...
Marsha; I feel so bad for you. I know you will question this more before stepping up to the plate...just to get hit again. What a blow. Hang in there...we will all be thinking of you.
I told a little fib yesterday. I told the lab that I would be out of town next week, so I wouldn't be in to get my bloodwork. Now...I have to make sure that I AM out of town! I know it's silly, but I am so tired of being "stuck" every single week for the last 4 months, and I just wanted a break. Next week is always my highest "numbers" week and I feel like a 3 year old, stomping my foot and saying "I don't wanna!". Yesterday, they actually drew the blood from my wrist...ughhh. I also went to the lymphemdema clinic to start the process for getting my sleeve/glove for flying. I will go 2 more times and learn the massage techniques to do daily drainage massage. I don't have lymphemdema, but I am hoping to protect myself from developing it...especially after seeing the folks in there that were wrapped shoulder to fingertips!
The bar list is growing shorter...YAY! Funny thing last night...I have been feeling really old lately, with the baldness and not so great skin tone. I ordered a drink and the girl wants to see my id. I thought she was joking. Nope. I protested...I am 44! No good. DH was po'd as he had to tromp back to the car and get my purse. If we hadn't been waiting on our friends, we would have gotten up and left. Mind you, I am sometimes subjected to being id'd, but given my current appearance...I was pretty surprised...and after calming dh down, I was even amused and a bit flattered. Imagine that.
Sammie; I am thinking of you. I hope you don't feel too alone since you are just really getting started on what most of us have finished. We will still be here for you. Please continue to share what you are going through...we all care about you!0 -
Marsha...what a shock after getting through chemo thinking things were getting somewhat back to normal. I had no bad nodes and still have to have rads but I did have two lumpectomies and I think all lumpectomies have to have rads? I know some ladies had rads after masectomies to get the little buggers that might still be in the skin or scar.
Hang in there girl, rads was a breeze for me compared to chemo!0 -
Marsha, so sorry to hear the news. Really sounds like it should have come from your onc and not the nurse. Can you at least talk to him/her by phone or make a brief apt to discuss. You have a good reason to be mad. Let us know.
Twink- praying for you. Hoping for a good boob turnout!
Catherine-you started tamoxifen! you will have to let us know how that goes. That must have been unnerving to find the error in your dosage. I ask to see every pill, vial, and bag before it goes in for that very reason. You did a great job catching it.
Melanie-wow getting carded. You must have been looking pretty good. Don't blame you one bit for "arranging" a break in getting stuck.
Still having the nerve pain in my hands and feet. Increased my neurontin yesterday to 900 mg a day. Then I slept all day. I hope today I can stay awake for a little bit. The pain seems slightly better today so I guess it is worth it.
Most of the hair that I did have fell out after my last abraxane. Oh well.
Take care
Karen0 -
Marsha, Marsha... so sorry to read about this very disheartening news which, indeed, should have been explained and discussed with you by the onc, not a nurse... I have been seeing the onc every 2 weeks, before each tx, even if sometimes that was just a little chit-chat... Boy, I would be bumped, too, if yesterday he had told me a change of mind... I had 2 positive sentinelle nodes (no axillary, though, the 5 taken out were in the clear), and like you the tumor was small (1.7cm) and toward the outside of my right breast, not deep in the tissue)... and the whole point of mastectomy, among other things is to be spared the radiotherapy... Did you have an opportunity to talk to the onc in person, so, as a minimum, you can understand the rationale for it? Please let us know, OK? I wish I could be with you to help you overcome this big disappointment just when you thought that was it for now...
Thinking of you, sweetie, and hoping you'll have more info soon...
Catherine0 -
Marsha finding out about having to have more treatment is definitely a real blow. You really need to have a candid discussion with your oncologist about why the treatment plan changed and what benefit they are expecting that they didnt before. Hang in there, as I know this is difficult to deal with. Once you have some answers it will help you to put things into perspective.
Catherine Youll have to keep me posted on the tamoxifen, as I will start it after radiation. I, personally, cant imagine that the hot flashes and night sweats can be any worse than what Ive been experiencing with this chemo, but if so I want to be prepared!
Karen your pictures are great and it sounds like a good time was had by all!
Carynn I am glad you got everything resolved regarding the next steps in your treatment.
Jan I will definitely ask my onc about the recommended frequency of MRIs and what he recommends for me. It just seems so important to know the best techniques for monitoring going forward.
Hillary I am up for my radiation CT and treatment planning on 6/25 I guess Ill get my tattoos then. I am just looking forward to the break in between chemo and radiation. Is the genetic testing more relevant if you are triple neg? I ask because I am ER+/PR+ and I dont recall discussing this with my oncologist.
Tomorrow I am at the bar for my LAST CHEMO!!!! I am excited that it is the last one, but I am not looking forward to the side effects. On Friday, I either had a stomach virus or ate something that didnt agree with me, so for the first time since Ive been on chemo I was vomiting. Fortunately, I was able to get over it within one day, so by Saturday I was feeling better. Without Neulasta after treatment #3, my WBCs dropped significantly, which may be why I was susceptible to the stomach bug. So now I am debating whether I should forego Neulasta to minimize the taxol aches at the risk of infection. I am leaning towards getting Neulasta, as being ill was far worse.
