Chemo starting April 2018
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Innba2018. I bit my check twice while on A/C. I was worried to. My OC told me to continue to gargle with the salt and baking soda mixture. It did seem to help a lot and the sores healed before next treatment.
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I feel the new test, TAILORx is still inconclusive, with a big gap in the middle still not explained and not very straight forward. My onco number was 28, so j guess I would have still needed chemo regardless. But my onco Dr. Told me with the 4 dose TC my number would then be like 14. Significantly lower. So does this change with this new study? I find it alarming and confusing that with this just out my clinic is not bringing it up, or offering new stats. And related information.
So hope all went well for others in treatment today....Duffysmom? Frog, I still haved one to go on June 26, today was fine, blood labs good, glucose good, the IV was problematic, hurt like a mother, first time that happened. The nurse seemed displeased that I was quiet and reserved. I had been up most of the night before and I'm not one to put a pretty face on a sows ear if you get my drift. I just cant pretend im sitting at the state fair eating cotton candy watching a circus. I'm polite, but withdrawn. Maybe she just rammed it in . We ate a sandwich lunch, and i had No reactions to meds, , got a refill on my Xanax, so I can. Sleep. Neulasta pump boarded and loaded for tomorrow.
Hope you ALL are well, tasting, eating, smiling and pain free.
Deborah
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Djt.
I dont know about you but that neulasta pump is the worst for me. A necessity but still. Ugg!!
About this Xanax? Does it help with sleep? Is it a sleeping pill?
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Hi, Deborah, well that was kind of judgey of the nurse...did she want you to cry? Ugh! We all approach thus differently—there’s no right or wrong unless one feels like self-harm. Argh, people...I’m like you. I put on headphones and want to cocoon. I know for others, chatting is helpful. Whatever works!
I did 9/12 today. My Mammoprint showed a significant (20%) reduction in risk with chemo—even node negative due to the high grade and Her2 status; it’s also Luminal B, another risk factor. So I agreed. I’m almost done, so yay! I also think the Tailorx needs some more scrutiny and wider opinions.
I asked MO if she could cut my steroids—she was fine with it. I felt more groggy from Benadryl but definitely not jittery and cranky. No other issues. The infusion nurse fussed a bit...they cut the dose from 12mg to 4. I think she thought I would have a crazy reaction or barf, but MO said it was very unlikely since I’ve done so well through 8 infusions. So yeah, I think I like the smaller dose—enough to help, but not too much.
MO also wanted me to continue 25 hours a week through radiation, but understood my leave/work situation. (I have FMLA time, but no concurrent sick/annual leave to last that long). If they won’t approve 40 hours, I might as well quit treatment since I’ll be out of leave and getting no income.
So here’s to getting som sleep tonight...hope you are all well today.
Dee
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Llife, as others have suggedted the nulasta type pain in bones is greatly reduced by taking regular Claritin. I also take 2 ibuprofen. In about 5 days, it's all over with. I also think walking moving helps. Almost totally 0's out bone pain. The Xanax is a controlled substance to reduce anxiety and to assist with sleep. As your on Dr. There is also over the counter Tylenol PM.
HI DEE, so glad today is over. I think I make her nervous, I hate to think she would make an IV painful delibratly. I im just not a social butterfly kind of person, and i do my best, but iv been told as i come across as sort of tough, i guess i would say. Maybe resting bitch face syndrome. Idk.
I'm glad you could reduce your steroids, I only get the IV dose at infusion, they let me drop the 2 on day before and day after. Big difference. Plus my glucose levels are lower without them . My onco Dr. Told me the only real purpose the steroids serve is to keep swelling down. I hope you get your 40 hours fmla, bring documentation and Drs. PRESCRIPTION drugs don't quit ...you about got this.
