Weekly Taxol group
Comments
-
Thank you HappyAnyway. I have an appt. on Wednesday to discuss further, but by that point I will only have one Taxol left. I am curious if it is worth adding at the end.
I'm more upset that he is not up to date on research. I guess now I will just have to hope that what I have done was enough for a pCR. If not, I'm sure there will be further discussions.
0 -
I feel for you. These are potentially the most important decisions in our lives.
0 -
Happy anyway, I have the same color difference and hate it. I have some fuzz/slightly more hair growing back in so self tanner would be a mess I'm afraid but I was startled by the difference too. I am already quite fair so I was surprised to see such a contrast.
Margun, ipenelope's advice is great. If the blister pops or the redness spreads, or you notice fever, let the doctor/nurse know. Try not to put pressure on it with tight shoes, etc.
I have my last Taxol Friday!! Can't wait to be finished. Having much fatigue and on and off tingling in fingers and toes and yucky taste that seems worse, but I'm eyeing the finish line. Next up is Radiation but I don't see my MO till 7/23 so I guess I will get a 2.5 week break to rest/recover.
Wishing minimal side effects and positive vibes to all!
0 -
Congrats Loiswb! One more whoo hoo!
0 -
margun- is the band aid plastic or fabric? Fabric breaths much better and good keeping it uncovered while at home.
Happy good luck with the self tanner, my hair is coming in white to very very light blonde so I'm getting a natural tan on my head... first for everything right lol.
Ucf- are you scans not showing positive changes??
I hope everyone is having a good cancer kicking ass week!!🥊🥊
~Katie💗
0 -
notdefined - If my tumor had been larger or lymph nodes had been involved then I would have been on taxotere/carboplatin/Herceptin/perjeta instead of Taxol and Herceptin. While I understand the perjeta would have been to shrink the tumor, I'm not sure why some of the other drugs would have been added or changed. While I trust my MO, I still wonder if I'm doing everything I should. I was willing to have the mastectomy instead of the lumpectomy but my BS said there was no difference in outcome. But I'm worried about recurrence. Really worried. I would talk to your MO about the Carboplatin
Also I wore a hat to work yesterday and I think the wig will only be occasionally. I felt much better (my head) in the hat.
Yay loiswb!
I hope everyone is doing well today. #5 today
0 -
I saw BS yesterday and he did an ultrasound. My mass hasn't shrunk much from my last ultrasound 4/26 but he said it's less homogeneous. He thinks it's being eaten away by the chemo. He couldn't find the affected lympnoid which had me crying tears of joy. He said my armpit looked great. I told him no one has ever said that to me before 🤗
There is now space between my nipple and tissue so he's going to try for a nipple sparring mastectomy. No guarantees though and he said not to get my hopes up.
We're looking at 8/8 as my surgery date. I have to meet PS again on 7/24. Nurse navigator said if my lymphnoids come back clear I may not need radiation. That would be incredible. She also told me I'm getting closer to reclaiming my life. All in all it was a good visit. I'm trying not to get my hopes up though. We did discuss Kadcyla and how it reduces the chances of reoccurrence if I do have residual disease.
So many unknowns till surgery.
I hope everyone is doing well and not experiencing bad side effects.
🤗🤗🤗
Dawn
0 -
Notdefined, thinking of you today and your visit with your MO.
loiswb and ipenelope, I may try my experiment this weekend. I don't have treatment next week, so if it fails I will have some time to figure out what to do. Lol
DogMomRunner, good luck with number 5!
0 -
Fabulous news, DawnS1962! Congrats!
0 -
Dawn, you made me chuckle with your "armpit looks great" comment. I'm happy that you are seeing some changes! Are you having reconstruction at the same time as your mastectomy?
DogMomRunner-I intend to discuss with my ON, but unfortunately our appointment is during my infusion. There will be limited privacy, and I'm not sure being out in the open will allow for a heart-to-heart discussion. I think if the chance of recurrence wasn't hanging over our heads, this cancer nightmare could be a little more bearable.
HappyAnyway-thanks, and hope your hair experiment goes as expected! Are you doing dense dose Taxol?
well here's to number 11 today! 8 more days left, and then I will be counting down to surgery.
0 -
Hey notdefined. Since my MO is adding carbo, my schedule has changed a bit. I have three weekly Taxol, a week off, then Taxol and carbo. What kind of surgery are you having?
0 -
notdefined, I'm having an implant put in when the mass is removed. The PS wanted to do nipple reconstruction, which I wasn't interested in but that's now up in the air. I guess I'll find out more when I meet with him again. I just don't want to keep going back for reconstruction. I'm hoping the 8th is my one and only surgery. Not sure if that's realistic though. I know radiation can damage the implant. I will have a lot to consider and I guess it's good to finally be able to make some decisions in this process but I'm just not sure what I want besides it being over as soon as humanly possible. So much depends on what they find at surgery. If chemo brain wasn't mind numbing enough......
