Calling all TNs
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@gailmary pumpkin pie and cranberry relish sounds yummy.
Hope everyone has a good weekend, with minimal side effects and lots of good energy.1 -
Hi everyone. I hope this finds you all pain free and in good spirits.
Tell me please you don't believe this. Today I spent at clinic. Labs@, dr, infusion. It was cycle 4 Day 1 of taxol, carbo and keytruda.With prechemo meds of Zofran and decadron and fosaprepitant long with sodium chloride. Wow. Ok no surprise there perhaps. But as I am sitting in the infusion chair, I get a notification from my pharmacy that they have a new script ready for me. For zyprexa. Huh? News to me. And then one of the gals in scheduling comes and asks me if I want that echocardiogram before my next appointment?. Huh? What echo? And then I go to see about my appointments for days 8 and 15. He only put in for 1 more week.
Just last week I questioned him about starting AC. Only thing he said was we just go right to it when the time comes. Yeah apparently withOUT talking about it.
So question for you with experience. Is zyprexa commonly given as nausea preventative for AC? For just first 4 nights following Infusion?
The echo I expected only cause the gal that did the first one said that they commonly do several. And might he skip the last taxol and go DIRECT to AC?. What do you make of this guy that won't talk to me?
Interesting that the previous last 3 weeks he asked how I would rate the visit? Well this one stunk big time and he will hear about it fir sure! Is he thinking he talked to me? Ugh. And I don't feel I can contact him through the app cause his nurse and PA preview all messages.
My hairs all gone? What do I pull out now?
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@gailmary Sorry, I believe it! Not sure why their thoughts are all over the place, but they are. They push buttons on the computer and don't bother to tell you what they're doing and why. It's like. we're little robots or something.
I've had Zyprexa (Olanzapine) all along. It's for schizophrenia, but they prescribe it off label as it turns the nausea button off in your brain. I've had several cardiac echoes. The chemo can cause damage to your heart, and they need to watch that closely.
I have the same issue reaching my MO. Getting through her MA was a pain in the ass, so I stopped. I make note of my bitches and gripes, and share with the MO when I go in.
I hope you're doing as well as you can be. If it's any consolation, the AC hasn't been bad for me. I had my final infusion last Tuesday, and though I've had intestinal issues yesterday and overnight, I'm not complaining.Have a happy Thanksgiving everyone! 🦃
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Hi all, just logging back in after a few months off the boards… had to catch up on msgs on this board since Sept! So good that it is so active! I can't remember everything but a couple of things I read I just wanted to respond to with my experience.
@gailmary you had mentioned about a mastectomy with reconstruction on a radiated breast. My breast was radiated in 2007 during my first diagnosis. Despite the risk of failure on the radiated side, I opted for a double mastectomy with skin and nipple sparing and a saline implant. I'm not very big so a diep flap was not an option for me. This was in July and it all went well with only one minor skin issue with the nipple on the radiated side that did resolve itself with a prescribed cream from Dr. I will say that because the skin is so thin over the implant, I can feel it and the radiated side is not quite as nicely shaped as the other side due to scar tissue but otherwise no issues.
Not great that your oncologist is not talking to you directly. Definitely insist. The only time I had an echo was pre and post AC as it can affect your heart so maybe he is preparing for that. I didn't have one while on Carboplatin.
@pinkone501 re Keytruda. It wasn't an option for me 7 years ago but I was told by both my oncologist in Australia and my previous one in Singapore that it is now the standard for TNBC. I did Keytruda during my chemo and now doing it for 8 more post chemo/surgery (so total of a year on Keytruda). I can't remember the size of your tumour so maybe your MO not following the standard protocol because it was really small. What I find frustrating about Keytruda is there is no way to tell if it is actually working … you just know if it is not if cancer comes back. That said I've had zero side effect from it so no issue carrying on.
