Treatment Zoom Meetup (Thursdays) place to keep chatting
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Hi ladies,
Now for a happy post. Taxol 1/12 took a marathon day, but I’m feeling pretty swell. I got 5 hours of uninterrupted sleep last night! It was wonderful! I powered through the ice baths for my hands and feet with stubborn determination. My Taxol nurse, Tatiana was a pure delight. She was nervous because she had never done a first timer’s Taxol infusion and because she was going to have to stay late alone with me, she was understandably cautious. Everything went perfectly fine.
Cyndi, I’m so glad to hear you are doing better. I’ve got the early stage of a bladder infection so I start antibiotics today. Im not sure what will happen to the lab lady who made my life so difficult yesterday, but she has a bunch of high level people pretty annoyed with her antics. Karma.
I really envy all you ladies getting out there and being so active. My AC had me progressively fatigued until the end, but I was finally able to gain back most of the weight I’d lost. The bone pain in my hip seems to be getting better as well, so I’m hoping to get more walking done without the limp that was hurting my back.
My physical therapist is really working wonders on the pain from my axillary node dissection and the mild lymphedema. I recommend it highly to anyone suspecting they have cording or still having limited range of motion. The massage hurts a bit as do the exercises until you start getting results, but it is so worth the effort. My pain level is much improved. I still have the numbness and occasional nerve pain, but we all know that just takes time…a long time.
Looking forward to seeing you all Thursday. I’ll try to be awake this time!
Catherine
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Catherine, I love your bat ears! My drama loving daughter would be impressed. I hope lab lady gets seriously disciplined. People working in oncology need to be the most caring and least power tripping. It sounds as if she has completely lost her sense of purpose. What a witch. And I know a UTI can make my mood irritable even when I’m not suffering chemo effects. She is fortunate you actually are able to cope as well as you did. Hope the new meds are helpful. Seems like it’s always something.
Blum8, yes, do find ways to get out that work for you. Even a cup of tea on a park bench can be a nice change.
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Good morning, oops, I mean afternoon everyone!
Remember that song in the 80’s “I don’t like Mondays”? Well, I like this Monday because I’m feeling a lot better than I did the first 2 days after Taxol. Wondering if that’s typical for Taxol
Question for today: has anyone else experienced their fingerprint recognition failing on their iPhone and iPad? Even with moisturizer mine won’t recognize my prints anymore.
Oh, and I almost forgot! Remember to wear socks for Taxol icing. It’s VERY cold without them. I loved the nurse’s advice. She said “channel your inner polar bear”!
Hope everyone is having a good Monday!
Cathe
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Good afternoon ladies!
I hope everyone is having a good day today. My energy started improving on Monday. Taxol #1 Saturday and Sunday were pretty tough. My Breast Cancer Journey journal has a section for writing about something that made you smile during the week. I decided to watch funny animal videos. Makes me laugh every time
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Small update,
I had my second TC treatment on 5/25. My energizer bunny day didn’t happen, and I ended up sleeping through the Zoom meeting on Thursday. My cold capping is moderately successful. Not going to be one who keeps all my hair. Still keeping up with it since Taxotere has that risk of permanent hair loss.
I’m back to having a sore tongue, but I can manage it at its current level of annoying. I have 2 treatments left, then radiation. Little by little, I’m inching forward.
Hope everyone else is hanging in there.
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Hi Ladies,
It was so nice to meet our newbies and see some regulars last week. I hope some of you will join us here to chat.
Cyndi, don't feel bad. I slept through the week before and I think I was on camera! I can relate to the missing energizer bunny day! I think the good news is that each time is different. My second Taxol wasn't the same as the first. It was still rough, but only one day instead of two. Don't lose hope on the cold capping. Who knows how much I might have kept if I'd tried it. I haven't really lost any more since the second AC took effect. I think if the words “permanent hair loss" were ever spoken to me, I would absolutely do it. I have seen at least 4 ladies doing a couple of different caps at my regular infusion time.Port Scoreboard - Bard port-a-cath low on the chest (boob territory) 2 wins, 4 losses. I went in for a dye study this morning and left with a brand new port located in a higher “normal" non-boob territory spot. I forgot how much this hurt the first time around, but I'm relieved to have the old one out. I'm spending a little time in the land of Ice and Tylenol 3 for a few days.