Congrats on getting to #11. I'll be joining you soon then just 1 more Taxol!!!
0 -
HappyAnyway, I use a self tanner made by Beauty by Earth. It's all natural and organic. I originally ordered to use at my daughter's graduation but I still use it weekly. It's very natural looking. No orange tone at all. My oldest daughter just started using it also.
0 -
Well crap. My WBC is down too low for the taxol. This adds a week to my schedule. I will get the Herceptin today but I was feeling good. Now I have to really worry about infections and my job
0 -
dogmomrunner- Your Mo did nor prescribe inje to increase WBC? I had to have them during Ac.i hope all be fine soon
The job stays a dilemma for me after the diagnosis. I worked all my life without doing much for myself. Still I thing even now I need my job to keep my thoughts far from cancer. But I think I have to find, if possible, a compromise to keep myself busy and have some incwithout being overwhelmed and have a good amount of time to do something else. I do not know your ladies how you are planning to go forward with your jobs after the main cancer treatment is over.
0 -
Hi ladies
My mom is on taxol/carbo now. She did not get an infusion last week because of low platelets. The week before she only got Taxol because carbo was significantly lowering both hemoglobin and platelets. The tumor seems lighter in color now, but larger in size. Is that normal? During the previous two weeks she has been suffering pain in the tumor site. Anybody went through a similar situation?
0 -
HappyAnyway- I am having a mastectomy on my right with DIEP reconstruction. I am going up a size, since I've never been happy with my size in the first place. It also is an opportunity to get rid of the excess skin from my twin pregnancy. I only met with my BS once and my next appointment is at the end of this month. Surgery is scheduled for August 19th. I am calling it my mommy makeover
, but really I think the surgery will give me peace of mind. DogMomRunner-sorry about the WBC being low. It is so frustrating when our bodies do not cooperate. Are you able to work from home?
Dawn-I know that so much is dependent on the surgery outcome. I think I'm going to need tissue expanders on the left, but I'm not certain how everything will play out.
Margun-I had some time off during chemo, and found that time off from work allows my mind to go to dark places. I intend to go back to work when my energy has restored. That will be a while for me since my surgery will have me back home. Thankfully I will be able to work from home when I am done taking pain meds.
I really, really want my eyebrows and eyelashes back. I'm wondering how long it will take for them to start coming back.
0 -
I am hoping I have enough energy for tomorrow. 4th of July is one of my favorite holidays! Hope you are all able to enjoy with minimal SE's!
0 -
notdefined- we have the same surgery date. I hope it goes well for both of us as well as for all these brave ladies here. If you are going one size up for one breast that’s mean you have operate the other one as well to have them both the same size
0 -
Hi Margun-yes, you are correct. I think they are going to place a tissue expander on that side when I have the mastectomy.
0 -
notdefined- yesterday was 2 mths pfc and my eye lashes really started coming back about 4-5 weeks pfc and my eyebrows arw still slowly coming in. I hope your energy level is good for tomorrow so your 4th is great!!!
I worked through all of chemo, AC & T. Partially due to financial reasons and I wanted to stay somewhat active and keep my brain engaged. Im not gonna lie some days wre harder then others, like hitting a wall and having to take a15 minute nap at 3pm, which became more frequent toward the end of Taxol. I do a good amount of walking for my job so that some movement helped. The only time I had off was surgery recovery and the day of chemo as the IV benadryl made me really sleepy and I couldn't work given my job and safety.
I hope everyone is having a great week! Keep being strong women kicking cancer's ass!!!🥊🥊
~Katie💗
0 -
Thanks for the info ipenelope! I found some good eyebrow fake tattoos that work really well. I am okay keeping that up, but putting fake eyelashes on is a pain! It is nice to know if I will have some lashes by the time my surgery takes place. BTW, I like your updated picture!
0 -
I had #10 Taxol today. Hoping for minimal SEs. I have to say, I had minimal SEs last week, just afternoon fatigue. Meeting with the surgeon next week, hoping for a surgery date. Doing pretty good drawing on eyebrows, but I don’t like the way I look without eye lashes and wearing fake ones are too fussy for everyday. Hope everyone is doing well
0 -
hi Margun - I think that my MO will prescribe something if my count doesn't come up for next week's treatment. Today was a day early due to the holiday and I guess they hope that I won't need something to boost the white cells.
I am a geriatric social worker at a skilled nursing facility. I really like the job and would hate to have to take FMLA due to feeling bad. So far I have been able to work a 40 hour week. I have paid time off that I can use to supplement the hours for my treatment day. But I have been able to work longer days when I am there (other than Thursday's) and then also go in on Saturdays
0 -
notdefined- thanks about the picture! That was me yesterday.