I'm now onto round 5 of 8 Xeloda which is also apparently the new protocol for TNBC that do not get PCR from chemo prior to surgery. I am doing fine managing the hand & foot syndrome - 12% UREA cream, only use the Diclofenac cream if it flairs up, usually after a day walking in the wrong shoes. BUT now on round 5 I am having really bad stomach pain for 2-4 hours after taking my meds/eating. Going to pop over to the Xeloda board to search from some advice as my cancer centre pharmacist still hasn't called me back after chasing multiple times. Pain is so bad I can't function or sleep during those hours so need to find a solution or stop taking it😯
Wishing you all well. Especially those managing through AC (it really was the worst!)
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@dawn68 welcome back . So sorry to hear about your stomach pain ! Oh no. I hope the pharmacist calls you back soon. Sounds like you might have to stop, but certainly get your medical teams opinion. I was on 6 cycles and a lower dose. Maybe they will lower the dose instead. Are you in Australia? I was a scholar in residence at the university of NSW back in 2017, loved living in Sydney for a few months. There is an Australian cancer app Allevi8, and You Can Conquer Cancer book by Ian Gawler which I really like, in case you are not familiar with his work. Recommend it .
@gailmary I did not take Zyprexa meds post infusion, but had a prescription of Prochlorperazine 10 mg incase I needed it, which I did once or twice a week during AC. It helped, but also made me sleepy, which I liked actually. When I was feeling “off” I would take one and rest, and ten felt better. The the lack of clear communication though… wow that is crazy he doesn’t speak to you. I would insist he spend time with you and explain it all. Or the PA if needed, you have a right to know and ask questions. And yes, It happens though, it’s the part of this that is frustrating. I like to plan, and I like to know… and I’m finding I have to let go of both lol. . So I make a list of questions each time I go in, to make sure someone can explain to me what is happening, and that has helped. Sometimes they don’t know exactly, and I get a well see answer, taking it one visit at a time, once scan at a time. I email them too. And just keep asking until I know. Evolving my mind and practicing patience is the name of the game
@justsnapd8 congrats on finishing the AC. How wonderful it was not difficult for you. It was hard for me, I was so happy when it needed. Good luck with the next steps !
@pinkone501 hope all is well!
Sending hugs to all, and a happy thanksgiving for all who celebrate.0 -
@rlschaller yes I am living in Queensland near the Gold Coast now but lived in Sydney for 2 years and then 21 years in Singapore 😊 — originally from Canada. I'll check into the Cancer app and the book. Thank you ! I'm only on 2,000 a day Xeloda. The pharmacist did call back and recommended I take my nausea meds and/or Gastrostop for the pain. Neither worked. I Googled (I know, I know) & eventually took Tylenol for the pain which worked. But I don't like taking it as my liver doesn't need more stress. Anyway I didn't take my Xeloda dose last night nor will I this morning just to give my system a break as that much pain can't be good. I'll call my Onco later to let him know. I've done 8 days of this round so I'm hoping he gives the ok just to give it a rest for the rest of this round.
@gailmary thank you for your PM suggestion, I'll try that too to try to get my system back to normal.
@justsnapd8 didn't see that you finished AC. Well done! For me anything after AC was easy.
Canadian thanksgiving is in October but I have an American friend here who has invited us over for Thanksgiving dinner this weekend so I'm looking forward to it. Her hubby is an Aussie so of course he is doing a turkey in the smoker… sounds delicious.
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yep, I'm thinking I'll turn my chair around and watch what he enters in computer. I will tell him I don't like surprises. The nurses will answer anything but he should be telling me.
Rhonda, you are right about not being able to plan. I understand that to some extent. And I never asked him alot in the beginning. I already understood. But this is different. I never had chemo. I have questions. Sometimes he says to ask the girls. I'm Supposed to call or email questions, what am I supposed to ask? Why won't won't he talk to me?
well, I hope you all had a good thanksgiving. Mine was very pleasant with my little family. Couldn't eat much, but didn't make much either.