Liten (pronounced LEE-ton, Norwegian for “little one") is the little grey cat you haven't seen yet, has decided that I don't play with her enough before bed. She has a collection of toys at the foot of the bed and viciously attacks them approximately 30 minutes after we have gone to bed, snuggled sweetly and relaxed me just enough to be drifting off to sleep. I'm not sure which one gets the leaping pounces, but it sounds like a giant cat weighing at least three times her size. She weighs all of about 6 pounds. I'd love to have a night vision camera to capture the acrobatics.
Question for Thursday - has anyone had experience with comprehension machines for lymphedema? My PT is applying for one for me.
See y'all Thursday
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autocorrect strikes again!
Compression not comprehen
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I hope everyone is doing well. I had my third TC treatment on Wednesday. Other than it taking three sticks to find a vein and getting started a full hour behind schedule, treatment itself was uneventful. Once again the day after was one of being wiped out completely. Slept from noon til 1 and again from 4:30 to 8 pm. Stayed awake long enough for supper, then slept from 11 pm until 10 am. Normal me couldn’t do that if I tried. I mentioned the fatigue to my MO and she said to just listen to my body and rest. If I had months of treatment ahead she said she would consider stimulants, but with my treatment end in sight, she said to stay the course.
Cold capping was exhausting as the start delay meant we were changing caps until 9:30 pm that night. But since my first shedding on days 16-20, I have stabilized to a great extent. The MO who originally discouraged me from even trying was impressed with the amount of hair I have.
I missed being with you all yesterday. Looking forward to “seeing” you next week.
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Cyndi and the rest of the Thursday Zoomies,
Delays are exhausting. I can relate! I had a really fast experience with #4Taxol. I was in at 8am and out the door by 11:30. It was heaven! #5 today was a bit longer. In at 8:40 for lab draw, Dr.O at 9:30, infusion at 10:15 to 12:30. That was the plan, but infusion didn't start until 11:40-1:40. Still not bad, but on a day when anxiety is high, every little setback seems like a catastrophe. Ativan helps me calm down.
My big news today is that my scalp/hair really started hurting on Friday and by 2am Saturday morning I could not stand it any longer. The steroids from Friday's infusion keep me up most of the night, so I decided to do something constructive. Yep! I scissored off the length of what was left of my hair and then clipped it down to the scalp. It was such a relief to get the quickly thinning hair off my tender head. I could tell that #5 was going to be the end of any hangers-on and the pain was getting worse by the hour. Hair gone, no more pain. And it's a lot cooler now too! No sweaty hair during a hot flash!
Downside to shaving my head…the kitten had no idea who I am with the wig and freaked out. With a cap she is okay, but man does she hate the wig!
Hang in there with the cold caping. I was doing good until the Taxol #4 got hold of my follicles. Next eyebrows!
See y’all again soon.
Catherin
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Sorry for missing group today. I spent all afternoon from 12:30 to 6:45 trying to get my new insurance ID number. Our new company policy was supposed to be processed last week, but because one of my coworkers left the company, United Health Care and/or our broker decided to revise our rates. As a result none of us had a policy number or ID numbers until shortly after I sent a rather scathing email to the CEO of the brokerage. Oddly enough we had numbers 20 minutes after he read my email. Wish I’d had his email address at 1:00pm!
Alas, my chemo tomorrow is still canceled due to lack of preauthorization! And to add insult to injury I have discovered that the owner of the quilt shop where my friends bought the long arm has been sitting on my order because “it’s tricky”. The regional manager has gotten involved with the situation and has promised me that it will ship no later than Friday (tomorrow). All my questions about why this happened are met with “it’s tricky” and “HandiQuilter will stand behind this machine and make it right. We will take care of you.” My take is that the owner has money problems and used my friends money to pay something else. How do you lie to a cancer patient and live with yourself
I’m not real happy with people right now.
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Good to hear from both of you Sarahmaude and Kathrynw1thasea! You were missed, but we understand the circumstances. Kathrynw1thasea we are so sorry to hear about the insurance policy difficulties and then on top of that, the issues in getting your long arm. Wow I really hope the owner of the quiltshop wouldn't have to resort to such desperation as to have to "borrow" money from their customers. It is a shame that you got the short end of the stick with that.
Sarahmaude - Congrats on completing your third A/C treatment! We missed you today, but understand that your body needs to rest and it is important to listen to your body! We too are impressed with the success you have had with the cold capping. We are happy to hear that the discomfort you face while doing the cold capping has been worth the sacrifice! That is great.
We hope to hear and "see" you both soon!
Take care!
--The Mods
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Hi Ladies,
It was good to be back with y’all this week. I needed a lift after all the drama with the long arm shop owner and the insurance. I am happy to report that United Health Care really stepped in and took care of me. As of this morning and before my infusion started, I had all of my out-of-pocket costs accounted for on the UHC policy.