When my eye lashes were all gone I used black eyeliner and lined my upper lid where mutt lashes should have been and that way it looked like i had something and I really have never had luck with fake lashes!! I lined my lower lid with black also to kinda give the same. It obviously wasn't the same but at least my eyes didn't look weird and washed out.
Dogmomrunner- i used to work as a unit manager in a long term care center so I know what your going through. I work as a home health nurse and was able to work the whole time and didn't once have to wear a mask. I was lucky that my WBC levels were good through AC and decreased through Taxol but with making sure to wash my hands alot and even would clean my nose area with hand sanitizer and made it through the winter without getting sick. Please don't over do it!!
I hope everyone is having a great week!!
~Katie💗
0 -
did you advised your employer that you have cancer? How they responded to that
0 -
margun- yes my employer knew about me having cancer. They were wonderful and very supportive! They allowed me all the time off I needed for apts and what not, they even allowed me to work from home when needed. With the falling asleep at my desk they expressed concern about my health more than concern about me doing my job. They even sent me home a couple times because they didn't like how i looked, lol.
Sadly given its a cancer dx there is only so much they can do given i was open and honest with them on all stages and gave as much notice as possible with apts and surgeries. I hope this helps.
Happy Independence Day to all the stateside ladies!! Keep up the cancer's ass kicking 🥊🥊🥊
~Katie💗
0 -
one of the ladies here was saying that she can relate anyone around her because non of them have cancer and can understand our straggle and fears. I understand that. I feel that I am not from the same planet while life’s goes around me as usual as it was but I am not. The thing is I cannot even relate to a person who has a less aggressive tumour and only thing she has to do it is the surgery and 12-15 rounds of radio. I think that part will be the most bearable and shortest part of this journey involving, in my case, 6 months of chemo, surgery, radio , 1 year if herceptin and 5/10 year hormone therapy, which, as much as I learned also gives fatigue and joint pain. ....still i will be thankful if it does not come back. While I am trying to stay positive ( no use in crying anyway) sometime i become angry ...it was not enough having BC but having one with cherry on top?what do you do .or think to overcome the anger and frustration besides what i think:there’s no use
0 -
Margun, I get angry at times. It's normal. This whole thing is frustrating. I try to remember that things can always be worse though. As bad as triple positive can be, we're fortunate to have so many new treatments available. Just think 20 yrs ago this would have most likely been a death sentence. In my worse case scenario I'll have residual disease after surgery. Now with Kadcyla available my chance of an invasive reoccurrence has dropped tremendously.
On May 31st my Taxol leaked out and I only received a quarter of my dose. It was a mess and I was so frustrated. It felt like a complete waste of time. I was very angry. That same day while I was wallowing in self pity, 12 people were gunned down less than a mile from my home. It certainly put things in perspective for me. Every time I start feeling a pity party coming on I remind myself of those poor souls who went to work that day never to return to their loved ones.
I still get frustrated and sometimes it's still surreal. I wonder how I got on this ride and when can I get off. You just have to hang in there and remember it can be worse
I wish you only the best and good thoughts today.
🤗🤗
Dawn
0 -
Margun,
it's OK to be angry, sad, whatever feeling. It isn't fair for any of us. The journey is not one any of us planned on or expected. It is a roller coaster! In my case, hearing the diagnosis/biopsy results was a big shock- I had been told there was an 80% chance of it being benign. Then I was told due to low grade, ER/PR +, I would just need surgery and 15-20 Rad treatments and NO CHEMO--that was a huge relief/positive news. Then, with first surgery, they reported 2/3 + nodes---huge let down. Then heard that margins were positive and it was actually 3/3 + nodes on final result. Huger downer, and meant a much longer road, more surgery,(which thankfully had clear margins and 0/9 + additional nodes) chemo, longer radiation. I had hoped the chemo would not be so long but it was, and now I have to do 30 radiation instead.... things are up and down for all of us. Most of us can tell ourselves that "it could be worse", and I am truly grateful that my prognosis is relatively good in the long run. I also get comfort from knowing that it's not my husband or my children having to endure this. I'm generally a positive, look on the bright side, glass is half full type of person, and I still have my dark thoughts and bad days and tears sometimes. You are right that most everybody out in the normal world has no idea what you are going through. And sometimes they can say unhelpful things. I deal with people on a regular basis and many ask about my situation as I'm wearing a hat/scarf......generally they are supportive but I've had two very unhelpful comments---"I hope you don't do radiation, it's so disfiguring and ruined my sister's heart", and "my cousin had chemo and she lost her hair permanently"----great--thanks, that really DOES NOT help me---I've lost my hair and a saving grace is that it will grow back, and I have been recommended to do radiation..--as you said, it sometimes feels like I'm walking around in a different world than everyone else! That's one reason coming here is such a big help. Hang in there!
0