After treatment tomorrow I am also scheduled to get fitted for a compression sleeve, as I am traveling by airplane to Atlanta for a work-related conference on June 17th. My surgeon didnt seem to think it was absolutely necessary, but I rather play it conservative. I am looking forward to getting away, and I am really glad that treatment will be over and I should be feeling pretty good.
Well, today is my 9-year wedding anniversary, so DH is taking me out to dinner while my sister watches the kids. I decided to just go tonight (as opposed to this weekend) so that I can really enjoy the food while I feel pretty good. So, I will check in within a few days of treatment.
Take care everyone!
Steph0 -
I was able to get a compression sleeve through a local pharmacy without a prescription. They measured me then orderd a Jobst one. My rads doc told me I could get one this way rather than through the therapist (prescript needed way) that gave me the lymphadema info and she had measured me to get the before size during the info session. I don't know if it was cheaper or the same price doing the non prescript way.
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Marsha - I was going to send you a PM last week after my rads consult. I really was concerned that your onc felt rads was not indicated with the 5 cm tumor. I'm going to try to find the website he brought up while I was in the office - it does a great job of breaking down the various types of BC and the criteria indicating radiation. I wrote it down somewhere - now where did I put it? Cheer up Girlfriend - we wanna do everything we can to make sure we're not gonna go thru this again. {{{{{Marsha}}}}}
ttyl.
Phyl0 -
Twink - we'll be thinking about you tomorrow. btw - I saw on the January list that Mel's husband checked in and she's doing fine.
Vegas - I was so glad to see you have no issues with Femara. I'll be starting June 18th.
Melanie & Carynn - the race is about an hour and a half from me this week. My son and DIL and 2 of their friends are going. I get to keep my 2 yo DGD.
Karen - tx for posting the pics. What a wonderful event.
Jan - how are things going with the trike?
Gotta run! Hugs to all.
Phyl0 -
Phyl --
I think that you mean the National Comprehensive Cancer Network guidelines (see www.nccn.org).
Paraphrasing them about RT after mastectomy:
With 4 or more nodes, definitely do RT
With 1 to 4 nodes, consider RT
For tumor > 5 cm, do RT
For tumor close to chest wall, do RT
For tumor < 5 cm and positive margins, consider RT
So Marsha, you fall in the gray zone. We're all here for you ...
-- Hillary0 -
Jan, Steph... I did not notice anything new after my first Tamoxifen... no aches and pains or no more sweaty nights than before, as for daytime hot flashes, had a couple since this morning, but that's all. I noticed they usually start after a meal, but nothing to write home about... no need to change t-shirt... as far as getting up at night, I have been up 2-3 times for the last 4 years, I'd say (I do drink a lot of water all day long until 10pm...). When I was taking the Ativan, I slept through without getting up (maybe once, that's all).
The onc mentioned the risks (clots, uterus cancer, all those goodies) but insisted how rare those were, after at least 5 years non stop and for women severely overweight with diabetes and not moving around. So I asked about taking a baby aspirin everyday, he said "no, here is what you can do (I've been doing this for years): take one 325mg aspirin, the coated enteric type, generic is fine, on M W F and Sundays". He gave me a slip showing that this regimen lowers clot risk by 50%, heart attack by 30%, colon cancer by 40, breast cancer by 28, acute leukemia by 55... So, it was Wed. and we both took an aspirin this morning with bkfst, and I take the Tamoxifen after dinner... maybe the aspirin will help with the aches and pains... They did not want us to take aspirin during chemo, but now seems to be OK... Eh, I'll try anything to stay healthy. Just thought I'd pass it on (but you may be already doing the same...)
On Memorial Day I mentioned the US cemetery in Normandy, above Omaha-beach... and how you cannot not cry when standing there... here is a clip from today's evening news in France recounting the ceremony that took place there today, D-day landing 63rd anniversary... It was raining, too bad, but so "normal" for Normandy, even in June... and even then on that 6th of June 1944... I put the link that may give you a better idea of what I was talking about... try to copy and paste the link in IE rather than accessing from here (does not work otherwise)
http://tf1.lci.fr/infos/media/jt/0,,3465498,00-anniversaire-debarquement-temoignage-veteran-.html
A nice evening to all and extra big hugs to those in pain and down today,
Catherine0 -
Hugs out to StephJ (last taxol!), Piper (last!), and Terry (2nd to last).
Twink -- Hope things went well today and you can post tomorrow ...
-- Hillary0 -
Catherine, I sent you a pm.
Scott0 -
My mother is stable and currently relaxing at the hospital.
-Her Daughter0 -
Thanks Twink's daughter! Please give her a big hug from all of us and do keep us posted.
0 -
Thanks so much for letting us know that your mom is doing well. We are all thinking of her!
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