Chemo starting October 2017
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Hi, Petey - Good luck with that tonsil! It sucks going into a chemo appointment with the fear they may not clear you. Hope you get the green light. Let's get this thing DONE!!
Sara Joyseeker - That yoga class sounds so good. I just don't know if I have the stamina for a class. I'm winded doing anything these days. There is a yoga class in my neighborhood that has 2 classes, therapeutic yoga and restorative yoga nidra. You may have given me the inspiration to go in and speak with them.
LisaRx - that is so great that you've lost 20 pounds during treatment. Wigs off to you :-) I'm so impressed with all of you that have been able to keep your eating healthy and consciously lose unwanted weight while on chemo. From everything I read maintaining a healthy weight is one of the most important things you can do to substantially reduce the chance of recurrence.
For those of you who still have to have surgery do you have your date set yet? If so, how far out is it from your last infusion? I'm just setting up all my new "post-chemo" appointments and wonder when the actual surgery might be.
Have a good Wednesday, ladies!
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Agatha, I think I have a surgery date based on my online chart appointment notifications. I have an appt set on April 9th for a nuclear injection. My understanding is that is what they do to check your nodes during surgery. What confuses me is the appt is at 2:45. I am getting a BMX and my understanding is that is a long surgery (6-7 hours). And I have a post op appt set for April 18th. If my surgery is indeed on the 9th, that would be 20 days past last chemo. I believe 3-6 weeks is standard time frame from chemo to surgery.
I was dx with BC one month after my daughter started kindergarten. She got her first birthday party invite from a classmate today. It's at one of those kid places with bounce houses. Thinking even though I will be mid chemo cycle and feeling fine, I shouldn't go. Rampant kid germs in those places and the flu is terrible here. My husband can take her, so she won't miss out. But chalk up to another reason cancer sucks
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Jennnifer, are you sure that the nuclear injection appt isn't for the pre-op MRI? They do a nuclear injection for that.
Agatha, I have no date set. I'm meeting with a plastic surgeon on 1/29 to get information about the different surgeries. I'm also meeting with my oncologist on 1/24, at which time I'll ask what his recommendation is: lumpectomy + radiation or mastectomy. The more I read about reconstruction, the less I want it, so I think that I've narrowed it down to those two options.
Taxol #7 is under my belt. I can now count on one hand how many treatments I have left.35 more days of chemo!
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Lisa- I already have a MRI scheduled too in March and then meet with BS one week later. It's before my last scheduled Taxol. That isgoing to be an anxiety filled week waiting for results.
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Agatha. You could definitely do restorative yoga. We only did six poses in an hour. Never got off the mat. Lots of stretching and breathing. I’m definitely going back next week. And......I signed up for my first riding lesson Friday. Eeeeek!! I’m feeling great this week so I want to take advantage of it and be active. 29 days left of chemo
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Jennifer my surgery was about 3hrs for bmx. No plastic surgeon involved though wasnt an option for me. Thankfully he did pretty good job considering im staying flat. I may go to ps in distance future just to even out out my chest.
My nuclear was hour before. Some are day before.
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Sara, I'm so glad that you're feeling so much better lately. Being able to live our lives is so good for our outlook
Jennifer, I understand about the anxiety. I don't think I'll be able to really relax until after the MRI and node biopsy. Re the bday party, I've been avoiding big crowds, but when I can't, I've been wearing my mask ever since I picked up this virus that I'm finally getting over. There are also reports that the hospitals are seeing record numbers of flu already. So I think it's wise to be cautious since our immune systems are being taxed. Or should I say Taxoled
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People already said a lot of what I wanted to say. LOL
Restorative yoga doesn't requite much stamina. In fact, every time I've been (at night), someone starts snoring! LOL
Jennifer - Do you have a nurse navigator? Mine is super awesome and she would be the person I would call to say...I'm confused with all these appointments and dates, etc.. Maybe you can find out if you have someone like her and call them!
Sara - I'm so glad you are feeling better!
I can't imagine the anxiety you gals who haven't had surgery have. I know you all will anxiously be awaiting results.
I got to go ahead with Taxol today. She wasn't worried since I didn't have a fever and my numbers were fine. If it's still there in three weeks, she'll recommend a consult with an ENT. She thinks it's probably just a virus hanging around taking its sweet time to go away.
No one was at all surprised to hear that I was body achey last weekend. Sure would have been nice if they had warned me!!! Oh well. Now I know and they think it might not be as bad this time around. That would be swell.
A gal who I've seen several times had her last chemo today. I was a little jealous of that. However, she still has surgery to go. Double BMX and had tumors in both breasts. I hope her journey goes ok. It's weird to know I probably won't see her again. I would assume people hang around these message boards and go to survivor groups because they want that shared experience. I might have to look into that at some point. I get so sick of talking about cancer now, it's kind of funny to think I may want that later!