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oh Gail, it’s so hard sometimes, I know. I’m never sure what to ask either. And why he won’t talk to you is a mystery ! For questions, To be honest, I Google it sometimes. I just did and this came up
- Which chemo drugs will I be given?
- How will the drugs be given to me?
- How often will I need to get chemo?
- How long will my treatments last?
- Where will I get chemo?
- What's the goal of chemo for my cancer?
- What are the chances that the chemo will work?
Hope that helps a little bit. I read about the treatments on either the Mayo Clinic or the MSK websites which are helpful. And here as well.
Had a lovely Thanksgiving with my son and his wife, and my husband. Small gathering, and the food we ordered in form the restaurant wonderful. Will definitely do that again. And since I had steroids with the infusion the day before, I ate 2 platefuls. And the fun part was I allowed myself to drink wine with the meal, and had a brandy and bourbon with blackberry liquor for dessert. Just a little, and it was tasty..a little splurge.1 -
Dawn, how are the stomach pains?Better I hope.
I just spent 6 hours in ER . Got a blood transfusion. The anemia wasn't that bad but bad enough. I couldn't do a flight of stairs. Dizzy and about passed out. Feeling better and hope it helps through the AC which doesn't start for 2 weeks. I hope I'll continue to have no nausea once I start that.
I've made a list of questions for the doctor but now must rethink it after the ER visit.
We are into Dec now. It will be interesting to see how much help I get with Christmas prep. I typically do just a little with just the one husband and daughter to share it with.
Time to be jolly!
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Yep pain resolving itself after stopping Xeloda so that was definitely the issue. I'm just waiting to hear from my MO on his thoughts on this side effect. We had a planned delay to not start the next round until Dec 23rd anyway so hopefully the extended break will help my system heal.
@gailmary sorry to hear you ended up in ER. Definitely best to get that under control before AC though.
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Gail - so sorry to read you were in the ER! Omg. Hope all is stable now.
And I love time to be jolly. We celebrate both Hanukkah and Xmas so this year I bought blue and white felt garland balls with stars to hand around the mantle to go with the stockings. Lol… it’s just my husband and I and the cats, but I love a little cuteness around the house. My step son will fly in from CA and son and daughter-in-law will come down from Rockland county Xmas / Hanukkah week but the decorating is my bit of fun. Also have a mini fake tree I put on the dining room table, with mini ornaments , that’s next weekends fun.I start the Carbo / taxol regiment tomorrow to stabilize the post radiation success, which I think is the treatment to maintain for as long as it lasts. Both are low dose infusions, but I’ll have more info to share after tomorrow, which is infusion day.
Dawn - glad the stomach pains have subsided. That darn Xeloda. I hope the break brings your body back to homeostasis.0 -
Hi guys. I’m popping in to let you know that I have hit my 5 year anniversary from the date of surgery. I’m always nervous about posting these milestones because I keep thinking that I’m just jinxing myself. However, it really helped me when I was going through treatment to hear that others have made it to 5 years. It has not been easy, and there have been lots of ups and downs.
My treatment started with AC and my first infusion was very difficult. I did not have a port for the first infusion and my arm was very swollen. I was also given zyprexa as a premed and I had a bad reaction to it. I slept for over 18 hours, and when I woke up to go to the bathroom, I fell twice and had a concussion. I did not get zyprexa again. After AC and in the middle of Taxol, the oncologist did not think the chemo was working because the tumor on the breast did not appear to be shrinking based on the oncologist’s physical exam. It was recommended at that point to consider a clinical trial. I was devastated. Fortunately, I had to have an MRI of the breast before I started the trial. We were shocked to learn from the MRI that my tumors (breast and all the surrounding lymph nodes) were not detectable on the scan. We were elated and we continued with Taxol. After a few more taxol infusions, I developed an infection and had to go to the emergency room. My ANC had dropped very low and they wanted to keep me hospitalized, which I refused to do. I was given antibiotics and I basically isolated myself from others until the next blood draw and infusion.By surgery date, we were all hoping for a PCR based on the MRI results. Unfortunately, I did not get a PCR. I cried (bawled would be more accurate) in the recovery room when I learned the news. It was recommended that I start a clinical trial that had keytruda and Xeloda. The clinical trial fell through because they could not test for PD-L1 as there was not enough tissue sample for the test and my ANC was too low. Another disappointment, so we moved forward with radiation and Xeloda.