My house is almost back in order after the long arm installation. I’ll be taking it for a trial run on some practice fabric this weekend if my Taxol doesn’t knock me down too much.
Speaking of which, my port access worked on the first try! Maybe next week I’ll be able to sleep more than 3 hours the night before infusion. I didn’t fully appreciate how much some of the side effects had subsided in the 2 weeks I missed treatment. They are certainly back now, but it is nice to know that some of them go away so quickly.
Today was a very good day, all things considered. I asked for my favorite nurse and ended up in a private room. I got to watch stage 7 of the Tour de France instead of the Food Network. If it’s July, you can bet that I’m watching TDF coverage. I do want to know why anyone thinks chemo patients fighting nausea want to watch programs about food? Is it just me? I’ve never seen any of the patients watching it.
Hope everyone has a fabulous weekend!
Catherine
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I just realized I never added this topic to my favorites. I missed your posts. Read all and now I need rest.
Hope we all had some good sleep.
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Julie mentioned last Thursday on the zoom call to reach out because she had a similar journey as me. She said I could discuss reconstruction options and her choices.
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Hi, teresa_ann, and welcome! We're glad to see you here in the discussion boards too. You may want to read/join the Breast Reconstruction forum, to reach more women considering the same reconstruction options than yours. Just click the link to go straight there, and let us know if you have questions!
Best,
The MOds
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Hi everyone,
Thanks for all the encouragement on Thursday. Coming to group always helps lift my spirits. It’s a club none of us wanted to join, but it’s so very nice to have companions on this journey. Especially on the rough days.
My Taxol #8/12 went fairly well today. The port worked without a glitch, but somehow my request for my favorite nurse was ignored. I assumed she must have been off duty, only to see her 15 minutes after my arrival. We were both surprised to say the least. I also ended up on the “hot” side of the infusion room. I’ll be more assertive next time.
Once I got my iPhone hot spot working, I was able to watch the Tour de France stage and relax. All went well after that. The ice was more bearable and the time flew by. I took a nap when I got home and was awakened by horrible dry mouth and leg cramps. My labs aren’t posted yet so I don’t know if my potassium is off again. Maria would have told me…live and learn. Maria is my angel in scrubs.Has anyone else experienced leg cramps so soon after infusion? What helped you?
Looking forward to chatting with y’all again soon.
Catherine
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Catherine. I have had leg cramps. But not often since my 12 Taxol/Carboplatin infusions. Our bodies are weird. My side effect was a constipation/hemorrhoid cycle. Four months to be ok.
Dry mouth. Do you use biotine lozenges, spray or mouthwash? These are items I keep around.
Leg cramps happened in the last few months. I can hear my occupational therapist saying stretch!!!!
Hard but helpful. No matter what, drink lots of water. Lots. Flushes toxins out.
I got in to see my plastics doctor. He said my breast sore is healing. Also said with my blood clot, early November is my likely surgery. 3 more months with 1 fake and 1 real.
Take good care all.
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Hi all, I figured to post hoping some of Thursday group will post.
I had my bone scan and CT scan yesterday. The "drink" for the CT scan I drank as directed. I moved seats after the first half and added the lemonade to the 2nd half by encouragement of Colan cancer patient I had just met. She suggested half a packet and to use a straw. I just drank it and it was not bad. A bit of heartburn, but ok.Thiscnew friend was diagnosed at stage 3 in 2016. She went in because of a burst appendix. Had months of trouble eating.
Today had my herceptin/perjeta. Met with NP who said bone scan looks good. CT not officially in, but MO sees nothing of concern.
I will sleep tonight. Whatever happens, I will have a Dr team ready with treatments.
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Hi ladies,
Taxol #10 went better than I expected. That’s actually a bit inaccurate in that my port acted up and I had to do the heparin dance again (rolling shoulder, lifting arm, and bending forward to touch my toes) but we got it drawing blood better than ever. This time I didn’t panic (took Ativan well before we left home). I objected when they tried to give me to someone other than the nurse I prefer and put me on the hot side of the room with lousy wi-fi again. I was able to have Maria the port whisperer and a private room with excellent wi-fi (because it’s across from offices and the wireless access point is right outside the door). Maria got assigned these private rooms a month ago but I met her in the big public room in June. The private rooms are fabulous for Taxol and icing! Private TV if you want to watch regular television and not the Food Channel which makes me nauseous! I can watch a video on my iPad and not have to worry about headphones or how much noise the ice makes when I move. I’m normally a person who engages with others, but I’ve found that I want to interact only with my nurse during infusions.