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To all the ladies facing surgery soon....you’ve totally got this. My mastectomy was way LESS painful than having my ankle fixed two weeks before. And maybe even less painful than my port? (Or maybe the mast. drugs were better???🤪💕). Stock up on some easy meals. Buy some extra pillows. Ask for some Netflix suggestions.Get ready to be gentle on yourself for the recovery. I’ll be praying for all of you in the decisions you have to make and the procedures you have to endure.
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Joyseeker, I really want to try yoga. You had your mastectomy in September like I did. Can you stretch well? I am concerned about that.
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KimCee I had my mast. September 20th. Yes!! Start with restorative. It’s slow and gentle. I also attend a kind of beginners class on Thursdays and I haven’t had any limitations. I just say “Sara. Do what you can. And that is enough. Being here alone is a path of courage. So just meet your body where it’s at”. Looking forward to hearing about your first class!!
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Awesome Sara...I am definitely going to check around for a class. I won't push it. I know Yoga is good for the body and the mind. Will definitely keep you informed 😁
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Petey- great idea with the nurse navigator. I haven't contacted her. I met her at the you got cancer meeting. But she talked so loud, was so in my face, not very empathic when tears filled my eyes and just handed me a stack of papers with info. Maybe I will get a better response on the phone.
Had a meeting at daughters school this morning and put on a little makeup and wig. Noticed when I put on mascara, don't have many bottom lashes anymore and eyebrows are thinner with a chunk missing on the inner right. Pic is late October and now. Can't wait to start growing hair. I keep looking at those post chemo hair growth pics.
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Oh Jennifer that stinks that the Nurse Navigator isn't very personable! My is very kind. I hope you get a better response on the phone!
Look at you with makeup!!! I can't remember the last time I put make up on. I was actually supposed to go to a meeting today and planned on doing that, but we were supposed to get a lot of snow. The storm shifted south so it missed us, but the meeting and campus was already closed.
Tomorrow I am going to go see my friends from my former school. My retiree friend and I are going to take them lunch. I haven't really gone out or seen people other than family for about a month, so I'm ready to feel like I'm in the land of the living again!
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Jennifer, I can't wait to grow hair, either. It's become my latest obsession: 34 more days of chemo; 94 more days til hair!
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Ladies- Has anyone here chosen not to have a port? When I started treatment, my MO said that a port isn't necessary because I had good veins. I've had 4 DD AC treatments and just finished my 3rd of 12 Taxol today. I will be receiving Herceptin and Perjeta every three weeks until January 2019 and don't know if I can handle the anticipation of getting stuck in a new spot each week. I've also noticed bruising and generalized tenderness is still visible from my IV 2 weeks ago when I had my first Taxol/Herceptin/Perjeta infusion.
Do you have any recommendations/feelings on whether the port was worth getting?
Thanks so much!
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Jennifer - You look so pretty! I've been watching YouTube videos with time lapse post-chemo hair growth. They are inspiring. A lot of the women have gorgeous heads of hair within a year. I'm sorry you are going to miss out on taking your daughter to the party. Even with a face mask I bet those Kid Zone places are a bad idea for people like us right now. I hope your huz takes fun video of your daughter getting her bounce on so you can all watch it together later.
I'm just starting to notice that my brows and lashes are thinning. Not too bad yet but my MO's nurse told me that they might go after Taxol is over. My bald head is feeling stubbly but I can't see anything yet.
Tomorrow is chemo day for me. I've been concerned since my heart rate has been so elevated (up to 125) and the nurses testing it pre-chemo last week seemed a little wigged out. When I went in to the infusion center today I asked the RN if there was a danger of not getting chemo because the my pulse was too high. She told me that it would have to be significantly higher than it's been before they would call off an infusion.
I got a FItBit today and am committed to getting out there and moving. I've really been laying around WAY too much. I'd love to get my heart rate down before surgery.
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Hi Laxmom- I had my first ten infusions via IV in my arm. I was okay until infusion #9 
 when nurses had to try three times to get cannula in because my vein kept blowing bubbles. I then asked my oncologist for a port. But the waiting time for a port was three weeks, so I had picc line instead. I wish I had a port right from the beginning! The vein on my arm inside the elbow looks weird even now more than two months PFC, pops up like a tight string. Good luck.
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Hi Laxmom - had 12 taxol + 1 AC via IV on the hands. So far so good. Actually I've not seen anyone using port here in Singapore. MO never mention port as an option nor look at my veins. Only know of it thru this thread. I too have some bruises on my left hand due to infusion 2 weeks ago. Just use my right hand for 15Jan chemo.