Xeloda was hard for me. I had constant headaches. I had to take two breaks from Xeloda due to side effects.
Treatment was not easy and it really takes a lot out of you physically, mentally, and emotionally. I’m really grateful that members of this website are willing to share and help because it got me through some tough times.
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Hey Ladies, hope you all are doing ok, hope everyone had a great Thanksgiving, I only have 2 taxol/carbo left, haven't been that bad but the extreme tiredness on Thursdays and Fridays after a Monday treatment I will not miss, I guess after that it will just be the blood work and a scan here and there
Doctor said she was not sure on any radiation yet, the specialist at the Dana Farber institute said she saw no reason for it, said no data really showed any need for it after having radiation to that breast in 2007
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Norcals,thank you for sharing your story and giving us hope. You sure had a hard time. I hope it's allll behind you. I'm one that's less concerned for myself than those I may leave behind. I am optimistic. Yesterday MO said "maybe a little too optimistic". Yikes. I think I'm realistic. I'm not naive. I'm not in denial. But I do believe a good attitude is important. People hate the negativity. Maybe a little like Rhonda - im gonna die happy if it's the last thing I do.
I'm glad my doctor recognizes were all different with different reactions and needs.Yes there is a chance I will need another blood transfusion. 1 taxol left then 4 AC. I stood and looked over his shoulder. He goes through computer so fast. I decided I will have to ask each visit 'what are you ordering for me today?" I already know the nurses will fill me in on AC.
Pinkone, interesting comment that there wasn't really a need for more radiation since 2007. I had radiation in 2009 and they told me after that long I probably could get some more but nothing has been said. Maybe the surgeon will send me. But 6 months of chemo followed by mastectomy is enough for me. What would they radiate? What damage would they do?
Wouldn't you think tracking all this/us would be helpful?
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@norcals thank you so much for popping in. It is so good to hear you are doing well and I can well relate to parts of your journey. You must be sooo happy to hit that 5 year mark! As I am now at the Xeloda stage (after also not getting PCR 😪), it is comforting to know you also took 2 breaks and still had success in keeping the cancer from spreading/coming back.
@pinkone501 the extreme tiredness on carbo was also the worst side effect for me. Same days in my cycle. That said they had me take a steroid for the first 2 days after infusion so I think I just crashed on day 3 & 4 😁. On radiation, I did read that recent article that said it may be okay after a long time, however, the negative effects of double radiation only show up later so hard to know at the time how your skin will react. I had full breast radiation in 2017 so I wasn't given the option. My RO wanted to radiate my supraclavicular nodes as they were not radiated previously but neither my MO nor myself see the point given I am on Keytruda & Xeloda.
@gailmary good on you for taking things into your own hands & spying on your MO 😂. But seriously, it is good to ask lots of questions. My MO communicates but always seems like he is in a rush & I do feel a bit like I'm annoying him with all my questions but I don't care. Sadly there is a high demand for MOs so they always have a lot of patients… too many. I love your attitude though. I truly believe that a positive attitude makes a huge difference in our healing process.