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Hi All! Halfway done with my chemo now that Round #3 is over. Port was a little finicky yesterday but all in all not a bad infusion. Arrived around 8:30am and was home resting by 1:30pm. I had hoped to nap in the afternoon but Steroids just not letting that help. I convinced MO to switch me from Xanax to Ambien. I was wanting something a little less addictive. My mom has been on Xanax for decades and she just can't quit it. He started me on the lowest dosage 5mg. I was pleasantly surprised. Still able to wake for dog and me potty breaks which also allowed me to continue with my alternating nausea meds throughout the night.
Infusion nurse didn't seem to concerned about the arm swelling last week. She suggested just to monitor it and if it happens again they may need to do an ultrasound. But since it is on the opposite of my node removal she thought watch and wait was sufficient.
Deborah - sorry you had a bad nurse. (let's face it they do exist). This time around I'm definitely more all business. I closely watch my meds and ring for a nurse as soon as bag empties. I'm not there for fun and games get the drugs in and get me out of there is my new philosophy. When I think I have a year of Herceptin to continue. I just want this process to move along.
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Duffyzmom, congrats on the halfway point!
My nurses have all been pretty nice, thankfully. I definitely slept better on the lower steroid dose; I'd just been getting it preinfusion, not other times—I sure would have been a wild woman otherwise, lol.
I do wish I could get some Ambien or Xanax. No joy. They prefer melatonin and Benadryl. I got an Rx for Tramadol for bone pain, and here towards the end, it's barely covering thst pain, even with adding Claritin. But I think I can push through the last 3.
Frog, that’s interesting about darkening nails and palms. Do you think it’s Taxol combined with ac? Or just Taxol? I get a brief weird mouth sensation on Taxol, but what I feel more is tingling in feet and hands. Luckily it tends to go away. It’s not painful, just weird. I have kept a good hard nail polish on, and that has helped with the nails. I see odd discoloration too.
I want to spend more time reading the Tailorx study...if it’s valid and reliable, yay, but it sounds like there is some ambiguity. That’s me, an older GenXer...trust no one, lol.
Dee
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I read 3 versions of the TAILORx study this morning. I'm not a scientist (just married to one and spawned one); I'm a history professor, so I think it's important each woman reads the research and talks with her doctor.
Takeaway: If you are Her2+, these women were not included in the prospective student (which looks at results from a cohort over a period of time; this one was long). It looks at the most common type of IDC, which is E+/P+/Her2-. The study examined patterns from the OncotypeDx tool; the big question is "what about women in the 'gray' area?" Would they benefit from taking chemo? Would their DFS rate be affected by not taking chemo? It also examined women with the lower numbers from the same tool. And yes, the data seem to show that these two groups do just as well without the adjuvant or neoadjuvant chemo. Of course, it's vital to talk to your doctor--further genetic tests, tumor grade, and personal choices have to play a role. Shrinking a tumor may also enable your surgeon to achieve better results, so there's that to consider.
I think I'm glad I went with Mammoprint rather than OncotypeDx testing--it's more "yes" or "no." There were no gray areas. It spelled out precisely the benefits of doing chemo for me. I was pretty upset about having to do chemo and Herceptin, but for my personal cancer type, the data were clear--chemo would make a difference. Herceptin, even with the risk of cardiotoxicity, was quite needed. And I asked a lot of questions, which were answered thoughtfully. So, really, I think *that* is the most important thing--talk it over. Think about it deeply. Use data as a tool for decision making. Ultimately, it's your call--a very personal decision. And since the "big meeting" just occurred this week, don't worry too much about "if we'd known sooner," if you can. I'd say if you think you are in the group where it may make a difference, repeat the talk with your doctor as needed. Having gone through cancer with my mom in the mid-1980s-mid '90s, I am utterly amazed at how far things have come, in a good way.
Wishing all the best with these weighty matters,
Dee
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Dee, thanks for the info, and review on the new study. You are right, it is weighty matters. My breast surgeon who is head of her her teaching department, had a week long conference right after my first surgery on Feb 14, this year. When we met afterwards, she told me there is so much new information, and changes in how it's being treated that there was like 5 new discoveries a month. One she reviewed at her Florida conference, I believe was this new Tailor X. She was very thrilled at the new advancements in the breast cancer field. As she alluded to the study would decrease the number of woman receiving chemo.