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Hi, Laxmom - I did not get a port. I was happy not to have an extra procedure before treatment. The IV sites for all my chemo infusions have been spread around between both hands/arms and so far haven't had any trouble. It's just the protocol of my breast center not to use a port unless physiologically necessary for the patient. I've been happy without one.
However, since I'm triple negative I won't have on-going injections. If I was looking at another year of needles I might feel differently.
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Hi Laxmom,
Initially I declined the port. But when my Dx cane back as Her2+ and knew I would be on Herceptin for a year, I got the port.
For me, it was the right decision. I apply lidocaine crime to it before each infusion and I don't even feel the poke plus it's easier for them to find than a vein.
In addition, if I need to have scans with contrast, the chemo nurses will access my port before the procedure so it is being used for that as well.
Glad I went this route.
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I didn't even have a choice on getting a port. My appointment was scheduled less than 24 hours after my "you got cancer" meeting. It happened so fast, I didn't have time to think about it or really understand. It was more involved than I thought. By going to the hospital, being in a hospital room in a gown, surgery room, recovery room. They say you are in twilight sleep but I remember very little...being wheeled into the surgery room, a warm blanket put on me and then waking up in the recovery room.
But my veins would have never worked. They can only ever find a vein in my right arm. When I had my MRI, they called someone else to come run the IV because the techs couldn't find it. Just getting pre chemo blood work is taxing on my arm. I forget what its called but I get red broken blood vessels on my arm from the tourniquet.
My BS said she will have to ask MO, if she can take it out during my mastectomy.
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So this happened today. No more waiting for “someday”.
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Woohoo Sara!!!! Way to go! Did you have fun??
I never really had too much of an option for no port either, I was pretty much told I needed one. But my last two IVs were so annoying, I guess I am glad I have it. It's annoying and I'll be glad when it's gone, but I think it's better for me personally than having my hands (where they seem to be very fond of putting IVs) and arms and fingers poked every single week.
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Laxmon: I have a port and I am grateful for it, I was given the option. My Dad had colon cancer years ago and had a port, I knew it was easy for him and helpful, so my decision was easy. I do not have trouble with veins, but it just makes the infusion simple. I had just figured they would remove it during my Mastectomy, but I have not ask anyone yet... will find out soon.
Joyseeker: Way to go on starting the lessons!! So proud of you! Why wait to start living, we have to do things NOW. You are an inspiration.
Hair: I too have lost about half my eyebrows and my lower lashes are almost gone, still have about half of my upper lashes, but worried they are going to fall out.... how much more can we take???? I too am anxious for the regrowth and will do anything including using a rogain type product to help it get started. I have just felt like as long as I am still on Chemo, no need to waste money. My last infusion of Taxol is Tuesday, so I can try using something soon. I have a meeting with the PS on Jan 23rd.. so looking forward to getting some information to help me make decisions. Should be having surgery sometime around end Feb-first of March.
Everyone have a great weekend!
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Laxmom: My MO and NP didn't mention port to me before chemo. I heard the name “port" from a chemo nurse. I had my port before 2nd AC. It's a life saver for me because I always have tiny veins. BS nurse said it's possible to remove during mastectomy. I haven't decided it yet. I don't know when is the best time to remove it since I am triple negative, I might need it in near future. If I keep it after surgery, the port needs to be flushed often.
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Sara Joyseeker - You look great up there! Good going starting something new when you are in the middle of all this. I hope you have a lot of fun and feelings of accomplishment.
I have a question for my Triple Negative friends. Has your MO discussed taking the chemo pill Xeloda after your are done with surgery and radiation? I know it's a way down the line but I was curious what you were thinking. I'm a little concerned with the hand/feet SE's but likely will go on it.
Happy Friday, everyone!
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Agatha, I am TNBC. Yes, my MO NP told me that I need take Xeloda. I haven't done any research yet so no idea if there is any SE. I have 7 more Taxols to go, still have time to think about it.
Hope you all have less SE and agreat weekend!
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WTG Sara - looking freaking awesome up on that horse
On the port situation, 18 years ago I did not have a port. I had 4 cycles of adriamycin and taxotere. No problem, guess because I was only 36. I had no option this time around. I hate the port but am grateful to have it. My veins would have never taken 12 Taxol and 18 Herceptin. It is annoying, feel it all the time, and the catheter is in my jugular. I see it and can feel it.....yuck
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The riding lesson was amazing. Was wonderful to do something “normal”. Regarding a port. I was given a choice and chose to have one. I’m glad I did. I don’t know how / when I will get it out though 😜. My hair and nails are taking a beating on Doxetaxel. I’m ready for this to be done. A fewer teary days lately. Chemo is emotionally hard. Harder than I thought
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