@rlschaller sounds like you have a lovely Christmas planned. Our little brick cottage is all decorated and we picked up & decorated a real tree last weekend. We are going away for 2 weeks to the Christmas villages/markets in France; leaving tonight so super excited about forgetting all about the cancer stuff for awhile. MO has given me permission to enjoy the occasional glass of wine/champagne 😊
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I went in for infusion yesterday, but my MO made an error in ordering the Taxol. She didn’t realize I’d been on that particular taxanes drug before ( she was not my MO then, but it’s in my chart ! ) Anyway, she changed the script to Carbo + Taxotere , and it’s full dose not low dose. Taxotere is the same family of drugs as taxol, so ability to dissolve / stop the cancer growing should be the same. We’ll see about the side effects, with infusion every three weeks not weekly, so that is really good news. I’ll keep you posted.
Gail - Hope you don’t need another blood transfusion, but glad you are OK. And you are so right - if it’s the last thing I do, I’m dying happy lol ! Optimistic is realistic, there are always best case scenarios, worse case scenarios, and probable scenarios. And it’s all approximate so pick where you land and allow Hope to be a guide. I’m with you.
norcals - what a journey. So happy to join in on the congrats for your 5 yr mark ! That is awesome, and so are you. Getting through these challenges and finding the opportunities to share and bring light to dark situations is a gift.Dawn - enjoy France ! Woo hoo, sounds amazing. I’ll toast with my apple cider to your champagne in spirit.
pinkone - nice to hear your update . Just two left , fabulous.0 -
Finally sitting down. Thought it was time to pull out the holiday decorations. I love decorating. We have a mini Xmas tree that we put on the dining room table, and a variety of mini ornaments - and it still took me a few hours lol. Also put up the mirror cling Happy Hanukkah gels , dreidels, and a sweet little garland with blue stars I got from Etsy. Our plushy Santa is on the mantle too with the stockings (for the cats since the kids are grown ups now) The new addition is a string of twinkling mini lights from Michael’s around one of the bay windows…so pretty. We live next to park, and you can see the NYC skyline now that the trees are bare, framed in the twinkling lights is nice. I’ll see if the cats let it stay up more than a day.
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Good morning everyone. Anybody happy out there?
Drugs are a wonderful thing. My antidepressant is doing a great job. I am assuming the chemo is working it's magic too. Side effects continue to kick in. Still mild and annoying but tolerable.and yes I am really tired of it. I count my blessings daily yet I loose track of how many.
When I left ER last week I noticed some sciatica starting. I thought irritation from the way I sat in bed for 6 hours. Wrong!. The slightest tingling in my fingers the last few evenings. Yikes. One taxol left tomorrow.
The Snotty nose continued the whole time but the funny taste buds has been random. Blurry eyes several days each week. The constipation from the Zofran alternates 3 to 5 days with diarrhea for 3 to 5 days from the chemo. I do nothing about either. No nausea. Hairloss, of course, at week 1 I cut it to a 2.5" pixie. Trimmed to 1" later but never shaved. Short of breath of course usually. Tired low energy cold all part of anemia and chemo. Appetite could be better. But I'm 68 and getting old that's all! Gotta be happy about that.
Haven't been able to walk much. But I continue to do some sewing. House is a bit of a mess. Half ready for Christmas.
I hope you are all doing as well or better.
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Gee Rhonda ya can't catch a break. I guess every 3 weeks is better than weekly. She's sure liking the carboplatin for you. I don't get how she can repeat that one but not the taxol. That whole thing confuses me. But if you've not had success with that combo before I get it. You know my dr isn't the one to ask. I'll worry about it in a few weeks. My dr wants me back on faslodex for my first cancer then. .
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Gail - I hope your last Taxol chemo (yay) went relatively smoothly today. I’m glad the many alternating side effects are manageable. For me I remember thinking they were there, like minor annoyances. If it was killing the cancer cells, I could breathe my way through it. Sounds like you are doing the best you can. I love a messy house lol.. and half ready for Xmas sounds lovely.