Duffysmom, glad #3 is over for you! Try to flush steroids out with lots of water, I know I hate them too. try Tylenol PM, I think it's as good as Xanax.
I just put polish on a few days ago, and I swear my bit. B12 sublinguak with other B.s. really keep my nails going strong. I did wake up today with hives all over my arms, and chills, but no fever.
One day at a time I guess🌸🥀🌷🥀🌺🏵💐
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Djt - I have been taking Zyrtec and Pepcid for my hives and it seems to be working. It doesnt get rid of them completely but it has helped.
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thanks, Leil, I can try that. I put a call in to the nurse as I never got this before. It's only on my arms, and I don't know it's it really hives,...it's red blotchy marks. Hydrocortisone did not help.
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Woot! Did the last of my AC yesterday! I start Taxol on 6/20. Looking forward to moving on to the next thing (but not the SE's of T. Sigh).
Urdrago, you're on my mind - how are you doing? Will you be able to get your next T?
DebAL, congrats on finishing chemo - so jealous!
Djt and astayanax, you're almost done! Djt, hoping your hives go away! Benadryl, maybe?
Frog, I'm sorry to hear things are tasting bitter. I've been pretty happy to get through AC with no taste change and my appetite intact. Not looking forward to that changing with T. I'm with you - this seems like a nightmare and I still can't believe I'm going through this. RE: your nails - I think I remember that you mentioned not icing your hands/feet because the MO didn't seem to support it, but I've learned that you have to be your own advocate. Ice if you want to, the rest of them be damned. This is your body - they don't get to dictate anything or shame you into doing things differently than you wish to. Bring your ice and show them it helps! <steps off soap box>.
InnaB, for my AC, I take Zofran through Day 5 (counting infusion day as Day 1). We're all different, though, so you might need yours longer. For example, my Neulasta bone pain didn't hit me until Day 8 on the first round and I had quit Claritin after Day 5 based on what the "norma;" was supposed to be. Remember to keep a diary of this round )what you took each day, symptoms each day, etc.) It really helps guide you for the subsequent rounds. Since I did that, I remembered to take Claritin through Day 10. You think you'll remember it all, but it's too much to recall by the time you get to the next infusion.
Duffyzmom - halfway done with everything - yayyy for you!
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Gawarrior, I'm doing the best I can through the T treatments. I have low WBC(2.4) and will be finding out if I will be doing shots at home. also I requested the office to look into my iron levels and see if we need to address my anemia as I go through another 10 weeks of chemo. I still have shingles and they are painful enuff to get my attention. Trying to keep a baking soda patch on the top of them to relieve the burning and itching.I've been working ever day but decided that I will stay home Friday and work here less stressful. How are you doing with the last AC treatment? Congrats, you made it thru that..
Don't been scared with the T as it's not horrible and I feel a lot better after the infusion. I think all this SE's is just the low blood work from AC. also I do the same, paint my nail to help support them as we go thru Chemo.Curious for all that has hives how do you know it's hives? How long have you had it?
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GAWarrior, congrats on finishing the AC part! Did you find the SE’s effects cumulative?
Urdrago, feel better! Djt, leli, ditto!
Went out with my girlfriends to a trendy French restaurant today. Was very happy I can still appreciate a good foie gras. No vine, alas, but at least my taste buds are still working. I am learning to cherish thesmall moments of happiness in this unpredictable world...
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urdrago71 - I think it is hives (hive-like) because it is all over my body - the itchy area gets warm and reddish; it is only when I scratch that the welts (raised skin) appear. I've looked at images on the internet to compare. Besides the Zyrtec and Pepcid, I apply ice packs to the areas that are really itchy. They seem to go away when I dont scratch. It is really bad for a couple of days but it eventually subsides. The key is not scratching. I didnt have this type of reaction with round1 but it happened with round2 and round3 at about the same timeframe - around 10 days after chemo. If it is not hives, at least I know it isnt anything too serious since it does go away and my skin looks normal again.