Thanks for all the encouragement on Thursday. I believe it really helped me control the anxiety and focus on powering through these final infusions.
See you again Thursday
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Glad you advocated for yourself. Being present in the moment is so important. How you feel and what you need.
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kathrynw1thasea, we are so glad your infusion went well! We agree with K-gobby, great job understanding your needs and advocating for what is right for you!
See ya Thursday!
--The Mods
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Hi all, I’m looking forward to hearing how the radiation simulations went last week. Thanks for the advice from everyone.
Taxol #11 went well even with the false fire alarm evacuation right at the middle of my infusion. None of us were keen on climbing back up 3 flights of stairs and I kept assuring the nurses that we would be safe in the 2-hour fire rated stairway for at least the 30 minutes it would take the fire department to get there and determine if it was a false alarm, but after 15 minutes they herded us outside. At least we had a cold front at the time (<100-degrees), the shady side of the building and a good breeze. Getting back up those stairs was a personal victory for me. I made it to the top with just one stop along the way. I was winded but not worn out! Others didn’t have it so easy.
I heard later from my mother that none of the people on the 1st and 2nd floors evacuated the building to the sunny side. They could see the fire department at the building across the street and knew it wasn’t in our part of the complex. Turned out to be someone smoking in a bathroom! Guess they didn’t know smoke detectors in hospitals actually detect smoke, not just heat!
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question: I started letrazole yesterday and I swear my hips, knees and lower back hurt more than normal. Today it’s the same thing. A few hours (6) after taking it, I’m aching again. Am I being paranoid or can it happen this fast? What can we take to offset the pain
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Thursday evening zoom group on here? Missed the time yesterday! ;-(
Hope to be back next week! —-Lauren
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You were missed yesterday, Lauren!
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I missed too. I had one of those ah ha moments. Water. At home I had easily drank all my liquid daily. Water and antioxidants too. But back to work, not so much as I have gotten busier. Today I awaken with that taste...slight medicine like and thought "not again". Then Bing! Water!!!!! I went to the fridge and grabbed my cold water. 32 ozs for the morning.
As to aches, I have had joint hand pain and neuropathy in my toes. Along with the frozen arm. Is it the letrozole, the blood clot and eloquis and/or the every 3 week herceptin and perjeta? As I said to my younger sister. Pull out the drug side effect sheets for all meds. What is most common?
Above all else, monitor daily. Can you stretch and move about and feel better? Check with your medical team as well. They might have a suggestion.
Enjoy the days ahead with hope for better days...a day at a time.
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Hello All!
kathrynw1thasea I'm so sorry to hear about your aches and pains? Did the doctors also start you on a regimen of Lupron? The combination of that with Letrazole can sometimes cause so much aches and pains that you feel all of over pain similar to the tenderness of a fever. This fades away after the first two to three shots and usually within 48 hours of the shots. We hope you feel better soon!
K-gooby - great advice about the water and stretching. I think both are a huge help!
Happy to hear from all of you.
-The Mods :-)
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Hoping everyone has a terrific holiday! I'll miss you all next week.
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Checking back as a “graduate” of this group. I’m 6 months post chemo and 4 months post radiation. Just had a checkin with my medical oncologist today. I’m doing great so far. I said to them that I feel well enough now that I almost forget I was in treatment so recently. I feel well, and still am one who has almost zero side effects from my AI (anastrozole).
I had negative CT scan and negative Signatera results this fall. We sent repeat Signatera samples off today. Even though cold capping kept me from needing to cover my head, I’m still regrowing what I lost. It’s coming back as thick and healthy as it used to be. It’s odd having my length so much thinner than my crown, but my hairdresser has kept my length in a chin length French bob, so it’s gradually catching up. And I got it colored in December, so my technicolor (mouse gray on top, white temples, and remaining old color on sides) is no more. I did have one of those days when I couldn’t make one more decision on the day I had it colored and just told my trusted hairdresser to choose. Well, it’s the most red it’s ever been. I may tone that down a bit next time. But I’m really happy to be looking more like I think I should.
Hope everyone else is doing well! I think of you all frequently.
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Cyndi, it's so wonderful to hear from you! You are very missed on Thursdays, and while it's always bittersweet when someone 'graduates' from the group, it's the best outcome we can hope for. Thank you for the update, thrilled to hear you're feeling well and getting back to looking and feeling like yourself! if ever you want to drop in and say hi in group, you're always welcome.
The Mods (J here
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