I feel like I’m majoring in Uncertainty. So are we all , life is truly filled with ups and downs, and all you can do is the best you can. And laugh. I’ve started watching clips of stand up comics, and I have to say it is super fun. I put my ear buds in, grab my iPad and have a giggle. saw my MO today, she thought the breast looked really good today as the radiation is healing, and still can’t feel anything, so no mass anymore on exam. Infusion # 1 is tomorrow. Then MRI next week, and PET scan. I’m feeling really upbeat tonight. It’s raining, and classical music is playing, and I’m alive and happy. Just taking it one day at a time.0 -
Rhonda. Too funny. Yes minor annoyances and the office visits - inconvenient.
A little shopping yesterday and I found myself singing along to Christmas carols.
Sounds like you have the right attitude for uncertaintity. And the drs no help!.
I got a pleasant surprise today when dr said we could wait till Jan 2 for starting AC. Mri first though. Should have asked why.
Then he Went on and on about a study for tnbc about just doing the first part of chemo like i have and if there is Complete RESPONSE THEN GO STRAIGHT TO SURGERY.
I was unclear if he was actually suggesting it. I didn't question cause I'm not sure I'd go along.and he doesn't have mri results yet. It was a small tumor, so maybe.
MRI is Wed the 18th.
Hope everybody is enjoying Holiday prep.
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Morning Ladies, hope all is well with all of you, Monday next week will be my last Taxol/Carbo, then meet with the radiologist to see if radiation is needed or not, hopefully not
I am totally exhausted today , but then again every Thursday is my rough day
I ordered a platter of 4 dozen Christmas cookies to take to my chemo nurses on Monday
Hope all of you have a great Christmas
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@pinkone501 congrats on reaching your last Carbo taxol! If you do need radiation, I have to say mine went really smoothly. It was just the logistics really of going daily, but it worked well and no bad SE, just some peeling and sunburn. Your lucky nurses getting cookies , that is so sweet of you. Happy Christmas to you too !
@gailmary love that you were singing carol’s along with the music while shopping, love how that can just bubble up inside. My first time around they also did a MRI in between Carbo taxol and AC. They like to have a baseline with each treatment change I’m told. Good luck with your MRI. Keep us posted. And how nice to get a drug holiday till Jan 2.
I also go for my MRI next week, PET on the 18 th and MRI on the 19th so they have a new baseline for the Carbo / Taxotere. So far so good, day 4 feel a little sluggish, but fine. No nausea no bowel issues, no fatigue.. just a little off. A familiar feeling from these type of drugs as I remember. I am excersise each morning and eating very cleanly, a Whole Foods diet plant based and both help enormously. I’ve started to make fresh ginger tea with green tea and peppermint steeped within it and that is yummy. Also a good nausea prevention. You boil 4 cups of water with an inch of ginger for 10 minutes covered, and then add the tea bags of peppermint and green tea, shut the heat and let steep for another 10 minutes. Drink throughout the day. I like that better than drugs, but have the Zoltan if I need it of course. Wrapped presents this morning, and off to the Apple Store to finish the shopping. DH wants an iPad.. lol
Happy Saturday and holiday prep to all - Rhonda
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Rhonda did you get the results of your pet? I hope they were good.
I got mine. Tumor shrunk from 1" start to 1/4" now. The drug holiday has been grand. Still hoping my taste buds return to normal soon so I can enjoy the tastes of the season. I'm good either way.
Happy Holidayd to everyone here.
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Gail- wonderful news, congrats that’s fabulous news to start your holiday week. Always so nice when the chemo works, puts you in a great position for the next round. So glad the drug holiday extends till the new year. Enjoy. ❤️
No, I haven’t heard back yet, as my patient portal is wonky. Should get a text this coming week probably. But I feel great, like normal and that’s so nice. Had a great visit yesterday with my step son, son and his wife. We ordered in Chinese food and laughed and took silly pictures, exchanged gifts. Now I’m on vacation from work for three weeks .. life is good.
Have a very happy merry holiday to all ❤️
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