Djt - I tried so many topical ointments/creams and none of them really worked. Staying cool and ice packs really helped to stop the itchiness. For me, scratching (even a little bit) really exacerbated the itchiness which was very difficult when you instinctively want to scratch.
Going for my last TC tomorrow morning. I'm really anxious. I hope I can get some sleep :-)
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Welcome back Gawarrior glad your done with A/C! I have a better appetite with Taxel. Thanks for finding the chat board about my face becoming numb. I took your and Undrago71 advice and told my dr. Now he wants to do an MRI on my head Friday to make sure everything is ok. I am a bit freaked out about this. Stay calm and think positive thoughts. Right?!
Undergo71 hope you get to feeling better and find some fast relief!
Djt thank you for all that information. I may need something just to make it through the MRI on Friday.
Well ladies I guess I am just gonna have to grow a thicker skin as I am quite sure I will be having more of these types of test. Most I have done is and exray and ulter sound and one MRI on my knee. Never had to go into the actual machine head first. Eck!!!
Dr did prescribe some heavy duty stuff for my hand since they are literally peeling like a snake! Craziness!!
Have a wonderful peaceful night and best of luck to anyone getting ready to head into treatment this week!
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DJT: My wife had something similar happen with her first round of TC. It was a red, splotchy spot, but only around where they put the IV in. She did get a raised rash on the back of her neck.
Good news today: They took out the check drain and the mid-line. Interesting that both the surgeon, the RN in the infusion center where they removed the mid-line and my brother in law, a retired oncologist and ER doctor all said it is a good idea that we changed the next TC infusion to one week from now instead of tomorrow. Let things settle down and heal a bit more.
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Life, u didn't get MRI of Breast before u started with Chemo? I only ask bcuz I did, and it sounded like pretty normal process. I wanna make sure u know we are all here with u to support u as u go thru this..Always remember that, private message us or blog on here but we got ur back. Positive vibes..
InnaB, thanks for ur kind words, I'm trying to. lol I'm going to infusion tomorrow and Friday working from home..rest and water all day l
Engine, thanks for some good news for u both some time to heal does us all good.
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Urdrago, hang in there! Sending love and positive vibes.I'm also anemic and low wbc (mine were 0.06 at last blood draw!), but I'm hopeful they'll stay higher after the Ac wears off. Are you icing your hands/feet? I will be doing that, I can't afford to have problems with my fingers, due to my dental hygiene job. Remember, too, that some of the ladies on here are doing DD T so I hoping our SEs won't be as dramatic. Good luck with today's infusion - rest up!
Good news, Engine!
LIFE, I also had an MRI of my breasts before treatment. If you are claustrophobic, when your head goes in - know that the machine is lit from the inside, they will give you headphones to listen to music, and you can close your eyes to help. They also give you a panic button to use if you get really upset, but the procedure very doable (says the person who isn't claustrophobic). You'll get an IV if you're having contrast (likely?) I had one of my biopsies done via MRI and I'd totally rather have been in the tube, closing my eyes and relaxing on my back rather than lying on my stomach with the girls hanging down and being compressed in a grid while they stuck needles in me, lol.
InnaB, I never had problems with my taste or appetite - I think the taste thing happens more on T, so I'll keep you posted as I go through it. AC effects were sort of cumulative -I was more tired and for longerwith #3 than the first one (I'm now anemic, with low wbc to boot), but they were also easier to manage because I knew what to expect. We'll see what #4 brings - my "flu" usually comes on this afternoon and lasts until late on Friday.
leli, congrats on getting your last T this morning! Now, you just gotta ride out the SEs one last time! Hoping your hives get better asap.
Robin
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Engine, happy to hear good news about your wife. And may I say, you are an amazing husband! She is one lucky lady! My husband is also very supportive and caring, I don’t know how I would pull this off without him. It was actually one more source if my stress after the diagnosis: I felt he deserved a better wife than me. At least a healthier one. He had already nursed me through 3 very difficult surgeries on my foot, my wrist and my back, and now this... And I am only 45 years old. Who knows what will happen if I live to 60? He might become a professional nurse after all this 😋.
GAWarrior, thank you! You put things into prospective for my next 3 AC treatments. I will be doing dose dense Taxol after it, so I am really not looking forward to it.
Life, are you doing neoadjuvant chemo? I did an MRI before my BMX, but had to get a CAT scan of my head before chemo because the bone scan showed “focal uptake of dubious significance” in my cranium. It ended up being nothing at all, but the waiting for the results almost did me in. I was reduced to a crying mess. I know how you feel. In my case, I gave up and asked the doctors for anti-anxiety meds. If you want, PM me any time. Watch comedies, it worked with me. I highly recommend The Marvelous Mrs. Meisel on Amazon prime. It’s hilarious. And stay positive! I’ll keep you in my thoughts.
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Thanks, InnaB. I guess all I can say is, I know she'd do the same for me. This, as I've mentioned is our third time at the cancer circus. If I may say, God has gotten us through it the last two times and he will do it again this time. I pray the same for you and all the amazing women on here.
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what a group here...so many going through so much. And everyone trying so bravely to put a smile and a kind word in for everyone else, such a gracious strong group, i admire you all, and am thankful for the board ...its a refuge, a safe understanding place to come when needed. Blessings and thanks to all here this day.
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Urdrago, thinking of you as you go through Taxol. Hope you have really minimal SEs. Lots of hugs.
GA Warrior, congrats on finishing AC. Weekly Taxol is doable after AC, you will have more energy. I am saying this based on my current situation at Taxol 2, day 4. I do not know how the next few weeks are going to be but so far so good. I cannot ice my hands. As it is my fingertips feel really cold. I cannot imagine icing my hands and toes.
My kid is at home with a really bad cold and I am trying to do everything from a distance, if that is possible with a 6 year old.
Djt, I agree with you, lovely group of people here. Wishing everyone a good weekend.
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No ladies I did not have any scans before treatment. I had my yearly mamo that found the tumour. I had a ulter sound to determine size and if in lymph nodes. I had my biopsy to determine if cancer and what type. Had a lumpectomy and nodes removed. Was staged 2B with one node effected. Did Oncotype DX test and my number was 44 which brings me to chemo land, 4 A/C and 4 Tax, radiation and 10 years on hormone blockers. I guess my dr will scan when done with chemo? I believe that will be a question I will be asking him next Thursday for sures!
InnaB2018. I cry a lot myself at the drop of a hat! I try to keep my emotions under control, tell myself I am going to be ok and this could be way worse. However, I keep losing that battle and end up in tears or thinking the worse. I wish I could find that inner strength and get through all this without being such a mess. Ugg. I do LOVE comedies and will definitely be checking that movie out! Thanks! Also, sounds like you have got a real good man there! I am happy for you. You are totally worth it too!!
Leli Here is hoping that your last t/c goes well with no problems! Go you!!
Undrago71 Thank you for your words of encouragement! Hope you feeling better every day and that your resting easy after your recent treatment.
GaWarrior you crack me up! Tomorrow I will probably start laughing if I think about that scenario!
Engine104 glad to hear that your wife is getting some much needed down time for recovery before continuing. I agree your are truly an amazing man! I think it is awesome that you believe God has taken you through everything. I too believe his hand is here as well. Now if I could just learn to lay this at his feet and stop picking it back up. The struggle is real!
Well my two fur babies are staring at me wondering if I am every going to feed them. Lol
Have a wonderful weekend and sorry if i missed anyone out there! Lots to catch up on with so much going on with everyone. Could not have asked for a better group to be connected with. You all have such kind hearts!
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Hi Life1963,
Yeah, laying it all down is the hard part for me as well.
My wife is better with that than I am. Her brother is here until next Monday, so she is able to have a nice visit as well as rest up for the next round.
Thanks so much.
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Life, my story is the same as yours, only I opted for BMX instead of lumpectomy. My doctor said if there is at least one affected node, they don’t even do Oncotype test anymore. To them, it means that metastatic process has already started, so cancer will recur if left untreated. I agreed, because my research supported this statement as well. In 2 weeks I am going to see a radiation oncologist to determine whether I need rads after chemo.
Curiously, my outlook at life improved since I started chemo. At least now I feel like I am doing something and not just waiting for another piece if bad news. I do still cry sometimes, though. Mostly when someone does something for me. I am just getting overwhelmed with gratitude and pray to be able to pay back this person for the kindness and support they showed me when it was needed the most. Sometimes I get scared too.
You can try acupuncture to make you more grounded, or the doctor’s favorite: Ativan. It’s an anti-anxiety pill. I took it for awhile after my diagnosis. Also, you can request a psychologist consult. My hospital provides it for free to all cancer patients. I am sure your facility does something similar. They even offer to come and talk to you during the infusion, if needed. Please remember, you are not alone! We are all here fighting the same battle here and hoping for the best.
PS, The Marvelous Mrs. Maisel is a show, so the hilarity will last for a couple of days at least, guaranteed! 🤪
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Urdrago, how did your infusion go yesterday? Wishing you a pleasant weeekend and respite from the shingles.
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Rough couple of days here. Poor Duffy took another turn for the worse and I had to say goodbye yesterday. 😢
I'm keeping myself busy to try and not think about it. InnaB I've watched Mrs Maisel about 3 times now. It's my go to show for when I think I may fall asleep since I've seen all the episodes multiple times.
So far the Prilosec is helping with acid but usually Day 6 is worst so I'm being very careful with what I eat. Lots of Akaline foods.
All the recent cancer research has my head spinning. I got my hopes up maybe I could reduce Herceptin but it looks like most of the new research is directed toward ER+ and not ER- cancers. I guess that makes sense considering the percentage affected.
Wishing all a good weekend no matter where you are on your journey.
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InnB- The infusion went well. I took Benadryl tablet at home prior to my apt and I didn't get the restless leg or super tried feeling. So I will keep premedicated my self before appt. I have other medication for nause , Kyril. i'm going to do the same so prior to infusion I take. The office cannot bill me for it probably cheaper. also I will not have medications just sitting around the house after all of this is over. If anyone else wants to do this make sure you let you're MO know so they can change the pre medications before you go to infusions. Then I came home a rested , watched tv and cooked dinner. Also got a new prescription to help support my low WBC, "granix " self injection that is 3x weekly 24 hours after infusion. FYI: I cannot have neulasta bcuz that medication takes a 14 days infusion cycle. Current Taxol cycle is 7 days. Additionally my MO is now watching my iron and magnesium since I've been anemia and vomiting( electrolytes). No plans this weekend, binge watch tv..lol
Good news is I've hit the half way point the Chemo and 10 more weeks to go til next step Surgery. Any one have points about things we should buy before surgery ??? Still haven't found a surgeon and Plastic surgeon but it will all fall in to place soon. I would like to use my own fat instead of implants. but who knows what my options would be at this point. Plus in 6 weeks I should have a follow up test to get real details of how effectively the chemo is working.
Duffy- I'm so sorry.. Hugs!!!
Life, you're on my mind today. Staying positive, good vibes...
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Duffyzmom, I am so very sorry. Big hugs from our dog loving family to yours.
GAWarrior, congrats on finishing AC! Congrats to others finishing, if I missed out.
So, I will say that there have been a few more side effects from Taxol this week--definitely more bone pain and some neuropathy, but they seem to be lessening now on day 4. I've been quite tired. I think this is normal and would just say for those of you starting 12 weeks of Taxol to prepare for it being a little more challenging at the end compared to the beginning. I upped my iron and potassium intake, and I added dates and apricots for constipation. Grilled tofu has been a wonderful thing to eat! Lots of iron and calcium. The good thing is that by days 5-7, I've felt mostly okay, even here towards the last 3 weeks.
Everyone have a great weekend!
dee
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